Points of Confusion

[RNRN]

Points of confusion

1)PMR is an autoimmune disorder. The body attacks itself. Bursas and synovial fluid are involved. When you take prednisone you feel better with a day. If the is the body that is attacking itself for weeks how can you body recover so fast.

2)PMR present itself as muscle pain. Ok so the brain is wired to pain receptors and the muscles refuse to respond because of pain. Which means you should be able to overcome muscle weakness with will power. I was really never able to do this. But after I started moving and kept moving it did seem to get easier. Is this the brain becoming numb to the self inflicted pain and that is why this happens?

[polkadotcom]

Yes, PMR is currently accepted as being an autoimmune disorder and the pain is felt in the muscles, but it is caused by the inflammation in the body/muscles which we call Polymyalgia Rheumatica.

The steroids' job is to dampen down the inflammation and so give us some relief from the pain. The muscles don't refuse to move because of pain, but because the inflammation makes them stiff and unresponsive and the attempt at moving is translated into pain.

Will-power was never a feature in my PMR life; with all the will in the world I was unable to move due to the pain and stiffness. It does get easier for a short time after moving but PMR muscles are acutely resistant to repetitive movements and after a while the effort of trying to move is too great - for both me and my muscles - as it is now causing additional pain.

Does this help you, RNRN?

[trish29 in reply to polkadotcom]

Thank you polkadotcom.for answering RNRN's post and to everyone else who answered as i have been to hell and back in the last few months with muscle pain in my arms and shoulders. It hit me like a bolt out of the blue and has taken away my hobby of knitting and crocheting.. The exhaustion that came with it was awful.I am used to having pain in my legs and being unable to walk but i spend all day pushing myself to do things through my pain. Reading the replies to RNRN's post has given me an insight in how others are coping . Iv'e tried to get extra medical advice but every time i see a Doctor i see another Locum, i have an appointment tomorrow but i have seen her before but she is not PMR friendly. I have had to go up to16:05 steroid to keep the inflammation at bay but she wanted me below 15mg before i saw her again..even this amount of steroid doesnt seem to be enough as i had a nasty flare to my legs on Friday night. My only relief from my pain is my visits to my Bowen Therapist and the relaxing treatment is wonderful. I push myself all day but stop for rests in between, i have also taken on a nice lady to help me in the home as i just can't get back to how i was before this flare before Christmas which a Previous Doctor said was a Viral infection..Best wishes to All fellow sufferers and may you be pain free ..trish 29

[polkadotcom in reply to trish29]

Stop pushing, trish29, and take the rest which your body and poor muscles so desperately need.

Even though you are resting between jobs, I suspect that you are still doing too much and for now 'less is more' as the saying goes. Less housework/whatever and more of the resting.

Your muscles are under stress and need more TLC. If you absolutely must do a chore/job/whatever break it down into small bites and rest more in between. And warn whoever might be asking more of you, that your default answer is 'no'.

[trish29 in reply to polkadotcom]

Hi polkadotcom..thank you for replying to me and yes i aim to rest more that is why i have taken on an extra lady to help me with the jobs that i usually do as i already have a cleaner.Its Always being pointed out to me what i can't do Never what i Can do..i have to be stronger and say no more. Its very hard for my partner as when he was working he didn't notice my condition as much , he has now taken over most things and does All the cooking ..he is 76 and gets very tired ..Hopefully with extra help around the home and Better weather around the corner things will improve. I think people ie friends and Family feel that if they push you to do more then they are helping you by Motivating you but All the time the body is crying out for rest. Best wishes trish29

[PMRpro Ambassador in reply to trish29]

Just to say - I echo everything pdc said! If your body is crying out for rest - then that is what it needs and indulge it!

So I'm a slut - but I just DON'T! Dust is very patient - and you have a cleaner! If a recipe has more than 4 ingredients or will take longer than 20mins to prepare- I lose interest. We eat very simple food - and to be honest, if we lived in the UK it would be much simpler! You have ready-prepared all sorts of things available. The freezer and your microwave are your friends - when I cook peas or beans, for example, they come out of the freezer, and are cooked in the microwave in a mug or soup bowl. Minimum washing up. Other veg I tend to roast in the oven - all on one tray. If it is lined with foil - no washing up. I have a slow cooker - I don't brown the meat first, there is no real need. I used to cook as a hobby - now the aim is to find the easiest way to do anything! If something makes me feel ill/overtired, either it is eliminated or it is reassessed.

