New, and need help.

Discussion in 'Fibromyalgia Main Forum' started by softlyrising, Sep 13, 2005.

  1. softlyrising

    softlyrising New Member

    Hi everyone. Though I have not been diagnosed with fibromyalgia, I hope you won't mind me posting my story and questions here.

    Last February, I began suffering with Interstitial Cystitis. This June, as I was trying to battle this, I suddenly began experiencing chest pain. After many normal heart tests results at the ER, I was finally diagnosed with Costochondritis. After this, other strange symptoms quickly followed. Here is a list of the problems I have been experiencing:

    Forehead tension
    Inner tremors
    Heart palpitations/fast heart-rate
    Severe ear congestion and cold symptoms w/out reason
    Jaw pain/jaw popping
    Swollen lymph nodes
    Sometimes feeling sore to the touch all over
    Lots of numbness and tingling all over my body
    Muscle stiffness

    I have been researching fibromyalgia and because of these symptoms, and because fibromyalgia is a sort of "sister disease" to interstitial cystitis, am suspecting that I have it. However, I understand that the main symptom of fibro is pain. I do have random sore spots all over my body -- places that hurt when I press on them -- and I do get random aches and pains frequently that aren't really severe and don't last long. But I don't really feel that my body hurts all over. The secondary symptoms -- the weird, uncomfortable stuff -- is what's bothering me. So I'm not sure if I'd really be a classic fibro case.

    I have been tested for allergies and thyroid disease, have had nerve conductor tests and many, many blood tests. All normal. When I ask a doctor about fibromyalgia, they look at me like I've just sprouted a second head. They're generally convinced that it's "anxiety" and tell me to take Tylenol. I know my body better than that.

    I'm hoping that some of you kind people could tell me whether you think considering fibromyalgia is unreasonable considering my symptoms. Should I find a rheumatologist, and is it difficult to find a good one who will test for fibro? Also, I believe that I have developed depression as a result of this, so advice on coping with all of this would be great, too. Thank you so much.


    By the way, I just turned 21 and am a college student living in Washington state.

  2. over50

    over50 New Member

    You have been through so much already with your health.
    On the top of our listings here are Drs who others say are caring.
    Please dont let ignorant people make you feel bad.
    YOU know you dont feel well.
    Try to find a caring Dr.I hope someone else here has some good advice for you.
    Take care,we are here for you.
  3. jaltair

    jaltair New Member

    Now, find a rheumatologist. A rheumatologist will do an exam and test for the "tender spots." Be sure to write down all of your symptoms and questions and take those with you to the rheumatologist.

    If you have to go through your primary provider to get a referral, ask your primary for the referral. You don't have to justify the referral for the primary. You are the one who doesn't feel well and needs to have more physical evaluations than have been done!

    Be happy that your tests are normal. Many people with FMS have perfectly normal tests. That is the problem with FMS, the tests that prove something is wrong are usually all normal and there is no specific lab or other test that indicates a specific problem exists. FMS is a syndrome. It isn't life-threatening, thank goodness. However, the problems are real and not just psychosomatic problems. The symptoms can be treated with medications. There are medications that help with getting sleep (one theory is that the FMS is due to poor sleep patterns because of a dysfunction or dysfunction of neurotransmitters or alterations in melatonin), medications to help deal with the pain, and medications that may help alleviate the depression.

    Keep searching for help. Start with a rheumatologist to get a true diagnosis of FMS. The rheumatologist will start you on the proper treatment for your symptoms should you have FMS.

    Good luck!

    Warm Wishes, Jeannette

  4. ldbgcoleman

    ldbgcoleman New Member

    I had the same type of pain you are talking about plus stiffness in my joints. I have not had to take anything stronger than over the counter pain meds so far. I usually can tough it out.

    My main problem has been extreme fatigue. I have the tender points you are describing. I would use the good Dr list or try the Fybromyalgia and fatigue center in Seattle.

    You can also make a post asking for any good Drs in your town and see if someone responds! Good Luck Lynn
  5. lease79

    lease79 New Member

    ~*Gentle Hugs*~ hun, I have alot of the same symptoms as you do, & the bad pain with me comes & goes.
    I agree with whoever said to get onto a rhumetologist, they should be able to help you with a dx of fibro if that is also what you have ;)

  6. fificat

    fificat New Member

    Hi Megan
    I'm only 23 and when I was only 17 was DX with costrocondritis. When I frist started to get my flare ups of FM I had some of the same symptoms as you but I had horrible triedness. I couldn't stay awake to save my life. And over the months the pain just got worse and worse until I was in tears. but for me the pain is the worst at night. But hey everyone is different.You need to find a Dr. you are comfortable with and you can turst as the wise ones here have taught me. These people can really teach you alot..I too just joined.

    Lots of luck
  7. rileyearl

    rileyearl New Member


    I live in Renton--south of Seattle. I hope you don't have fibromyalgia, but you should find out, so you can learn how to stay healthy and lead a fairly normal life (whatever that means.) Some of your symptoms sound like it. My diagnosis was triggered by a false heart attack and lots of tests like you had. Guess what? My heart is just fine!

    There is a Dr. Holman, a rheumatologist who specializes and does research on fibromyalgia. He happens to be in Renton--near Valley Medical Center. One of the other people on this message board, Musica, sees him and really likes him.

    My diagnosis was in July, so I'm new to a lot of it. But, I read a book about the first year of fibromyalgia--I think the author is named Claudia Marek--and the symptoms were like a map of my life. I'm 52 and didn't have the pain or foggy head symptoms until just recently, but many of the less disabling symptoms have been with me at least since I was 15.

    I was lucky enough to find this board and learn a lot about fm right away. I learned that many people spend years trying different docs and treatments before they find someone who can help them. Others have gone to the Fibromyalgia and Fatigue Centers around the country and seem to be faring well from those experiences. I decided not to mess around and went to the new (6/2005) center in Bellevue, WA. I've had one appointment with Dr. Marti there and feel really positive about it. You can read about my experience and others with FFC by searching either FFC or FFC Seattle.

    Best advice is to arm yourself with as much knowledge as possible and don't waste any time listening to doctors who don't listen to you.

    Good luck!


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