two more weird symptoms

[Tammie]

Two things that have been really getting to me lately (and I know that compared to the many other issues I have, these should not seem that bad, but they are really bothering me) are:

dandruff (never had it before, have tried 14 different things to get rid of it and it just keeps getting worse....and many of the things I have tried have made my MCS really, really bad)(& I am getting very self conscious due to several CFS symptoms, esp cognitive ones, weight gain, shaking, and hair loss, and this is just adding to that whole thing)

major problems with fine motor coordination and shaking, to the point where I can no longer write anything by hand (even if I print) and have it be even remotely legible most days....sometimes I can manage to write a few words before it gets really bad, but even then writing checks and cards take me several sessions - am starting to worry that my checks will get cashed for the wrong amt - they are that bad

 

[talkingfox]

I've been having handwriting issues for the last few months too, Tami.

I've found it sort of comes and goes in waves for me and I've had a few instances when I couldn't make my hand do the motions at all. That was weird.

 

[Andrew]

I'm having trouble with handwriting too. I have someone write my checks for me and I sign them. My signature is a mess, but it looks enough like my signature.

I also had to stop addressing envelops by hand. I use my printer, or someone does it for me.

 

[shiso]

I think fine motor coordination (to differing extents for different people) is a pretty common symptom. Someone expressed it eloquently in a thread long time ago as "loss of complexity."

I know my handwriting has definitely taken a hit. Pre-CFS I used to be able to write in solid, clear handwriting for 30+ pages on a legal pad taking notes at all day meetings or interviews, and now my handwriting degenerates to shaky writing after about 3/4 of a page. Thank god for typing!!

Similar to that, I am clumsier with simple actions like getting money out of my wallet at the store or putting my wallet away into my purse. I've noticed a "loss of complexity" in movements like these that I never gave a second thought to before. I used to do yoga and ballet and had great posture and fluid movement; I now walk slowly and (in my own view) badly and have taken a couple of spills lately, I think both to a decline in overall coordination and absentmindedness.

Unfortunately but not surprisingly, I haven't received any helpful tips from any doctors about this...

 

[Tammie]

Thanks for the responses.....it helps a little to know I'm not alone, but it sure would be nice to actually find a way to deal with or improve these things....and Drs either don't have answers or don't even seem to understand why these are more than just a minor annoyance

Athene.....I do appreciate you suggestions.....interesting to note that I might need really high amounts of those, since I have been taking everything you mentioned except the inositol. I do definitely have some stomach issues going on, so that could explain some of this.....the only problem is that bc of the stomach issues, I am already having a really hard time keeping many of the supps down (esp the B vitamins....and I recently had to stop taking fish oil bc it got to the point where I threw up every time I took it.....I know you didn't mention that one, but I do think it was helping quite a bit with several issues, including skin & brain function- & so possibly stopping it is another reason for the increase in problems).....so anyway, I don't know if I can handle increasing the supplements

 

[kat0465]

i don't know why, but when im in a bad flare or it's about to get bad. My handwriting becomes Horrible! i can't even print. so even wheni try to keep a journal to get all my depression & frustrations out
Half the time i can't read what i wrote

Guess it's got to do with the neurological aspect of the DD, i do have lesions on the brain, that can't help much.anyone else have the Brain lesions??
Kat

 

[gracenote]

thank god for typing

Quote from shiso: I know my handwriting has definitely taken a hit. Pre-CFS I used to be able to write in solid, clear handwriting for 30+ pages on a legal pad taking notes at all day meetings or interviews, and now my handwriting degenerates to shaky writing after about 3/4 of a page. Thank god for typing!!

Yeah, me too.

I can't use ball point pens because they flow too fast and my writing becomes illegible. I use fine point felt tip pens (my favorite are from Pigma - Micron 01 - different colors). This helps me slow down. I also always print except when signing my name. But if I try to write more than a few sentences, I kind of lose it. That's one of the reasons I'm so glad to have a computer and a printer.

