Iam losing use of my hands and arms..

Discussion in 'Fibromyalgia Main Forum' started by doxygirl, Oct 31, 2008.

  1. doxygirl

    doxygirl New Member

    it all started a few years ago when I would be sleeping...the pain and frozen feeling was so bad it would wake me up...I kept telling my dr and basically he just wrote me a rx for neuron tin....

    I refused to put a "band aid" on a problem that needed to be addressed not covered up...

    it has now been about 2 years since it first started....and because my dr refuses to order tests ..it has progressed to the point where iam unable to do many things!

    I cannot complete applying my makeup, I cannot drive for very long..and many many other things because my hands get numb up to my elbow!

    I have been so very patient waiting for my husbands ins to change from a hmo to a ppo, so I can get the tests done that I need!.... and this is going to happen now in just 2 months.....but Iam now afraid it may be too late?

    The dr told me back when first started having this problem that worse case scenario I could lose use of my hands and arms...which I am afraid is happening?

    Can anyone tell me if you have this same problem?

    Iam so close to getting this taken care of and I so hope it is not too late......

    I also cannot remember the exact name of this but think my dr said peripheral neuropathy????

    I really would appreciate it if any of you are knowledgeable with this problem you will post to me....Iam scared and upset...

  2. jole

    jole Member

    Have you been checked for carpal tunnel? I know it can have the same symptoms as you describe....and is not that serious.

    Also, do you have neck issues? Could it be a pinched nerve that could be released? My daughter was having problems with lost strength in her arm, and it turned out to be that her neck was out of wack. The chiro adjusted her and now her arm is fine.

    Just a few more suggestions. These may be much less frightening than peripheral neuropathy....which I thought was more a leg issue....but I've been wrong before.

    Hugs, and hope you find the answer soon. This has got to be frightening for you. ***Jole***
  3. SpecialK82

    SpecialK82 New Member

    Hey Doxy,

    I have the same sort of feelings, they are in my arms/hands and legs. I have had it for years when this whole DD started. Are you going to have an EMG? That is an actual nerve test to check for damage.

    I have had this for years, I had one EMG at the onset and I had one recently and they both show no damage. It's bizzare how this doesn't show up. It seems to be like alot of our symptoms, medical science cannot come up with a test that we fail.

    So don't get too stressed. Actually if it turns out to be carpel tunnel I think that would be a great thing - something that they could diagnose and fix! Right?

    Good luck,
  4. Bunchy

    Bunchy New Member

    I have this in my legs.

    I went out for dinner with DH the other day and within twenty minutes my legs were numb. I had awful pain and continued numbness after coming home. For me it comes from sitting on a hard chair. I used to have it in my arms but now it is my legs.

    DH thinks I am exaggerating :( I agree it is some form of neuropathy but I don't know how to fix the problem and neither does my doc.

    I feel for you. Sorry I can't help but I can relate.


    Bunchy xxx
  5. buttercakes

    buttercakes New Member

    Yes, I have this problem, my Neurologist did an EMG that showed I have sensory peripheral
    neuropathy in both arms and hands. Do you have neck problems?? My EMG also revealed I had Radiculopathy at C-6 & C-7 with active denerveation(the nerve root is dieing) I take neurontin
    for pain,but it does not change my condition. Have you asked your Doc. to order an EMG?
    You would think that would be the least he could do! Is he a Neorologist? I know how you feel, it is very painful and scary. Sandie
  6. doxygirl

    doxygirl New Member

    My current dr is just a internist...but I am getting a ppo so now I will be able to go wherever I want to !

    I do not think I could withstand the pain from an EMG so Iam going to go the direction of an MRI and hope I get answers!

    I was tested for carpel tunnel and told I did not have it!

    I really appreciate all of your replies and I will keep you all informed of where I go and what I find out....I just hope that when I do it is not too late!

  7. buttercakes

    buttercakes New Member

    Doxy, I have had three EMGs, really, their a piece of cake. The needle is so fine that you cant really feel it. I started with an MRI that showed nothing was wrong, it was not until my EMG that I finally got positive results. It showed my GP that I was not making up the pain. What ever you choose good luck, Sandie
  8. cordy250

    cordy250 Member

    if anyone has mentioned thoracic outlet syndrome?
  9. dragon06

    dragon06 New Member

    It sounds like peripheral neuropathy. My MIL has it. Unfortunately the treatment for PN is either Neurontin or Lyrica basically. It got so bad with my MIL that she had to have a hand surgery about 2 years ago. If your doctor is recommending Nuerontin then I would take it as that is the general treatment for Peripheral Neuropathy. There isn't a cure for it.
  10. sick~kitty

    sick~kitty New Member

    Before you laugh, a lack of B-12 can sometimes cause neuropathy. It can especially be a problem for vegetarians, whose diet has almost no B-12. My brother was a vegetarian for a few years, and now has to take B-12 supplements even though his present diet has what would be an adequate amount of B-12 for most people.
  11. CanBrit

    CanBrit Member

    I started getting peripheral neuropathy a few years ago. It's a pretty awful feeling. I have it in my legs and my arms. Lately, I've been dropping things, having trouble typing and the pain in my arms and legs wakes me up at night.

