The Time of Year When CFS & FM Symptoms Flare

It’s that dreaded time of year again for us ME/CFS & Fibromyalgia patients.  The fall weather, changes in temperature, and the shortening days tend to make symptoms flare full force.  For about the last week I have been experiencing a very noticeable difference in my body and the season changes are really affecting me.  I have been massively flaring and I am thankful that I cut my hours back at work to just one day a week.

My pain level really increases this time of year.  I will notice my legs, back, and hips aching a lot more than what they normally do.  I also am feeling extremely sluggish and while I normally have insomnia, now all my body wants to do is sleep.  I could barely keep my eyes open last night while eating dinner and on the trip to the restaurant.  These symptoms are always to the extreme and it is very frustrating. 

What symptoms of yours flares more this time of year?  Do you notice a marked difference in your CFS and/or Fibromyalgia when fall arrives?  Let me know in the comments!

Results of CFIDS Association ME/CFS Symptoms Survey

I previously took a survey by the CFIDS Association regarding ME/CFS symptoms and which ones were worse.  The CFIDS Association has revealed the results of that survey and I thought readers might find it interesting.  Here is a little bit more about the survey by Suzanne Vernon, Scientific Director of the CFIDS Association:

In May we asked CFIDSLink readers, donors and members to respond to a detailed 15-item questionnaire to examine family history and patterns of symptoms and factors at onset of illness and that may worsen symptoms over time. In August we reported a preliminary analysis; this month we have more closely analyzed the symptom patterns you reported. Of the 1,200 survey responses, 1,100 were completed accurately for the analysis. The respondents were broken down into four age groups and the age at the date of the survey was calculated, as well as duration of illness.

To view all of the age groups, please use this link to view the table by Suzanne Vernon.  Here are some of the other results.

• The largest group of survey respondents (almost 45%) were in the 41 – 55 age group. 
• Each age group had more women than men.
• The avg. age of CFS onset was older for the older age groups, each group still included those who reported onset at an early age. 
• The avg. # of years of those sick in each age group was more than 5 years.
• The most common symptoms for ALL age groups are post-exertion fatigue, unrefreshing sleep, muscle pain, & concentration problems.
• The next set of most common symptoms for ALL age groups are headache, joint pain, sinus problems, eye sensitivity to light, depression, other sleep issues.
• Some of the symptoms that are less common also seem to vary more by age group (Ex:  pelvic pain was more common in the younger age groups where urinary urgency was more common in older age groups). 
• The less common symptoms were reported as more severe in older age groups.  According to Dr. Vernon, “This may be an indication of conditions that evolve and co-occur with CFS as individuals age and remain ill.”
• The severity of unrefreshing sleep decreased slightly in older age groups. 

To view all of the symptoms included in the survey and to view Dr. Vernon’s graphs on this survey, please use the link below:

Symptom Survey Responses Indicate Cardinal Symptoms of CFS

ME/CFS – Weird Symptoms We Experience That Are Not Widely Focused On

The Eyes:

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.

Ringing Ears:

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. 

Severe Itching/Rashes:

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.

Speaking difficulties:

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.

Hot Flashes:

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.

Nausea:

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.

Light sensitivity:

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.

Panic attacks:

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!

ME/CFS: Analyzing Every Step You Take

 

Do you remember the days before ME/CFS where you just got up, went about your daily routine and didn’t think, rethink, and overthink every step you take and every move you make?  (Great – now I have the Police song “Every Step You Take” going through my head!)  People unlike us, the healthy ones, or who I refer to as “normals”, go through life just going and doing whatever their hearts desire and never realize how lucky they are to not have to worry about how their activity will affect them tomorrow.  Or the day after that.  Or the week after that.

Because of ME/CFS symptoms, particularly the cognitive dysfunction and post-exertional malaise, I personally feel as though I have to take into consideration every little detail of daily activities in order to try and get through life.  Does that make sense?  For example, I have to determine daily if it would be less exhausting for me to take my shower in the morning or at night.  If I have to work plus run errands afterwards, I have to usually break up my errands into a couple of days because to do it all at once is too exhausting.  If I want to have a weekend away with my family, which we usually plan well in advance, I try to schedule all housecleaning and errand running so that I have very little to do the week of our getaway.  I still have to work but with the exception of laundry and cooking meals, I do little else at home so that I have energy to go away.  If I’m not going anywhere & if I don’t have to work, I usually won’t bother to put on any makeup and I have my hair cut every four weeks so that it only takes me five minutes to style. 

Over the years I have went from the woman who wanted it all to the woman who contemplates and tries to figure out every possible way to make life easier and less exhausting.  I went from loving to have decorations all over my house and practically every wall space covered to minimalizing it all so that I have way less to dust.  Every action & every decision I make revolves around how it will affect my ME/CFS & how many days a particular activity may keep me on the couch lifeless.

Now that my son is an active first grader (almost 2nd grader – hard to believe!), I have school activities and his sports activities I have to constantly analyze as well.  We only allow him to participate in one sports activity at a time because I know that there is no way I would be able to handle all of the running around to practices and games that is involved.  He just finished soccer and my husband had to take him to a few of his practices for me and I missed two of his games because I was too exhausted. 

Wouldn’t it be great to go back to the days where you didn’t have to think about all of this stuff?  How many of you are the same way and analyze every step you take?  Please comment!

Does Your ME/CFS Feel Like ADD At Times?

