Diagnostic quandry

A friend has a frozen shoulder on one side, diagnosed Burstitis in her shoulder in the other, as well as pain in the muscles and wrist of that arm, has had stiffness in her hands for the last year or so, and has marked overwhelming fatigue with a bit of brain fog. Her hands sometimes go a bit numb when she lies down. She is 47.

She has been to a rheumatologist who has said he can’t feel any inflammation, and has suggested fibromyalgia. He said it was common to get burstitis and frozen shoulder with fibromyalgia. This was news to me, so just wondering what sort of comments anyone else has on this?

Any thoughts from those who’ve had the arthritis / fibromyalgia quandry at diagnosis? Or from those of you who have both?

So first off, I’ve never heard of stiffness being common with fibromyalgia. That just seems rather odd. In terms of frozen shoulder and bursitis, I did a quick search. All I could find was from groups who stood to benefit from treating people, or support group type situations. In other words, medical research doesn’t seem to support that connection.

I don’t know. I would probably get a second opinion, if that’s feasible. If she hasn’t already had blood work done for inflammatory conditions, I would make sure to at least request that.

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So, I have fibro in conjunction with my PsA and this seems very odd to me. I’ve had horrible shoulder issues which, on ultrasound, showed plenty of inflammation but never has anyone suggested it could be fibro. Even when I had what I thought was muscle pain in my forearm that also turned out to be inflammation on u/s examination. And the numb hands, well that for me is cubital tunnel in the elbow which my rheumy says is caused by inflammation. And inflammation causes fatigue and fatigue causes brain fog. I think I’d be looking for a second opinion and some u/s imaging to rule in/out inflammation.

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Thanks so much for that @Stoney and @Jules_G. She has had inflammatory markers done and nothing to see there (though that’s not unusual), she’s had RF and CCP negative. Like you Stoney, I couldn’t find anything medical linking them either.

The Rheumy did refer her for US, though that was for her hands, which seem to have very low activity (this seems to be an Australian thing - they did it to me as well at diagnosis, except it was MRI). And I will suggest she get all the results sent to her GP and prepare for a second opinion as well.

Also the Rheumy prescribed Celebrex.

On reflection, my Rheumy muttered pretty much the same stuff, but when I ignored the talk about fibromyalgia he just prescribed methotrexate and steroids. She’s diabetic type 1, so I suspect steroids are off the table. But I think maybe her Rheumy is doing the same thing as mine did - just floating the idea of fibromyalgia to see if it fits (not a good start though - I told her he is on probation as she is seeing him privately!).

Jules, I don’t know much about fibromyalgia, I’m guessing that similar complementary techniques are probably used (pacing, light exercise, hot/cold, sleep quality) etc. Would there be a website you’d recommend for info (diagnostic and/or management) I could send her to?

Like me when I first started, the main role models she has had in her life have not managed well with either RA or fibromyalgia, so the psychological side is pretty challenging too.

@Jen75, I had another thought over night as your friend is a similar age I was when PsA kicked off for me … peri/menopause. Not suggesting for a moment that’s all it is but for some things like random aches, tiredness and brain fog the hormonal changes can bring may help muddy the picture. Also, of course, for us ladies it’s a common time for a/i conditions to show up.

For me I’m still not 100% convinced about fibro, although my rheumy is the last person on earth I’d doubt. The thing with a “syndrome” is it’s such a mix of symptoms they probably apply to half the population at one time or another.

You’re spot on with the things you’ve identified as helpful for management - not everyone with fibro is hyper pain sensitive to touch (I’m not) so massage, particularly myofacial release massage, can be very helpful too. Working on improving sleep quality can have a big impact, even if it needs some mediation such as low dose amitriptylene for its soporific and analgesic qualities.

The best resource I’ve found is an old fashioned book, now a good few years since publication, but written by a doctor who herself has fibro:
Fibromyalgia & Chronic Myofascial Pain by Devin Starlanyl and Mary Ellen Copeland. It’s a pretty large tome but is very comprehensive, much more than the so-called medical books I’ve read on the subject which have been as useful as a chocolate teapot. It’s also a good book when trying to see if the floating of a fibro diagnosis has much substance and I think having you as a knowledgeable friend who can bounce some of the stuff around with her can help sort the wheat from the chaff.

