To continue the fight or give in?: My rheumatologist is... - NRAS

NRAS

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To continue the fight or give in?

cliffhopper
cliffhopper

My rheumatologist is again brandishing the dreaded fibro diagnosis, (which she's ruled out twice and which doesn't fit my symptoms), she's taken me off hydroxy because I had patches of what looked like psoriasis, so now not on anything. I've had an MRI of my SI joints, which showed some bone oedema (but apparently not enough for a diagnosis of PsA because a lot of it was old). Have got enthesitis in both Achillies and patellar tendons along with various joint pain. The only thing that shifts it is steroids. I don't know whether to just give in and accept the fibro diagnosis or to try and see another rheumatologist privately (number 3), but I don't know if I can face more hoping for months for some sort of help, and then being kicked in the teeth at every appointment. Any thoughts would be gratefully accepted.

11 Replies
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I have ra and fibromyalgia and more, and I don’t care what they want to call it, it sux. I’m grateful for the things I’ve learned help me. Ice, heat, rest-even when I fight against it. Pain meds, the usual ra meds and a whole cupboard full of “try this” meds.

I’m grateful when they don’t flare at the same time. Acceptance is key for me. As is asking for help when I need it. That’s been a tough one.

I also have amazing love and support and that is huge for me.

I don’t see a big choice in “continuing the fight”. As long as I’m breathing I’ll be doing whatever I can to be as able as possible.

I believe my mental/emotional state is just as important as meds to keep going. Also not easy but worth the effort.

In the past three years I’ve lost my husband and father and had a lot of change! But I wake up each day and make the most of what I can.

Think like you just accept had most of Ra meds nothing helped for long and then all the apps and bloods, I'm just sticking low dose steroid ice packs when needed and strong painkillers and having a rest now an then but I think it's quite normal at my time of life, just do what makes you feel good one day at a time 🙄

I will take whatever is offered, do whatever is suggested and buckets to the idea of giving up.

J

So so so disappointing for you!!!

Wishing you something between ‘the fight and giving up’

Big hug

Hidden
Hidden

Could you ask to see a specialist in psoriatic arthritis? PsA is a swine to get diagnosed...I know because I have it. It took several years just to be taken seriously by GP!

Apart from psoriatic nails, I have pretty mild psoriasis. Although I did have some awful rashes in the beginning. Achilles tendinitis (bilateral) was a real stinker.

If you can get a specialist I would highly recommend it. I'm pretty sure my PsA has got so bad due to a lack of treatment early on.

Certain foods make things worse for me, so you might try a fodmap diet to see if it helps? Onions, garlic, peppers and sugar are definite triggers to a flare up for me. However, I do also have IBS. Bowel issues common with PsA.

It's tiring battling on. I'm now finally on bio similar drugs after a pretty rubbish time. Too soon to say if they're helping.

If you feel you might have PsA you probably do. Keep pushing until someone listens.

Hidden
Hidden in reply to Hidden

I also had fibro flung at me. I'm afraid I told them to shove it up their jacksie... Only more politely. I knew I didn't have it. They still tack it on to my diagnosis every now and then. It was tacked on after an awful reaction to sulfasalazine. I blame a rather unpleasant GP for this add on.

Since they are now taking the arthritis seriously I just ignore the the fibro add.

louise-a
louise-a in reply to Hidden

way to go. x

louise-a
louise-a in reply to Hidden

Sanp , why do we have to get so unwell before getting diagnosis, hla postive decades ago . Bowel issues too. XX

I have had crps for 10 years and also suffer with dystonia,several types of arthritis, lymphodema and several other conditions. All these conditions give me chronic pain 24/7 and it never goes away!! Several conditions are hard to diagnose,so perhaps you have one of these. Hope you get some relief soon..xxx

Don't accept it. I keep getting that flung at me too, usually by registrars who have no idea dn want me in some sort of box. I have a diagnosis of PsA at the moment after being diagnosed with sero neg RA initially. I have never had psoriasis and have no skin issues, but they did that so I could go on cosentyx. I have stopped taking it as it has caused me to have 11 weeks off work in the past 12 months with chest infections. So I have just stopped taking it as I have no leave left. But I digress. Stick to your guns. Just becuase your disease has not properly shown it's face, doesn't mean you have fibro nor should you be fobbed off because they are too lazy to figure it out or admit they don't know.

PSA can be very hard to diagnose and this really puts the sufferers under strain, pysically and mentally. Hydroxy is not always a good drug for these patients so I can see why it was stopped. I had to carry the fibro diagnosis for many years so I really understand how you feel. If you respond to steroids it inflammation pure and simple. Lou xx

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