help of anykind from anyone

Discussion in 'Fibromyalgia Main Forum' started by zetanpriest, Mar 28, 2003.

  1. zetanpriest

    zetanpriest New Member

    hi everyone,im new to these boards. i have been looking through this site and a few things seem familiar,i hope i dont go on to much but will try to explain how i feel as best as i can.....i am a 33 year old carpenter,i have suffered from a bad neck for years (just stiff neck and soreness) about 5 weeks ago my nan died and it seem since then my problems have started. just after she died my sore neck flaired up,but with it i had pins and needles ,numbness in my hands and feet and a funny feeling up the left side of my face( a twitch or tingle or tightness are the only way to describe this) .also i had dizzyness and a foggy glands in my neck have been hurting on and off, my arms and legs ache terribly as if i have the worst flu you can imagine. i went to see a chiropractor who x-rayed my neck and decided it was twisted badly....he cracked my neck and spine over 5 visits,in the past weeks. i didnt improve so went to see a Dr ,he said it wasnt to do with my neck and refered me to a neaurologist(who i am waiting to see now and maybe wont be for another 6 months) as i am now i am so worried about my symtoms and how im feeling, i have a wife and 9 month old little boy to support so cant afford to not work.....but some mornings(not all)i really have to drag myself out of bed. i know i have only felt like this for 5 weeks but it seems like a lifetime. the pins and needles in my feet and hands come and go now ,but i still get this funny feeling in my face. i only have to carry my boy for a while and my arms ache or walk up the stairs to make my legs feel weak.
    thankyou for reading this and im sorry if i went on a bit but thats how im feeling at the moment. i hope someone has some words of advise for me .....thank you
  2. Mikie

    Mikie Moderator

    First, welcome to our board. Second, I am so sorry about your loss. The stress from losing a loved one care really set us back. Try to get as much rest as you can.

    Diagnosing our illnesses is usually a frustrating process of eliminating other illnesses which mimic ours. Most of our test come back normal, although we can have other illnesses along with FMS/CFIDS.

    Love, Mikie
  3. lostnfound

    lostnfound New Member

    Hi ZP

    Wow! You sound so very much like all the people I know with rheumatic disorders (now more properly? referred to as auto-immune disorders). 3 years ago I finally received the diagnosis of fibromyalgia, but I know I have been dealing with this syndrome for my entire life. Doctors were puzzled, intrigued, but basically unable to help until recent years. Just over 6 weeks ago I got tired of never seeming to have any answers that helped me deal with the pain, the feelings of anger and sadness, and the feeling that I was no longer living my was living me! I typed the "searchword" fibromyalgia into my search engine and doors opened beyond my belief!!! There is so much information available out there! Sources include the National Arthritis Foundation; Devin Starlanyl, MD and fibromyte; sites like this one, etc.

    Learning about what doctors and fellow sufferers have to say about this darned disease has led me to many discoveries including confirmation of how I was first "delivered" from its devastating effects in my youth and how I managed to have mostly remissions during my prime years.

    My latest "flare" began around the same time my now-deceased husband was diagnosed with multiple myeloma (a form of cancer very similar to leukemia). I mostly ignored my symptoms as much as possible and managed to provide care for hubby right up until his death. But, after the memorial service, I fell apart. The pain was the worst I could remember, I could not sleep, I seemed to spiral ever downward. Fortunately, I had a doctor and a psychologist who were well aware that I was suffering depression from the combination of the effects of the fibromyalgia and the loss of my husband. The grieving process has been horrendous.......for the first time since childhood I had nobody with whom I could discuss my concerns......until I came to ProHealth and its systems of information and sharing with others!

    You seem to be suffering much the same thing I have just been doctors have confirmed that the depression and grieving process have directly affected my level of pain as well as my ability to cope with the often disabling aspects of my particular combination of disorders.

    My advice.........research your condition as much as possible! Then keep a symptom journal and record how your pain is with different activities...include things like what seems to make you feel better, what seems to make the pain worse......these will help your doctor get to the root of your condition. Also, when you have time, you may want to join the good people I have met in the chatrooms particular group is in the fibrochat.....oddly enough we all have many other conditions that seem to fit into this "category" of auto-immune "diseases".

    My prayers go with you.......hope you can find your own answers and will receive the support and encouragement from your doctor and the people in your life that make such a difference to anyone suffering any condition, particularly of the type that produces so much pain!


    Fran (aka lostnfound)
  4. Dayle

    Dayle New Member

    just wanted to let you know that you will get lots of info & support here. Prayers for you & your little family.
  5. Dara

    Dara New Member

    has been a godsend for me. What I would do without it, I have no idea. I was wondering, why do you have to wait for so long to see a neurologist? Your symptoms could be all from the FMS but I would think it would be very important to rule out anything else first. Welcome to this board, you will find a lot of help and support here. I am sorry for your loss, it's so traumatic to lose a loved one.

