Palindromic rheumatism

EmmaBenn

Hi I’ve been suffering with this for 16 years, I’m 40 now. And I feel that the lack of knowledge and research available for this disease, by doctors and websites is infuriating.
It seems to be pushed aside like a common cold compared to flu.
The agony and struggle we suffer living with this disease and being fobbed off with co codamol and naproxen.
It’s not only the pain it brings but the lack of you’re immune system, leaving you constantly fighting infections, abscess’s chronic fatigue and depression.
I’m crying out for help and support from anybody, to at least acknowledge the crippling struggling it puts on our lives.
Is anybody else suffering from this and finding it so much harder CoS of the lack of the complete lack of knowledge and medical impact It causes.

SilverSpots

I understand.

I was diagnosed with this in 2005, and I am also 40.

I feel I was only treated seriously when I progressed to RA - at that point I was transferred to be managed by the RH team, and I was offered Hydroxy and later Methotrexate.

I still get crippling flares in the joints not affected by RA, but these are much less now.

Are you under GP or a RH team?

Picasso99

Hi!

sorry to hear your experience. This resonates a lot for me too.

just joined the forum, I’ve had symptoms for about 13 yrs, official diagnosis of palindromic rheumatism last year - first thought was psoriatic (but no psoriasis), inflammatory more generally or was it reactive following a bad bout of salmonella as a teen. Feels good to know, I guess… but the unpredictability of flares is so hard and the fatigue next level.

my ccp marker is negative and bloods are ok so I keep working through triggers - weather and specific foods are my main ones. I’m not on any meds and try to manage it holistically.

How are getting on with things at the moment?