Please help - I'm scared!!

Discussion in 'Fibromyalgia Main Forum' started by GooGooGirl, Jun 30, 2003.

  1. GooGooGirl

    GooGooGirl New Member

    OK, this is getting really scary. I thought that FMS was not a progressive disease. If it's not, then why am I getting worse? I was trying to walk up a very small hill this past weekend and I almost did not make it. My legs were burning and aching so bad I honestly felt like I was going to have to stop. Every step was like climbing a mountain. I have foot pain, leg pain, lower back pain, arm pain and neck pain. I think I am dying - seriously. I'm also finding it hard to catch my breath. Please someone answer - is this a progressive disease? I was never this bad before!! HELP!!
  2. Kathryn

    Kathryn New Member

    as is every patient. I have discovered that my flares tend to vary in intensity. Some are excruciating, while others are only disgustingly uncomfortable. During the worst ones, going from bed - bathroom, about 12', is almost more than I can manage. In a milder flare, I don't feel like doing anything, but can usually force myself to handle easy tasks if I take frequent rest periods. It does not take long for muscles to deteriorate following a period of disuse. If you ahve been down for a day or two, the symptoms that you describe would sound normal and should go away with rest. Then start in again, only more slowly. With any new symptom, it is always a good idea to check with your doctor just to rule out any unpleasant surprises.
  3. GooGooGirl

    GooGooGirl New Member

    I don't know that I actually have flares. This is pretty consistent, I feel like this all the time. I never have a good day. I never have a time that I can walk far, I can never vaccuum without severe pain in my back and getting completely out of breath. I'm scared and I don't know what to do. The last time I went to my doctor, he basically said I need to go on anti-depressants for the depression and more or less I'd have to live with the pain - and this is a doctor that has been able to help other Fibro patients get disability.
  4. suz41

    suz41 New Member

    I undersatnd where you are coming from. I'm in the middle of a flare that began yesterday after two fairly good weeks. Are you able to identify something that occurred or a change in your lifestyle that is making you feel so bad. I know in my case I took a small girlscout troop on an overnight camping trip(cabins), however the food was not what I would have had here at home and I did overexert . So I wasn't all that surprised when I woke up yesterday morning and my arms and hands and my legs ACHED!!! Luckily my clients that I see during the summer are on vacation. I have been laying low today, will probably take a good long bath and do some mediatation this evening and hit the sack early. Are you on any meds or have you talked to your doctor about supplements or pain relievers? I hope you feel better soon! This too will pass for you. Take Care.

    Suzanne[This Message was Edited on 06/30/2003]
  5. mamafurr

    mamafurr New Member

    just wanted to share, my fm is constantly getting worse. this is not a positive thought obviously, but what can i do? try to stay upbeat and give myself allowance/acceptance if i don't feel like it, don't do it. it really sucks. my doc said sometimes the fm just goes away...poof..gone. so maybe there is light (pinprick) at the end of the tunnel.

    one other doc put it this way....(the pain and sickness was scaring me bad) and i asked him if he thought i had cancer. he said, if it is, i guess it is the best kind to have because it hasn't killed you yet. not to sound disrespectful to others w/cancer, but it made some sense. guess what i'm saying is if you don't have any other life threatening illnesses, we just must learn to live with this dd. and know it won't kill us....physically that is. i hope.
    take care.
  6. shell

    shell New Member

    You have the right to be scared and confused and angry and everything else! I have thought off and on that I have been dying for 9 months now. Mine came like this - First the aching... then the fatigue... Then a new symptom every 3 weeks!!! I finally saw the pattern and it was very strange indeed! But yes I have read so many different ways it has hit people. I still wonder if I have a serious medical condition that hasn't been diagnosed. (OK well I do it is CFS and FM). I really don't know how long it is going to take before I know that I am not dying from something because of all of these crazy things happening to the body!! I am getting more and more use to the pain if that is possible though. Hope your progression levels off. Mine finally did after finally getting the headaches. Then my flair finally let up for a month or so. Then I flaired again - this time same symptoms minus one or so but with dizziness.
  7. nje

