New Member needing to vent just a little...

Discussion in 'Fibromyalgia Main Forum' started by Sheri-Lee, May 17, 2006.

  1. Sheri-Lee

    Sheri-Lee New Member

    Hello, I'm 38 years old and have been suffering for about 12 years now. I was first told I had FMS/CFS about 10 years ago and was prescribed a number of medications. At that time, I had two small children and didn't want to experiment with possible side effects, I just managed to accept and cope with the pain. Over the past two years, I had developed new symptoms as well as a new doctor, after a number of blood tests, I was told that I may have Lupus. My doctor started me on Prednisone until I saw a Rheumatologist. Well, after a 10 min examination, I'm back to having FMS, although another 7 tubes of blood were taken for more tests. I'm sorry but I am very frustrated at this point, all I want is a proper diagnosis. The pain that I suffer now is much different and more intense than I have experienced in the past. This is my first time communicating my illness to anyone outside of family and I hope that I did not come across as a complainer but rather just one needing to vent a little.
    Thanks for listening.
  2. NyroFan

    NyroFan New Member

    Sheri-Lee:
    You certainly do not 'come across as a complainer'. Thankfully you are in the right place. I find your story very compelling because you dealt with the pain so many years without meds.

    Now that your children have grown more can't you take some pain meds to get relief and normalize somewhat. I know when I took no medicine I became less and less mobile.

    It sounds like it is time for agressive treatment. Hey, hang around here. Everyone is so caring and itelligent on the diseases that there is an education every day.

    You take care,

    nyrofan
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I'm 38 too, and I've also been suffereing longer than I've been diagnosed. My environmental illness dx came first, that one was obvious because I progressively became allergic to near everything. FM was harder to pinpoint because my symptoms were so sporadic, w/ longer remissions than flares for many years, it was easy to explain it away as sprained muscles and the flu for many years.

    I love this line you wrote:

    "Over the past two years, I had developed new symptoms as well as a new doctor..."

    that just tickles my funny bone like crazy. We have so many bad experiences w/ docs, that docs can almost be worse than the syndrome at times.

    One thing I'd do, is maybe put my foot down w/ your doctors concerning your dx. if you are in the States, you are paying every time a new doc wants to find something besides "just" fibromyalgia to explain your growing pain problems. Lupus is a bad fit, because FM tends to be much more painful than Lupus. My fiance's Mom has lupus and she's so much more functional than I, and only takes milder painkillers off and on. Her biggest problem is fatigue, but she still works, and isn't chemically sensitive at all.


    Jeanne
  4. mom4three

    mom4three New Member

    I was where you were about 2 months ago.

    I have been dx since 1998. I have had the pain you have for 2 years and wanted a proper dx too.. I just knew something was wrong other then FMS. But it isn't. It is FMS.
    I went through blood test, MRI, cat scans the whole works.

    We just adjusted my meds and it is warmer here now so I am a little better.

    But I just have to take it one day at a time and know that I may feel horrible at any moment. Like today. But to try and deal with it emotionally. I see a counselor now and it helps me get to terms with this.

    Good luck to you and please know you are not alone and your are not complaining. And it is OK if you do that too.

    I am 30 by the way.
    Tracy
  5. janieb

    janieb New Member

    I'm new here, too. Never attended a support group, etc. Saw a doctor only when the pain was so bad I couldn't stand to have anyone touch me. I've had it for about 15 years. The first 3 they diagnosed it as depression (was I ever) and later as fibro. I'm 62 and was forced to take early retirement when I couldn't deal with the pain any longer.

    Today was brand new for me. My (new) doctor wants me to try upper body exercise. (I'm also hyperflexible) This is a bad combination along with arthritis in the shoulders and spine. I dreaded going in for the fitness program.

    Guess what, it was great! Everyone was happy, perky and having fun. They were helpful and I'm more than willing to go back (that's if I can get out of bed tomorrow).

    There's a very good book about fibro by Dr. Paul St. Armand. If you haven't read it, I would suggest you get one. It lists the symptoms and various steps and if your doctors are having trouble diagnosing you, this should help. It was like the story of my life.

    Hope I was some help.

