PMR and Rotator Cuff Syndrome - anyone else experienced this?

Thanks Anhaga....yes I have explained to him that I can't do the exercises as hard as someone who is recovering after a sports injury and he is now being more gentle with the massage. I still feel very sore the next day though. Trouble is I teach pottery three mornings a week and use my arms and shoulders all the time, specially when I'm throwing on the wheel. Driving is a bit of a problem too, specially on a long journey. Have you seen any improvement since you've been going to your physio?

Yes. I used to get excruciating stabs of pain in certain positions. Partly I've learned to be more careful, but I'm definitely better. However this is a long haul issue. I'm not getting better overnight plus I keep doing things which exacerbate the problem. Not like you, but right now getting ready to move and packing, painting, etc. She told me not to do these things but I've no choice really, and somehow seem to be coping for the time being.

I'm glad you feel like you are making progress. It's very hard to stop doing the things you know are going to aggravate the condition, but there are certain tasks that have to be done even though you know it's going to hurt later. I use my left arm whenever I can, but that's getting a bit sore too.

Sometimes you just have to let the muscles heal. The exercises I have are ridiculously easy but they have gradually been helping. I did a lot of painting yesterday. A bit uncomfortable overnight but by morning I felt much better, and was able to do more wall painting today, although not as much as yesterday. I believe it is more than the exercises. I think the low level light therapy helps. But I'm lucky I live in Canada and it is widely available here, having been developed in this country. There are clinics offering it in many countries, however. Google low level light therapy toronto kahn and you'll find a link.

What about tiredness as well? My husband (who has the PMR and takes Pred) is getting unhappy because he feels so tired and weary all the time

That's part of the autoimmune aspect of the illness - it makes you feel tired and flu-ey and the pred doesn't do anything about that, you have to manage it with pacing and resting and lifestyle changes.

This

https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

helps understand it a bit better - I thought there was a link on here but I can't find it. This is from another PMRGCA forum

I see. Oh dear, this PMR is so sad, life-changing indeed.. My husband started a thread as breakfast9 the other day. He is 75. He lives in France and we are losing faith in his French GP who told him to stop Pred abruptly for 2 weeks before having a blood test...he's border-line diabetic and needs his sugar monitored. He's reduced his dose from 15 to 12 and a half, but he hasn't stopped, thankfully.It is worrying because we don't trust her advice now and have no one else to ask. I think he should bi-pass her and ask to see a French rheumatolagist - there is an excellent big teaching hospital nearby. Better than a village doctor, I think. But he worries about offending the GP.. I think his health is far more important.

He was diagnosed beginning of October in London by my GP. She did tests and she gave him Pred and by end of that day he'd changed from a crippled old man with a stick to skipping up and down the living room. It hasn't lasted, though. He's so tired all the time now.

Amanda Hi

Its possible your hubby reduced his pred far too quickly ...

Good idea of yours to see a rheumatolagist instead of GP.

Your husband is lucky to have you by his side .

wishing you well..

Di

The last thing I would be worried about in these circumstances is offending a GP! As a diabetic he is in need of expert care - care I don't think the average GP is capable of, I don't care in what country they work. I have a very nice rheumatology qualified GP - but she is not capable of managing someone with complex needs. We know from personal experience.

He's probably tired because he is trying to do too much and possibly because his diabetes is out of control. So he needs expert care. Sooner rather than later. But if he is there and you are in London - he's not going to insist is he?

Husband hasn't got diabetes, but he is border-line close, and we understand now that steroids can induce diabetes and bring it on. My GP said he should have regular blood sugar checks...

I travel back and forth frequently, silly life, really.

Very interesting about keeping calcium away from the Pred, thanks for that.

I've been encouraging him to walk and climb stairs, but perhaps this is wrong and he should rest... there seems a lot to learn. Very helpful reading what you are all saying.

We should all have regular blood tests for diabetes if taking pred. My GP is fanatical about them.

Walking is good - just within his abilities and not too much to induce delayed onset muscle soreness but he will be able to build up if he goes about it in small steps. Stairs are good too - unless it makes his quads too sore when he does too much at a time.

It isn't really Type 2 - it is steroid induced diabetes and it isn't quite the same. Pred causes your liver to release random spikes of sugar from the body stores. Overall that leads to a raised average BS level, as reflected by the Hba1c. Measuring random BS levels is meaningless if you think about it - it may be mega high, it may be fine but doesn't reflect the overall performance. Like knowing the average annual temperature is unchanged - but the extremes of cold and heat have shifted. They balance each other out and it looks OK - not showing that there is a change in climate. Cutting carbs helps keep the average down - you can control those peaks, you can't control the random ones. It is sustained high levels that damage the tissues - so aiming to manage the Hba1c level is far more important than looking at single random points on the graph.

