Hi, I'm new here. I have a complex lot of health issues, and unfortunately, a dreadful GP, who referred me finally (I've been suffering "officially" since I was 6 yrs old, and I'm now 47), they sent me to an equally dreadfully Rheumatologist who discharge me in just 6 minutes without further examination saying I didn't have Arthritis because I am "fat old and frumpy", followed by the order to get out, when I questioned if "frumpy" was an actual medical diagnosis. Lol. ... Sadly, it wasn't a joke, and that has led to many GP issues, including them stopping painkillers because I "don't" have Arthritis.
Anyway, after speaking with a friend about my upset after another round with my Dr this week, he asked if I have Palindrome Arthritis. I'd never heard of it, and started looking it up. I'm really shocked to find that so much about it matches my symptoms! I'd really love to connect with other people who are suffering as I don't seem to find many online and there are no specific groups apparently that I have found.
And if you are a. P.A. sufferer, with a good Rheumatologist, and (especially if you are based in or around London), I would love to hear from you, as it looks like I will have to go Private healthcare, yet again, to get a more difinitive examination and diagnosis, leading to proper treatment. I'm currently bed-bound for most of the week with it all, and I don't want this kind of life anymore. There has to be a better way of living. And as long as my GP is unhelpful, then I have to find another way to get taken seriously.
Thanks in advance.
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ImSonia
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That appalling rheumatologist needs reporting. Totally disgusting behaviour. I’d have told him so too. Not abusively, but calmly would have told him he was awful. When you are in pain often people take advantage as they think they can bully too. Sorry you are not being taken seriously and treated so unprofessionally. Can you see another GP in the practice? Or move to another practice, but this could be difficult re another rheumatology referral. You don’t need these negative people when you’ve got health problems. They are supposed to be on your side so don’t let them intimidate you. Good luck.
Unfortunately, I have a number of rare conditions, that are expensive to treat. In the UK, if you're registered with a GP (you can't just unregister, especially if you need meds), another Surgery has the right to refuse to accept you, due to cost.... I've been on a special considerations Waiting List for 15years. Its a list that all other Surgeries have to take a certain amount of patients on from every year, but they can pick and choose who they want to take on. No-one wants to take me on due to the cost to them my meds would mean. So I'm just stuck with this Practice. 😢
I am in the uk also. I had no idea there is a special list doctors can choose patients from. It’s not worked that way for people I’ve know who’ve changed to a different practice due to a dissatisfaction of how they were treated, or not treated, but maybe they didn’t have as many difficult conditions as yourself. Sorry to hear you can’t change GP easily. I’d still want to see a different rheumatologist after your bad experience.
I wouldn't have known either, if I wasn't on it. When I called the NRAS helpline (who directed me here) the lady finished my sentence regarding the cost of patient to Surgeries. I guess each Surgery is a business at the end of the day, and I'm just badly eating into their profit margin, so what business would want to take on that responsibility. 😞
When I first developed symptoms 4 years ago I joined a waiting list of 3 months to see a Rheumatologist. By the time I got to see him my sore shoulders and swollen fingers had gone and he diagnosed me as having Palindromic Rheumatism. He said that whilst the symptoms were the same as Rheumatoid Arthritis my condition meant I would have occasional flare ups from time to time which would be treated as and when they occurred. He sent me away with no further treatment until it came back again.
I realized I had no confidence in him and so started searching the internet for a local consultant I thought would serve me better. 2 months later and I started to flare again, full body/all joints were inflamed this time so I booked a private consultation with the Rheumatologist I found to speed things up. He diagnosed me with Rheumatoid Arthritis (seroposositive) and started an intensive course of NHS treatment to get it under control. Best thing I did.
Keep looking till you find the right person to help you. Good luck 👍
Is it too late to issue a complaint about the offensive way in which the rheumatologist treated you? I believe this person needs calling out and disciplining. So rude!😡
I think I may have palindromic rheumatism but never diagnosed because I also have Sjögren’s, systemic sclerosis and degenerative disc disease. Told these are reasons for my pain and for previous misdiagnosis of rheumatoid. I did ask if I might have PA because polyarthritis came and went so dramatically but the rheumy said no back then, a decade ago. Still think it was and is although now been told more likely had polymyositis - which is also very rare. Mixed connective tissue disease seems to be the present label some are giving mine due to my scleroderma antibody but the arthritis still flares in a palindromic way.
I’m lucky I’ve never encountered a rude rheumatologist yet - although one told me years ago that I didn’t have a connective tissue disease or Sjögren’s or scleroderma and he was proved wrong! Another I paid to see about hips and back was same - also proved wrong. Patronising and dismissive I’ve come across but never outright rude! X
As you will have already discovered Palindromic Arthritis means it comes & goes,& in between having symptoms there is no or very little pain.I think most people diagnosed with itbare told to “wait & see”….& kept under observation.
