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Remission or flares???

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Fibromyalgia
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Posted 5/28/2012 7:29 PM (GMT 0)
Hello, I'm new here, searching and learning.  I have a friend who told me their fibro has been in remission for 2 years.  Does fibro go into remission?  And I've heard the term flares or flare ups, like possibly they have days where they're not in pain?  I don't know what it's like to not have pain.  For years and years now.  I just want to spend time w/ my family, going and doing things.  Anyway, I'd like to manage my pain, etc, w/ more natural modes, but idk if that's possible.  I don't want to hold my family back, so I teel them to go & do w/out me, but then I miss out.  This really stinks!  yes, I'm feeling sorry for myself.  There's so much I want to do.  shakehead
Meg
Posted 5/28/2012 7:56 PM (GMT 0)
Hi and welcome :) I'm no expert but I believe everyone is different to some extent with Fibro. For me, flares are the days I can barely move. I am never pain free. It's been so long since I was pain free it would probably scare me lol.
As to pain management, there are many things that can help besides or in addition to drugs. If you look in this section there's a post called Fibro 101 that has a lot of helpful advice.
I too miss out on a lot of things so I feel you there! It's really hard at times and it's ok to feel a bit sorry for yourself. Everyone does! I know I sometimes feel more than a bit sorry for myself lol There are a lot of good people on this forum who can help you, and who have no problem listening.
Posted 5/28/2012 8:02 PM (GMT 0)
Ty, Kaely!!! That makes sense to me as I've been in pain for so many years, I can't imagine being pain free either. I've been reading fibro 101 and there's just so much I don't know and so much to learn. And knowing that what works for one may not work for another is a bit frustrating - it may takes years or it may never happen that I find the plan that works - I may never be pain free is daunting. I showed my hubby the fibro 101 and the video. Learning whatever I can.... Thanks!
Meg
Posted 5/28/2012 8:31 PM (GMT 0)
It can get very frustrating indeed. I know a lot of people have gotten help through massage therapy, water therapy and acupuncture. But again everyone is different. If hubby is understanding that will help you a lot. you will have to figure out what works for you, but now you have a lot of people on here who can help. This group has already helped me rule out some thing. Like, I've tried a vegetarian diet and it didn't help. I found a post on here where several people have tried the same with no luck so you can pretty much rule that out as a cure for Fibro lol.
The best part is that now you have people who know how much it stinks to not be able to be pain free and do things.
Posted 5/29/2012 6:06 AM (GMT 0)
Meg- I have had days more now without pain and it is so wonderful! Now that my pain is under more control I can do more things with my family and friends. I am still a little nervous to get out there doing fun things because I use to remember the old days. I dont have them anymore. I do try to keep my teatment plan simple and as much natural as I can. I do take one med for pain. It's called subutex. It has been my mircle pill for me. It's made to be less addictive, but able to be as strong as morphine. It never messes with your head and it last up to 17 hrs in the blood. I dont have those breakthrough pains anymore. The other things I do are vitamin supplements, heat, light excercise, and stay away from stresses as much as I can. I see you are kind of new here. I was new here over a year ago and it was here where I got my life back. Try not to get discourage when some things are not working out. It does take some time to figure your own treatment plan. It's great you are reaching out for support because that is how I made it. Just keep staying on this site and trying new ideas and hopefully you will find your plan.
Posted 5/29/2012 12:42 PM (GMT 0)
A very few claim to be in remission with fibro but I wonder if they really had fibro to begin with.  It's very rare to hear this.  I've had fibro for 25 years and have never been in a remission.  But fibro does wax and wane.  You will have good days and not so good days and some horrible days.  The horrible ones are the flares.  For me it even hurts to breath.  

 

I do have good control of the pain.  I use mainly supplements and over the counter pain medication to help me be in control of the pain and fatigue.  Most of the time I'm doing good...still have pain but I'm so used to it that I don't even think about it anymore.  It's just a part of me...like an allergy, etc.  I've had a full and enjoyable life in spite of this illness.  Don't let fibro stop you from enjoying life.  Usually you can find ways to work around fibro to do the things you want to do.