Have you said - where in France?

I agree Ptolemy about the blood work for diabetes! I've always figured it was kinda a "given"... that it was routinely done, but apparently Not!!

must you Always ask they check for diabetes??

sometimes I Can't believe I Don't have it....the way my feet are so tingly ALL the time!

I do find that some GPs ask for some blood tests and others different ones. I normally have other tests rather than just CRP and ESR.

Which is the way it SHOULD be!

I lost this thread for a while, but found it! I'm receiving a lot of Patient messages now.

Thanks, so much, Eileen, and r.d.s. and I've had a look at the Healthunlocked link. I'm trying to understand a bit more about my husband's (George's) PMR... I know he is having a blood test for CRP and HbA1c, also a list of other things, but I don't know what these things are. I thought they were to measure blood sugar. 'BS', presumably.

What you say about spikes caused by the pred is interesting. It is steroid induced diabetes they are concerned about for him. He has been very good avoiding carbs recently but I suspect he intends to let himself go a bit after the blood test.

I met my cousin for lunch today and discovered he'd had PMR for 2 years, and he has type 1 diabetes. He seemed fairly laid-back about it. He's OK now. He's 81!

The French house is in the middle of france, and a bit to the left. It's on the edge of a village in the Haute Vienne full of hills, lakes and forests. It's very French around us.

Priscilla - I just read your message and would like to jump in with 3 comments -

1. the first is that medical massage can and should be applied in a way that is condusive to healing which, in each person, is different - but the important factor is that it should not be causing more pain..... so let your therapist know that you are still experiencing post-massage pain so that he/she can adjust the work appropriately ( I say this as a professional medical massage therapist who also has PMR)
2. In your teaching of pottery there are two areas in which you would benefit from changes to your work style - the first is the repeated hard labour of throwing the clay onto the table in preparing it for the wheel - this is the most problematic and you probably should not be doing it - can you have it done by a student or an assistant ?
3. Can you improve your pottery wheel ergonomics by keeping your arms as close as possible to your body? It sounds almost impossible - but is there a way of bringing your elbows in to line up with your rib cage? If so, you will be reducing the pull/strain on your arms and shoulders.
4. and finally - while driving the car - the same would apply - if your arms are stretched out straight to hold the steering wheel then you are straining your arms and shoulders. if you can bring your seat forwards towards the steering wheel your elbows will be closer to your ribcage and you will have far less strain.

   I hope you feel better soon.

I have an internet PMR friend not very far from you - I can't remember the village but I think it is near Brive le Gaillarde on the way to LImoges. They shop in Limoges at least. She set up and runs the original forum that was set up by the NE of England support group and has dealt with PMR in the French system for years.

The link to the NE forum is the third on this post:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

(It does still work although it is now a tapatalk forum) and she is christineb you see on the page that comes up. It isn't very active now as a result of horrendous server problems a year or two ago but we are all still in touch via it. I'm sure she'd love to talk to you and may be able to give advice.)

CRP is similar to ESR in that it is an indicator of inflammation in the body. Hba1c is a reflection of the average BS level over the previous 3 months - which is a far better indicator in than random BS levels which are very hit or miss. Or is it the other things you don't know about?

OK - I was hallucinating! She is in the north, not far from Bellac. I knew it began with a B ....

It's ALL the things to do with the blood and urine tests that we don't really understand at the moment! Must George have the Hba1c test each month? I'm pretty sure that's what my English GP told us should happen. We must get him referred to a rheumatologist as soon as possible.

Thank you very much indeed for mentioning your PMR friend in Brive or Bellac - both are fairly near to us - and I will certainly try to make contact with her.

Thanks.

Thank you Ricky for your reply, and your good advice. Luckily I have a very helpful bunch of students who know my situation and will help out with lifting and moving heavy things like bags of clay, also our clay is ready mixed and can be thrown straight from the bag. Certainly kneading clay is a strain and I do that as little as possible. The throwing situation is a bit more problematic....I only need to do it to demonstrate, and I use a small piece of clay, but if people can't centre properly in a one off class I usually do it for them which needs a lot of muscle power, and I do it from a standing and leaning over position. You are right in that I should think of ways to limit the things that give me grief and get round them. The driving thing only bothers me when I'm turning left and need to use my strength to turn the wheel which doesn't work well if I hold it from underneath, but after a long drive I do notice it. I drive a small van and the steering is supposed to be power assisted! (not very)

Lastly, yes, my physio is very considerate and asks me to message him with how my shoulder is after a session, so he knows what works and what doesn't.I will persevere and hope for some improvement, just don't want to get as far as the hospital just yet!

