Despairing

I'm in absolute tears as I have just spent 30 min with my Rheumatologist and he's told me to stop Benepali as it clearly hasn't been working (though the CRP is within normal range now). My hands and left hip is swollen + several other places (noticeably), and yet he's sent me home with a leaflet on Fybromyalgia ...?!? Oh and I'm having another bone scan so he can see what's going on. I feel hopeless, ridiculous, doubting myself - what exactly IS wrong with me?!? The diagnosis keep on changing. 😞

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I am sooo sorry that you have to go through this. I can't imagine how you are feeling. However if it is thought there may be a better fit for your symptoms it is helpful that you are possibly on the right road to some help that will work for you. Fingers and everything else crossed that this is the right move for you. X

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Thank you for your compassionate reply. I think you're right in that' is how I have to look at it. 😊

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Good luck we will all wish for your best outcome x

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When they change things you do feel desperate. I feel for you. It might be another condition and the bone scan will show that. Maybe that treatment wasn t the right one , if you have swelling but your inflamnation is normal then it could be that plus something else. Hang on in there x

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Yes, I need to touch ground again and trust a clearer picture will emerge as yet more tests are done. Thank you.

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It seems quite common for a diagnosis to change several times.

I think that several people here have a diagnosis of fibromyalgia alongside one for RA or one of the other inflammatory arthropathies. Sometimes the fibromyalgia is diagnosed before and sometimes after the arthritis diagnosis.

That's no help to you right now but I hope that some people can advise you what they do to manage the FM if that is a co-diagnosis for you (unclear as yet).

And, I don't know what to hope for you for the bone scan (presumably an MRI)? I can't wish bone erosion on anyone - and that's what the drugs are targeted to prevent.

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REALLY helpful to know that I'm not the only one experiencing change in diagnosis. Thank you. 😊

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Hi Roostermum.

I Hear You!

I've been in tears too today . !!!

My Enbrel really not helping me , nor the methotrexate , or the supplements .... 😥 .......

I don't think he (my rheumy) believes me as how bad I feel .....anyway ..

Don't mind me , "got it bad tonight" ......

Hang in there.... most of us know what you are going through......your not ridiculous, don't doubt yourself , and there's always hope ...😊

Hugs to you ,

🌸🌺

Take care

Karen x

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Bless you. Sounds like you're encountering mega frustrations yourself. Thanks for your kind words and receive some for yourself. Yes, hope for better days is SO important. 👍

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Me too benepali not working For 3 days its been worse.

.pain swelling fatigue.

waiting to see my rhuemy.take care xx

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It's rotten isn't it... spoke to my rheumy-nurse this morning; she explained that my Rheumatologist isn't saying I haven't got RA, but rather that I possibly have Fibromyalgia on top of the RA, which makes a lot more sense though it doesn't exactly help me.

Hang in there; as long as your Rheumatologist is actively looking for answers and treatment etc, it at least means things aren't standing still, but that your situation may change for the better in certain aspects. There's hope and I pray you'll grab hold of it today. ☀️

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It does leave you feeling desperate sometimes when the rheumatologist is calm, distant. He/she appears uncaring and disbelieving while you are raging trying to express how awful you feel. But it is often their way of coping with all of us with our emotional response to the pain and alterations to our life. They are needing to keep their emotions under control so that they can look carefully at the options and try to find the best way forward for us.

You know how being in pain and distress messes up your own mind, so it would do the same if allowed to when you see one person after another with pain and distress. The only way of coping is to be a bit distant. They are people too and may just have had another three or more people before you in the same awful state.

I don't know if that helps others, but it helps me to think that when I come out from a consultation feeling that the health professional has not understood my anguish.

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Hang on in there. You are in a process and it can be long-winded and frustrating. The right solution for you WILL be found, so keep fighting. Unfortunately this is for life and it doesn't stay the same. I had 11 good years and now many ups and downs, but I do trust the medical team as long as I keep them informed and ring the help-line. The wrong drug can be worse than no drug, but your situation is being investigated, it seems. Ring them a few days after the bone scan and be a polite pest, it will work.

Thinking of you and wishing for a quick solution

Michele

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Thanks so much for your advice.

