Getting to see a Consultant

Does anyone else have difficulty in getting their GP to refer them to a specialist? I'm sorry it is a long sage, but I just don't know where to go now.

I had pain from sciatica, arthritis and tendonitis over many years along with episodes of bursitis and pain and tenderness that was undiagnosed. I also had sleep disturbance throughout my life which I knew related to my childhood experiences and their effects - as I trained as a psychotherapist and had years of personal therapy before I understand the links between my symptoms and history. After a bad fall 4 years ago I asked my GP to refer me to the rheumatologist which she did and she also referred me to the Sleep Clinic to check I wasn't experiencing sleep apnoea though I was sure I wasn't. When I finally saw the rheumatologist he confirmed I have hypermobility syndrome, fibro and arthritis. It had felt like I had to go through a maze to get a diagnosis.

Since then I have coped without meds or input from specialists though I have been in pain throughout the period. I struggle to find a way to sleep because of shoulder tendonitis and pain in my hips which I am fairly sure is arthritis triggering sciatica and I get myofacial pain which locks my muscles even when I'm just watching tv. During winter I find it very difficulty to straighten up. Every day my knees are excrutiatingly painful when kneeling and sometimes when walking up and downstairs, they seem to give way as do my ankles, my hips hurt frequently every day as do my shoulders, and I get tenderness at the fibro points and also where I broke three ribs during the fall.

In March I asked my GP to refer me to the Pain Clinic but she said they would only give me medication which she could do. I also asked her to refer me back to the rheumatologist and she said she would but suggested I might try chiropractice for the sciatica but the first five sessions each left me in acute sciatic pain for days afterwards and now I have read that chiro is not recommended for people with fibro as it trends to trigger that - so why did the GP suggest it! An experienced physio who I saw privately after the fall said never to stimulate the nerves when an area is already painful and inflamed! The GP also referred me to a physio - I thought that was for my shoulder but when I got to the appointment it was for the ankles which the physio put down to weak muscles - the chiro later said my ankle muscle strength was extremely good and better than hers... After a month I hadn't received an appointment with the specialist so asked another GP when I saw him about something else, he said he would chase it up and if necessary refer me himself, another month passed and no appointment came. I chased it up with the GP surgery and this morning they have told me that the physio is assessing on behalf of the muscular skeletal team and will refer me if I need it. I feel as if I am going around in circles as although the physio is good she says she is only allowed to assess and treat the specific thing I have been referred for - which in her case is the shoulder which she says is tendonitis, whereas I wanted to see the specialist in order to tease out what's going on with all the rest - why my hips are so painful, have a scan etc, also talk to him about referral to the pain clinic as people with fibro locally say they were offered a 6 week course with yoga, pilates, pain management techniques, cognitive therapy and info on meds as well as meeting other people with fibro - I only found out about the local group by chance years after being diagnosed...

Sorry, I am ranting on, but does anyone have any advice?

Sue

6 Replies

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  • In short SHR apologies for shortening your title

    It is a maze and I wish I could give you some advice that would counter balance it but I can't. I'm under 4 different consultants/therapists at the minute for a wide variety of complaints including physio/hydro. I also have hypermobility syndrome which is at severe level along with my Fibro and can empathise with you greatly regarding the joints snapping, cracking and popping along with weaker muscles. In my experience it is the tendons which are more problematic and I also have spurts of bursitis in my elbows and tendonitis in my thumbs/hands................ very painful. I also have plantar fasciitis in my feet :o

    For years I've battled to get diagnosis and since getting it I'm still back and forth to hospital appointments and don't appear to be getting any further forward. It takes far too long for things to happen. For instance I have had to cancel my Hydro placement twice due to ill health.............. can't have physio until I have built up some balance, strength and stamina which I need the hydro for. Podiatry need me to be more active before they can help me properly so I need the physio :o It's rotten I know but I think sometimes it's a fight we have to walk rather than run. Your personal description of yourself could in fact be mine and so I'd like to say you're not alone with it.

    I can't really help you apart from offer you some friendly support and give you a huge soft fluffie hug SHR and hope that you manage to get the referrals that you need. I would try chasing it up again and then if still not getting anywhere ask for a new referral with respect to your other joints too. I know it means going through the system again which is exhausting and often demeaning but it may be the only option.

    Like you I have had umpteen nasty falls over the years and never bothered to get myself checked out and now I'm older and wiser I wish that I had :o The last one saw me fall backwards 3ft down off a stage and land in a sitting postion very hard on the floor banging my coxix really badly...................... it hasn't even been x-rayed!

    Access to treatments etc in my opinion is becoming more difficult for the long term /chronicically ill/ disabled.

