Wellness

[q-girl]

@cddh. . . . I was diagnosed with Fibro 9 yrs. ago. I also have chronic radiculopathy in both lower extremities and my dominant upper extremity. For the Fibro, I was started on Lyrica which worked for me, but I could not tolerate the side effects. I was switched to Savella which works just as well without the side effects. I was also on Celebrex, Topamax, and multiple narcotic pain medications for the radiculopathy. Despite that I was in pain from one thing or the other 24/7. I switched doctors in an effort t o find relief. The new doctor realized that narcotics were not effective for me. She enrolled me in the New Jersey Medical Marijuana Program. I was resistant at first, but it is the best thing I could have done. I takes it as a lozenge that dissolves under my tongue. Depending on the day, my pain (excluding night time nerve pain) has decreased by 85 - 95%. It doesn't help with numbness, but I'll take the pain relief. Even helps with stress and the IBS associated with Fibro. If it is legal in your state maybe you could discuss it with your doctor.

Hugs. . .

[cddh]

Yep, looking at my summary of a visit with ortho specialist.  It says Polymyalgia rheumatica!  I am gratified to hear of some going into remission.  I will wait til my tapering of steroids is over then revisit other meds with doctor.  I had to up to 3mg/day yesterday because of reoccurance of pain interferring with daily activities.  I will begin tapering down when pain has lessened alternating to 2mg/1mg daily then talk about alternatives.  I am anxious to be off steroids but know it has to be done gradually.  Thank you all for your responses.  You probably are as confused, as I am, as to why this burden chose us!  Always active, exercisers, hard-working, strong people who never thought stress would or could cause such damage.  Your hints of coping and getting relief are helpful.  Thanks!

[pdlinda]

@cddh I have a very similar story to yours...don't have the fibro but IBS condition that I deal with each and every day...depending on stress levels (family issues and other "ups and downs" that are part of life) my bathroom encounters increase or decrease.  I manage with digestive enzymes and other stress reducers recommended by my integrative med MD.  I'm OK, but not great...

[cddh]

Because I am not getting total relief, I searched out side effects and found out that the many I have could be caused by the steroids. I really don't have a lot of spare time; my plate is overflowing but I took the time to look up side effects. Chronic sleeplessness, while not sick, never feeling real well, occasional rapid heart rate, constant sour taste in mouth, light headedness (have to sleep sitting up), nausiousness. I am going to document more closely. I'm one of those people who grin and bear until it is unbearable! Not good, I know.

[chrystaltree]

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@I am still oxox wrote:

Fibromyalgia not Fibromyalgia Rheumatica, steroids help but they are horrible for your body. There are mnay other newer treatments out there like Lyrica and gabapentian

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      Lyrica and gabapentin are for PAIN,  steroids are for INFLAMMATION.  Totally different classes of medication that treat different symptoms.  

[meem120]

I had Polymyalgia Rheumatica. It does sort of burn itself out over the course of several years. I was told if you don't feel better on the steroids within a few days it's probably not PR.  

[deedeewar]

Kelo......oh Thank You soon much for starting this post.  I'm going thru doctors appointments right now and they are convinced now that this is my diagnosis..

I'm having a sever flair up to the point walking, is unbearable and resting too....

I do not what treatment my doc will suggest this week....but thanks to you and everyone for posting their experiences.......I'm not alone!!

[cddh]

deedewar - When first had debilitating pain, I thought I had bone cancer!  It was that bad.  My general  physician was testing me for lyme disease, etc.  I couldn't stand the pain, was using a cane around the house, clouldn't walk up stairs without using both rails as boosters, daily activities were very difficult, sleeping was impossible - had to hold onto my hips and lower body to turn if I wanted to shift in bed!  I finally took it upon myself to see an ortho specialist.  He diagnosed me in 5 minutes!  I was on a path to feeling better on prednisone after 24 hours.  I actually teared up in his office because of relief of the stress of thinking I had cancer!  My issue now is weaning off steroids and finding another path to recovetry.  I never went back to the initial degree of pain but occasionally have annoying difficulty bending or reaching or sleeping comfortably.  After this thread, I am anxious to talk to my ortho doctor about meds going forward.  My youngest grand child calls me a "modern grandmother"!  I want to stay that way!

[cddh]

Lizzylou1020 - That's my problem!  I almost immediatly feel relief after steroids.  It is worrisome to me about my body's dependency on them.  I was hesitant when my doctor wanted to put me on gabapenten but feel better hearing from others here that that is an alternative.  It is important to wean from steroids tho.  You just can't stop.  I'm almost at the point of 1mg day for a month!

[cddh]

Crystaltree - That's why I came here anxious to hear other's stories.  I didn't realize the difference between the two.  I love my doctor but he never explained the difference.  I did a lot of googling to be informed and have more information today than I did a few days ago.  Thanks everyone for your stories.  I never thought I would be one to have this ailment.  Thank God it is manageable with the proper treatment.