Off the scale: I have been immobilised for the last... - PMRGCAuk

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Off the scale

bBarnabus profile image
33 Replies

I have been immobilised for the last five days with excruciating pain in my left buttock, outer thigh and down to my knee. I can rarely get comfortable and if I get up I can only move doubled up . I then get such awful pain that it takes half an hour to get any relief . I’m writhing around all day.Painkillers have little or no effect. I’ve tried flooding with ibuprofen800 msg and dosing on 400. The doctor gave me a jab of analgesic in the bum yesterday and prescribed enantyum 25mgs All have made little difference.

I had something like it about two months ago after I slipped on the stairs. I wrote about it on here. It did clear up after a week or so but it was never as bad as this. This last episode was predated by my slipping in the rain in crocs, I kind of did the splits with my bad leg protruding forward. The pain only really came on four days later after a two day journey in the van. I have been doing a lot of lifting and moving things before all this feeling really good while I was doing it. Not a choice. I had to move out of my premises in England before driving back to Spain. Question is what is it and how can I treat it. I am also currently on 20mgs of deflazacort which is about15 msg of pred equivalent. Is it pmr playing up? is it piriformis? Is it myofascial. Where I am in Spain nobody knows much about pmr But I have got a rheumatology appointment in Granada in two weeks which in this state seems like a long time. Any ideas?

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bBarnabus profile image
bBarnabus
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33 Replies
123-go profile image
123-go

Could be piriformis or sciatica.- hard to say but it sounds very painful. Stretches may help but you need the correct advice. A physiotherapist might be an option. The fact that the analgesic made very little difference really calls for professional help. Good luck and let us know how you get on.

PMRpro profile image
PMRproAmbassador

Sciatica possibly due to piriformis syndrome - the piriformis muscle is in spasm and pinching the sciatic nerve causing the referred pain down the leg. Unfortunately that is probably the best option and very common alongside PMR - but there are other causes of sciatica - if it is more spinal/disc related it will take time. I assume you are back in Spain? And that the doctor examined you properly to assess that?

Most UK doctors would just hand out the painkillers and tell you it will be fine in 6 weeks ... But it does take time and you have probably added to it with your activities - yes, I know there was no choice BUT ... And driving really will have added to it

I am stopped in my tracks when it happens to me - no choice really - and it take the ibuprofen and heat a few days to sort it out. Not just a few hours and the brufen alone isn't enough. Not convinced by the studies I just read that it is any more effective than ibuprofen for severe pain - for moderate pain maybe.

bBarnabus profile image
bBarnabus in reply to PMRpro

Thanks for your reply. What to do next; lay in bed and rest it or try to keep it moving. No the doctor did not examine me just treated the pain with painkillers. I don’t think it is related to the lower back as manipulating the vertebrae does not alter the pain levels.

PMRpro profile image
PMRproAmbassador in reply to bBarnabus

I would have said a physical exam - including raising the affected leg to 90 degrees to elicit pain (or not) - would be indispensable

bBarnabus profile image
bBarnabus in reply to PMRpro

Raising the leg straight to 90 degrees when I am laying down does not increase the pain at all

PMRpro profile image
PMRproAmbassador in reply to bBarnabus

That's something. So it comes down to rest, icing/heat and patience ...

bBarnabus profile image
bBarnabus in reply to PMRpro

Thanks again for your help you’re the first person to be able to differentiate. You are worth your weight in gold

SallyLeon profile image
SallyLeon

Hi bBarnabus; I had something similar recently and it was diagnosed as IT Band syndrome. I had a few months of physical therapy, including massage, which resolved it.

bBarnabus profile image
bBarnabus in reply to SallyLeon

Thanks I will investigate

piglette profile image
piglette

I had sciatica which sounds similar, it really is agony and takes your breath away. I found that painkillers just did not work. However physio was helpful. Also a friend I met in a cafe said there were exercises you could do which she then started to show me in the middle of the floor of the cafe! They looked as if she were tying herself in knots, I am not sure I could copy her! Perhaps you could find some exercises on the internet?

bBarnabus profile image
bBarnabus in reply to piglette

Yes thanks will do. It appears more likely to be piriformis syndrome that is causing the sciatic pain and there are exercises on the net to deal with that but at the moment I’m loath to get out of bed never mind tying myself in knots!!

piglette profile image
piglette in reply to bBarnabus

Go with how you feel. I always think it is better to go slowly and listen to your body too. There is no way I could have done what my friend did, sticking her legs behind her ears or whatever she was doing!! I suppose it entertained everyone else.

cycli profile image
cycli

Hi Barnabus try an exercise from my routines. It is totally passive one and helps open the hips and sciatic without any work. It may free the pressure and possible nerve issue. I'll put link. Scroll down I think no.3 is the one is the one. healthunlocked.com/pmrgcauk...

bBarnabus profile image
bBarnabus in reply to cycli

Thanks cycli

cycli profile image
cycli in reply to bBarnabus

let me know if it helps.I'm interested in how to develop the program

Viv54 profile image
Viv54

How awful , i suffer from this type pf pain on a regular basis, The only thing for me that helps is rest ,heatpad is great and Cocodamol to take the edge off ,plus patience , but sounds a really hectic time for you. Try to ignore the things you have to sort out,it will get sorted, in the meantime , rest and get better !