    I wish you wellness and hope that you get the help that you need sending healing soft fluffie hugs to you

    :) xxxsianxxx :)

  • Oh thanks, it's nice to have a reply. I just needed to let off steam. Everything you have written could also apply to me, the plantar which the physio (young lad) who assessed me said it was the fibro though I knew it was plantar and still is, the not getting anywhere... Yes, I have had lots of more minor falls - the first one was 7ft head first down our terraced garden, landed on my ribs on a wall and then crashed onto the path below. Asked for referral to the falls clinic but never got one. We live in an area where services are under pressure and seem not to like middle class women who go in asking for things. I was told - well what can you expect at your age - when I first went and said about the joint pain, but some days in winter I can hardly stand in the supermarket, I always need the trolley for support anyway otherwise I seem to sag into my hips (what an idea) as if there is no muscle tone to hold me up!

    I'm sorry you have the very same things too - I do wonder whether there is some kind of pollution in the air that has made so many of us all have exactly the same symptoms, something that hits the nervous system and alters chemical balances, maybe. OOOh the fall off the stage sounds really painful, there is nothing worse than falling in that kind of way, ouch!"

    Yes, I agree getting treated is more difficult for some kinds of problems - but my husband has chronic renal failure and his care is superb, also similar with cancers and heart problems, etc locally. I think it is just the things that are less easily measurable - fibro, mental health, stomach and bowel problems that don't show on x-ray - that are fobbed off or treated less seriously, which I have to admit they probably are but the quality of life measure often makes them more serious. It's ironic, my husband has a blue badge and is registered disabled but at the age of 71 still works four days a week, can walk a mile though does become tired, and drives 30 miles each way, whereas I can't walk a few hundred yards without being in pain, topple around with vertigo which causes me to fall, and would find it impossible to work - thank heavens I have reached retirement age!

    Thanks for caring. It is good to know some people understand even though they can't help, it does feel better than thinking it's all me and feeling sorry for myself which I have a tendency to do.

    Hugs to you too.

    Suex

  • You are my twin {{{{ Sue }}}} I'm sure of it that 7ft fall sounds very nasty, I reckon the vertigo has something to do with the falls too.................... yes I also have that (genetically inherited) along with the HMS :o

    I weeble about most days :)

    Thanks for the hugs and always listening my friend xxx sian

  • Secondhandrose, I read your post with great interest and the replies with even more, in the vain hope that there might just be a glimpse of an answer, but alas no.

    Like you I have had various problems over many years and countless trips to GP's, hospitals and physios only to be finally diagnosed with fibro last year. Along the way I have had bursitis in both hips, torn ligaments in both knees, plantar fascitis, sciatica, chronic neck pain, frozen shoulders, tendonitis and a lot of things put down to wear and tear and being overweight. It would be wonderful if there was someone who could look at your medical history and realise how many of these things are linked and common in lots of people.

    Like you I cannot get a referral to a rheumatologist or a pain clinic despite repeated requests. I am waiting for another physio appointment to deal with a shoulder problem caused by a fall down stairs. At the time of the fall I was seeing a physio for fibro and by the 2nd appointment she signed me off as there was nothing else she could suggest but she couldn't look at my shoulder because that wasn't why I was referred. I had hydrotherapy which was great but after 5 sessions I was told I knew what I was doing and so was signed off despite the fact I had to then buy the equipment I needed to repeat the exercises in an ordinary pool, which is always full of screaming kids and is freezing, thus making the pain worse!

    I have recently been granted a blue badge, which is great as I am lucky if I can walk 30 yards without needing to stop and am in contant pain, despite being on a cocktail of drugs which simply take the edge of it. At the grand old age of 55 (just!) I am being retired due to my health, I would be already if my GP hadn't taken 3 months to write a 2 page report. Honestly, if we wrote this down and tried to get it published folk would laugh and say it wasn't real.

    Thankfully we can come on here and know that there will be somebody who understands and can truly empathise with what we are going through every day.

    Sending gentle hugs and good wishes to you both, Linda.

  • Hi secondhandrose

    I am so sorry to read that you have been going round in circles trying to get the help that you need and deserve. I can say from personal experience that GP's only tend to refer for specific problems such as i.e. hip pain or shoulder pain etc. So in all good reason I do not understand why your GP cannot refer you for whatever specific reason it is that you need treatment for?

    I am currently seeing a physio for my coccyx problem (I do not have one) and she has now extended this herself which is what many do as they then have their budget to use (money follows the patient) on whatever it is that needs treatment.

    This system can go wrong however, many years ago my wife was sent to a physio for back pain, an then any other referrals needed to come via the physio, so when her GP wanted her to go for an MRI the physio said NO!

    I eventually managed to sort this out (and I haven't ruled out legal action) as my wife was then diagnosed with Primary Progressive MS. So the system does not always work. The only way to make it effective 100% of the time is to know exactly how it all works? And this may mean taking legal action which most people do not want to do!

    Good luck with sorting out the referrals that you need.

    Ken x

  • Sweetheart, your story sounds like mine exactly. Please change doctor's you need a compassionate doctor. You also need to be seen at the pain clinic. It makes me so mad when doctor's drop the ball and cause more suffering than is necessary. Hope you feel better, I hate what you'er going through!!! xxxx Mitzi

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