Frozen shoulder/shoulders, have you had them?

General
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I’m just on the tail end of a frozen shoulder (meaning it is well on the way to fully recovered, not quite though), and am wondering just how common these are in PsA, compared to the general population.

Mine was the “adhesive capsulitis” flavour, with no calcified tendon. It has mostly recovered in less than a year (mind you I was taking tilcotil and Mtx, and had a couple of cortisone shots in it).

I can’t say I noticed any pain in the shoulder itself (possibly from the meds), although AC joint was very tender when poked at (and still is lol). The pain from it was like something grabbing my upper arm, if I tried to move my arm beyond it’s limited range of motion (at the worst time this pain was enough to drop me to the floor, but only last up to about 20 seconds at a time), it would grab mostly from the reflex type movements or in my sleep. The rest of the time the shoulder would feel uncomfortable but not painful as such.

So, tell us your stories of frozen shoulder… I’m keen to know just how common this is in PsA

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I have had two shoulders replaced not certain that it was entirely PsA as a young man I had a bad habit of jumping out of airplanes to hike in Southeast Asian jungles, and riding motorcycles and wasn’t always as careful as I should have been and dislocated them a timer two each.s

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Ermmm… yep… that’d be pretty hard on your shoulders!!! I have this saying that goes “we spend the first 40 years of our lives abusing our bodies, and the next 40 regretting it” lol

I know “frozen shoulder” is fairly common after age 40, and there are some things that seem to predispose people to them, sometimes they can simply come on idiopathically (with no apparent reason)… am just curious if this is more common in PsA or not :slight_smile:

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I haven’t had the frozen shoulder problem, but I HAVE had a frozen knee problem. :slight_smile: You raise a very good question. :slight_smile:

I’ve wondered for years if PsA predisposes us to adhesions or excessive scar tissue. I’ve had 9 knee surgeries (7 on my right knee) starting in my 20’s. I’m currently turning 45. I was only recently diagnosed with PsA in Nov. 2016, after 4 yrs of my Rheumatologist suspecting it.

I believe my first exploratory knee scope in '98 was due to a PsA flare, as the surgeon never found the problem. We’ve only recently pieced together the puzzle. :slight_smile: The recovery was awful, slow, with seemingly endless inflammation. I’ve always been a major athlete and highly motivated, and followed directions to the letter. My knees would not cooperate though and continued to deteriorate. Each surgery resulted in more than the usual scarring. I healed very slowly. Inflammation was always a lingering problem. The left knee stabilized 15 yrs ago, but we call my right knee the problem child from hell!

The most surprising change was at age 37… I had gone 8 yrs with no major knee problems/pain other than mild arthritis. Things suddenly went south with pain coming out of nowhere. I didn’t injure it or fall. I found a wonderful surgeon (one of the best & sought after in the United States) in 2010, and he’s performed the last 5 surgeries. He’s the one who sent me to one of the top Rheumatologists in St. Louis.

After the 2010 surgery, my knee no longer looked normal on the outside. After the 2013 surgery, he was now spending half a procedure cutting out massive amounts of scar tissue from previous surgeries before he could even see well enough to fix the current problems. He saw a pattern that could no longer be written off as “strange.” He said I make enough scar tissue for 20 people. He’s never seen anything like it. By 2013-14, I knew that knee would never look normal again.

In 2015, all hell broke loose. I woke up one day and could barely walk. Things had worsened over 4-6 weeks (no injury or fall). All of a sudden, I was borderline knee-replacement material. A simple arthroscopy revealed a 2-inch by 1-inch hole in my articular cartilage, and it was contained with clear margins. I could replace it, but due to my age of 43 and athletic background/lifestyle, I was a good candidate for ACI–Autologous Chondrocyte Implantation–because he knew I would/could do the year-long rehabilitation. It would buy me 5-10 yrs before a replacement.