So your partner is 76 and gets very tired - I have no idea how old you are, but YOU have a chronic illness and YOU get very tired. Don't ignore YOUR side of the situation - and for goodness sake stop pushing yourself. Because that is probably causing more than half your problems: it is simply too much for you.

[trish29 in reply to PMRpro]

Hello PMRpro ..i am resting at the moment and i have re-read your reply a few times and taken it all on board that is why i have already got in the extra help and this Lady will help with the cooking side as well. I am 70 and yes i get Very tired too..Pete insists on doing the cooking and as my late husband and i were in the Restaurant Trade for a long time it was nice to get away from the cooking side of things..i have learnt to reassess things..i feel hopefully things will improve..are you coming to any of our meetings this year? It would be lovely to meet you again. All Best wishes trish29

[PMRpro Ambassador in reply to trish29]

Good girl!!!

I honestly don't know when we'll be over. I was in Farnborough last week for a family funeral but we didn't stay. We won't be over in August because "The Meeting" is in August this year - maybe earlier though.

[PMRpro Ambassador]

The improvement in pain and stiffness with movement is partly due to improved blood flow to the muscles - you can get a similar effect by vasodilation with warmth in the shower for example.

[Doralouise77]

Interesting questions, and I don't know the answers....but I've been told by two rheumys (professor and researcher) that the pain is actually in the joints (the joints have the inflammation in the bursa and synovial somethings ?) ....but what we feel in our muscles is "referred pain"...everything I've read supports this...I don't know how that makes the muscles so weak, maybe from not being used....hopefully there will be some answers....

Cheers

[polkadotcom in reply to Doralouise77]

Not quite sure where/what you have been reading and definitely not sure where your Rheumies are coming from (not this planet). Yes, bursitis often goes along with PMR as does tendonitis and synovitis. But they are add-ons and can happen to anyone with or without PMR.

[Admiral06]

RNRN

Before steroid treatments began, raising my arms up from my sides (as in making a snow angel) was impossible. Once my wife raised an arm with me, however, I could then do it by myself. It was like a paralysis was removed. I was also unable to get out of a chair, but once she pulled me up (this often took 3 times) I could also do this by myself. After getting hopelessly stuck on the toilet in the middle of the night, I rigged a device like a water ski tow rope so I could pull myself up without waking her up.

Just as you pointed out, will power was never enough to overcome the initial pain and paralysis, but it was always better once I got moving in the morning. Your question brought this all back and helped me feel better about the drug side effects.

[RNRN in reply to Admiral06]

Thanks I can relate to exactly what you are saying. But you have raised another point that is confusing. PMR is affecting your arms. But like you I did rely on my arms to get up. Maybe it is just spreading the load that we were doing. Or is it the chest muscles are okay so you can pull but your back muscles are weak?

Just FYI: My shoulders hurt. But in ways that are different from frozen shoulder. When laying on my back it hurt to bring my arms up off the bed. I was looking for a reduction in range of the arms. I was expecting not to be able to reach behind me or to be able to reach the middle of my back. That never happened. Also for anyone who has ever had shoulder surgery the question of symmetry can be affected. I have paid close attention to making sure my shoulders move. While I am thankful for shoulder surgery to clean out scar tissue in my left shoulder it is best to make sure it cant form, the recovery time and effort is not trivial, even if there was no risk to surgery.

[Admiral06 in reply to RNRN]

Hello RNRN,

Interestingly, I could curl my right hand (palm up) to my chest, but not the left.

My left shoulder was also my most painful area. Another bad memory was trying to turn over in bed or get up in the middle of the night. This took some strategic planning. I can smile now, but was not smiling then!

[RNRN in reply to Admiral06]

Thanks for your post. I can relate. People find it hard to believe when you tell them you struggle with the covers in the morning. If my wife did not help I would struggle. I also remember not being able to tie my shoes while by GP would just tell me to wait for my Rheumatologist appointment in 3 months.

[trish29]

Thank you Admiral06.. you are giving me hope that things do get better..I can take pain but this recent pain has been worse than my normal PMR pain which i didn't think was possible Best wishes trish29