Does anyone have Fibromyalgia?

I have fibro too.  Hello Jo and Barbe (I've been MIA for a while but I'm back).  I was also recently diagnosed with moderate to severe sleep apnea and I swear that it is linked to the fibro.  If your muscles aren't resting then I don't know how they can feel normal.  Anyway, I take cymbalta 60 mg and it has helped, however since starting Arimidex I'm in pain again but mostly joint not muscle as much.  I really hope you don't have fibro and it's something that is going to go away because fibro is awful, especially when you are in a flare.

I have to stay under the radar for "driving under the influence" with my drugs. Years ago I was on the narcotic equivalent of 25 Percocets a day! Found out afterwards that I could have been charged in an accident! Yikes! (Should have known when I had to have DH drive me to work for the first week because I was too "dizzy". Doi!)

I took Lyrica for 5 months while I was on a no-carb diet. I didn't lose an ounce; my brother lost 75 pounds. I truly believe if I wasn't dieting at the time I would have gained weight! Now the ads do say "weight gain possible". I can't afford extra weight (or pain for that matter) with my high blood pressure....8-)

Jo, I've been on Cymbalta for about 3 years now.  I was on Effexor xr before but was switched to Cymbalta because it is supposed to work better.  It has helped.  I just got back from the sleep specialist and he said that I have not only moderate to severe sleep apnea but I have restless leg syndrome.  He told me that Cymbalta caused restless leg syndrome but I remember that I had it before I even started on antidepressants.  Anyway, now I have to go on Mirapax for the RSL.  I wish I could stop the Cymbalta but I'm afraid that the depression and the pain will come back. I tried to stop when I was on Effexor but I started with the depression again.  That was several years ago.  I can't even imagine how much depression I would be in now with all that is going on with my health.  Anyway, I now awaiting my cpap machine (needed to help stop sleep apnea) and I have to go for an emg on my legs to see if I have some kind of nerve problem.  Also, as an added bonus, a very rare side effect of the Mirapex is that start shoplifting, compulsive gambling and/or sexual addiction (which wouldn't be a bad problem for my hubby since I'm on lupron shots and take arimidex which has killed my sex drive).  Can't wait to start with the Mirapax!  I'll let you know how it goes.  Email me a list of what you want at the store and I'll steal it for you (only kidding!!!).

BTW, I forgot to add that I did not gain weight on the cymbalta.  I don't think it is a side effect.  I definitely know that Lyrica does (finally they are admitting it).  I am 10 lbs heavier than this time last year but that is because of the chemo.  Has anyone tried MSM.  I thought it helped a little bit and it is easy to get (CVS has it). 

I knew you were going to ask that!  Ok, here is a link to a site that explains it.  It says it's for joints but I take it for muscles and it helps a little.

 http://www.msmguide.com/

I've been taking Advils but had to stop because it gave me mouth sores. Does anybody know what causes fibromyalgia?

You're right. I need a clear-cut diagnosis. It seems related to my thyroid status-- when thyroid is better I don't feel the pain nearly as much.

I never had Neulasta and don't use hormone blockers. The pain just creeped up on me.

There is some kind of fibromyalgia organization out there, tho there are probably several I should investigate. I haven't taken this fibro business seriously til this winter. All I see is stupid drugs on TV advertised trying to cover the symptoms without ever identifying where the pain originated. I'm not opposed to taking pain killers-- but I would like to know why I got the freakin pain in the first place.

Thanks! I will look into the Chronic Fatigue books. Maybe there is a viral connection. Still want to know how the thyroid fits in to all this.

Maybe a little late for this but... i've had fibro for 5 years (pre BC) and have found it highly managable with lifestyle changes. It's a lot of change- diet, chemical exposure, exercise- but I feel it's the only thing that really works. For flare ups I occasionally take oxycodone but mostly use lidoderm patches which i totally recommend. they aren't the strongest but they do help and are totally benign side-effect wise.

 I was very worried that chemo would destroy me b/c of this but with a lot of supplements and such I have done pretty well- alsmost to the end of it (3 more taxotere) and so far....knock on wood...pretty good.

I will say to though that joint muscle pain are associated with- neulasta. aromatase inhibitors. SERMS. and many chemo drugs. So it could really just be a side effect yeah?

good luck....anandi

Hi, I have fibromyalgia and have been taking Lyrica. It was doing a good job until they put me on 2 heart meds and Coumadin right now for low ejection fraction from the chemo. I really hope I don't need to be on them for the rest of my life as between the heart meds and the tamoxifen I started the fibromyalgia is flaring up. For me anyway, it has been more difficult to handle the pain and headaches from the fibromyalgia than going through the chemo and rads, etc.

I tried Cymbalta also but I was going through rads at the time, had headaches, so not sure if Cymbalta caused them or if the rads flared up the fibro headaches.

I have had fibromyalgia for over 21 years.  I did acupuncture, and manipulative massages which worked well.  My fibromyalgia is a secondary condition from arthritis (15 surgeries) with RSD,and an unknown connective tissue disease.  I have been treated at Cleveland Clinic and Stanford and UCSF, all medications did nothing for the tender points and pain.  Only thing that helped was manipulative massage.  Then I had a horrible flair after a shoulder surgery, and my doctor said we want to try Lyrica.  It worked wonders for me and helps with the nerve pain after surgery and mastectomy.  However, I gained weight on it. I must say I've done the gambit of treatments even paraffin wax poured on arms and legs, tens machines,  Neurontin did nothing for me and I was on over 4000mg a day before doctors said this isn't working. They put me on Baclofen, which helped but caused severe reflex and burned my whole digestive tract.  My Enbrel injections and Lyrica have given me full movement and no pain.  I can't believe that after all these years something worked so well.  I take no pain medications at all.  I do have flair ups and got lymphedema after lymph surgeries and fibromyalgia set in big time like someone said I couldn't even stand anything on my skin, I have a burn apparatus for my bed when it gets that bad.  I never got results from any pain medication they just made me mentally out of it and did nothing for the nerve pain. Plus I got allergic reactions from most of them.  I hope this helps you in any way.  To all you ladies I can say I understand your pain, for most people just don't get it.

I am now doing okay on the tamoxifen after being on it now about 2-1/2 months with fibro. I did add a calcium/mag/zinc combination a few weeks ago that I take 3 times a day and I have been doing better. Don't give up yet on the tamoxifen.

MAGOB -Yes I did have some side effects at first, much more intense hot flashes that seem to be better but I am exercising quite a bit and taking Effexor now also. Also I did have more joint pains for the first few weeks. Diagnosis: 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+