Does Anyone Know Anything About or Have "Nerve Damage"?

Discussion in 'Fibromyalgia Main Forum' started by catgal, Jan 29, 2003.

  1. catgal

    catgal New Member

    Hello Everyone~~Recently I was referred by my primary physician to a Pain Specialist for what was to be basically a "consultation" for my physician's records to validate the narcotic pain management meds I have been on for two years for degenerative disc disease {ddd} and other back problems. Just 'backup' documentation for my records.

    The Pain Specialist spent a good deal of time with me, examined me, tested my reflexes, and told me not only was my ddd more advanced, but I had nerve damage from my neck, down through my spine & legs to my feet. That this was serious, and he wanted to start running a series of tests.

    I told him I only worked part-time, did not have benefits, and no insurance. He sat down, looked very concerned, and told me that what I had was serious, was only going to get worse, that I needed testing to rule out various other disorders and get an accurate diagnosis of the nerve damage, that without a doubt I was looking at surgery, and this was all going to be very expensive, and I had better get some insurance ASAP. He asked that my back x-rays and MRI be sent to him.

    I have had FM/CFS for over 35 years along with asthma/allergies, IBS, osteo/psoriatic/rheumatoid arthritis.

    What is meant by "nerve damage", and what does this entail? I am at a loss and am not sure what to do at this point. What I thought was going to be a 15 minute consultation about my meds (20mgs oxycontin 3x's a day; 3 10mg percocets a day for breakthrough pain; soma at night or as needed for muscle spasms; .5mg klonopin for RLS and sleep, and 10mg bextra as an anti-inflamatory) turned out to be almost an hour session, thorough exam, and bad news.

    Can anyone shed some light on this for me as I feel completely in the dark. Any experience or information would be greatly appreciated. Carol....
    [This Message was Edited on 01/29/2003]
    [This Message was Edited on 01/29/2003]
  2. Combatmedic

    Combatmedic New Member

    I too have been told, by my neurologist, after having a barrage of tests run (EEG, ENG, SSER, and C-spine and brain MRI's) that I have nerve damage, consistant with the lesion in my brain. That's all he said, Oh, and that I have "mild arthritic changes in my neck". LOL, he's very nonchalant about everything---expcept fibromyalgia. He became VERY agressive to me speaking about fibromyalgia on my first visit---I, along with my mother were shocked. The good thing, though, is that he truly believes in fibromyalgia, the bad thing is, he told me that he does NOT believe they will ever figure it out, and that I will never get better. :-(
    I don't believe him, of course, I can't what would I get up for every morning if I thought the same way he did?

    Basically, nerve damage is just that.....your nerves are damaged. Which means that the signals are getting messed up to the brain, you feel pain much much more, because the nerves are the receptors, our "feelers" that communicate with the brain and when damaged, they can reallllly cause PAIN!(or, lack of pain, which can cause people to burn their fingers ect. cause they will not recieve the signal quick enough that tells them to "Jerk your hand away! This hurts!"

    Hopefully someone else will be of more assistance for you soon, that's about all I can say about it.

    Medic
  3. catgal

    catgal New Member

    I appreciate the time and effort you all put into helping me shed some light on this nerve damage ordeal.

    I do know that when the Pain Specialist hit my knees with the rubber hammer that I had no reflexes. He kept hitting & hitting my knees...but got no response. Then, he took my shoes off and told me to hold my feet out and try to resist as he pressed lightly down on them. To my amazement, it hurt, and my feet went right down, and he wasn't putting that much pressure on them.

    He hit me with the rubber hammer on several other areas of my body and asked me how long this had been going on. I just sat there stupid. I'm so used to my body not functioning properly that when things flare up, swell up, or don't work--I just figure it's due to one or a combination of the illnesses I have. I was as stunned as he was.

    He asked me if I thought my medication was sufficient enough to handle the pain, and I told him my doctor and I just upped the oxycontin from 10mgs 3x's a day to 20mgs 3x's a day in mid-December, and that I was doing much better than I had been. He just shook his head, and I told him that I didn't know what it was to live without pain--so if I get ANY improvement--I'm happy. He just looked at me like I was a starving child happy with a crumb. I didn't know what else to say.

    Thanks again for your help, and I would be glad to hear from anyone else. Best Wishes, Carol....
  4. Mikie

    Mikie Moderator

    I am so sorry about this diagnosis and the pain you have been through. I cannot help with your question on never damage, but thought I would mention insurance. Your doc makes it sound as though anyone can just go out and get insured and everything will be covered.

    Unless you can find a guaranteed-issue plan, you are uninsurable. A guaranteed-issue plan would be one through a spouse's employment, your employment, or a state-mandated plan. State-mandated plans have some special criteria one must meet and are not available to everyone. They are also very, very expensive.

    You are in my thoughts and prayers.

    Love, Mikie
  5. Lanie

    Lanie New Member

    although I cannot offer you help as far as nerve problems, maybe I can offer a suggestion regarding your insurance problem. In our state, there is an insurance for those who have none. It is offered thru the Department of Social Services. I know you have to meet a certain criteria, not sure what that is though. I had it myself for about a year when I was pregnant with my 1st child for my pregnancy as I was new at my FT job and hadn't received insurance yet. I hope this helps.

    Perhaps you can check this out in your own home state.
    Good luck to you,
    Lanie
  6. Plantscaper

    Plantscaper New Member

    Dear Carol, Because you also state that you have Rhuematoid Arthritis, you may want to look up Peripheral Neuopathies..This causes nerve damage and my mother developed this as a result of having extremely severe Rheumatoid Arthritis/Vasculitis...a neurologist/rheumatologist would be the diagnostician for this disease and my mother is on neurontin for the pain..this may/may not be your problem..but it is also an autoimmune disorder and I think my mother's illness is relevant to our's since mycoplasma plays a part in both and you have been diagnosed with RA as well.
  7. reb

    reb New Member

    Catgirl,

    Yes I have nerve damage in my foot. I didn't have it until I had a "simple" surgery though. The doctor that did the surgery damaged a nerve. Did I sue...no, it seems there was a line formed to do that. It only effects the movement of one toe, so I live with it. So far, it's been better than having it "corrected".

    Something just does not sound right to me in your posting. Just a feeling I get. If I were you, I would get a second opinion before taking any steps further. Yes, the "doctor" that did my nerve damage was a referral, not just picked out of the yellow pages.
  8. GradgirlJen

    GradgirlJen New Member

    I can't believe that you have no reflexes in your knees either. I have never met another person who has these problems! As of yet, I have no answers, other than I am in severe constant pain, have severe fatigue and no reflexes. I am waiting for my MRI appointment soon. WOW.