Neurological aspects of Fibromyalgia??

Discussion in 'Fibromyalgia Main Forum' started by Meg1710, Jan 30, 2009.

  1. Meg1710

    Meg1710 New Member

    It's a few months since I visited this board and I have a question!

    Since August 3rd 2007 I have been unwell with a lot of symptoms. Initially my symptoms were burning/buzzing/icy sensations (paraesthesias) in lower legs which have progressed to upper legs, buttocks, thighs, face, eyebrows, arms etc and this was initially diagnosed as Peripheral Neuropathy - possibly a SFN (small fibre neuropathy). Also stocking-glove sensations.

    Extreme general fatigue quickly followed the onset of paraesthesias, then muscle fatigue, weakness and stiffness. Heavy eyelids and a weak voice also. Then flitting pains in joints which could be extremely painful and could prevent me from walking on a limb for a couple of days. When these pains disappeared there was no sign that they had ever been. Also I have had quite a bit of nausea and stomach discomfort.

    Over the past six months joint pain and stiffness, have sometimes made it hard to get out of the car, get up from a chair and sometimes very slow walking. Fingers and hands started to get stiff in the mornings about July 2008. Some finger joints have started to change shape.

    I got a terrible cough in April 2008 which lasted until November. While in hospital in September I was diagnosed with Bronchiectasis of both lungs. Later in September I started to get worsening stomach issues like early satiety, fullness, nausea and some vomiting. Last week I was diagnosed with Gastroparesis (paralyzed stomach due to a damaged Vagus nerve) and am now on an all liquid/pureed diet. Gastroparesis is an autonomic form of Peripheral Neuropathy, so it is a compatible kind of diagnosis with PN!

    Also in 2008 I had raised Mycoplasma Pn. titres.

    Yesterday I went to see a Rheumatologist and tried to communicate all the symptoms I have had to give her as much information as possible on which to base an opinion. I was a bit hesitant about going to her as I have found that it is not until I get doctors at the Associate Professor or Professor level that I get any real satisfaction. Although she explained things quite well I don't know if she really got the complexity of it all. In the end as she tried to hurry me out the door she grabbed a Fibromyalgia sheet from her drawer and said "I didn't really want to raise this" and said FMS is a neurological condition. She said there is no need to reschedule another appointment and she charged me for an extended visit!

    I'm not totally convinced about her Fibromyalgia conclusions! I know there was a time last year in desperation before I started to get any answers to the cough and the stomach problems when I thought that ME/Fibromyalgia was a possible answer, but now I am not so sure!!!

    So one question I have is: is there a greater proportion of people with Fibromyalgia, who along with limb tingling/burning as a symptom ... end up getting Gastroparesis or extreme muscle twitching (Fasciculations) like 30,000 per day or any of the other autonomic or motor associated symptoms of neuropathy? These are definitely Neurological problems and if Fibromyalgia is increasingly being considered a neurological condition then are these aspects also widely prevalent among Fibromyalgia people?

    Any feedback, opinions or input would be most appreciated!
  2. CanBrit

    CanBrit Member

    Your post came at an interesting time for me.

    First, let me tell you that I was diagnosed with FM in 2004 and am now 52. I also have Peripheral Neuropathy which has increased in the past year, since an accident that I had in Feb 08. (I had a concussion and torn tendon in my shoulder). I also have severe fatigue that comes and goes, more than it used to. Roving stabbing pains and muscle pains that cause difficulty in using my arms and/or legs. I have acid reflux disease which has increased as well. I experience nausea and stomach discomfort which has caused me to lose 28 lbs in the last year. I have a nodule on my thumb, just below my nail, which has become very painful with movement and/or touch.

    As a result of all of this, I have been off work since July 08. My diagnosis was made by a rheumatologist following the usual standard criteria (16 out of 18 tender points), fatigue, IBS, pain, insomnia and all other tests that were performed were negative. This rheumatologist then informed me that he doesn't treat people with FM, so now I am being monitored by my family physician.

    Since the pain has increased so much this year, my Dr. referred me to a pain specialist. He took one look at me and asked my if I had any neuropathic pain. I said yes, in my arms and legs and he said "You don't have FM"! He didn't take any history from me at all. He sent me for MRI's of my spine and cervical area.

    I received the results yesterday which he said shows moderate degenerative disc disease both in my neck and spine down to the lumbar region. He said that there is also muscle inflammation running down my spine as well as bone spurs and bulging, which he said explains why I'm getting all this pain through the arms, legs, and also the neuropathy. He said that the degeneration in my cervical area looks more like someone who's been in a car accident. Well, I haven't.

    I don't know who to believe. I'm going to ask my Dr. to refer me to someone who handles DDD and get a second opinion. I have all the markers for FM, but you can also have FM and a multitude of other disorders. There's a danger in Dr's saying everything's due to FM. Now this pain specialist is saying everything's due to DDD.

