Fibromyalgia Action UK

Seen by rheumatologist

Hi everyone I was diagnosed 6 weeks ago by my doctor with fibromyalgia and after seeing my rheumatologist he too said I have fibromyalgia.... I feel really deflated as that's it .... i won't be seen by anybody else now other than my GP... I'm struggling to get my head around this as I still can't walk unaided I need crutches and feel I have to just get on with it on my own .... maybe I was expecting to much but I was hoping to have atleast an MRI scan to rule out anything else ... has anybody else had a MRI scan .... I was quite positive before but now feel really low .... just want to walk properly and get back to work ... any advice would be very welcome xx

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I've had xrays and ultrasound but no MRI

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Have you not been referred to physio ?

I was diagnosed about the same time as you and felt almost like grief . I am still mobile and pain although annoying is not debilitating. I am to see the physio at beginning of oct and been offered pain relief options but not going to take those at the moment. Trying to take each day as it comes . Hope things get better for you and your gp is helpful x

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Thank you .... I've got an appointment with my GP In a couple of weeks so will definitely ask about physio

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Hi Flower47, I was diagnosed last December and left just as you have been. It's not the best situation to be left in. My GP did refer me to a pain clinic but I'm only recieving phone calls. She also gave me a number to ring for CBT.

When I rang them I had to answer several questions. At the end of it he said my GP should have prescribed anti depressants.

I've had to find my own OT by ringing my county council who is disgusted that my GP hasn't refered me to a PT so she says she will do it. She's also quite angry that I've not been refered to the falls team as I do fall quite a lot.

It's an uphill battle just trying to see the people who can help me. And on top of this I cannot get myself to hospitals etc as I'm wheelchair bound as I really cant walk far at all.

I've not had a MRI scan and there's been no mention of this by anyone.

I hope you can use what I've said to help you get the help you need quicker than me. I would strongly advise giving your county council a call as they have sent my OT, and although I've only met her once she was great.

Hugs to you lovie xxx

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Thank you Falabella for your advice that really helps ... isn't it awful though that you have to fight to get the help you really need... xxx

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It is awful. At the beginning I had no idea what to do or what to expect. It's through friends and family that I've learned little bits to get the correct balls rolling.

Hope you're ok today xxx

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Hu hun- I think you need the support of a physio if you use crutches. ask your gp to get you onboard, I personally swear by hydrotherapy which has made my leg muscles stronger I am working on upper body now.

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Hi caz-54 thanks for your advice 😊very helpful xx

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I had multiple MRI's done but this was before I was diagnosed. I also saw a physio after my diagnosis. If you aren't happy and you would like further testing done I would really advise that you speak to your GP about it. However, if you do have Fibro like you said it can take a while to adjust to this diagnosis and accept it xx

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Thank you xxx

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Ask to be referred to the pain clinic where ul c a pain consultant pain nurse and physio. They were useless for me but they might help u. Best wishes. Ive found i need to be proactive in my recovery and open my mouth and ask for referrals etc

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Thank you it's definitely worth a try xx

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You are very welcome it's terrible that we need to fight for everything but that's the unfortunate reality. I wish u all the very best 🌞😊

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Thank you and wishing u all the best too xx

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😊🌞😊🌞

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I had an MR done after my xray showed a lot OA in my lower back this was after my lovely GP made me an appointment for me to see a specialist. I have always had back pain but it was getting worse over the years and she wanted to see if there was any changes causing me more trouble than just the fibro. It also showed other spine problems this was done last year. So if you think you need further testing you should talk to your GP. X rays show very little to be honest. The MR showed I had a few other little things that was not seen on the x rays. xx

Mo

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Thanks for your reply mo ... hopefully my GP will be kind and hear my worries ....you take care xx

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Hi there

The way you are feeling is extremely common when being diagnosed with Fibro after waiting a long time for a diagnosis.

I don't know if that helps? I have seen so many members say what you have said over the years I've been here.

You've been given lots of good advice so all I can add is that your GP can refer you for CBT Cognitive Behavioural Therapy. Many people find this very useful. It is a taking therapy.

Having a good GP is very important. I hope yours is good.

There are lots of things your GP can refer you for but you will probably need to ask for them rather than wait to be offered.

I hope that made sense!

Wishing you much peace

Lu xx

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Hi Lu, nice to see your post hope things have settled for you. Welcome Back, hugs x

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Thank you for your lovely reply... hope you have a great weekend xxx

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Hi, I was diagnosed (begrudgingly by my doctor to shut me up) about 12 years ago with Fibromyalgia. I have come to the conclusion that doctors use this diagnosis to cover their lack of knowledge. It doesn't matter what pain I have or where it is always Fibromyalgia according to the doctors. But, here's the thing, Fibromyalgia seems to me to be a name for an ever extending group of symptoms, used to stop the patient pushing for a correct diagnosis.

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Hi wendzmars I agree totally ... I would be accepting of his diagnosis of fibromyalgia if he would do tests to rule out anything else particularly MS...

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And depression, makes me so cross

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My walking also has got really bad. I walk like a snail and can't kneel as my knees lock which is frightening I find. Physio hasn't helped at all and I have never seen a Consultant only at the pain clinic who hoped physio would help me and bereavement counselling as my husband died last year. I have recently just moved house which was a huge job being on my own and my family all working during the day ,and I know the constant packing and trying to move boxes about has made things so much worse. My family however worked their socks off to move me into the new house which is going to be better for me all round as it is so much smaller but I have hardly been over the door due to my walking. Physio gave me knee exercises which made the pains worse (fibro doesn't do well with anything repetative). She thought I had damage at the back of my knee and my GP who was very nice knows my knees and back are giving me so much bother and said there could possibly be arthritis going on though didn't refer me to anyone. Things got so bad before the move that my family told me to go back to the GP and it was a locum I saw who thinks I possibly have tears in my cartilage and is sending me for an MRI scan. I asked if my back could get checked also but he said he wil send me to the Orthopaedic clinic for that so I suppose though I dont like attending these things that I may get some answers. My friend who is a nursing Sister says it is all very well getting a Fibro diagnosis but other things should be ruled out also and has been at me for years to ask for a scan. This is the worst mobility wise I have been and as you know it really gets you down when you can't do what you used to. I hope you get some answers, sorry for lengthy message. hugs x

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Oh my word bless you you really have had it tough I feel for you ... see when my legs stopped working 6 weeks ago that was when my doctor diagnosed me with fibro so I think this is why I struggle with the diagnosis... for me I would like other thing ruled out ... you take care my lovely & wish you well in your new home xxx

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Thanks so much you take care also Xx

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Did your doctor not do blood tests to rule out everything else before diagnosing fibro? Mine diagnosed, sent to rheumatologist who confirmed. I'm surprised your rheum didn't order blood tests, mine went over my results carefully. But I to am in the same boat, just treated by my gp, who is great, but do feel that all pain is now treated as 'just fibro'. I wish I had had mri or xrays, this all started with a fall and break to my coccyx, and that was never ever investigated with xray etc, pain in sacro illiac joints cos of it, just given steroid injections and now all blamed on fibro, so bloody frustrating. And annoying when asked on esa/pip forms for medical evidence.

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Yes I have been given blood tests that came back ok but seeing my type of work ( I'm a self employed cleaner) they would of looked at other reasons other than fibro why my legs aren't working properly....think I am maybe just struggling to accept my diagnosis being fibro ...thanks for your reply ... hope u have a good day 😊xxx

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