As I was getting ready for work yesterday morning, I took a good look at myself in the mirror and realized that I actually do look sick. It is often said that ME/CFS patients look healthy but I usually don’t. When I am having a flare, my eyes will get very small. My husband describes the look of my eyes as “two pea holes in a snow bank”. My eyes will get really puffy, they will hurt, and it feels like they do not want to stay opened. The worse I feel, the worse my eyes look. My husband has commented that there is no way you can fake that look when I told him my ex-husband used to accuse me of faking my illness.
Another symptom I frequently experience that we don’t hear a lot about with ME/CFS is ringing in the ears. The ringing will get so bad sometimes my ears feel like they are going to pop. Everything will all of a sudden sound like it is muffled, voices and noises around me sound as though I have cotton shoved in my ears.
You would not believe how many nights I have laid awake because my entire body itches so bad. I will scratch so much I have my skin bleeding sometimes. Rashes are another problem I will have. I will get these little red patches on different areas of my body, particularly my chest and stomach, and my arms will have these tiny little bumps. They kind of resemble pimples but they’re probably only the size of a pin head. I have also recently developed some sort of rash on two different occasions that felt like burns but I didn’t burn myself. The first one was on the back of my left leg, the second rash was underneath my left arm. I noticed the rashes when I felt this incredible burning pain. They were red and were kind of scaly. The one on my arm started to spread but then it stopped. It has healed but I still have scars there. Still haven’t figured out what that’s all about.
Ask anyone who knows me well and they will tell you that I have difficulty getting words out and completing sentences. I lose my train of thought so easily and my concentration is continuing to get worse the longer I have ME/CFS. Sometimes I can’t get out the simplest word or phrase. It’s like my brain doesn’t catch up to my mouth or something. It can be embarrassing when I am talking to someone who doesn’t know my health problems and they just give me a blank stare and have to finish my sentences for me. I get that “Wow, what an airhead” look.
I have been experiencing the CFS hot flashes for years but as I get older, I also am starting to get the hot flashes associated with perimenopause. But this recent flare over the past couple of weeks brought back the markably different hot flashes, and more severe, that I haven’t experienced for quite a while. Every night I experience hot flashes, but these have been unbearable. I felt like my whole inside was on fire and my husband could feel the heat coming off of my body without even touching me. It doesn’t seem to matter how low I turn down the central air, nothing helps me cool down. What I have noticed that is really odd is that even though my body feels like it is on fire, and others can feel the heat coming off of me, my temperature when I take it is way below normal.
If I had a dollar for every morning I felt like I was going to puke my guts out since becoming ill with ME/CFS, I would be loaded. I have only been pregnant once, but I have had that morning sickness feeling enough for over a dozen kids! There have been times where I have thrown up when this nausea hits, then once I’ve done that I will feel better. Most of the time, however, the nausea remains for most of the morning.
I wear sunglasses every day, all year round, and I will wear them up until it’s almost dark (especially when driving). Even in my house I keep the rooms dark and I am always going behind my husband and son turning off the lights because of how much the light gives me a headache and makes my eyes hurt. On cloudy, rainy and snowy days the light is still too bright.
I didn’t start experiencing panic attacks until after my son was born and he will be 8 years old soon. I remember the first time I had one I was having a bad CFS flare and I was trying to get out of the house after being bedridden for so long. My husband took me to Walmart to buy a few things and when I saw all of the cars in the parking lot, I had a panic attack. I also will have panic attacks when I’m flaring when I am around a lot of noise or people, especially children. I have had a few of these in my own home when we have had family visit. I will feel my heart race, I start to sweat, and I feel like I am going to have a breakdown. It will get really bad sometimes. I have started to have panic attacks at family birthday parties also and I have to leave.
Shortness of breath:
The type of shortness of breath I experience with a CFS flare is nothing like the shortness of breath everyone experiences from normal exercise, climbing a flight of stairs, etc. I wish I could describe it but it feels like my lungs are fatigued like the rest of my body and they have to work twice as hard to perform their normal function. It’s like I have to take really deep breaths to feel like I am getting any air.
Please comment with any weird symptoms that you experience with ME/CFS. I’m sure that I have more but I’m too tired to think right now!
Of course the infamous brainfog…
Oh and yes, the nausea is a pain in the ass as well. Then there is the near always cold hands and feet. And as you described: Painful eyes, sometimes it feels as if some needles are in the head, and pinch right behind the eyes 🙁
I have all of these symptoms too and a fun handful of a few more. My feet also get ice cold, I get very dizzy either with small movement or when standing, I’ve also had more head, neck and face pain.
I experience all the same symptoms, loosing balance, dizziness and blurred vision is becoming quite frightening. I take pregabalin for the face pain and the hot flushes worse than the menopause . Fortunately I do not have panic attacks. The family play charades when I have brain fog but it’s no really funny.
Ps. It’s pam again. I also have wired vibrating sensations but in my lower abdomen often feels like I’ve been plugged into the mains. (Previously reported this )
The Mind Relaxer says
Shortness of breathing, that’s what I’m having even doing short exercises. Weird really..
I will get shortness of breath and break out in a sweat just from vacuuming my house. My is NOT a big house. It was built in the late ‘50’s. An average house was not large back then. Some thing happens when I carry a few bags of groceries in. I hate it! It’s embarrassing! Makes me feel like a giant whimp!
I get a feeling of vibrating in my body, which I often describe as being at the base of my spine. When I first became ill this was the worst thing, and it was constant for almost a year – it’s gotten less and less. I feel that there is a low-level shaking going on inside my body all the time – it’s just that in the first year it was very violent. It was very unpleasant, and still worries me a bit – I just have to accept it. My doctor told me that this happens rarely with ME/CFS, but does happen. I have since met other people online who have experienced similar things, although none exactly the same. It was worse at night and during sleep/after waking up. I still have a vibrating sensation during sleep, and often dream that everything is vibrating. It’s horrible. If you have this symptom, I’d love to know! x
I too get the weird inside vibrating thing. A weird feeling you can’t explain. The breathing issue like one posted its like your lungs are even fatigued. Chronically tired, but oddly will feel somewhat better around 5:00pm. Legs and arms feel encased in concrete, brain fog, shakes, severe allergies, heightened sensitivity to noise, panic attacks, and the list goes on. I’m getting ready to work with my chiropractor and starting multiple supplements, a very light exercise program. Such as walking 5 min. Keeping my fingers crossed as he is the only one who actually listens and knows its not all in my head. God bless everyone dealing with this.
I am this very moment in a flare and I am shaking inside without actually moving. I’m glad to know someone else experiences this.
Please check out lyme disease and co-infections. I have had ALL of these symptoms, including the vibrations. 2 years of heavy treatments and I am FINALLY in remission.
Find a lyme literate doctor in your area!! Normal doctors will not recognize lyme, and very rarely will you show positive on a blood test, they are antiquated. (I actually had a positive lyme test and 5 infectious doctors refused to treat me.
Im a firefighter in Florida.
Did you ever find a cause for your vibration symptoms. This started when I was 38 and I believe it was due to low progesterone. Susan
I’m wowed to know I’m not alone. I’m 56, and have all these symptoms everyone is talking about. The shortness of breath just to write this. I get this shaking feeling too, and have had a strange vibration near a front picket in your jeans would be, it’s like having a cell phone vibrate there but there is none.
The nausea is every day, some days I will just puke, poop, and pee all at once. This has happened about five times in the last 1 1/2 years.
I am so tired, nauseous, and beennpost menapausal for 5 years but still have major icky combustible heat coming from with in, that my husband can feel without touching my body. Headaches lately are not stopping either.
I am in the midst of being diagnosed through Stanford University
Pam bailey says
I have the experience of a swerling in my lower abdomen which becomes stronger and stronger and then explodes. Don’t laugh, but then it’s as if I’ve been plugged into the local power plant, this energy takes over and my torso literally jumps a couple of inches of the bed and the rest of me jerks uncontrollably. I have never told anyone this but today it was particually bad that I looked on line and realised I’m not mad. I also experience severe burning and pain in my arms. I was diagnosed with me /cfs approximately eight years ago. -. Maybe I will go to the doctor!
Michelle Wordley says
The itching thing drives me nuts!! It is especially bad after being out in the sun or bathing or sometimes for no reason at all! Then there is the nausea which I tend to get when I eat more than one meal a day. Allie talked about vibrating. i thought it was just me!! it seems to have gotten better but… How about facial twitches, I get them about once a day? Or back tremors?The last month I have caught myself going sideways alot when i walk, causing me to double think whether I need to go somewhere or anywhere at all! What I can’t understand is how somedays I can do something as simple as make macaroni and cheese and the very next day not be able to remember the recipe!! And the infamous light sensitivity – I can not be out in the sun long because I get really sick and a migraine and my eyes hurt and I develop a rash. Even on rainy days the sun is still too much! I keep the lights off as much as I can at home, but my husband can’t see in the dark so when he is home there is not much I do can. And as a writer i think it sucks that I am having trouble with words – speech and grammar and such. I have noticed an increase in my stuttering, but nobody else has because I have always stuttered!!
