Diagnosed but now another doctor saying I don't have it

Amy

New member
Joined
Jun 24, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
11/2020
Country
UK
Hi,

I got a diagnosis last year, my symptoms have been ongoing for years. Pain in Upper thigh, back, neck mainly. Hot and tender to touch, stiffness and aching. Extreme tiredness, depression, stomach and memory problems. I had routine bloods done recently and found my CCP has been rising for 2 years so referred me to a rheumatologist to see if I had rheumatoid arthritis. I went they focused on my history of depression and told me I don't have Rheumatoid Arthritis or Fibromyalgia and that I have weak muscles. I am extremely confused by this and struggling to get in touch with my doctor to find out more.

Thanks
 

Fibro mum of 2

New member
Joined
Jun 25, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
01/2016
Country
UK
State
WY
Hi I understand your frustrated I went through the same myself I dont think these doctors seem to know much about fibromyalgia so just mess u about I have had fibromyalgia for 5 years and last year I only just got on the right medication to help me get out of bed try keep pushing the doctors you know your body more than them I hope you get a answer soon
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
145
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Doctors often tend to focus on one particular thing and call it good. Find one that you have a good repore with and are comfortable with. It can make all the difference :)
 

Maxie

New member
Joined
Jun 11, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
01/2017
Country
UK
Hello Amy. :)

Mmmm I know what you mean. The trouble is that fibromyalgia is such a kind of blanket term that it’s easy to confuse it with other things. I think perhaps they only diagnose fibromyalgia when they’ve decided what you haven’t got! I wonder what they mean by saying you have ‘weak muscles’? Did they explain? What will you do next? I’ve seen two consultants who both say I’ve got fibromyalgia, which they established by literally poking me hard with their finger in various places until I yelped. Hardly a ringing endorsement for accurate diagnosis...
 

Ann Reid

New member
Joined
Mar 30, 2014
Messages
6
Reason
DX FIBRO
Diagnosis
03/2005
Country
USA
State
Nj
Yeah, I get this, and I hear EACH OF YOU , and after almost 30 years of “maybe, could be, sort of, I THINK, etc., etc., etc., etc”, it ALL seems to boil down to this FOR ME- memorialize and document your symptoms in a daily diary, keep asking questions, TRY conservative recommendations, research the more out-their recommendations, consider second opinions, be respectful if you have a medical professional BUT KEEP BEING “WATER ON STONE” if you’re not getting symptom relief AND an objective and respectful appreciation of YOUR TRUTH.

My relationship with my internist is well over 30 years long. When I began seeing him, I was AT LEAST 100 pounds overweight. He and I would occasionally bring up weight losss surgery, but with honesty, it was I who knew that even if I lost that weight, my life would not become a Princess-Magic-Happy Ending place, and IT DIDN’T.

We EACH have a confusing, complicated, uncomfortable, perplexing condition, and we EACH have to figure out how to advocate for what we need to remain as comfortable and as functional as possible and THEN FOLLOW THROUGH.

Just right now, I’m slowly s-l-o-w-l-y attempting to wiggle out of a really difficult and troubling flare. Covid has both blessed me with long stretches of time when I couldn’t go anywhere even if I wanted to, but also shutting down opportunities for activity and gentle sustained motion. My job? Restore more motion. Pluses? I’m sleeping better because I’m not living by an alarm clock.

Assignment for your day? Come up with one small, specific thing you can do for YOURSELF that will help you feel better even briefly or just a tiny bit, or give you some info about fibro that you didn’t have before. DO IT!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
570
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
^ Well said, Ann Reid. couldn't have said it better myself.
It's vital to each individual to be your own advocate and researcher. No one else can do it for you and as hard as it is, it's the only way to have a chance at managing this syndrome and feeling better.
 
Top