Can anyone tell me what is actually happening in the muscles / nervous system to create pain in PMR? I feel I could handle it a bit better if I knew what was going on.
I understand the physiology behind post-exercise pain and stiffness and I'm familiar with the background to chronic pain but PMR mystifies me.
I've searched for info on this but have found nothing that informs.
Around joints PET-CT shows inflammation in tendons. Myofascial pain syndrome also seems to play a role in PMR - the very generalised pain felt when prodding large muscles is probably due to inflammation of the muscle fascia - the transparent skin you will be familiar with from joints of meat and poultry,
A PMR expert in Australia published this in 2019 which corresponds to that:
Not that easy a read but about all anyone has published thus far. The imaging available now is beginning to make it possible to make such suggestions.
Inhibiting IL-6 with tocilizumab/Actemra seems to confirm that it is involved in the inflammation - but exactly how it works in muscles other than what Claire suggests remains a mystery.
Thank you, that's helpful. I have a science background and am happy to tackle journal articles, I'll give it a go.
I was first diagnosed with GCA but when I tapered off prednisone my rheumatologist commented on my swollen hands and when he scanned my wrist showed me the inflammation. Likewise he did the same for below hip
What did he decide it was due to? The PMR or something else?
PMR for sure and immediately gave me a steroid injection and upped the steroid dose which worked like magic. It was interesting that there was clear evidence of fluid and inflammation around those different joints. I also began this journey five years ago with really painful achilles tendons which ruptured on their own. The diagnosis of GCA followed that closely (because of many other symptoms) but I think now I read what you have said PMR was quietly boiling away in the background.
I really wish tocilizumab was more readily available for us with recalcitrant PMR. My Rheumatologist just says it’s not available for my diagnosis.
Not in the UK no. I think it is wrong too - I've already been on pred 13 years, had I been diagnosed earlier it would have been even longer. Luckily I have no obvious severe adverse effects - no diabetes, no osteoporosis despite no bisphosphonates. But it has been a LOT of pred ...
I think you want a visceral hands on assessment from a suffer. I think it depends first on the severity of your condition when diagnosed. Secondly whether you have just PMR or GCA as well. Thirdly, what dose you are on and how well you are managing to taper. So you see already there are a lot of variables to consider and calculate for. I have my own theories and I'm sticking to them until proved otherwise. PMR witholds oxygen from reaching the muscles and lack thereof contracts the muscle with consequential build of lactic acid which poor blood supply cannot clear. That's the pain and in severe cases continues for hours as you are effectively in permanent cramp. Stretching won't work and massage though painful is the only answer apart from pred. I think there is a vast gap in how pred use on muscles is understood and needs a collaborative team of rheumatologist, neuromuscular specialist, sports physio and nutritionist. The muscle wastage is different in individuals but happens to all. How bindividuals accrue fat is also different but where it settles is generally the same. The loss of strength affects us all differently accordingly. The vascular effects of pred. reduce the heart valve functions in some and that results in fluid build up as the blood supply and function affects the lymph system from clearing fluid. This builds in feet then ankles, then lower legs and thighs until it moves to below the diaphragm and puts pressure on the gut, stomach and lungs. Unless this is cleared it stays and makes bending, and breathing difficult. If you also have inflammation of the cartilage and muscles between the ribs it makes taking a full breath painful. You cannot exercise to improve muscle tone or strength in this state. Prednisolone breaks down the fast twitch muscle first which is why you stumble when trying to correct your footing as the leg doesn't respond as fast as your braintells it to. Thesecond action is pred breaks down slow twitch endurance muscle hence loss of strength. I've lost about 60% muscle in a year. The third effect of pred is a mechanism which seems to prevent the nutrients needed to build muscle from your diet from getting into the muscle to fuel it. I am trying to structure a trial hopefully with me as a guinea pig to determine these effects and exercise whilst on pred to measure energy store against depletion and determine how much effort to expend without risking a flare from overexertion. This will need a collaborative approach from all the above specialists and an idiot like me. Without such data we are operating blind and either over subscribing or under dosing people. Neither is good. Without such information there is no guidance for recovery from the effects of pred.
work in progress D2C but will do.
that's statistics. By definition nothing is ever 100%. I'm more interested in balance of probabilities. If I am headed in the right direction with proactive support I will feel confident of a better outcome than the current "professionals" hit and miss approach or even laissez faire attitude.
I hope for your sake that is true. You've been on a helter skelter of a trip. I am not happy after a year of what pred has done and I want to see if there is a structured way of dealing with the damage and improving condition whilst still taking it. It's just the way my mind works. I trust me and what I can understand from those who know about the condition from personal experience and their qualifications. If they can't explain it so I can understand it they don't know enough. There is a route through this which hasn't been mapped yet and it needs more work.
Gosh, cycli - and Dad2Cue - well done! Great thinking and I wish you all the luck in your research 😊x
Like I said on another thread, one can accept what one has and is happening whilst trying to find a way to work better with the condition. The damage we suffer is not being able to tailor better the treatments we all need. Managing the doses and different meds. is key to a better outcome. Unfortunately we need them or we'd be 6ft under or crippled.
Great question bakis 😊 I’m afraid I have only the vaguest notion of what’s going on ‘under the bonnet’ . Knowing more would definitely help keep me motivated to keep this old banger on the road! xx
Variables!!! If all sufferers put in all of their symptoms, their genetic make up, their diet and lifestyle type, their stress levels, their health record and maybe their star sign into a really good computer program we'd find out what was going in 🤣🤣🤣. I've only just read that the Covid vaccine might trigger PMR. I had the AZ jabs in Jan and April 2021. My PMR started in June 2021. I was under a lot of stress around then so thought that was the trigger. However maybe it was a combination along with being in the optimum age (73) and female. Or maybe the hot weather at the time or .........
I'm sure you will see better days Smithie49. Just be patient. Like I say below we'll never know for certain why we have it. All we can do is try and plot the best way through it.
ANY vaccine could trigger PMR - ANYTHING that has an effect on the immune system can contribute to the immune system eventually becoming deranged and going haywire and unable to recognise body as self so turning on body tissues. Most people here developed PMR long before Covid and the Covid vaccines appeared on the scene.
Keep struggling Nextoneplease. Not knowing is stressful but only if we keep niggling at the question of why we got the condition. If researchers finally find the key trigger and some definitive way of identifying what causes this then that's good. I have some idea of what may have triggered mine, but, looking back at all the symptoms I exhibited over a period of at least 10 years and all the techniques I employed to lessen them and continue doing what I wanted it's uncertain I will ever unpick it to determine the start point. For me the here and now of this condition and my medications is central. Dealing with the outcomes of what is current is the issue. How to get the most out of what I am able to do without setting me back is the only way forward.
thanks for that D2C logged.
Well. What I have read indicates that it is a form of vasculitis, in which the blood supply is lessened to various areas. It is also inflammatory and destructive to vessels, which why we out up with Prednisilone.
What is happening now?
What happens when you end tocilizumab 
Don't know What's happening to me!!
What happens with rheumy after you stop pred?
What has happened to the News Feed !!
