Fibromyalgia pain: Let's connect

I have fibro for over 30 years. I have found that over the years there is no pain medication that helps with the pain. Exercise for me is the only thing that helps. You must move or it gets worse. When you get a flare, rest for a while,then start moving your body. Even if it means just talking a walk. I have been diagnosed many times. My Rummatogist has given me a low dose of flexeril at bedtime. It makes me sleep thru the night ,not wake up 15 times. My fibro has improved immensely .

Hello @nancirae,

Welcome to Connect; thank you so much for sharing your story.

I'm certain that @blindeyepug @johnbishop @contentandwell @lighhouseceliac @retiredteacher @minda77, and many other Connect members will agree that exercise can help us cope with many different conditions.
Your message reminded me of other conversations taking place on Mayo Clinic Connect, where members discuss what helps them take their mind off high levels of pain:

What Distracts You From the Pain? http://mayocl.in/2dzZdD9
Chronic Pain and Fibromyalgia - alternatives to medications? http://mayocl.in/2tj9CwL

We look forward to hearing more from you, @nancirae; is there any particular physical activity that you love, or that helps you find relief?

Hello @nancirae, I would also like to welcome you to Connect and thank you for sharing your story. I have pain with my polymyalgia rheumatica (PMR) and I'm currently tapering off of prednisone. You are so right about the exercise - it is very important to keep at it even if you don't feel like doing it. I've found that I have to do my exercise in the morning as soon as I get up to get me loosened up for the day. I try to make sure I do my exercise 4 to 5 days a week.

John

I do water aerobics in a pool 3 times a week. It takes the pressure off of my body and I am able to exercise much easier. I realized this is helping me to feel better.

Hi. I have Fibro, RA, Sjogren's, spinal stenosis, depression and now Lupus. I use Trazadone to help me sleep (just a half pill). I have a Thermapedic matress, which I think helps a bunch. I am on Cymbalta for my fibro and depression. I do water exercises three to four times a week. I do not use pain pills as I find you just end up needing more and more and it makes tbe pain seem worse wthout it. I find pain pills also make me feel more depressed. Massage therapy is helpful as is taking warm jetted baths. Do you have a pet so you do not feel so lonely? I try to play upbeat music, too. Meditation and Tia Chi or gentle Yoga can also be helpful. You kinda just have to try different things to see what works for you. Stay hydrated, keep away from alcohol and limit caffine intake. Learn to pace yourself and not over do. There wil be days when you just sleep or are quiet, but force yourself to move and limit those all day in bed or on the couch days as much as you can. If you don't have friends or family close, try volunteering one day a week to read to kids at your local library or spend an hour a week helping walk dogs at your local shelter. Is there a church you could attend? Church families are usually super helpful. Also, read as much as you can about your illness. Knowkedge is power and helps you not to feel so hopeless and helpless. You are in my prayers. Hang in there!

Thank you, KDubois, for taking the time to tell us about yourself and your experiences with medications. I am in a similar situation, but mine is due to losing a kidney in 1999. The drs thought it was cancer. It wasn't. It was a benign tumor (oncocytoma). My nephrologist has advised me not to take any NSaid drugs in order to save my one kidney.
Long story, short...
That leaves me with only being able to take Methadone the last few years. Its been the only one I can take that doesn't give me that drugged out feeling...it only seems to take the pain away some, never all the way because I refuse to take more than just enough to be able to function...get things done.
But you have given me an idea. I'm going to tell my doctor about the testing you had done.
Elizabeth (NE Texas)

Cymbalta. Fibro pain is brain pain signal issue. In the noggin.

New studies have found markers in the blood also, as well as blood-flow in Brain differences.

Hi @basslakeview, I apologize for the delay in responding... yup, pharmacogenomic testing truly saved my life. It's valuable information that truly helps figure out the best treatment options, and it can help you family members, too.

Sometimes if you're someone like me, it removes options from the table, but I'd rather not take a drug that will make me sick. (I've actually been offline for a little while because I was battling a cold/virus, and I can't take the good cold medicines due to my polymorphisms, so it takes me a little longer to recover.)

Please keep us posted regarding your progress!

Have tried these 2 medications and I have not gotten the response I hope for to relieve my chronic pain from fibro and spondylythosis, sciatica and degenerative disc in my neck and hip. I am a 53 year old woman and I have had very unfortunate results. My rheumatologists have had mixed ways of treating my pain and while I have tried for years to get a combination to work, they keep trying to switch me from this medicine to that.
Some of my concern is based on bad experiences with medications like SSRI's and the horrible withdrawls when they don't work to ease the pain. Even after months of use. The other is the long term effects some of these medications bring.
It's like the doctors read an article and think, " Oh, here's an alternative. Let's try this psychotropic and see how you do." After dealing with these types, who neither have a degree in psychology, nor adequate experience coping with chronic pain, I am at my wits end.
There's a lack of substantial understanding here about how these medications work and how they effect different people.
I don't suffer from depression, but I do have spells of anxiety from my pain when it is beyond my ability to cope.
Diazepam has worked when the pain is that great to both calm the anxiety and ease the pain. And I don't have to take it every day.
Tramadol helps me during the day to both ease the pain and fight the fatigue. Although some days the fatigue is too great even for that to be useful. At night I have used cyclobenzaprine and sertraline, which calms my pain enough to sleep. Although I never , ever feel rested. I wake every morning with pain and with fatigue. I try to walk every day. When I have a good day, I do some gardening and house chores. But when I stop, the symptoms persist.
Now the doctors are trying to switch me to cymbalta and are unwilling to continue the tramadol and the diazepam, which do help me get through. I don't always need to take these & I am sick of being treated like my pain is not real, or like I am misusing them.
Can someone write about how We who are dealing with chronic pain and the treatments are REALLY doing? Or is that just too much to expect? Doctors will read about the treatments and new developments, but do they read the case studies after use? Do they check on things like how the atudy subjects who continue suffer are coping.? my experience is, likely not.

Frustrating...thats what this is.

Staboo, TN