There are/used to be a couple of very knowledgeable ladies on the Ben’s fibro site, not sure if they are still around or not as I’ve not been by there myself for a long while.

Hope this helps your friend even just a little bit. If I remember anything else that I found particularly useful I’ll drop another post on here.

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Jules, thankyou for all that, I really appreciate it. I showed her yours and @Stoney’s answers and I think it’s already made a big difference.

I’ll mention the massage because she’s not sensitive to touch either.

She has finally started NSAIDS and they are making quite a difference (very averse to any medication that could be addictive, and for some reason she had it in her head that because NSAIDs were pain meds, they could be too). So we’ll start with sleep hygiene before moving to sleep meds.

We made the plan today to get the US and scans done, go back to the same Rheumy, but have an appointment with another for a second opinion if the first doesn’t make sense. Finally I’ll see if we can find the book. I think having a plan has helped her feel a lot better, and hopefully more info on fibromyalgia will help if it seems likely to be that.

Funny, I’m pretty sure I have a pain syndrome. It has crossed my mind that it might be fibromyalgia, but it doesn’t seem chronic enough. I’ve had it the last few days, but also many times previously, though only a very small proportion of the time. Roving pain around the joints and muscles, maybe with a nerve/tingly kind of feeling. Only happens when my inflammation is high and has set in - like the inflammation is setting off the pain circuits a bit randomly, not just in my joints. As soon as the inflammation goes down even a little, it disappears, and it’s often only present for a couple of hours a day. NSAIDs help a little, but not a lot, though they are out of reach these days. I mostly try to rest more and do more mindful exercise.

Anyhoo, that was a ramble! Thankyou again :grin:

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Definitley doesn’t sound like fms to me. That being said NEVER underestimate what bursitis can do. I have had a huge battle with it. Injections helped for about a day. Finally my Rheumy sent me to the ortho He did scans , studies nerve tests etc and finally decided that a new hip was the answer and sent the scheduler in. Instead I went to the old boy up the Bitteroot. He looked at everything and said surprised they said a new hip would have guessed a bursectomy. I told him I was older than he and back in the day we never did bursectomies because the damn thing grew back eventually requiring another and another and so on.

hard to imagine but he was actually more cynical than me "Yup, that why I’m surprised those whiz kids didn’t push it… He then lookd me over and said gimee your smart phone. Si I did he punched a bunch on it and asked for my PIN for amazon. WTF??? so I gave it to him. Your cure will be at your door in 3 days or less.

3 dyas latter there was a hug box containing 5 inches of memory foam and a gift card from him telling me to roll it out and use it on my bed. Two days later I was pain free. Good lawd he’s a genius I thought. A moth later I called him to let him know He was not a genius but a quack. He started laughing and said the real problem was I was a stubborn SOB with ZERO deductive ability.

Flip the damn thing buy a pillow wedge so you HAVE to sleep on your back and call me in a week . I did it all. "he said “still think I’m a quack” when i called back. Had to admit simply taking the pressure off the area was all it took. He laughed and said well you are still going to need that new hip but it’ll be a bit.

A slight bit of inflammation which is often overlooked by most Docs (including Rheumies coupled with normal life can be an enormous problem. @Jen75 Sleep hygiene and positioning is on the exact right path especially given help from NSAIDS. 4 inches of memory foam (good stuff) is the least and flipping it reguarlly lol…

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@tntlamb really good point - she has already talked about using pillows while she sleeps and that helps. I also think she is going too hard at life at the moment, and it is catching up. How to fix that in a rather precarious financial situation and COVID is like a whole other forum though :sweat_smile:.

I’ll go over on the weekend with a pillow wedge and talk through some other sleep hygiene stuff, we’ll talk about the memory foam too and maybe she can get some feedback from her PT on how useful that might be (I tried it but was so hot it kept me awake and defeated the purpose). I know that I’m giving myself problems at the moment because I got lazy from years of feeling good, so I un-trained myself from sleeping on my back. Gotta get back to it, I might have to get the pillows out myself :rofl:

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Hummm, my mom sewed a golf ball in the back of dads pj’s so he wouldn’t sleep on his back! Snored like a train!

