Skip to content
Has anyone ever experienced something like a remission?
avatar
HeatherHMK posted:
I was diagnosed with Fibromyalgia in 1999. For years I suffered with the pain and depression and always being so dang tired. Around 2006 I noticed my symptoms diminish and I was able to hold down a more active job. I felt GOOD. In the last six months my symptoms have returned. I hurt all the time and it's getting worse. I am afraid I will not be able to continue in my job. The sleeplessness, night sweats, aching has begun to really impact my life. I am always so tired now I can't seem to sit down without falling asleep.
Has anyone else experienced this type of improvement only to have all the symptoms return?
Reply
 
avatar
booch007 responded:
Yes this is a waxing and waning issue. I have had 1 good change in my life....woke up in NO pain and was trying then to repeat what I did to get there.....HA! can't be done.

I hope you can get yourself in allignment and return to something better....

Nancy B
 
avatar
franr responded:
Hi Heather Yes the symptoms can return after the a remission and they come on like gang busters.If you are on meds they may stop working.As Mimi says have your vitamin d checked.Check with Md you may need to have some blood work to rule/out anything else.I went through something similar this past winter for 8 weeks after a 20 year remission and had to adjust meds and life style.In the mean time try to pace,and give in to resting.This a great site for information and support and keep us posted. FranR
 
avatar
dollbug responded:
Hello Heather and welcome. MiMi in NC...I have read that sometimes this does happen to FMers. I have also read that as we get older, sometimes, the pain does get better....I am still waiting for this to take place with me. I have also read that most women normally get FM before 50 (I think this is right)...anyway....I did NOT fit the normal.

I was 54 and am now 60 (soon to be 61)....I am not holding my breath thinking though that as I get older things will get better....but I do hope this might be the case.

I know we have people here who is older than I am and they are still facing the wrath of the dragon each and every day.

I do hope you will check out the info here under *tips* and *resources* and be sure and review the *member toolbox* .

I would also encourage you to be sure and speak to your doctor about getting your Vitamin D level...which is so very important for a lot of people these days. Vitamin D and Vitamin B's are important.

You can find some good info here on them as well.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
avatar
missist replied to dollbug's response:
I was dx'd with fibro in 88 after having it about 3 years. For 14 years I had full blown fibro--with a lot of pain--I think the first 10 were the worst.
Then I had suddenly a remission of pain and a little more energy and it lasted several years. In that time I had jobs where I worked on my feet a great deal and although I was very tired after work--I was able to get up and get going daily.

A few years ago it came back. I first noticed a lot of little aches and pains, then I was dropping things and having trouble with my neck and my hands. currently I know I have something other than fibro --it seems to be carpal tunnel according to tests. I also have OA and deg. disc in my neck. My current pain area is my upper legs and lower back. I still don't have that 'all over pain' I used to have in the early years-so I 'm happy about that. I am able to control most of my pain, which is good--but it is due to some RX meds and I'm not sure how that will work long term. I'm having problems that may end up attributed to those--don't know.

anyhow remissions happen sometimes.
Mary
 
avatar
bette_kaffitz responded:
Heather,

As many of us can and will attest, fibromyalgia does change course over the years. I hope you had a blast during the good years. It's amazing how much you appreciate the absence of pain. That appreciation is unimaginable to those who have never dealt with unrelenting pain. But YOU experienced it.

And now your are experiencing a bad stretch. You have all the tools you need here to do the things YOU can do to reverse this trend.

If you do not have a good, understanding doctor who you can talk to and who will work with you, it is time to find one. This illness is so changeable and so different for each of us that it will take patience from both you and your doctor to find the right mix that will work for YOU at this stage of your life.

Speaking of life stages, is there any chance that you are in the throes of menopause? The night sweats and sleep disruption could be a symptom of "the change". There are definite hormonal links to fibro, so any change in your body's hormonal balance could be triggering your current problems with fibro.

