Was I misdiagnosed?

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

Was I misdiagnosed?

Postby snowwhyte » Sat May 09, 2015 11:36 pm

After three years of pain and an initial diagnosis of a vitamin d deficiency I was diagnosed with fibromyalgia last summer by the rheumatologist. I was relieved to have a diagnosis but always had a bit of doubt because I have lost my faith in doctors and because my pain usually comes and goes in phases.
At the time I was diagnosed I'd started supplementing with high dose B12. Within a few weeks my Neuro symptoms vanished and my pain eased off. I was thrilled. For the first time in 8 months I was pain free (except for a bad leg which was a separate issue). My doctor didn't find a b12 deficiency when I was tested but I'd already been taking b12 when I had the test so that could have been off.
I started seeing a physio for me leg and started seeing a slow improvement. The rest of my pain stayed gone and I really began to believe that I had just been misdiagnosed and only had vitamin deficiencies. I was pain free for eight months but a few days ago the pain came back. Both my legs hurt, my hands and feet, my right arm is burning then cold, I feel sick and am tired. I am really hoping this is a temporary anomaly and the pain will go again soon but I am scared that it's back again. I feel like I've lost the pain tolerance that I built up last time and it seems somehow worse because I really thought the pain was gone for good. I'm trying to think what might have triggered it and what I could do to fix things but I am just waiting and hoping.
I know some people don't get pain free phases and I'm grateful for the time I was pain free but still I'm hoping I was misdiagnosed and the pain isn't really back for good.
UKFM Newbie
Posts: 6
Joined: Sat Jul 26, 2014 8:56 pm

Re: Was I misdiagnosed?

Postby Garyl » Sun May 10, 2015 9:44 am

I am B12 deficient and have arthritis also Fibro so you see it effects every one different, i have b12 injections at the moment quarterly and take vitamin D supplements also on a cocktail of pain relief but still have fibro pain, now have a enlarged spleen which they may want to remove, but i am going to resist as long as possible as would mean anti biotics daily for life.

Hope this is of some help
UKFM Member
Posts: 229
Joined: Mon Sep 09, 2013 1:45 pm

Re: Was I misdiagnosed?

Postby sue cooper » Sun May 10, 2015 10:52 am

Hi...you may have developed something called Reflex Sympathetic Dystrophy (RSD) it also goes by other names too. I have both RSD & Fibro. I developed RSD first followed some years later by the Fibro. I was told they frequently go hand in hand. My RSD developed after a bad fall where I damaged my knee made much much worse by the arrogant incompetence of our local hospital (under Morecambe Bay Hospitals!!!) Research RSD on the net and you might be ablt to find a link between RSD & FM relevant to you.
sue cooper
UKFM Member
Posts: 18
Joined: Mon Sep 01, 2014 3:17 pm

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 4 guests