Newbie questions

Discussion in 'Fibromyalgia Main Forum' started by Mar19, Jul 7, 2003.

  1. Mar19

    Mar19 New Member

    Hi all,
    I'm relatively new to this board. I'm thankful for all the information I've been picking up, even if somewhat overwhelmed by the sheer bulk of it. However, I'd rather have to sort thru a wealth of information than not have enough.

    After years of atypical pain and seeing many doctors I recently received the DX of "chronic pain syndrome". That's how I found this site, by doing a seach on CPS. As I read thru many posts I've come to the conclusion that either I too have FM, or that many of my CPS symptoms overlap. Realistically it doesn't make a whole lot of difference, as long as I can finally get some relief.

    Here's somewhat of a profile of me and my pain. I'm a 54 yr old female who has had "quirky" type pain and symptoms all my life. Everytime I would visit a doc I'd either have him/her tell me it was all in my head, or if some definable condition was found the doc would comment "we don't usually see this". When I was 4 yrs old I can remember waking up night after night screaming in pain, mostly in my extremeties. My parents took me to many doctors (most of which told them it was normal growing pains) before one finally Dx'ed me as having rheumatic fever. He admitted me to hospital for a couple of weeks and then put me on bed rest for a whole year. I mention this only because back when I was in my mid thirties, I started having cardiac symptoms and was sent to a cardiologist for a complete workup. Initially he thought my symptoms pointed to mitral stenosis, but after a battery of tests and questions, he remarked that he doubted if I ever actually had rheumatic fever. More than likely I was having some sort of panic attacks, coupled the fact that I have mitral prolapse which produces a benign murmur. I require no cardiac medications.

    The last 7 or 8 years, my "daily" symptoms progressed to the point where I was unable to work and often interfered with my daily routine. Since '97 I have also undergone several things that more than likely triggered the chronic pain to kick in big time. Here's a brief(?) history.

    '97 - hurt my back rather badly at work. Went thru workmen's comp instead of my own health insurance. The WC doc was interested only in getting me back to work to save $$. From that point til the present I have suffered significant back pain.

    '98 - rotator cuff surgery

    '00 - fall resulting in broken pelvis; also Dx'ed with osteoporosis

    '01 - lamenectomy and fusion at the L4-5 level. Surgery failed to relieve pain.

    '02 - diskectomy at L4-5 level with another fusion. Failed once more.

    This really is an abridged version of my surgeries, etc over the years. Bottom line is, my daily symptoms now include.
    Daily pain...80% of the time severe enough to keep me from functioning around the house. Location of the pain: base of skull, base of neck, trapezius, around scapular, mid and lower back, shoulders, arms and hands,elbows, hips, knees, ankles, feet, ribs, and chest wall; both my feet feel like I'm walking on hot broken glass. Almost all locations, with few exceptions are bi-lateral.

    Also have frequent sleep disturbances so I wake up feeling exhausted. I have chronic dull headaches which give way to migraines. Often feel nauseated from the pain levels. My energy level go from so-so to overwhelmingly fatigued for no discernible reason. I am also extremely sensitive to sounds, smells, and sunlight.

    Man! I'm getting myself depressed just writing all this out! LOL...And that's one other thing, I also am prone to bouts of depression...but who wouldn't be with all this?

    As for the tender point test? The points on my upper body do hurt all the time at the designated sites, trouble is that there is so much muscle spasm and scar tissue from so many years, I can barely discern someone touching the areas, even when I treat myself to a deep massage. The TP's on the lower part of my body (lower back, hips, knees) respsond when the doc touches them.

    I've started neurotonin 3 weeks holds some promise, but will be a while yet before I hit a therapeutic dosage. Also take, VicodinES, Paxil, Xanax, Celebrex, atenolol (high blood pressure), and Zanaflex (which I have almost completely cut out since starting the Neurotonin becasue that seems make me not need it.)

