Last up in our CFS Symptoms Series is discussion on the flu-like symptoms, chills and night sweats, headaches and sore throat.
Dr. Jacob Teitelbaum notes in his book From Fatigued to Fantastic that:
“…the most notorious pattern seen in severe chronic fatigue states is one in which a person who is feeling fine suddenly comes down with a brutal flu-like illness that never goes away. The sudden onset of the illness after an infection is a mark of this classic pattern.”
When I first became ill, I had either walking pneumonia or a very severe case of bronchitis. After that I was never the same again. I do blame myself for some of it because I was ordered to be at home in bed and I would not quit working. I often wonder if maybe my CFS would have been prevented if I just would have listened to the doctor. Who knows. I could have possibly already had CFS, as I was always sick and tired growing up. This illness and lack of rest could have just added fuel to the fire.
I have heard a lot of people with CFS say that they thought they had the flu that just never went away only to find out they would just get sicker and sicker. Along with the flu-like symptoms comes the achiness in both the muscles and joints, which is also common in people when they have the flu. But this type of achiness is such that Tylenol and even a lot of the prescription painkillers fail to ease. For most PWCs, the achiness comes from the disordered sleep, low thyroid function, yeast infections and nutritional deficiencies.
When my CFS is acting up, even my teeth hurt. I know that sounds weird, but it’s true. The pain I have in my back, hips and knees is like a gnawing or it feels like someone is ringing out my muscles like you would a dish rag.
Also with this achiness and pain comes muscle weakness. I have spent many times at the supermarket driving the handicapped carts because my muscles were so weak I could barely make it into the store.
Along with the achiness, PWCs often complain of pain in their lymph node regions. My armpits will hurt so bad that I can’t keep my arms down at my sides.
The chills and night sweats associated with CFS are severe enough to keep PWCs awake at night and at times mine are so severe I feel like I’m going crazy. I imagine it is kind of like going through menopause in a sense. I will go from one extreme to the next – one minute I am soaking wet because I am so hot and the next minute I am so cold it feels like the cold is going down to my bones and no matter what I do I can’t get warm. My husband says there are nights that he can barely stand to lie beside me in bed because the body heat coming off of me is so severe. He said he doesn’t even have to be touching me and he can feel it.
The first few years I was sick with CFS, the sore throats were always my warning sign that I was going into a flare or that I was overdoing it. The sore throats associated with CFS are not a typical sore throat that just makes your throat a little scratchy. If you have ever had strep throat and know the pain associated with that, that is how I would describe the sore throats with CFS. I have not been able to find much on why it is believed that we have these severely sore throats. I would like to find some information on that if there is any out there.
The headaches associated with CFS are also not your typical headache. The diagnostic criteria states that the headaches must be of a new or different pattern than what has previously been experienced. The headaches can be severe to where you think you might be having a migraine at times, except migraine medications do not help.
I am on prescription painkillers daily for the headaches. I have a headache all of the time – 24 hours a day, 7 days a week. The painkillers do not completely rid my headaches but they at least make it more tolerable.
It is really hard for other people to understand the severity of these symptoms if you are not in our bodies. When someone healthy reads that I have headaches 24 hours a day, 7 days a week, it is probably hard for them to fathom that. This is why socially we take ourselves out of public situations and retreat into our own little worlds. People don’t get it and many often get tired of trying to explain themselves. If you don’t look sick to most people, then you can’t be sick. That is the clincher with this illness. Most PWCs look healthy, yet indeed they are very ill.
I hope this week has shed some light on CFS for those of you who reading this site who are not familiar with the illness. For those of you with CFS reading this, I hope that you now see that you are not alone and you are not crazy. You are truly sick.
I too suffer horribly with the night sweats and chills which is a first time anyone ever mentioned this to me occuring with cfs or fibromy. I have thought of ending my life so many times it is not funny.
ricky is my name and i get night sweats /itchy skin,small spots ,loads of symptoms please call me on 07722338553 please i need to talk to someone
I am also getting night sweats and itchy skin these days; I’m fed up of waking up 3 times a night wet with sweat; I also have swollen feet. How’re you doing ?
Sandy Robinson says
Night sweats are common with CFS. After being ill for almost 20 years I still suffer almost daily from night sweats. Not fun.