Michelle Wordley says
Oh yeah… Does anybody else experience this???? I find myself saying things I don’t mean and it is hard to take it back. for example my social worker asked me how we are making it and David says I told her through friends and family. But family and friends haven’t been much help and little help financially!! So now she thinks we don’t need help. Anyway, am I alone in saying things that don’t make sense?
Michelle, I do the exact same thing. I don’t know how closely attached that is to the ME, but I kind of tend to say the first thing which enters my mind, regardless of whether it is true or not. I believe it’s because I’m hyper-afraid of not keeping the conversation going, which happens a lot when I’m at a loss of words, and then just say the random stuff. Even worse, I don’t really remember I’ve said it afterwards. So no, you’re not alone in saying things that don’t make any sense. Take care.
Yes! I get this.! I thought I was because brain fog hyjacks your memory so you just cover up to save embarrassment. X
Sandy Robinson says
Michelle, I am terrible at getting what I want to say to come across the way I mean it. I have a tendency (according to my husband) of being too bold at times with what I say. I have actually told people that I didn’t like certain food items they made and I know I have said things to make people feel bad. That’s not my intention but it just doesn’t come out right. You’re not alone!
Teresa Fierro says
I’ve been having the same problem with my eyes. I look so sick and tired. Some times I can’t open them. I get this burning sensation and the light hurts my eyes. About the speaking difficulties, I sound like I took heavy sedatives. If I’m on the phone, my family knows I’m having a bad day just by listening to me. I get the nausea quite often too, and it’s not fun. The hot flashes follow me everywhere, and I always carry a fan in my purse.
The shortness of breath gets so bad some times that I feel like I’m going to get a heart attack and die right there. I get it even just by having a conversation. I’m glad that at least someone understands how I feel because other people think that I’m just having emotional problems.
miranda's mom says
i have the same problem. no amount of makeup can make me look good on bad days. i’m nauseous every day. i think it’s because of IBS. i get dry heaves. last year i developed sweats and chills. endorcrinologist did a lot of tests — all came out normal. said “i might have to live with it”. sometimes the sweats are so bad i have to wrap myself in a bath towel.
Teresa, yes I to have the burning eyes sometimes running eyes, and blurry vision, and hot flashes, and I get a lot of pain in body as well, it’s horrible I sympathise with you, it’s hard to bear at times, and it helps knowing there are others who feel the same on this site, and know you are not alone.
Hot flashes are your liver realizing you are I’ll or thinking you are dying so it creates warmth for the body to survive.
Wow…everything written oh here is me…I have had it for 15 yrs…I cant find one doctor to help me…most of them brush me off and say she is crazy…because nothing shows up in the blood work …I stutter too sometimes…I cant stand the sunlight because it gives me headaches..love the night..cloudy days..rain..I feel like a Vampire…Cymbalta has helped alot…and viacadon…but it is so hard to get the medicine..I have cried so much because I cant find anyone who cares.
Hi Mara! I cry a lot too. I don’t know anyone with Cfs only online. It’s the worst feeling to have this illness take over your body and not understand it yourself and then have doctors who sometimes brush it off like it’s not a real thing or it’s in your head. I tried cmbalta too it helped my pain but not my other symptoms . I did get off of it and had a bad flare up. Hey l don’t know you but l do care because l know how it feels to feel alone and hopeless . I pray everyday for a miracle of some sort. I don’t know if your religious but if you ever feel alone just know god is there. I really hope one day the medical world will look into this a lot more and find out the cause . I know when it feels like the end sometimes it’s not it’s a new beginning and a good one. Things can change for us so keep your head up and maybe try talking to more people online, it might help. Take care and your not alone.
Tears contain endorphins. Your body is trying to help your sadness. Go ahead and cry.
My doctor recently prescribed Cymbalta for CFS/Me just for the crawling under my skin, which is there all the time, but worse at night. I lose so much sleep. I am in WA and got this on prescription. I did not start it as my friend with CFS recommended trying a good Dribose, which I have been doing for 2 months. I believe it gave me a 5 percent pickup in energy and helped with the joint and muscle pain. Slight improvement in the crawling sensation. I have such a myriad of symptoms in the 25 yrs with this illness. But I have to say, the worst symptom of all is the isolation and no one understanding. I think this website is amazing in that it doesn’t help with symptoms, but it helps us to understand more and realize we are experiencing these due to the illness. I thought a lot of things were due to getting older.
Te crawling under the skin and the joint and muscle pain reminds me of my low progesterone and estrogen Issues -which can be checked out with a blood test. There might be several things going on instead of just one cause. Susan
Sandy Robinson says
Isn’t it nice to know that we’re not alone with all of this stuff? I don’t want anyone else to go through what I do but it helps to know I’m not alone. I know there are other weird symptoms I have – I just don’t think about them until they happen.
Sandy – I am so glad you posted this!!!!!!!!! Not that I am “happy” with all that you are experiencing, but it’s like reading my life. I could not believe when I got to the itching part (you also, Michelle). I’ve been saying to my husband for years that no one I ever mentions itching, and it is a brutal, cruel aspect of this deal we’ve been dealt. It started a couple of years ago where I had the sensation of itching, yet nothing external to indicate the source, i.e. poison ivy, etc. No Doctor could figure it out. Not knowing from where it was coming, I eliminated all supplements and took only my daily necessary medication. I was on benadryl which help for 3 days. I changed my food plan and eliminated everything possible. I was down to eating protein and veggies. No change.
To show you how brutal systemic itching can be..when I spoke with a nurse in the Doctor’s office, she told me that it is one of the worst things a human being would have to cope with. She said it was documented that animals killed themselves from itching with no relief. Well that kinda blew my mind.
I still have it on a daily basis. It comes on usually towards evening, except on days like today, where it started around 2-3 pm. Here’s what I’ve used and continue to use to cope, since it’s not going away anytime soon. Since the body/brain can only respond to one sensation at a time, cold will override the sensation of the itching. I’ve had icepacks strategically placed all over my arms, legs, head, etc. Then I came across a product that has been a life saver. It’s called Biofreeze. It’s unlike anything on the market for the cold numbing feeling. It’s awesome. Sometimes, I’ve put a little too much on and froze myself in the middle of summer – lol. But it works. The brain focuses on the cold sensation only, not the itching. It’s a little costly, but we’re talking about me wanting to rip my skin off and kill myself otherwise. I purchase it from drugstore.com, but I recently heard that CVS carries it, which is new. Up until now you could not get it from a chain drugstore. For my scalp, which gets itchy, I use maximum strength scalpicin like it’s water. That works. I also get itchy on my gums in my mouth and my teeth feel like metal, so I use colgate orabase nightly. What a flipping regimin!! I have an icepack on the back of my neck right now as I’m typing this in bed. The new “frozen peas” in CVS are great and a comfortable icepack. Whe I first take it from the freezer, I wrap it in a dish towel, so I don’t freezer burn my head or neck! Ok, that’s it on the itching. I’ll come back to comment on the other stuff, which is ditto, ditto and ditto. I want to tell my husband that I’m not the only one itching. Oh, btw, a therapist explained this week that pain manifests itself in heat, pain and itching. She knew it, but none of my MD’s could just tell me that! UGH!
Sandy Robinson says
I have used BioFreeze when I was being treated for tarsal tunnel – the foot doctor recommended it to help with the pain before they were able to operate. I never thought about using it to help with itching! That’s a great idea. I will have to give your suggestions a try when I’m kept awake from the ever-annoying itching.
The therapist who explained the itching phenomenon specializes in helping patients with managing chronic pain and illness. It’s her entire practice, so she knows her stuff (more than a lot of Drs. I’m afraid).
Eyes – get itchy and at times so irritate that I have to take my contact lenses out. this again is in the evening.
Ringing ears – on occasion
Nausea – way too frequently
Panic Attacks – yes, another great experience from time to time. I do my best to stay calm and not freak that I’m dying, having a heart attack, or that it’s my nice little ascending thoracic aortic anureysm.
Speaking difficulties – finding words – ugh! – at times I sound illiterate!
Light sensativity – when I do venture out in the world, I’m like a mole who just came out of its hole. sunglasses immediately. at times I can’t even take the light from my lamp on my nightstand!
Shortness of breath – I can’t believe you mentioned this and exactly the way I try to describe to my husband. I don’t even mention it to my Doc. It sounds like I’m nuts. It’s not like other people have. It feels as though the lungs are so fatigued that it’s hard for them to process each breath.
Ok – that does it on this one!
OMG – how could I forget about the hot flashes?@!? combo of peri/menopause and another trait of me/cfs. We’ve really hit the jackpot, no? sometimes i freeze my family out. i tell them at night, if you’re cold, put on a sweatshirt and sweatpants, lol!! You can imagine my electric bills!
Sandy Robinson says
My husband and son are always complaining about how cold it is but I figure it’s easier for them to get warm than what it is for me to cool down. They can add clothes…I can only take so many off and that doesn’t even help with this stupid illness.