    Has any of this been your experience? Any thoughts to share? Any advice? I'd especially appreciate input from the moderators and any medical people on the board. I really apologize that this post rivals "War and Peace" for the sheer length, but like I really is the Readers' Digest version. I have a few other specific questions, but I'll post them in days to come singly; about now, most of you are probably nodding off, or opting to wait for the movie version of this tome! LOL
    God bless.

    Love and blessings
    [This Message was Edited on 07/07/2003]
  2. Shirl

    Shirl New Member

    Hi Mar, welcome to our world. You sure have had some very serious problems. I have read War and Peace, and you have not come close :)

    The only part that I can relate too is your pain, sleeping problems, headaches, that does sound like FM. The only med that I take is the Xanax, at 7pm for racing brain syndrome. Everything else I take is suppplements, herbs, vitamins, minerals, use heat for the pain, etc.

    My worst pain it the upper body, trigger points on the upper back, shoulders, chest (right below the collar bone), and I do have Costachondriasis, ribcage pain too. Most people with FM have this, but it does have inflammation where the muscles join to the bones of the ribs, different from the FM in this respect.

    I am allergic to pain meds, so take the supplelments and Advil gel caps for pain if its starts to spasm, and gets unbearable.

    Most of my symptoms are under control now, except for the fatigue, which I do not get too often or for too long a period like with CFS.

    I have never had surgeries, or any of the serious problems that you have stated here. Will let the others that can relate to you better than I comment there.

    If you have questions, and I am sure you do, just feel free to ask them. Many here are in the medical field and many are very educated because of their medical conditions from doing their own research.

    Another thing that is very common with FM is sinus attacks, IBS, and the problems with being mentally confused during a flare up.

    Again, welcome to the board, and I know you will get more imput soon.

    Shalom, Shirl
  3. Mar19

    Mar19 New Member

    Thanks so much for your input. I also have a lot of sinus problems. Also have had IBS for about 30 yrs, if not longer. As for the mental confusion, I find that when I'm in the most pain it seems like I'm totally unable to concentrate on anything I try to read, or search for words when trying to converse.

    Whatever this is that I have, it's a challenge to live with. So glad I found this site; there is much encouragement in finding others who have shared some of the same experiences. At last! People who understand not only the pain, but the frustration of dealing with those in your life that who don't always believe you are really ill and not a hypochondriac.

    Love and blessings
  4. Shirl

    Shirl New Member

    You sure sound like you have FM, I have been dealing with this illness for over 20 years now. It never gets any easier. Everything we do or the medical profession do is trial and error. No one has any definite answers for us.

    I totally hate that mental confusion, I have always been an avid reader, now I do have to stop and reread things over and over at times before I get the meaning.

    When speaking, I have to search for the most common words at times, I always tell my husband, that the word is in my head and can't find its way to my mouth anymore :)

    Yes, friends and family can be a problem. Its just so hard to believe that we are ill. Most of us don't look sick, so therefore to the normals, we must be fakes.

    We have all been through this too. I do understand to a degree how they feel, but it does surprise me at times that compassion and truth do not seem to apply to us like it does to those who have a 'standard' illness.

    Stay with us, we do have some great information here, and a whole lot of serious people who just simply have the stamina to keep searching for answers. We never quit, just keep trying everything under the sun to find an answer, something to help with the pain, etc.

    Take care, and I am so glad you have found the board.

    Shalom, Shirl

  5. Annette2

    Annette2 New Member

    Glad to meet you Mar. I'm so sorry you have all these problems. I have FMS and I think I also have CFS. My fatigue comes in waves it seems. I have pain constantly, somewhere in my body. I try to exercise as much as I can to keep my muscles loose. I also work part-time. You'll be able to get a lot of answers here. I think we all know more about FMS than our doctors do at this point. I'm lucky - I have wonderful doctors who "believe" in FMS and help me as much as they can. I also take Neurontin and it does seem to help. I also suffer from bouts of depression, but who wouldn't when you're in all this pain? Anyway, I just wanted to welcome you and say hi!

  6. Mar19

    Mar19 New Member

    thanks for the input already given, and thanks in advance for future input. Ü