Need medical understandung of pmr
Posted , 12 users are following.
Hi all,
Hope you are well,
I am having a "hit by a truck" day, albeit it a small truck.
Severe pain in legs and arms feel like cement is attached to them.
I have done "good pacing" this week or so I thought.
I have read and researched this condtion and the dire effects of it, but I seem to have very little understanding of what does this illness do to my muscles??
What is attacking, which part, and why do I feel like this for no apparent reason.
I thought I was quite knowledgeable, but I don't understand this.
Please advise, when you can.
Julia
0 likes, 22 replies
julia85224
Posted
Oh dear
Anhaga julia85224
Posted
julia85224 Anhaga
Posted
Hi,
Good to hear from you,
I keep blaming the phone, but alas it's my lack of checking.
I await info as well.
Take care
Anhaga julia85224
Posted
Unlike others here I don't blame PMR for muscle weakening and wasting. During my undiagnosed winter (had probably been ill for 8 and more months) I had great difficulty getting out of bed, washing or brushing my hair, etc etc, but I was perfectly capable of shovelling considerable amounts of snow, and it was the winter of hell we still talk about! Last winter, now on prednisone for more than six months, I no longer had strength to do nearly as much heavy lifting. I thought my strength was gradually improving as I lowered my dose, but apparently not, after all. And I have remained active throughout.
ptolemy julia85224
Posted
Anhaga ptolemy
Posted
I think it's the pred which makes muscles weaker.
ptolemy Anhaga
Posted
Anhaga ptolemy
Posted
I've stayed as active as I possibly can, without overdoing it (I hope). Not inactivity, that's for sure.
ptolemy Anhaga
Posted
I find if I am inactive any day I don't feel half as good as if I go swimming or something. I must be careful not to spend too much time watching the Olympics. I have just seen the most amazing archery with USA and Korea. Korea were unbelievable and just kept getting bullseyes. They won the gold medal.
julian. julia85224
Posted
when you find out can you let us know ....
Best I can make out is inflammation of small blood vessels in muscles which inhibits removal of inflammatory cytokines which in turn leads to more inflammation. The pred suppresses the inflammation. There's also something about the time of local cytokine release in the very early hours of the morning, which is why we are most painful when we wake.
Not a very good explanantion, nor the full story. But partly (for me) explains why aerobic exercise, which increases blood flow, has a very different effect on me than carrying heavy groceries from car to house (strength exercises aggravate my muscles). Of course its hard when we have no motivation, full of fatigue, and it hurts, so there is possibly a downhill spiral. And if we overdo things we simply make it all worse.
Somewhere in there is a difference between those repetitive movements, like polishing things, and walking.
The hit by a cement truck feeling is an added bonus. I never did get the driver's name. I got better at recognising the signs and stopped earlier. But spent lots of time being incredibly restless while feeling totally incapable of doing anything.
Not much help really. I used to force myself to go for a walk, the thought of how to get home was just a bit scary. I felt better for having done something.
Not sure where you are up to with the pred. My pain was always reasonably under control, I only ever had to increase for a couple of days when odd things happened and I was very reluctant.
One way of describing the early part of the journey is I had to learn to listen intently to what my body was saying - not easy as I wasn't used to listening and it doesn't talk very well. Of course I heard things that were really nothing, became over sensitive. Though perhaps just as well as what I thought was an insect bite was the beginnings of shingles which doc caught very early (I have a photo of the single blister). On the other hand the blue tinge to my legs was from new shorts, which produced only a mild panic before I realised. It took me time to recognise what I needed to do something about and what was "normal".
If you have a sense of humour I'd suggest about now is when you need it. Some days I couldn't do much else than laugh, and it didn't make it go away. I hope the truck was at least a nice colour. For me the pred highs helped make the colours brighter.
But I did get used to it all. I'm very much not over it after only a bit more than 2 years. But I'm sure as eggs heaps more capable than those first few months of treatment. The last few days have been an hour or so of whipper snippering. I used to do it all in one day. Grass grew while we were away. But I needed help pulling out some really thick stuff as I've lost a lot of strength in my arms and it hurts - did I mention that asking for help was something I've had to learn, and I hate feeling helpless with a passion.
ptolemy julian.
Posted
julia85224 julian.
Posted
Hi,
Thank you for you're reply, and information, I am sure like most people with this illness wish inflammation would go back where it came from.. . same with the truck.
What it is, so frustrating when you think you have managed to do a bit, you have days doing nothing.
My lawns need cutting, but will have to wait, looking at the lawnmower makes me feel tired today, ha.
Sense of humour we must never lose.
Take care
julian. julia85224
Posted
it does put a different complexion on watching the grass grow. I could, and did, watch it for days before summoning the energy to stare at the mower and wonder if I could start the confounded thing. Desperately trying to persuade myself that the little engine that could in the stories I read our children is at least a little bit real. But there's no steam left. Something perversely enjoyable has become a chore.
It often seems that the same advice gets repeated on fora with just slightly different variations. But it also seems to vary on a spectrum from "don't give in" to "slow down and pace yourself". Its no real satisfaction, when all we want is for a magic wand to wish it all away but I suspect "slow down" may have a better outcome most times. Mentally and physically. It may not feel like it but I have an impression you are already ahead in the game. I can't imagine anyone having to tell you to not give in.
Even knowing its a stage in the journey doesn't help much. That ever so gradually, as the symptoms retreat imperceptably, and the pred can be reduced, the energy levels recover.
And those cheap eBay magic wands with the little lights in the end don't work.
julian. ptolemy
Posted
julia85224 julian.
Posted
Bless you,
The words you have said are so true,
I am sure at some point most of us have felt either in denial or belligerent towards this illness.
Life changes colour a little when you can't do what you did or want to do.
I have to hold on to the thought that for a day I feel "rubbish" ( like today) is a day nearer getting better.
I will do the lawns tomorrow, it's going to be sunny.
Take care