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Anyone got any ideas about what I should do now?

I was diagnosed with RA in 2006 and later Fibromyalgia. Since then I've been on Sulfasalazine, MTX orally, Hydroxychloroquine, MTX subcutaneously, steroid injections. At the beginning of the year I was so bad I could hardly move, I was put on 4 months of Prednisone, and started on 50mg Benepali - which I was fine with. No problems with side affects, no problems at injection site. Everything started to ease then I had swelling in my gums and lips, and was told to stop the Benepali as the swelling was the start of an anaphylactic shock! It didn't feel like to me.

So I stopped taking it. That was the end of June. I waited for an emergency appointment from my specialist which was the beginning of September - who was new but who had the same surname as my old Specialist, but he seemed to be saying it wasn't RA it was Fibromyalgia, and he wrote to my Dr for higher pain meds to change brain signals, and said he was discharging me. Now I am on 2700mg of Gabapentin, 600mg Tramadol, 50mg Amitriptyline, 1000mg Naproxen and up to 6000mg of Paracetamol a day. I don't know whether I'm coming or going and I very rarely go out. If I do go out, I have to take a few less tablets a day or so before to be fully aware, then the pain worsens and I suffer from withdrawal symptoms!

So I emailed the Specialist (or a family member emailed on my behalf) asking how I could be on Prednisone and 50mg Benepali in June and nothing after that - and be diagnosed with RA for 12 years and constantly on medication for all of those 12 years, and then be told at the drop of the hat it isn't RA it's Fibromyalgia? He didn't reply. So I emailed again saying I had all my diagnosis letters and medication results, this time I was told he was away, and would reply when he got back. He didn't reply, but I got an appointment for last week. When I saw him, he seemed to me to be back-tracking. He apologised for saying I didn't have RA - he said he hadn't seen me in the past so couldn't diagnose RA however he stuck to his diagnosis of Fibro, so didn't give me any RA meds however, this time he said he would keep me on their list in case I should need to go back?!

So now I am at a loss for what to do next? I feel completely let down, I'm in pain, I don't know what's wrong with me, and in all honesty I'm beginning to feel what's the point of being here! I just want to know what is really wrong with me, and I just want the pain to go away.

Any suggestions

20 Replies
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Is there any chance you can change to another consultant? In the meantime can you have a discussion with your pharmacist....these days most pharmacies have a private room where you can get professional advice on the drugs you are taking.

Personally I took Amitryptiline for a few days & I was a walking zombie.. It does suit a lot of people, but not me.

I'm no medic but taking all that medication might be appropriate if you were feeling better, but as you are still in pain & feeling ill I would talk to the pharmacist, & ask his advice.

Some doctors seem to prescribe more and more meds, but forget to take the ones at the beginning of the list off the prescription.

Try to find another doctor....if this one insists you have Fibro...he probably won't back down...his ego won't let him.

Wish you good luck in finding a doctor who cares.

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Thankyou for replying. I agree I don't think he will back down, but I can't get my head around the fact that 4 months ago and for the last 12 years I've been diagnosed with RA - now I'm told it's not RA. Same symptoms, and messing about with brain signals isn't stopping the pain. I was on MTX for years and I initially had an old school specialist who said I had to put up with the side affects. I was so nauseous on MTX I sometimes couldn't get out of bed - needn't I have had to suffer all of this if it wasn't RA?

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Hello Annie,

It really sounds amazing how you have been treated by the medical professionals. This sounds exactly like a situation I would never want to see myself in. In other words you put your trust in a specialist who we know that has difficulties diagnosing exactly what your illness is about. Not enough tests are done to really make a diagnosis based on the whole picture because of different saving policies. You are given very hard meds hoping they will take away your symptoms but the responsibility of the followup is just ignored. Then suddenly you find yourself in a situation where you are in fact told that you have been receiving the wrong meds all along. Does that mean that you have been in fact jepordizing your health taking these toxic meds without really needing them? What have they done to your body? As a patient you are suddenly faced with a very stressful situation where nothing really makes sense anymore. I really do hope you will soon find a doctor who you can trust and get your situation sorted out. All the best. Simba

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Thankyou for replying. That is exactly how I feel. As I said to AgedCrone, I was on MTX orally for years and was told I had to put up with the side effects. It wasn't until I got a new Specialist (who was great and left) who said it's about the illness but also about the quality of life. For years there were times I was so nauseous I couldn't get out of bed because my stomach roiled so much. I was given sickness tablets that didn't work, and was on folic acid 6 out of 7 days, how much damage has all that done, and to now find out it was all in vein

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Here in France you can move to biologics if Mtx gives you too many side effects after 3monts. Don't understand that you had to put up with feeling so ill for so long! What was the situation with your joints and inflammation markers?

