Discussion in 'Fibromyalgia Main Forum' started by clementyne, Aug 19, 2010.

  1. clementyne

    clementyne New Member

    Just wondering if any of you have experienced a time of remission in your battle against FM. I have been told that I will have times when FM will appear to have disappeared ( wouldn't that be wonderful) but in the last 8 yrs I have not had 1 day without pain. Is this a myth?
  2. AuntTammie

    AuntTammie New Member

    some do have this 6 yrs, it has not happened for me - have just gotten worse & worse.....I do also have CFS and several otehr diagnoses, though
  3. Skyemberr

    Skyemberr New Member

    I had a short remission during pregnancy. A lot of my pain stopped. I still had some of my other problems. I had my baby 7 weeks ago and now the FM is coming back. :(
  4. ellikers

    ellikers New Member

    Yep I have! Lots actually. First I had mostly CFIDS symptoms (started back in 2005), mostly eased by beginning of 2007, little bouts of pain that came and went, then slammed me back in November (when I was dealing with a LOT of emotional and physical stress, it was cold out, I wasn't regularly exercising, had gone of meds etc).

    NOW after a bad flare in early June ... and thanks to really good physical therapy that stabalized my core muscles and the way my body muscles function ... and started walking very regularly ....

    I'm doing really well, back to biking, starting to run regularly for the first time in my life, I can hike 4-7 miles. I still have muscles (esp my abs around my hiatal hernia) that get tight, but I stretch, take some medication and get rest and it hasn't gotten worse.

    I have to do a lot of things to take care of my mental, emotional and physical health all the time to achieve this (and went back on an anti-depressant that worked before when I had CFIDS) but I'm super happy to be feeling this good.

    The pain psychologist I started seeing in July is awesome and hands me things to read before my next session and it has lots of good information and I feel like everyone here would find helpful ... about pacing activities, starting out slow and gently in a special way to gradually increase activity levels, finding ways to deeply relax, etc.
  5. hollie9

    hollie9 New Member

    Although I have gotten better since first coming down with this illness about 15 years ago, I don't consider that a remission. I still have to pace, don't have the energy of a normal person.

    About 6 years ago I began injecting the real Human Growth Hormone, it was extremely expensive. I became truly normal after many of these injections. That lasted about a month, then I began having CFS symptoms again even though I was still injecting the same amount of HGH.

    I have gotten a lot better from yoga and strength training. It seems the more muscle I have, the easier it is to do things. did you do all that aerobic exercise? I just went out walking, hoping to spend an hour and had to drag myself back after only 40 minutes, very depressing. I guess just slowly building up to it can be done with aerobic/cardio as well as strength training?

  6. karynwolfe

    karynwolfe New Member

    I've had a remission of both M.E. and FM; the M.E. came back but the FM is still gone. It does happen.
  7. ellikers

    ellikers New Member

    In short: I started gradually and worked my way up slowly.

    In long ;) ...

    In chapter 1 of my illness (2005-2006) I had CFIDS/CFS and had WAY more of a problem with post-exertional fatigue ... I started swimming in a pool then, and "swimming" was treading water for a couple of minutes, then going and sitting in the hot tub. Slowly and gently (to guard against flares) I increased how active I was, doing a couple more minutes, swimming laps super slow, etc. I would also go on walks based on how I was feeling, the water work felt more supportive to my body though.

    Through chapter 2 (in the last year nov 2009-now, with some lingering issues between 2007 and 2009) I've had more fibro and chronic myofascial pain syndrome symptoms, and less poste-exertional fatigue ... my main problem was pain WHILE trying to do anything. So on and off from Jan to June of this year (2010) I tried hiking, swimming, going on walks, etc with mixed results ... sometimes I was okay and I could handle it, most of the time I was in pain (hips, pelvis, legs, back, etc) and then avoided being active (which I then learned that at my level, that wasn't good for me).

    In June, after getting diagnosed and starting to manage this fibro/CMP thing, I started walking around the neighborhood regardless of the pain in my hips that was the level I knew was in the moment but my body wasn't telling me that I was seriously injuring something. I tried to make sure I walked everyday, even a little, and slowly increased the amounts until this August I had enough physical therapy that worked my body back into having muscles function properly (hips, pelvis, core all stabilized and strengthened) and I got the "all clear" from my PT that I could try adding biking and running VERY SLOWLY AND CAREFULLY. So I started out just walking, then would run for a minute or so, walk, then run another minute or so, until I got to the point where I have run for 13 minutes straight through and this week ran over 2.5 miles straight without stopping (I've never been a "runner" in my whole life, so this is shocking to me).

    I credit this to amazing practitioners helping me out, my keeping up with PT, stretching and doing home work for PT, yoga, walking and hiking regularly to keep my body moving, meds, my diet, my amazing social and emotional support of my parents and friends, being youngish (27) and having "caught" my body issues relatively early on compared to folks who have been sick and in pain for decades. And I'm really determined (and freaking stubborn). Running feels good for me now that my hips and everything are worked out and I know how to stretch and use trigger point release if they start to be grumpy.

    I've read and worked with two books on managing pain that have GREAT advice on pacing and increasing activities gradually (more gradually than me for most people).

    That was SUPER long winded, sorry for the length, I really like to be thorough.
  8. ellikers

    ellikers New Member

    Sorry to hear about your knee! That sucks! I bet your worse FM pain is due to less activity ... it's that obnoxious reality of "use it or lose it".

    Definitely sending you support! Taking care of an injury is so super important and in the long run your body will be better for it.

    I'm learning more and more about the pain cycle and how all this stuff works (even going to a conference on it next month, up and coming research on chronic pain and how it works in our brains, etc) ... getting my nerd on!
  9. TigerLilea

    TigerLilea Active Member

    Hi Kina - Did you ever find out what was wrong with your knee? or does it remain another one of those medical mysteries?
  10. jb10719

    jb10719 Member

    I've been in remission for the last year. I've been off all meds since January 2010. I used to be on lyrica, savella, motrin, ultram, valium, percoset, celexa, bentyl, atarax, and prilosec.

    I started riding a recumbent bike in october 2009. I started out with 5 minutes at a time and worked my way up to 30 minutes. I try to do it everyday, minus the weekends. I couldn't believe the difference it has made.

    I'm currently 15 weeks pregnant and still without pain. I haven't been able to work out as much as I had been due to morning sickness, but so far haven't had a relapse.

    I'm not saying that this would work for everyone, and I had a very hard time at first hearing that exercise would actually help. I felt like how could I exercise when I'm in such incredible pain, but starting out small and working up has really helped to keep my muscles stretched out and loosened up. I thought I was going to be in a lot more pain after exercising, but I found the opposite to be true. I actually found that I had more energy, too.

    I wish you luck and hope you find something that works for you.
    [This Message was Edited on 09/29/2010]
  11. bengough

    bengough New Member

    The only time I get better is when I get a viral infection like the flu. When I do, something about the infection cuts the pain level by 50 to 75% for a couple of days. After that, the remission is gone until the next bout of something viral. Doctors don't know why and don't seem to care.