Newly diagnosed (finally...)

Discussion in 'Fibromyalgia Main Forum' started by goofgirl, Sep 13, 2008.

  1. goofgirl

    goofgirl New Member

    I lurked and posted here a couple of years ago when I first believed I might have CFS. I am 31 years old, and for the last two years have had constant fatigue, widespread pain and frequent colds and infections. As most of you have experienced, I was treated for my symptoms time and time again, always taking antibiotics and nasal spray for my sinusitis, and being told my lymph nodes feel fine, and we don't know why you are having pain. Lose some weight, go on a lowfat diet, and start exercising.

    I finally pushed the issue and asked about CFS. The nurse practitioner pretty much laughed at me and said, "you just have mono." So I nicely asked her to test me for mono, and along with that she tested my thyroid, which was found to be hypo (Hashimoto's Thyroiditis). After several months of innefective thyroid treatment by my family doctor, I switched to a PPO insurance and went to an endocrinologist. She switched me to Armour, which made a huge difference.

    Almost a year later, though, my fatigue is getting worse again, and I'm on my third sinus infection this year. I've taken so much time off from work, including using my vacation time for sick leave and leave without pay, because I can't stay healthy. After trying a new family practice doctor and basically being told, "I don't have time for you," I took my health into my own hands. I researched and found a medical group that specializes in CFS/FM and thyroid and hormone issues. I called Wednesday, and they had a cancellation that same day. I drove 80 miles to their office, but I had face time with the doctor for almost two hours!! A couple of tests were done, but most importantly to me, he listened, read through my medical records, reviewed the 30 page questionaire I had to fill out, and believed he could set up a treatment plan that could help me.

    I was diagnosed as having both CFS and FM, with an underlying thyroid condition he feels is still not being treated optimally. I finally have a diagnosis and a sense of hope for the future. I feel like I can now be in control, because I know the enemy I am fighting. I have decided that I need time to heal this time, as it's been 4 weeks and I still have the latest sinus infection and ear and lymphnode pain. I will be taking several months off from work, which won't be easy on me and my husband, but I think in the long run, it's the best thing to do for my health. If anyone has suggestions and advice for me, being recently diagnosed, I'd appreciate it. The last couple of years have been hell, in many ways. The isolation and judgement of others; the difficulty doing the simplest tasks every day; the ever narrowing scope of life... these are things I will be happy say goodbye to as I start to recover. It's a new day!

    Thank you for reading, I look forward to getting to know you all again.

    Best regards,
  2. tandy

    tandy New Member

    Glad your back with us~ Welcome :)

    tho sorry you have to be here.
    BUT, this is the best place I've found for good chat/info on the 2 illnesses CF and FM.

    I bet its finally great to at least know what your dealing with?? I was so happy to get an answer for all my pain symptoms.(many yrs ago)
    hope to see more of you~
  3. findmind

    findmind New Member

    DO, PLEASE, make sure it is documented why you are taking time off of work; if you can possibly do so, take short-term sickness leave first.

    If it becomes long-term, take LTD, and if you don't recover in 6 months, file immediately for social security immediately. Your records will support it.

    Look up SSDI here; there is a ton of good info already discussed ad infinitum, LOL!

    Best of luck and recovery to you!
  4. fallenstar1962

    fallenstar1962 New Member

    Just a quick note to say hi and welcome. It's an awesome place for information and encouragement. Take care and hope to see you around soon.

    Soft hugs
  5. goofgirl

    goofgirl New Member

    Thank you for the advice on disability; I did file the paperwork last week with the state disability insurance, as well as the FMLA paperwork for my employer. I had missed so much work off and on, the doctor and I both realized I wasn't functioning and needed to take disability leave. Plus at least we've started a paper-trail with an honest to goodness MD who is willing to diagnose me. At a time when stress is the last thing we need, why does it seem we end up having to deal with more of it? I feel I'm doing the right thing for my health, though, so that's what matters. I'm happy to have access to this message board, as it's such a comfort and support to know others are dealing with the same issues.

    Thanks again!
  6. vannafeelbettr

    vannafeelbettr New Member

    I myself was recently diagnosed with FM after suffering over a year. The people on this board are wonderful and I have received soooo much information, it's been a gift. We're all in this boat together and hopefully we can all one day arrive at our much wanted destination.

    Best of luck!! Vanna
  7. lrning2cope

    lrning2cope New Member

    I'm sorry you had to go through so much to get a good doctor. The wonderful thing is that you found one !Now you can stop using all your energy ( what's that ? ; )on getting better instead of having to use it on finding someone to help.

    Take care and I will keep you in my prayers that you feel better and feel more rested soon.