Fibromyalgia or arthritis depending or what Doc???

purplesparkle

well after seeing one of my GP's today (my daughter pestered me to go because of bad headaches, worse dizzyness, feeling sick & loss of appetite) and basically got told that if the tests come back from the rheumatologist as negative then they will diagnose me with Fibromyalgia! Even though one of the rheumatologist told me it probably isnt but that was when they were thinking it was inflammatory-I know I keep saying this but why is it all so confusing????

Also I have been so certain that I really do not want them to say I have fibromyalgia (sorry to those that have it) because a few years ago a orthapeadic (spelling???) consultant told me that some Doctors don't believe in it and I can't get the fact that my Doc told me a few years ago that there wasn't anything wrong with me and I should get on with my life (it was a locum that started the ball rolling a few years ago by sending me to a consultant and physio!!!!!

Thanks for reading x

flossy47

That sounds so familiar to me. My original gp told me just to take painkillers and there was nothing wrong with me. Next one said I had fibro then I saw a locum and she referred me to the rheummy.

CJHunter

Oh that old chestnut, get a job u will be fine..... yeah heard the cr*p they come out with too.
i know i keep banging on bout it but u can asked to be refered anywhere in country, google Dr Foster and Guys hospital have some great specialists in this area. get refered.
ask your GP to do this asap.

all the best.xx

happyhibee

I'm so glad to have found you guys. I've had every symptom of fibromyalgia for over 2 years and it's getting increasingly worse. My GP completely dismisses my symptoms although has now referred me to a sleep clinic. Guess that's something! Nobody knows just how debilitating a painful/exhausting condition is (can't say what that condition is seeing as I've not been diagnosed)! Did you guys have trouble being diagnosed? Thanks so much for being there!

happyhibee

purplesparkle wrote:

well after seeing one of my GP's today (my daughter pestered me to go because of bad headaches, worse dizzyness, feeling sick & loss of appetite) and basically got told that if the tests come back from the rheumatologist as negative then they will diagnose me with Fibromyalgia! Even though one of the rheumatologist told me it probably isnt but that was when they were thinking it was inflammatory-I know I keep saying this but why is it all so confusing????

Also I have been so certain that I really do not want them to say I have fibromyalgia (sorry to those that have it) because a few years ago a orthapeadic (spelling???) consultant told me that some Doctors don't believe in it and I can't get the fact that my Doc told me a few years ago that there wasn't anything wrong with me and I should get on with my life (it was a locum that started the ball rolling a few years ago by sending me to a consultant and physio!!!!!

Thanks for reading x

That seems to be such a common response from a GP! I also saw a rheumatologist who said I dont have rheumatoid arthritis because I dont have swollen joints. I was then offered no further tests - I am now aware of the "18 point" test which I mentioned to my GP - who basically just ignored me!! I hope you get well soon....x

purplesparkle

Happyhibee-I know how you feel, my GP was great until my bloods came back ok and then told me to get on with my life! But I have to say all the consultants & professionals at my hospital have been great and have done every blood test possibly & thats where they recently found my Vitamin D very low! Can you tell me more about the 18 point test-is that the same as the rheumatologist telling me I have 20 joint tender points????

Also with fibromyalgia do you have bone & muscle pain or just muscle????

CJhunter-I will keep that inmind but I have to say apart from my GP everyone else are good-it's more me not wanting them to say Fibro!


Flossy47-what did the rhuematologist say-did they keep what the GP said (Fibro) or have you been diagnosed with something else & if so can I ask about what tests & there outcomes????? If you don't mind!!!!


Thanks everyone, What would I do if I didn't find you guys xxx

elnafinn

happyhibee wrote:

I'm so glad to have found you guys. I've had every symptom of fibromyalgia for over 2 years and it's getting increasingly worse. My GP completely dismisses my symptoms although has now referred me to a sleep clinic. Guess that's something! Nobody knows just how debilitating a painful/exhausting condition is (can't say what that condition is seeing as I've not been diagnosed)! Did you guys have trouble being diagnosed? Thanks so much for being there!

Hi happyhibee

I have heard of others who have fibro also having RLS (Restless legs syndrome)/PLMS (Periodic limb movement disorder). So being referred to a sleep clinic may well be a good place to begin in getting some help. RLS/PLMS can be an extremely painful/exhausting condition. I can well understand if you are feeling quite desperate and I am very sorry.

