Hello everyone, I’m 45, live in Somerset, England and have been diagnosed for just over a year. I don’t have psoriasis, but my brother has PsA, hence my diagnosis.
Several things come to mind reading other people’s stories - I think I had a fairly early diagnosis, thanks to a diligent GP and good access to a rheumatologist, meaning fairly quick access to disease modifying treatment. I am also very thankful for the NHS here in the UK; free access to medical care and heavily subsidised medication - around £120/year for all my medication.
My PsA affects primarily my hands and feet, although I’ve been reading about rib pain with interest, as I thought mine was muscular.
I have recently seen my rheumatologist, who looked at my blood tests and felt my disease is well controlled (though my blood tests have mainly been normal anyway) I still have burning pain in my hand and feet joints when I use them and so was very puzzled by this proclamation . He then poked me in lots of areas and announced he thought I had fibromyalgia-like symptoms and advised to start an increasing dose of Pregabalin! I am taking a slightly more holistic view of this and have started swimming again, walking every hour prompted by my Fitbit and have made a physio appointment. I’ve also seen my GP and am going to try 10mg Amitryptiline when needed. Any other tips/suggestions? I wondered if my muscle pain might in part be due to using my body in different ways because of joint pain?
I guess I expected that if my disease was well managed, my joints wouldn’t hurt anymore - what are other people’s experience of this, please?
By the way, I am an Occupational Therapist (OT) working with adults with long-term conditions in their own homes. I see my fair share of people with rheumatoid arthritis, a couple with PsA, lupus and loads with fibromyalgia. It can be hard not to think of all the worst cases I’ve seen… Probably explains some of the tears and I must be a nightmare patient!
I saw a rheumatologist specialist OT and she was great, very helpful - I’d recommend OT to everyone (I am a bit biased!!)
Anyway, that’s me - any advice gratefully received
Oh and by the way I have a lovely and very supportive husband.
Welcome Andrea! I’m in the UK too, I live in Kent.
First thing that occurs to me is that many of us (well, me anyway) day-dream about finding a practitioner who also has PsA! Not that I’d wish it on anyone, but perhaps you understand what I mean.
I’ve been pondering the fact that the one red flag that makes rheumys sit up and take notice is swollen joints. Also high inflammation markers and maybe a few other things, but few of us have persistently high ESR or CRP once we start treatment or indeed ever. I realise there’s a good reason for this i.e. the main aim of treatment is to reduce the risk of joint damage which is, I guess, greatly increased if joints stay swollen. With all the other ‘stuff’, of which there can be a great deal, there’s often not such a clear cut solution though if problems persist as opposed to waxing & waning, then help tends to be offered eventually. Also, I think this is an NHS thing, a slight tendency to tunnel vision in rheumy departments. I’m a big fan of the NHS, I’m also aware of its limitations.
That was a round-about way of saying that what constitutes good disease control often surprises me. However, pain can & does remain once PsA is well controlled. I have found the kind of pain post swollen joints to be very different though. It’s not agonising but it is wearing. Many here have been reluctant to accept a fibro diagnosis and I would be too. I reckon you’re doing all the right things. Any thoughts on tai chi? The effect on my burning feet (they stopped burning so much a few months back, no idea why!) used to be very interesting indeed. 20 minutes into a tai chi session the burning would intensify, then disappear and stay gone all day.
Oh, and recently saw a rheumatology OT, I agree with you, she is great!
Good to meet you!
Welcome. I so agree about thinking some of the pain also relates to using our joints and muscles in different ways. Eg my gait goes off when I have hip and si problems. I seem to have to be very conscious of correcting it or it causes other problems. That’s what I think anyway.
Welcome, a.laker. It’s great to have you here, and it will be extra good to have someone with a slightly different view of the PsA empire. The question of whether pain is inconsistent with disease control is a good one. I think it kind of depends on experience as well. I know what aches, pains and stiffness are “normal” for me when my disease is well-controlled like it is at the moment. Blood work in the normal range doesn’t mean zip for 51% of us: we belong to the group whose ESR & CRP never gets out of the normal range. But if your rheum has been watching your numbers for a while, he might have seen them go down from where they were, with treatment. Caution though: mine were in the normal range, and my rheumatologist thought things were just fine with me (although I told her how terrible I felt). In the course of less than a year, my hips were damaged to the “need replacement” stage, and my feet sustained irreparable damage that makes walking very difficult. So you might want to think about getting some kind of a second consult to be sure.
