why so much muscle mass loss?

[merril]

Why have I lost so much muscle mass in my arms, and now see the start in my legs?? Any advice that will help? I am waiting on results of blood tests but last tests were ESR only one above normal , and CRP20. I am almost 90, does that make a difference?

[SheffieldJane]

Probably because we do less, you could try Yogabonnie’s class. Swimming, Tai Chi and Yoga is good for this general weakness we experience.

[Constance13 in reply to SheffieldJane]

At 90? You must be joking! Most are happy if they can walk for 10 minutes and at merril's age a little chair exercise would probably be all she could manage.

She also (possibly) has the beginnings of PMR. Most of us couldn't move at all when this pesky illness hit us. You know that!

[SheffieldJane in reply to Constance13]

No, not joking.

[merril]

Thank you for that info, I should have added that I am a newbie, waiting for a possible positive result of PMR, and with a number of underlying health conditions. Meanwhile this muscle loss seems to have come pretty suddenly and I was thinking more of gentle exercises because my weekly class closed when the first lockdown began in March. Any advice would be welcome.

[Kendrew in reply to merril]

Hi merril. I'm 62, had PMR for 18mths and been on prednisolone during that time. Prior to diagnosis, I was VERY active at the gym and very fit. Over the past 18mths I too have noticed a massive reduction in muscle mass and know that it's probably down to a combination of reduced exercise, steroids and PMR. I've lost a lot of my strength and my calf muscles seem almost non-existent....as do my glutes now!We do indeed lose muscle mass as we age, but these other factors have definitely contributed. Now I can only manage a daily 30min walk at moderate speed.......but I have just joined yogabonnie's Zoom yoga class and yoga is apparently good strength training....and can be as gentle as you need to make it. I've increased my protein intake and will continue with my gentle exercise, as being a 'couch potato' is not an option and I believe would only speed up the muscle wasting process. Anything you can do is better than nothing.I'm not an expert....this is just my own personal experience.....but if there are significant points that need mentioning, others will be along.

I wish you well merril, and try not to worry too much as you're not alone in your concerns.

[HelenDaisy in reply to Kendrew]

You are right in all respects. I've had PMR 18 months, and I'm an exercise instructor. I've struggled at times to keep my classes running, but have 'subbed' them out sometimes. Currently I am teaching them on Zoom: a gentler one and a high intensity one. Why do I keep it up? For all the reasons you mention! I love what I do, the fun, dancing, fitness and connection with my students. I've done it since 1983, so it's 'who I am'. I hate my fat belly, but my muscles are still in good shape, which is vital. I've gained 20lbs, but my BMI is excellent. We got a puppy before lockdown in March, so walk every day, which is great exercise. A little weight work (Cans of beans will do!) will help. Good luck to all PMR people who are trying to stay fit. There is lots of online content out there.

[Kendrew in reply to HelenDaisy]

I'm amazed you've managed to keep going with so much exercise. Well done. Whenever I attempted a scaled down version of my workouts, it still often proved yoo much and I suffered consequences! I've only put on 8lbs but really want to gently build some muscle back. Just keep trying.😀

[Constance13]

Sorry Jane!😕 That sounded a bit harsh. No offence meant.

"Humble" Constance. 💐💐

[SheffieldJane in reply to Constance13]

My father in law went swimming in his 90’s and walked his elderly little dog.

No offence taken by the way. Humble made me laugh!

[Constance13 in reply to SheffieldJane]

Did he have PMR and GCA?

[SheffieldJane in reply to Constance13]

No. Cardiac issues though. I couldn’t move when first diagnosed with PMR.

[Daffodilia]

Some gentle Pilates might help?

[Triumph650]

At 90 would say muscle loss is not coming back but that does not mean you can't exercise.

I am 68 and a keen cyclist, I lost 7Kg in a week before finally being diagnosed with PMR. I have never seen such muscle loss.

[PMRpro Ambassador]

Are you already on pred? And have they checked the CK (creatine kinase) blood test? There is a muscle disorder that can appear very similar to PMR (and is also managed with high dose pred) but where this blood test is raised because of the damage done to the muscles and muscle loss.

[merril in reply to PMRpro]

Not yet confirmed for PMR or GCA but discussing last week's blood tests with GP on this Monday's phone call . Surgery has known I have been fighting an infection for the last two months but lack of continuity has meant that the whole picture has not been seen by one doctor, (that's my own assumption). Decided to be my own advocate, so seeing the same GP for the second time.

[PMRpro Ambassador in reply to merril]

Infection? On what grounds of proof?

[merril in reply to PMRpro]

Hi PMRpro. That was the reply to me from the surgery when I phoned for the results of a blood test two months ago. Added to that reply was ..but we don't know what the infection is!!!. Then because my FIT was positive I had a CT scan that showed NAD! I was given to understand that a follow up would be given, but have heard nothing since. I guess things are so chaotic here, healthwise, that continuity has 'gone out of the window'. I should add that I was a registered nurse many moons ago but had never heard of PMR or GCA.

[Constance13 in reply to merril]

It only really became noticed as a 'real' illness until about 1958!

[merril in reply to Constance13]

Hi Constance...Your comments re exercise at my age were spot on.👍

[PMRpro Ambassador in reply to merril]

Mmmm - but were they assuming that it was an infection that was making the ESR and CRP high? Infection is one cause - inflammation is another.

[merril in reply to PMRpro]

Who knows for sure? I don't think that it is a doctor who gives out the results and because no follow up was suggested that will have just stayed on my notes somewhere. The main focus has been on my back pain since I had a herniated disc four years ago, with two epidurals and a flare up in January this year. See a pain management consultant privately and in March his initial diagnosis was spinal stenosis, Lockdown came and arrangements for an MRI were put on hold not least because I have a pacemaker, and someone has to be on hand to make adjustments during the scan. All downhill since then. But, I still have enough focus to be proactive at times, and this forum and all it's members who have contacted me have been godsend.👍👍

[PMRpro Ambassador in reply to merril]

No results should be given out with having been approved by a doctor and if non-qualified people are saying things like that it is worth of a complaint.

[merril in reply to PMRpro]

I take your point PMR pro, but not prepared to discuss the three occasions on which I was asked to call someone out.

[Suffererc in reply to merril]

Problem seeing different doctors. I always try to see the same one and have done so, so far. She most probably thinks 'not her again' lol

[winfong]

I have GCA and had classic constitutional symptoms before being diagnosed - headache, fever, shortness of breath. cough, and - most prominently - major weight loss, with loss of muscle mass in arms especially. Of course, none of that made me feel like exercising either, though I had been pretty active before. I'm about 30 years younger than you, by the way.

[merril in reply to winfong]

Thank you for replying, and can relate to the muscle mass loss in arms. Even a cadaver would look better than I😀. Seriously though, my legs beginning to show the same signs and I am back to using my tea trolley on wheels to help with my walking in the house. I am unable to walk outside unless I have my daughter's arm. I have always been active even at my age, and only gave up driving last year making me dependant on someone to drive me. Finding this forum has been a real blessing for me and I am indebted to all those who reply to me.

[Suffererc]

Hello Merril,. I too lost a lot of muscle mass when I first started this PMR journey 3 years ago. I have regained it on my legs but not my arms. I walk regularly with my dog. About 7 - 8000 steps a day. I also lost 20lbs in weight which has remained with me now. I was very fit and active at 67-68 but not so much now. I do not try to push myself to exercise more because it just causes flares so not worth it

[merril in reply to Suffererc]

I appreciate your reply, and will have to accept that perhaps my arms will never return to normal. Will just have to keep them covered!