Pain only when moving : I have posted fairly... - PMRGCAuk

PMRGCAuk

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Pain only when moving

Carathedog profile image
27 Replies

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

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Carathedog profile image
Carathedog
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27 Replies
jinasc profile image
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 profile image
Carathedog in reply tojinasc

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

PMRpro profile image
PMRproAmbassador

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 profile image
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 profile image
Carathedog in reply topiglette

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

piglette profile image
piglette in reply toCarathedog

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

Carathedog profile image
Carathedog in reply topiglette

More one sided, right side

piglette profile image
piglette in reply toCarathedog

If just one sided more likely not to be PMR.

PMRpro profile image
PMRproAmbassador in reply toCarathedog

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

Carathedog profile image
Carathedog in reply toPMRpro

Sorry yes Typo

PMRpro profile image
PMRproAmbassador in reply toCarathedog

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

Greynomad profile image
Greynomad in reply toCarathedog

Try having a few sessions of remedial massage .

PMRpro profile image
PMRproAmbassador in reply toGreynomad

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 profile image
Carathedog in reply toGreynomad

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

Viv54 profile image
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 profile image
PMRproAmbassador in reply toViv54

Try the exercises here:

myhealth.alberta.ca/health/...

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

Carathedog profile image
Carathedog in reply toPMRpro

Thank you , will do

Viv54 profile image
Viv54 in reply toPMRpro

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 profile image
PMRproAmbassador in reply toViv54

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 profile image
Viv54 in reply toPMRpro

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 profile image
PMRproAmbassador in reply toViv54

I'd have been in tears!!!

Carathedog profile image
Carathedog in reply toViv54

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 profile image
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 profile image
SheffieldJane

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

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

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 profile image
SheffieldJane in reply toPMRpro

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 profile image
PMRproAmbassador in reply toSheffieldJane

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

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