    Janieb
  6. Sheri-Lee

    Sheri-Lee New Member

    My children are 12 and 14 now and are very helpful, especially on my "bad days". I am currently taking trazadone to help sleep(haven't slept in about 10-12 years, getting a little tired now), I also take Tylenol#3 for pain but that's it. Haven't been given anything else yet. I live in a small town in northwestern Ontario, Canada. We only have a handful of doctors which you can only see about 4 times a year. Our nearest specialists are found in a city 4 hours away, so getting a doctor to stay focused on your illness is pretty much impossible. I am learning quite a bit by just reading all these messages. Although some of the drugs and tests are not available in this area.Thanks again.
  7. jenni4736

    jenni4736 New Member

    I've had Fm for 12 years or so myself...well a diagnosis anyway. I was Tylenol/Aleve controlled until about Feb. of 04'. I am 34 with 3 kids myself.

    I spent 04' on increasing amounts of Neurotin and Ultracet. Finally I was on so much I felt as though I was drowning. My symptoms improved and I went off of everything. My kids were little so I hated being medicated.

    I was fairly pain free with just a few bad days most of 05'. Then I had major dental work, we had a lot of fires in the area, and things went down hill. By Nov, I was searching for a new Rheummy and struggeling for help.

    It is hard to explain this DD to anyone when we question so much ourselves, isn't it? I had the same problems...they thought I may have Lupus too, but they have ruled it out...I think.

    I think what it sounds like is similiar to my experience, and many others. What I have learned lately is that these auto-immune issues often bring their friends. In other words, when the immune system is out of whack, other issues can come up. You may have more than one auto-immune disease as many of us do. The other option is that the FM has just progressed.

    I have had severe allergy and chemical issues,bloody noses, staggering gait, stomache problems,etc. ALL of these are new for me. The pain and the fatigue are much worse this time too.

    I am playing what I lovingly call "go fish". It seems we are always in search of 1)a diagnosis 2) a doctor who knows of the disease and has a small enough ego to be patient to actyually help us and 3) love and support from those that we love the most.

    I am glad you found this board. There are many very supportive people here who are on a similiar journey. Try to be persistant but patient. It took years for most all of us to get a firm diagnosis.

    I have found a good spirit and learning to roll with the adventures of this journey take you a long way.

    If your spirit is frustrated because of the diagnosis (or lack of) then you mind set can really send your body into a tail spin. Keep your mind strong and read all you can. You can always come here for support and question anytime....someone is always up....

    jenni


  8. Pianowoman

    Pianowoman New Member

    There are quite a few of us Canadians on this board. I know it's harder in Northern Ontario. This board is great, though. You will get lots of support and information. There is a search feature at the top left and you can read old posts.
    Your feelings are all very valid and very common. You can say whatever you feel here. Hang in there!

    Kathy.
  9. mme_curie68

    mme_curie68 New Member

    Welcome to the board!

    I can thoroughly understand your frustration.

    It took 13 months of non-stop doctor's visits for me to get an answer.

    The trouble is that FM can present with similar symptoms to many other illnesses - RA, Lupus, Multiple Sclerosis, Lyme Disease.

    Unfortunately it often takes time and more than one specialist to figure things out.

    I was blindsided by FM after a high-risk pregnancy and delivery of my second child.

    I referred myself to a rheumatologist, because I had seen everybody else and no answer. My thinking was, this doctor is a "big-picture" person - they can look at a huge list of symptoms and winnow them down pretty efficiently.

    Most of my problem was FM, but not all - I also found out that I have Osteoarthritis in my feet. That caused me tremendous pain.

    My horror-show pregnancy also left me with a malfunctioning endocrine system with post-partum thyroiditis and my blood pressure went haywire as well.

    Since I've had my dx, I have been working together with my primary doc, and my psychiatrist. Between the two of them, I got treatment for the bone-crushing fatigue, the muscular stiffness and the pain with full-time NSAID therapy. The difference this has made has been tremendous.

    It has enabled me to be functional at work and in my life. It's not perfect - but I now know for sure that my life, as I knew it prior to FM is gone.

    I have to plan, carefully, what I do, where I go, etc. If I overdo it, it can ruin my whole week.

    I'm trying to eat well and have added many supplements. I am also trying to get an hour yoga class at least 3 times a week to keep me stretched out and for low-impact exercise. Swimming is also easy on my body.

    I can no longer do a regular "gym" workout - too much demand on my musculoskeletal system.

    My doctor told me it can go three ways, 1) it could be a limited episode lasting a couple of years and go into remission; 2) I could always have it, but at least be stabilized with supportive medications and 3) it could get worse and develop into further autoimmune disorders like RA or Lupus.

    I am hoping for 1 or 2, but an awful lot of people here go to 3. This message board has been a lifesaver.

    It's great for medication and supplement ideas and the emotional support has been invaluable.

    So welcome, you're certainly not alone here!

    Hugs,
    Madame Curie