  6. layinglow

    layinglow New Member

    Welcome to the board. My onset of fibro was very much like the symptoms you have described. I had severe pain radiating from my neck, across my shoulder, and down my arm. By the time it reached my hand it was an electrical feeling. I also had numb feet. It progressed to tingling and twitches in the face.
    I, too was schedule to see a neurologist. I was diagnosed by him with stenosis, and arthritis in my cervical spine.
    However, the my symptoms kept broadening and spreading, and I began having more pain elsewhere--and all the other symptoms typical of fibro, I too, felt like I had horrid case of the flu, every day. I consulted with a fibro specialists and was given the diagnosis of fibromyalgia and chronic fatigue syndrome.
    I have since made progress---
    Best wishes to you in your quest for health! And Welcome to the board.
  7. Tibbiecow

    Tibbiecow New Member

    Maybe you could find a good rheumatologist who believes in fibromyalgia and that we actually experience pain and should be medicated appropriately for the pain and sleep problems associated with fibromyalgia. Unfortunately finding such a doc isn't easy, but there is a doc referral service on this site as well as other post-people here who will refer you if they live anywhere within a few hours drive and have a good doc, that can see you sometime this century.
    So sorry for your loss and good luck finding some help.
    I'm seeing a neurologist for my migraines and he's really completely clueless about the fibro, he won't medicate me for it at all, he referred me immediately to a rheumatologist, (who's the best rheumy on the planet)so that's part of why I'm suggesting seeing a "rheumy" now rather than later.
  8. zetanpriest

    zetanpriest New Member

    thankyou everyone,for taking the time to reply to is very comforting to read all your opinions.
    the worse thing for me at the moment is not knowing what is going on what i have or havent got. someone asked about the length of time to see a neaurologist,there is a massive waiting list here in the uk,where the nation health service is in big trouble. if i could afford it i could pay to see a private neaurologist,but my money situation wont let me do that. i will keep reading these boards,and keep you all updated......thanks
  9. starstella

    starstella New Member

    could be related to trigger points in your neck, jaw, and shoulder areas. you have been under a lot of stress which causes tension in those areas. you also do work that places stress on your shoulders and possibly your back. you could also have trigger points in your hip and lower back areas which are causing the leg symptoms

    while you are waiting to see the neurologist, perhaps you can get a visit to see a physical therapist (your doc will probably have to write a prescription for this). just try to make it a physical therapist that has some experience with myofacial release. if a physical therapist is not available to you, call around and find a massage therapist who is familiar with myofacial release.

    you can do a search on this message board to learn more about myofacial release. good myofacial release treatments can avoid a lot of unnecessary's not a well known treatment in the regular medical circles either, so it's probably an option your doc is not thinking about. it is a non-invasive procedure, is not going to harm you, and you may be surprised with the good results.

    also, how is your sleep. your body needs good sleep to repair itself, so think about the quality of your sleep and try to address that if you are having sleep problems.

    if you have fm, be prepared to go through a lot of testing and trial and error medication prescribing, as there is no definitive means of diagnosis.
  10. RedB

    RedB New Member

    I'm not sure how things are in the U.K., but here in U.S.A., I got in to see a neurologist without a referral. I have a friend who is a nurse, and she told me about a female doc who she thought was great. She was right. I had a long wait to get in, but not as long as 6 months. Perhaps you know of someone who could help with this?

    Another thought -- being desperately afraid of what could be wrong with me is actually what made me get sicker. I had no clue, and when I felt bad, I would lay on the couch for long periods, and I was actually making myself worse. And fear can do horrible things to us. I've since learned that these types of symptoms -- pain, mixed with strange neurological feelings can very seldom kill us. They get in the way of life, yes, but fear of them can only serve to make us worse. If possible, you might want to research some of the physical things of our illness that you could do that might possibly help you feel better. Things like walking a couple times a week, some minor stretches, etc.

    I do believe that a physical therapist could help you decide if some of the numbness could be helped. And, if not, then perhaps just learning that it may not be anything to fear will be of help.

    When I was horribly sick (at my worst) I visited Mayo Clinic to find out my problem. The very first doctor I saw pretty much knew what was wrong with me. And his question stunned me. "Are you afraid you will die from this?" And, I guess that answered it all. I had already been sick for months, and I wasn't dead yet, so I guess in my head I knew that whatever it was, it wasn't going to kill me. Your pain sounds as if it is somewhat like ours. Hopefully, you will be able to get some help soon. The relief of having someone tell you "don't fear the pain", is worth all the gold in the world.

    One more thought -- if you do have some sort of problem with your system, chances are that carrying that little guy around all the time has slowly aggravated it, since this is happening to you shortly after he was born. I am currently babysitting for my 15 month old grandson 4 times a week. Basically, it kills me physically, and I now have bursitis and carpal tunnel to add to the fibro pain in my "carrying" arm. Are your pains mostly on the side that you carry him on? I guess this is the price we pay for those precious ones.

    Good luck to you, and keep us posted on how things go.

  11. RedB

    RedB New Member

    I just realized that the P.S. post I made to the above response got put in the wrong place! So sorry.

    What I wanted to also tell you is to make sure that you have your doctor check your thyroid. Hypothyroidism can cause lots of weird symptoms in your body.