Am I just old or does any of this sound familiar?

General
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I was diagnosed back in 2012. Initially barely able to move … for a few years. I am now very mobile really, with a lot of effort. But before all this, I was very, very active, very physically capable. I loved dancing and demolishing walls etc.

However my x-rays apparently show very little of note to this day, apart from quite a lot of ‘OA’. I contend that this is most likely OA caused by PsA because it has all come on since the PsA dx, the change has been rapid & profound since that. Doctors like to suggest it’s due to ageing, more so now that I’ve conveniently passed the 60 mark. When pressed, they usually admit it’s mostly secondary OA. I’ve also been told I have ‘no significant erosions’ … so maybe my joints are only disintegrating a bit, which is nice :persevere:.

You may not be so weird. If erosions have not been found that is most definitely cause for rejoicing. But PsA is weird, it does all sorts of different things to joints and it changes our abilities and our lives little by little. X-rays and other forms of imaging are really not that helpful in diagnosis for many of us.

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OMG, no, you’re not weird at all @kchuplis. The disease is weird, and sinister; an annoyance and debilitating; obvious and invisible.

So your ankle isn’t damaged yet. That’s great news! But, it doesn’t mean the pain is imagined. Your pain seems to be generalized. Some have more localized pain. I think the general “all over” pain is just as bad, but it’s not always severe. It’s more achy, sore and flu-like than swollen and acute. I can imagine how difficult it is to diagnose what with how we all describe the disease in so many different ways! And with no visible psoriasis, doctors really need to be well-educated and familiar with the complaints of many patients to be confident in making a diagnosis.

It’s really hard to go ahead with meds when you don’t think your “mild” symptoms are doing any damage. But, unfortunately, they are, and the sooner you get meds to turn things around, the better. I waited and waited. Now, it’s hard to walk because my lower back and feet are damaged. The foot doc told me I’d need ankle replacements because the cartilage in my ankles is worn very thin. I didn’t even know my ankles were part of the problem. Combined with no and little cartilage in the joints of my feet, it’s a no win situation. When my ankle cartilage is completely gone, I can only think walking will be impossible.
So, don’t wait until things get so bad you need to beg for meds. Because you don’t know how quickly that day will come. I never, ever thought my PsA would cripple me!
And, please don’t think you’re imagining the pain. Sadly, it’s real.

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Karen I can relate to what you’re going through so well, it sounds a lot like me. I don’t actually have noticeable Psiariasis like some people either, just a weird itch on back of my neck sometimes and also in my ears which comes and goes (also around my bottom lol) my joints ache knees ankles hips shoulders my right thumb etc. Terrible debilitating pain in my feet and recently what plantar fasciitis and a ganglion cyst on top of my left foot. It’s not as bad as what other people seem to get get but this is really affecting my life and making me really miserable. (Also some weird sores in my hair) Past history of IBS, Uterine Fibroids, mum had Pagets Disease as well as Osteo and Rheumatoid arthritis. My brother has it too. I’m 53 xx

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Oh yes I forgot to mention rib pain too left side of my ribs and gets worse if I get dehydrated :+1:t2:

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This is true. But I also don’t want to take a cancer drug (basically MTX) if 1) I don’t really have PsA or 2) I don’t appear to have damaging inflammation and that may never develop. That is what is so hard. I hate to say I “want” anything but with two Hashimoto sisters I’m like “that’s measurable, diagnosable, why can’t it be that if it is anything”. Honestly, thyroid is going to be involved in this at some point because every woman in my immediate family has/ or has had an issue. I’m just frustrated. I just don’t know the right thing to do.

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Your history does sound quite similar, though honestly, I do not feel like I have ever been debilitated. That’s actually why I feel like such a PITA complainer. Even last SUnday when my leg hurt SO BAD, getting up and moving around doing light housework etc, actually improved it. It was just that every time I sat down it would get super sore and I’d go back to working it out by moving. And then worse yet is I never SEE anything. No swelling whatsoever, but in my head it feels like something should be swollen to the size of a tree trunk. Very interesting you also had rib pain. This is actually the first year in about 4 years I haven’t had rib pain. Instead it’s my odd ankle, that looks fine but aches half the time. So bizarre.

