Just need some encouragment

Discussion in 'Fibromyalgia Main Forum' started by Jacqulyne, May 21, 2009.

  1. Jacqulyne

    Jacqulyne New Member

    I was told a month ago that I had FM. It was actually the day before my birthday. Nice present huh? But because they wanted to rule out any muscle issues, I had muscle bi-opsies done on my left leg. That was by far the most painful thing I have had done to this point. They can numb the tissue but not the muscle. So I felt every bi-opsy they took. Anyway, I just got the word that those too came back normal, just like every test I have had run on me for the last 3 years. Which included countless MRI's, spinal tap, X-rays, gallons of blood work, you name it, I have had it done. They have told me that they are done trying to "figure this out" and are just going to treat the symptoms now. The rhuemy told me it was FM and the muscle doctor informed that she is done trying to figure this out now. She said that with PT it should just, hopefully, go away in time. But yet the rhuemy said it is a life long thing and it will get better but not go away. I feel lost and helpelss and like my doctors are playing a big game of ping pong with me. And like they have pretty much given up on me and trying to help me. I feel very much alone right now. I have been reading through some of the things posted explaining this horrible disease and they are so very very true. Thank you for posting them. My family does not know about the FM diagnosis. I just can't bring myself to tell them. My oldest doesn't even believe that FM exists. My husband knows and my 17 year old knows, but no one else. I'm very glad that there is a place like this where the people understand what I am going through and I can get some encouraging words. Thanks for letting me post on here and I'm sorry for being a "Debbie downer" today.
  2. Pansygirl

    Pansygirl New Member

    You have come to a wonderful place for support.

    I would suggest possibly finding a more caring undertanding doctor if
    you are able. You need a doctor that supports you not one that brings
    you down. You are your best advocate as you know how you feel and what
    is working and what is not.

    what works for each of us is different so don't give up till you are able to get
    the answers you need and get the relief from the pain you need .

    Gentle hugs, Susan
  3. debilyn

    debilyn New Member


    I'm kinda new here, but I too have FM. Some days it is nearly unbearable, yet this is a great place for comfort, many very kind souls here.

    soft hugs and lots of prayers for you

  4. Janalynn

    Janalynn New Member

    Welcome! I'm sorry that you have to be here, but so glad you found this site. It is full of wonderful, caring and knowledgable people who know first hand what you're going through.

    FM does not go away. The rheumy is right. And unfortunately there are only so many things they can try to 'figure this out' - when everything comes back normal - often the diagnosis of FM is by exclusion of other things along with your history, list of symptoms. With that being said though, it is certainly possible to have periods which are much better than others. I had some really good years and damn it all, I'm determined to have more!! =)

    It is REAL, so someone not believing it exists needs some serious educating. How can someone believe something doesn't exist when there is evidence that it does?

    I am fortunate that I have a very supportive family and a good team of Dr.'s. Before anyone even had the chance not to 'believe', I would tell them things I learned about it. The delivery was very important in my opinion. After giving the facts, I would say something like "it's so sad that so many people with Fibro are now on disability - that's how awful this is" or "many can't even work anymore, I'm so fortunate that I still can'. "many people are housebound or bedridden" etc. etc.
    I also always give updates from my Dr's appointments - anything new they say. BUT obviously you have to have a good Dr. to have any info to pass along.

    Why do you not want to tell your family? Will they not be supportive? It might give them a better understanding of what you're facing, of your limitations etc. You can only 'act' like everything is okay for so long. It's going to take it's toll on you.

    One thing I think most of us have learned is to stand up for ourselves (or try), some of us are still in the process- this is the way we are, there is only so much we can handle, we learn to know our limits, don't let others or ourselves push us beyond them etc.
    I've had Fibro for many many years - but only officially diagnosed 2 years ago. As happy as I was to learn that there was actually a name for what was wrong with me, I would say that mentally/emotionally, this has been a really rough road for me since then. I almost felt better mentally before I knew. Weird and hard to explain. However, without knowing, it's much harder to get treatment, help, understanding etc.

    YOU are NOT alone. If you EVER feel that way, jump on board! We all learn from each other, so please respond to others as well.
    As far as being "Debbie Downer"? You're not at all!!! We're here to support each other. Sometimes we laugh, sometimes we cry, sometimes we want to scream!! It's a safe place to do that!

    Right now, we have to treat your symptoms. Are you taking anything? doing anything therapies that help?
    REST, REST, REST and cry when you need to. You're in an adjustment period. Pamper yourself every second you get....a nice hot bath, cozing up with a heating pad with a comfy blanket watching a good movie or reading a smut mag. - whatever makes you happy and relaxed!

    Looking forward to getting to know you better!
  5. Jacqulyne

    Jacqulyne New Member

    Thanks for the hugs! It feels good to know that there are people who understand and care.
  6. Pippi1313

    Pippi1313 New Member

    & I'm praying you'll find a Good Doc. It does make a major difference!!!

    And we also know the importance of venting our frustrations, angers, & fears.

    You don't have to fight your emotions or deny your feelings.
    No one here will EVER give up on you!
    This place, this board, is the home of understanding & compassion, & it's a safe place for us all.

    Hugz 2 U!
  7. dannybex

    dannybex Member

    It can be very difficult, and take years, but some people do actually recover, so I hope that's encouraging!

    Most doctors unfortunately haven't a clue what to test for, or they won't run the tests you might need, so that's a big problem. But if you or your family can do as much research as possible (and check out the "what worked for me" list on this message board) -- you might begin to find some answers.

    Here in Seattle, we've had at least 7-8 people (maybe more?) from our local support group who have improved to about 75%, and four who have completely, 100% recovered. And two of those four were sick for 16 and 17 years. One was bedridden for 2 years, housebound fo seven years, and is now back at school, getting A's on all her exams. Five years ago her brain fog was so bad she couldn't remember who she was talking to on the phone as soon as her friends would stop talking.

    She discovered (after going to seven doctors!) that her main issues were intestinal permeability which caused extreme sensitivities to certain foods, plus candida, plus mold issues in her home -- a relatively new apt building with hidden mold -- plus an extreme sensitivity to even bacteria and mold growing on LEFTOVERS in her refrigerator.

    Yes, she was sick for sixteen years, but she did recover completely.


    p.s. There's a great book on Amazon by a woman named Martha Kilcoyne -- she was sick for 4-5 years, and she also recovered -- ended up climbing Mt. Kilimanjaro. The book is great -- very short, so it's pretty easy to read for those of us with brain fog issues. There are also interviews with her on the web.

  8. Jacqulyne

    Jacqulyne New Member

    Thank you to each of you that responded to my post. My heart has truely been blessed by each of you and how much you care. It is so hard to deal with FM day after day and all it involves. To go from a once very active, VERY VERY energetic person, to hardly being able to walk up a flight of steps, is devestating. Not to mention the pain, the fatigue, etc. But to know that I have a group of people that are going through it too and totally understand where my hurts are is very comforting.
    God bless each of you in a special way.
  9. Shobean

    Shobean New Member

    Dear Dan, it sounds like you have a good support group where people are getting help. I am planning on moving to Seattle within the next 2 months but, I went through hell to get diagnosed and on the proper drugs (I was suicidal due to no one believing me, painful tests,etc.) I want move to Seattle because I grewup there and found the atmosphere, etc. really works for me. I seem to be an opposite fm patient as heat makes my pain so much worse hence why i want to move.I am just veyr scared about what to do about making sure i get set up with a dr up there who believes in the judicious use of opiates and can go through my 10 yr file rather than retest me again...sorry to ramble just not sure what to do.Any ideas would be appreciated, thanks Shannon