Have you heard of Palindromic Rheumatism?

[TuscanMum]

Also know as Palindromic Rheumatoid Arthritis

I’ve got it ☹️

It’s horrible and very, very painful.

Yet another night awake and unable to sleep with pain.

It’s an autoimmune disease and in my case triggered by stress and pregnancy.

However nobody I talk to has ever heard of it. Ever.

People might say, oh I’ve rheumatism in my knee/hand/elbow

Sorry for posting in AIBU but I’d love to know if anyone has heard of it. I’d love someone to talk to who understands☹️

I'm now 64 and have led a very physically busy active life - not through exercise for the sake (or love) of it that some do, mainly just practical stuff; a lot of building/DIY, fixing cars, all that sort of thing, all with (thank goodness) very little illness or injury. I have kept reasonably fit but not excessively so and, frankly, hate doing exercise for sake of exercise but will happily do a very long physically demanding day's work f it is needed - and often it is. So, I'm not lazy, I guess is what I'm saying, and thus not overweight (5'8"/174cm - 168lbs/72kg)

6 Years ago, I retired, divorced and sold the self-built 5 bed (literally) house of my dreams and moved 500 miles away to a remote Hebridean island where I intended to build another house to live out my days surrounded by the sea and my 'projects'. About 6 months before the move (and with a lot of stress going on planning the move - sea containers and all - and still living with the ex) I woke up in the middle of the night with my first bout of what I believe is palindromic arthritis/rheumatism (tho not diagnosed as such - doc here had never heard of it). Having gone to bed completely normal, I could not bear the pain from simply the weight of the duvet on my left (i think it was) big toe.

In the morning I couldn't walk on my left foot due to the pain and took my toe to the doctor. He sent me off to hospital for a blood sample suspecting gout (despite the complete lack of other gout symptoms nor a gouty lifestyle) and, surprise! - no elevated uric acid. His diagnosis was a viral infection and prescribed some pain killers. The pain steadily reduced over the next few days and after a week my foot was normal.

So began a period in my life of irregular bouts of the same thing each occurring in completely random locations on one or other foot - tho I have never had it as bad as the first occasion. Fortunately, my bouts a relatively few and far between (once every few months or so), come on often within an hour - and often also stop as quickly - going from severe pain to completely normal. The periods in between are also completely normal.

I am guessing there is a trigger or probably more likely a combination of factors that act together as a trigger and it is interesting comparing my situation with a good friend who contracted myalgic encephalomyelitis/chronic fatigue syndrome at the age of 30 having spent the first 20 years of her life in photography/marine science and was an avid sea kayaker, like her Dad.

It is, sadly, a sign of our times that drug companies are more interested in creating drugs to deal with symptoms than researching (and providing cures for) the causes of arthritis, in all its forms - why kill the golden egg-laying goose (he asked, cynically)?

I am an optimistic chap, overall, and see some huge advances coming soon to health in this field - and many others - due to the combination of the 'genome project' and artificial intelligence (one of the very few positive advances that AI will bring to humanity/the Planet, I suspect - humans being humans...).

Not the least toxic meds but the cheapest meds. Methotrexate, which is the first line drug, is unbelievably cheap and can be very toxic to some. I couldn’t tolerate it at all. Biologics are the gold standard and I would urge anyone to push for them at the earliest opportunity.

I know this is an old thread but is anyone still around who posted?
I'm interested to know how they have progressed?
It's the only thread I've come across that accurately describes the agony of PR.
Mine was diagnosed ten years ago but was pretty well controlled for years and now it's not.

I'd also be interested to know how previous posters have fared (I also have palindromic rheumatism).

@burblish how long have you had it?
Mine affects random joints, toe, wrist, knee usually one at a time. It flares and disappears within about 36 hours but at it's peak the pain is off the scale. Worse than childbirth and nothing touches it. Afterwards I then get a few days of intense fatigue I was eventually diagnosed with RA because of bloods but the symptoms are still consistent with PR.
Hydroxychloroquine kept it controlled for many years but isn't enough now.

@FakeMews I first noticed the symptoms in probably 2017/2018 but wasn't diagnosed until a few years later. I had never heard of it until the rheumatologist told me - I had been assuming it was the onset of RA.

Like you, it affects different joints totally randomly. Flare ups tend to be clustered for me - over the course of a couple of weeks, different joints will be affected (sometimes one at a time but sometimes two or three - but never symmetrically), but then it will go dormant again for a while. Completely unpredictable unless I heavily use a given joint repeatedly - e.g., if I have been kneading bread a lot or decorating elaborate cakes, I know my hands and wrists will seize up the day after and be like swollen claws. I find hands and wrists most debilitating - I can manage knees, ankles and feet pain and impairment better. I am praying I'm one of the lucky few for whom PR won't slide into RA (although I understand the chances of avoiding RA eventually are slim); I'm sorry to hear you seem to now have RA.

@FakeMews I posted on this originally, it's quite interesting to look back actually. I've been extremely fortunate that I've now 'outgrown' it, it tailed off around menopause so I haven't had an attack for several years now.

I've got RA as does my mum.

People mix it up with osteo arthritis/old age arthritis all the time & really don't get that it's relapsing & remitting. A flare up can be severely disabling & I can be very unwell with a high temp & chills but can be virtually back to normal again in 24 hrs.

I tell people I have an immune disorder rather than use the term arthritis. I think rheumatism is an old fashioned word for old age joint pain & has nothing to do with RA.

One tip is to keep a stash of blood test forms & make sure you get a blood test immediately in a severe flare up as you have to have crp etc of a certain level to be considered for a lot of the drugs. The crp will be highest at the start of the flare up.

@Serencwtch I think rheumatism is an old fashioned word for old age joint pain & has nothing to do with RA.
You are correct, but, Palindromic Rheumatism is not RA, it's a rare auto immune disease with similarities to RA and often progresses to RA. One of the main differences is that it doesn't generally do long term damage to the joint and is not symmetrical.
I have been diagnosed with RA and Osteoarthritis but my flares still follow the PR pattern. Your tip about blood tests is a good one. I am usually as fit as a flea by the time I see my rheumatologist. My last flare was in my hip and was the worst ever I couldn't move unaided. By the time I saw the rheumy my CRP was normal.

Not sure how this hasn't happened to me before, but I had a flare up the day I had to get on a plane. When we were up in the air, the pain intensified and the swelling and heat also increased very noticeably - I imagine it must be to do with the pressure? The pain level reduced as soon as we descended (although the flare up continues unabated - it's just the intensity of it that went down). Has anyone else experienced this when travelling by air? Thank goodness it was a less than three hour flight.