Just a question

How many people have been sent to rheumatology after/or to be diagnosed with fibromyalgia ?

I myself was diagnosed by gp after a blood test in may of this year my doctor has been very nice about my situation contacted physio , occupational therapist etc just dont like all the messing around with medication as also have oesteoarthritis, degenerative vertabre, scoleosis And two off my discs removed and 4 inches off the bottom of spine fused together, still havent saw rhumatology 😣

41 Replies

  • Morning I was sent too rheumatology, with suspected RA and after some blood tests,x rays and a bone scan I was diagnosed in about 3 months

  • Hi, The gp sent me to the rheumatologist straight away when I was complaining with stiff joints etc. It was the rheumy that diagnosed my fibro. My gp is quite good but he hasnt done much else since my diagnosis two years ago. It was me who had to ask for a blood test recently as I was feeling really tired. It showed low vitamin B12 so now Im having injections. I think it is left up to us to find what works for our own needs. If you want to see a rheumatologist then maybe you should ask the gp.

    Take care


  • Sometimes i think people slip through the cracks but yeah the more you say the more gets done so get moaning lol

  • Yes I agree -caz Gp,s are so busy these days I find I have to tell them what I need help with and who I want referring to, I went to gp yesterday with a problem of peeing too often, I think I have a small prolapse-she didnt even look just said she would organise an appt with practice nurse- that wont be until nov 17th,I had to go to gp wearing tenna pants so thats going to keep me from my weekly hydro and going anywhere, I have appt with Orthopod on Nov 1st and rheumo doc on 6th so they will also be made aware of my current dilemna, dont want any accidents during my consultations!!!

  • i was diagnosed by rhreumatologist-based on symptoms-crawling skin and trigger points,did not diagnose by bloods.that was in 2005,GP referred me back in 2012 because worsening /new symptoms-rheumatologist didnt consider anything else.Will ask GP to see him again as 5 -6 years since last seen,

  • My dad was crippled with rhumatoid arthritis but havent sent me although have very similar illnesses my dad had including copd ive got all sorts of thoughts in my head thanks for replying and good morning

  • Yes my mum had Ra and copd as well.who were you sent to about your back etc ?

  • Orthopedics ive had this ( my back ) since 16 years old just more been added on over years the last time in hospital was diagnosed with osteo and degenerative vertebrae and was told no orthopedic specialist would touch me so you will understand lost a-lot of faith in doctors also other non related health issues

  • Aw I feel for you.you have a lot wrong😟

  • Thank you

  • Thanks david might just do that

  • Ther isent any reason too send you too a rheumatologist, if you have your diagnosis. People who are diagnosed by a rhuemy are then sent back too there Gp for it too be "managed" by them

  • Like what you said, I was diagnosed by a Neurologist whose specializes in ME . He said there is no point sending me to a rheumatologist coz he already knows what's wrong with me. I don't know the procedure for fibromyalgia alone. it took 7 long years to diagnose me but I also go diabetes with the ME. In Cornwall we only have one main hospital. I managed to get my diagnosis up hear in Wigan.

  • Yes once you've got your diagnosis,be it from a rhumy or neurologist it' normally managed by your Gp.I have fibro,crohns disease and diabetes,hope your doing OK today

  • It is half your battle my doctor is from Poland i think maybe thats why hes so understanding about condition hope you get some ease from your symptoms n sorry for late reply was chill axing at caravan no phone signal ☺️

  • No worries i just thought i would ask the question as everyone seemed to be diagnosed by rheumatology rather than family gp

  • Caz, for 10yrs I have had problems with all over pain, tiredness++, weird random pains e.g on my head, burning tongue etc etc-had zillions of blood tests, seen by rheumatologist who said I was fine, been on amitriptylene and now gabapentin with no diagnosis-only a “it’s probably fibromyalgia that causes all your symptoms”

    So although I’m no further along with a diagnosis I know whatever is wrong is life annoying rather than threatening, it’s frustrating too.

    My answer these days is to walk, do yoga, Zumba -try to get fitter on the good days and lots of rest on the bad days-what I find worst is when I get up and finally get mobile (usually takes an hour) and am having a good day I can suddenly be smacked down again by excessive tiredness or sudden IBS!

    I suppose we all have different stories and ways of dealing with ill health x

  • You really need to find out if you've got ME or not. read up on the hummingbird foundation. if you have that then overexertion, to much exercise can kill you.

  • Morning1 After my GP diagnosed me I wanted to have my condition confirmed, Confirmed I have it full on.

    Take a long time for an appointment from them, there really good, they ask how they can help, I broke down and said , I couldn't cope with manual work, tears streaming ,Horrific pain,,,, I to have slipped discs, Osteoarthritis ,

    To find out what was happening on my spine.I was then sent for MRI scan, it confirmed I have one disc out off three slipped discs that's really bad, and I have arthritis from the neck to the base off my spine

    Wish you well, and good luck,, xxx

  • Its horrible the pain can be horrendous i find my temper is very short due to pain just want to curl up most days yeah i had mri done they told me it was because i was tall for ten years then i got scan and a doctor that listened and hey presto was rushed in for surgery i feel your pain hope you have a good day x

  • I understand your temper being short, I thought I was the only one, feel like a nutter some times when I snap ,then feel sorry after for anyone on my track ...

