I’m feeling exactly the same at the moment. Just mind yourself and will flow … If it does 
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Thanks for posting Amos. It’s a question I’ve thought about a lot myself. I’ve lived with PsA for nearly 20 years now since age 18. In that time I’ve raged and fought it, had highs and lows and frustrated myself frequently with thoughts of what I might have done to trigger a new particular pain. Eventually I’ve found learning to take each day as it comes and that these things can’t necessarily be predicted or avoided to be the best way for me to deal with it. I had nerve conduction and ultrasound last October which showed only minor damage thankfully but this was worst in my right hand, the only extremity at the time which (apart from one finger) wasn’t symptomatic. They offered a steroid injection into that wrist but as it wasn’t actually bothering me I didn’t think it was needed.
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Well written, I appreciate you sharing. I’m in a very frustrated and somewhat angry mind right now. After 3 months since my last Rheumatologist appointment, I got in 4 days ago. By the questions I asked, she gave me a lecture on the foolishness of using Google for information…I should only trust her judgement. I told her that if I had to wait for her availability for information, I would be left in the dark. After 5 months on MTX, I had concern regarding continuous foot pain and the need to discern my knee pain: PsA or other. Now she says its only a guess if I have PsA since I don’t have any swollen joints or blood work with inflation indicators. I have never had any sort of joint swelling and look perfectly normal but have intense foot, knee, elbow and at times neck pain. The fatigue is off and on and I think lessened with the MTX. Just really frustrated with a professional who shows up almost an hour late, puts me on medication and because it is starting to help, doubts her initial diagnosis…but wants me to stay on the MTX. Where does that leave me? “Because you don’t have sausage toes and fingers, I’m not convinced about the PsA”. ARG! (There all vented and happy)
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This statement would worry me. How many of us here have or have had this symptom I wonder? I doubt there’s that many. I think it’s a very out-dated approach.
Clearing out some paperwork recently, I came across a letter of complaint I wrote to the hospital I attended in 2012/13. My attempt to be as factual as possible about my experience with a certain rheumatologist reads like pure farce, despite my sincerity and careful tone. PsA had been diagnosed by two rheumys, including his ex-boss. But this fellow then decided I had RA. Then he declared that I ‘only’ had OA. He screamed and ranted at me. He invited me in for an odd ‘informal chat’. And so on & so forth.
I made the decision to move to a different rheumy in a different hospital. It wasn’t easy and there was a long wait. The new guy was terrific and no doctor since then has questioned the dx.
I suggest writing a heartfelt letter detailing your concerns to your current rheumy. If you and she cannot get on the same page then definitely consider finding a new one if at all possible. You’ve fought hard to get an understanding of PsA and to adjust to it. Even if the current rheumy’s doubts are justified you deserve a very clear discussion with her at the very least.
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Thanks for the practical advice and rational approach. I got in with this rheumatologist because she was the quickest to see me. She just started her practice and is fresh out of med school. She might be cutting edge in regards to new meds etc but likely is learning as she goes. Have to start somewhere but I think I need someone with an experienced hand and approach. Thing is, in our Manitoba medical system, all dr’s write reports that only other doctors see hence a great opportunity to “jade” a different rheumatologist…they watch out for each other.
I’d always advocate the letter of complaint approach but in a perhaps not in your situation as regards to where you live. Any chance you could just get an appointment with another rheumatologist just anyway?
Remind me, do you have or have you ever had psoriasis? Might be worth googling Caspar Criteria, mentioned by tntlamb in this thread:
Believe me, doctors in the UK like to chat too. Even if they haven’t had a pow wow, some regard any patient who has ditched a fellow medic with suspicion. The rheumy I self-referred to was the most rational of men, yet his first question was ‘why did you decide to change?’ ‘Fortunately’ my knees were the size of baseballs, one look at them and no further explanation was required.
I have since moved to a different part of the country, landed in an extremely overstretched rheumy dept., and therefore changed yet again. This time I just explained why I’d made that decision.
Yep, changing can be tricky, questioning doctors can be a little risky too. However there’s no need to upset your current rheumy in order to sound her out. Appointments often leave questions hanging in the air and it seems to me that you have some that need asking. You can be nice as pie, but ask away. I’ve got no investment in having PsA, if I was sure I actually didn’t have it, I’d be very relieved. But the stakes are high if medication isn’t adequate so I’d require A LOT of convincing information before even accepting that there was room for doubt.
You can write to her and google (haha) other rheumys, do everything you can to sort things out.
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Hi Sybil,
I have no psoriasis, but my mum has it. Also found out yesterday that my deceased dad also had arthritis and having recently rekindled a relationship with my sister, found out that she has arthritis as well. So I am sure there was genetic transfer that took place.
Nicole 
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Hi Nicole,
was / is your diagnosis in question? I think my grandma may have had PsA, though I used to cut her toenails (not a favourite job for a teenager) and she did have very nice feet … somewhat unusual in a PsA sufferer if that was indeed the case! But my god that poor woman was permanently tired and had ‘rheumatism’ that disabled her …
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I’ve had inverse psoriasis for 7 years. Started real bad and been pretty mild since. Same as psoriasis but located on the inside creases of joints and warmer areas of the body…especially eye lids and ear canals.
To see any specialist I have to be referred by a GP first. Then 3 months wait for a consult. I’m staying on the MTX for another three months…but I think it isn’t doing as much as I need.
