Hi All. I am new to all this so please bear with me. I have been struggling with Fibro symptoms for nearly 3 years now, I have recently had an MRI of neck, shoulders and head and a full body bone scan.....all of which have shown no abnormalities. The problem I am facing is my GP does not believe that Fibro is real..... Its a made up conditon only diagnosed to keep people quiet......that is what I have been told by my GP.... I know my symptoms are real, i feel like death most days, I have seen a Neurologist and Rheumatologist both of which have discharged me after finding nothing wrong.... I really need advise on where to go from here, do I change GP practice and hope the next one understands and recognises Fibro. Any advise would be gratefully received.
Struggling to get diagnosed... - Fibromyalgia Acti...
Struggling to get diagnosed...
Don't give up, there's gotto be something wrong anyways it may be so something else , look into blood tests a endocrinologist . Get everything tested , my cortisol was incorrect for a morning test , my calcium was low , I have inflammation in my blood. Start with basics ,, sorry to hear you are low ,, x
TY for reply. they have ruled out any form of arthritis.... blood test shows i am deficient in vitamin b12 and D...It all started 5 years ago after a blood transfusion following a "C" section... I feel like I am going nuts. No-one believes how bad I feel.....TY for taking the time to reply.
Oh dear, most of us has been there, it makes you feel worse
When people like that don't believe you
There are thousands of people with fibro, don't give up
I think some one on here will tell you that you have to
Become an expert yourself on fibro,.
Change your doctor it's a very reel thing fibro. I think it's worse
Than most illness as we can't control it with medication. My husband
Has RA and not in as much pain as I am as his in controlled.
Your GP is a bit of a dinosaur he's not up to date with his reading
I don't understand how the rheumatologist can say there is nothing
Wrong, did he exam you, I know that they can't be bothered a lot of
Then I think it's because it's not life threatening, but it is a big life change
Don't give up you need to find a GP who will listen to you.
I myself would complain about your GP but I know that is stressful.
Hugs Viv
It almost makes you wish your GP would get fibro, doesn't it? Rather a wicked thing to wish for, but it would teach him a lesson if he had to suffer like you do. He definitely is a dinosaur and needs educating!
It probably would be a good thing to complain to your practice manager if you can find the strength to do that!
Meanwhile, have a look at the site to see if there's any info. which might help you:
Take care and keep your chin up.
Love ... Moffy x
Hello, I know where you are, I have had fibro for 5 years with out a test or anything, I self diagnosed it and have since changed surgerys and the new doctor told me I was on the medication, and I was taking some pain killers which react with each other to cause bleeding of the stomach...I am awaiting to see a rhymotoligist, but on a 26 week waiting list, which has been increased due to one of the doctors leaving.....I been told to go private but its finding the £250.00 for the consultation..x
Hi All.....I have finally managed to get a GP at my practice to listen to me.....I have to go back in 3 weeks time and he will do the pressure point test thing...has agreed that I do suffer from alot of the symptoms......we will see........I am pretty convinced I have it, too may things I suffer from to say I dont......Pjmain, going private really wont help cos any tests you need will cost extra, I done that last year and still have got nowhere.......I had to get referred back to the private consultant o the NHS for the tests and he still discharged me after finding nothing wrong with me.............Plz do not waste your money despite how desperate you are.......
Yes, I self-diagnosed, I had to because no-one else was trying to find out what was wrong with me, and yes, I was treated like a nutter and to an extent some members of the medical profession still do. Do you know about positional Cervical Cord Compression, also known as PC3??? Look up positionalcordcompression.com Or google Dr. Andrew Holman Seattle PC3. It may be that you have a normal straight neck MRI scan but if you have a scan with your neck flexed and extended it might show that you have a narrowed cervical canal. This causes 'stroking' of the cord on movement and with it dysautonomia, the autonomic nervous system is the most powerful system in the body and it influences all of the body. I couldn't get this MRI scan done in UK and was told I didn't need it, but I came to Dubai where I can order my own MRI if I pay for it, and would you believe, I do have cervical cord compression. Accordingly to Prof. Dr. Holman, 71% of people with FM in Seattle have PC3. It is an important diagnosis because it can be helped by either surgery, neck manipulation or Alexander Technique plus and you can get back some of your quality of life. Actually the best thing about having the MRI done was that I now have something in black and white that I can show to those doubters to show that I do have some pathology that is likely to cause the symptoms I have been describing. Presumably you don't have enough tender points for diagnosis as you have been seen by a rheumatologist, but Prof. Dr. Holman says that is a very unreliable test, and in Seattle they use things like the tilt table test which is much more accurate. There are also other tests such as measurement of your brain activity during sleep showing difficulties in getting into Stage 4 sleep, and measurement of Substance P in your spinal fluid, also tests such as pressure tests associated with brain scans which show the brain reacts abnormally to pain. Unfortunately the NHS don't offer any of those tests as far as I know. Also there is a condition called Chronic Widespread Pain which is like fibro but without the tender points and they too have a large proportion with PC3. However, even when you have all the info and you self-diagnose, you then meet the problem that doctors don't like patients who know more about their illness they the specialist doctor in the field does and they can set out to demean you. But keep persevering, and change your GP if you get no-where. On the fibro association website I think I saw a list of fibro-sympathetic doctors. Wish I lived in Seattle! Good luck x
Newly diagnosed...a few questions!!
opinions please? Get me to the rheumatologist! 
Struggling SO hard 
Advice on body jerks