Hi I’ve been reading all your posts and so sympathize with you all! Unfortunately my symptoms seem to be only “kinda” similar & am starting to wonder if I’ll ever get to the bottom of it! All bloodwork, etc comes back normal but I often have what I can only describe as a “puffy” feeling, with extreme tightness in my fingers & toes, extremely dry eyes & nose, & my gums ache, like I am retaining water or something but there’s no visible swelling. During an episode my whole body feels like cement & almost feels like my blood has turned into sludge. I’m 51 yrs./ had this ever since I was a teen & no doc can decipher it yet. It went away for several years too, but now is back w/a vengeance! Anyone here share any of these symptoms? Julie
Julie yes have the symptom of body like cement, legs like lead,even just washing up or a silly little job I have to sit down in between, before I fall down, and mine has flared up again after a bit of a remission, but had a lot of stress and a bad virus, then boom, back again.
Virginia Carmichael says
Hi Allie….I have something similar. I call it a fight or flight response. I get a wave like an electrical shock going through my body. It is like I am being put on “alert”. I also have terrible “hot flashes”. These symptoms occur without any physical or mental stimulus that I know of. I hope someone has an idea for a supplement that can address this. It is so good to know you are not alone! Thanks
This is the first time I’ve seen anyone talk about the body vibration. That was nearly the first thing that sent me to the doctor–along with the very painful feet. The neurologist just looked at me like I was nuts when I described it. Interestingly it has either lessened or I’ve gotten used to it. I also have light sensitivity, hot flashes–I’m 59 so well past meno, and itchy skin, always after a shower and only on my lower legs. Using a washing product or not doesn’t seem to make any difference. I’m glad I fell into this site–the information is helpful.
Faking it to exist. says
Buzzing – it’s in a band running from my temples to right behind the eyes. It comes on when I’m at my worst.
Extreme emotions – there are times when I find that I can cry at the drop of a name. It’s very embarrassing.
Speaking difficulties – finding words – they’re in there somewhere but I just can’t find them!
Memory and concentration – I was struck with CFIDS/ME 24 years ago while in my last semester of college (all while raising a family, refurbishing my first home, working full time and overtime). I had to drop out and then I dragged myself back a year later and struggled though one last class. I got my BS but I can’t concentrate well enough to use what I originally learned. At one time I was at the top of my class. Now I pretend I know what’s going on. I’m expected to be able to multi-task at work, but I usually fail to some extent. When I focus on just one project I do very well. Trying to change to a different one is very difficult and causes or feeds my downward spiral once again.
Light sensitivity – I MUST have sunglasses. There are times I can’t even tolerate the light from the power charge indicator of my cell phone from across the room.
Shortness of breath – my lungs apparently get too tired to work properly.
Itching – I’ve solved this for me. Mine apparently comes from yeast overgrowth. I used a prescription anti-yeast medication (for toenail fungus) and now I use daily pro-biotics and no more itching.
Cramps and muscle spasms – these get extremely intense at times and often prevent sleep. Usually they’re in my feet or calves, but they’ve been in my thighs and back as well.
Wow, sometimes I have to ask my self is this real, do I really feel like this or is it all in my mind, One doctor asked me if i felt like I had lost my mind, I find myself checking now.
I seem to have flare ups, a bit of stress or extra work load and there I go. Itching, blurred vision, sunglasses and curtains closed and the visor always down in the car. Sometimes its like there is a spirt following me around knocking things out of my hand, its not like dropsy more like an involuntary throwing of things that happens when I am tired. I laugh , my daughter laughs hat else can we do… She also laughs at all the rubbish speak, the wrong words that come out. We try to make associations of where the word came from, Like asking her to put the washing in the microwave, then there is the losing of words and also of things. Everything comes in batches. If I don’t rest, then infections or general ill health begins. That inner shaking often comes and I associate it with a sugar drop that doesn’t exist, almost panicy almost wanting to collapse. I get the stiff feet in the mornings and get foot cramps. I had a couple of yearers of swelling in the feet and ankles that has gone and left me with crunchy knee joints. Does anyone have urinary problems and sinus problems, abcessess, purpurea, ear infections or abcessess during a flare up. Sometimes in the mornings I have an intense pain around my middle section, making it hard to breathe and stand straight, like muscle spasm that is helped by urinating. Oh and the face, eyes, sometimes it doesn’t even look like me in the mirror its as if I have like bells palsy where one side is drooping, my eye is on my cheek and so puffy. Then there is the switching from itshy eyes to extemely runny eyes and dripping nose and intermittent sore throats. The dripping eyes and nose is really embarrassing Its not really apparent in my comfort zone but as soon as I goto a different environment and exert myself a bit more than my balance it starts. Think the yeast medication may work for the skin, its usually the first thing to go on my fingers, they split open and get really dry and really really itchy (like cracked heels). The rest of the body generally itches at night and I get rashes on my face , and chest. I totally understand the sweating with the cold temperature and usually heat up the bed. Rashes and weired welts and allergic reactions galore. Oh what a wonderful life. I must say though that I am finding a balance, I am managing to do somethings, I feel like I have made progress. I have to listen to my body, look for the signs and stop in order to avoid a flare up. Its not always possible but I have a limited life style now to avoid as much stress as possible and keep to short term projects where I can prepare in my own time and where I know I will have a long break afterwards to crash and recouperate as the exertion leaves me exhausted and sleeping or with infections.
jacky, I could have written your post myself, I have nearly but not all of the same symptoms, even the runny nose and eyes, and like you always seem to have infections, and have a very limited lifestyle now, can,t do all the things I used to love, it’s sad.
This illness takes everything away from you & affects so many systems. No 2 people have the exact same initial presentation, progression, etc. Groups of us will show up with something like idiopathic peripheral neuropathy, suffering the burning, itching pain/tingling/numbness that progresses from feet and moves up to sometimes as high as the hips. And doctors will keep taking the same diabetic tests, trying to hammer the square peg into the round hole; getting angry at us when we “refuse” to be diabetic on top of everything else!
Some of us have problems with the regulation of heart rate & blood pressure (B/P). There are at least 2 known ways for that to happen: POTS (postural orthostasis, tachycardia, & syncope) or NMH (neurally mediated hypotension). POTS makes the person dizzy to the point of nearly or actually fainting (syncope) when they sit or stand up (postural) & their B/P drops while their heart rate soars (orthostasis is a B/P drop when getting up; tachycardia is rapid heart rate). In POTS, you know what’s going to cause the HR to go fast & B/P to drop, unlike NMH, where the brain just suddenly gives you hypotension (low B/P) regardless of your position. The medications for both often help those symptoms but give you others you didn’t have before in the form of side effects. Of course, before you finally get a diagnosis, the medical profession will spend thousands of dollars trying to get you committed to an asylum for the mentally ill rather than admitting there’s a genuine physical problem requiring a medical response.
And I imagine there are more. This symfptom is the most likely one to get confused with Chiari Malformation, in which pressure on the occipital lobe area (back of the head) and up into the ventricles of the brain (holders of the fluid that bathes & nourishes the central nervous system) causes the same symptoms, & it points up the need for accurate diagnostic testing. The treatments for the 2 diseases are vastly different, & while Chiari used to be considered rare, MRI technology is showing that up to 25% of the population, possibly more, have the malformation – but not all are symptomatic. Trauma will activate it in some people – & in some cases, the trauma in question is a bad case of ME/CFS/fibro. But as terrible as Chiari (& associated conditions like syringomyelia) are, they can at least be diagnosed by physical findings. Unlike ME/CFS.
In fact, think of this list of symptoms people are noting:
1. Retropulsion & lateropulsion (involuntary walking backwards or to the side)
2. Clumsiness & a tendency to bump into things or trip & fall so often, you & your friends/family are embarrassed. Even if you have extensive physical training, & maintain it as much as you can, it’s of little help.
3. Eyesight that worsens, blurs completely, goes totally dark, or where you can discern only light/dark/some motion, that comes & goes spontaneously, with no correlation to vital signs, food intake, blood sugar, or tiredness most of the time.
4. Peripheral neuropathy in feet, sometimes also in hands.
5. Fatigue with non-restorative sleep.
6. Exercise/activity intolerance, where it takes sometimes days to recover from a short walk or a stretching session or even an extra shopping trip.
7. Inability to digest foods, sometimes for days at a time, followed by times when you have few to no problems. Complicated by nausea that comes by at times that are totally illogical & lasting for long periods of time, with sometimes variable intensity. Always made worse, it seems, by eating, yet, you sometimes wonder if the nausea is BECAUSE you are hungry. And you never seem to win. Antiemetics sometimes have the paradoxical reaction of making the nausea far worse, or doing nothing but making you sleepy. Occasionally, inability to eat around a certain smell that you found innocuous before but which is now grossing you out monumentally.
8. Gaining weight & losing muscle mass despite exercising & moderate caloric intake that a dietitian has approved for you. (and let’s not forget, being called a liar & a cheat & being accused of not exercising & overeating constantly).
9. Trouble word finding, sometimes accompanied by stuttering or slurring when you are sober & as well rested as possible. Use of the wrong word that is sometimes grossly inappropriate. Trouble extends to the written word & rehearsed phone conversations; you may rewrite something multiple times before sending/posting, only to offend someone without even trying, when you were dead certain the post, etc. was clean, could not offend anyone who wasn’t trying hard to be offended, & when the offense is pointed out you wonder how you missed it.