We proceeded and all seemed well until 6 weeks post-op. I wasn’t gaining range of motion, even with 7 hrs/day in the CPM machine. I had nothing but complications all involving excessive scarring/adhesions. I just finished 19 months of physical therapy today—all because the 8 weeks of normal post-op immobilization caused my knee to form so much scar tissue. I lost ALL range of motion. :frowning: I did everything right and it didn’t help. It took 2 more procedures in early 2016 to cut out adhesions in the knee, then break up adhesions in my quad muscles—finally achieving full range of motion in June 2016. It wouldn’t “stick” for another 7 months (the 14 month mark). By month 15 (March 2017), I no longer needed a stationary bike to loosen it up every day. I was finally waking up with “Full Bend”.

They never thought I’d walk right again, but we kept at it. I was blessed with an expert therapist in ACI rehabilitation, who forced it to bend daily, then every other day for months. He worked miracles for me even recently, manually breaking up scar tissue and helping with nerve impingement from more scar tissue wrapped around the bone where a nerve passes through. But now we know what to expect in a few years when the ACI wears out and I eventually need a replacement. My PT said he’ll help me do it all over again…because it WILL scar again, and we WILL have to force it to bend again, and we WILL NOT be able to avoid it!!! :(.

So yeah, I’m wondering about other’s experiences too. I keep wanting to know if I’m the only freak of nature out there. :slight_smile:

—Lisa in St. Louis

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Wow, Lisa… what an ordeal!!! You won’t be looking forward to the next round, I feel for you!!! :frowning_face:
Makes my frozen shoulder seem pretty insignificant :slight_smile:

I don’t know much about frozen knees (and seriously hope I never need to, the shoulder has been enough and I got off pretty lightly with that from all accounts). I have read though that one of the treatments for frozen shoulder can involve forcing the shoulder through full range of movement while under general anesthetic, I hear there is a chance of breaking the arm during the procedure and have also read where sometimes the procedure can result in more scar tissue (and therefore more adhesions)… I’m glad I never had to make the decision whether to try the procedure.

I was given exercises by a physiotherapist that are supposed to ease the shoulder to a wider range of motion but had little success, and a rhuemy told me I would be wasting my time to do them, so really apart from the cortisone I have just let my shoulder do it’s own thing while occasionally gently testing it’s range of motion. This seems to have worked for me, now I have almost full range of motion, except when it comes to putting my hand behind my back (at it’s worst I couldn’t get my hand past my hip, now I can get it to nearly half way across first butt cheek lol).

Now you have me wondering… as psoriasis is basically “over production” of skin cells is it perhaps possible to have similar issues with scar tissue from it? An interesting question… I wonder if anyone else on here has had similar issues.

Thank you soo very much for sharing the story of your knee… I do hope the next won’t be anywhere near as severe!!!

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I’ve seen a few people in PT with frozen shoulders though, and I’d say it’s VERY debilitating, so I feel for you. :slight_smile: I’ve also learned everybody has something (ha), and I know it can always be worse. I apologize for so much detail last night (ha)! I couldn’t sleep and got heavy-handed. :slight_smile:

I never thought about the correlation between overgrowth of cells with psoriasis and possible overgrowth of scar tissue. My psoriasis is extremely mild and not noticeable to most, so I tend to forget about that aspect of PsA sometimes.

I’m very glad you’ve been able to make some gains in your range of motion though. Whatever success you get in whatever way works for you is truly something to celebrate, and I hope things continue to improve, even if slowly. I too hope others chime in here. I’m glad you brought this subject up. :slight_smile:

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Oh, the shoulder sure can be very debilitating (I have seen others with them too, my sister has had both shoulders go, one of them twice), they can be extremely painful too… I guess I was lucky I was already taking meds when it started and am thinking that’s probably how I got off soo lightly in comparison to many.

Mine was progressive and I didn’t really pay much attention when I started to notice that I couldn’t reach as far up, across or behind as normal (would get mild pain in my arm when I tried to), and as the pain wasn’t in the shoulder itself I never thought of it coming from there, it took at least 2-3 months (possibly a little longer) from that stage to get to the point where I could only lift my elbow out from the side to about 15 degrees and any movement beyond that would have me grabbing my arm and swearing lots haha for about 20 seconds (excruciating is the word I would use) but it would settle quick and as long as I kept it within it’s range of movement (as limited at that was) it was barely noticeable. Fortunately that stage didn’t last long (maybe 4-5 months) before it started to ease a little. Getting washed and dressed was a real mission. Oh, and it was my left shoulder that went (unfortunately I’m severely left handed too lol)

