At what point do I stop looking for other disease and accept

Discussion in 'Fibromyalgia Main Forum' started by MoreBoo, Apr 19, 2007.

  1. MoreBoo

    MoreBoo New Member

    I have had fibro for approx 12 years. But things seems to be getting worse with my fibro. My pain is constant and I am taking more pain medication then ever before (still within the prescribed dosage).

    I am always looking for another reason I am sick other than the fibro. So my question is "When do I accept this dx and stop looking for other causes?" I, like many others who suffer from this disease, have other health issues. I always feel like "I couldn't possibly feel this bad from fibro alone".

    I'm seeing my PMD on Monday and want to prioritize my questions. Can anyone help/counsel me on this? I feel like I always tell the doctor- everything is the same, but I need more pain relief.

    Right now things are so bad that my social life is almost nil. I retired 3 years ago due to this disease and now I feel housebound 95% of the time.

    Any help, suggestions, opinions are greatly appreciated. Thank you!
  2. momof471

    momof471 New Member

    I think the majority of us are seeking more answer's, to find where the root of this is coming from. I know I get so tired from thinking about it and looking for answer's and I just need to learn to live with how I am now, I think its ok to do that, because this disese does not need to be your life. Then there are those times, like today for me, that I'm faced dead on with my limitations and it ticks me off to no end and I want to find answer's there has to be something else. I keep in mind though that there are many things that take a long time to show up and it may be that withe which we are dealing.

    For your doctor make a list, it helps to keep a journal of what aggravates your pain, what makes you feel worse, what you do to help your self feel better and so forth.

    I'm sorry you have to go through this, it changes our lives and the lives of our families around us. Hopefully one day there will be and answer.

    God Bless
  3. jole

    jole Member

    I understand completely. Have been housebound for awhile now, and had a good day yesterday. I honestly wanted to plant flowers. My hubby said he'd take me to get some today and I was so excited. But when I got up I couldn't walk, had no energy, etc. and went right back to bed. I always forget how bad it is when I have a rare "good" day with a little energy.

    I still try to analyze my situation and find a CURE when I know there isn't one, and simply do ont want to accept this, even after 4 years. This is not living, and I want to live again.

    As far as the doc, I find myself hiding symptoms even from them. If they are not the most important ones, I don't say anything for fear of being put down. this board is my social life these days. I have no suggestions for you, but do understand.
  4. rockyjs

    rockyjs Member

    It's taken me most of my life to get answers and sort out the different causes for my various conditions. I now know I have four genetic diseases...two of them, Ehlers-Danlos Syndrome and Celiac contribute to fibromyalgia, but I have only been diagnosed with them in the last year.

    It can help to take a break and then come back to it all with a fresh outlook, but don't give up. There are physiological reasons for conditions like CFS and FM that haven't been discovered or acknowledged yet. We're not crazy - there really is something wrong. Sometimes we just have to wait for the science to catch up with the experience!

    Jan
  5. MoreBoo

    MoreBoo New Member

    Yes, I do have Hashimoto's thyroiditis. I had to practically camp out in the doctors office for him to do anything about it. My thyroid was huge, but all he was concerned about was "Is it cancer?" At my suggestion he ran some more tests and bang - Hashimoto's. I was immediately referred to an endocrinalogist who couldn't believe I had been living with this for so long. Whatch gonna do?

    I am still convinced that the Hashimoto's along with a complete hysterectomy (ovaries & uterus), and a horrible case of endometriosis all hitting within 5 years has something to do with fibro. I developed the fibro symptoms very soon after all of this was dealt with.

    I guess that is why I keep looking for something else. The doctor told me everything was fine when I had Hashimoto's - I had to do the research and tell him how to figure it out.

    Also, there is some part of me that wishes I atleast had a disease that the medical community and society takes a little more seriously. If you say you have MS or Lupus people understand that you are dealing with a chronic disease. If you say you have fibro they will come up with everything from - "Oh that doesn't exist" to "Oh, my friend had that and she just had to exercise more".

    Ok, I'll stop ranting. I really don't want another or different disease. I just want to be taken seriously and not be excused as a crazy person.

    Thanks for the help.
  6. GigglePoet

    GigglePoet New Member

    Mystic,
    Thank you so much for sharing with us about Montell and his going through 23 doctors before diagnosis...Oh goodness!!!! and he has the best at his disposal. Well dispite what could be discouragement brought on by that, I am encouraged by this information and it helps me keep going and looking. If Montel can do it, then we can to.....

    Hugzzzz GigglePoet
  7. Elisa

    Elisa Member

    Stop only after you have been cured.

    Accepting your illness is good, but seeking answers and relief is very healthy.

    For me, hope is everything.

