Frustrating Appt with Rheumatology

Holly_475

New member
Joined
Oct 20, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
Hi all. Without going into it in depth, I meet all the symptoms/issues for Fibromyalgia, and two people I know who have it said it really sounds like that when I described my symptoms - before I knew they had it themselves. I took the online test suggested here and it said I meet the criteria via Scenario A.
Had a phone appointment with a rheumatologist today. Gave him all the details I’d recorded/noted, past history etc. And he just... shrugged almost. Said I didn’t fit any rheumatological disorders, but he was sending a blood form and I should have them done ASAP, and I would have an in-person appointment with them before Xmas.
I asked if he could think of any reason why I’m in so much pain, why I had all these symptoms. He said he didn’t know.
I’m not trying to self diagnose or make it fit, but I’ve been suffering so long and I feel so frustrated and depressed about this. No one can seem to give me a diagnosis so I can get help. Why is he bothering to test and see me if he’s saying he doesn’t think I have a rheum issue?
Did anyone else have this issue when they started out investigating these health issues?
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
304
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
All's "well"... - Believe it or not, this is always how it has to go... :-/ They can only decide if it's (perhaps) fibro if they first prove it isn't rheumatological - meaning inflammatory - or anything else - meaning they might send you elsewhere to exclude other things.
If you want a detailed story of my last year ending in 40+ specialists in almost all 25 disciplines to put your story into perspective, read on...: After trying to impress me that there are 400 kinds of rheumatism, my first rheum Oct19 couldn't find anything inflammatory, then sent me to radiology MRI and gastrointestinal (colonoscopy) which excluded ankylosis spondylitis (but showed a probably harmless tumor in my spinal cord). With that done he stated that fibromyalgia isn't really rheumatism, people are just putting it there for want of a better place, and with that he sent me on and left me to neurology and endocrinology, who didn't find anything much either, the neurologist sent me to a psychiatrist and he to a sleep lab (who sent me to ENT, which didn't help, but the psychiatrist there is great, delved into fibro and is still helping me with ideas & rehab), parallel I went to an orthopedist (who unsuccessfully tried her best), sent my stuff to a centre for rare diseases (who after the recent appointment & checks there have suggested Sjögren's, waiting for test confirmation) and left a parallel appointment to another rheum for a second opinion, who diagnosed fibro Feb20. After that I went to pain docs, but no meds helped (neither did herbs nor highly dosed vitamins & minerals). Suddenly my GP checked (24 hours) and found high blood pressure, which resulted in finding out I have hyperlipidemia and vascular and heart issues, meaning 4 docs and 5 meds. Surprised & a little bit shocked I got every other symptom checked: allergies, skin, bladder, but they could just confirm what I already knew. After that I tried 2 weeks in a rheum clinic, 4 docs, no help.
What I learnt for my body is: Each doc did their best and each helped a tiny little bit. No meds helped, most harmed, most physiotherapy also. I could have searched & tried osteopaths and similar earlier. I wished I had known that cryotherapy & acupressure is best for me earlier. But in the end it's the same story as all my diagnoses all the decades before fibro: I needed time to get to know my new body reactions and analyze each symptom myself and now I'm on a good path as you can read in other posts of mine.
 

Holly_475

New member
Joined
Oct 20, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
All's "well"... - Believe it or not, this is always how it has to go... :-/ They can only decide if it's (perhaps) fibro if they first prove it isn't rheumatological - meaning inflammatory - or anything else - meaning they might send you elsewhere to exclude other things.
If you want a detailed story of my last year ending in 40+ specialists in almost all 25 disciplines to put your story into perspective, read on...: After trying to impress me that there are 400 kinds of rheumatism, my first rheum Oct19 couldn't find anything inflammatory, then sent me to radiology MRI and gastrointestinal (colonoscopy) which excluded ankylosis spondylitis (but showed a probably harmless tumor in my spinal cord). With that done he stated that fibromyalgia isn't really rheumatism, people are just putting it there for want of a better place, and with that he sent me on and left me to neurology and endocrinology, who didn't find anything much either, the neurologist sent me to a psychiatrist and he to a sleep lab (who sent me to ENT, which didn't help, but the psychiatrist there is great, delved into fibro and is still helping me with ideas & rehab), parallel I went to an orthopedist (who unsuccessfully tried her best), sent my stuff to a centre for rare diseases (who after the recent appointment & checks there have suggested Sjögren's, waiting for test confirmation) and left a parallel appointment to another rheum for a second opinion, who diagnosed fibro Feb20. After that I went to pain docs, but no meds helped (neither did herbs nor highly dosed vitamins & minerals). Suddenly my GP checked (24 hours) and found high blood pressure, which resulted in finding out I have hyperlipidemia and vascular and heart issues, meaning 4 docs and 5 meds. Surprised & a little bit shocked I got every other symptom checked: allergies, skin, bladder, but they could just confirm what I already knew. After that I tried 2 weeks in a rheum clinic, 4 docs, no help.
What I learnt for my body is: Each doc did their best and each helped a tiny little bit. No meds helped, most harmed, most physiotherapy also. I could have searched & tried osteopaths and similar earlier. I wished I had known that cryotherapy & acupressure is best for me earlier. But in the end it's the same story as all my diagnoses all the decades before fibro: I needed time to get to know my new body reactions and analyze each symptom myself and now I'm on a good path as you can read in other posts of mine.
Thank you so much for your reply. So far I have a neurology consultant, who has seen me since I had a spine lesion in 2018. Many MRIs. I also see endocrinology who have done a sleep study and found early stage underactive thyroid, now normal level with medication. But the constant pain and fatigue, poor focus, worsening IBS continues, and it’s really putting stress on my mental health conditions. I’ve seen the acute, unexplained symptoms unit too. They’ve been working on this since August 2019. I think the Rheumatologist’s “it’s not rheumatic” after a 15 minute phone call just crushed me a bit.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
304
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Well that sounds very much more like my story than anything else I've read so far. :)By comparison it would mean getting a second opinion or getting a new one ...
 

Holly_475

New member
Joined
Oct 20, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
I guess I’ll get the bloods he’s ordered and go to the in person appointment they’re arranging. Maybe I’ll get further face to face, and hopefully they’ll do these steps/tests he mentioned. Not giving up, but it’s hard to have faith if he’s already written me off. I could be generous and think that while he’s not clear on the cause at this point, he’s willing to investigate further, rather than being dismissive. I’ve emailed a note to the neuro consultant just filling him in. I understand sometimes neurologists chip in on this kind of problem.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,052
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
It is always a long road to diagnosis with these sorts of things. Just be persistent and don't let them get you down. Also, get second ad third opinions, and do a lot of your own research. Knowledge is power....be sure to arm yourself with all the info you can.
 
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