However you sound as if you are suffering all the time not just in bouts….. which doesn’t sound like PA.
The attitude of your doctors is completely unacceptable,& all I can suggest is you either see a different GP at the practice you attend, or change to another GP practice.
I was diagnosed with PA over 20 years ago and was told just that, wait & see, and for two years I had regular checkups and blood tests when I had a flare - but mostly I just plodded along, having been prescribed pain killers when needed …..then two years on after a particularly painful flare, everything changed & my PA morphed into Sero+ RA.
Even 20+ years ago I had to resort to a Private rheumatologist to be finally diagnosed- and here I am 20+ years on doing well…I think because as soon as the RA was confirmed I was prescribed DMards, & was seen regularly by my rheumatologist ….a luxury not easily obtained these days.
So I think you may be right to ask for a referral to see a different rheumatologist.
If you don’t have Private medical insurance you can self refer….but getting an initial diagnosis privately could prove to be very expensive, so do make sure to get an idea of the costs involved before you commit to treatment. If a Private rheumatologist does give you a diagnosis, you should then be able to go back to your GP and get referred to an NHS rheumatologist …or whatever speciality is thought necessary.
I wish you well in getting a diagnosis……if PA is suspected, as far as I know it is still a waiting game to get a final diagnosis of what the intermittent bouts are a symptom of.
Unfortunately with palindromic arthritis…. one can be lulled into a false sense of security during the pain free periods…& in fact it is not unusual to be be told until tests throw up a known disease like RA, there is no treatment apart from pain relief during an episode & as far as I have gathered from speaking to many consultant Rheumatologists over 20+ years, there is no possibility of being prescribed any specific drugs, until tests come back showing the palindromic has moved on to a particular type of treatable auto immune disease…..like RA.
Because PA literally comes & goes, until a result shows something treatable, that is detectable & has a treatment …when a patient pain free as you sometimes are, if nothing shows up on tests there is nothing for a doctor to treat.
As I believe I mentioned it took two years for any test to show RA for me. For others it may be a longer or shorter time.
As your relationship with your GP has deteriorated to such a level it really would help if you could change to a completely fresh medical practice……as I understand the position maybe contacting the CQC (Care Quality Commission) would help to point you in the right direction?
Why don’t you telephone NRAS & have a discussion with them about the best way to proceed? I’m sure they will have dealt with similar situations successfully in the past.
But don’t just sit at home worrying about ….talking things through with people who understand can help.
It seems your present GP is not going to refer you to a different rheumatologist,& as this has gone on for so long….. a different approach does seem the way to go.
I've done so many complaints about my treatments both at the GP, and with the Rheumotologists, and even mental health people, that I've been labelled as a "Vexacious Complainer", and as I just found out, my GP added to my records, that I have Emotionally Unstable Personality Disorder (which I don't, and if I did, why am I not getting treatment for it, as it is treatable! Lol). So I just now feel like I'm "the problem child" of the practice.
Your treatment has been disgraceful. I would report them to standards committees.
I was diagnosed with PA, and the main problem was being seen when I had an acute flare-up.
I can see that if you're outside the hospital system, with no diagnosis, it must be very difficult - particularly at the moment with huge waiting lists. The main thing is to get into the system with a new referral with a different rheumatologist.
Could you change your GP and start afresh with another surgery?
In your situation that's what I'd do - and then start with getting the right blood tests, and viewing the results yourself. NRAS will advise on the tests you need.
I'd also document all my flare-ups, with a diary and photos. When I was at my very worst - which was crying in pain all night, unable to move my hand even a millimetre, I even got my partner to video me - just so I could use it to show how much pain I was in. In your diary give dates, location of pain, severity on a scale out of 100, and duration.
Once you have your blood results - get an on-the-day appointment during your next flare so the Dr can see how bad it is. After you're in the system for a rheumatology appointment - you'll probably be able to self-refer to the RA nurses so they can see you on the day if you're really ill.
I was only finally seen in clinic when I was really bad after about three years. If I'd known in the beginning how essential it is to be seen at your worst I would have approached things differently.
The main thing is to gather pictorial and diary evidence - it's not good enough just to say 'I was in really bad pain last week'.
Good luck - hope you manage to get some relief soon. Just to say - my RA is much better controlled now and I have not had a really bad episode of unbearable pain for a quite a few years. There is light at the end of the tunnel but you do need the right medication. Don't give up......X
I have had PA FOR 29 years.I have about 3 episodes a week depending on the weather,up humidity down pressure. I was told rite from the diagnosis there is no help.Years ago I was on remicade for 10 years. During that time I had hardly any episodes . I eventually had to stop taking the rem.Sorry I live in USA so I can't help you there.