    Elisabeth
  8. obrnlc

    obrnlc New Member

    hi moreboo and others--
    it is so hard to give up and accept "just fibro", i agree w/ froggy that as a nurse, we look for black and white, i was also sure i has bone cancer!

    then when i finally started to accept this a few months ago, saw a new neurologist who put a bunch more ideas into my head, when i asked her if she thought it was "just fibro", she sort of rolled her eyes, and i said "don't you believe in it?"
    She answered back "oh, i BELIEVE in it, I just HATE it because I want to see black and white"--just like i have been for 7-8 years!

    i guess its cuz so many med. people and family members, etc. downplay our DD to "just fibro" and of course, everyone knows 2-3 people who have it and THEY certainly aren't incapacitated by it, they take a few motrin every so often.....etc.!

    we end up feeling guilty for having such a thing and want to find something that people believe in, no matter how bad it is, just so we don't look like we are crazy!

    regarding your doc appt.--jot down your pain levels for a few days so he can see your activity levels associated with pain levels, and how often the pain is an 8-9 when you are doing NOTHING, and this helps a doc to understand it a little better.

    good luck--L
  9. romalaw

    romalaw Member

    I think you raise a question that we all struggle with at some point and continually revisit. When do we quit looking for a better dx and just accept the fibro or cfs.

    My experience is that there are stages we go through with the illness, similar to Kubler-Ross' stages of grief. First for me was disbelief and shock, second was resistance, (the stats don't apply to me, I'll beat this beast, third was an obsession with learning as much as I could about the condition, still believing I could cure it, if I just found the right treatment, then came actively experimenting and doctor shopping. There are more, but after 9 years, I'm trying to strike a balance between finding some quality of life, acceptance, and still continuing to tweak my treatment.

    I'm reluctant to say this on this board but I still don't tell many people I have CFS, it just sounds so lame. When I was first diagnosed with fibromyalgia, (laster to be re-diagnosed as CFS), I wouldn't tell anyone. Even though I know better, just the name Fibromyalgia sounds like some kind of psycho-somatic disorder. I too wish these names sounded like something more substantive and recognized for its seriousness, like lupus of MS. Everyone knows I'm sick and have been sick for a long time. Mostly, I just tell people I have an auto immune disease and leave it at that, they rarely asking any further questions.

    And, yes, I realize my shame around my illness does nothing to raise awareness of these conditions for my family and friends.
  10. poeticbobbi

    poeticbobbi New Member

    What I mean by stubborness helps is.When I am knocked way low with the FM symptoms it ain't long before I get a bit angry and use whatever strength I can muster and tell FM "not today",tired of the disease runnin my life.Ok so it doesn't work all the time but it does work.Even if I am movin in slo' mo' at least I am moving.
    As for looking into causes other than FM,I'd say never give up on research.Ya never know you may be the very one to find the answer to this whole thing-(smile).
    I am still looking seeking searching and all though many don't believe it to be so for them,after all my research I am soooo leaning toward the yeast factor.One of the symptoms listed under yeast overgrowth is Fibromyalgia itself.
    So keep doing your research until you find your answers and what makes your health and life better.
  11. basket21

    basket21 New Member

    I went thru years of not wanting to change and fight with myself to be the person I once was before. I wasn't winning the fight. Only acceptance gave me the peace of mind I needed. OK now I can't garden, do household chores, even the basics,shop,outside interests and clubs,even cook...you can't cook when you are on 2 canes. I went thru the stages of death of a loved one.
    I can't change this so accept it. When you do go out have a good time as you will be back soon enough to your usual days. Make sure you have activites you like ie computer,drawing, writing or painting for example. It helps to put in the day without dwelling on what we cannot change and helps the time go by as well.By acceptance I don't mean religion.
    This is my personal experience, maybe some of you think I'm out in left field,that's ok too.
  12. munch1958

    munch1958 Member

    Most doctors are not looking for the root cause of an illness. They are just giving you meds to treat your symptoms and saying it's fibro. I have endometriosis, sarcoidosis, Lyme disease, eczema, migraines, hypothyroidism, food allergies and Celiac disease.

    Keep digging to find something that works for you. Have you tried seeing a doctor that specialized in FM patients? I don't mean a rheumy or a pain clinic. I never got any help there finding the root cause but got badly needed pain meds. Look for wholistic doctors that are very open minded and try to find one that will do additional testing.

    Have you tried allergy testing or an elimination diet? I got tremendous results with going gluten free. The Specific Carbohydrate Diet helped me a great deal.

    I used to be president of the Chicago Chapter of the Endometriosis Association. Most women with a history of endo need to be on a candida diet for life. Have you tried that? The EA has found women with endo have very low natural killer cell counts. Yes, our immune systems stink!