10. Migraine &/or sinus headaches that get into a feedback loop on the pain, making the aches & pains worse which makes the H/A worse, & nothing much seems to stop it.
11. Itching, with or without rash or hives, with no exposure to any known allergen; thinking it’s one type of allergen only to find out you were in error; not knowing what to do. Finding that as itching worsens, pain lessens for a while before getting very overwhelmed by pain – but being grateful when the pain reduces the itch.
12. Hearing loss, accelerated if you already had it; sometimes accompanied by tinnitus (ringing in the ear) or feeling like your ears need to be “popped” all the time; feeling vertigo if the inner ear is affected; feeling like something is grinding in the ear & sometimes hearing a grinding or popping noise.
13. Voluntary muscle cramps & involuntary muscle spasms. Cramps are severe & often require you to walk them out for hours at a time, or else put 2 – 3 heating pads on. Cramping is not related specifically to activity, although pushing too hard will make it worse. Involuntary muscle spasms can cause nausea/vomiting, irritable bowel w/ either constipation b/c the spasms are so bad they won’t let anything pass, or diarrhea because they cramp, push things out too fast & too hard, & cause pain. Irritable bladder with frequent trips b/c the bladder spasms won’t allow you to wait until the bladder’s full, yet the stream is weak or intermittent (& in guys, there’s no prostate problem to cause it), & it hurts. Urine sometimes dribbles out before you can stop it, meaning you have to wear something to catch the dribbles. Sometimes, females stand up, then have to sit back down; either gender may have to get into weird positions & bear down as if they were having a BM, just to force urine out.
14. Hormones go nuts. Women will have hot flashes & what I call “cold flashes,” mood swings become the province of both genders. Depression shows up as guys lose testosterone & women lose estrogen, only to have them surge later on, with guys acting like some sort of “machismo man” while women become ultra feminine & sexually aggressive at times. Those aren’t the only hormones: The body senses if the system has too much acid relative to bases, or vice versa, & seeks to remedy it, sometimes causing a lot of thirst & bathroom trips as the body tries to cleanse itself. Variations in vital signs may be seen by the body as an emergency requiring the release of adrenaline with a corresponding rise in B/P & HR & a feeling of panic, especially if there is no outlet for the fight/flight response. Sometimes the excitement of actually feeling up to attending something when you’ve been feeling lousy will trigger this release, & when it does, the person ends up having to leave the event, at least for a while. Note that there are gastric hormones; if you don’t have enough of them triggered, you won’t be able to lose weight, digest/store food, etc. Harks back to the digestive problems. Possibility of developing SIADH (Syndrome of Inappropriate Anti_Diuretic Hormone, aka diabetes insipidus), where a person has endless thirst & is endlessly passing urine because the body is secreating the wrong amount of antidiuretic hormone (a diuretic is a water pill; in the absence of the hormone in the body that balances that out, the body will diurese, or pass too much urine). SIADH can, fortunately, be controlled by a nasal spray. Risk of problems with storage of food as glycogen (the storage in the muscles that is released when you exercise), which leads to eventually, the liver releasing too much glycogen (a food storage hormone) into the blood, eventually wearing out the ability of the pancreas to secrete enough insulin (a food storage hormone) after a while (at first, the body sometimes secretes too much insulin & drops the sugar, making the person hungry & storing all food as fat) & to use the insulin to convert it into glucose. This causes type II diabetes. The risk of the pills comes up because they might not interact correctly with the hormones that are out of whack. Insulin is tricky to manage at times but its closer composition to the other hormones in the body helps it regulate others, not to mention far better control.
15. Photosensitivity of varying degrees (sensitivity to light) and hypersensitivity to sounds – sometimes even in the presence of decreased hearing. Some people have to use earplugs &/or sunglasses/blindfolds & decrease light/sound to survive without triggering pain, fight/flight reactions with subsequent panic attacks.
16. Shortness of breath without, usually, observable pathology even though the inability to “catch one’s breath” is a very real, panicky feeling that stirs up more adrenaline & worsens the problem. Sometimes there are fibrous changes on X-Ray, but mostly there are not. There is also no evidence of sclerosis (hardening) or asthma (narrowing of airways). This is likely due to a central origin of the system v. a peripheral one. Sleep apnea is a common development in ME/CFS patients, whether or not they are obese/overweight.
17. Feeling shaky &/or weak inside, in the core of your body. Diabetics will usually have a normal sugar reading when this occurs. It may occur after unusual exertion, or may occur after relatively solid rest. It’s unpredictable & may be accompanied by syncope/falls. Those who have this symptom often have to use mobility aids so they don’t fall & injure themselves. This is especially difficult for younger people, although anyone under approximately 70 years of age is very likely to be told by their “elders & betters” how they are “too young” to be sick & are just exhibiting “attention getting behaviors” & should be “ashamed of themselves.” Then the final “curse” is added that because they “lied” about being sick, God will strike them with a “real sickness” & they will “find out what it’s really like to be sick, then they’ll be sorry.” Older people find themselves on the “losing” end of some perverse “who’s sicker” contest they never asked to join.
18. Drying of mucus membranes – dry eyes, dry nose to the point of pain, dry mouth that makes your tongue feel glued to the roof of your mouth, dry vaginas that interfere with having awesome sex. Means you have to have eye drops around all the time. And since PCP and other addicts use eye drops to take drugs with, you become suspected of being a drug user. At work, if you don’t hide the drops, you’re going to be peeing into a cup, with an observer close by to make sure you don’t put someone else’s pee in the cup.
19. Unable to tolerate extremes of heat & cold w/o having extreme pain, stiffness, etc. Having “hot” & “cold” flashes because your body’s vital sign control center can’t maintain a regular temperature easily. This sometimes causes fevers when you’re not infected with anything, confusing you because the malaise the fever causes is the same kind you get when you get a viral or bacterial infection.
20. Brain fog – can’t process information, as noted above.
21. Restless legs, clonic jerking during sleep, to excess (it happens to everyone sometimes, but with us, it’s worse).
Now, I know I haven’t touched the entire spectrum, but LOOK at this list!
EVERYTHING THERE IS CONTROLLED BY THE CENTRAL NERVOUS SYSTEM – BRAIN & SPINAL CORD. If you all wanted to be bored to death, I could tell you where the 12 cranial nerves go & what they affect; I could tell you, if I looked it up, what dermatomes or areas of influence in the spinal cord affect which part of the body. But just take my word for it. If you say “brain & spinal cord” (aka CNS or Central Nervous System), you cover all these symptoms, & they can’t be covered by anything else.
Meaning the only real term for this is ME. Myalgic (muscle pain related) Encephalitis (inflammation of the brain & spinal cord). If the brain’s inflamed, it’s going to:
1. Affect randomly almost any part of the body.
2. Affect the parts it affects with varying degrees of intensity
3. Change what it affects or add stuff to go wrong as it progresses
4. Disable a person completely at some point, without killing them
5. Screw up the messages to the rest of the body so badly you’ll wish you were dead sometimes, adding fuel to the euthanasia freaks’ fires (believe me, abortion’s already a right even when the baby’s coming down the vagina they can pith it like you pith a frog for dissection in biology class; so, who’s to say that to save money, any socialized medicine country’s not going to “offer” euthanasia, after first telling you that you have a right to pain control, then gradually trying to stop pain relief from getting to people – as they’re trying to do now with combination narcs with Tylenol & long acting pain relievers like MS Contin & Oxycontin, & for Heaven’s sake, trying to make Tylenol Rx only??? At which point, in agony & with no end in sight because doctors are still saying this disease is really imaginary, there will be a lot of people queueing up for euthanasia because they’re so exhausted with the symptoms.
It seems to me that it would be CHEAPER to just FIGURE OUT ME & FIND A WAY TO FIX IT. How can it be cheaper to consign everyone to some awful version of “Fantasy Island” where we punish ME sufferers because, what, all the male doctors have bad relationships with the women in their lives so they’d rather punish ME sufferers because 90% are female? Isn’t it pretty expensive to have the medical field divided on whether it’s real or not? To have them writing stupid, petty articles on “goldbricking” lazy people instead of researching it for real? You know, look for something you missed the first time around. Just like they did with AIDS. Find out how to detect it, or prove it’s not detectable no matter how hard you look. Put up or shut up. I am confident anyone who really looks will find stuff, the Whitmore-Peterson institute & similar facilities have proven that.
There’s only one real reason to keep blaming the sick people.
Maybe the conspiracy theorists are right…http://www.whale.to/v/scott.html.
This is me……..you’ve articulated all the symptoms I have.
Recently been diagnosed with CFS and fibromyalgia and it frightens the life out me as it is mentally and physically debilitating. Comimg to terms with dealing with these conditions is extremely difficult personally and incredibly hard to communicate to friends our family that it is so much more than tiredness without sounding like a hypochondriac. Suppose I will find a way of adjusting.
Love to all in the same predicament x
Amazing… I recognise most the symptoms because that is what i suffer from most of eh time. Thank you for posting and helping others understand.