Hi Sybil,
My consultant seems pretty sure it’s PsA. My finger nails are now full of ridges and not the prettiest things to look at certain times of the month. My feet are awful. On most days I can feel the pain oozing from every small joint from my feet. Standing up from bed first thing in the morning is excruciating. I am on biologic number 2 and I am praying this works.
Nicole 
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Similar procedure in the UK, though the first changeover took over 6 months. I had inverse psoriasis for many years before getting PsA. It does not have to be severe at all to be a significant indicator of PsA.
If I were in your shoes I’d want to know what other conditions my rheumy suspected. I think it’d be good to talk to her some more. Really think hard about what you want to know and why. It doesn’t seem right to be left in limbo, which is how this sounds.
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Maybe she (Rheumy) was having an off day and confused by a recent MRI on both knees that indicated all sorts of mechanical issues unrelated to PsA. I think my knees are worn and torn BUT also have inflammation from the PsA that is amplifying the pain caused by wear and tear and OA. (If that makes sense). Now waiting for some sort of specialist dr that does ultrasound. (Not just a radiologist) I really don’t know what that might tell me/us.
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I really feel for you. For some of us, the ‘wear & tear’ v. PsA issue never dies. It took me many years to firmly establish with rheumys that the damage in my knees that looks like OA, is indeed OA and it is OA that is caused by PsA inflammation as well as a long period of inactivity (couldn’t walk) due to severe PsA inflammation there. What I mean by ‘establish’ is that this is currently the understanding. That could change.
In a bizarre way, I’m ‘pleased’ that typical PsA erosions have now been identified in various joints because they are taken more seriously. But it’s my OA-style knees that have caused the most trouble over the years and are probably the joints that will most likely need replacing.
Talk to your rheumy about secondary osteoarthritis. As tntlamb has said here in the past, all sorts of things happen in joints that are affected by PsA and OA is one of them. Additionally, when we walk awkwardly or cannot walk at all due to PsA, that contributes to OA. Plus OA is more likely after 60, I accept that too.
Let your rheumy know that you know that things are not always straightforward and have the capacity and interest to understand some of the more complex aspects of this disease. Nobody wants inflammatory arthritis but nobody relinquishes that dx and the vital treatment for it without an almighty struggle.
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I googled Enthesitis and got this great article. https://www.elevateenthesitis.com.
I need to ask my rheumy more questions. IDK if I have/had Enthesitis, tendinitis or synovitis, but I had severe pain in my elbows, shoulders, hands and feet that was nearly unbearable. The pictures in the article show how painful Enthesitis is…whatever it was, Enbrel “cured” it—but, again, Enbrel doesn’t fix the damage already done.
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Thank you for the thoughtful replies. “when we walk awkwardly or cannot walk at all due to PsA, that contributes to OA“…
When I read that I thought, “That’s it!” It explains my battles walking lately. My wife and I walked 2-4 miles each day only a year ago. I manage a fraction of that now. Its the combination of problems that are affecting me but the rheumatologist doesn’t get it…yet! But I’m not scheduled to see her for another 3 months. Typical of the PsA, getting moving is the hardest. As the pain and stiffness subsides, only the OA is a problem…sort of.
Nights are the worst. I have learned and taken the advice posted regarding getting enough rest but man oh man…when the knee and foot pain is screaming after 3 hours of sleep, its hard to get the necessary rest. My PsA is ALWAYS worst when I am at rest…sitting, sleeping reading etc.
I’m pretty convinced that the PsA has been sneakily doing subtle damage long before I was “diagnosed”. Walking with a jilted gate etc has contributed to issues from feet to back.
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I’m sure you might do this already but just in case you don’t - for that screaming type of ‘pain’ at rest in feet and or knees, do keep trying the hot/cold stuff. Hot for 5 mins, cold for 5 mins alternating for about 20 minutes or so. It can so help ease things or use a ‘tens machine’ that also helps. Or have a foot soak in some Epsom salts or even a bath if you can get in and out of one (I can’t).
Have you also tried a knee strap or brace just when it’s at its worst? My feet were hell initially but strapping them only made it worse but it mightn’t for you. And the pain gels like Volterol etc bought in any drug store can help just a bit a bit as well.
Also getting your knee comfy on cushions or pillows and indeed your feet can also help. I’ve just bought a wedge cushion which I often use in bed or on the sofa and it helps not only my lower back but also my feet. I don’t have much knee pain but I do have lower back pain.
Just some more ideas to ease things. If you suffer cramping (that’s so common) try a magnesium spray from a health store, works a bit like the Epsom salts.
None of these take all the pain and discomfort away but they soothe and comfort to varying degrees. Using a tens machine when resting can be seriously good for many. Easy to buy on line or in a drug store.
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Are your knees still stiff when walking? I recall tremendous stiffness and problems lifting my feet. I discovered that it is indeed possible to trip over a twig. I just can’t see that as OA alone but more likely active PsA.
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Very stiff when walking but not limited to the knees anymore…extending above and below the knee. Pretty sure its a combo arthritis thing. Pain when walking is likely the OA and pain while resting is PsA. Self evaluating of course.
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Hmmm … my knees got much better with the help of steroids and Mtx and I thought that was as good as it got … then I started Humira and finally re-discovered normal walking etc. Still not perfect, still damaged but often pretty damn good these days. I have been known to run.
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