There is copper infused memory foam that doesn’t have heat issues. @Amos we must be close to the same age. Mom did the same to my dad. I told her once it didn’t work. She informed me I should hear him without the golfball.

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I sleep practically sitting up for breathing issues, and having a series of pillows sorts situation out for the moment

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Thanks Leticia, I am in awe, I always find trying to sleep without easy breath the hardest!

HaHa! I’m 60 years young as of March. It was lie on the golf ball or she would have dropped it down his throat after many nights without sleep. I’ve never tried the copper/memory foam. Here I thought all along it was something to help MY memory! Didn’t help. Sleep posture is very important as the body ages. I’ve always wanted to video myself for the night to see how often I flop around and if it is pain initiated.

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Well, my dog doesn’t complain :joy:. Rather amusingly I always used to sleep on my side, then I learnt to sleep on my back for the arthritis, then learnt to sleep on my side because they said I had sleep apnoea (which has disappeared - that’s a whole other story), and now I’m back to trying to sleep on my back. Not too successful cause my tummy doesn’t like it. Maybe if I just bought a huge vat of jelly to sleep in… :rofl:

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Well believe it or not, the reason Rheumies ask how long morning stiffness lasts is to determine such things. As treatment progresses they assume If that morning stiffness goes away sooner, then they are making progress and that morning pain is age related. Its not absolute of course but generally pretty close. Speaking of snoring I was really bad I mean complaints from the neighbors bad (my closest neighbor is almost a half mile away) after I lost 100+ pounds the snoring reduced a bunch so I quit using my CPAP. It wasn’t long before I was complaining about my meds losing effectiveness. My doc listened patiently and then called my CPAP. What followed next was a come to Jesus Meeting that rivaled the one I had 50+ years ago when I mislaid the family car at a HS kegger. (It took a few days but we did find it) The CPAP was not a snoring machine she said, it was to keep me on my back, still and get a decent night’s sleep and to keep from wasting her time trying to keep me moving and that I should know better tha to think a single symptom if it went away had anything to do with anything… I think she was enjoying herself. I’m not sure @Amos if you were around when I told the story of when my Rheumie who was my daughters friend accidentally set my goat pasture on fire (the two were behind the shed trying to smoke dope) Beyond coming to Jesus that day (once the fire department left) we two dads also had the tribulation and some serious prayers from the girls for the Rapture. Anyway I hooked backup to the CPAP and danged if she wasn’t right… Flare over. Anyways a long story as to how important good sleep in the right position is…

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Great story @tntlamb! My older brother and I shared a room growing up. My snoring kept him from getting a good night sleep and he struggled with his physio exams as a result. He emptied his whole desk over the night throwing things at me…whatever he could reach including a stapler. He was too good natured to suffocate me with a memory foam pillow. What ever happened to the “Cone of Silence” on Get Smart? https://youtu.be/HWtPPWi6OMQ

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I think therein lies the answer. If she wasn’t inflamed all these might have done is upset her stomach. I don’t know much about fibro either but do know several people who have it and some with PsA too. Those with PsA always attribute ‘stiffness’ to PsA and those without never complain of being ‘stiff’ like us lot do. Ultrasound never showed anything for me despite my hands being swollen and stiff at the time.

I also think @Jules_G has a major point about the peri-menopause stuff. It’s a ‘mad’ time body wise and truly was for me like going through puberty backwards. But it can set off loads of things sadly.

I’m a snorer, a memory foam lover and a total pillow maniac. Pillows under thighs right up to the bum help significantly with all sort of hip issues, lower back issues and oddly even neck issues. We’re just back from a week staying in this windmill in Norfolk UK. The shaft of the windmill still went up the middle of it. Meaning the bed was tiny and shoved to one side of it. So only one of us could sleep on their side at any one time. I spent the week sleeping on my back with lots of pillows, PsA behaved beautifully. Snoring did not.

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