Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hello all! Just joining the group today. A little about me...I was formally diagnosed with fibro in July 2014 after a few years of aches, pains, fatigue, etc. My PCP sent me to a pain specialist whom I've been seeing for the past year. My frustration is this...every time I see the NP there (I've only met the doctor on initial visit and I'm not disrespecting NPs as I am a RN myself)she asks where my pain is located. When I tell her it is generalized and all over, she looks at me like I am crazy and says, "But where is your exact pain? And can you rate it for me on the pain scale?" I look at her dumbfounded because there is NO exact location. I hurt ALL OVER. The pain scale is different for different parts of my body. When I tell her its impossible to name just one location and one pain rating, she looks at me as if I am a hypochondriac. So I will finally just tell her one of my pain sites and a pain rating. She appears satisfied that she has something she can enter into her laptop. When I have mentioned to her that some days are worse than others I guess Im just tired of not being heard and feeling like I'm being lumped into a "drug seeker type" category. Up until all of the pain of fibro, I had never take a pain medication in my entire life AND that includes having 4 babies natural. I have never taken more than my prescribed dosage but again there are days...only during a flare...that I feel I need something to help a little more. I also take Flexeril 5 mg occasionally at night and a Vitamin D supplement daily. I occasionally use Dottera Deep Blue muscle rub on bad days. I guess my question to the group is this...how do you get your provider to take you seriously and not just group you into "one of those" catergories? Sorry so long-winded, but this has had me upset for quite a while.
Was not officially DX'd until 1994 so I was given the wrong meds for about 12 years. As a result I can no longer take any meds so I depend on a couple of vitamins & supplements to try & bring me some relief.
Also my doctor visits lately have become almost comical. I've had several doctors tell me to go home & treat myself (specialists as well as PCP's) & one actually told me about a year & a half ago that I have had fibro for a long time. At least she could do the math.
Here's what I tell most people these days when they ask me where I hurt. I tell them that on my good days I hurt from head to toe & on my bad days I hurt from toe to head. As you can see a good sense of humor is one of the best meds we have in our battle with this wonderful disease. One that I would not want to wish on my worst enemy.
Not sure I have offered you much help but as you can see we definitely are outside of the box when it comes to traditional medical treatment.
Hang in. Sure hope you can find some relief soon.
Feel free to browse our daily check-in. It's where we sort of have our communal morning cup of (something) and see how we're all doing. Even if it's 8 PM, LOL:-)
I was dx'd in 1995, at 25. Ugh. I was blessed that the doc who dx'ed me? Was a male rheumatologist *with* fibromyalgia. No pooh-pooh, silly little woman, oh fiddle-dee-dee crap. Ruled out the other possibilities via lots of tests and here I've been since.
Yes, docs are *Impossible*. Either they want you to go away so they kick you to a pain clinic that says you don't need painkillers b/c fibro is neuromuscular (so is a torn muscle, and it hurts, too, darn it).... Orrrr they say it's not fibro, it's you (yes) being a drug seeker.... Or a welfare cheat or or or or or... Bah phooey. Thanks to a few high-profile celebs dying of prescriptions, suddenly it's farewell to pain meds for the rest of us. While I freely admit addiction is a serious issue, sheesh, if you're feeling the pain you are *not* feeling any happy out of the pills unless you're overdoing the meds---and that's not great either---and....
As you can tell, a pet peeve, LOL. I was injured in 2011 and can't get pain meds for pelvic scarring and spine issues. Ya kiddin' me? Nope.
So:
First thing?
Fibromyalgia for Dummies. Best book we as a group can recommend. For you, for yoru fam, for your doctors, you name 'em.
You cannot change doctors' minds. You can only change doctors. I find it helpful to print out and take along the Mayo Clinic definition, or similar. Neuromuscular of unknown etiology causing widespread pain and fatigue. Fits a lot of ailments, but if you're stuck with FM dx, for some reason, they forget that part and go for "Oh it's just...." *eyeroll* Yeah. Live in this skin for a week, see how you do, doc.
Frustration and anger are part of grief, and we are all in some stage of grief at some point, because this sucks and takes a lot of energy and life-stuff away we'd like to use on something more fun. S
Finally? Self-care! Healthy diet, hydration, and *gentle* exercise (imagine FM meaning you have a mild head-to-toe sprain, and exercise as if you are, indeed, a giant walking sprain. I did that, and do that, and it seems to help.).... Not because they cure anything, but b/c the better our baseline health, well, the better our baseline health.
Sorry so long, but I'm the chatty cat on the board in the early AM. THen I vanish. *zzzz* True cat. Sleep all day, up half the night.
Again, welcome:-)
It is incredibly frustrating. I am now with a doctor that I love, but even she was hesitant to prescribe anything. I think the trick is to ask for a referral to Pain Management. My mom, who also has fibro gave me this advice, and it has worked. I recently had my PM consult, and she was shocked that I have not received more treatment for chronic pain. She made up a huge list of medications and basically ordered my doc to prescribe me something. I'm not just waiting on my PCP to decide which medications will interact the least with the other meds I take.
I know it is a huge pain to switch doctors or nps, but really it makes life so much easier. I had so much anxiety about it, but now that I am so much happier with my new doctor, I would recommend to anyone to change if they are getting nowhere with their current one.
As an EMT, I do know a lot of people do go to the ER to seek drugs and they often keep switching hospitals. It is sad that they do that and ruin it for those of us that just need relief. My doctor recently gave me a torodol shot in the office because I was in agony. It didn't kick in until 2 hrs later, but man was I feeling good then. Probably could have done the whip/nae nae! (I have teenagers)
Good luck. Hang in there. Be as knowledgable as you can. It is your body and we don't hurt in the same places equally on a daily basis.