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Hi there, Sorry you feel so upset. I know exactly how you feel when drugs don't do what we hope so much that they will. Like me, I hope you will find the right diagnosis and drug to help you very soon.. Stay positive. x

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Bless you. Yes, I will stay positive and I feel a bit better today. ☀️

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Thinking of you xx

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I really feel for you, I know it is upsetting when your rheumy doesn't seem to believe you, but I think that they do. As everyone knows this is a complex disease and take a long time to get thing right for YOU we are all different and what works for one person may not work for another. Isn't it in your best interest to find out exactly what your illness is and be given the right meds than carry on with the wrong ones. Stay strong and try not to worry to much as stress can have an impact on you. Please take care of yourself in the meantime. X

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Bless you! And thanks so much for those words. I do agree with you and I see things a bit differently as I have 'calmed down' a tad...😉 Yes, I am indeed all in favour of a proper diagnosis. Spoke to my rheumy-nurse this morning and she relieved my fears and confirmed that this was a very normal decision for the Rheumatologist to take. She also highlighted what you wrote that RA is a complex thing and several other diseases overlap or are very similar.

Thanks for your response.

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So sorry roostermum, this is clearly very distressing.

Do you feel the Bene was working for you even marginally? If not good riddance. if yes then tell rhuemy that you want to stay on it till they have another firm route to take. That's what I would do.

D

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No, I had absolutely no benefit from the Benepali- in fact, I would say I wasn't getting worse.

But he's being very thorough my Rheumatologist and I trust thinks will be clearer after the bonescan. 😊

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Huge hugs xxx

Jan

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Hang in there. A diagnosis is not always easy for a rheumy, as so many autoimmune disease/conditions present very similar. It is not uncommon for a diagnosis to change, especially with time, and sometimes other underlying disease may be found. I know its frustrating not knowing, as knowing can give us comfort, in the fact we know what we are dealing with. Uncertainty is very scary. If the Benepali wasn't working then that probably has your rheumy questioning their diagnosis and what to treat it with. Sounds like he/she is doing due diligence by sending you for bone scan, this can rule out...or rule in bone erosion, if you have bone erosion then likely your dealing with RA, if not it could possible be something else or a different form of arthritis. So sorry you are dealing with such uncertainty, hoping your rheumy gets things figured out soon.

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I agree with you; 10 out of 10 for my Rheumy for his thoroughness. I have more peace today and believe things will become clearer. Thanks so much for your encouraging reply.

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Hi, I'm new here and just wanted to send you a big hug. It's so hard when you don't actually have a diagnosis or even when eventually you do get one and you doubt it or the Rhuemy doubts it.. I'm trying to get the courage together to post about things but I just seem to get upset when I try and describe it all. I am feeling better than I did in January though and hope you start making progress really soon too

Clair 😚

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I certainly receive that kind hug! Getting upset and angry when things plainly aren't right, is both good and healthy... I swore like anything after I got back home yesterday ( I usually do NOT swear) and that' in itself helped me shift stuff a bit. I was non the wiser as to what was/is going on, but I felt healthier emotionally, if that makes sense.

Don't stuff it. Sometimes you need to have a go at writing things down in portions as issues rarely all surface all neat & tidy on the first attempt.

Blessings and hope for the future.

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I don't blame you for having a good old swear. The air has been blue on some occasions here too, I've been so angry at times. I think not knowing what the problem is sucks. They've diagnosed me with RA but I've got lots of other autoimmune stuff rumbling so more tests.

Rest when you can and hopefully you have enough strong painkillers to take the edge off to keep you going until they give you a proper diagnosis. Could you get a second opinion at this stage?

Ah Thanks, I will post. I need to make sense of all the mess to get it down in writing. I'll break it into chunks like you suggest, thanks.

Take care and be strong and I hope things start becoming clearer and less painful soon x

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😊🤗🎄

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Hello Roostermum.Try 30/500 Co-codamol and Aspirin.It may reduce your pain and swelling.Also i found Diclefenac is very good.I take these drugs for severe arthritis in my left hip.

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Thanks so much, will give it a go. 😊

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