Yes, I have heard of using a steroid but IMHO this is not a good idea. Steroids depress the immune system. Not something that should be used indiscriminately. I don't feel that this is an appropriate treatment for FMS. You'll have to decide what you want to do.

Unfortunately, it is now extremely difficult to obtain opioids. There is strict government oversight in place. Doctors are afraid of losing their license so they will not write these scripts any more. You might want to consider looking for a pain management specialist to see if they are more open.

I'm not a big fan of your Rheumys thought process. I'd be looking for someone else. Maybe a Neuro and as I said, pain management. I hope that my comments are helpful.

I disagree. A short course of steroids doesn't cause the side effects of long term use, but it is a good way of seeing if it is inflammatory or not. After the doctors find that your pain is significantly reduced by steroids, there are other, less dangerous drugs to use longer term. Also, if you do respond to steroids, there can be a hold over effect. You still feel better after you stop.

Definitely worth a try.

A short course of steroids will help a little but it's not going to do much but reduce any incidental inflammation (which does happen with FM, because our muscles "live" at the state of "stressed" that most people get from a workout, only we wake up that way.)

Also, taking painkillers doesn't lead to addiction. I know many people who were given hard core pain meds, and went off them fine, no addiction to anything afterwards, but the new "party line" is that "opiates make people into addicts". In fact, booze can. So can nicotine. Chocolate. Take your pick. All those are legal and purchased OTC, but hey, opiates were in a few celebrity deaths, now it's important... *eyeroll*

Meanwhile, short of surgery, no, they're not going to deliver on pain meds. I hit a 9/10 pain day and I'm effed as well.

I agree on finding a different doc if you can, and maybe hand your rheumy "Fibormyalgia for Dummies" Or Addiction for Dummies. He's certainly giving a good impression of ignorance on both topics.

Gentle hugs. (Oh, and FM being auto-immune? That "rumor" has been around over a decade. *eyeroll* It's neuromuscular by the latest definitions released by NIH, CDC, WHO, etc., so he might want to check on that.)

I don't like pain killers because they only mask the pain, but don't target what causes the pain. Aside from the burning pain from fibro, the muscle tightness is what I live with. At one point it was so bad that my rheumy prescribed a six-day course of prednisone just to break the cycle. Two days into it, I felt great! I had a total of three wonderful days free of awful muscle tightness and pain. It did help, but I wouldn't do it again except in an extreme case where I was practically unable to move without excruciating pain. She only does it when nothing else is working, and just to break that escalating pain cycle.
I don't believe fibro is an inflammatory disease, but rather a byproduct stress cycle caused by pain. I'm not speaking with any medical authority, but only from my own experience. Besides, many fibro sufferers also have other medical issues going on, so it's a crap-shoot of treatment at best - trial and error.

I live in some middle ground where doctors go back and forth between autoimmune and fibro. When I had a course of steroids I was dancing on the table tops. When I take the drugs for lupus (which is the autoimmune disease my thing most resembles), I get better. But despite this, the last time I was in the rhumies office she was talking to me about fibro and this "depression" they think I have. Some people may have pure fibro that has nothing to do with inflammation and other people have an inflammatory illness that is difficult to diagnose. So I have become a great fan of trials with medicine as the way to get to the bottom of things. A lot of fibro is a misdiagnosed inflammatory illness. Blood tests may look perfectly normal, but you may respond to meds like someone with autoimmune disease. A prednisone trial is a good way to clarify thing in a muddled sort of way. Sometime I wonder if doctors know anything.

Madeline, if you do respond to steroids, if you are seeing a rhummy, you could ask for a trial with plaquinil, which is quite safe for a drug. It put me into something very close to remission. You have to be on it for awhile to know if it's helping, but it changed my life.

Your doc's thinking is about 20 years off. Unless you do have an autoimmune disease.

Do you have a compassionate primary care doc or can you find one (or try the Univ of Hawaii MDs clinical professors).

Primary care docs usually take care of fibro patients once theyre diagnosed. Ask around for someone who is a very caring doc.

Hope you get what you need. Personally, I use a very tiny dose of methadone plus a muscle relaxant on a daily basis and there is no escalation of dose with the methadone needed. No "addiction."

Shakota--

I think doctors are going backwards and becoming overly dependent on blood tests. The doctors who are "20 years out of date" maybe the best doctors, IMO. I feel when it comes to fibro and autoimmune diseases there is a lot of confusion among doctors themselves.

A rheumy did a prednisone trial a couple of years ago--I don't think there is an harm in finding out "in real life" what helps you. Anyway, it has worked for me.

Thanks, everyone.
Yeah his comment about the pain killers totally caught me off guard. I don't think I've ever heard him say anything like that before. I don't know if they are just cracking down on opioids is the reason?

I'm afraid of looking for another rheumy because I went through many of them before him that were crack pots. We couldn't get along, they were forcing me to take medications I didn't want or had bad side effects (back when the new fibro meds came out like cymbalta, lyrica, etc). But now that I know better, whenever a doc tries to prescribe me a med I don't like or agree with I simply don't take it.

This doc is one of the top rated docs on the island. So if he's the best, does that mean if I look for a different one I'll be getting a crappy doc? The other problem is I have VA (veterans) healthcare. The specialists you can see under the VA healthcare is very limited. I might be stuck with this guy.

I'm thinking I will try the steroid... and if it helps, like AnnNY said, maybe I will ask him about plaquinil. Next follow up in 1st week of Feb. Hopefully by then I will be feeling much better, though...

Leo, that's sounds awful. Sorry you went through that. So we're pretty much supposed to suck it up? I am offended that we now have to be treated like drug addicts!

I'm also thinking about going to my primary care to ask about pain killers.... she told me a couple of months ago to see her if I thought my pain was too much and may need a little to get me by. I'm hoping she means that.... but I did send a message to her about it and didn't get a reply. Hmm.....

AnnNY, thank you for the suggestion. I'm seeing a new rheumy in January, and will mention it to him. It can't hurt to try something that helps with minimum side effects.

Good luck, Madeline & Blue Sun,

My symptoms took awhile to develop and they became more "lupus like" over time. They use plaquenil for a lot of autoimmune diseases and some are pretty subtle, like Sjogrens. Now days, they are saying I have undifferentiated connective tissue disease, but I'm not sure if they have switched me back to fibro.

It took me 7 years for a doctor to try me on plaquenil, since my bloods didn't show enough. It took a long time, but I felt so much better.

I use steroids several times a year to lessen the pain. It is worth trying. Generally once it is under control it is "good" for a while.

I use it sometimes when I go into a flare. But my doctor doesn't like to use them because of the side effects. I don't take any pain killers for my pain. I'm super sensitive to pain killers so I just do without them. I don't have flares that last for more than a day so I will be fine once it passes. If I am in a flare and I'm at work I just take a 15 minute break and lay on my office floor for a few minutes. If it's bad before I go to work I stay home and take my gabapentin and muscle relaxers and just try to sleep it off. Hope you find something soon.

Beware: Plaquenil has side effects too: You can go blind. If you're going to take it, make sure you see an opthalmologist for a baseline exam and consistent follow-up while you're on it. A good opthalomologist will detect changes in your eyes before you actually feel the change in vision.

Also, Plaquenil can be irritating to the stomach.