What Is Wrong W/Me? Scared It's FM or Worse.

Discussion in 'Fibromyalgia Main Forum' started by dammit, Oct 24, 2006.

  1. dammit

    dammit New Member

    I don't know what's wrong with me. Every day, I grow increasingly anxious and afraid that one day, I will be the embodiment of the age-old joke of "waking up dead."

    Some background: I was involved in a motor vehicle accident in 1998. I was the driver and was hit from behind by five cars, like a stack of dominoes. When thrust forward, I, too, hit the one vehicle in front of me. I almost immediately began experiencing neck and shoulder pain, and had limited range of motion in turning to my left (which was eventually rated as a 5 % disability in my neck). I went through physical therapy, pain meds, chiropractic care, MRIs and CAT scans, only to be told that there was essentially nothing I could do but wait it out.

    It took six years before the pain ceased being an ever-present, everyday occurrence.

    I began managing by getting massages every once in a while, taking baths and sometimes taking pain meds during a flareup of the neck/shoulders/upper back.

    I had learned to live with that.

    In 2006, I gave birth to my first (and only, currently) child via C-section. It was not until after this event that I began noticing a marked change in my health.

    I began experiencing what seemed like panic attacks - feeling like an outsider watching my own life with such a sense of disreality and heart palpitations that I surely thought I was about to die. I went to the ER the first time it happened, and they could find nothing wrong with me.

    I then began having headaches which my dr. thinks are migraines but to me seem to have no normal pattern. I have noticed electric-like sensations at various points in my head, sometimes independent of and other times precipitating a headache.

    I had a CAT scan, which revealed only a blocked sinus.

    The sensations in my head continued and eventually I began feeling them in different parts of my body - knees, elbows, legs, feet ... These sensations are not particularly painful but incredibly disturbing. The best way to describe them is "electric."

    I have noticed a couple of other things, like muscle twitches on occasion and, recently, a spot on my toe that hurt superficially though it had not been irritated or injured in any way.

    I once saw an acupuncturist who told me the last thing I want to be diagnosed with is fibromyalgia. He said I would become uninsurable for life insurance and the diagnosis would appear on my record for insurance queries and the like.

    What is wrong with me?! My doctor said it's not MS or lupus and still thinks I just have migraines.

    In the meantime, I've been doing some FM-related research and have started taking organic apple cider vinegar and added magnesium and MSM/glucosamine to my daily supplement regimine.

    All input appreciated.

    * Let me add that my life in general is extremely stressful, if this makes any difference.
  2. abcanada

    abcanada New Member

    Read my bio. I have many of the same symptoms. I'm having an MRI next Monday which I'm very excited, as I've been waiting 6 months. my CT Scan was normal, and so were other arthritis/other tests. I feel like I'll get some answers. Either something will show and I'll deal with that or they're going to call it FM. I have a busy home, so it keeps my mind off the worry, but oh yah I've been quite worried about why a 32 year old woman feels like this. I've had brutal migraines too. The only way I could deal with the fear at times was to let myself know there's not much I can do about it, just face the music! Laura
  3. suz45

    suz45 New Member

    You sound very upset and frustrated, not that I blame you. Have you though about getting a referral to a Rheumy or pain specialist to determine what is wrong...

    I'm assuming you have seen a neuro by your post. What if it is FM, not the worse thing in the world, I really believe it is better to know than not know.

    Additionally, there is more care available and I have found that more doctors are becoming educated about FM that it is not just a wastebasket Dx, but very real.

    part of it is advocating for yourself, make a list for your doctors, make sure all the other disorders have been ruled out ie; Lyme, thyroid, hormonal etc... Than you can deal better,

    Starting on the supplements will probably be helpful, you may want to consider a High potency B vitamin and calcium with vitamin D. Start slow. Let us know how you make out. We all support each other here.

    Suz45
  4. dammit

    dammit New Member

    I am very interested in learning what your MRI shows.

    So far, I have only been going to my general practitioner. He has not felt the need to refer me to anyone else, but at this point, when I go in for my next physical (soon to be scheduled), I want to demand a full-body MRI!

    This can't be normal. Something has to be wrong.

    *BTW, a correction, I gave birth in 2004, not 2006. My daughter is almost 2 and a half.
  5. dammit

    dammit New Member

    Thanks for your reply.

    I'm not upset so much as I am afraid. I am only 28, married with a young child and many things I'd like to accomplish in life, and not being in control of this is disturbing and makes me fear for my future.

    I've always been (and try to remain) active. I exercise, don't eat red meat, don't drink soft drinks, don't use artificial sweeteners, seldom eat fried foods ... so if something is acutely wrong with me, I suppose I feel cheated, as if my efforts to remain healthy have been for naught.

    I will be scheduling my annual physical soon. Before I go, I will make a list, and hopefully one that has enough symptoms to convince my doctor that it might not just be migraines!

    I do take calcium (1200) with vitamin D, as well as flaxseed oil supplements, B-12, a multi-vitamin, vitamin C and a liver cleanse supplement.
  6. suz45

    suz45 New Member

    Hi again, can't say I blame you for being upset, especially at age 28 with a two year older to care for. I have lived with a chronic disroder since my teens(seizures), the FM/MPS came later at about age 40, but I had symptoms for a long time before that.

    Not knowing is both scary and frustrating...Would it be possible to bring a support person along that can also relay info. I have found this very helpful when tryng to deal with the disorders I have. One time I brought my sister to my doctor (cool doctor) so she could describe my seizures that I had at night as I couldn't help (no memory of the event), she was able to describe in detail really bizzare stuff I did, but it helped me get the right care.

