topic Re: Fibromyalgia Rheumatica in Wellness

Fibromyalgia Rheumatica

cddh — Sat, 02 Sep 2017 13:12:35 GMT

Anyone suffer fromt his annoying, sometimes debilitating ailment? I've had it for about 6 months now still on a regimen of steroids. I have always been active so this is mind boggling to me. I am tapering down from steroids but have to go back to larger doses at times. I wonder if I will ever be off prednisone andI am unsure as to what my fiuture will be re medications. Just wondering what others are doing and coping with the joint aches.

Re: Fibromyalgia Rheumatica

I am still oxox — Sat, 02 Sep 2017 13:19:57 GMT

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

Re: Fibromyalgia Rheumatica

violann — Sat, 02 Sep 2017 13:59:21 GMT

I was blessed for years after my retirement in which I felt as though I was in almost perfect remission, but some recent major life changes have thrown me back into a mess.

You have my total sympathy.

Re: Fibromyalgia Rheumatica

cddh — Sat, 02 Sep 2017 14:05:26 GMT

Actually, fibromyalgia rheumatica is what the doctor diagnosed me. It is not something that I made up. Yes, he mentioned gabapentian and I also know about steroids wrecking havoc on the body. That's why I am weaning now.

Re: Fibromyalgia Rheumatica

cddh — Sat, 02 Sep 2017 14:07:01 GMT

I was curious as to those who were in some state of remission. Discouraging to think that this is my life now!

Re: Fibromyalgia Rheumatica

hayseed00 — Sat, 02 Sep 2017 14:17:53 GMT

Hi, I can feel for you, I also have fibro and rhumatoid arthritis for the last 8 yrs or so. I try to remember when everything hurts that famous line "A body in motion stays in motion" and that isn't very easy somedays. I'm 63 and still going strong. Keep the faith girlie!!!!!

Re: Fibromyalgia Rheumatica

KathyM23 — Sat, 02 Sep 2017 14:22:40 GMT

@cddhI have suffered with fibro for years even back when there was controversary about whether the syndrome actually existed. There was a physician at that time who had this condition and wrote articles with the little information that was available at that time. He actually had Fibro and would say he could attest to the fact that it did exist. Can't believe how hard it was to get a diagnosis back then. The symptoms wax and wane, at times much less and other times very miserable. It is not just joint aches, but also muscle aches and spasms. Like you, I was very active before and couldn't believe how this affected my ability to do the everyday activities - pushing vacuum sweeper - absolutely not, simple things like that. Today at least there is information and some help by medications available. However, I am more afraid of the medications than I am of the discomfort I have been used to.

Stress does exerbate the symptoms, moderate exercise does help. I find the most help for me is my weekly chiropractic visit - keeps me going. This year has been particularly bad for me symptom wise - 4 major surgeries between me and my family. One for me, one for DH and two for animal (who is really family) The stress and worry of these and other issues have made this a painful year for me. I guess aging hasn't helped either. Getting arthritis on top of everythig else. Speak to your doctor about another medication rather than steroids. Since this is new to you, I am sure there are websites with a lot of helpful information you can search. It is still a mysterious condition, no actual known cause.

Re: Fibromyalgia Rheumatica

cddh — Sat, 02 Sep 2017 14:23:48 GMT

That's why I'm so confused as to why I was hit with these aches. I always exercised, was active, am active to this day. I am in my early 70's have total responsibility for maintaining a home, kid sit my two youngest grand children often, almost daily when no school. It is a curse. I don't want to be on steroids but that is the only relief I get so far. My doctor wanted to put me on gabapentin but never needing any medication and sensitive to some, I was leary. I think I will revisit that medication.

Re: Fibromyalgia Rheumatica

Yardlie — Sat, 02 Sep 2017 14:26:32 GMT

Hi Fibro Friends ... I was living a very active life in the mid-80's when I suddenly came down with fibro. It was so unheard of at the time that I had to see numerous specialists over a couple years before I received an actual diagnosis. Finally, a physical med and rehab doc moved into our city, and he diagnosed me. I struggled with it for 30 years...different medications, different doctors, different treatments. Nothing really helped that much. I even received Social Security Disability because of it.

Then about a year ago, I noticed that it just didn't seem like it was there anymore. Of course, by then I was having the normal occasional age-related aches and pains in my knees and lower back. I had been on Cymbalta for several years. I went to see a rheumatologist, and he said that I did not have fibromyalgia. A few months later, I had to see a physical med and rehab doc for something else, and he confirmed that I no longer had fibromyalgia. Neither knew if I was in remission or if it was just plain gone. I don't care, I feel great now!

I never heard of fibromyalgia rheumatica either. There is something called polymyalgia rheumatica that is often treated with steroids. Whatever...good luck to you in your hunt for satisfactory treatment and answers.

Re: Fibromyalgia Rheumatica

cddh — Sat, 02 Sep 2017 14:34:49 GMT

KathyM23 - Lightbulb moment! The only link I can think of between me and this affliction is stress! I'm not going into detail but started young being left to take care of and support 3 children, marrying for the second time to a person who would put me into a life of stress and hell fpr 28 yrs up to now! Not looking for advice re that. I cannot leave or couldn't leave because of finances but I believe my health suffered. That must be the reason for fibro to attach itself to me! I thought about a chiropractor and may look further into that if others find they get relief. I desperately want to get off steroids!

Re: Fibromyalgia Rheumatica

q-girl — Sat, 02 Sep 2017 15:18:28 GMT

@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. . .

Re: Fibromyalgia Rheumatica

cddh — Sat, 02 Sep 2017 17:01:23 GMT

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!

Re: Fibromyalgia Rheumatica

pdlinda — Sat, 02 Sep 2017 17:57:12 GMT

@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...

Re: Fibromyalgia Rheumatica

cddh — Sat, 02 Sep 2017 18:20:04 GMT

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.

Re: Fibromyalgia Rheumatica

chrystaltree — Sat, 02 Sep 2017 19:53:43 GMT

@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

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

Re: Fibromyalgia Rheumatica

meem120 — Sun, 03 Sep 2017 01:42:43 GMT

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.

Re: Fibromyalgia Rheumatica

deedeewar — Sun, 03 Sep 2017 09:59:43 GMT

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!!

Re: Fibromyalgia Rheumatica

cddh — Sun, 03 Sep 2017 14:03:06 GMT

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!

Re: Fibromyalgia Rheumatica

cddh — Sun, 03 Sep 2017 14:06:29 GMT

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!

Re: Fibromyalgia Rheumatica

cddh — Sun, 03 Sep 2017 14:11:55 GMT

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.