Hello ImSonia, its so annoying how these rhuematoligist approach patients . I can appreciate your feelings about this but they are not all the same. One I saw said my arthritis was early osteo I have had it since in my thirties. My joints now swell and show red, my big toes are swollen, I have had gout including massivly raised uric acids, but the implication was my arthritis was insignificant ,like the experience you had . My GP says they are harping on about my weight now sound familier.? These docters /consultants seem to think there are only a couple of arthritisis when in fact there are numerous and no one does tests to determine which you have. As I understand it many arthritisis can be detected by fluid from a joint, blood tests , MRI of the joint, xrays of the bones plus the symptoms . Many arthritisis are inherited in the genes. Do raise an issue about your experience as it is not isolated I can assure you. And not restricted to arthritic illness. Get in touch with Versus Arthritis and Arthritis Action and tell them your experience,they can sometimes help. Do remember not all joint pain is due to arthritis, so there are many illnesses with movement pain. You can always message me if you require any info I am a volunteer for Arthritis Action.
Thank you so much for your help. All my symptoms fit the descriptions of PA. As soon as I heard of PA and looked at it - honestly - I was buzzing. It was like a light had been turned on in a very dark room. I spent 2 days talking to soooo many Arthritis Charities, and Organisations, and asking the same question... Can you recommend a Rheumatologist in London... same answer.. No. It is soooo frustrating. I really need to find a private Rheumatologist, who works in the NHS, and knows about PA, so I can get a diagnosis, then get moved into the NHS list, for treatment. .... It's that link that I'm missing. Unfortunately for me, when I've presented at the hospital with pain, I've been given liquid Paracetamol, kept in overnight, and sent away the next day, when I was limping, but could walk again. When my flares are at their worst, I can't physically stand up, and my house is not disabled accessible, so I can't even ring a friend to ask to take me. The GP hasn't had "see on the day" appointments in years. The last medical professional I saw, who saw me the day after a flare, thought I was deliberately tensing my joints when he examined me. The Physio thought the same in June. I tried arguing that, that isn't the case. And it was the first guy who was actually a Podiatrist privately, who wrote to my GP and insisted I be sent to a specific named Rheumatologist, but the Dr refused and instead, sent me to the Rheumatologist that discharged me for being "Fat, Old and Frumpy". The physio just got annoyed when she thought I was deliberately locking my Ankles, (when I was seeing her for a problem that started 3 years ago in one leg/ankle/foot, and is starting in the other side, which is agony when it happens, and now I'm wondering if that is PA now too)... She said I can do Physio, oooorrr, I can be referred to try and find the cause. She sent me to Orthopedics, and that's the reason I had the MRI Scan, with the result I had on Wednesday just gone, read out by my GP, that said I had bony Osteophytes and calcifications, in my joints, which she insisted was down to wear and tear, (because I'm fat and 47), but otherwise pathology is allegedly normal. I have yet to have the follow up with Ortho - but as Ortho got side-tracked by the pain I described and a rather rash action I did one night (I took LOTS of painkillers, and took a knife to my leg with thought of removing it - but realised how ridiculous and dangerous it was and stopped, spent the rest of the night in pure hellish agony, with nothing but a scratch from the knife - but that tale was enough to freak him out! lol) , then he proceeded to ignore what I was saying, and sent me for the MRI that focused on just one part of my one Ankle - inspite of apparently doing my whole lower leg. He refused to do both legs, as he said it takes too long, and costs too much. **sighs** .... I just really need to find a good Rheumo who knows about PA just as a possible start point for investigation and treatment. ....
Here's a suggestion if you go to physio, they may be able to tell you of a specialist who treats PA. Believe it or not there are very few who treat hands too. Anxiety and signs of mental stress end up with the wrong treatment I speak from experience, and you recognise this from your action with the knife. Pain can be treated at a pain clinic, so while you feel happy it might be PA, why not approach the medics for a pain referral rather than diagnosis right now. With the rarer joint conditions, it is often harder to get the GP or others to accept. In respect of the way the Rheumatologist spoke, try to realise any joint disease will benefit from loss of weight even if small, don't come down to their derogative levels. Not easy I know. When you see these people always use the I word if you want action, as in I feel like this or I think this. If you still feel you need help, try Pals. Even if someone tells you a name unless you go private to wherever they practice you can't guarantee a GP referral. Later I will try and search for a London Rheumatologist for you. Think about all the options and look at maintaining PA as your illness fitting the symptoms. Best Wishes
Hello again , it seems PA is treated as a inflammatory arthritis that can lead to RA so you are most likely to be treated by an RA rheumatologist not a specialist as the treatment is similar, only not ongoing as your symptoms come and go. You may have more than one joint issue which often happens and inflammatory disease . Some of the private hospitals have shorter waiting lists and many different consultants, But you pay the price. Thats about the best I could find. Good Luck.
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