    I have also brought my husband for support, as he knows how I am usually, at this point I am pretty good at getting my point across and advocating for myself. I do my research first, keep and bring any records or journals and to be frank...I ask questions.

    As a therapist, I expect questions to be asked of me... when I am counseling..this is only natural and alleviates anxiety...

    My current family doctor is really good at listening, I last saw him in early September, he recognized the my myofascial pain trigger points were in aflare he knows I don't want to take any more meds than neccessary, so he put me on short term muscle relaxants and made a referral to a chiropractor who has been really good at working out the trigger points in my back/hip/left shoulder.

    Keep trying... Sounds like you are on the right path. There is light down the tunnel... I remember when I felt like you do know.

    Hugs,

    Suz45
  7. darude

    darude New Member

    Oh mi there are sooooo many videos on YOU TUBE!!!!!!!! The biggest thing is people being misdiagnosed. A lot of people DX with MS,Lupus, CFS, FMS and AD have found out they have Lyme and other disorders. There are some very positive videos on there such as people who have been confined to wheelchairs and now are walking after treating for tick borne illness. The one that i posted of the woman with severe CFS/ME is how I was in the beginning but I have improved from that over the three years. Thing is tho that the word is really getting out now and thats what we need. Luv Annie the Londoner
  8. wendye

    wendye Member

    I am sorry this is happening to you. Please let me know if you do get the full mri body scan. I am in the same boat as you are. I really feel that there is something wrong with me and it is not being found. i would like every part of my body checked also, so if nothing shows then I can be reassured that their is nothing seriously wrong with me.


    best of luck to you and I hope you get an answer for the cause of your symptoms.

    Wendy
  9. daylilyfan

    daylilyfan New Member

    Have you noticed any changes to the skin on your arms or hands?
    Is it colder/hotter ??
    Is it shiny?
    Does it swell?
    Is it any more sensitive to touch or wind or cold?
    Do you have any more or less hair on your arms, more or less sweating?

    Your description of electric shock like pains reminds me of Reflex Sympathetic Dystrophy. If you had it settle into the injury you had in your neck, it should show in one or both of your hands or arms first... but could very well also show in your legs, or feet... and could account for your spot on your toe. The symptoms I listed above are some of the most common, although THE most common is a horrible, burning pain, starting where your original injury was.

    For more information, you can look up Reflex Sympathetic Dystrophy - Clinical Guidelines. That should take you to places with the best information. RSD presents itself in many ways, and few doctors know enough to recognize it. They may go their entire career and never diagnose it. They may have people that have it in their practice, but not know it. Pain Management doctors are usually the ones who diagnose it, or neurologists. It used to be called Reflex Sympathetic Dystrophy, but is now called Complex Regional Pain Syndrome.

    I hope you find some answers!!
  10. TKE

    TKE New Member

    You can have those electic shocks, muscle twitching, mirgrains, etc & not have it show up on a MRI. The cause can be pressure on a nerve in your neck or back some place that's so mild it doesn't show on the tests. I am dealing with it right now. Had lower back problems for years. 2004 got dx'd with DDD with herniation & nerve compression. Got better, but not 100%. Back went out 4 times since & in August it went major. Recent MRI shows it's better....NOT! I have the electric shocks, muscle twitching, loss of toe movement, numb feet, leg weakness. EMG (nerve study) shows I have the problem, but the MRI did not.

    My neck had been hurting all along, but not major. Now it is, with lighting bolt shocks of pain. My MRI shows 2 buldged discs, 1 herniated, Degenerative arthritis & nerve compression. I also have muscle twitching in arms & my hands tingle off & on. So my doc is sending me back to the Neurosergon.

    It sounds like you need to do 2 things 1. Do everything you can to lower the stress in your life even if it means making major lifestyle changes. 2. See a different doc. Perhaps a neurosergon & a Rehumy would be able to give you a proper dx.
  11. daytrippersoul

    daytrippersoul New Member

    I want to add that ever since I was diagnosed with FMS/CFS back in early 2001 that my symptoms have been ever changing sometimes going into remission and sometimes weird unexplainable conditions. Probably had every test done under this beautiful planet and all is normal all the time. I look healthy everyone says all the time!!! But rarely feel that way. I'm sure you can all relate!
    Gotta go my time is up on this computer!

    Here's to your health! :eek:)

    Love..jackie
  12. mommyinpain

    mommyinpain New Member

    I also have that electric feeling in my head. I don't know what it is. I've never told the Dr. about it, mainly because I know he will say it is stress. I think it is a nerve irritated because I also get that get of electric twitching feeling in my back and I usually need to go to the Chiro which helps. Chiro says it is a pinched or irritated nerve that causes that feeling in my back so I just assume it is the same in the top of my head but don't know for sure.

    Mine feels like a kind of twitching in the top of my had. It's like a trobbing twitch, if that makes any sense. What I mean is it feels like a heartbeat, if throbs. It is not there all the time but when it is it will last for days.

    I also have the muscle twitching. I told my Rheumy about that and he said it wasn't any wonder since I'm under so much stress and he also said I took too many vitamins and that I needed to quit all the vitamins except for a Calcium w/D that he prescribed.

    I went off all my vitamins on his advise for 3 months and I still had the twitching. Go figure.

    I wish I could be more help. Hope you can get some answers. Let us know what you find out. I'd be interested to know what that feeling is in my head.

    Good luck, MIP