Hello properly, Thank you, and probably Goodbye! - NRAS

NRAS

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Hello properly, Thank you, and probably Goodbye!

JudyW5
JudyW5

I just want to say Hello as I haven't introduced myself yet, although I have commented on some posts. I was diagnosed with RA about 18mths and have been going through the usual drugs to find what I can tolerate and what might work. (That's a long story which I won't share just now).

I also wanted say thanks to you all for your honesty in sharing the bad times and the good and for all your encouragement of one another. I have been so blessed reading all of these posts.

But now i have to say goodbye! This morning when i thought i was seeing the nurse, i ended up talking to my rheumatologist (who i rate very highly) and the upshot of the conversation is that i probably don't have RA atall but Fibromyalgia (which is a very strange beast but seems to fit my symptoms better). There is still some possible inflammation in my wrists so that will be investigated with an MRI, so he hasn't discharged me all together. But he also didn't think he should give me steroids which i was expecting to have as a next step after having bad side effects from all the other drugs.

So i am in a state of shock, feeling that i have been sent away to manage the pain and fatigue i am experiencing on my own. ( referred me back to the GP with recomendation to refer me to the pain management clinic.

I do hope there is a forum like this one which gives me some hope and encouragement out there.

13 Replies
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Do hope you find another good forum. Interesting that they are using MRI to detect inflammation....we were having a discussion about different types of scans very recently...I find it all rather confusing...

Hiya, you've been through the mill unfortunately but do you get swollen joints? I ask this because fibromyalgia doesn't cause any swelling anywhere, there's a lot of people on this site who have RA and Fibromyalgia together, lol, loads of us.

There is a great site if it does turn out as fms and not RA,

Take care and I hope you find the answers to your sufferings.

I am really sorry to hear that you have been treated with toxic drugs that have not been right for your condition. I am really afraid that many are in the same boat since diagnosing the right AI disease in the beginning isn't all together straight forward. I would really be happy with your new diagnosis. There are alternative treatments, nontoxic that have proven to be quite effective, LDN is perhaps the most potent for FM. Lots of information ldnresearch.org and ldnscience.org. I wish you better luck this time:)

We do have a fibro site here so don't feel you have to leave because you don't have ra. Best if luck with whatever decision you make.xxxx

I am very sorry to know that you have been taking the drugs for so long and being told now you might not have RA? Do take good care whatever it may be.

Rheumatologists treat a range of conditions. There are about 200 different forms of arthritis, RA and fibromyalgia included, and a rheumatologist is supposed to treat all of them.

I would suggest that you stay on this site as well, just in case there is another turn of events or additional symptoms. My rheumatologist tried to change my RA diagnosis to fibro and I absolutely knew he was wrong. Almost a year after that, my ANA is now 1:640.

Philip
Philip in reply to shareasmile

It is a good thing to get what is right for you, Fibromyalgia does not cause swelling at all.

I had trouble getting a diagnosed

In the end he said why do I need a diagnose, vi said because I will get the right right treatment and I can then know what to do. L0L. I'm at that stage of life that nobody will away that easy and sometime its important to say to the person in a white coverall. L0L

This post is 3 years old ?

Deeb2908
Deeb2908 in reply to Mmrr

yes I think the issue with this site is old comments don't get pushed back, so if someone comments up they rear again. I try to check when written before I reply x

Hidden
Hidden

There is a good forum and I hope you’ll find it useful.

I am in the opposite position. I was dx with Fibro by a rheumatologist in spite of my protestations. Two weeks ago this was overturned by a neurologist who has dx Sjorgens, probably secondary to a second primary autoimmune condition. He has also identified a probable neuropathy involving a herniated disk at L5. Extensive imaging and further testing will confirm.

I am glad to have been proved right in terms of my condition but much of the treatment will be similar with extra meds for diversity of symptoms.

I think it’s important that a consultant in the correct discipline investigates your condition. I am furious that a rheumatologist can just dx fibro without reference to any other physician. Only an alert GP referred me to a superb neurologist who sorted me out.

That said, my condition can have what label it likes. I can barely walk, have chronic muscle, joint and nerve pain, profound fatigue and a poor QoL.

I wish you well and hope that you get the treatment you deserve. I’m surprised that the rheumatologist didn’t prescribe pain meds as well as referring to pain clinic. That is within his remit and is the usual procedure.

Take care

Hidden
Hidden in reply to Hidden

PS. So sorry I’ve only just noticed this thread so old. 🥴

Hope you’re feeling much better by now.

Hi Everyone, yes this post is ages old. But thank you for your responses. I have made significant progress over the last three years but have to limit my activity so that about half my day is resting. That does help the pain.

With regard to pain meds, I was already on significant meds for a back condition so that's why the reumatologist didn't prescribe more. (I now have dihydrocodeine during the day with amitriptyline and pregabalin at night) I have been able to reduce my medication slightly because of treatment on my back (radiofrequency denervation) and specialist back physio to help with posture and walking.

So as far as pain is concerned it is pretty well controlled but life is curtailed. I have to be ruthlessly positive with myself to combat depression, fatigue and the pain.

However, raising this correspondence again has t reminded me that many conditions exist together. I plan to go back to my GP to investigate the possibility of having psoriatic arthritis (as i have funny things happening with my skin) or the very least investigate the neuropathy pain in my hands and arms, which seems to be increasing.

I may come back here to post some more. I hope in the meantime that all your pains improve - that is to say they diminish significantly.

Au revoir.

Judy

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