LVV pain

[Devoid]

Hi recent diagnosis of LVV , crp this week in normal range,but still experiencing a lot of pain. If the inflammation is settled any ideas on what causes the pain??

[PMRpro]

What sort of pain? Your arteries are inflammed, inflammation causes pain. But the blood flow to the muscles is compromised and that is painful when you try to use them for repetitive actions as they run out of oxygen quickly and lactic acid builds up in them as the blood flow is poor and takes longer to cart the rubbish away.

[Devoid in reply to PMRpro]

Thanks for your reply, I was expecting to be more comfortable as the inflammation reduced , I have realised by other posts that the blood results are not always a true reflection of what you are experiencing!!! The inflammation was seen on ct pet scan in the aorta and main vessels off , the pain is very bad in neck ,chest , left arm , any amount of being upright seems to worsen it

[PMRpro in reply to Devoid]

That sounds more like myofascial pain syndrome and piriformis syndrome - which often accompany PMR and LVV. It sometimes improves over time with higher doses of pred but returns as the dose falls but oral steroids really aren't the best approach. Muscle relaxants and steroid injected into the trigger points help and so does the right sort of physiotherapy approach: therapeutic massage and manual mobilisation of the trigger points. NOT repetitive exercises! That just makes it worse until the spasmed muscles have been sorted out. I used to get a lot of relief with Bowen therapy but they do have to be good and honest practiioners, far too many around who claim to be trained but arent! One friend also used Bowen but also recently had a good result with acupuncture and cupping. A good sports injury therapist would also be a good option.

[guineapignot in reply to PMRpro]

Morning ... I experience at times severe pain in shoulders , hip and joints in hands plus extreme cramping . Meds are mycophenolate and Prednisoline with co codamol and tradol for joint pains. I recently started on a one to one basis with a physiotherapist who has a grest understanding of vascular disease and the gentle excercise and stretching brought huge benefits to me. The excercise is being increased gradually and is so effective... the muscle tone is improving... cramps reducing ... my breathing so much better and my general feeling / mobility so much better and most importantly little need for painkillers. That in itself has improved other “ symptoms” eg stomach related

Problems....

I have Cryoglobulemic Vasculitis .

[Devoid in reply to guineapignot]

Thanks for that, the pain I am getting isn’t joint pain, it feels in the vessels, I think I was being optimistic that it would settle as the blood markers came down, but this doesn’t seem to be!! The scan showed inflammation in most of the upper body, down to the stomach, so I think quite extensive, just dropped to 35 pred today and started methotrexate last week so early days I suppose?

[PMRpro in reply to guineapignot]

How lucky you have been to get a good physio experienced in vasculitis - would they were all so sensible!

Whereabout are you?

[guineapignot in reply to PMRpro]

Hi ... I am in Edinburgh. And yes I agree. This physio team are employed by the gp practice and are brilliant. My physio Andrew started me off very gently on the excercise and stretching which has made a HUGE difference and “ nudges me on each week with “ homework” an essential part of the programme . One month in my mobility is so much better and my muscles which were hugely affected by Methotrexate ( now on mycophenolate) are gradually strengthening which is brilliant . It’s such a viscous circle but excercise is so important ...I hope we see much more of this collaborative treatment being rolled out as so many health professionals have little understanding of these diseases and treatment of . Good luck in all you do.

Kind regards

Alan