I would like to know more about CFS. I stay cold after the sun goes down, and during the night I am either freezing or having a “hot flash” that sometimes makes me sick to my stomach, I have not been actually having sweats, but I get really hot, my skin is smoldering. I have also been having severe headaches, that feel like migraines. I also have the sore throat, and muscle aches and pains, and between my shoulder blades I feel like it is an inferno of twisted muscle. Every morning I wake up more tired than the day before, no matter how many of hours of sleep I get.
have had symptoms for almost 20 yrs about 12 yrs ago became worse and new symptoms. skin rash, severe itching yr round of face-neck-scalp-back-chest, diagnosed with asthma, fibromy, ibs, cfs. have been checking into drugs taken in first gulf war. by reading this it may just be natural occurance. mayo–cleveland clinics no answers had to see a rheumotologist at ohio st. I thought i was crazy and still didnt believe thats what it was. this articl and comments have convinced me. i feel like i have the flu constantly. plus a failed back surgery have thought of suicide many times. I realize it’s not my right to take my life though and there is a reason hopefully God will answer it at some point. Thanks for the info and i believe the finality. also reading the itching people are having (it is almost unberable) i have been told exzema, rosasia, etc. until i had a biopsy that proved them wrong but didnt give many answers.
check out gulf war syndrome, it can be caused by sand flea bites that cause a bacterial infection.
Doctors do not and will not treat lyme like infections and every single one of these symptoms sounds like (Lyme disease or bacterial co-infections) I am a firefighter that was misdiagnosed for MS, cardiac issues, peri menopause, PTSD…..turns out it is lyme (I actually got a positive test which is rare). Find a lyme literate doctor in your area. Cleanse the body, detoxify the heavy metal burdens, anti viral/anti bacterial/anti parasitic cleanse/ and malarial drugs are the cure for me. Seriously, I thought I was losing my mind…and body. Good luck!
Danease Gresch says
I sympathize with all of the folks with CFIDS and Fibro. I have it as well and have the night sweats, daytime sweating as well especially when I try to do housework (it’s rare I can do much). I take natural hormone creams for Menopause but I still have hot flashes and night sweats. I will wake up soaked and have to go change my bed clothes and then get really cold. Along with this I get nausea sometimes and stomach upsets. I have some pretty good days but mostly I wake up feeling terrible and exhausted. It may be 11am before I start to feel better. Doctors do not know how to treat these symptoms most of the time and it leaves us without hope.
shailee kerr says
Is it parkinsons?
Absolutely we are not alone.Yes the pain and the stress is sometimes severe.Yet it is a new illness and still not under the full attention of the medical world.My illness CFS started six years ago.No doctor in Greece were i stay could tell me what is going on.As an ex medical rep i started recording the symptoms and after searching the Internet i found out what actually is happening.A very careful cocktail of antidepressants -Wellbutrin- pain relievers-aspirin- and sleep helping Sinequan made this disease more tolerable.I am also here to join the group and say that you are not alone.
Well, this sounds kind of like me, too. I am dx with fibromyalgia. I was “doing too much”, the past few weeks– I mean, so much stress, that I never stopped; now, I don’t know if it’s a fibro- flare, or if I have a cold, or the flu? I really can’t tell the difference. So I don’t know when I am contagious! I just had horrible chills out of nowhere, and sore throat… no fever…ah, but then, sudden low- grade fever. Also, have migraines… how do I tell when I am really “sick” (contagious sick), or when it’s just my auto- immune system out of whack? I figure if my fever goes up to 101 or 102, it’s cold or flu (even though I had flu shot). Also, I take Melatonin (which makes me very cold). Oh, and also feel as though someone were wringing my muscles like a dishrag; yep, I understand that.
I take an occasional SAM-e, and that often helps… but can’t take it too often, as it upsets my stomach (sometimes). I take a low dose with vitamin drink containing folic acid, B vitamins, and protein. I think the stigma has to do with having so many symptoms, that people think we’re making it up or are hypochondriacs. I wish they could know what it’s like to be so tired, you just want to die. I am Single, and so, need to “ask for help” from people I know. Sometimes, it’s very humiliating. People ask me if I take vitamins, or say if I got up earlier, or took a walk, I’d do better. How do they know? : (
BTW, does anyone here have a sleep disorder with all this? I mean, going to bed late, getting up super late? (DPSD?) Wondering if there’s a connection? How about migraines and IBS? This is a really old thread, so I realize I may not receive response. However, it was nice to write to myself about it! Thx.
I am so glad to have come upon this discussion. I have CFS, Fibromyalgia, and other conditions, all resulting from a botched spine surgery. Until reading these testimonies, I though I was losing my mind and had diagnosed myself with probably having cancer, heart problems, and other life-threatening illnesses. Life has become miserable, almost unbearable. This illness affects every part of your body, making it difficult to eat, sleep, walk, sit, etc… But it strengthens your Prayer Life.