 

Sherrine

Posted 5/29/2012 4:53 PM (GMT 0)
Hi Meg, In my experiance there is everyday pain and flare pain...after awhile the everyday pain becomes like background noise...you know it is there but because you live with it 24/7 you've learned to deal with it. It is the overall achiness pain. My flare pain is pain amplified to the max, what I always refer to as bone-crushing pain. I've never had pain go into a remission...but I do a pretty good job of distracting pain by doing things I love.

Flares come and go and can last a day or weeks. Overdoing, stress, weather or sometimes it seems for nio reason at all, a flare will happen. After trial and error we each have a routine that helps. Heat and muscle relaxers, meditation, deep breathing, gentle stretching helps. During flares, I need to move and cannot sit for long periods or I hurt all the more.

I still believe someday there will be something to help us all. I can't wait!!!

Hugs, Robin
Posted 5/29/2012 5:38 PM (GMT 0)
I doubt the remission thing. If you have fibro, you can control it to some extent, but it doesn't gointo remission.

My SOP is that I do Not stop doing things because of pain or feared pain. I make plans to enjoy life, and realize that I might have to stop early.

For instance, next sunday is the washington post hunt. Lots of walking, kind of a scavenger hunt. We plan to go. As I told the gent, "if I get tired, I can stop and you can retrieve me once you finish. There is always a bar or a cafe or something or other.". We plan to do a MS bikeride in September. He can do the 35 miler, I will do the 15 mile part, and then drink water and people watch. Never let the condition define you.

Be well.
Posted 5/29/2012 6:06 PM (GMT 0)
Myself, great examples of pacing yourself!  You are working around this illness and not missing a lot either.  A gentle pat on the back for yous!

 

Sherrine

Posted 5/29/2012 6:30 PM (GMT 0)
After 4 years I've finally figured out that I have to pace myself or I end up hurting right away and
the pain will last for anywhere from 1-7 days.

As Robin said the normal pain is just background noise, then there is the pain of overdoing.

Now I know I have to rest even before I feel tired. Yes, it is annoying to stop when I finally have
some energy and the sun is shining, but this is the new normal for me.

Do I still mess up? Of Course. Yesterday I went for a short walk with my DH and then he wanted to
go a little further up this steep hill and I agreed. Boy am I paying for that and he feels bad. But like
I told him, it's my responsibility to to honor and respect my body and my limits.


Sharon
Posted 5/31/2012 6:41 PM (GMT 0)
I can't thank y'all enough for your posts!!! You're all so very helpful!!! I was beginning to think I was losing it or something! The way I would do ok one day, then the next day(s) the pain be so bad that like Sherrine, it hurts to breath. I feel like my days are being wasted when I'm in so much pain and the sun is shining and there's so much I want to do. I feel really sad when after taking my kids to school, I spend the day trying to store up energy for when it's time to pick them back up and I need to be there for them, cook dinner, etc., I can.

For instance, I need to go pick up some groceries, but just brushing my hair, doing the driving & shopping, then make dinner... *sigh* I will do it, but I'd like to find some energy to do something fun! I love to scrapbook, but everything is just so hard anymore - everything. My hubby doesn't understand and wants to help, but doesn't know how (neither do I). I want to have more fun w/ my family, but I'm so exhausted all the time and hurt that I usually stay behind.

Myself 09, please keep posting - you are an inspiration!!!
Posted 5/31/2012 8:59 PM (GMT 0)
I agree with Sherrine. I may have a remission but at most it's been a day or two, and I still have pain even on the lesser pain days. I understand too about feeling like missing out. My family is going camping and I want to go but with the heat I know I can't hack it. Then I almost talk myself into it but just now I was on the floor to wrap a couple birthday presents and my daughter had to help me get up! So if I can barely handle the house I sure can't handle camping, but I will be happy that they are having the experience. I wouldn't want them to miss out becsuse of me.
Posted 6/2/2012 2:24 AM (GMT 0)
I fully believe in remission I have been there I had 2 years tottally pain free, did the Fibro come back yes. But it is now where as bad now as it was before. I lived on pain relief on massive doses you name it I took it we ver little relief.
Now I can cope with no pain perscription [just some days] I still have every thing that goes along with fibro.
For me I live in the belief that one day I will go back into remission and the pain etc will ease a little more again. I have had fibro for 20 years now.
But as my first specilist told me never give up that one day you will wake up and have no pain and be able to take back a little of the life you lost.
Kathy
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