Elna x

flossy47

My rheummy took one look at my hands and told me that I have early inflammatory arthritis. Sent me for loads of blood tests which all came back normal as far as I know. He also sent me for several xrays. Think they caught it early enough for it not to have done too much damage yet. Had to wait for the blood results then was given sulfasalazine which I've been on for about 8 months now.
I think I have also got OA in my shoulders and my neck. Rheummy did tell me that it was possible that I have also got fibromyalgia but this has never been confirmed. Unfortunately I can't take painkillers so I have had to put up with the pain.

LesleyAnn

Guess I got lucky with my last GP who took one look at my wrists which were inflamed did some other tests and said he was sure I had RA. He did a batch of tests and said when they came back negative it was evidence that I did have RA. Apparently RA gives negative blood results. It's a form of arthritis that is diagnosed by discounting other diseases as well as other forms of arthritis.

I was more than shocked as I was sure I had a persistent pulled/sprained muscle/joint. I worked as a manual machine operator in a factory and thought I had hurt myself, muscle deep and it was flaring up. So RA was a bit of a shock to me.

He also said that as my joints reacted to the medication he gave me it was another thing to confirm RA as these tablets only work for RA.

I also had x-rays of my wrists and knees which were the affected joints at the time.

Two years on when none of the medications could help me for more than a month or so at a time he referred me to the Rheumy Clinic at the hospital. I had to then go through all the same tests and exams that I went through with my GP as they discounted other diagnosis/diseases until RA was confirmed. Eventually it took six months and a deep bone scan where I had myself scanned head to toe after being injected with dye to highlight inflammation.

Diagnosis confirmed I was given a disease modifier on top of the anti-inflammatory and pain killers I was already on.

A year later I was diagnosed by the Rheumy as also having Fibromyalgia. So I can definitely tell you that while they have some similar - sometimes darn near identical - symptoms they are two entirely different diseases and can be diagnosed easily by a Rheumy with some specialised tests/exams. The tender points testing being one of the best indicators. I remember getting examined many times by putting pressure on points of my body but didn't know the speciality of this part of the exam. I was used to having my tender points pressed in examinations.

But I do know what you are saying about some Rheumy/GP's out there. My specialist who I hadn't seen since the first hospital appointment retired and the specialist whose list I was put on was the type who didn't care much. He wasn't interested in what I had to say as the patient and basically stuck to his own snap diagnosis.

The first time I saw him he took my large file into his examination room and I had to wait over 40 minutes for him to come back out and call me in. Upon entering he obviously hadn't even looked at my file. He asked what medications I was on, something on the top page of my file, ticked off the meds and then did an examination. He jerked my left leg wrongly and caused a flare up of my spinal cord. I have congenital spinal deformities which resulted in the biggest part of my hospital file had he looked. He then after jerking around my limbs and poking/prodding my spine and joints then said he thought I had a slight back problem, I then pointed out I was born with spinal deformities as well as a curvature and the scan/x-rays in my file on his desk could tell him all about them. He absently nodded and referred to back x-rays and a physiotherapist.

I went back a year on and he said, "Remember I diagnosed a slight back problem last time you were here?" I couldn't believe it, I corrected him the year before and the proof of my original spinal diagnosis over 20 years earlier was in the file he obviously still hadn't read.

Needless to say I had no confidence in a specialist who didn't listen to anything I said or even bother to skim read my file which has more x-rays, scans and test results on my supposed 'slight back problem' than he would ever need.

Regardless I was relieved when he retired and I was passed onto my current specialist. While he has a heavy accent, he actually listens, doesn't force my joints/spine when examining me and actually seems interested in my health.

Maybe a GP or specialist who actually knows/acknowledges Fibro as well as knows about RA would be a better route. Ask for a second, third, fourth and even fifth opinion. Don't be pawned off, you know your in pain and something is wrong. Make someone listen and eventually you will get the help you need. I know as when my spinal deformities began to impact me in my early teens the GP who was partnered with my doctor kept pawning me off with excuses like, I was too young for back problems, it was a urine infection, he diagnosed three of them in less than a year including the third over the phone without seeing me at all.

He even began to insinuate that either it was all in my head, I was lying to get off school, and similar. He even had me doubting myself. Eventually my aunt went with me and I saw my own GP and she examined me finding the curvature of my spinal and referred me to the hospital. One x-ray later and I had the proof I was not only telling the truth but I did have several spinal problems which were just now impacting of me and I had been born with them all.

So persistence helps. If my Mother and aunt hadn't been so sure I was not only telling the truth but I was actually in severe back pain I would never have got my diagnosis or any type of help and Goodness knows where I would be now.