Diane Hart says
I have had all of the symptoms that everyone is posting about above, for 14 years. I had many tests over the years and have seen all the specialists. I am diagnosed with hypothyroidism, fibromyalgia and CFS. All tests for all the rheumatic and autoimmune diseases are always negative.
I finally got so tired of living in pain and exhaustion that I confronted my doctor and begged him to increase my thyroid medication, even though my labs showed that my TSH was near zero. I was on 77 µg of Synthroid and 20 µg of slow release T3. I was able to get him to increase the Synthroid to 88 µg and put me on a regular release T3 (Cytomel) instead of the slow release. Nothing happened for six weeks and I was so disappointed. Then at the six week mark I suddenly felt like a new person! We realized it was because the slow release T3 was still in my system and was blocking the conversion of my T4 to T3 (my T4 was always showing on the high side in my lab work).
Once my T4 started converting and the Cytomel kicked in, I suddenly had 50 percent more energy, I started to sleep through the night, the flares of body pain went away (especially after exercise), my rosacea cleared up, I no longer had dry eyes, my hair quit falling out, etc., etc.! It was like a miracle! The only pain left was the numbness in my feet, the tendinopathy in my hands/calves and some lower back pain from degenerative disc disease. It was truly amazing!
Unfortunately, six months after starting the increased thyroid doses I developed tachycardia. The heart is very sensitive to thyroid medication and can be damaged by too high of a dose. So my dose was refuced and I am now taking 77 µg of Synthroid and 10 to 15 µg of Cytomel. I still feel much better and particularly have much less pain overall. My insomnia has returned as well as the dry skin and rosacea and I have some pain at night. But I continue to have more energy, much less pain and I feel much much better!
I AM CONVINCED CFS and FIBROMYALGIA CAN BE TREATED WITH THYROID MEDICATION! I truly believe these conditions are actually caused by undertreated or undiagnosed hypothyroidism.
There is lots of research to show that hypothyroidism causes fatigue, unregulated body temperature, insomnia, myopathy, tendinopathies and many other metabolic symptoms that mirror CFS and fibromyalgia. The medical system of using lab work to diagnose instead of going by clinical symptoms has led to thousands and thousands of people living in pain and not being able to work due to disability.
The prescribing of thyroid medication of course has to be monitored as side effects can be serious. In my case, I have to walk a fine line between feeling well and getting cardiac symptoms. It is so worth it to have part of my life back! I am also fortunate to have found an Endocrinologist who will work with me. My advice is to be persistent with your healthcare professionals, as difficult as that is.
PS – I also encourage you to get off all medication including pain killers and antidepressants and supplements (except Vit D). All of these additives only burden the body and have side effects . Eat as nutritionally as you can. Use massage and heat treatment for pain including heated blankets, heating pads, hot tub’s or hot baths and hot packs or hot water bottles.
Retired Registered Nurse
Please check out Lyme and co-infections. Borrelia (Lyme), Bartonella (cat scratch), babesia (malarial like infection) these all cause flu like symptoms, sore lymph nodes, swollen feet, racing heart, fainting, drenching night sweats, severe nerve pain, spasms, blurry vision, sensitive hearing/smells, CFS and fibro, the list goes on and on….. yes, even suicidal thoughts.
Find a Lyme literate doctor immediately!!
I came here for advice on reducing the sweats. I sleep alone, naked no heating n every nite this winter i have woken drenched. Yet i goto bed freezing n thus take 4ever to sleep cos so cold…
Anyway i DO have some headache/brainfog advice
For me its a sign i been thinking too much or doing too much mental based stuff
Deep meditation undisturbed gets rid of my headaches.
I cld use cocodamol that makes me so relaxed n dopey it becomes more tolerable. But gives me worse symptoms over next few days
Im meditating 20mins or more each day no fail n headaches have gone. So i tried adding online games n i can enjoy them again within limits. N more i play, more i meditate. With 3x20min meditation daily, i can handle most days playing world of warcraft AND discord with group of 4 others. Its at the edge of what i can cope with , n i have to stay alert n not let the game give me adrenaline/excitement beyond what i can handle
I eat an AIP diet which i have found has also improved all symptoms except these aweful nite sweats n i avoid chemicals etc too
I think with cfs/me ya gotta approach it from all angles n all possibilities. Sort out any gut bacteria probs/leaky gut, allow true phys n mental relaxation, diet, no stress etc etc