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greymoon

New member
Joined
Nov 1, 2014
Messages
2
Reason
Undiagnosed
Diagnosis
10/2012
Country
US
State
WA
I went to see a rheumatologist back in July; during this visit, I explained the fact that I had pain in all my joints, would get "flares" in both my hands at the same time to the point where I lost most of the strength in them in addition to the pain, etc. But, I was there primarily for assistance with medication for the scoliosis/degenerative disc disease that was discovered a couple years ago, and gives me its own major chronic pain.

I just found out about three weeks ago while at my regular PCP that apparently the rheumatologist had diagnosed me with "probable fibromyalgia", although he had never actually discussed that with me. It was just in the chart that my PCP had requested.

What does that even mean? I thought I understood what having fibro meant, as I lived with people that had had it before. I always assumed that my memory and cognitive "fog" was due to the medications I was taking, and that my constant joint aches and pains were from being hypermobile. I don't have the painful points on my body.

How can someone have "probable fibromyalgia"? I called that office back as soon as I found out about it and was told that they "don't treat fibro", when all I was asking for was a clarification or proper diagnosis (something that is very important, as I am in the midst of a disability claim).
 

Tharper

Active member
Joined
Aug 13, 2014
Messages
90
Reason
DX FIBRO
Diagnosis
07/2014
Country
US
State
FL
That is what my records from the rhuematologist said after the first visit. She is treating me for fibromyalgia and polymyalgia. I'm wondering i fI should speak to her on our next visit to clarify and to have it clarified in my records. I never thought of that. I think I am a little ways off of filing for any type of diability. I hold a full time job as painful as it is, so when I get to the point where I can't take it and have to call in alot and miss work etc. Can you make another appointment with the doctor and discuss it then?
 

greymoon

New member
Joined
Nov 1, 2014
Messages
2
Reason
Undiagnosed
Diagnosis
10/2012
Country
US
State
WA
Well, my original disability claim stemmed just from my back issues. But if I have fibro I def need to include that as part of the claim, especially seeing as how I'm only 35 and a lot of the time they will just look at that and say "you're too young, go back to work, lol". I haven't worked "for real" since 2011ish, I went out on short term disability/FMLA for psych issues before the physical stuff started, so it's been rough.

I didn't know I had scoliosis until 2012, when we discovered it after I "pulled something". Now I've been diagnosed with the scoliosis, osteoarthritis/degenerative disc disease, bulging discs/dessicated discs.

Shortly afterward I started having issues with major joint pain in my elbows, hips, knees, etc. I pop and crack like a popcorn popper, sometimes my hips and shoulders will pop out of place and I have to pop them back in. Sometimes my hands will hurt and lose strength to the point where I can't lift or manipulate things or do more than use them like, well, hams attached at the wrist. I generally ache all over, I have problems with memory and I often jumble words or can't even find the word, I have terrible insomnia but often I feel so tired that I can't do more than just sit on my computer. I get horrible muscle tension and random muscle twitches in my arms and legs. So I have a LOT of the symptoms of fibro, I just don't have the painful trigger points, aside from the spot on my lower back which can be attributed to my spine. On top of my psych issues, major depression and anxiety, I can't work. I have tried since all this started and my body and my head couldn't take it. :(

My PCP is going to contact my rheumy and ask just what on earth they think they're doing, giving a "probable" diagnosis but then saying they don't treat fibro. Basically I am just confused as all heck about how a doctor could give a "probable" rather than a yea or nay. My disability claim JUST went to hearing level so I'm basically just clueless and lost about all of it.
 

camille14

Member
Joined
Nov 16, 2014
Messages
15
Reason
Undiagnosed
Diagnosis
10/2008
Country
CA
State
New Brunswick
I would get a second opinion. I had two rheumy give the diagnosis as well as all the test to eliminate anything else possible. Altough, sensitive spot usually accompany fibro. My fibro and most of all that i heard from people, you basically wake up one morning like youve been hit by a bus. Pain... I had joint pain in all my joint, muscle burning, aches and flare ups.also bone pain and tension everywheres. This is what it often looks like.
 
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