Fibromyalgia Experts Needed

Hi Audrey,

 

I have Fibro.  It sucks. I have a lot of pain with fibro.  It's a tough disorder to have along with lupus.  The best thing to know is that fibro can't hurt you.  It's purely a heightened pain disorder.  Another thing to know, is if you take prednisone for your lupus, the prednisone can make the fibro worse.  Fibro and prednisone don't like each other.  Finding that balance that keeps your lupus quiet and your fibro quiet can be difficult.  I have a hard time with it.  If you're not on prednisone, halleluia!! Hehe.....

 

Having RA and fibro will likely give you additional pain issues.  If you push or poke your upper arms, thighs, chest, ribs, shoulders, does it really hurt?  Almost like a bruise feeling?  If so, that's fibromyalgia.  You'll also have more fatigue and brain fog to deal with.  Unfortunately, lupus and fibro mimick each other really well.  I sometimes have trouble knowing what is flaring.  So knowing your body and being able to tell the signs of a flare early, will help you stay well.

 

I take 20mg of Amitriptyline to help me sleep.  Sleep is an issue with fibro as well.  If you're not sleeping well, it's probably the fibro.

 

Heat is very helpful in dealing with any pain.  Nice warm baths are heaven!  Fibro is a difficult disorder.  I'm battling it really hard right now.  It's in my feet.  I can hardly walk the pain is so bad.  This is a new place for my fibro to attack.  I'm not very happy....  So keep in close contact with your rheumy.  there is another medication called Lyrica that is supposed to be helpful for many people.  I haven't tried it, but with this foot pain I have, I might!

 

Just know that fibro can not hurt you.  It can make you mental trying to manage the pain and other symptoms, but it can't damage any organs or anything. I hope this helps Audrey.  I'm always here if you have questions okay.  (((gentle hugs)))

Ginny 

Thanks so much Ginny and Babs! Your information is VERY helpful. I can certainly see where the "heightened pain" comes into play for me. I feel it in my hands, arms, and fingertips right now. I do take 6-7 mg of prednisone but I am trying to taper down - without much success, though. I have been dealing with pain in my feet, too, for almost a year now. The soles of my feet, to be specific. Does this sound right? I absolutely love the releif that warmth provides. Maybe that is why I won't sleep without my heated mattress pad. I also cannot handle driving without heated seats - I feel like such a baby (a very spoiled baby) about this. Warm baths and the hot tub are heaven!

I currently take a very strong pain reliever (due to my frequent kidney stones), methadone, and this helps me very much. If I try to go without it, I end up constricting all my muscles and walk kind of hunchbacked. I also get very impatient and rather grumpy if I cannot get to a comfortable position (like laying out in a lounge chair or in bed with pillows propped) due to normal life situations like standing in line at the grocery or if someone stops me to ask a question. It is very weird and annoying to say the least. If I am having kidney stone problems, it doesn't bother me to take the pain medicine. about ten years ago, I took amitryptilene for pain management and I slept really well but I was tired all the time at work because I could not sleep long enough.

Thanks for your help and words of encouragement. I know that I will be fine. My rhuemy is great and she mentioned Lyrica the last two times I visited her. Who knows, I might add yet another script to my medicine plan. Yikes, do you ever feel like you could almost be a pharmicist? Or a drug store?

Hi Audrey

 

Yes Ginny, gave you great info. It has been over 12 years since I was told I had Fibro. I have got over a year with every day, every day feeling like a Semi had run over me. I hated taking something for pain so I wouldn’t do it all the time but did start with the amitriptyline and it was a God send. It may have been about 6 weeks but I still remember the first day when I realized that I wasn’t in pain. I know when I don’t get my sleep that the pain will come back. 

 

Take care Oldhippyrebel

Hi.  I also have fibro.  It's not easy dealing with Fibro and lupus.  I have a lot of joint pain and muscle pain and most days the energy level isn't there.  I have learned to take one day at a time and try not to plan too much ahead of time ( as we don't know how we are going to feel later).  The best thing that has worked for me is Walking in a pool that is 100 degrees and then hitting the hot tubs afterwards.  The hard part is dragging myself to the pool.  I tried Lyrica.  It works for some people but didn't work for me.  I thought it helped at first as I did see a raise in my energy level.  However, after a while it just stopped working.  I gained 35 lbs for it.  One of the side effects of Lyrica is weight gain.  I hope you find something that works for you!  I'm always reading these threads and find it extremely helpful!

I was on Lyrica for years but last year my insurance said I needed to change because Lyrica cost to much. I know it cost and more than likely I would have had to stop on my own because of cost but I just didn't like that the insurance could do that. The Dr. put me on Gabapentin.