I had terrible episodes of fainting a few years into puberty. They returned at perimenopause. Believe me, I was tested for everything. At least the most recent ones replaced the spinal tap (checking for M.S.) with an M.R.I. Full blown fibro appeared at the end of my second pregnancy--another time of hormonal swings. That was 40 years ago. There have been bad days and good days. There have even been a few bad years. But, DO YOUR HOMEWORK. Find out ways to make each day just a little bit better--despite fibromyalgia.

Bette
 
avatar
Melas replied to bette_kaffitz's response:
Oh poo, I just wrote a whole response and think I deleted it. Ok, here's a more condensed version. I'm the newbie with FM. Still have trouble digesting that it's FM because I can't see it on a test. All tests that have been done are normal, including Vit D. Went on Lyrica and had bad reaction, now starting Prednisone, since a foot cortisone relieved all pain and allowed me to do 100m bike ride.

And for the menopause, I saw a correlation to that, coincidence??? not sure yet. Fatigue and pain started 4 yrs ago for two week out of the year. This year it came on full time. Really puts a damper on my exercise.

I also have history of a mitochondrial syndrome that my son passed away from. Seeing a specialist in ATL for this shortly to see where my MTDNA mutation may play a role in this. Possible ATP malfunction?

So trial and error for sure. Did a 4 mile walk after work today and that felt good from mile 2-4. Then hit the electric blanket, who is now my BFF:)

I really don't get any fatigue anymore (knock on wood), soooo, well...I'll just keep digging for answers until I'm either convinced or something else is found. Ohhh, interesting note, thyroid was checked when it came on stronger this year and in range, now it's more severe, had it checked again, and it shows overactive thyroid now. Having it rechecked.

Sorry for the long note, but it makes for good bathroom reading:)
 
avatar
HeatherHMK replied to bette_kaffitz's response:
Hi Bette,
Well this took me by surprise. I had thought that I was misdiagnosed by 2008 when I had had a couple of years of no pain and symptoms. The VA diagnosed me with FM after six years of trying to figure out what was wrong with me. It was a relief when I finally found out what was wrong but that was short lived.
I took a physically demanding job that evolved into another position more physically demanding. I had gone to the gym and lost almost 30lbs and I was on top of the world! I went to a concert with my daughter three years ago and got pushed around a little and hyper extended my biceps and ever since then it had felt like the meat is being torn from the bones whenever I have to reach or stretch. Over the course of the last year things have just been going downhill. For the last six months or more my neck and shoulders have hurt all the time. I attributed it to my continual sinus infection and allergies. I have bad reactions and end up in the hospital several times a year from them. The last four months or so my hips have been hurting as well. I thought it was from weight gain and sleeping on my sides. My hands have begun to hurt so much in the last month I think I am getting arthritis, and they go numb as well. My boyfriend doesn't understand what's going on with me but he does understand the pain since he has his own issues with arthritis and years of the physical abuse our job dishes out.
I have not had insurance since I got divorced and my only medical care is through the VA (for which I am grateful I have that much) I am afraid since this is happening again I am going to lose my job and not be able to support myself. Kinda freaking out here. As for the change I had a hysterectomy 13 years ago when I was 32. I had pretty much gone through the change after that.
I get up each day dreading having to don my work gear and fight to stay awake all night during my shift but I press on. I still bowl and fish and try to do the things that make life fun. It has just gotten so much harder and sometimes scarier over the last year. I am so grateful my boyfriend is supportive if not understanding. He really tries to make things easier for me even if he doesn't know what is wrong.
I am making a list of things to address with my LNP at the end of next month. I am really afraid. Some friends have suggested I apply for disability but I am too young to not work to support myself. I would feel very badly if I had to quit working. Yup Definitely freaking out here.
 
avatar
HeatherHMK replied to dollbug's response:
Thank You MiMi.


Helpful Tips

For All our new members
Welcome all new members, I want you to understand how important it is to be o.k. with coming here to lift your spirits and release ... More
Was this Helpful?
374 of 401 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.