I loved you post! You understand a clinician’s view of this disease. Thank you for taking the time to share your knowledge with others that purchase garbage books that promise to eradicate this monster disease. If I hear another physician say, “oh, you are just depressed”, I will scream!
wow sandy i feel like you are me….right down to the almost 8 yo son. tough to be debilitated w/fatigue, crave calm and quiet w/an 8 yo around….but it’s also what keeps me going on each and every day.
Over a year ago I was told by a neurologist that I had ME/CFS. I had been ill for 2yrs. It started with occipital headaches and then I was visited by virtually all the symptoms mentioned above. As he waved me goodbye with lack of interest he said it is mind over matter. My mind is strong. I was determind to beat it or find a cure. I want my life back. I read about a cure and researched it. I think the gist of it is: The hyperthalmus floods because there is no draining system in the brain (Lymphatics)This causes virtually every symptom associated with ME. Occipital pain to skin disorders and pain in the smooth muscle groups. That feeling like you have flu your eyes burn your body aches and you can’t breathe, think or talk. you don’t have the energy for thinking and talking and walking you have to choose which. Well apparently gentle exercise by an experienced practitioner massaging your skull can drain the brain of these excess fluids. I had a look on a web site and had a go at home. I can’t afford £90 a session. So far so good, almost all of the symptoms have gone. If I could get rid of the headaches the burning occipital pain I will have won. I might have to splash out for the final bit. I beg every day that it will go away and I can be me again; nearly there don’t let it beat you.
Jennifer Miracle says
I hate to tell you this but you better get to the Doctor right away and have your pancreas checked. My sister was just D.X. with Pancreas cancer and your symptoms are why she has been experiencing for 2 years.
The extreme itching and the burning are a big big clue on this one. As well as the swollen eyes , I seen her many times with this .
Vomiting is another sympton.
I believe she has been having pancreas attachs for years but we did not know what it was. Her pancreas is riddle with cysts and tumors , the Doctor said she has had this condition for at least 5 years, I think he meant just pancreas attacks not cancer . All this irration to the pancreas causes mucin to build up which can be deadly. Her Cancer is in the Mucin .
Please ,Please get checked , I believe you may be able to take digestive enzymes and prevent this progression. Your symtons are a ringer of hers right down to the ringing ears.
I don’t get some of the symptoms (like itching and some others), but I get a lot of them. The things that annoy me most are the emotionalism, constant tiredness, not being able to say what I mean/say words sometimes, and the lungs. I feel like I cannot take a breath! It feels like someone has put a vice around my lungs and I struggle to breathe around it – and when I take a deep breath, it does nothing for me! I remember when deep breaths used to make me feel good… now they make me feel worse because it doesn’t work!
Something that helped me a little is taking iron – I had terribly low feratin and will need to take iron for the rest of my life. Something I am going to look into is vitamin D deficiency – that can add to fatigue issues also. If you cannot stand bright light, go get your vitamin D levels checked, you might have a deficiency that is adding to your tiredness and depression and several other symptoms.
By the way, does anyone know anyone who has recovered from CFS???
Sandy Robinson says
Hi CJ, I don’t know anyone personally who has recovered from CFS.
Yes, many. Buy a book called Recovery from CFS. There are 50 stories of cases of recovery trying different routes to fit what works for each person.
I have just realised I have this, have had symptoms for many years but not all the time which has confused me. However, I am now experiencing all this full time.
A friend of mine is back to full health after working with the Optimum Health Clinic in London (Skype and phone sessions possible) . I start with them soon. All their practitioners have had ME/CFS and made a full and amazing recovery. Good luck. Xxx
dianne mawhood says
tick all of the above for me too Had M.e for over 30 years.Mostly bedbound.note I said M.E not CFS. I refuse to use the latter name . what about dribbling? not nice but it happens . Like a stroke victim.Rashes- i have had them down my arms twice -huge ,burning, red ,raised , staph infected . lasted for about 8 weeks both times .Doc said drug erruptions but didn’t make sense to me. have lesser one now on right shoulder. crying painful .Only tiger balm helped.Didn’t hurt . Cooled everything down for about 4 hours and relieved pain. made everything orange but who cared . blessed relief and some sleep.
i am using Low Dose Naltrexone and after 30n years of trying so much I can honestly say it helps.Check out the LDN website if you want to learn more.
Anyone get the night terrors with hypnagogic and hypnopompic hallucinations? The other night I hightailed it out of bed at lightening speed after seeing someone by the bedroom door. She started coming closer to me and my husband who woke up said there’s no-one there and I said, yes there is, she’s right there and I started waving my hands through her body and as I did so my arms and hands became a blue colour like she was. Once I touched her, it was like she was see-through. Even when I feel that I’ve completely woken up, I can still see the hallucination as if my brain is still asleep, and I will even think at the time, I’m wide awake and I shouldn’t be seeing this. I’ve seen so many spiders crawling across the ceiling that aren’t even there. I’ve been getting night terrors and having hallucinations since I got ME 9 yrs ago and I’m also getting auditory hallucinations now. The CFS clinic I went to last year, said it wasn’t normal, well no kidding, none of the symptoms we get are normal. I’ve had over 50 symptoms since I got ill with ME and most of the above and although my Neurologist acknowledged them as being part of my illness, the CFS clinic I went to would only acknowledge fatigue and 8 other symptoms under the Fukuda Diagnostic criteria they used there. They weren’t interested in any other symptoms, which makes the CFS label they favour, so broad and unspecific as to not describe adequately our illness ME at all. They were even claiming on their website that CFS was hitherto called ME, but they didn’t acknowledge any of the other ME symptoms that we know as being part of our illness. Hence, I came away from there with a diagnosis of CFS (which they said was all about fatigue) and 2 other syndromes, (all previously diagnosed as part of my ME), a couple of other diagnoses and a laundry list of other symptoms that they made all seemingly unrelated, but weren’t. I could fit my dead mother into a CFS label, but she didn’t have that, she had Crohn’s disease. They are trying to make our illness non-existent and to make it disappear. Dr Malcolm Hooper calls it “Magical Medicine” How to make an illness disappear!
I’ve been doing the Perrin Technique into my 5th year now, daily lymphatic massage exercises. I saw Raymond Perrin on and off for a year, but did regular weekly treatment (cranial sacral therapy), manipulation and lymphatic massage with one of his trained Osteopaths on a weekly, then two weekly basis for over 2 yrs and I can honestly say that if I hadn’t done this treatment, my health and activity levels wouldn’t haven’t improved to the extent that it has. In ME, the lymphatic system isn’t draining properly, causing a backflow of lymph fluid full of waste products into the central nervous system. Only downside apart from the cost £32 a week is you have to get worse before you start to improve, but the worse you get is a good sign that your ridding yourself of toxins. I will do the Perrin Technique for life now, but I should think that any type of manual lymphatic drainage massage would probably help.
I was told that my silent migraines the ones I see zig zags and white flashes are hallucinations and that I could actually be seeing what you are talked by about. I am not able to read your whole post as I get to tired reading.
I get the shortness of breath and feel stressed very easily. And the computer makes me tired but I am a bit addicted to it…
Sue, it is possible that what you saw was a spirit (possibly not the spiders but who knows?), sometimes when people are ill they can become more spiritual. I haven’t personally seen much in the way of ghosts, etc. but many people do.
It’s weird reading the above, nodding my head in agreement with most, yet a nagging voice in my mind shouting “it’s just your imagination, hyponchodriac!” %-( I truly wish it were!
I was medically retired about 6 years ago due to a combination of sleep paralysis (SP), apnea and subsequently diagnosed fibromyalgia (FM).
SP I have endured for over 20 years, one symptom is the nightmares and hallucinations mentioned by Sue. On waking, I am unable to move any voluntary muscles for a period varying from a few minutes to a few hours. When it wears off, I am left with muscle spasms, weakness and tremors which never totally go.
FM has “gifted” me with a loss of stamina which, if I force mysellf to go on, knocks me out for a couple of hours, sometimes more; also the “brain fog” others describe – I can’t focus/concentrate without great effort and then on only one thing at a time, being easily sidetracked and forgetting what I was doing. I guess it’s all short term memory – I can put the phone down and not recall who I’ve spoken to or about what 🙁 One reason now I refuse to enter into any conversation with cold callers – I ended up receiving a new mobile phone contract with no recollection of the conversation.
Lately I’ve started having an annoying high pitched sound whistling in my ears almost constantly, but read that there is no treatment for tinnitus so … just one more straw %-) I guess it may serve as a spur when I feel as tired as I do now, having got nowhere fast so far today.
The major emotion I’m left with is frustration hitting the bottom of my energy barrel while there is still so much I want to do! grrr! %-)
I can see where medical services go wrong – each specialist looks at their area without seeing the whole of you if you see what I mean, it’s left to a GP to put all the parts together. Ideally, the neurologist, rheumatologist, etc. would see you all at once and bang their braincells together to come up with a unified diagnosis and treatment.
Hoping you all have a better day than the one before (((hugs)))
Susan Murphy says
I have had the difficulty in breathing thing recently and it is awful! I always notice I have loose stools and extreme fatigue when this happens. Recently I discovered my ferritin is low at 11. Some think this could be the cause, others don’t think so. Can those of you with CFS and shortness of breath tell me what your ferritin is?
