I finally decided to spend some money and get a PT opinion/evaluation of my knees and feet. He is quite young, under 30 but listened well. Did an extensive examination and concluded that he is limited as to what he can do other than hamstring stretches some foot stretches etc. He said that chronic inflammation really won’t be helped by things that he would do. My range of motion in my knees is terrible, limited by inflammation pain. (not structural issues) He was honest enough to say that they don’t cover PsA in training and when I asked about enthesitis he said, “Entha-what?”. Is the lack of experience and knowledge of this limited to the rheumatologist department? My brother is a retired physio and he said that enthesis wasn’t invented when he was practicing.
PsA really is quite rare in the big scheme of things. I’ve never found physio/PT of any use for issues caused by PsA. And indeed even podiatrists don’t get that PsA inflammation moves about so an insole today might be useless next week unless it’s actually caused foot damage. My PsA really hasn’t caused foot damage yet. But I can get horrible foot pain sometimes.
Ask your PT person about hydrotherapy though. I’ve not done it but every PsA patient I know who has, swears by it. You might be surprised how exercises in the hydrotherapy pool helps your knees and feet.
Enthesisitis by definition is all about the insertion point of the tendon/ligament. Us lot know it’s not actually just limited to there either. So the medical definition doesn’t always fit. It’s a bit like the definiton costochrondritis talking of the involvement of the sternum. None of my rib pain has ever involved my sternum but it’s still costochrondritis for the want of a better definition.
And I think that’s a very valid point for many rare conditions. The medicos say ‘X’ but the people living with a rare condition know often it’s not just ‘X’ but rather X and/or Y and/or Z. I was symptomatic and was told “Well, that just can’t be happening” which left me questioning myself, questioning my own sanity, which I think was the aim ie If the patient is questioning themselves at least they aren’t questioning the medicos. We don’t all fit nicely into their ‘Diagnosis Box/s’, they like it when we ‘fit’, they don’t like it when we don’t.
‘Us lot know…’ YES, WE DO!!! because we live with our conditions each and everyday. Just to have another person say “Yea, me too” PHEW, what a relief.
Merl from the Modsupport Team
Well said @Poo_therapy and @ModSupport Merl. I had happy tears come to my eyes today as I left my consult because I finally have a specialist who believes my symptoms are possible and real, whether they fit the box or not! And in my case that’s really saying something, cause the box looks like nice rectangular matchbox, and my symptoms are more like a 150kg thrashing octopus !!
Amos, my Physios seem to understand what it is, but more in the context of repetitive sports injury. As such, they don’t really know what to do with it, cause in a sports injury you just rest it.
My personal trainer and I take the approach that we modify any exercises so that the weight and/or range of motion is limited so as not to aggravate the tendons, but still try to do the exercises (mostly light weights) to prevent too much muscle wasting. I think that seems to help me (even just psychologically, which is half the battle).
I just started PT three weeks ago. My rheumy and I discussed my loss of range of motion in my hips and legs and decided it was worth trying PT. It has been a painful three weeks. They are working on my shoulders and hips as well as strengthening my back.
I am sure it will help, I just have to get through the painful part. They don’t work much with PsA but do with RA and OA. They feel that however I can get the most movement the better. Of course they recommended that I go exercise in a pool, but that is not a real option for me.
The PT person that did the triage did tell me that if I felt like SSDI was in my future PT would be recommended by them, so this would knock that out from SSDI folks.
I feel like all the stretching is helping, but it can be very painful at first. They are teaching me a lot of things I can do at home once the PT runs out.
I doubt they learned about it in PT training. I’m sure it was covered in medical school but I know doctors who aren’t familiar still.
Thanks for sharing, I am starting PT in a couple weeks. I now have SI joint inflammation along with enthesitis, knee, foot / ankle pain and lumbar issues now too.
I noticed a lot of doctors that I come across do not know about enthesitis.
I’m hoping to get some manual stretching but every time I’ve gone to PT no one has done it.
Obviously we need to promote Enthesitis education: billboards, sky writing and we could meet for an annual march/parade…skip the march, people will think we’re faking it! We could have our own Enthesitis Day (E.D.) and make T Shirts that say “Up with E.D.” oh yea…that’s already taken. If we could get a token (Tokin?) Enthesitis prone person in every movie or tv show, surely the world would notice us! Hey @Seenie, what’s the plural form of Enthesitis?
I find that I usually have far more trouble with enthesitis than my joints. Unfortunately since my joints are not terribly effected I feel like I’m not taken too seriously. I suppose I should be glad that I still have good mobility (and I really am glad) but it doesn’t make it any easier dealing with the pain. Fortunately my PT is not really old but certainly not fresh out of school and has amassed a great deal of knowledge over the years, including knowledge of funkiness like PsA. He can be very creative. It may be worth the effort to just call around and try to find someone who has been practicing for a long time with well developed out of the box skills and knowledge.
And when the “Up with ED” tee shirts are printed let me know
Just a thought for you to ponder. If there is any possible way of getting into a pool and one that is heated in the cooler weather I would recommend it. Exercising when you are weightless in the water makes movement so much easier. Where I live in Australia most re-hab centres have a pool with a ramp so it is easy to get in. I hope your PT helps.
Water exercise sounds great but it would be considerable distance and cost as I live in a rural area. This Enthesitis is so random and hence unpredictable. It comes and goes quickly or it has a residual presence after a flare and seems to lurk like a foe ready to jump out of the shadows at any moment. Just because Tuesday happened to be a marvelous day doesn’t mean Wednesday will be the same…maybe better for three hours and then terrible for…who knows? So that is what makes it all so frustrating, I just don’t know how to prepare for the way pain moves around. Spend money on a custom knee brace and then go months with the knee pain either gone or worse but on a different spot that the brace isn’t designed to help. And people think I’m nuts as my body language is always foreign to them. But as time goes on, I guess I count on some pains to greet me every morning.
All this moving around stuff, knee braces bought for one thing but your knee does something different next week is so PsA sadly. It’s the nature of the disease, indeed for me one of its most definining characteristics. And we continue to get flair ups of these things regrdless of how well our meds are working too.
I had an achilles tendon issue earlier this year. The first insole the podiatrist gave me at some cost worked really well for about 10 days and stopped me crying. But I had to go back and get a different one then as the inflammation shifted again at some cost. It’s simply what PsA loves to do sadly.
Yes, it is sure a mysterious disease and hopefully with continued research, a med that actually shuts off the wonky immune system will be found. It still seems hit and miss and miss again. Maybe our next T-Shirt order will say, “I’m not crazy, I have PsA” which will confuse the heck out of most when women wear the shirt. Sigh, more explaining ahead.
Totally cracked me up!!!