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Love to you Karen, this is truly a huge “trial” for us all … I had. O idea my life could ever become like this xx

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No your not old, I’m 52 and for years I’ve been in pain. I have had endometriosis so they put all my pain down to this. Then I realized I was still in pain so I was told fibro. I have PTSD so this is what all the pain was. Then a couple of years ago I finally went to see a Rhum and he sent me for a full body nucular full body scan, I have never had psoriasis but I have full PsA.
You need to ask for a full body nucular medical scan, this will tell you how bad your PsA is. Keep fighting as you know your own body and you know if you are ill.
I hope you feel better soon.

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An x-ray might not tell you much about an ankle. I had swelling and pain for months. X Ray was unremarkable.
I had bone marrow edema, a fractured calcaneus and evidence of inflammatory arthritis that showed up on MRI.
I understand your hesitation to start meds, but why wait until damage happens? I just had my third joint replacement and wish I had started earlier and gotten ahead of the curve!
I have very mild skin symptoms. It does make it confusing. We get it!
I am all about being an informed patient. I’ve had some very unhelpful docs who totally missed what was going on with me.
But this disease is not something to play “chicken” with! I hope you find the best treatment plan for you and that you feel much better soon.

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Well, I hesitate because I have no definitive symptoms such as actual swelling or any skin symptoms so MTX seems so severe if something else is going on. If I had even one finger or toe swell, I’d say yep it’s that. Without a single confirming visual symptom but things that sound just a lot like it, I truly worry about taking something as serious as MTX. It’s a conundrum for sure. No one wants to have a thing but OTOH, sure would be nice to not just be well if you take this and it helps then yes it’s PsA. (Which is basically what the rheum said.) Frustrating for sure.

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Well actually the record with PsA and MTX is not very good, and I’d question “trialling” it to see if it works. You see, whilst some do really well on it, it takes a long time before you see the result (4-12 weeks), and does very little for many of us (many of us take it as an adjunct to bios to prevent antibody formation, rather than our main medication). So you are just as likely to be 12 weeks down the road, still entirely in the dark.

Prednisone, on the other hand, is more linked. PsA is certainly not the only thing it helps, but if it lessens the pain and stiffness there’s a good chance it’s an inflammatory autoimmune condition. And it’s effects are usually pretty dramatic (within days).

Not recommended long term (I would give up smoking ten times over before going through prednisone withdrawal again), but if I wanted a quick (though not entirely definitive answer), I might try a week of steroids. If the prednisone works to lessen pain and stiffness, then it would be logical for me to try the MTX to control what may be a chronic autoimmune disease long term.

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See now I just wonder if we are all told that we are mild to begin with. That seems liked a bit of a trend to me. I was told I had limited desease ( I have no reason to suspect this isn’t true) but although only diagnosed in Feb, I am already finding myself flaring very badly & methotrexate failing to stop this. Point is that this is a rapid desease that doesn’t hang around. It can seem to surge very quickly. Mild one week can be severe the next.

Like many I struggled with ‘unknown’ pain for ages. Over last summer I was in so much pain it was terrible. The rib cage was only part of that but it was bad. I remember taking about ten mins to turn over in bed & having to work myself up to it because I knew it would hurt so much. The Dr briefly tried the ‘its Your age’ thing (I’m 48 & was physically fitter & loads of peeps 10 yrs my junior) so I shut that down. Then a digit became very swollen & never went down. I also had three blood tests with raised inflammation levels so it became apparent there was an issue. I was so lucky with the Rheumatologist I landed with. He diagnosed me right away & has been totally brilliant from them

Age will result in some wear and taer & I guess we can all accept that. However ‘it’s your age’ on its own is not a diagnosis for anything. If you have pain, any kind if pain, then you want to know why. Where is it coming from and what they can do about it.

Also this ‘let’s pretend you have PsA’. What!!! What is with that exactly? I’m with Poo there I’m afraid, that would not wash with me either.

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So now rehab therapist thinks all if not most my issues are posturally related (and honestly, I don’t doubt him.) Won’t hurt to try correcting this anyway and see what shakes out.

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Sorry I’m late to the thread, but I felt the need to chime in.