My ferretin level was at 9
I’ve recently been diagnosed with ME/CFS/FM after many years of suffering without knowing… One of my symptoms has been shortness of breath which has always been treated as anxiety, I often felt anxious with the breathing difficulty but never seemed to be ble to explain it properly!
Ringing ears/ muffled sound/ burning eyes/ dry eyes/ itchiness – alongside all the ‘ classic’ symptoms = a crap life until I learn to manage it!
I’m really glad I found this thread. I’ve had ME for more than 15 years and didn’t realize that a lot of my weird symptoms are because of it. About 12 years ago, I started getting the major eye burning, then my heart would raise and feel like it was going to pop out of my chest, especially when I ate sugar or almost any kind of grain. I would get body aches and my elbows were tender to the touch. Finally, I was forced to eliminate a bunch of foods and lost almost 30 pounds in a month. During this time I had pelvic pain and yeast infections. I was tested and even treated (without my knowledge) for STDs. Test came out negative. Doctors were stumped. I was reading up on Candida and following the diet. Eventually, I started feeling better.
However, I would still have the muscle twitches in my face and eyes. I felt tired all the time and sleep just didn’t do anything for me. I also had severe depression that lead to me gaining on the weight and much more back.
As of now, I have the muscle twitches in my eyes and face. Sometimes I will get a numb feeling on one side of my face and it feels like my lips is being pulled to one side. I have Epilepsy that has been dormant for over 10 years, so I believed this symptom was due to that. Now, reading your post, I wonder if it’s ME.
Also, on days when I’ve pushed myself a lot, my voice gets raspy and my eyes get small like they want to close. Many mornings I wake up with a puffy face and I get this race or red blotch on my upper chest area. Something really weird has happened lately. The bottoms of my feet will just itch for now reason at all. Itch so bad, I want to take them off and scratch them. They also hurt, even if I’ve been home and not walking much. Simple housework makes me feel sore all over. My hands ache and feel weak and tender. I get muscle spasms in my lower back (Sciatica) and can’t carry anything too heavy. I will get severe pain in my legs that feels like it goes down to the bone. Unexplained bruises and small scratches on my fingers that burn when something gets in there. Memory is shot. I have suddenly forgotten my debit card pin number, forgot why I went to the store, forgot where I put my keys. I could go on and on. I had severe knee pain that lasted for almost a year. I couldn’t walk without it hurting and it was too tender to kneel on it. I had an x-ray that showed inflammation. The knee pain went away on its own, eventually. I still have sore knees, though. I get really cold and shiver when I lie down at night. Shortness of breath, walking around in a fog, seeing patterns or bright colors appear on the wall as I’m waking or falling sleep, vibrating in my body as I’m going to sleep, feeling like my breathe is being sucked from me when i lay down.
I get anxious for no reason and suddenly feel like I can’t get through my day. I also get this feeling in my head like it feel asleep and sometimes that its not attached to me. It gets so severe sometimes it will lead to a headache and I’m forced to lay down. Just about anything can make me dizzy. Changes from the carpet to the floor, the patterns on the floor, going up stairs and looking over the railing. I just forget words and spell them the wrong way. If I sit down long enough, I can fall asleep anywhere. Recently, I’ve started having spasms in my shin that make it difficult for me to walk when it’s happening. Sometimes when people are talking to me, I can’t respond the way I want to and I forget the subject in the middle of conversations.
Some of these symptoms are quite common with temporal lobe Epilepsy, so its difficult for me to figure out what’s causing all this weirdness.
camilla koch says
im so thankful 4 this website I have dealt with alot of these symptoms for many years just not so chronicly as now one symptoms really stands out I never connected to before is about 30 years ago my first husband couldnt sleep with me for the heat readating off my body one woman mentioned something simular otherwise the rashes and all the other symptoms Ive experienced thank you so much everyone for I no longer feel so alone anymore
ALL THE SYMPTOMS YOU DESCRIBED I HAD THEM, I ALMOST DIE AND I WOULD HAD IF I REMAINED LOOKING FOR AN ANSWER IN THE USA. A FRIEND OF MINE TOOK ME TO COLOMBIA WHERE THEY TOLD ME I WAS INFECTED WITH A MICRO-PARASITE. THEY PUT ME IN THE HOSPITAL AND IV ME WITH A HIGH SPECTRUM ANTIBIOTIC. AFTER 2 WEEKS I STARTED RECUPERATING AND NEVER MORE FEEL THOSE WEIRD SYMPTOMS. US DOCTORS DO NOT KNOW MUCH ABOUT PARASITES. THESE ORGANISMS ARE EVOLVING AND ADAPTING TO HUMANS AND HAVE FOUND A WAY TO SUPPRESS OUR INMUNE SYSTEM. SEROLOGY DOES NOT SHOW THE PRESENCE OF IT IN OUR SYSTEM. IS LIKE AN EVIL GHOST LIVING INSIDE YOU. SEARCH FOR CFS AND PARASITES AND YOU’LL BE AMAZED OF WHAT IS GOING ON.
Sue, during my worst period I had all the symptoms above and was diagnosed with Cfs. Then I started having severe night-time hallucinations (curtains opening and closing, things flying around the room, people by my bed, spiders crawling up me and one time, my boyfriend’s head rotating 360 degrees!). All this was accompanied by sleep paralysis so I couldn’t move – the hallucinations would usually disappear with the paralysis. The doctors told me this was nothing to do with Cfs and tried to diagnose narcolepsy. But I’m convinced the symptoms were Cfs related. I’ve never heard of anyone else with even vaguely similar symptoms before though, so reading your post was a revelation! I found cutting out wheat made a massive difference; no idea why!
Re the eye thing. Recently I’ve been finding that my eyes fog over for up to half an hour at a time – it’s like looking through a room full of steam. Do other people have this??
Yes all this sounds too familiar. Two stranger things are insects tend to bite me and only me more during summer and I here buzzing near high electrical items, lights etc.
I’ve read that mosquitos like/dislike? (brain fog) potassium so the insects thing is probably due to the fact that we have imbalances in all that crap.
The high pitched buzzing is just you’re more sensitive to sound. You’re hearing the electricity. Most people only hear it at places where there is a lot of electricity, we can hear it other places too.
Tracy Rovensky says
First let’s start with: THANK YOU for this web site
I am an ex-fit person, trained at least 2hours a day and worked full time. With in 8 weeks I have no breath, sweating, weight gain and the inability to cope well with any situation even ones I once could only 8 weeks ago.
I just went through my wardrobe, I have had to go shopping for new clothes to fit. I don’t rekonize myself physically, emotionally, personally.
I DON’T KNOW WHO I AM ANYMORE
Hang in there! I always suggest that if you experience symptoms that are new that you see a physician. This site is not meant to diagnose or treat, but just to share our experiences.
Best to you!
Kathleen Berry says
Yes know what u mean
I solved the problem of light sensitivity by taking magnesium citrate recommended by Dr Teitelbaum. This also helped with the fast heart rate I experienced at times -and all my muscle aches.
I experienced night sweats(usually between 12 mn to 3am) long after the menopause – mine were caused by my Liver – it was working overtime to clear the toxins from my body. They did not stop until I started a seriously detoxing with supervision.
Ringing in the ears has many causes. Mine was common with ME – heavy metals in my bloodstream. Cleared with the detox.
Trish foster says
This week I experienced the usual very swollen legs but this time it was followed by a skin rash of red spots on my legs. The rash was neither itchy nor raised, but was unsightly. My skin however has become dry & itchy but I put that down to onset of Menopause. I have as well started to get recurring sore throats & swollen gums & reactive lymph nodes in my neck. My Pain & fatigue is throughout my body & I do at time struggle to climb stairs & walk distances with out experiencing severe pain to the point of feeling as though I could collapse. Folding clothes when doing laundry cause the same thing to happen in my arms. I have been prescribed Ferrous Sulphate as it was discovered that if levels in the blood fell below 50, sufferers with ME/CFS symptoms worsen. But alas this has made no difference to mine in fact I do feel worse. My worse symptom is the constant pain from muscle spasms in my neck. The muscles are taut on pain full, this makes me miserable as no amount of pain killers easer this. I was at one point prescribed Diazepam to relieve the spasms but was warned not to take them regularly as they’re addictive. Some days I find it hard just to get out of bed but I do. I find I hard to get dressed & some days I don’t as my reserves of energy are so low. I have days when I feel I have a tight bad around my ribs & upper abdomen, I’m not sure if this is my diaphragm. Like many of you I also feel nauseous, I have bowel problems IBS which can be both constipation & diarrhoea all in the same motion. I have also fainted when in pain from passing stools. I do a times ignore my warning symptoms of aches & pains & fatigue,& have pushed myself just to be able to have a social life only to be left exhausted & depleted of any energy reserves. I have been to cognitive behavioural therapy & I do know better but I feel my life just worthless if I don’t make an effort. My pain sometimes is so deep I don’t know if it’s my muscles or my bones or is it my brain playing tricks????? I needed to off load !!! I hope you people didn’t mind
Kathryn Hinder says
Hi. I am so glad to hear everyone else’s comments. I didn’t know what was wrong with me but now I see it’s definitely CFS and my doctor has ‘sort of’ diagnosed that recently when I pushed for some sort of explanation. It’s not anemia or depression like we first thought. I relate to the breathlessness, the anxiety, and just needing heaps of sleep. Some days I need to rest after just getting up and dressed, making the bed etc. It does suck. I have to work from home so I can pace myself and not have to face the stress of dealing with people – as that totally whacks me. Luckily I enjoy my own company and that of my animals (I adore animals!) but it does impact my life hugely and I don’t know when or if it will go away. I think I’ve had it for over 15 years now.
