Weakness of arms, hands, both sides, reach & grasp hardship

Discussion in 'Symptoms' started by AmberHope, Oct 14, 2017.

  1. AmberHope

    AmberHope Active Member

    This is extreme weakness, much worse than any I had in previous decades of severe fibro and CFS.

    I have both PAIN, AND weakness, and trouble with reaching my arms in any direction, and using my wrists, hands, and fingers, of both hands.
    Over less than 6 months, I have become unable to dress myself without help, and even difficult with help. I cannot wash all the areas of my own body, I cannot do any handcrafts , I have pain and difficulty in grasping a handle or a fat pen, just to write a short sentence. Or reaching onto the table to pick up a piece of paper or a lightweight cup.

    ANYONE have any input or ideas about this? It is very limiting and worrisome, and seems to be progressive.
    It even hurts and is hard to move slightly, when motionless in bed. And hard to move my hand slightly, or the bed sheet. I cannot pick up anything that falls to the floor.

    All suggestions welcome, as well as understanding.
  2. Not dead yet!

    Not dead yet! Well-Known Member

    Ouch that sounds very painful! Wish I could be more helpful. The only thing I can think of is that it reminds me of carpal tunnel syndrome. My husband treats that with a homemade Vitamin D cream (just lotion with a couple of cut open capsules of vitamin D pills). Cortizone cream works too, but if you use that for a month and then suddenly stop, you might feel below the weather for a few days. Vitamin D cream is safer, imo.

    A chiropractor also worked with my shoulders to release some tension that was going down my arms. It really helped. But not everyone responds the same to chiro's. Shoulder impingement or bursitis might be worth a google search too. Ok that's really all I can think of atm. I do hope you find some relief.
    AmberHope likes this.
  3. AmberHope

    AmberHope Active Member

    @Not dead yet!

    Thank you very much for sharing your ideas and thoughts with me. I needed to get some input of additional possibilities, to consider, other than the ones I continued to swirl in my own head. Those are some good ideas you listed, for me to think over!
  4. Farmgirl

    Farmgirl Well-Known Member

    @AmberHope. Sorry that you have these increasing hardships. Hang in there! You are not alone! FG
  5. AmberHope

    AmberHope Active Member

    Thank you very much @Farmgirl
    I do appreciate it!
  6. Zapped

    Zapped Well-Known Member

    You know, these symptoms sound a lot like what I feel as my MECFS has progressed over the years. I empathize with you as these syndromes can be as debilitating as other more systemic pains of MECFS.

    It’s hard to know how practical or theoretical you want to be. I realize you want the pain to stop but you may really be looking into how it got there and what may be a long term solution. That means digging around (the forums) for relevant discussions.

    As you likely know, one real school of thought is the reemergence of a lesser form of Polio (an enterovirus). There are numerous articles on this which you can Google. The main treatment is relevant antiviral therapy, eg as lead by Dr. John Chia and others. Some of the names of rx’s are Famvir, Foscarnet, or even Valcyte. Again, there are threads here on HR and over at phoenixrising.me forums on these treatments.

    I believe going after the root cause is key to a longtime solution; but there’s also the temporary relief we want right now:&

    I hope you can otherwise get some temporary relief from standard systemic pain medicines (non narcotic) from your doc, such as Lyrica, Neurontin, or even low dose Naltrexone.

    Also, as an ongoing project you might want to consider the current hot topic relevant to antiviral treatment, especially if you’re looking for more cause and effect rather than rx’s as pain killers. It’s more in depth but goes after the root suspects for our malaise: https://worldmercuryproject.org/news/retroviruses-poorly-understood-agents-of-change/
    Last edited: Oct 20, 2017
    Farmgirl likes this.
  7. AmberHope

    AmberHope Active Member

    Thank you so very much, for those ideas, @Zapped
    I appreciate it very much, and will read again, (probably several times) and consider them. Thank you for the empathy, in addition, which I do need, together with all the other aspects you mentioned. I am open to all input and ideas about this increasing difficulty and worsening level of disability.
  8. Zapped

