I just came from my Ra dr. and was diagnosed with Fibromyalgia. I always thought that fibromyalgia was a non- disease, really. I have made 4 trips back and forth to ra dr. in the past month. She has done different test on me and along with diabeties, pa., ra.,, she has now tacked on fibromyalgia. I have always thought of that as a non-disease, as some one of my nurse friends have made fun of people who had that and said it was a non-disease. But my ra. dr. diagnosed me with it. What is this? I see websites that say it is a real disease. Anybody have this? Am I alone? Please all that know any about fibromyalgia let me know of your symptoms. I would like to know. Thanks.
Dear Vanessa, I could have written your post word for word. I, too, was recently diagnosed with fibromyalgia by more than one doctor. The doctors touched these pressure points all over my body and all were tender. I had always thought fibromyalgia was something chronic complainers with no real illnesses had. I didn't even want my rheumatologist to put it on my chart, lol. I don't tell anyone I have fibromyalgia. I only mention RA. I don't think fibro is a disease so much as it is a collection of common symptoms. My doctor put me on cymbalta (not really helping) and wants me to take a muscle relaxer at bedtime (haven't done this yet). He also says exercise and proper sleep at night is a must. What has your doctor told you?
p.s. as far as symptoms...I am extremely tired (but thought that could be due to the RA), and all those pressure points he touched are always tender.
I have fibro too. Very common along with the RA. It is something very real and it is something that can be treated.
Check out this site for some fibro support http://www.immunesupport.com/
Yes, yes, My husband has gone to fill the cymbalta, and also a sleeping pill but I am not sure what it is called. I will post it when he gets back with it. I am kinda embarrassed that I was diagnosed with this. Yet, I am tired alot, and I have chronic tiredness and aches in my muscles and back for no explaination, except ra. Heachaches. Sleepness. I have never complained but this has gotten to the point that it is getting over whelming and I am crying and today my pulse was over 98. My blood pressure was up because I have been in so much pain lately and when she touched me on the pressure points, I thought I would scream. I was even embarrassed to tell my husband, although when I did tell him he said had seen a t.v. program about fibromyalgia and he thought to himself that that sounded just like me. (Wow) (Why did I worry about telling him?) I am not sure I understand everything about this, but I am going to investigate it futhur.
Vanessa, I can understand how you feel, but fibromyalgia is very real, even if it is a collection of symptoms and conditions rather than a "disease". I was diagnosed with fibro 6 years before RA and it can be just as debilitating. You are not alone and there is no reason to be embarrassed. After you learn more about it, maybe you can help to educate your nurse friends?
I would recommend checking out:
http://www.fibrohugs.com/
The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed
I think what makes it so difficult is that there is no linear treatment plan. At least with RA, there are some standard treatments.
For my fibro, I am taking Relafen (NSAID), Skelaxin (muscle relaxant), Lyrica (anti-neuropathic - nerve pain) and pain meds. Cymbalta did not help me. I have tried acupuncture and physical therapy with little-to-no benefit, although I know they help many people. I have added extra allergy prescriptions to help aid my sleep (a sleep study showed my congestion was affecting my sleep quality), and I see a chiropractor from time to time.
I hope the medications are helpful to you, and that as you learn more about fibro, it will be helpful rather than overwhelming. You are not alone.
Oh Vanessa You just wrote most of us who has Fibro's bio. I can't add anything much to the other posters replies but please don't feel embarassed. I've had this twenty years and was lucky enough to have a Dr. that did believe it was a real condition. We know how you feel and you need to take your prescribed medicines. Sleep deprivation is the worst thing you can do to your body right now. It only causes more muscle tensions, fatigue, headaches, and your body needs sleep to heal. The meds your Dr. is putting you on are the norm for Fibro, sometimes the anti-depressant has to be changed to find one that works best for you (I take Paxil) so tell your Dr. everything when you go for rechecks.
My Fibro has become much worse in the last year or so and am being tested for RA at the end of the month. I'm pre-menopausal and think it has triggered something(?) else, hormones play a big role in all this too. You know your body best so it may be a good idea for you to keep a journal of sorts to take with you to the Dr. I'm so sorry you're going through this but you have come to the right place for help, laughter, sympathy, or a need to vent out your frustrations. This is a great group of very knowlegable people who are always here to answer any questions you have . Good luck and keep us posted on your progress
Moana, something you said struck a nerve. You may be on to something with your questioning a hormone link. The terrible pain, stiffness, etc. that I felt when I was premenopausal stopped completely when I was put on hormone replacement therapy and didn't come back for several years until I started cutting back on my estrogen, because I was afraid of the long-term consequences. My RD said I may have FM too, although I have no pressure points. I told him I thought I could stop most if not all of the symptoms again by upping my estrogen but he said there's other things going on and to change my hormones now would "muddy the waters." He wants to see what his meds can do. Makes sense to me, but I just wanted to tell you that at least for me, many unpleasant things happened when my estrogen levels dropped and improved greatly when I start hormone therapy. Unfortunately, the left-sided weakness was not helped at all, which is how I ended up with an RD and my current diagnosis. Anyway, talk to your OB/GYN to get his/her advice as well. We women have the added confusing mix of hormones to deal with, as if our challenges weren't big enough!
I, too, was diagnosed with fibro long before RA. And I also hesitate to mention it when asked about my health problems. Cymbalta did not help me at all. I am now using the anti-depressant EffexorXL. I take a sleeping pill every night, but think I'll have to change again. It's hard to find one that helps me have good uninterrupted sleep, and doesn't make me feel like a zombie the next day. In fact I can't remember the last time I slept more than an hour without waking up. That goes on all night long.
I see a pain specialist for my many health problems, most of which cause chronic pain. As I've mentioned before I take Methadone for pain and Morphine Sulfate IR for breakthru pain. Some nights I can't stand to feel the sheets on my body. The slightest touch causespain. But I don't think it is all from the fibro. I also have neuropathy, polyradiculopathy, OA and many problems with my spine.
But my PCP diagnosed fibro many years ago and the rheumy confirmed it several years before my tests showed RA.
Don't be embarrassed. First you must realize it is a real disease or so many doctors wouldn't be using it as a diagnosis. I know there are still doctors that don't "believe" in it. But how can you discount something that causes so much pain?
Hope your doc helps you feel better.
Gentle hugs,
Nini
Jesse I too was on HRT over the years and birth control pills. I have to say whatever the link was there, I felt "better" and didn't have nearly as bad or as often flares of Fibro. I was taken off a few years ago when the threory was negative about HRT. I think the theory changes quite often (sigh). But yes I do think and have read a few articles about what hormonal changes can be linked to. It's a roller coaster ride to say the leastI also take Restoril but it isn't working too well. Going to try to get a different sleeping med. Sometimes I think the only thing that will work well would be a sledge hammer
Let us know how the meds work for you.
Be well.
Here's an article that talks more about the legitimization of Fibromyalgia as a true medical condition...
http://www.medicalnewstoday.com/articles/75174.php
NINI I use Ambien and it gives me about 4 good hrs of sleep, I only take it about 2 or 3 times a week because it may be addictive.
Vanessa flexeril is an old drug that I was put on 20 yrs ago. I don't have to take it every day but I sure am never without it. I hate the hungover feeling I get with it and it makes me irrateable if I can't sleep it off. It works on my muscle spasms better than Skelaxin but thats an individual choice.