Relentless itching – check.
Light/sound/smell/touch/taste hypersensitivity – check x5.
Orthostatic intolerance – check. Apparently I have low/normal blood pressure.
Sweating, inability to maintain a comfortable body temperature – check; I get hot/cold very easily. The only way to deal with this is to layer my clothes so I can adjust them as my temperature changes (I say temperature but my actual temerature is normal; it just seems to be the signal my nerves send saying I’m hot or cold that’s overactive).
The sweating also may be aggrravated by the antidepressant I’m on; Effexor/Venlafaxine.
Restless body syndrome – check. I get RLS but all over my body when it’s at its most severe. Getting too hot triggers it, mostly in bed but I think that’s because that’s the only time where I’m too warm where I’m not moving.
Insomnia – check. Some nights I’m so awake that I feel twitchy but my body is telling me it’s sleep time.
Sore joints – check. The stiffness/pain in the feet in the morning is something I get, but I also get stiffness in my hands. It worsens when it’s cold, even though I don’t have arthritis.
Nodding off – check. I’d say almost narcoleptic except it’s because of the fatigue and only happens when I’m still. I’ll stop moving and fall asleep. It can be a real pain to sit down and try to read a book, do things online, listen to music, or any of the other things someone forced to be sedentary does to kill the time.
Irritability – check. This is because of being tired all the time. When I have to describe what it’s like to people who don’t have CFS I explain that it’s like living on a world that has higher gravity. It’s so much more of an effort to do everything and everything feels like it’s heavier.
Brain fog – check. I also get the thing where you can’t find the word, even simple things you use a lot or the names of people you know in more than passing. The fog makes thinking as mentally fatiguing as doing things makes me feel physically fatigued.
Shaky feeling – check. It feels like my blood sugar is low, even when I’ve eaten enough, and I’m not diabetic. Eating sweet things can help but I think that’s because it gives me an extra boost of energy.
Nerve pain – check. Sometimes I get random nerve pain.
IBS – check. I’m fortunate that this is comparitively mild. I take a fibre supplement and that seems to help.
Sore throat – check. Sometimes I get this but not often and it’s always brief.
Shortness of breath – check. However, I have exercise induced asthma so I’m not sure if this is due to asthma complications or CFS.
Vertigo – check. When I get vertigo from CFS it is infinitely preferable to the vertigo/brain shock I get if I forget my antidepressant, although that is again preferable to the depression!
There are probably other things I’m forgetting since I forget a LOT!
To the people who feel like they’re not doing the things in life other people their age are (like me some of the time!) my psychologist said we have something that most people don’t. The ability to have great determination against overwhelming odds. We think of it as just doing what we have to do to survive but he said there are plenty of people he’s seen that lack the capability. It is a skill just like any other and we are pros.
Hugs to all. Always keep fighting. #AKF
Mary Fox says
It’s now 2016… Has anyone improved and found help?
Do you guys also get what I call ‘feeling scrapey’? As if every cell is uncomfortable with a kind of scraping sensation? It especially affects my brain and muscles but I can even feel it in my lips at times…
Kathleen Berry says
I have had cfs since 2004, in Australia, they have found out it is connected to the immune system,wich I guessed. Lets hope one day they will find a cure.at least someone is trying.it’s hard and scarey at times, just make the best of the good times.
Nausea is absolutely an ME/CFS thing! I had a bunch of tests done for it while I was working… eventually I stopped working, and with rest, I’ve found that I usually only get nausea when I’m pushing myself to stay up when I really need to rest. If I rest enough, then I’m usually nausea-free 🙂
Losing your vocabulary & speech comprehension is a big issue, too. I used to need my coworkers to sometimes explain stuff to me 3 or 4 times…. before I’d smile & nod, and hope that whatever I caught would be enough to go on. I’d constantly fumble for words as well. I’ve always had a really good vocabulary & been good at communicating, so that was scary to have that diminish. I’m so glad that it was one of the first things to bounce back once I started caring for myself properly.
Speaking of which, one thing I noticed with ME/CFS is that although poor concentration is a pretty commonly known symptom, the way that it affects you when it’s as bad as with CFS is pretty nuts. I had to stop driving after a few times where I just flopped – once, I was driving down a main road in a neighbourhood I lived in for years, and that my sister now lives in. I was leaving a parking lot when suddenly I forgot where I was. Like, I knew what neighbourhood I was in & recognized the road, but where I was in relation to everything else, it was like it was just gone. I drove up & down that road looking for the turnoff to my sister’s place for like 20 min (it was only like 3 min away). That was jarring. The time after, my sister was in the passenger seat, and kept saying things like, “Stop sign. Red light. Pedestrian.” I swear she stopped me from getting all kinds of tickets, and possibly hurting pedestrians (yes, plural) that day. After that, I just decided to stop driving. I suppose I could do short bouts of highway driving (since it’s simple, but even then the fatigue means I can’t do it for more than an maybe an hour or so without really, really feeling it).
Reading is another thing I struggle with, which sucks cos I’ve always loved it. But now I find that after a couple of pages, I can’t focus anymore, and keep doing that thing where you have to re-read a sentence cos it doesn’t stick in your head long enough. Even a 4-5 page short story can take me like an hour to read. I feel like a goldfish.
Firefly: have you had your thyroid levels and iodine levels checked-what you describe could be a combo of low levels of both. Susan
Karon Whitmire says
I have the same problems with naseau, dizziness. I can’t drive because I forget where I park. It took me several hours to find my accountant office. Reading I have to constantly re-read sentences to try to comprehend. It a few of many symptoms of ME/CFS. It is hard. I had to quit work because of so much going on.
I have pretty bad shortness of breath from doing just about anything. Also someone here mentioned ringing in the ears, mine gets so bad it’s nearly unbearable. Fatigue, paresthesia, brain fog, yes. after going through several docs and specialists I finally got a GP who takes me seriously and diagnosed CFS. He also sent me to a neurologist who diagnosed small-fiber neuropathy as a fun little “extra.” Lyrica helps with the paresthesia, weird feelings in my arms and legs. Started feeling better a few months ago after months of rest, so I got ambitious and took up tai chi. Big mistake. This “gentle” exercise started up all my symptoms again after about three weeks of fun. Very frustrating! I feel my muscles deteriorating. Anyway both docs recommend daily walks of short duration, perhaps getting longer over time, so I’ll try that. Thanks for listening.
I just wondered if there is anyone in the Yanchep/Alkimos area in Western Australia, who has CFS/ME? Would be nice to have a friend face to face – not to whinge, but to laugh about it all. What else can you do?
All i can say is thank God for tbese posts. I suffer with all of tbese symptoms (except vibrations) i thought i was either going mad or becoming a manic hypochondriac!
The itching drives me insame as does the light sensitivity. I also have sound sensitivity and can no longer converse if the tv is on or there is other sound in the room. Its like all sound is at the same volume.
The 2 most distressing symptoms i have though are severe insufferable pain in my hands and fingers and twmperature problems – its like my body thermostat is broken. If i sit in the sun for too long, i lose control of the muscles in my face and my face will fall on one side. It looks almost like a stroke but there is no bleed on the brain as a stroke victim would have.
If the temperature is cool i become so cold i shake violently almost as baf as someone having a seizure. I catch every bug going and usually end up in hospital and now have to rely on a nebulizer and inhaler because of having pneumonia so many times. I live in the UK so the weather is very irratic here.
Your posts have really put my mind at ease thank you all so much x
Sorry, but I read all the above stories and what you are describing are symptoms that belongs to a hormonal imbalance, premenopause or the beginning of menopause. I know that because I have the exact symptoms and I have years of battling an early menopoause. I have the same symptoms as everyone here but I have an hormonal imbalance and suffering from a lot of symptoms that are following a pattern each month. Symptoms comes and goes and a lot of symptoms never goes away. I know a lot of women with menopausal symptoms, early menopause problems who are having the same issues all these women have who also have the diagnose ME/CVS. I really think that ME/CVS has everything to do with hormones. Otherwise I would have also ME/CVS. No, I have POF and ten years of symptoms….. including migraines, tinnitus, and numerous of neurological problems including all the symptoms you are describing.
