I was diagnosed with PMR April 2019, I've reduced to 9mg, but now back up to 12mg after 2 flares. I now get agonising pain occasionally in my R leg, from buttock to foot. The pain subsides but leaves tingles under my foot. It happens several times a day.
Now, this may not be PMR related! Has anyone had similar, and question 2, has anyone tried pain relief with a TENS machine?
Hi, I haven't got pain in my leg but did develop pain in my groin on one side which was due to wear and tear. A steroid injection had resolved this for for the last few months but pain rising again. I have tried a tens machine before but for me it didnt have much effect. My husband broke his back and also tried a tens but he did get a little relief. I think it's a personal thing and why a person has the pain in the first place. Have you seen your doctor about it? YBB
I haven't been keen on seeing a Dr, but I think I should. I'm reading up about fibromyalgia and MS and scaring myself.
Rather than imagining the worst see your gp. There are lots of reasons for the pain and most will be easily resolved or be innocent even if painful. Just having a trapped nerve can cause an unbelievable amount of pain and be quite debilitating but definitely not life threatening. I often have pain in my foot and some numbness which is from sciatica. I am due a scan to check which nerves are affected but covid got in the way. Whilst my foot hurts and the tingling is annoying I know what it is and can save myself imagining other things. Get a call in to your doctor and see what he says. Let us know how you get on. xx YBB
I had similar symptoms for about 6 weeks. It was the inflammation of my sciatic nerve. I was given some stretching out exercises and painkillers.I had overdone being my eldest daughter’s nursery maid ( first baby) and could hardly walk. The pain was like my leg was strung with piano wires. Steroid use gives us muscle weakness that can make us prone to these injuries.
I used a tens machine for labour pains - not massively impressed. Stretches are better ( gentle).
I tried it for labour as well and I wasnt impressed then either. It seems to work for some people, I just wasnt one of them!! YBB
Sounds like it could be an upset nerve type pain eg sciatica. You need a doc’s opinion I think. In the meantime record details like when it happens, what aggravates it, what activity or inactivity you’ve done in the last 24h and if anything eases it.
Like everyone else I think it sounds as if there could be some irritation of the sciatic nerve. It is not uncommon alongside PMR, especially if you also have myofascial pain syndrome that makes low back muscles tight.
spine-health.com/glossary/m...
Look at the other links from that page too.
Thank you everyone. I will call my GP today. This site is so reassuring. I stayed up until 1am reading posts. Learning to live with PMR is daunting but this feels like my PMR family!
I've used a tens machine over the years. My physio recommended it with the warning that only about 60 percent of people find any relief from it. In those days (1980s) you were able to try one from the manufacturer and send it back if it didn't work for you. At that time they were quite expensive to buy but now they seem to be cheaper and more available. I still use mine occasionally for neck pain but it doesn't work on my back unfortunately or for the PMR pain.
Guess after you have seen your GP and if you can afford it, it might be worth a try. Get one with plenty of different levels and with pads that you can place where you want to interrupt the pain. I found that I needed to place the pads just above the painful areas not on it to get benefit. Hope you feel better soon x
And a warning: you must not use a TENS device if you have a pacemaker!
I have a lot of leg pain as well. I think some people do. My new rheumatologist said there were two reasons for muscle loss, steroid intake and lack of exercise. Lack of exercise can be remediate but not the loss caused by the steroids. I have been trying to exercise by walking etc but it is very painful next day, even with a short walk. I’m determined though. I’ll keep at it.
They also diagnosed sciatica. After an injection that seems to have gone, but not the other leg pain. Interpreting the pain is the difficult thing.
Steroid -related wasting can be avoided and even sorted by the right exercises. I had considerable leg muscle loss when I was on methyl prednisolone, never been a problem with prednisolone or prednisone. But as soon as I stopped the methyl pred and started prednisone and walked - back came my leg muscles. I was on crutches at the time so it wasn't heroic walking by any ,eans!
With your walking now: how far can you walk without having pain next day? If you aren't sure, the way to start is with not more than 10mins, 5 mins out, 5 mins back. No more, be strict, and rest afterwards. Next day - NO EXERCISE but assess whether you have any DOMS (delayed onset muscle soreness). If no DOMS, next day add ONE minute to the outward walk, so 12 mins total. Next day - rest and assess. Rinse and repeat ... It will build up quicker than you think.
The day you can feel it the next day you have got to your maximum for now, Go back to the previous day's no of minutes and do that for a couple of weeks to improve your muscles. Then add a minute to the outward walk again and go through the same process I described until you get to a length of walk that gives no pain next day and you are happy with.
If 10mins walk is enough to cause pain you will have to start with even less but build up the same.
My husband is just starting rehab and this is what the physio told him to start with and emphasised the rest day - I was amused, it is what I have said on the forums for years. Now I have official approval!!!
And your husband will now believe you.
He's just complained the balance exercises are making his legs ache - not sure he appreciates the poor balance is due to lack of leg and bum muscles!!!!! And apparently the timer runs too slowly ... 
You at least gave me my morning laugh!😀
Of course his legs ache but you probably told him they would anyway until he slowly progresses.
Put the timer on 5kms per hour - that'll be quick enough for him.😀 Be nearby though to pick up the pieces!!!
It's his kitchen timer - he is supposed to hold the position for a couple of minutes (one foot in front of the other as if walking along a line heel to toe). Managed 45 secs on one, 35 secs on the other this morning. Way to go ... At least we have one radiator he can use to rest his hands on for balance - otherwise I'd have to stand behind him The bonus is, if he needs to sit down the loo is right behind him!