First off, I hope PT is treating you well! I love PT, and can’t wait to get my next referral… However, my toes doubt and wanna smack some sense into your PT…
I am definitely going to be the biggest fan of ‘postural and habitat changes for pain reduction’ that you are likely to meet. It can help immensely (otherwise I wouldn’t be in training to be a ‘movement coach’ :stuck_out_tongue: ), but if inflammation has your number, it will still come up.
The widest toe box in my shoes, attention to alignment, slow adjustments, gentle foot stretching… utterly pampered toes and feet mechanically speaking. And the sausage toes came for me all the same… Don’t wait for your number to come up. Move more, move in a manner kinder to your joints, but don’t let yourself be mislead into thinking it’s gonna stop or fix the issue if it is inflammatory in nature, no matter how much better things can feel.

Unless you have some sort of sports injury or other trauma to the area, it shouldn’t just pop up hurting enough for tears, then disappear. Things hurting to the point of tears is a big deal, especially if it’s not constant, and slowly getting worse.
Joint pain roulette is not a game to be playing every morning, and if you are playing, the rheumatologist is gonna help you place your best bet. Even if your body is playing joint pain craps, it still sounds like some sort of inflammatory joint game.

And now the main reason I’m here… I wanted to say this about your ‘lack’ of swelling:
I have hypothyroidism, and didn’t get treated because my labs were always juuust inside bounds, but based on a swollen thyroid large enough to impact breathing and swallowing and anti-Tg+ only. I still had the cold nose, feet, hands (which masks the heat that accompanies the joint pain, making it seem ‘normal’ in temperature), but lots, and LOTS of swelling that I didn’t know was swelling.
When I got on thyroid hormone replacement and the seas of swelling receded I finally saw face-to-face the true swelling in my joints in feet, ankles, knees, etc, etc. But for the longest time just thought it was ‘residual swelling’ (my denial is very strong, if you couldn’t tell…)
When the malleoli of my ankles turned from islands to mountains, it became apparent how much swelling around them I have and how that corresponds to days with extra pain. This wasn’t noticeable before, at all. Ever. When my sausages appeared, I was most bitter about my toes being fat again, and didn’t I just get rid of the swelling??? Oh, wait, it’s just a few of them… Must be something else…

What I’m trying to say, I guess, is Hashi’s (or other sources of full body) swelling can ‘mask’ some of the joint swelling if it’s ‘minor’.
If you have such a strong family history for it, maybe you’re having the same problem I was with regards to seeing the swelling?

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Interesting you brought this up. This weekend I again had massive hip pain, butt and crease inside leg. However, I also was having a big IBS-C problem. The more I got rid of that the better it got. HOwever again, it makes me wonder about something mechanical if that affected it, but I have often wondered how much of this is connected to IBS. Once it reduced a bit and I could even THINK about doing something, I did this postural exercises on that hip (it’s the hip we are working on that was having the pain) that also seemed to help. And yes, I thought a lot about thyroid again. I think I will ask my doc to do a FULL panel, not just TSH and FT4. Though if I had hashi’s it doesn’t seem like there is anything they recommend anyway, but I just WISH I HAD A NAME for whatever all this is. So far I have zero blood indicators other than a climbing TSH (has gone from 1.26 to 3.18 - last time this happened I got to 4.08) which is outside of the controversial lower range that doctors and labs won’t use. I still feel like that is also a thing. Like I am symptomatic but within “normal” range. The doctors say I have no visible swelling (and I do not want it!) but boy I do feel swollen a lot.

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@kchuplis, I saw a GP for a while that specialised in the sort of hormone changes you are talking about that most standard docs see as sub-clinical, complementary to my PsA.

He didn’t like the similar climbing TSH story I had - because his interpretation was that my TSH kept climbing as my body was not producing enough cortisol for the inflammation. He didn’t think this was related to any problem with the thyroid, just that the ongoing chronic inflammation was always outpacing my cortisol production by a tiny bit. In my case, seems he was right. Got the inflammation under control (with conventional meds), and the pattern stopped.

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Do you mean conventional meds for the PsA? Is that what got it under control?

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Yep, Biologics for the PsA had the flow-on effect of sorting it out.

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Ah. Thanks. That makes sense. I’m miles better but still having the issue. But I have gotten this way (in a way…my “symptoms” have changed a bit and it’s a lot harder to find something to get me going) for years and years. And every time I think I am going to die, I swear. I think I need to try a daily fiber supplement to see if it helps. At least my hip feels better.

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Symptoms were similar in my case for many of those you described, as soon as started mtx and prednisone after a coole months orwas a different woman, even more so after adding biologic. This disease requires strong action to prevent damage and to optimize health recovery.

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