Nothing about this disease is simple! You thought your rib pain was muscular … well it probably is, kind of. If the tendons and/or their entheses are inflamed, you move the muscle and that pulls on the tendon and … owweeeee.
I’m glad that you’re swimming and moving: you know how important that is. Tntlamb, who you’ll be meeting soon, has a corny saying that is SO true: “Motion is lotion”.
Glad to meet you! As you can see, we’re a friendly enough bunch, and we love new company. It sounds like you are doing well for someone just diagnosed. Be grateful!
I had burning pain in my feet–that was a few years ago. IDK if it was when I used them, but it was more intense as each day wore on so that by afternoon most days I was nearly crying and by the time I went to bed at night the burning (neuropathy) was unbearable. At first, I used ice packs, which helped a great deal for short periods. After months of that, my doctor put me on a small dose Nortriptyline (I think it’s almost the same as Amitryptyline) which relieves neuropathy. It worked! After about a year of taking it, my neuropathy was gone and I stopped taking it. It was a year or so after that that I went on Enbrel because my PsA pain (pretty much everywhere including the fatigue, etc., etc., etc.) got unbearable.
The reason I’m telling you this is because I should have gone on Enbrel sooner, when the burning started (because at that time I had already been diagnosed with PsA but not treating it with meds). I think the neuropathy was a symptom of the damage being done to my feet and I ended up with very painful feet because of it. They were fine for awhile after I took the Nortriptyline, and for about the first six months on Enbrel. But then all hell broke loose and they are awful now. There seems to be very little one can do about painful feet.
So…moral of the story…do not ignore the burning in your feet–something bad could be brewing!
Thanks Sybil, that’s really interesting and helpful. I have thought about tai chi, need a class locally that fits round work etc. Will keep looking.
I think being a practitioner with PsA can make me more empathetic; but also sometimes a bit sceptical or less tolerant!
Interesting what you say about pain even once well controlled. I suppose I was hoping for symptom free and it’s a bit disappointing when that’s not the case.
Anyway, first night trying amitryptiline, keeping things crossed.
Great to hear from you x.
Thanks Seenie, it’s nice to be in contact with people who know what I’m talking about. I’m just not sure whether my disease is well controlled and can only listen to my body. I think I’m going to try and talk to my rheumatology nurse about this, as they very much go on listening to me and my symptoms rather than blood tests.
I don’t know if this will happen for you but my first three weeks of amitryptiline I had alot of brain fog and tiredness but then it settled down. Have been on 10mg for about 8 months…for me it has helped a lot. Good luck
After first night, feeling like I just woke up and am a bit groggy still at lunch time, but pain still there. I understand you need to take it regularly to feel the benefit - how do you get round the “avoid alcohol”??? I like the odd gin and tonic!!!
Failed at the avoid alcohol bit…reduced. also stayed at 10mg as more helped me physically but not emotionally or intellectually. Good luck
Lol! I think being anyone with PsA can make you less tolerant! Hell hath no fury like a (PsA) woman shorn, just been to the hairdresser and am apoplectic! Must be the PsA I guess, it usually is!
I do think the ‘well controlled’ label requires a little scepticism sometimes. My current rheumy thinks that worsening fatigue etc. means the disease isn’t as well-controlled as it might be. My last rheumy took a similar approach. But I notice on RA forums (which obviously get a whole load of ‘traffic’) that people who are going through sheer hell in very inflammatory arthritis-specific ways, as opposed to the add-on conditions, can be told their disease is well-controlled. What we do with that scepticism is another matter. Kind of an art-form, managing appointments. But of course there is always the second opinion route if doubts reach a certain point.
As for Tai Chi, I find it useful easer-upper on long car journeys. I try to find a quiet spot outside service stations & it’s magic.
I wish I could figure out the Tai Chi, Sybil, but I’m so uncoordinated I tried it a few times from the video you sent me and I never felt like I could catch on. I do believe if one can perform it correctly it could be very beneficial. For myself, I’d maybe do better if I could take a class, but IDK how I’d find time for that.
To be fair it’s very hard to copy moves from a video. I was thinking more that just focusing on some of the repetitive foot moves would help. There are elements of Tai Chi that seem to help me, especially the transferring from foot to foot ones and instructors say that just taking one of two principles from it can be useful. It’s the age old problem for us isn’t it … how to make time to do the stuff that could potentially make our day to day tasks etc. easier.