Rhumatologist experiences ??

Hi

I have been refered to a rhumatologist as my Dr believes i have Fibromyalgia.

I have read online that many Rhumatologists have no interest in dealing with Fibro patients and feel that pain clinics or neurologists are more appropriate for patients 'like me'.

I am now wandering why i have been refered to a rhumatologist, what exactly he/she wil do and how annoyed they will be if i am diagnosed with fibromyalgia!! lol!

But seriously reading such negative info about referals to rhumey's and Fibro patients has put me off going and im quite worried about the app now.

I would be really grateful if any of you would mind sharing your experiences regarding rhumatologists/referals as i feel really unsure and alone if im honest dealing with all this. I have tried my best to convince myself that it cant be real as all my bloods were normal (for inflammation) but the same 2-3 week out of every month my shoulders and hips burn, ache wake me constatly when i try to sleep, i can hardly dress in the morning cos im so sore and stiff work , kids everything is made harder as a result, even trying to sit comfy in the evening and rest in one position!! I cant escape it nor do i talk to anyone cos i feel like a moaning hypochondriac. I cant win and now i feel like im going to be scolded at by a rhumatologist....agh! Perhaps its just me.

Please let me know good/or bad how you got on .

Thank you for reading :-)

9 Replies

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  • I had my app with the rheumatologist a month ago. It was great. I went in armed with a coloured "pain chart" that I made myself which im not sure helped but it made me feel better about going. She was really good and very gentle. In the end I was diagnosed with fibro and hypermobility syndrome.

    It helps to keep yourself calm, and if you can, take a partner or a friend who knows how much you're suffering.

    Good luck xxx

  • I have had good experiences with rheumatologists - they have always been very helpful to me, and a lot of them have a special interest in Fibro.

    What you have to remember is that it is not their place to scold you or to be annoyed with you. They are public servants paid very well indeed to look after our health, and they have no right to dismiss you rudely!

    If they just say that they can't help, then no harm is done - if they are rude, you really should complain in order to save others the same trauma.

    In truth, there is not a great deal that medical men can offer us at the moment, tho' there are drugs and therapies which will make things easier. It's also important to exclude any other problems you may have, such as arthritis or synovitis.

    Chin up, and don't let these powerful professionals intimidate you!

    Love Moffy x

  • Yes I have worn out three rheumatologists , finally the last one realised I had osteoarthritis as well , I was not impressed I was only 44 , but he was great and got me aids round the house and special moulded to fit insoles, but even after that he said there was nothing really more he could do that my GP couldn't and discharged me back to my GPs care and I am on meds for that as well as fibro , so if after you get a diagnosis of fibro off a rheumatologist and they discharge you don't feel bad it's just that your GP if he is fibro savvy can treat you just as well and refer you to physio or pain clinics

    VG x

  • i have a great Rhumatologists i have been under him since 2009 and still see him every 6 months and if my pain gets so bad i have an sos number i ring and get to see a doctor when needed. i think you should ask to be reffered to another Rhumatologists.

    xx

  • When i was diagnosed by a rhumatologist she moved my joints around, pressed on a few points, tried to press soles of my feet (i could not feel anything as they go numb) then she told me i had fibro and handed me a booklet. that was it. she had me in and out in under 10 mins.Have now asked for a second opinion from a hospital in London i go to for another condition - everyone is entittled to a second opinion if you are not satisfied with the first diagnosis.

    Good luck.

    xxxxx

  • Hi , the rummy I saw diagnosed me within minuets after touching me. Not all rumys are the same. X

  • Hi Anyaz, it's the luck of the draw, I'm afraid. My last rheumy up in Bucks was great - a good listener and very kind. My current one down here in Devon says that as long as I manage my condition sensibly, he feels no need to see me except on the occasions when I need steroid injections in my knees for my osteo. He reckons that GP care is quite sufficient for FM.

    In that regard, I'm very lucky to have an excellent GP with whom I have a laugh when my various conditions conspire to make life extra awkward! My GP writes to the rheumy occasionally with requests/suggestions, but he treats tends to bat her off :-/ I'm determined that he will recall my face in future as I gradually "train" him into my requirements lol!

  • I have seen two rhummys, and both were very disinterested in seeing me as a patient and hindered my treatment majorly. I found a neurologist and pain clinic to be most effective for me. The neuro I saw did not want to see me, he wanted me to go back a rhumatologist, but after reading their correspondence (and seeing hos biased they were against me) he decided I was better off with him even if fibro is typically out of his field.

    To answer your question, yes. SOME rhummies are like that. But as you will have read, Many aren't. So I think your best bet is to see one, and if he writes you off, see another, and so forth. Hopefully your GP may be able to recomend you to a rhummy who is prepared to treat fibro patients. If not, maybe there is a local fibro support group whom you could contact for a recomendation.

    I am a strong beleiver in seeing multiple specialists though. For example, a rhummy or a neuro to try and treat the cause, while also seeing a pain specialist to try manage the symptoms. A combination like this should cause too much difficulty with "treading on toes", but always be upfront with you specialists that you either are (or are intending to) see the other specialists and why. Co-ordination of care between the two specialists is essential in these circumstances.

    Regards,

    John

  • hi, i was diagnosed last summer after a lot of frequent visits to the docs and blood test after blood test. when i got finally referred to the rhumatologist they took x rays of my hands as they thought i had reynards and almost deffo FM/CF. when i went back for the results they basically said yes i have it and they dont deal with it the doctor does so go back to them and basically got the get on with it vibe!! since then i have tried several meds and none have helped, i take gabapentin now but last time i went to docs she asked if helping ,i said no not really in this cold damp weather, so she put me on repeat and gave me zapain too, i also felt like this was a go away and stop bothering me kind of feeling, so i hurt all day but dont want to go back:((

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