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It started with my big toe. I was told it was gout. Then I had problems with my wrists and fingers. When the gout happened a third time, I was sent to see a Specialist who diagnosed it as RA, which later became Sero-negative as my ankles started flaking and they said it was psoriasis. I never really paid much notice of markers although they were marked in a booklet at most bloods or appointments. The thing is, the results for my latest bloods are similar to what they always have been, and this is what I don't understand. I don't know who to ask, and my Specialist is head of the dept. so I feel no one is going to go against his diagnosis. My last Specialist was female, and had the same name as this Specialist but he's male, so I think they are related. In my head I'm wondering if a mistake or something has been made, and he's covering it up. Then I think logically and know this couldn't happen. So I'm back to square one - what do I do? Who do I ask? Where do I go from here? I know I can't keep taking this medication, and my GP upped everything on the say of the Specialist, but it isn't addressin what the problem is, it's just addressing the pain issues

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Have you had erosion in your joints? You have been diagnosed with RA many years ago so you probably have some imaginings done?

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I have in my fingers but apparently my feet are okay, except for my big toe and ankle which he said was osteo

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Oh dear! I would be asking for a referral to a new rheumatologist ASAP and a visit to your GP might help in between. That’s a lot of meds’ your taking and sometimes they clutch at straws as what to give you next just to keep the pain at bay. Obviously your condition, like mine is not controlled well at the moment,and sometimes I feel like the specialist let us down. I take steroids, morphine,tramadol,and paracetamol daily but only as low a dose as possible and I have just started Cimzea injections. I do understand what your going through as I was crippled with pain and couldn’t walk only 8weeks ago, it’s only the steroids that mainly sorted me out. Keep in touch! you’ll get there in the end.

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Thankyou for replying. It's so frustrating, it's your body and you know what you are going through, and you trust the medical profession, but I think I am going to speak to my GP next

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Hi Annie, I think that would be the best place to start! Tell your GP what you would like them to do for you!rather than what they gonna do for you. Get your pain and inflammation under control and you might start to feel human again, I wish you well and hope you get sorted soon, keep in touch. 🤗🤗

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Thankyou xxx

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Your very welcome! And always remember! we’ve all been there so totally understand how you feel 🤗🤗🤗

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Gosh Annie, what a journey. This Cocktail of medication are symptomatic in themselves alone. Make a double appointment with your GP to allow enough time to go through your history and ask for a referral to an alternative consultant. It's bizarre that your diagnosis changed despite 12 years passing. If this is the case you could even question on what basis your diagnosis was made and then conclusively changed. Many people, myself included can have multiple diagnoses, which have similar manifestations yet are all linked to the autoimmune disease family. I personally feel that you have been delivered far from adequate care and whilst I know it's not easy to confront and challenge, especially when you feel dreadfully unwell, you really deserve better. Maybe take someone with you who can support you in your appointment. Good luck.

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Hi Annie, I think you seriously need some answers re your situation. You have reasonable grounds to request another opinion from a new Rheumy even if that has to be another hospital due to your concern re specialist being head of department. You were diagnosed with RA , given medication and now it's not RA? Be assertive with your GP regarding everything. It sounds a lot of tablets your on without really knowing why! Remember, it's your body, your life! Don't allow anyone to not take you seriously. You can request copies of reports from previous Rheumy who diagnosed you and all tests/scans etc. I feel for you. Stay strong and determined to find out what is your actual health condition. Keep us posted - Suzie xx

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I would be taking my problem to PALS. Explain the problem to them, see if they can change you to another consultant for a second opinion.

Failing that, your GP for a referral to another consultant for a second opinion.

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I would be contacting my GP first asking for an urgent rereferral, put it in writing if necessary. Once that's done I would be off to PALS.

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Firstly you really need to report his behaviour.

If he can't be bothered to read the plethora of diagnostic tests you have already had and been diagnosed with RA, he shouldn't be practicing medicine.

You really need to see a pain management doctor who may be able to prescribe something better.

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oh no that's sounds awful, can you try and get your GP to refer you to an alternative hospital and Rheumatologist for another opinion ?

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Thankyou for replying . I could, but the other option is Shrewsbury, and in the news lately this is not a good place to go to! And I'm told they are sending their RA patients to other hospitals - although not sure if this is true.

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