Yep, everyone has something, and so many of them seem soo much worse that what I go through :slight_smile: Please, no need to apologize for the detail!!! I find it really interesting to hear others experiences, and as selfish as it sounds it kinda helps me to feel a little better about my own situation too, helps to keep me grateful it’s not worse lol

I have no idea if there is any correlation between overgrowth of scar tissue and psoriasis (just me, thinking outside the box, as usual), but with the psoriasis, skin and fingernail tissue can both produce rapidly, so maybe scar tissue can too (hmm… isn’t that how the “koebner phenomenon” works?)… I was always happy about my very strong fingernails that grew quickly, now I realise that was probably from the psoriasis lol

Yep, my shoulder is almost back to full range of motion (except behind my back, and that is still improving), from what I hear that’s a pretty good result, not everyone gets that much movement back.

Thank you so much for your contributions to this subject, most appreciated!! Yes, it would be great to hear other’s experiences too!!

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I had a guest lecturer by the name Dr. Paul Grant of who called Psoriasis “keratin fertilizer” (keritin is what hair nails and top layer of skin is made out of. He was musing in class one day that perhaps there was a way to introduce psoriasis to burn patients to recover their skin faster and someone should do a study…

Once again My big mouth got me into trouble when I asked why bald people had psoriasis.

He got the last laugh though He became amulti-millionare for a drug he adpted called Minoxidil (Rogaine.) So apparently there was something to the fertizer theory.

Big lesson @janson is nothing is too far off the wall.

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hahaha lamb, that sounds like the sort of thing I would come out with lol

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@tntlamb: Thank you for the smile!! Hmmm… sometimes we should maybe learn to keep our mouths shut and run with the ideas ourselves, then we too could be wealthy :wink:

Unfortunately I don’t have the resources it would take to explore the ideas sighs

I kinda feel that sometimes science gets bogged down in details and “science”, and the simple (and perhaps obvious) can be overlooked, while busy looking for a complicated answer. But then again, perhaps the “simple” has already been ruled out, and my input may have absolutely no relevance at all… it really is just thoughts out of the blue.

Thank you for the “lesson” :smile: I shall try to not take too much encouragement from it :laughing:

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I’m confused? You say it came on slowly? My PT said it comes on from one moment to the next? When my wrist was hurting and I didn’t move my shoulder as much (wrist still hurts I just move my shoulder now more) I kept getting pain in my shoulder that kept getting worse until I moved it around and it would completely go away… my PT said it couldn’t be frozen shoulder because that would go from nothing to unable to move… I’m sure it wasn’t frozen shoulder but now I’m confused about his reasoning?

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Hi Cynthia, I think there are different types of frozen shoulder, mine was what they call “progressive” which means it can take up to nine months to get as bad as it’s going to get… yes, you can get a frozen shoulder from not moving it, that is correct, but there are times when they can come on “out of the blue” regardless of how much you use your shoulder, some can even come on from overuse too. I hope that helps to clear that up for you :slight_smile:

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Do other people have problems with their shoulder blades? My right is really quite painful over the last week. It has niggled in the past, but now it’s really quite painful. I’m guessing it’s a muscular or tendon thing - use of mouse, use of walking stick not helping, I suppose. At least joint pain goes when you sit down, but this is like a general bad back - always there! Votarol and painkillers help, but normally these things clear up quite quick.

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I’ve had similar thoughts. Not specifically about burns patients, more about whether the processes involved in Psoriasis conferred an evolutionary advantage at some point. I heal quick, my ancestors might have survived a scratch from a sabre tooth tiger better than some …

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Yes, my psoriasis is very mild, but my skin has always healed super-quick, and I’ve never got infections, even from cuts that were notorious for them (e.g. coral cuts).

I nicer thought to connect that to psoriasis (I didn’t get it until 34 - about 3 months before the PsA). But there might be something in it!

