Arm movement

[TedBruno17]

Have has GCA and PM for about two years. Has anyone anything encouraging to offer re lack of arm movement. I can’t get my arms above waist height despite exercises and physio. Very depressing. Does it get better with time?

[DorsetLady PMRGCAuk volunteer]

You did mention one shoulder giving problems about 2 months ago…sounds as if both are now affected and it has got worse .. if that correct?

Did you seek medical advice after that post?.. is physio and exercise a result of that?

You obviously need to know what is causing it, and if physio and exercising isn’t helping then you need to look at your PMR/GCA. It could be that have gone too low on meds - what dose are you on now?

If it is your PMR/GCA we would normally suggest increasing Pred - initially treating as a flare. But if it’s caused by something else totally unconnected we would suggest medical input.

But more info please might help us decide..

[TedBruno17 in reply to DorsetLady]

Have had MRI which shows Rotator cuff tendons are “done” but I’ve read so many comments on this site about others struggling with lack of arm movement that I am trying to put it down to PMR. Maybe it’s time to accept that arm movement isn’t going to come back. Thanks for reply

[DorsetLady PMRGCAuk volunteer in reply to TedBruno17]

I think I did discuss RC previously -my left one is problematic but not as bad as yours. It’s a blooming nuisance isn’t it! (Polite wording there!)

You don’t actually mention pain -is that why you cannot lift them? Or is pain there without exercise?

[TedBruno17 in reply to DorsetLady]

No pain thankfully unless I really try too hard to elevate arms. The arms will not move past a certain level. Literally no power at all. Yes, it is a “blooming” nuisance. Gets very depressing at times. Must STAY POSITIVE !!

[DorsetLady PMRGCAuk volunteer in reply to TedBruno17]

Yes you must -but it’s flaming hard at times…,😊

[Excelsior80]

my husband (age 68) has arm movement problems from a minor fall on ice last january, no pmr involvement. He's been doing physiotherapy exercises ever since and just recently its starting to improve. It can take a long time even for ordinary problems.

[Artandpoetry]

Just in case my experience can help.Im on my second journey on pred. First journey was much too fast. This time round, I spent many months where I could not raise my arms. My husband had to hang washing out and reach up to shelves. When I reached 7mg I went super slow - half mg every 2-3 months. No problem with arms now. Just an old shoulder injury. It really is “slower the better” . Good luck with your journey. I’m down to 2 mg and just keeping my fingers crossed.

[TedBruno17 in reply to Artandpoetry]

Many thanks for reply. Just needed some encouragement. So frustrating when I can’t even comb my hair. I think the rotator cuffs are quite probably the culprit but when my flexibility improves or worsens I feel PMR is the reason. Down by 2mg to 7mg fairly quickly but I have had the arm problem from a much higher level . I will live in hope but it does take all my powers of positive thinking !!

[PMRpro Ambassador]

If it is due to PMR, more pred might improve things. But if it is due to rotator cuff issues - you need medical input, physio if it is in a state that can be improved, possibly surgery if that might be an option.

But if the cords on your blinds are broken - you wouldn't expect them to go up and down would you? And all the postive thinking in the world wouldn't change it I fear!!!!

[TedBruno17 in reply to PMRpro]

Sadly,

you are probably right. Many thanks

[Grammy80]

I wanted to add that my husband, like Excelsior80 's, fell in our drive last year and had rotator cuff tears. X-rays showed old bicep tears as well. He is 81. The surgical repair would have been too much and he began physical therapy. He went faithfully for five months and now has no pain and full movement; a very positive outcome. Committment to that may be worth a try and give you both relief and added motion. My best.💞

[nallufl24]

That’s interesting. One of my symptoms of GCA was that I couldn’t lift my left arm. Originally doctors thought I might have had a stroke but I did not. It was awful. I couldn’t wash my hair or do anything where I needed to use my arm. I went to a neurologist who did some tests. Everything was normal. I can’t remember the term they used but it was mono something or other meaning a nerve was affected. Anyway, I got better with therapy and after 3 months with prednisone for my GCA I got the use back. If I didn’t do therapy and just did prednisone I don’t know if it would have gotten better on its own.

I never heard of a nerve being affected by GCA and neither did any of the medical personnel at the hospital.