    I think the biggest thing that's scaring me, though, is the dropping things. It's like my dexterity is going. I did have an injury to my right shoulder ealier in the year as well as a concussion but I'm also dropping things with my left hand too.

    I'll let you know if they come up with something for me other than the neuropathy diagnosis.

    All the best
  12. tansy

    tansy New Member

    Hi Doxy

    I have been Dx with both ME and neuroborreliosis, peripheral neuropathies are not uncommon in these illnesses, they are frequently reported by FMers too.

    Though my cognitive issues can get me down it's the upper limb neuropathies that really frustrate me; they make coping with all the basic activities for our daily survival extremely difficult. Mine have been present since '83 so I understand how you are feeling right now.

    Knowing what is specifically contributing to them may help. I second the suggestion you get your cervical spine checked out since nerve impingement can cause your Sx. Cubital and carpal tunnel neuropathies can also weaken specific areas in the upper limbs; often these conditions respond well to conservative TX and learning what not to do.

    Poor microcirculation and oxygen utilisation can affect nerve function; the former is well documented in diabetes. Several PTs have asked me if I've tried hyperbaric oxygen since they have seen marked improvements in some of their patients especially where there's significant sensory involvement.

    Hypercoagulation can also cause neuropathies; Dr Graham Hughes often quotes the misDxes of MS because treating Hughes Syndrome can bring about vast improvements where this has been the cause of nerve damage/function. Toxins and various infections can also affect nerve function.

    My Sx become worse when my inflammation flares up so I continue to take supps etc that help to modulate both my immune system and inflammation. My limbs are often cold, especially my arms, even in summer; my GP was amazed when he checked them after shaking my cold hand on a relatively mild day.

    I learned not to push my levels of localised activity too far since this would exacerbate the problems; keeping to a level of activity that helped me maintain movement and some strength worked better than trying to push my way through it. My lower limb neuropathies are still present but have improved; this was following treating general Sx and finally being able to use a pilates machine with care. Now when I am at my strongest, and the neuropathies are not so severe, I can walk up a flight of stairs - the last time I could do that was 1986.

    Until I get my new computer up and running I will only be popping in ocassionally but I will look for this topic when I next log on because if I had known what I know now I would not be dealing with the consequences of treatable issues affecting the function of peripheral nerves.

    Good luck Doxy; I sincerely hope you find the solutions to this problem soon.

    tc, Tansy
    [This Message was Edited on 11/03/2008]
  13. Bunchy

    Bunchy New Member

    Tansy - great to see you posting again - I hope your computer problems get sorted soon :)

    Doxy, I would go with the EMG that others have suggested. I'm also going to bring this problem up with my doctor when I see her on Thursday.

    Take care.

    Love Bunchy x
  14. tansy

    tansy New Member

    Hi Bunchy

    You need a consultant's referral for an EMG; as you know GPs are often very limited in the tests they can request for their patients. If you have already seen a neurologist you could insist upon having a second opinion but you might want to see if there's a ME and FM friendly neurologist first.

    It's worth trying for this though because an EMG can pick up problems with nerve transmission; my EMGs also picked up abnormalities in my muscle function and spinal lesions. My last EMG was purely to measure the function of one specific peripheral nerve but the neurologist who carried out my test observed other nerve deficits.

    Do you remember the findings of the autopsies following Sophia Mirza's death? They found inflammation in her dorsal root ganglion. For many years I had pain throughout my spine and additional electrical shooting pains. This is known as neuropathic pain which is characterised by shooting and burning pain, tingling and numbness. There's a description of neuropathic pain at


    and treatment suggestions at


    Typically it took over 25 years before any doctor attempted to treat my neuropathic pain specifically but this time it is purely for my post surgical neuropathic pain and was started 8 months too late. The delay had nothing to do with my Dx of ME; just the usual lack of accurate information and communication between various NHS health professionals.

    I hate being without easy access to the internet and need a computer for composing letters etc so I am looking forward to having a working computer again.
    tc, Tansy
    [This Message was Edited on 11/03/2008]
  15. winsomme

    winsomme New Member

    I have weakness in arms and legs...the question is where it is originating from...could be central nervous system or peripheral....could be many things, but you might want to try and get some of the testing that has been suggested just to see how you do.

    an EMG should tell you how your peripheral nervous system is performing. I believe the Evoked Potentials tells you about the central pathways...

    i also had skin biopsy from a neurologist in CT that specializes in Lyme. If you want his name you can get it from LymeNet....I can direct you if you are interested because a lot of these DRs don't their names circulated around too too much..

    anyway, i saw him and had the skin biopsy done and it showed some nerve damage (ie peripheral neuropathy). he has been having success treating with IVIG, but it is tricky to get insurance to cover it. they are pretty good at getting it through if the testing comes up positive.

    personally i think the weakness could also be hormonal, metabolic, mitochondrial in nature, but checking how the nerves are functioning might at least give you some info..