There are days when my lack of concentration is so bad that I wonder if I have Attention Deficit Disorder (ADD).  The older I get, the worse I seem to get at times.  I am a very organized person for the most part, but when I am having concentration issues, I will jump from one thing to another.  I am like that with my thoughts as well.  If my body can’t jump from one thing to the next, my mind will work overtime.

Author Edward M. Hallowell, MD describes what ADD feels like.  See if this sounds like you with ME/CFS at times:

It’s like driving in the rain with bad windshield wipers. Everything is smudged and blurred and you’re speeding along, and it’s reeeeally frustrating not being able to see very well. Or, it’s like listening to a radio station with a lot of static and you have to strain to hear what’s going on. Or, it’s like trying to build a house of cards in a dust storm. You have to build a structure to protect yourself from the wind before you can even start on the cards.

In other ways it’s like being super-charged all the time. You get one idea and you have to act on it, and then, what do you know, but you’ve got another idea before you’ve finished up with the first one, and so you go for that one, but of course a third idea intercepts the second, and you just have to follow that one, and pretty soon people are calling you disorganized and impulsive and all sorts of impolite words that miss the point completely. Because you’re trying really hard. It’s just that you have all these invisible vectors pulling you this way and that which makes it really hard to stay on task.

“It’s like being super-charged all the time”.  Isn’t this how a lot of us end up sick?  We are on overdrive and doing the work of two or three people. 

“It’s like driving in the rain with bad windshield wipers. Everything is smudged and blurred and you’re speeding along, and it’s reeeeally frustrating not being able to see very well. “  The cognitive dysfunction, when it is bad, is very bad and nothing makes sense, you can’t figure out a simple math equation like 2 +2, and remembering your own phone number or address is a difficult task.

“You get one idea and you have to act on it, and then, what do you know, but you’ve got another idea before you’ve finished up with the first one, and so you go for that one, but of course a third idea intercepts the second.”  I will find that on a rare day when I have a lot of energy I will be like this.   I feel so good and my mind is working so well, I get excited and go from one thing to the next – trying to get it all done before the good feeling goes away.

I also find that when someone is talking to me, I can only listen and pay attention for so long.  I don’t do this on purpose because I really do want to listen fully to what someone is talking to me about.  My lack of concentration, however, does not allow me to listen well to someone for more than five minutes.  This can be a problem at times in my marriage because my husband is a talker – a BIG talker – and he is very detailed when he talks.  Before he has finished telling me about his day, I have done tuned out and he has lost me.  I try, but I just can’t focus.  I have always blamed this on my ME/CFS as well because before I became ill I never had this problem. 

I try to explain that I have limited concentration because after a few minutes my mind goes to something else and that when talking to me, keep it short, to the point and simple.  Anyone else experience any of this?  Do you find you have these issues with your ME/CFS?  Leave a comment and share with us!

If you would like to purchase Dr. Hallowell’s book on ADD, click the link below!

Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder

Rashes With ME/CFS

One of the symptoms listed for ME/CFS is rashes, but it is a symptom that we don’t hear much about and it was one that I didn’t think too much about until recently.  I have chatted on discussion boards with ME/CFS patients the past couple of days trying to find out more about the rashes and I’m surprised at how many people didn’t realize it was even a symptom. 

Occasionally over the years I would find myself developing little red splots, sort of like really tiny red freckles, on my skin from time to time but lately I have been having very noticable rash problems.  I have Rosacea on my face, which is like having a chronic rash, but these rashes are different than anything I have ever experienced before.

About a month ago, I discovered a very painful and itchy rash on the back side of my left knee.  At first, I thought it was another bad varicose vein because I had a similar feeling in my right leg when that large lump appeared but that was due to phlebitis.  The rash on my the back of my left leg was very red, large and it was very dry.  It hurt and burnt like crazy but after about a week or two it cleared up. 

Three days ago, I had this familiar burning on the underside of my upper left arm – the part that I always say is still waving after my hand is finished.  It feels and looks exactly like what I had on my leg – a brush burn type rash.  It started in one spot and now I have three spots of this mysterious rash. 

Either the rash is ME/CFS related or my body is trying to fight something else off (besides all of the chronic illnesses it already has to work on).  Now that I’m working I’m around germs all of the time and sick people coming through my line.  I am constantly using sanitizer wipes because of all of the germs but that doesn’t help completely.  I’m not using any new medications, laundry detergent or anything like that so nothing new as far as what I use has changed.  The rash doesn’t look like psoriasis, eczema or shingles. 

I was hoping that some of you readers could share if you have rashes due to your ME/CFS, what they look like, where you get them, and what your doctor has said about them. 

ME/CFS Hot Spells & Flashes

With my ME/CFS flare this week I have been having those old familiar hot flashes or hot spells that I have been known to get over the years since becoming ill.  These are different than the hot flashes I get around my period.  I still wonder sometimes though if it isn’t a combination of both perimenopause and ME/CFS.  My cycle ended over the weekend and I have been having these hot spells all week so I really believe this time it is due to the ME/CFS flare.

I wish I could find something that would help this very annoying symptom.  It gets me awake at night, keeps me awake during the day when my body is desperately begging for sleep and is just overall miserable. 

The hot flashes in ME/CFS is due to poor functioning of the autonomic nervous system. This includes controlling of the blood pressure, pulse and sweating.  This is all controlled by the hypothalamus.  One minute I will be shivering and covering up with all of the blankets I can find – the next I’m stripping down to as little as possible because I’m so hot. 

I’ve tried Evening Primrose Oil & Black Cohosh but it is not helping with the hot flashes from ME/CFS.  I was wondering if any of you have tried anything with success that you could share?

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