Its been a few weeks since I have been in trouble. I know a number of you ladies have dealt with the fibro thing and I know I have caught it on mor than one occasion when I have suggested a fibro Dx is a kiss of death but when I read this on another site I just HAD to bring it here...............
"At the final evaluation the accuracy of the diagnosis regarding FM by either the referring physician or by the rheumatologist at the time of the initial visit was correct in 34% of patients"
Those little black dots are enthesitis points used to diagnose PsA. Guess howm many of them are FM triggers???? The treatment of FM as opposed to PsA is different. It matters
Great info!!! Thanks so much for posting this, as my friend with fibro is trying to understand why I haven't been diagnosed with fibro as we have incredibly similar complaints (only she doesn't have the damage/degeneration). Off to do the assigned reading, although I can say that I probably won't test well, as I'm having short term memory issues. LOL
Interesting read, thanks Lamb. I have a lot of pain in my hips, pelvis area, lower back and have had for a long time. I thought it was all the years of running and or maybe a minor car accident in my early 20's along with a failed spinal during the birth of our daughter.
My rheumy is aware, it feels like I have bursitis in both hips but the pain varies daily and increases from side to side. Sitting for too long, walking, running or any movement hurts some days. I find when I sit for prolonged periods of time there seems to be a nerve feeling that radiates down my legs. Sleeping is tough, pillow between my knees and rotating sides all night. Hips and shoulders make sleeping through the night impossible. I've never thought of FM, have an aunt who has it but also a lengthy family history of different arthritis.
We can always count on you to stir things up! Good conversation. Thanks for the pic. I am a visual person so this is good. I have previously mentioned that I have been dealing with the PsA DX for a couple of years now. Taking the prescribed meds etc. In early spring my rheumy brought up the fibro dx in addition to the PsA dx. He stated it is common for folks to have more than one autoimmune disease. Although skeptical (but desperately wanting to stop the constant burning) I agreed to the new med. In addition to my PsA meds he added another med that helps my body diffuse the pain. It has helped minimize the constant pain so I cannot discount his dx. I am scheduled for a follow up visit on Monday so I will see if he still agrees with his DX. Stay tuned...
In the meantime, thought I would share a study that I found regarding having PsA and Fibro.
I find this interesting as when I saw the rhumey 8 years ago she said I had fibro told me to quit my job and there was nothing she could do for me. With in the year my first bout of psoriasis started. I always questioned the diagnosis.
When I started having more and more soft tissue pain (in the past couple of years), a few dr's have tried to tack Fibro onto me. NOPE! Once I read the PsA book and talked to people here it was so obvious the overlap makes things confusing.
I’ve had every doc try to lump me into fibro at some point. By now, I’ve tried every drug that is indicated for fibro, and have felt no relief. My pain is in my joints! It is not muscle pain or nerve pain. All of the pain is related to enthesitis! I can actually feel the tender, inflamed, raised and hard tendons. Does that sound like fibro?!
Just because you can’t figure it out, Doc, doesn’t mean it’s fibro!
It is all so confusing - or is it just me? If there were a single blood test or some sort of test to pinpoint precisely what the dx should be - it certainly would be easier. for us and the doctor's. there seems to be so many 'diseases' that have the same symptoms but no accurate dipstick to say what exactly is the issue. My brain gets tired of thinking about what is causing me issues. Some days i feel like a guinea pig or science experiment to see what medicine, food, vitamin, or diagnosis works/doesn't work and makes me feel less crappy - less tired - less in pain....and allows me to sleep!!! sigh.....Is it just me? :-(
I've had every doc try to lump me into fibro at some point. By now, I've tried every drug that is indicated for fibro, and have felt no relief. My pain is in my joints! It is not muscle pain or nerve pain. All of the pain is related to enthesitis! I can actually feel the tender, inflamed, raised and hard tendons. Does that sound like fibro?!
Just because you can't figure it out, Doc, doesn't mean it's fibro!
LOUISE! You are so sassy! And funny! I sprayed my gulp of diet coke everywhere after reading that. Quite freaked the cat out, but she’ll live.
It has gotten to the point that I can’t hear the word fibromyalgia coming from a doctor without my neck and shoulders getting tense, and my blood creeping up my neck and ears.
I have been taking Remicade for nearly a year and I am finally starting to get really good relief. By that I mean that my disease is more like white noise now instead of front row at a Pantera concert. I still have the odd swollen, stiff joint, or inflamed tendon, but overall it’s not too bad. The time spent waiting on my drugs to work was pretty hellish and no doc could figure out why I had such severe pain or swelling, so I kept getting fibro diagnoses. Well, now there is no argument. It ain’t fibromyalgia, because (last I checked) it doesn’t respond to Remicade. Maybe there is a drug out there that would work better than the Remicade does. In fact, the doc at the PsA forum I just went to said I should keep looking. If I had been given that option months ago, I might have been interested in finding out. Now? I’m doing okay, not perfect, but I can function and live my life. I’m too afraid to give up what relief I have to search out something better. Because of doctors refusing to believe that my symptoms were real, so much time was wasted that could have been spent tweaking my meds. That’s why I took time off of work, that’s why I switched to a desk job. I’m too busy enjoying my life as much as I am able to risk it all now.
I didn’t mean for that to turn into a rant. I didn’t even know that was how I felt until I started writing!
I don’t know where to begin, but there needs to be more awareness in the medical community of how this disease can look! It’s amazing that so many specialists don’t understand how symptoms can manifest.
It is absolutely NOT just you. The single most frustrating part of this disease is dealing with medical professionals who don’t know what to do.
breckstar said:
It is all so confusing - or is it just me? If there were a single blood test or some sort of test to pinpoint precisely what the dx should be - it certainly would be easier. for us and the doctor’s. there seems to be so many ‘diseases’ that have the same symptoms but no accurate dipstick to say what exactly is the issue. My brain gets tired of thinking about what is causing me issues. Some days i feel like a guinea pig or science experiment to see what medicine, food, vitamin, or diagnosis works/doesn’t work and makes me feel less crappy - less tired - less in pain…and allows me to sleep!!! sigh…Is it just me?
You’re so right about medical professionals who know little or nothing about this disease. That’s why I gifted my GP with her own autographed copy of the Gladman/Chandran book. Come to think of it, she hasn’t sent me a thank you card yet.
Well Seenie her manners suck but she may still be a great doctor!
Grumpy I agree medical professionals need more education on PsA. I have been thinking of giving my Rheumy her own copy of Seenie's book The Facts. I try to educate her during my visits in a gentle, chatty approach but even she, and I think she is fairly good, has used the F word with me and disbelieved/minimize my pain level. I am also on Remicade but would like the dose increased or the interval decreased but so far she has not okayd it. I get some relief but still more bad days than good. I am glad you mentioned you have been on it a year. I have been on it 8 months now. I'll ask again at my next visit but she better not use the F word again!
