Tired weak hips when walking - is it still Pmr

[Blossom20]

Hi, I'm feeling despondent as it seems that I can walk less and less and I don't know what's wrong.I've been on 1mg, trying to get off for over a year. I have no pain except when I do sustained walking. It kicks in after about 3 minutes. Tired, aching hips and lower back and I have to stop.

I've got periferal artery disease in my femoral arteries which causes claudication in my calves, could it be caused by this?

I went to a private physio and she said I need to strengthen my muscles. I am as active as I can be - I ride a bike (easier than walking?), have an allotment, do yoga...

This started in my first year of pmr when I was on about 8mg I think. I remember it coming on when I was walking a long way to change tubes.

So, can any of you clever people diagnose what you think it is? I'm worried and upset about it as its getting worse...

[SnazzyD]

It could be the claudication and it might be worth having a check on at if you haven’t done so recently .

Saying that, by the time I got to low doses (no PMR just GCA) my hips and lower back were weak as can be. Both a physio and a podiatrist diagnosed the same issues. My walking etc was doing nothing because it didn’t strengthen or stabilise the right areas or I had adopted a way of moving that meant the muscles that were supposed to be strong and in the lead, were being let off. Consequently other muscles that had been drafted in were being over used in the wrong way. I had very specific exercises to sort it out.

[Blossom20 in reply to SnazzyD]

Thanks Snazzy for quick reply. How would they test to see if its the PAD or something else? I had a second U/s scan about 6 months ago which only mentioned femoral arteries. Yes, I got some exercises from the physio - stepping up onto a huge box is one! (I use a small table at home) Plus squats...

I can do all of this ok, it's just sustained exercise that's the problem -ie.walking.

Hey ho! Could be much worse!

[DorsetLady PMRGCAuk volunteer]

As SnazzyD says, think you probably require specific exercises...although most sites seems to recommend walking - even though its painful [to start with] - but to keep doing it.

webmd.com/heart-disease/exe...

cardio.com/blog/best-exerci...

Any chance of referring yourself to NHS physio - guess main problem is waiting times...

[Blossom20 in reply to DorsetLady]

Thanks. Yes, I've read all about walking for pad. I was very enthusiastic about it....but it doesn't get any easier, but harder. I asked my consultant about having supervised/group walks but he didnt know anything about it!Anyway, my hip and lower back pains are a different thing I think. The muscles feel tired and sore, not crampy like the calves. I wonder if the pred and or the pmr have damaged them..

Maybe I should try to get an NHS physio...the private one was too expensive for me, although much better than the poor, rushed Nhs ones. The NHS ones may be able to order tests/scans??

Thanks for listening to my moans!

[DorsetLady PMRGCAuk volunteer in reply to Blossom20]

Well Pred and PMR will have weakened muscles for sure and they do take time to recover as we all know..,

Physios - difficult to know what’s best… in the nhs system probably means you may get tests.

I did see same one both privately and within NHS system -over a number of years and for different reasons -and he gave same attention to detail in both cases -but did complain about NHS over lockdown procedures in 2020. Sorry went off subject there..

.. never worry about moaning -you’re not - you’re expressing an opinion and seeking advice 😊

[PMRpro Ambassador]

I have had severe low back and hip pain for the last couple of years - and it has been almost entirely due to Greater Trochanteric Pain Syndrome which includes a few individual things but as a syndrome. Sitting or lying I had next to no pain - the process of standing up was excruciatingly painful and even once the pain was improving, walking for 10 minutes made it worse. I can't carry anything. It was so bad last autumn I even bought a rollator - but since the rheumy started on managing the problem I haven't needed it.

I had quite severe sacroiliac joint inflammation which seemed to make the rest worse and I finally got my rheumy to give me a steroid injection to sort that out - the Pain Clinic wouldn't do it although they would do injections to improve muscle spasm in the muscles alongside the spine. The rehab rheumy is in the process of doing a course of extracorporeal shockwave therapy for inflammation of the hip bursa, He also likes you to do piriformis stretches alongside the therapy as he says it achieves a far better result. All together it is beginning to have a really good effect. It is frustrating though - some mornings I can get out of bed with no pain at all, the next it is back but sitting with a hot water bottle across the low back helps and by lunchtime I can go far a walk - and if I can walk for half an hour, the pain improves far more.

Something that did help me a lot was lignocaine/lidocaine pain patches to put over the painful area - here the area of use is very restricted to get them prescribed and OTC they cost a small fortune but then, so does paracetamol and it isn't covered by prescription.

southtees.nhs.uk/resources/...

I don't know how easy it is to get the 5% prescribed ones in the UK - you could ask the GP. A few hospital pain clinics use them so maybe they must be initiated by a hospital clinic. However, there are OTC 4% patches on the market such as these

amazon.co.uk/Different-Size...

You use them for 12 hours at a time - don't use heat at the same time though as it speeds up the release of the lidocaine and can cause an overdose.

[Blossom20 in reply to PMRpro]

Thanks Pro, sorry to hear about your back and hip pain- it sounds horrible, and much worse than what I've got. Mine isnt pain as such, just tired aching .Useful to k now about the pain patches - I'll pass that info on, thanks.I hope you continue to improve! All the best

[Broseley]

I'm getting trouble with my left shoulder atm. But I've noticed it's worse if I sleep on that side all night. Maybe sleeping position plays a part in all our aches and pains?

[PMRpro Ambassador in reply to Broseley]

I think it does - even the pillow you are using can make a major difference. Trouble is, I find using pillows to support me as I need doesn't work, the critical pillow ends up on the floor not where I need it,

[Broseley in reply to PMRpro]

You must be a very restless sleeper! My problem is that I don't move at all, unless my discomfort wakes me.

[PMRpro Ambassador in reply to Broseley]

I didn't think I did - possibly just aware something is different and restless until things are back to normal.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Agree, never realised pillows were so agile…or disobedient…😳.