bBarnabus profile image
bBarnabus

Thanks for your support it really helps

Fifelassieo profile image
Fifelassieo

Hi, l have exactly the same only mine is on my right side, l have been sent to physio, not made much difference so far, mine also went down to my foot

Pixix profile image
Pixix

Yes! I have this now & limping badly, stairs are very difficult.mine goes right down to foot, & I get it when weather cools down. Diagnosed as sciatica last year. It really is very unpleasant, heat & warmth helps, but painkillers don’t seem to touch it. Good luck!

bBarnabus profile image
bBarnabus

Thanks I am getting some relief from Zapain but nothing else does

xdbx profile image
xdbx

You have my utmost sympathy. It does sound a lot like the sciatica I had last year which was caused by pressure from a vertebra in the lower spine irritating the sciatic nerve. It was the worst pain I have ever experienced and that is saying something. I never knew what triggered because it was nothing obvious or sudden. I tried all kinds of treatments. some more helpful than others, but what worked best was seeing a physiotherapist who gave me exercises that helped it to heal. In my case it took eight very long and immobilising months but that's quite rare and more often it can be seen off in 6 to 8 weeks.I would absolutely agree with others who recommend seeing a physical therapist asap to confirm what it actually is.

You could also google your symptoms and look for videos.

If it is sciatica there's an exercise called the Sciatic Slider which appealed to me immediately because it sounds like some kind of fancy cocktail! It's actually a good and very effective basic movement which I found I could manage to do even in pain and it helps to keep the sciatic nerve gliding normally as you move your joints. This is important because a nerve may not glide well if it is injured or inflamed.

You can find instructions online but here's the basic Sciatic Slider recipe:

While sitting down, straighten your knee and point your toe while you look up towards the ceiling. Return the foot starting position while lowering your chin to your chest. Perform this action slowly. You should not feel pain at any point.

Sending a very gentle hug and I hope you get some relief soon.

bBarnabus profile image
bBarnabus in reply to xdbx

Thanks will follow up you advice

cycli profile image
cycli

So Barnabus, did it help? how are you now?

bBarnabus profile image
bBarnabus in reply to cycli

Hi CycliI’ve been in another world, pretty incapacitated. I seem to have multiple issues with my back and piriformis l had an mri this week. Now coming to terms with having piriformis problems, ankolysing spondylitis, a protruding disc and arteriolisthesis which appears to be about bone misalignment in the vertibrae as well as having general lumbar degeneration . Ostopenoa diagnosed. Sorry I never got to try out your exercises but I will now I know more clearly what the problems are.

Best wishes Paul

PMRpro profile image
PMRproAmbassador in reply to bBarnabus

Which suggests you don't have "just" PMR - since ankylosing spondylitis can present looking just like PMR. But it responds very well to the anti-TNF biologics.

bBarnabus profile image
bBarnabus in reply to PMRpro

Does pred have any effect on ankolising spondylitis ? I’m just trying to work out whether I have been suffering from pmr all along or not. Nobody has really checked. But the pred worked straight away when I was first “diagnosed” could it have just been AS all along at first hurting my upper arms and thighs/hips. Then making me exhausted? Any answers or suggestions

PMRpro profile image
PMRproAmbassador in reply to bBarnabus

It will reduce the inflammation and so reduce the pain - the friend I had with AS diagnosed as PMR got a lot of relief but never as good as should be looked for with PMR. She developed tongue and head symptoms because of reduced blood flow due to the AS that even Dasgupta thought were GCA although another rheumy dismissed them as being anything significant - he didn't offer an alternative either. It was Prof Mackie who registered a comment that the back pain started soon after midnight and eased with movement in the morning - which is more typical of AS so she ordered MRIs that showed the early typical changes of AS. Often at the start of pred the relief from longstanding pain is quite dramatic so you think it is actually better than it really is - and that is also why later increases in response to a flare don't seem to work as well.

Anklylosing spondylitis is one of a set of spondyloarthropathies - but it is being realised that there is a lot of overlap

ncbi.nlm.nih.gov/pmc/articl...

They do cause peripheral symptoms as described here but it is a bit of a heavy read. So yes - I think it is very possible that you had a polymyalgic onset to your AS - and as they point out, when AS develops in older patients it is often with an atypical manifestation.

cycli profile image
cycli in reply to bBarnabus

sorry to hear this Paul but hoping the various diagnosis help you address your problems. Coping ids the issue we all face but you seem to have more than your share. Good luck and my best wishes for a speedy improvement

bBarnabus profile image
bBarnabus

Can you put pmr into remission? I thought it just had its own timescale and pred just dealt with the symptoms

PMRpro profile image
PMRproAmbassador in reply to bBarnabus

There is no known means of inducing remission of most a/i disorders

bBarnabus profile image
bBarnabus

What is TNF?

HeronNS profile image
HeronNS in reply to bBarnabus

I didn't know either. So I Googled your exact question. Interesting, its a cytokine, involved with immune system and inflammation. TNF stands for tumor necrosis factor.

bBarnabus profile image
bBarnabus

Thank you that cleared up a lot of things

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