[PMRpro Ambassador in reply to nallufl24]

GCA affects the blood flow to both the optic nerve when it results in loss of vision and also the 8th cranial nerve which can affect hearing and balance. GCA can cause strokes by interupting blood flow - also affecting nerves.

So really, to say they'd not heard of GCA affecting a nerve suggests a total lack of understanding of and awareness about GCA in general.

[nallufl24 in reply to PMRpro]

I guess I shouldn’t be surprised. Sometimes I felt like a freak because I didn’t have classic GCA symptoms and a hospital rheumatologist (not my doctor) kept saying they threw away the text book with me. I didn’t realize til months later I was not a freak after all. There can be many signs of GCA.

[PMRpro Ambassador in reply to nallufl24]

Exactly - it really isn't impressive that we, as patients, frequently know a lot more about how GCA presents than the so-called experts we have to submit to.

[AtopicGuy]

The big questions are: could you raise your arms when you were on a high dose of steroids? Did your arms worsen as you tapered down the dose? If you tried another high dose of prednisolone, would the mobility return?

GCA & PMR are not the only autoimmune diseases that can cause shoulder immobility and that respond well to steroids. There are also neurological conditions where autoimmunity causes the nerves to not properly signal the muscles to fully contract. Examples are MG (myasthenia gravis), CIDP (chronic inflammatory demyelinating neuropathy) and MS (multiple sclerosis). The problem begins as a kind of muscle weakness, where the shoulder muscles are not strong enough to raise the upper arms above the head against the force of gravity. Try lying flat on a bed, or leaning forward in a secure chair: will the arms move into the "hands up!" position now? Do the muscles feel swollen and stiff, or can they freely wiggle the joints in this horizontal position? Is it the joint itself that is injured (arthritis), rather than the nerves or muscles?

Except when I'm on steroids, I've not been able to raise my upper arms above the horizontal for several years. However, they will go all the way to my ears if I lie flat or lean forward first. Once there, the joints, deltoid muscles and rotator-cuff muscles work just fine. I have an appointment with a neurologist next week.

[TedBruno17 in reply to AtopicGuy]

Many thanks for your info. Unfortunately I can’t remember when my arms last worked properly and at what dose. Interestingly (despite MRI showing my rotator cuff tendons are “done” both sides) following your advice I find my right arm will lift when I lean forward in sitting position !! Would love to hear what your neurologist says and I can then decide whether or not to follow the same route.

Good luck !

[Gimme]

If it really is a rotator cuff injury, as has been suggested, it can take months to heal. It is not one of the most feared soft tissue injuries by athletes and sports persons without good reason. It took about 6 months for mine to heal. It often starts from repetitive movements with the arms above the head, and often seen in javelin throwers, swimmers, weight lifters etc. As an aside, you don't sleep with your arms behind your head or above your head on the pillow, do you? As far as I am aware, I don't think you can do much about it, except for rest it and wait for it to heal. That said, you really need a proper medical diagnosis, as rest is one thing, but complete inactivity is not so good as you do not want to lose mobility, for this kind of injury and you need advice on how to help it heal.

That said, I would expect the PMR to be a much more likely culprit, as inability to lift arms is often listed as a classic symptom. Assuming you have already ruled out an actual mechanical injury, due to a fall for e.g., and that there are no postural or repetitive activities that might be responsible, like I have already mentioned. If it is due to the PMR, that begs the question, are you taking enough pred? PMR can make your muscles weaken due to inactivity, but if the physio hasn't helped, that would seem to make simple weakness a less likely reason.

Anyway, I am no doctor, and I think it would best to discuss with them. If it isn't the PMR, then it may need proper investigation. If you have already discussed with the doctor and whatever was suggested is not working, then you need to go back and tell them. For that reason, I am loathe to suggest the usual, like either heat or cold compresses, or gentle mobility exercises, when it doesn't sound like you know the reason for it. You could make it worse, if you chose the wrong course. So you really need to know what is causing the problem.

[Gimme in reply to Gimme]

As an addition to my first post, when you speak to the doctor, be sure to be clear what everyday activities, this problem is causing you. They probably won't worry too much if you are unable to enter the next weight lifting world championships, at our age, but if you are unable to do the basics of self care, such as washing, dressing, cleaning your teeth, preparing your meals, hoovering or cleaning the windows, opening tins, or feeding the cat, then that needs to be taken seriously and they are much more likely to take note.