A couple of minutes? No wonder the poor man is in pain! Wouldn't the back of a chair be safer? That's what I use.
No - the radiator is firmly fixed to the wall, if he toppled the chair would too! It is what he was told to aim for - and it shows how poor his muscles are. Not immediately - got to build up slowly ...
Thank you very much, PMR Pro. I think I have been doing that intuitively. I am Up to about 8 minutes. But have never been sure about the rest day despite asking. The physio I saw privately did not know much about steroid muscle loss.
The rest day is actually a fairly standard thing for training for non-professionals as far as I can tell.
"Resting is just as important as working out because it's an equal part of the total process required to build strength, endurance, and muscle. ... In fact, resistance training breaks down muscles causing microscopic tears,” Wynter said. Rest days allow your muscles, nerves, bones, and connective tissue time to rebuild.”"
and
theactivetimes.com/why-rest...
You must then bear in mind that ANY exercise for us soon after diagnosis is, relatively speaking at least, high intensity. Initially it is difficult to know what is enough and what is too much - and that is why I am so adamant about the rest days, to be sure. Once it has happened and you have severe muscle pain from overdoing it it is too late and may take days (if you are lucky) or even weeks to recover during which time you are in pain and possibly so uncomfortable you are disabled. So potentially unable to exercise at all.
If it is sciatica, gentle walking and gentle stretching should help. Do not bend backwards - that can aggravate it. If you can find a comfortable position, the temptation is not to move! It is just like pmr - you need some exercise but not too much. How do you know when to stop? Answers on a postcard please.
Thank you for your lovely detailed replies. I’ve spoken to my GP who thinks it’s sciatica. I’m already on enough analgesics for PMR so advised topical Voltarol 3 x daily and exercises to open the joint space. I do have osteopaenia and moderate arthritis in my lumbar spine. I am one of the lucky ones: I’ve been an exercise instructor for 38 years and still teach. (Online zoom classes at the moment!) So I have no muscle loss although I do get the pain and fatigue with PMR. I feel much better now I have a plan.
What analgesics for PMR? Most people find they don't help, mostly not even taking the adge off the pain. And be watchful with the Voltaren gel - even that is contraindicated with pred for longer term use.
It’s depressing how little GPs know. I felt I was informing her. I take paracetamol 100mg 4 times a day. Co codamol if it’s really bad. As directed by another GP
when Imsaid how much pain I was in. I’ll try the Voltarol gel for a week. I wish I could see my physio. He’s great with backs.
Does the paracetamol/cocodamol make any difference to anything in particular?
The Co codamol definitely helps, but I can't take too much of it. Maybe once a day when it's really bad: early morning or late afternoon. I don't think pAracetamol makes any difference tbh.
Then why take it? It isn't an innocent either - the long term adverse effects are there too. Are you sure you take 100mg? Or have you mistyped and mean 1000mg (2x500mg tablets). If so, that is the maximum recommended dose for younger people and risky over a longer time for people of PMR age.
I don't know your age but my doctor recommended extra strength Voltaren to me a couple of weeks ago for extremely painful knee (not the one I fell on!). I got free samples from the pharmacist and dutifully read the insert whereupon I decided not to use Voltaren. Even topical Voltaren can cause gastric bleeding and as I've already had two stomach bleeds in my life I thought right there was a major contraindication. Of more interest to the general public is the fact that Voltaren is recommended for use between the ages of 18-60. It is not recommended for older people.
So, instead, I had a virtual visit with my magic physiotherapist and had already obtained relief from two sessions of the exercises she prescribed which I managed before I injured my other leg and rendered myself unable to carry on for a while.
In the past for hip pain I've had considerable relief from applying heat (low tech hot water bottle) to the area of the spine where nerves controlling the hips originate, and to the buttock on the painful side.
This sounds more like sciatica as opposed to PMR. I'm not saying you don't have PMR I'm saying this pain is probably from sciatica. And what that simply means is that for whatever reason, be it inflammation or a disc problem in your back your sciatic nerve is being compressed which is causing the pain and tingling down your leg. If it's being caused by inflammation then prednisone could help it. However, the likelihood is that you have developed a bulging disc in your back which is not uncommon for us old folks. It's also called degenerative disc disease. There's a a lot of people our age with degenerative disc disease that do not experience any side effects and don't even know they have it. Then there are those of us that do have symptoms. Talk with your doctor because there are two prescription medications that can help with this kind of pain. Pregabalin and Gabapentin. But just like with any medication they both come with their side effects. I hear a lot of complaints about Gabapentin affecting people's memory after taking high doses for long periods of time. I don't take gabapentin anymore but I've never had any side effects from taking it.
I think you're correct on all counts. I have degenerative discs, seen on DEXA bone scan. I've had sciatica before, just not like this. It's easy to blame it all on PMR. I'm already on Pregabalin for anxiety, and I'm bothered that it's affecting my cognative ability, including memory....or is that PMR, steroids or just age???
Thank you for your reply. I actually feel calmer today after my GP appt and the replies on this thread. I won't bother with TENS, but I will try to see my physio ASAP.
I've never know anyone to take pregabalin for anxiety. I know it's used for seizure and sciatica but that is a new use that I have not heard before.
My PMR was caused by my anxiety of my husbands cancer last year. I had an anxiety meltdown just before my PMR diagnosis and was prescribed Pregabalin which really helped.
Does acupuncture work?
Can anyone relate to strange pulsing like a tens machine 
leg pain
Does pred work on osteoarthritis?
