Just despairing now...

Saw my GP today. He is furious and dictated a letter to the rheumy whilst I was there.

Diagnosed Sept 2016 with RA, blood positive also. Couldn't tolerate dmards and suddenly rediagnised with fibromyalgia instead by my rheumatologist though the consultant who oversaw the ultrasound on my hands insisted though they could not see inflammation on that day I definitely had RA.

Pain though is in my knees and elbows to the point I could chop them off. I begged for help. I was supposed to be followed up and put back on ultrasound list for my knees. Nothing happened. Instead rheumy referred me to physiotherapist as must be mechanical...complete volte face from what they were saying before. Both an independent physio and the NHS physio have now said symptoms wholly consistent with RA. NHS physio sent email to rheumy saying please see this lady she is unwell and I can do nothing as her symptoms are RA related. I heard nothing from the hospital. Two weeks ago an urgent referral from the GP was made and faxed over. I've heard nothing, neither has the GP. My GP says my symptoms are wholly consistent with RA and not with fibromyalgia.

I have been trying to carry on working because I had no option as rheumy started saying nothing wrong. Upshot....massive flare and now Shingles.

Everyone is agreed this is what you get if you are a problem patient. If I could have tolerated methotrexate no one would be questioning a thing...

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11 Replies

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  • I've been following your posts for a while and I'm just stunned at your lack of treatment and "care". Have you had a radioactive isotope bone scan? It's a specific nuclear scan and they inject you, then scan the entire body. If there is inflammation, it will show up. I lit up like a Christmas tree. This clinched the diagnosis for me and I know it's probably not freely available on the NHS but it can be done. I think, given all you've been through, this is something that should be considered, at least.

    I wish I knew what to say to offer further advice. Have you spoken to PALS and obtained their advice at any point?

  • I am so sorry to hear of all your troubles. Sounds like your GP did the right thing by dictating an immediate, righteously angry email. Sure hope it helps. What a crusher to now have Shingles, too. Sending prayers and hugs.

  • So aggravated with this post, because I relate to everything you've been through!

    I see myself from my diagnosis this past march until now. Why in earth would we ENJOY going to all these dr appointments? We ENJOY feeling aweful? ENJOY being in so much pain 24/7? My GP actually suggested I start taking Excedrin migraine for pain? WTF? Rheumy raises methaltrexate and Embral and prenisone... NO I'm not alright... and I'm so tired of fighting to have my voice heard

  • It is sad that we all seem to share such horror stories. I hear you, even if they do not. I also feel the same way. They seem to have lost their humanity. I understand it must be frustrating. To work so hard and get no results but imagine how we feel?. It is not their body. I have a sincere hope our young geniuses can develop an independent measure of pain. Like the sensors developed to transfer tremors.

  • So sorry to hear this. PALS is a good idea as is raising an official complaint with the hospital concerned. They hate the hassle & if you make clear you intend to do this it often prompts them to sort it out.

  • I agree with others - you are being subjected to an appalling experience of the NHS!

    I was diagnosed with seronegative RA in 2011. Then, when I too was unable to tolerate Methotrexate and 3 others, my rheum said I had "non erosive RA" and decided I should take nothing more for the time being. He was right that it was non erosive but I still had a very active disease process occurring which he and others failed to identify.

    It was clear to me by the burning pins and needles everywhere, issues with my balance and continued high inflammation levels in my blood, fatigue and worsening Sicca and Raynauds - that something systemic was occurring.

    I was then undiagnosed in a new hospital by a new rheum and, Last year,, rediagnosed with primary Sjögren's by positive ANA and lip biopsy in a third hospital by a third rheum. At last I was able to try another DMARD - Mycophenolate - which I've tolerated reasonably well for 9 months now.

    I do think you are right to feel it's your drug intolerences that are behind the change in diagnosis now. I'm glad you have at least got your GP and physio backing you all the way. I'm in Scotland so can't advise on protocol, but I think complaining formally is the only way to make progress. I've done this on 2 occasions now and it has helped me to be taken seriously at least. Best of luck with it all.

  • Sounds like cash strapped disease in the R dept. The minute you were intolerant to DMARDs the alternative is about 12k a year and that might not be what they want to hear right now.

    Keep annoying them. Make lots of appointments and never be afraid to talk back at them. Argue your case.

  • Is that the only rheumy in your area? Can you see someone else? I have had the same problem with a registrar so I made a complaint to the head of rheumatology saying pretty much what you are when she tried to fob me off and say I had fibro. I ended up seeing him privately as I was prepared to go down that path to get proper treatment. I now have had a change of diagnosis to psoriatic arthritis which actually aligns better with the issues with my back pain and nothing showing on scans in my hands and feet apart from some mild areas, but they are swollen and awfully painful. I was seronegative so I guess I will have this battle all the way along, Stick with it, fight for what you know is right and go to someone else if they refuse to treat you.

  • Hello Helzbells.

    I am glad you are getting the full support of your Gp.

    I think it takes tremendous strength to carry on . You are not being difficult : you have needs which need to be investigated with time and patience.

    Perhaps you were very unlucky to meet your rheumy on a bad day? Ask to be put under a different consultant? You have clearly been misdiagnosed.

    I think some of the trouble is that the treatment protocols are so narrow that if you don't cope with the usual drug treatments they seem to be unable to be flexible? And when in doubt then say its fibromyalgia its cheaper?

    Keep pressing them . Write to your Mp and complain about funding flaws which are directly affecting your health?

    it really shouldn't be this difficult should it?

    Please take care of yourself xxx

  • I fohnd the samet but after 3 yrs had a new registar rheumy dr she was great. I said leflunamide does take the edge off a bit but i needed sojmething exra as was getting worse could hardly bend fingers. She suggested Humira sso after all tests have had 2nd one yesterday 3what a difference yo me its a wonder drug and at last am getting my life back i cannot thank that dr enough the difference after only 2 injections is fabulous. Keep teĺling them you are not well you know your own body and are gettting depressed. I do hope u have some luck am thinking of you send heaps of hugs and xxxx Linda

  • I too have had severe allergic reactions to drugs . I was left for 6 months lady year and I wrote to PALS. I have been treated like royalty since. My clinic is excellent even though we are still trying to find a drug I can tolerate. Just failed on Humira now. Caused swelling in my neck and shoulders but Ifelt loads better. It has still been decided 2 stop it. My next appointment is in Sept and I am still taking prednisolone which I have been trying to reduce but pain may become intolerable.

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