They usually do them every 3 months - that's what it reflects so much more often isn't a lot of point but I suppose initially they will show a trend if it is rising or falling. If you can get a list of the other stuff maybe we can help?

I've told her and that you may "call by" on the other forum as the simplest way of making contact.

Anxiety rising as we have a meeting with the French GP tomorrow morning - the one who told 75 yr old husband, George, to stop Pred abruptly for 2 weeks (before the blood test he's just had). He did not stop! - on advice from my UK GP, and help from this forum.

George anxious in case she tells him the blood test now shows he does have steroid induced diabetes.

If he has, what should we expect the French GP be advising, please?

Cut carbs. And yes, I know how hard that may be for a 75-year-old in France - I'd struggle a bit too!

However - what test did she do - do you know? Random BS levels really are pretty meaningless and beyond that it does depends what the Hba1c turns out to be. And frankly - with the best will in the world, at 75 it does become slightly less critical just how well the diabetes is controlled. If you are 40 and have high BS the potential damage over the rest of your life is rather greater than if you are already mid-70s.

Cross the bridge when you get to it! Diabetes doesn't usually develop in a few weeks, even on pred, and it won't be sorted in a few weeks either. My friend has developed Type 2 and has an Hba1c of over 60 if I remember rightly - her GP is very laid back (too laid back) and doesn't expect it to fall soon. It won't if she continues having 2 rolls and jam for breakfast as she did while I was there. But the GP says that is fine! He belongs to very outdated school of thought: it is calories that count, not carbs! Despite living near Newcastle who have done groundbreaking work on reversing Type 2 diabetes:

https://www.diabetes.co.uk/news/2017/dec/newcastle-diet-achieves-type-2-diabetes-remission-after-one-year-of-direct-trial-98030767.html

Let us know how he gets on - though I may take a day or so to reply, I'm travelling so internet time may be a bit restricted the next 2 days.

Thanks very much for this, and for the link to Newcastle stuff, which looks helpful, and really interesting.

Well, we went to the French GP this a.m. She told us G's HbA1c is raised and this means he has diabetes, or nearly.

In fact his HbA1c was 49 in the test taken last week.

It was 55 in the UK test taken 1st October.

I think, from Newcastle stuff, 49 is still quite high..

Anyway she's banned him from taking Pred and given him Ibuprofen instead (which he shouldn't have due to his heart medicines)!!

We are feeling pretty worried. The good news (I hope) is she's referring him for an urgent appointment with a rheumatologist in Limoges.

We are so exhausted by all this, and we just adopted two French cats who keep sitting on me..

I hope your travelling goes well in winter weather..

https://www.diabetes.org.uk/guide-to-diabetes/managing-your-diabetes/hba1c

https://www.diabetes.co.uk/what-is-hba1c.html

If he were diabetic a target Hba1c would be 48 - so he is obviously getting there! By cutting his carb intake he should be able to get the Hba1c down - normal would be under 42 but as I say, diabetics on medication would be told to aim for 48 in most cases. The links explain things well.

What a stupid woman - I thought some UK GPs were a bit dim but that beats all! Ibuprofen does NOTHING for PMR except increase risks for cardiac patients... Not to mention its gastric effects. And yes, pred increases the BS levels BUT all it means is that either you have to be stricter with diet or you add in medication.

I'm not surprised you are exhausted - I probably would be too! I do hope an emergency rheumy appt is quicker than in the UK!

I'm near Venice in an airport hotel - the temperature is in double figures here and only just touched freezing near Cortina at the top of a pass, 1600m or so. So this far has been fine! We'll worry about getting home in 3 weeks time 😉

All the very best!

Amazed you sent help when you're near beautiful Venice! Airport hotel perhaps not so exciting. But thank you, very much appreciated.

Poor husband has rolled over on back with legs in the air about the whole thing. I was so worried that he had no Pred left. So, yesterday I went behind everyone's backs. I made an appointment with a new doctor for Friday am. I went to Pharmacie and asked for an advance on a prescription for Pred - which she kindly gave me as she knows us - and then felt SO relieved he had Pred again.

Now we are both quite worried about what I've done! I doubt they'll put me in prison. Hopefully new doctor will be better.

I spent a month in Venice when I was ten in 1953 when my father was working there., and have wonderful memories. It was very different from now - pretty well no tourists at all!

Thanks again. Sounds as if you're having a splendid trip.

Been to Venice loads of times in the past - last time put us off as it was full of Asian tourists blocking every bridge taking selfies.. The airport hotel has a very good restaurant - roast goose, yum, yum. And a gluten-free chocolate and almond cake dessert!

Our pharmacy will sell me anything in advance, i just have to pay the full price and if I don't go back with a script all that happens is I don't get the cost back.

Went to new doctor, great relief, she knows what she's doing, we will move to her.