 

[lostinthedesert]

I had a lot of coordination problems and lost the ability to type without paying total attention and going slowly. If I tried to type at any speed all I had is gobble-de-gook and I did not notice my mistakes while I was making them. There were other things too but that was a good indication of the trouble that I was having. I also had muscle spasms and random jerking.

It appears that much of the trouble I was experiencing was due to neurotoxicity because these particular symptoms were greatly improved (but not totally eliminated) over a period of about three months using only two treatments.

First I was put on Cholestyramine. I started with a low dosage and quickly went up to one scoop four times a day, the final dose suggested by my doctor. Within about 48 hours of starting, my symptoms (those mentioned and many others) started to intensify. I went through a very tough detox for about a month, spending most of my time on the floor. I would guess that days 3 through 17 were probably the worst and then things tapered off. By the end of the month my neuro-muscular symptoms were a lot better and further treatment with CSM continued to bring slow improvement.

I was lucky to be able to tolerate the detox. I know that many folks have dangerous reactions if they try to detox very much. I had some reaction to the CSM itself or something that it was mixed with but it was minor and manageable compared to my other reactions. I slowly tapered down but almost three years later I still take it once a day.

After I had been on CSM for 2-3 months, tests revealed that I was carrying a toxin producing resistant staph colonization. Targeted multi-antibiotic treatment was able to eliminate this problem. About 3 weeks into this treatment I noticed an increase in energy. I had barely had the strength to toilet and take food but after this I could do more even though I was still severely limited. The metallic taste in my mouth also started to improve with this treatment. I took the abx for a month then waited a while before repeating the culture to make sure that I was clear.

Don't know if this will be useful to anyone as we all are different. I still have coordination and equilibrium problems but there is no doubt that these treatments helped me a lot. At the time I did them I was doing no other medical treatments and the only supplements I was taking were vitamins C and E and maybe a bit of occasional valerian tea for my back spasms.

YMMV - consult your own medical professionals etc

Peace,
S

 

[kaazoom]

I have had ME/CFS since December 2005. I started to notice problems with my handwriting in late 2008. I thought I might have Parkinson's Disease, because my gait often looks parkinson's-like and I sometimes have problems with initiating movement. But it appears these types of symptoms can be caused by ME/CFS.

Paul

 

[Mithriel]

I can't remember who it was, but one of the old ME doctors said he got patients to handwrite their symptoms in the waiting room. People with ME would start fine but as they got down the page their writing deteriorated to illegible scrawl.

Writing takes a lot of muscle control. It is where the first signs of problems will show up. When I was young I wanted to get into hand writing examination. They were talking about using it to diagnose diseases by looking for early muscle problems. I think that sort of thing has been dropped - it wasn't personality stuff, just looking at how letters were formed.

Mithriel

 

[Victoria]

Some years ago, I had what was diagnosed as RSI in my right elbow/wrist which lasted approx 9 months in total. It started in mid Oct & by the end of November I could not write or type well at all. I had to take 5 weeks off work (luckily I had plenty of accrued annual leave owing to me) & eventually could not sign my name. Cutting carrots or hard vegetables was extrememely difficult, so I swapped to frozen veg for a while.

Lifting my arm to brush my teeth, put my contact lenses in, wash my face or put on mascara & eye makeup (for work) was difficult. My muscles just didn't do what I told them to. Sometimes my hands starting shaking when I would force my arm higher.

Today, I suspect it was actually a CFS/FM issue.

The first lot of acupuncture didn't work. Cortisone injections didn't work. Eventually a different acupuncturist healed the problem in just 3 sessions the following July.

A couple of years later, I was steadily losing the feeling in my hands to grasp or pick up things. I dropped a whole tray of cups/saucers, new teapot etc. and well as other things, hence you get a mug when you visit my place (not a cup & saucer).

I found success in fingers exercises & squeeze ball exercises. I couldn't squeeze the medium or hard "squeeze balls" - I could only use the softest one.