    You got surgery, Has it helped you ? xx

  • I think if i never got the surgery i would have been bed ridden or using a wheelchair due to lack off movement. my sciatic nerve was wrapped around prolapsed discs so when i had surgery it was redirected so have pain all the time it just varies on how intense it can be, the recovery period was 3 months for one month you are not allowed to sit you have to lie down or stand have they offered you surgery ☺️

  • Sorry to hear that, and no I'm not going to be operated he said, He obviously Knows his job,

    I have to just put up with this,

    I'm not working at the moment , So scaird to take anything on , base off my spine locks and I don't have movement in my legs, this terrible condition is doing my head in...xx

  • Mines was same no feeling from pain from my back to my toes hope your well today big hug

  • yeh not to bad the day, thinking of venturing out the door, its such a task to do, so many questions, no one to answer, do I or don't I go, I know I will feel different if I try ..xx

  • Thats all you can do is try enjoy your day if you manage to go but if you dont then try tomorrow big hug 😁

  • Mm snap! Snap snap snap! Oops sorry! Snap grr!

  • Its not much.but heres a ((((hug)))) for both of you.you've both been thru so much.I just don't know what too say😑xx

  • thank you much kindly,, :- )))) xx

  • We are still here fighting lol x thanks

  • You are an I take my hat off too you both☺ x

  • Do you know if this had been when i was first diagnosed i will admit i was ready to throw the towel in but after talking to people on this site i actually feel normal and its a great wee forum for support knowing your not weird, a physco or banging your head off a brick wall people talk back and understandbthat no two days are the same so thank you x

  • That's what its all about support from people who"really"understand x

  • Diagnosed by rheumatology. Then back to a disgruntled GP who then didn't believe in fibromyalgia. Seriously he just groaned as though I was being enabled by someone who ought to know better! It is the GP that holds the budget for referring to OT etc and who manages your day to day meds.

  • Yeah you think so. Xx

  • I had my diagnosis from rheumatology after various tests by a locum GP who finally took me seriously!

  • I believe rheumatology referrals are one of the most costly & with the highest waiting lists. Despite having obvious rheumatoid problems, inflammation in the knees, calling for fillers & steroid injections & drainage of infected blood from my balloon like elbows on several occasions.

    All these procedures have been carried out by my GP. I have never been under a rheumatologist since my diagnosis , by a previous GP 22 years ago.

    Many people were & are still given a fibromyalgia diagnosis purely because there's no apparent cause of symptoms or pain the diagnosis became one that basically meant "Hysterical Pain" , I think many DRS still believe that the diagnosis is an easy opt out. If you have fibromyalgia then x-ray & the involvement of a rheumatologist become unnecessary Unless there's physical symptoms.

    I don't think it's uncommon to be bypassed by the rheumatology department considering these points.

    Hopefully now high profile sufferers are coming out of the wood work more research money will go towards understanding the disease, because all the Tests done in the last decade point to it being a disease of the central nervous system, sufferers have up to 99 specific genetic mutations in common with each other.

    Until the medical establishment begins to be more responsible & more thorough than simple history & diagnosis via a points of pain chart, more people will suffer either the purgatory that is living with fibromyalgia & a health professional Who's experience & expertise fall far short of the necessary to aid them or worse still misdiagnosis. At a time when we are giving gabapentin & other drugs to "sufferers" drugs that were not designed for Fibromyalgia but to control epilepsy & the medical professionals admit they don't know why or how these substances benefit fibromyalgia sufferers , but what the hell let's mess with their brain chemistry anyway... It's a sad & disgusting state of affairs.

    Many true sufferers only way of coping is with medications of some form. This seems to often be a situation where analgesia is the backbone of treatment getting stronger as the patient suffers more. I've spoken to sufferers in the USA who are prescribed so much strong pain relief that they have to take a form of prescription amphetamine to be sufficiently conscious at her work etc.

    It seems strange a rheumatologist isn't the first point of call after seeing a patient you "suspect" of having fibromyalgia. When did it become usual for a GP to make a diagnosis? Why is that diagnosis not revised & explored, even when a patient shows symptoms that are not usual fibro symptoms or when the symptoms continue to develop or worsen? It all seems strange to me , which leads me to my belief in my first point "Money Money Money Money" & an idiotic idea fibromyalgia sufferers are usually hysterical women.

    Well I can testify I'm neither & I pity all those out there with this horrible illness, it stole my life. I hope some of you are lucky enough for new ideas to abound & old stereotypes to be popped in the surgical waste forever.

    Love & Peace

  • Yes i agree with what you wrote hope you get some relief from your pain it is very hard to get someone who understands so until as you say more research is done into this disease we will all have to battle on

    Peace and love to you to

  • I was diagnosed by. a rheumatologist who I went to see privately because of the long waiting list

  • Rheumatologist After years back and forward to hospitals and GPS.

  • I was diagnosed with fibro at the Rheumatoid Clinic many years ago and have since been diagnosed with PMR and also have various issues with degenerative spine and slipped discs. Pain wise I can sympathise but since being diagnosed with PMR and receiving treatment for that I have been able to stop other meds and mostly manage the fibro flares, with diet, additional rest when needed and lots of patience to ride out the flare... I know not easy! Its taken me a long time to work out that ignoring fibro does not work, it just makes it worse. Just wish there were better treatments out there that worked and fixed everyone.

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