I had a Hysterectomy in my 30’s so went through early menopause in my early 40’s but am now in my mid 50’s and I still have the hot flushes but now I have Tinnitus which started about 3 yrs ago and Dr does not know why. I wake up every morning with a headache on one side of the head which goes after about an hour (once I am up) I have terrible muscular pains in my back, arms & legs. I feel tired all the time but then never sleep properly. My eyes itch and I also get a horrible prickling sensation on my back, My feet burn at night and I have to keep them out from under the duvet and have a fan on and the skin on my feet can go suddenly very red.. I have palpitations and Dr sent me for a ECG which was normal. I have spells of nausea and feel lightheaded. Even though I have Tinnitus, I am very sensitive to sound and can jump at sounds that normal people do not. I get very moody for no reason. I sometime feel a tremor under my feet and it feels like I am stood on my mobile and its vibrating. I have told my Dr all this but he just looks at me like i am mad! Although not diagnosed I am convinced I have CFS especially after reading what other people have written and reading
Anna: Guess what-hot flashes don’t end for some people. Some people have cold flashes too. (This also happens in males when their testosterone is low. My husband had hot flashes and severe depression. The doc found out it was low testosterone. He also had “0” growth hormone and was later dx with a pituitary tumor.) And if one hormone is out of wack-the other ones which are trying to compensate could be out of wack too. Adding to this is when as stressful situation occurs and the body is not able to compensate. We are also exposed to environmental chemicals/pollutants which can disturb our endocrine systems.
Oh and I also have problems getting words out which is embarrassing.
Abby A says
I used to be in a fibro support group and we always joked that our motto should be “Too Itchy. Too loud. Too bright.” ! I had super bad itchy skin when I first got my fibro symptoms – gave away half the clothes in my closet which were suddenly unbearable. Gold Bond lotion is great help, though.
Also I have an extreme version of what I call “Startle Response”: If someone comes up behind me & surprises me, basically ALL my muscles seize up instantly. I’ve talked to many other fibro folks who have this as well.
I’m in the middle of a rough day can’t speak and can only use my left arm. I’ve upset everyone and now I feel so alone and I’m in between them changing my medication so am cold turkey with no treatment apart from a cream my mum got me. I feel I’m just ruining everyone’s lives at this point, my partner is in his last year of university and any time he has some mega important deadline I get sick, so I’ve now successfully upset him, my carer and my family by having a bad day and they all are so supportive all the time but I don’t think they can keep doing this. I hate the fact I’m laying in bed crippled with pain, typing with one hand and having a good old cry. Please someone tell me this will get easier at some point please. This is Year 4 for me and I’m moderate/server depending on the day and time of year. Spend most of my time in bed or the sofa and get out 2 or 3 times a month. There is no support from my local authorities they offered a carer for 30 mins a day?!? Where do I get help from and what meds actually work? I’ve tried neurontin, Lyrica, Ammitriptaline, sertraline, zapain, sopadol, magnesium and various other vitamins all of them working up to the highest dose and nothing I’m so fed up and frustrated right now. Sorry if I rambled or this doesn’t make sense just needed to vent x x
I didn’t mean they worked at the highest dose more I went from the lowest to the highest dose and none of them worked x x
I know how you feel. I am into year 7 of ME/CFS. I am 40, and also starting with peri menopause – the two together are horrendous….as far as help goes, I’ve found nothing! There is a clinic near me that specialise in it but its so expensive plus my GP won’t refer me unless my bloods show certain levels, which is ridiculous as I feel horrific. I just wish they would take us seriously.
As for how you feel in yourself, I know that feeling. Feel like a burden to everyone around you. Thing is, we are unwell, and people need to be patient and research it! We never asked to be like this (who would!). I hope you are ok? X
I have awful sore burning eyes, and blurring, terrible weakness and when walking very unbalanced, does anyone have pain in lower back, in sacral bones above buttocks and pain in legs, no strength to do anything, ringing in ears, nausea especially in morning, this came on after a bad throat virus, did this start after a bad virus? That’s what I would like to know?
Karon Whitmire says
I want to know if anyone ever have episodes like having heart attack or stroke? I was diagnosed with ME/CFS. I have brain fogs, slur speech, words don’t come out right nor can I finished what i was saying. I get sharp pain in my ear, left eye and my eye get drooping, blurry, junk in it, etc. I get numb sensation on left side of head. Facial, lip numbness. Jaw pain. Stiff or painful neck. Sensitive to light, smell, sound. Can’t handle sun shinning through blinds, ceiling fan going with light making throll light, flare off cars, headlights, etc. Trouble swallowing food. Get choke or start coughing. Swollen lymph nodes under arm pit and groin area. Can’t stand to wear bra or panties when the lymph nodes swell. Shortness of breathe.. hard to describe but it feels like someone punched me between rib and stomach. It is so painful d cannot breathe. Itchy skin all over and rash on face, arm, etc. Sensitive to cold air. Break out in welps. If I scratch on the welps, I bruise. Feel like either pins sticking me or something biting me on my legs, feet. Pain different parts of my body. Headaches but not so much like the migraines. Hard to explain. Dizzie spells. Stagger because of balance. Nausea. Motion sickness. Panic/anxiety attacks. Pain under right rib cage wrap around to back. Bowel problems. Either diarrhea or constipated. I get mentally ill, frustrated. It is tough coping with all these symptoms. I have been sickly over 30 years. Got sent every where for opinions even psychiatrist. Got treated like I was a mental case. Working job has been so difficult. I have changed jobs so much trying to handle the job. Employers don’t understand but can you blame them. Family members tries to understand but it gets too much for them. No social life. Can’t exercise. I can’t even walk around in a store. You find yourself resting because I stay tired all the time even after I rested. Sleepy. But I can’t sleep. Maybe get 4 to 6 hours of sleep. Can’t stand especially my legs, ankles touch the mattress. I have sleep apnea. I stop breathing. I start choking. I have bad palpitations when I lay especially on left side. I get to dropping things. I can’t do housework, yard work, etc. I do a little bit, tgen have to rest. I can’t breathe. When I shower, as soon as I get out I have to lay down. I could go I and on. It is a horrible disease. It has killed my immune system that I can’t fight off anything quickly and I get things quickly. But it was relief when my doctor finally could tell me what was wrong with me. I remembered I cried. Over thirty years trying to find out and finally someone believes me. It is a blessing that we can share about it. It helps make you feel not alone and your not crazy.
Oh YES!! I have been Dx’d w/Fibro & CFS since 1995!! I had to do the research after only 1 Worker’s Comp Physiatrist knew what the Hell was going on!! Not all MDs are on board w/ even acknowledging its a REAL illness!! The speech that is slow to get out words is called Aphasia, part of the profile!! You’re NOT crazy!!
The chest pain is Poss. Intercostal ( rib muscles and possible combo of GERD causing chest pain! My Cardiologist put me on Gen. Prilosec and it fixed the “chest pain” severity! She stated it was NOT true cardiac pain!!
The inability to hold things is related to CFS .. your body is
SO fatigued you drop things or csn never finish what your start!!
As referenced to eye issues.. DRY Eye Syndrome is also part of Fibro!! I can no longer tolerate my GAS PERM
contacts! I barely tolerate daily (EXPENSIVE) Daily softs!! W/ MOISTURE!! I also have beginning of Cataracts!! Also FIBRO related!!
RE: jaw pain.. that hoo is Gibro related!!! TMJ!! Bearing down and grinding your teeth ; part of the profile!!
Sleep Apnia… also part of the profile!! You stop breathing in your sleep!! You need a CPAP to push in the air… reduces all the nocturnal trips to the potty to urinate!! Also helps w/ headaches.. & Fatigue.
Sinus infections too… part of the profile! I get them one after the other inspire of 3 Maxi Facial Sinus surgeries!! I use the Neto Lot!! My ENT adds Abx to the sterile saline washes ( 3X ) daily. He wants to < my whole body bring exposed yo Abx snd rodk becoming a MSRA Pt!! So it’s only in the nasal rinse w/ 10 mos of STERILE water NEVRR TAP WATER ( causes fungus close to your brain that CAN be fatal!!) 1/4 tsp is fine pickling salt (Non iodized) & a pinch of baking soda.. warm the H2O a bit for comfort ( brain freeze!)! ADDING the Abx from a compounding lab (mail order) as in IV form of it! (Cheaper!! AMAXING all I had to endure to confirm I was NOT crazy!’
Also had 5 Carpal Tunnel surgeries( bi-lateral!!) from writing/ typing demands of my job!! ( I tried to write left-handed to not be fired and injured my L hand/wrist too!! I evdured all the P/T to “strengthen my hands… the Therapist didn’t know I ALSO had a R/Impinged Rotator cuff injury from the nerve damage working its way from hands to wrist yo elbow.. shoulder .. to spine!! CRAZY!!
All in all… I fin the research but found some recent research that knocked my dicks off about Sinisitus snd fungal infections… being related!!
I’d send them to you but Google “is Sinusitbeelated to Fibromyalgia Profile?? Snd poif!! It’s anout entry 2 & 3!! Blew my socks!!
Oh.. puraformis Syndrome / Sciatica is related too… hip pain!! I also found disc issues.. spinal stenosis, Analkalizing Spondelysesis… Facet Symdrome.. are ALSO seen in Fibro patients!!
PS: I sleep on a memory foam wedge pillow! Helps w/ the GERD & breathing!!
You’re NOT crazy!!
Corrections: 10 mls of sterile water…
Knocked my SOCKS off…
SORRY… I’m not potty mouthed person … (typing in iPhone)