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Hmm… this is interesting… over the years I have often commented on how quick my hair grows, it got too expensive to keep it cut in a nice style as I would need to get it trimmed or coloured every couple of weeks to keep it looking good, so I ended up just letting it grow au’ naturale (grey and all) :wink: My fingernails were a bit the same… always long and strong with very little care… I was kinda proud they were like that, now I realise it may actually have been psoriasis that kept my nails like that… I now wonder if I might have been better off to have neither strong, quick growing hair and nails and no psoriasis… ahhh… but such is life :sunny:

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I had pain in my shoulders before I took Enbrel, but then I had pain in my elbows, wrists and fingers, too…I always said it was like the Tin Man from the Wizard of Oz, needing oiling every time I didn’t move them for a couple minutes…

I think Cynthia, I had the same thing as you–it hurt to move at first but then after a short time–just a few movements, it would be normal. Trouble is, a person can’t stay in motion indefinitely, so this pain was hundreds of times throughout each day!

That’s the biggest improvement I’ve noticed since being on Enbrel. Once-in-awhile, when I do get that pain/stiffness, I worry that Enbrel is fizzling out!!!

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Hi Grandma_J… I think we are talking about different things here… the pain that reduces with movement is most likely from the arthritis, and no doubt it can be extremely painful.

A “frozen shoulder” is when the whole joint capsule adheres (tendons, ligaments etc) and the shoulder will not move at all… for me there was very little pain in the shoulder itself, the pain was felt in the upper arm… I only felt it if I moved my arm in ways that had the shoulder trying to move… it is a progressive thing and took a couple of months (or so) to freeze up completely.

To start with it was noticeable when reaching upwards, then when trying to reach the back of the other shoulder, or my back (to scratch it). By the time it reached it’s maximum level I could only lift my bent arm out from my body about 15 degrees, and use my arm in a forward motion (as you would with a saw) maybe 6 inches (out from my body), and I couldn’t put the arm behind me at all, it would only go as far as my hip… if it was moved outside of it’s range of motion the pain was excruciating, to the point where I would drop to the floor grabbing my arm swearing (badly lol)… this would last about 20 seconds til it eased off and then I was back to barely noticing it. And it would wake me a few a times a night, as you don’t consciously protect things when asleep so would move the wrong way and it would set the pain off.

It all started about October last year, it was December when I saw a doc about it, and now it is almost back to full range of motion (can only get my hand to waist level when putting across my back though) and there is no noticeable pain with it now.

Although specific exercises are the recommended treatment for frozen shoulder, the rheumy I saw in March (the shoulder was really bad at the time) said that no amount of exercise would fix it, it would just sort itself out in it’s own sweet time, which is what happened, although I did keep using it as much as possible within it’s range of motion.

As I understand it “frozen shoulder” (adhesive capsulitis) is a specific diagnosis and is fairly common once over 40, sometimes it can come from not moving the arm enough (after a stroke or surgery), sometimes from over use, or arthritis, or it can just happen with no reason.

It seems the average time for it to resolve is around the 3 year mark… so I was very lucky that mine was only an issue for a little over a year (the 2 cortisone shots I had in it might have helped reduce the duration too).

I was curious as to whether or not this might be more common in PsA people, or not.

I do still get the arthritis pain in both shoulders, and elbows, etc, etc, etc… fortunately, for me, the pain I get from the arthritis is mostly mild (possibly due to meds), and I have very little stiffness from it too (except in ankles and hips).

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Oh Janson, that sounds horrible!!! Well, at least it resolved itself!

My mom, who’s 92 and doesn’t have PsA, is having some terrible pain in her right shoulder. She’s on Tramadol and she ices it, but she’s really having trouble…I wonder if it’s frozen or bursitis or what?

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oh gosh… bursitis can be very painful too… My Mum ended up with that in a shoulder after walking into the outer edge of an open door… I think the doc gave her some anti-inflammatories for it (don’t quote me on that though). Has your Mum seen a doc for it? They can tell quite easily if it’s frozen, simply by the limited range of motion.

Yep, it made life pretty awkward… getting dressed, bathing, and washing hair were difficult and painful exercises lol it’s surprising how tricky it can be to even down trousers to go to the loo with one arm :laughing: Yes… I’m really glad it sorted itself out!!!

I do hope your Mum’s shoulder comes right soon for her!!!