    I imagine this is not too much comfort for you as I have no answers other than to say, don't stop trying to get the answers. I think we know our own bodies better than anyone else and if you feel like something else is not quite right, you have to keep digging to find the truth. I believe there's something else going on with me... RA maybe? (explains the nodule, weightloss, etc)

    Let me know how things go....

  3. Janalynn

    Janalynn New Member

    Some people have 'classic" Fibro symptoms and are easier to diagnose - I'm one of them. I can tell you that Gastro issues and the muscle twitching IS very common in Fibro, but that doesn't mean it isn't something else you're dealing with. Actual joint pain isn't really Fibro - well it feels like joint pain, but it's really everything surrounding the joints.
    As far as muscle twitching - VERY common. But I also know that there can be other causes as well. It sounds like you need more answers to be satisfied. I wouldn't just take a Dr. who "writes you off" as having Fibro. If you do have it, you want one who says "this is what I believe you have."
    Good Luck - dont' stop digging.
  4. Meg1710

    Meg1710 New Member

    Thankyou Eileen and Janalynn for your responses. I hope you can get some satisfaction Eileen with your current issues. Yes we do know our bodies best and when things are going awry!

    This Rheumatologist didn't do any tender point testing at all. She didn't even really say that is what I had - just gave me the Fibro info sheet at the end of the consult. She inferred I may have some Osteoarthritis but probably not Rheumatoid arthritis.

    I told her the symptoms I do have but it seems that there are a lot of typical Fibro symptoms that I do not have, such as, I never get a headache unless I am badly dehydrated, I'm not depressed and anxious, I'm not insomniac- to name only three!

    I'm under four other "ologists" apart from the Rhematologist I saw yesterday, so have decided to see a General Physician to co-ordinate all my conditions and laise between doctors. I have a friend who recommended him to me as this is what he does for him and he is very tenacious and won't let anything go - he pursues every lead! So I hope he can help me too in this complex mire!
  5. holiday16

    holiday16 New Member

    but I had many neuro. issues most of which turned out to be related to gluten in my case. However, some things that were left I brought up to my internist. Bottom line is until he tested to make sure it wasn't something else he would not say it was related to FM. Muscle weakness was the main issue in my case.

    I can relate to some of the neuro things you describe, but like I said in my case they're triggered by gluten. It also sets off my FM so for me there is some relation. I know that's not true for everyone. It causes me to have twitching (not so severe, but it probably would have progressed), essential tremors, swelling, loss of coordination, slurred speech, essential tremors, extreme fatigue, trigeminal neuralgia, skipped heartbeats and much more.

    I had to search for years before I found that gluten caused all that for me. I think it's dangerous to automatically assume everything is caused by FM. I'd be in terrible shape if I had gone that route...

  6. monica33flowers

    monica33flowers New Member

    Two years ago I started seeing a neurosurgeon. They "thought" they found the culprit at C4-5 narrowing of the nerve. The surgeon did a cervical fusion. It has not helped with my pain. I have bulging discs from C2-C3 (C4-5 prior) C6, T1-2. I also have degenerative disc disease and they have found several bone spurs as well.

    In May it will be one year since the surgery and it hasn't helped at all.

    I did go to a Pain Clinic and they burned the nerves that were sending the pain signals. I ended up in excruciating pain and no relief. I now have a rather large "dead spot" in my neck on the left side. They wanted to do the right side as well but their was no way I was going thru that again and not having any relief.

    My neurosurgeon does not believe in fibro. When I asked him about it his response was this, "Fibromyalgia is a trash can diagnosis when we can't find anything else." Nice, huh?

    They probably will want you to have a epidural nerve block in order to see if you have either pinched the nerve of the opening for the nerve is narrowed. They did mine 3 times and only once did it work. If I would have known what I knew then I would have never had the surgery.

    I don't want to scare you. Maybe, you have a great dr. but just be careful and make sure the choices are choices you believe that will benefit you.

    Best of luck and keep us posted.
  7. LuvQuilting

    LuvQuilting New Member

    Sorry to hear about your problems. They sound pretty similar to mine. It's like putting a huge puzzle together.

    Here is my list so far:
    PN (sensory) I think autonomic, too
    Ruptured disk, and two bulging
    Carpal Tunnel in both wrists
    Voice disorder (inflammation in throat/ jaw area)
    Tendonitis in hands/fingers (found with MRI)
    Early satiety, nausea, poor digestion, constipation
    Elevated Igm levels (caused by inflammation?)
    Elevated ANA

    I have so much going on but just don't know what's causing what. There had to be an order as to how these things happened. My neurologist doesn't really believe in FM either. Not sure I do either. I'm wondering if my back problems came first and then caused all the PN stuff. I have two appointments this week so I'll have lots of questions again.

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