Fibromyalgia Action UK
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Constant pain what is the test should I go private

Hi everyone.

I am going to see my doctor tomorrow for fibromyalgia

Am in constant pain in my shoulder blade then my arms my back legs I feel fatigue he seems to be getting worse and I find it difficult to walk now due to the pain in my back my left arm shoulder blade cracks and my spine also makes cracking noises I find it difficult to get dressed because of my left arm hurting so badly do you think or is there a test that I can have done to say that I have this as I'm finding it difficult to get around and lift up things or even hold a cup as the pain in my shoulder blade runs into my arm into my fingers sometimes it's difficult to hold a cup will they see me do you think for this or will I get to see a specialist of any sort all I seem to do is take pills to town relieve the pain there doesn't seem to be helping too much I also feel it in my knees hips ankles too

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Sorry about spelling as am doing auto spell.

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Hi

I did go private for a bone scan it was very expensive £3700 a rheumatologist price will vary from depending on experience & area I saw lead consultant £280 pain specialist same I live in the south I payed for trigger point injections in my back shoulder blades I had 26 £1900 it did not work they are available through rhum.pain specialist on nhs so maybe if you could afford an appointment with the lead rheumatologist he can see you private and recommend trigger points or physio you can then explain I could afford to see you but I can’t afford test and it’s up to him to refer you through you go a Rheumatologist could be 6 wks or more a pain management 3 months your gp seems to have you in limbo he can write a letter to who you decide on & you will be seen in a week

I was so desperate I did it that way but not always worth it a p manangment have physios hydro pools warm pool that helps enormously nhs

Don’t be frightened to push your gp to make thinks happen it is your Quality of life that matters

Sam x

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hello crynear stal l really think you should get your doctor to let you have a full body scan, that near enough tells you what is wrong. you should be allowed a scan on nhs. just have to be firm with doc. Mind if you can afford to get scan privately it will be much quicker then you can return to your doctor armed with your scan. every thing seems to be such a minefield now wether to go private or NHS Also wondering how it works part private and part NHS, if it gets complicated.

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Have you seen a rheumatologist at all, as they usually do the diagnoses, has your Dr suggested fibromyalgia, I doubt if you'll get a body scan on the NHS these days unless it's an emergency, good luck

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Do you think I should go private first then back to my doctor x

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Your Dr can refer you to a private rheumatologist, he'll have a list and make the appointment for you , and your results will all go back to your Dr, that's what I did as I couldn't wait , I saw him within a week, good luck

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Hi Crystal. I saw a private Rheumy but that was because my , now very ex G.P, was telling me it was all in my head!!! It depends on how you get on with your G.P. If he/she seems to be on board with the Fibro diagnosis then just ask for a Rheumy appt.If its months down the line Perhaps you could go for the initial diagnosis privately. Once you have it ask for a referral to a pain clinic. Best wishes

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I initially went to my GP, who just seemed to be making wild guesses ( but that's my GP, not saying yours will be the same) One of my worst symptoms at the time was breathlessness so he referred me to a respiratory clinic ---- 7-8 month wait. During the wait I had private blood tests done ( Blue Horizon, about £100) which showed low B12. I joined the Pernicious Anemia forum on here and with advice, treated myself. So many of the symptoms disappeared, it was wonderful.

Eventually saw respiratory dr who was very thorough--- full body scan, 45 different blood tests, breathing tests, heart check. Everything was ok apart from slightly raised ANA, which he queried as connective tissue disease and referred me to a rheumatologist. I was told another 8 month wait. By this time I wasn't feeling well, exhausted, head and neck pain, able to do far less even though I was still doing B12 injection once a month. I booked an appointment at a private Rheumatologist, (£220) sent all my blood test results ( hospital sent me a copy if the ones the rest. dr had ordered) and questioned her on the possibility of Lupus ( which is what I suspected) She diagnosed fibro and wrote to my GP. I eventually got to see the NHS Rheumy who diagnosed same.

I don't know if my GP would gave acted on the private drs diagnosis though, I didn't bother to see him.

If you start researching private Rhematologists check their specialities. Some specialise in things such as osteoporosis. I found one in Bath ( 100 miles away!) who had published papers on both Lupus and Fibromylagia.

Good luck.

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If only your Dr had sent you to a rheumatologist in the first place you'd have saved all that trouble , when I was first Ill with pain etc my Dr referred me but I asked to go private as there was a waiting list, I don't know if people know that your Dr can refer you privately you don't have to search around yourself, I saw a rheumatologist within a week who diagnosed RA, I developed fibro years later, again diagnosed by a rheumatologist.

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Ah, but I live in Devon, aka The Land that Time Forgot ! Nothing happens here and certainly nothing quickly. Dr refused to refer me back to dermatologist who'd categorically told me to return when my skin flared as she needed to see it then. GP refused and prescribed a cream over the phone --- she'd never met me and my skin had never been examined at the surgery.

It's the weirdest place I've ever lived.

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Oh dear, I thought deepest Wales was bad enough lol. 😃 I've been waiting the result of a scan since last June 😳

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I went private - waste of time. Saw rheumatologist on a friday before Bank Holiday big mistake he was obviously keen to get away and couldn't be bothered. Paying doesn't necessarily mean better treatment! He did however write to my GP suggesting various tests which were carried out on the NHS eventually. I saved hard for that private appointment and was very disappointed.

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No I wouldn’t it up to u cause they will only tell u what we no there is no cure

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