    nje New Member

    trust me and the others who answered before me,this disease hasn`t killed anybody yet,as i know of,its simply a chronic disease,a painful one for sure;but not a deadly one. i`ve done loads of reading and research on this fm and cfs sounded like you were in a bad flare,and i`ve been there and yes you do feel like you are dying,but take heart,you want,not from that long have you been dx. with this? it don`t sound as if its been too long at all. you`ve got to learn to take care of yourself,do not overdo,thats the 1 thing that`ll throw you in a flare quicker than anything. i finally learned that after about 6 times doing just that. now i take care of myself,if the house falls down around me;it`ll just have to,i`m tired of suffering for doing things i know will hurt me. if you have the right meds and take care of yourself,(don`t let nobody make you feel guilty either) you should improve greatly. hope you get better nje
  8. GooGooGirl

    GooGooGirl New Member

    Thank you for your responses and your support. It's so nice to know that I am not alone. I can't help being scared. My fear is that I have some other terrible Neuromuscular disease and they just haven't found it yet. I was diagnosed a little over 2 years ago and have had a very hard time accepting this diagnosis. I made an appointment today with a Rheumy in my area from the referral listing on this site so I will see what he says. Thanks again.
  9. Mikie

    Mikie Moderator

    Sweetie, no one knows whether or not this is a progressive disease. I have both FMS and CFIDS and I am getting better.

    Also, no one knows why we have periods of remission and flares. Sometimes, we can identify what causes us to get worse. One of the best ways to do this is to keep a journal. Record any exposures to chemicals or pollution. Record your meds and what you eat. Record anything which might be of significance like pain, chills, sweats, fevers, swollen glands, etc., etc. This will often allow you to see a pattern.

    Stress is the worst thing for us. Any stressful events or worry can bring on flares or make existing flares worse. I know you are scared and this is hard, but you absolutely must learn how to destress and relax. Do whatever it takes, Yoga, Tai Chi, meditation, therapy, relaxation tapes, whatever.

    I don't know what you are doing for treatment, but there are many options that have helped many of us to live decent lives. It is a process of education, trial and error, and patience.

    Just coming here is the best thing you could have done. You need a good doc who either knows about our illnesses or is at least willing to learn and help you try things. Work on your worst symptom first and get relief. Then, move onto your next worst symptom. Get plenty of rest and don't panic.

    Please let us know how you are doing.

    OK, just saw what you wrote about your doc. You need to get another doc ASAP. If you need relief from pain, see a pain specialist. Going on antidepressants is just a cop out from a doc who doesn't know what he's doing. Good luck.

    Love, Mikie
  10. jka

    jka New Member

    i went from bad to it was progressive for me.everybody gets hit by it in different ways.there are alot of different things to do to make yourself fell better.try to stay away fromstress,keep pre-made meals in your freezer(that was a life saver for me)ask for help when youneem it.get out in the fresh air when you can,don'tforce yourself to do things you aren't up will find natural things you can take-and meds from your doc.just take it easy and don't over do,

  11. RENA0909

    RENA0909 New Member

    Hi goo goo!!
    hope ur feeling better now. i feel like u when i walk up my own stairs!! my legs feel like ive just run a marathon and finished but my legs dont stop running even when i lie down on the bed as soon as i get to the top of the stairs.
    i also have all the pains all over my body that u describe so dont worry it will pass.
    soon i hope your pain will lessen cos ive felt just like you earlier on in this disease.
    take care
  12. leanonme

    leanonme New Member

    I feel all of that too, today I am so sore from peeling potatoes of all things and it hurts like crazy writing this tonight but i need some contact with people who understand how crazy it all is! I will be following several of these threads for some answer too, thanks to all of you who are taking the time to help us!