    Zapped Well-Known Member

    @AmberHope I hope you find some relief and that the above info helps.
    AmberHope likes this.
  9. Farmgirl

    Farmgirl Well-Known Member

    @Amber Hope
    Hi.. I can't help you a lot, but wondering if you might benefit from a neck MRI? I didn't know it for a long time,but I have severe spinal stenosis and a bone spur us pointing right into my spinal cord. They cannot operate, so I am loosing the function in my left arm. My neck hurts all the time. (The doctor said my MRI looked like that of an 80 year old)

    LDN has been a miracle for me in that area.

    Also, if you were fine before all this, maybe pinpoint what changed and that may help you and your physician find a puzzle piece in this health mystery. Sometimes, we with ME/CFS feel like we have to our own doctors, but we need help from the medical community, too!

    I recently had a horrible rash and two doctors insisted it was bacterial. Put it this way....I had no need of a Halloween costume!! . I went on antibiotics and it is mostly gone. They described it as an ongoing internal infection. Lyme disease...most likely, but waiting for test results.

    Again, know that you are not alone. Keep us posted! . FG
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  10. Zapped

    Zapped Well-Known Member

    @Farmgirl. ...I recently had a horrible rash and two doctors insisted it was bacterial. Put it this way....I had no need of a Halloween costume!! . I went on antibiotics and it is mostly gone. They described it as an ongoing internal infection. Lyme disease...most likely, but waiting for test results.

    I was thinking about @AmberHope’s malaise possibly being in the Rheumatoid Arthritis tree when I saw your rash points. This could be part of Herpes Varicella, aka Shingles, from genetic predisposition?

    We’ve had both of these conditions, above and below manifest in one branch of our family. They can lie dormant for years.

    Relatedly, the pain described by @AmberHope may also fall under Rheumatology camp, e.g. a spondyloarthropathy osteoarthritis or even ankylosing spondylitis (AS)the latter usually manifesting in joints and axial skeleton. I would think a competent doctor would pick up these symptoms and readily offer treatment, usually related to above referenced rx’s.

    Best wishes for an accurate diagnosis.

    BTW A couple of supplements you could try on your own: larger doses of Lipoic Acid (A or R) and/or Pantothenic Acid, all easily found, eg Amazon.com
    Last edited: Oct 23, 2017
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  11. Farmgirl

    Farmgirl Well-Known Member

    @Zapped it is so nice that you care. I hope Amber finds help.
    Just got a bunch if blood tests back and my immune system is pretty messed up. I don't even know if this is normal for ME/CFS. Neutropenia,low WBC in the presence of infection. That is a good point about the dormant infections.

    Zapped, I am so worn today (have myocarditis from the viruses, too..EBV,CMV,HhV-6, Coxackie ). I want to thank you for your note! Have a nice day. FG
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  12. Zapped

    Zapped Well-Known Member

    Geez, you did get your share of viral components, all seen in MECFS... .

    Maybe there’s a silver lining: you got yours well defined, which means you can get several options to fight each one. Hopefully, your doc is versed on the antivirals. You may need to try several over a long period of time; or you may get a few rx’s at one time and get some relatively quicker relief... .

    Hang in there;)
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  13. Zapped

    Zapped Well-Known Member

    @FG. FWIW, afterword - the viruses you quoted are all related, eg HHV 6, then CMV is HHV5, then EBV, all in the herpes viridae family.

    Myocarditis is known to be caused by coxackie virus, with symptoms of fatigue et al adding to your CFSME symptoms. It reads like a text book ID.

    You’ve identified what many of us are searching for, specific causes.
    No doubt you’ll feel better after getting underway on the antivirals.

    I hope you’ll post a list of your rx’s, even if you only get one or two
    at a time, and how you’re feeling while taking each.

    Caio, again!