Chronic Pain

OK, I'll make this kind of short. I have lupus. That much is for sure. I went to a pain management specialist for help in controlling my pain. He said I also have fibromyalgia and said that there's nothing to be done other than a pain patch and Lyrica. I wasn't satisfied with his answer and went for a 2nd opinion. I was told I don't have fibromyalgia but sacroiliitis. I was given a narcotic drug, percocet, and a strong muscle relaxer. They also want to inject local anesthetic into my sacroiliac joints. So, here's my dilemma...who is right. I have most of the tender points of fibromyalgia, and pain in the joints they are talking about. Do I have both? Neither? Ugh....guess this wasn't so short after all. Sorry.

Diana

Hello Again Diana

Wellll Hmmmmmm? hehe

Your questions are very good ones and If I were you, I'd want to have a definate answer to them, but most of us here are not medical practictioners and if we did answer your question, it would only be from another pain pt just like you.

I've never known FM to be a hurried diagnosis (not sure how long or how many times you've seen the first doc) Normally it takes months & or years to receive a diagnosis of fm and it is only given, after many many tests to rule out all the other possiblities.

I have personally noticed that a great many of Lupus patients seem to have FM too, but that's not always true.

We are all very fortunate here on this site, we have personal access to one of the experts in the world of FM and I would suspect she may be stopping in some time later today or tomorrow. If you'd like I can send Karen a message and let her know that you have some questions

If I were you, I'd read all I could on the symptoms and diagnosis for FM/CFS, then I would also start a pain diary to track your high & low pain for every day, the time, what you did to try to bring it down, if your home treatment helped. How your sleeping, how's your fatigue & energy levels, where the pain is located each day and if it changes through out the day, keeping close attention as to whether the pain is in certain parts of the body all the time or if it's in all four quadrants of your body and wide ranging. Is the pain aching, stabbing, electric shock, etc. Describe it in your own words and be precise.

I was a Chronic Pain Patient for four years, I see my primary care and a pain mgt doc, they work to gether and it was not until my pain doc reviewed my pain diary thoroughly and gave me the diagnosis of Fm, on top of my spinal pain. I did not know much about FM, but had heard others make fun and say really negative things about those who did have it, so I was very apposed to getting the diagnosis and afraid of it too. After 4 years in pain, I was still determined that I was going to get better and a diagnosis of FM, Forced me to realize that my doctors were right and I was not going to get better and my pain would only get worse over time.

There was one thing that I wanted to ask you? Do your doctors know about each other and do they also both know that you've gotten pain meds from both of them? I just wanted to also let you know, that if you don't tell them, you may find your self with no meds and neither of the docs willing to see you anymore.
I can completely understand that a person may not want to talk about wanting a second opinion to your first doc and feel it's not their buisness, but for your safety & also to make sure they understand your not a drug seeker, I would make sure you talk to them and let them know about all your meds.

I'm not trying to butt in on this one, but I've seen way too many pain patients get into all kinds of crummy situations with docs & pain meds, even when they are completely innocent of med seeking. I just thought I should make sure and be honest with you and since I don't know the whole story, I may be talking out of turn, so please forgive me.
Just becareful, as much as I hate to think about it. Our doctors have complete control of how we can possibly be able to even slightly function in life. Without my meds, I would be stuck in bed for weeks at a time and unable to walk. I have a pain contract for my meds and am held accountable for everything I do and am not allowed to see another doc for my pain.

Hope your having a very nice day
Take care and I hope to see you around more
Gentle Hugs
Betty

Thanks for the info and honesty. I have been keeping a pain diary for over 3 years and have had a bazillion tests over the years, do the FM diagnosis wasn't a rushed thing by any means.

As for the doctor...I got a temporary release from my first doctor stating that he would provide me with no meds until I had a letter from the new dr indicating he had not prescribed me meds. And, the release said, should I decide to sign a pain contract with the new dr I would just have to notify them within 72 hours of the appt, which I did when I decided to give the new dr a try. So, as far as meds, drug seeking, etc...I covered my butt on that one already.

I guess, after as many tests and procedures as I've had done, one more to try a diagnosis won't hurt...hehehe. The injections of my SI joints happens this Friday and I was told maximum pain relief couldn't be expected for about 2 weeks, although I should start to notice some relief within a couple of days. We will have to wait and see, I guess.

But, on a brighter note, the med changes my new dr gave me are amazing! My pain is alot better when I take them (the muscle relaxer, Robaxin is 3x day and Percocet is as needed). I'm only going to start taking the Robaxin 1-2 day because they knock me out. The Percet brings relief within 30-45 mins.

Thanks for listening.

Diana

Hi Diana,

I commend you for being so thorough and persistent in trying to get an accurate diagnosis. I know how frustrating that can get!

Betty is right – a lot of people with Lupus also have fibromyalgia. Of course, I can't say for sure, but if you have most of the tender points, there's a pretty good chance you do have FM. And since you said the FM diagnosis wasn't a quick one, I'd say it's most likely correct.

Whether you also have sacroiliitis is a more difficult question. Sacroiliitis is usually hard to diagnose – especially without one or more tests. Here's a link that lists the tests used to diagnose it: Sacroilitis Tests and Diagnosis While you're there, check out the symptoms and other info on sacroilitis to see if it sounds like what you're dealing with.

Glad to hear you followed proper procedures regarding your treatment agreements. As Betty mentioned, we've heard some real horror stories from people who didn't pay close enough attention to what they had signed and inadvertently got themselves into all kinds of trouble. We try to warn people ahead of time now.

I'm also glad to hear your new medications are helping so much. Yea!

We're glad to have you here on ChronicPainConnection. Let us know if there's anything we can do for you.

Best,
Karen