Pain only when moving

[Carathedog]

I have posted fairly recently, saying two GPs and Rheumatologist are convinced I don’t have PMR

My pains are lower back, buttocks, hips and legs, but I’m only in pain when I’m mobile, nothing when I’m resting

Any suggestions

[jinasc]

Put these in your search engine aTake a look at 'Myofascial Pain Syndrome' and 'Piris Formis Syndrome......................

PMRpro and others who know more will be along to explain.

[Carathedog in reply to jinasc]

Piris Formis Syndrome sounds very similar to my symptoms, have a doctors appointment on Monday Thanks

[PMRpro Ambassador]

jinasc got there first! I have "below the waist pain" - all due to myofascial pain syndrome and it rarely hurts when sitting unless I try to sit without my back well supported and then it will spread up as well.

I haven't seen this link before - and it is very comprehensive! So thank you for sending me to look!

asahq.org/madeforthismoment...

though I don't agree with their suggestion it is only one area - because it can also be part of the pathology of PMR and then it can be more generalised as more muscle groups are affected and sometimes it is difficult to separate one from another.

jrheum.org/content/46/12/1552

I think it is this that gets doctors confused when they try to tell people they have fibromyalgia not PMR - the inflamed muscle fascia (the transparent skin seen around joints of meat and poultry) makes muscles tender to touch.

I find that it improves with higher doses of oral pred and the needling mentioned in the first article is great - my rheumy does it and the Pain Clinic here used to do it pre-Covid. Not cheap as I have to pay for it - but it's worth it for the effect!

[piglette]

I think I might agree with your doctors. I was in excruciating pain when I was lying in bed. I could not lift my arms up at any time at all.

[Carathedog in reply to piglette]

I’m beginning to think that myself, read the Paris Formis Syndrome, sounds pretty much like my symptoms Thank you

[piglette in reply to Carathedog]

Is it tending to be one sided or the same across both sides ?

[Carathedog in reply to piglette]

More one sided, right side

[piglette in reply to Carathedog]

If just one sided more likely not to be PMR.

[PMRpro Ambassador in reply to Carathedog]

if you need to look it up - not paris formis, PIRIFORMIS

[Carathedog in reply to PMRpro]

Sorry yes Typo

[PMRpro Ambassador in reply to Carathedog]

I assumed it was autocorrect! But if anyone else wants to look it up!

[Greynomad in reply to Carathedog]

Try having a few sessions of remedial massage .

[PMRpro Ambassador in reply to Greynomad]

Though do bear in mind that may make things worse in the short term - it releases the inflammatory substances into the system so you may feel as if you have a flare of PMR.

[Carathedog in reply to Greynomad]

Worth a try, have had a look at some local places

[Viv54]

THis is exactly me atm, i am doing Dorset ladys tapering , im on week 5 when yesterday both my buttocks front and back of legs , shins etc all started pulling !! Felt like my tendons were all being twisted. Never had such chronic pain . I am ok if i just sit ,but to walk is agony ! I am going to go through it as no matter how many DR, Rhumy, Endos i have seen it has not made the slightest difference ! I will plod on with my tapering and my own way of pain relief . But thank you so much for this as now i can see im not alone !🌷

[PMRpro Ambassador in reply to Viv54]

Try the exercises here:

myhealth.alberta.ca/health/...

They really DO work on the tight muscle that causes the symptoms

[Carathedog in reply to PMRpro]

Thank you , will do

[Viv54 in reply to PMRpro]

Thank you will give it a go, but it will have to be on my bed , as laying on the floor is no longer an option for me .I would never be able to get up again 🙄

[PMRpro Ambassador in reply to Viv54]

Oh tell me about it!!!!! I do them on the bed too. Really not sure what would happen if I tried doing ANYTHING on the floor! Can't put any weight on either knee to stand up - anyone would think I had had new knees!

[Viv54 in reply to PMRpro]

Exactly, i got down on my knees last year to get something I dropped under the bed , I then found I couldn't get back up , had to haul myself up holding on tight to my duvet cover praying it would stay on the bed !! It did and I survived, I can laugh now, but it taught me never to do it again . !😂

[PMRpro Ambassador in reply to Viv54]

I'd have been in tears!!!

[Carathedog in reply to Viv54]

Feeling exactly the same, my rheumatologist thoroughly checked me all over for 1.5 hours, said it was more like tendonitis or bursitis, coming off steroids slowly, and waiting for results of bloods and X-rays 🤞🤞

[Broseley]

It's interesting to read this because I had similar issues, but no buttock pain or pain on pressure except in my knees when lying down (that I noticed) and I was only in pain when I tried to move. Back, hips, knees but not shoulders. Incredibly stiff most of the day. As long as I sat or lay still I was fine, except I did get sciatica type pain down from my right knee to my foot and numbness in my foot. I am a natural fidgeter so it wasn't easy to keep still. I was diagnosed with PMR and GCA after I started getting jaw claudication, neck pain and a headache that wouldn't go away. Pred has so far sorted it all out, (now down to 9mg) I still get slight hip pain but nothing in my knees, which were the worst affected. Could rheumy be wrong then about my diagnosis? I have looked at the links but PF and MFS don't seem to fit.

[SheffieldJane]

I feel fine in bed these days, this thread has made me re-think the pain I have on walking.

[PMRpro Ambassador in reply to SheffieldJane]

I have had a lot of pain walking in the last 4 or 5 months. But it isn't "just" the PMR, it is the add-ons and they all respond better to other approaches. It has been a bit of a struggle because of Covid - the difficulty accessing the management that works underlies it all and was a primary cause, Now things are improving - but we do need to be proactive too if we can afford it. I was stupid enough to try a statin again - just to keep a different doctor satisfied - and I discovered a few days ago that it probably not only made the PMR flare (a bit) but could well have triggered the achilles problem again.

[SheffieldJane in reply to PMRpro]

Thanks for all of this. I am feeling very stuck and need to push through the pain and malaise. I think my pain is secondary to GCA. Use it or lose it.

[PMRpro Ambassador in reply to SheffieldJane]

You should try to address the pain problem - and yes, I know how difficult that can be