remission

[texasgirl150]

hello. I was diagnosed with fibromyalgia at the beginning of this year. I am on 150mg of lyrica per day. It somewhat controls the pain, but only at about 60%. I have read on various sites that fibromyalgia has periods of remission. I have yet to experience this. I might have a better than average day per week, but that is about it. Do any of you experience periods of remission and for how long?  I have been in a constant flare up for about a year now. I can look back over the years and see when i started to have some of the problems that i have now, and those symptoms started when i was about 25 and pregnant with my first son. Now it is just a never ended pain party and i am sick of it! I am only 33 and hate it that i feel like this all the time. I continue to work, but when i get home, i feel useless. I am lucky that my husband takes charge of the house, cooking and cleaning. He does all the grocery shopping, as i just about have a breakdown trying to navigate through the store...i can do it, but it takes me twice as long as it would if he went. my arms, elbows and hands are affected the most. I am a legal assistant, so after typing and writing all day, my hands, arms and elbows feel like they are literally on FIRE!

i guess my worry is that i do not have these periods. years ago, yes i think i had them, but not now. does this mean i have past that point and will never have pain free days or does mean i have something else?

i appreciate your thoughts and advice,
thanks!

[paulsy]

Hiam paula my friends call me paulsy i have had fybro for over 25yrs it has slowly gotten worse over years i am on lyrica 150mg a day also a 10mg pain patch i also have hashimotos disease on thyroxine  100mm a day i take a sedative ar night Kalma doest work all night my pain out of control  on an anti depressive but i am getting to point i cant take pain anymore want to cry all day i am sick of pain  anyone know anything that can help tried all exercise swimmimg ect just leaves me shattered i also have irritable bowel

[vintagechicken]

When I think of Remission... I don't really think we ever get completely better or feel cured?  Ya' know?

I think we all still have issues that we suffer with, but our general overall well being tends to improve.  For me personally, I fall out of remission about once every six months or so.  I've also noticed that I have triggers for this .... such as a poor diet or eating too many processed foods, and little to no exercise.  And when I do fall.... I fall hard! LOL  It's like I'm back at square one with the pain and the fatigue and all of the other symptoms.  Never ending vicious cycle!

[texasgirl150]

They discovered that I have sleep apnea, so I started using am cpap at night. I have only been using it for about 2 weeks and am still trying to get used to it. My hope is that it will help all aspects of my problems. I'll talk to the 'dr about testing for other issues. He did a lot of blood work at the first of the year, MRI, nerve
Conduction and EEG testing, all of which came back ok.  I am just really frustrated. What are the symptoms of lupus? I guess I just do not really
Think it is fibro. People tall about touch hurting them, and I do not have that. Surface pain is not an issue for me. It is deep, internal burning! The only symptoms that is on both sides is the
Arms hands and elbows. Everything is one sided.

[geminigirl1963]

I received my "official diagnosis" of fibro about 12 years ago, however, my doctors felt that I more than likely had it for many years prior to that based on medical history/symptoms, etc.  Of course, back then, it was not as widely known about as it is now.

I can quite honestly say that I have NEVER experienced a "remission".  Like you, I may have a day or two here and there that are better than other days, but I ALWAYS suffer from the symptoms (pain, for me, is the worst symptom, followed closely by fatigue which isn't helped by not being able to sleep because of the pain!).

It is somewhat common to have other auto immune processes going on along with fibro.  Have you been tested for lupus or RA?  If you haven't, you may want to ask your doctor to test you, just to make sure you're not missing anything.  I also have lupus, which only adds to the pain I experience from the fibro - however, the lupus was not discovered until 2005.  Be aware, too, that it's also quite common to get false negative results from the lupus ANA test several times.  In my case, they tested me either 3-4 times (I can't quite remember exactly) before my ANA came back positive.  So, unfortunately, you cannot always say 100% if you receive a negative ANA at first that you don't still have lupus.  In my case, the problems I was having at the time are 99.5% of the time either caused by a form of cancer or by lupus - and fortunately, all my tests for the cancer had come back negative, so my doctor pursued the lupus testing knowing that it does sometimes take several tests.

I, too, was on Lyrica for a couple of years, however, I began having some really bad side effects from it so I had to stop taking it.  It had helped somewhat with the pain, but along with the side effects I was experiencing, it had also pretty much stopped working for me.

If you're not already on something to help you sleep, you may want to ask yoru doctor about that.  Most fibro patients do experience great difficulty sleeping and many need prescription sleep aids.  I take Ambien.  it's a vicious cycle with the sleep thing - we can't sleep because we are hurting, and we are hurting more because we're not getting the sleep that we need.  I definitey do notice a difference in my pain levels on days when I've had an especially hard time sleeping the night before.  Even with the Ambien, I still only average about 5 hours of sleep a night, but it's definitely much better than what I was averaging before the Ambien!

Best of luck - if you have any other questions or just want to talk, please let me know.