Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, March 30, 2017

Hand and finger pain / numbness in ME/CFS?

I've said this before, but every time I think I have experienced every possible symptom that ME/CFS can throw at me, a new one arises that I would have never expected.

Starting on Monday of this week, I descended into a crash.  Most of the symptoms of this crash have been typical for me.  It is clearly a body-wide inflammation event of some kind.  First, my energy takes a dive -- that's a given.  Then, I experience upper respiratory inflammation.  This comes in the form of three symptoms which, for me, almost always go together: shortness of breath, post-nasal drip, and an itchiness in my nose which sometimes results in sneezing.  (This whole triad seems suspiciously allergic in nature, but allergy tests have never shown anything significant.)  Some crashes stop there for me.  It's not the worst kind of crash if it "only" involves a dip in energy and the upper respiratory symptoms.

But when a crash gets worse, I usually also get dizziness upon standing and peripheral neuropathy (my hands become uncoordinated and slightly numb.)  Usually when the crash hits this stage, I also experience tachycardia and a feeling of pressure in the skull (like brain swelling).  I have that now as well.

But this time, in addition to the numbness in the hands, it has actually progressed to pain in the hands, especially in the finger tips.  It hurts to type this post.  It hurts to do almost anything that I typically do with my hands:  Open a bottle, button a shirt, wash my hands.

Starting about a year ago, I noticed that whenever I washed my hands, the act of rubbing my hands together produced an uncomfortable sensation; almost pain, but not quite.  It was a minor discomfort but one of those things that registers with a "hmm, that's odd," before forgetting about it.

Now, with this current crash, my finger tips have become painful to the touch, and the palms have become extremely sensitive.  Now when I rub the palms together while washing, it actually hurts.  It's much more than discomfort now.

I searched the Internet and found very little about finger pain in ME/CFS.  There were a few other people noting the symptom on various message board threads (e.g. 1, 2), but nothing about what causes it or what can be done to treat it.  This is frustrating.

Please, if anyone knows what can be done about this, or where I can learn more about the cause or management of this symptom, please leave a comment below.  If/when I learn more about it, I'll write an updated post.

7 comments:

  1. Maybe you should look into MCAS. It's sort of come up in the past 3 years, as a side to Lyme, CFS, whatever is going on. I was diagnosed with it, was honestly dubious (so many diagnoses over the years, can't possibly all be true). I did take one med for it, didn't noice huge difference, was a fortune. When initially tested, was okay enough to make to appt, get tests, etc—by definition, that's a very good day for me. And those tests showed no problems. However, full out collapsed (I'm sicker than you, pretty sure—though not competing). Managed to get ER doc to pull couple tests. My histamine was really incredibly high. I had mild allergic symptoms—I mean, comparatively not so bad. But I collapsed. So it does seem to be real (there are other tests besides histamine in a panel, btw). It's hard to fully diagnose—I don't know why EVERYTHING involved with this is like that. Also, I almost didn't write this b/c it's a whole other world of a million options, tx complications, 'you get worse before you get better' and not a hell of a lot of specialists who deal with it. But if it hasn't been on your radar, you could look into it. Again, like everything else here, the symptom lists for it often include nearly any possible 'symptom' you could possibly have ever. But I now think its likely causing a lot of my problems and I'm just beginning to contend with it. I think it can/does cause a lot.

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    1. Thanks! Your comment came at a good time. I happen to be reading Dr. Afrin's book on MCAS right now. My doctor has suggested that we could consider testing for MCAS, so we might turn to that next. It will be interesting...

      I appreciate you sharing your experience with MCAS. I am more inclined to approach it with caution now.

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  2. I'm not very up-to-date with this, but don't some patients get peripheral neuropathy? My concern would be diabetic neuropathy as it can be more dangerous over time. Here's a link to some info. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

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    1. Some patients definitely get peripheral neuropathy. I'm not sure about the diabetic kind -- I have been tested for that and it was negative. I will check out your link. Thank you!

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  3. I definitely get lots of numbness in my right hand especially. I know that I have different blood pressures on each arm (which I was told is not good)..so figured the numbness is due to some blood flow/pressure irregularities. It seemed like the doctors didn't have much to explain about it so I stopped asking about it.

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    1. That must be so frustrating. I hate it when doctors don't have an explanation for something and you're forced to stop asking about it.

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  4. hi,
    i get numbness in a crash, more noticeable at night, hands particularly. I think it part of the cell defense mechansim by CFS that causes it. I also get air hunger like you also.
    I restarted fibroprotek by algonot (its better for CFS than the other products)
    greg.

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