I did the exercises with both hands (even though it was mainly the right hand) evenly a couple of time a day. Fifteen repetitions morning & fifteen repetitions in the evening.

I would squeeze the ball gently (harder as I got my feeling in my hand) & then roll the ball around with my finger tips (thereby using different muscles in my hands/fingers).

I would squeeze, roll or turn the ball over with my fingers, squeeze gently, roll or turn the ball over with my fingers, squeeze gently & so on. After about 3 weeks, the feeling & strength were completely normal. So my own exercise worked better than the physio, doctor, injections & acupuncture on that occasion.

A year (or was it 2?) ago, same thing started to happen. I ended up doing some knitting (would you believe). It took me forever to do one row of knitting (only about 30 stitches), but after a few weeks, I could knit for 20-30 minutes without pain/or numbness.

 

[Julia Rachel]

Hi Tammie:

I have CFIDS (HHV-6A,EBV,CMV & Micoplasma) and I have 6 other auto immune diseases as well. One of these is Psoriasis and Psoriatic Arthritis. I've been told it is natural to have auto immune (as well as endocrine immune) issues with the CFS/CFIDS/ME/Fibro Illnesses. I am treated with Topicort Creme, which works REALLY WELL for me on the scalp. It is the only thing which keeps my scalp under control. I lost about 50% of my hair two different times over the past 6 years. It is just now thickening again as I progress with the anti-viral and antibiotic treatments. Psoriasis is nasty, it stings, it bleeds and it can get out of control. If you have it, it normally can be controlled. I also take (Inject) Enbrel for the arthritis and this keeps the Psoriasis in check as well. My son Blake has CFIDS as well. He has the HHV-6A and The EBV.....he has trouble with shaking and writing legibly. Part of this was corrected with a change in diet (email me if you are interested) which helped stabilize his blood sugar and part of this is getting about 65% better with his Treatment (Valcyte) and his vitamins. He shakes much more than me and he does shake when on "overload" with anxiety at times as well. You are not alone...Blessings.Julia...PS....when I lost my hair the first time.....there was a TON of dandruff! It was if my scalp was "peeling" and it was not my psoriasis.....I read aboput it...something about the cells shedding? System Overload stress.....

 

[rosie26]

I'm having trouble with handwriting too. I have someone write my checks for me and I sign them. My signature is a mess, but it looks enough like my signature.

Yes the handwriting. About 4-5 years before my severe collapse with ME, I began to struggle to write my full signature. I could not keep the flow to the end of my surname. I still today write a short version of my original signature. I can't hold it out to the end and so I finish it early and miss out some letters in my surname. I was frustrated by it for some years as I really liked the way I wrote my full version signature and I just couldn't do it anymore.

 

[taniaaust1]

I can nowdays write a few small paragraphs by hand on a good day (thou it hurts me some as my hands and wrists will quickly start to ache, its a lot of effort) but back when I was worst, I too was at the point where I couldnt even sign my name at times due to the temoring and spasms. It was aweful.

I type on my computer most things and avoid hand writing where possible.
.........

Im wondering if coconut oil massaged once a week into your scalp would help the dandruff and then left for half an hour. Then washed off by 1 tablespoon of bicarb soda (baking powder) mixed with enough water to make a runny paste or pour throu your hair (or mix with half cup of water and pour on your hair a bit at a time rubbing it in. Leave it there for 1min and wash off and I think that would probably remove the coconut oil.

Vinegar as a conditioner.. 1 Tblespoon mixed with a little water and leave on for 1min then rinse out with water. Helps to settle down the hair and smooth it out as the bicarb soda can be a bit harsh.

 

[Valentijn]

My signature is a scrawl now. When I signed my Social Security card when I was 14 (within a year of Lyme exposure), I had a normal signature. By 18, it was already a mess and I couldn't read my own class notes. It would be very hard and slow for me to do a normal signature.