I'm really scared

Discussion in 'Fibromyalgia Main Forum' started by ineedabreak, May 19, 2006.

  1. ineedabreak

    ineedabreak New Member

    I was diagnosed with FM three years ago after spending a week in bed crying with incredible pain in my legs. My doc sent me to the ER to rule out blood clots and then I went to a rheumatologist who diagnosed me with fibromyalgia and degenerative joint disorder as I have no cartlidge in my knees. Also have a uterus full of fibroid tumors, sciatica and carpal tunnel. Putting off surgery for tumors until I get off my HMO and on a better medical plan.

    Somehow I've managed to maintain a fairly high level of functioning until this week. This is the first week since my diagnosis that I have not snapped back from a bad flare up. I have not been able to work all week due to pain, brain fog and overwhelming fatigue.

    I am taking an antidepressant and I rotate use of pain meds and muscle relaxers for maximum functioning, minimal side effects and avoidance of tolerance.

    It seems that over 50% of the people with this disorder that I've met in the chat rooms are on disability and unable to work. I'm 45 and have a 12 year old in private school. I need to keep working. For the first time since my diagnosis I fear that I will not be able to work as long as I had hoped and I'm terrified.
  2. lvjesus

    lvjesus Member

    I struggle with fear when I have a new symptom or flare up also. I am always thinking, is this it? Is this what "takes me out"?

    I don't have any pious words of wisdom, but I can relate. On the positive side, my fears have not come to pass yet and I am still fighting and working full time.

    God Bless,
    Sonya
  3. Jana1

    Jana1 New Member

    Hopefully, this will not last and you will recover your needed functioning level. It is so puzzling to know why you are worse this time? Did you do anything different? etc etc.

    I understand the pressure of keeping kids in private school. I had three that went all 12 years, of course they all have advance university degrees now, and it was worth every dollar for education as well as our peace of mind.

    Please keep us posted on what is happening. I wish you good luck, and sorry I have no helpful advice.

    Jana
  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    You have a realistic fear there. If you have only had it about 3 years, then these next few years can really make or break your long term prognosis.

    There are two things possibly in your favour, from what I've researched about FM. First is, sudden onset seems to be more apt to achieve a full remission, they don't know why. Slow onset seems to end up in disablement more often. That was me, probably because you don't realize what's happening until you are too bad, and the disease has really set in, me to a tee. The other thing, is you seem to have secondary FM, and again, I have primary which usually is worse. Secondary FM is when your FM is brought on by some other disease or stressor. In your case, you listed several other painful conditions that aren't part of FM syndrome, and the pain and stress of them on your body brought on FM for you.

    I'd take this opportunity, the one I didn't have because I had no dx to work w/ and warn me, to take better care of yourself. Try and be pre-emptive, and work w/ your schedule to get more rest. Maybe your job will allow you to scale back your office hours and do some work from home, that can make a huge difference, and still get you a full time salary.

    I'd also at least consider whether it's worth the risk of disabling you, to carry the stress of "having to" keep your child in private school. It's just my opinion, that if I was your kid, going to public school (and there is always a good one to be found), would be far less traumatic than seeing my parent fully disabled.

    Hope there is something helpful here.


    Jeanne
  5. ineedabreak

    ineedabreak New Member

    thanks for the encouragement Sonya and the blessing - the prayers all help
    [This Message was Edited on 05/19/2006]
    [This Message was Edited on 05/19/2006]
  6. ineedabreak

    ineedabreak New Member

    Jana I did do something different. I usually take two days a week to sleep ALL day and then I sleep all night again. That's what's been keeping me going and I haven't done that in a few weeks. Time for a reality check

    Thanks for the input
  7. ineedabreak

    ineedabreak New Member

    I do have an appt with the new gyn in a few weeks. Usually if you an prove no lapse in covereage, the new insurance covers all. I'm also concerned about recovery from surgery while trying to plan a wedding and bar mitzvah and work and everything. I do need a break.

    Thanks for your feedback
  8. ineedabreak

    ineedabreak New Member

    I will take better care of myself - usually do, but got carried away with being supermom, etc. I think the fibro is primary and also CFS. I've been struggling for a long time. Who knows maybe it's secondary and I'll pop back easily.

    Luckily and unluckily I'm self employed. I can make my own schedule and take days to sleep. The bad part is that I don't get paid when I don't work and have no benefits.

    I live in Miami where the schools are ridiculously overpopulated. My son has two more years of middles school and then he'll go to a public high school. The benefit of private school is worth the effort. My husband is working his tail off also.

    My mom spelled her neame Jeanne also so your message felt like a hug.

    TY
  9. NyroFan

    NyroFan New Member

    ineedabreak:

    You will probably know when to stop working. I remember the day I quit and said 'no more'. It was a difficult thing to do, but my health came first.

    If you can not work: it is that simple--don't.

    nyrofan
  10. sisland

    sisland New Member

    your life sounds alot like mine was for years! the only thing i know for sure is that the longer i put off medical treatment the worse things got!!.....................................Please if at all possible take all these symptoms seriously and get treatment!....................................................My thoughts and prayers are with you!!........................sisland P.S. i put off treatment for 10 years and now have full blown fm. mps and a lot of other problems!!