Question re Legs

Hi - has anyone actually been told by their Consultant or GP that leg pain is part of PMR? I know I've written about my leg pain and how the Steroids help it but I'm just wondering if its an "official" known problem with PMR - if you know what I mean. Because my Consultant and GP haven't acknowledged that it is. Apologies if I'm repeating here.

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I certainly get aching legs, especially in bed at night, like restless legs only worse and only sometimes. I don't know if it is a PMR symptom but it doesn't help. It's not listed as a diagnostic indicator symptom. Our muscles get very tired though.

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Mine seems to be more of a burning sensation that includes the feet n ankles and yes it’s more pronounced at night also. 🤔

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thank you both - yes I get that burning sensation and real bad foot and ankle pain which really went deplorable when I was taken off the pred. When I went back on it - it sorted out the legs and feet - though it depends on the dose of pred. The lower I go the pain comes back.

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I am sure it has been considered a symptom. The misnomer stiffness used perhaps. My feet and legs certainly pain/ed me.

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thank you. it ws one of the first things to get scary bad when they stopped the steroids. Sitting here now in work with my legs THROBBING because my steroids are a bit lower now. Never ending.

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Sounds daft but give your thighs a good rub and make sure you are not blocking blood flow and nerves on edge of chair. Hope they calm down.

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That is a good point Poopadoop!

Can work get you an ergonomic chair with a foot rest powerwalk? Or better still have an occupational health assessment of your work station to see how it can be improved. Nobody should have to sit at work throbbing with pain. Are you in the UK? If so your employer has a legal duty of care towards you.

When I worked in HR we got kneeling chairs and all kinds of aids and adaptations for people. It was one of the most satisfying things I did at work, particularly for visually impaired staff.

Make sure you get up and walk around often.

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I think I need a magic wand at this stage!! The pain is there whether I sit, stand or walk. As I say was much better in fact gone when I was on higher pred. But I can't see my GP giving me the pred for too much longer - s they are treating the PMR as totally arms/shoulders. Thank you for your reply.

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Are you just under your GP? If a symptom went at a slightly higher dose it is probably associated with the PMR. Of course - you could always lie...

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Very pragmatic and useful advice under the circumstances.

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That sounds really flare like powerwalk. My worst pains were in my groin when I was first diagnosed, I could hardly walk. If you have a GP that cannot think outside of the box, then you must lie to him. You need to return to your last comfortable dose before your symptoms get out of control. Are there several doctors in your GP practice?

Try another one. Newly trained GPS can be more flexible.

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Yes. I have pain in groin, buttocks and thighs as well as neck, shoulders and ribs.

My thighs have started to shake about half an hour after getting up too.

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So that you get a good picture of how I looked when first diagnosed and pain at its worst - I was walking like a gorilla with my Back bent forwards, head hanging down, arms hanging loosely by my sides, knees bent, legs open. Lovely picture isn't it 🦍

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That's all typical of PMR - I do wonder where they get their fixations from!

Another case too I'd suggest, of myofascial pain syndrome affecting the lower back and upper legs badly. My Bowen practitioner did offer a good service for that - but it doesn't work for everyone. The right physio/sports massage therapist would probably be able to help too.

How does the thigh shaking relate to when you took your pred? Or calcium?

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Well my Consultant was happy to have taken me off the Pred even though I could barely put one foot in front of the other after being off it for 4 weeks on her instructions. I also couldn't even dry myself properly because my arms got so bad. As far as she was cnocerned the markers were o k now so I needed to be off the pred (had been on it about 14/15 months). And my legs - according to her was fibromyalgia - which makes no sense as it responded so well to the pred. It was my GP who put me back on it because I ended up in tears and told her this wasn't working.

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Dear powerwalk, that is dreadful. I cannot contemplate that awful pain again before I started taking pred, it was excruciating. I am so glad you have a sensible GP. Why on earth did the consultant think they were giving you pred - to get the markers back to normal of course - what a dummy.

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yes - she had it that I was going to be on it for a year and I had to push for months for her to leave me on it becuse every time she lowered it too much I couldn't use my arms - even to pick up the phone. So after the 14/16 months she was absolutely delighted with herself - wouldn't even listen to me. Wouldn't go to her again. She said I could go back to her if the "markers" went up in the blood tests.!!!!

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Words fail me (well, they don't actually but they would be censored...)

What an appalling doctor!

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Just seen this, how disgusting she clearly doesn’t understand she should be treating the symptoms not just reacting to the blood tests. The latter can be notoriously unreliable.

If you can bother to complain about

her, do so but see someone who cares about patients, it’s a science but also an art

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Hi Sheffieldjane, I did not realize abominable pain was part is PMR. I get this and it is low by my ovaries, kind of a pulling sensation. I thought I was getting a bladder infection but my tests always come back clear. Is that what you experience?

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klaroche, hi. I get pains at the top of my legs and these are PMR pains, kept at bay by Pred. The bladder irritation is more like cystitis symptoms. I am sorry there are a lot of conversations going on, on this thread. I hope that was the answer, you needed.

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Thank you Sheffieldjane, I will check into cystitis.

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I think my Calcium supplement is the culprit. ( klaroche)

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I know! I characterise the stiffness and pain as flu feelings. It's just different language to describe the same thing. I wake up and feel sure I've got a virus ( a bad one) and then I get moving, take my pills and it improves - radically.

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yes - the pain wakes me up at night too. Thank you.

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SheffieldJane, Have you ever tried taking coated Pred.at night or immediate release @ 2am with some if you wake up. You might avoid some of the morning symptoms. At least that's what worked for me.

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Thanks Hindhags. I have never tried coated Pred and taking ordinary uncoated Pred in the early hours didn't help enough to warrant the waking. My bad mornings seem random which I don't like. I sometimes wonder if some of the tablets haven't got any Pred in them. My response has varied over the months.

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That 'burning sensation' describes exactly how my legs, feet and ankles feel almost constantly, although I do sometimes get more pronounced pain especially in my right calf.

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PMR = the oxygen supply carried through the blood vessels to our muscles is impaired. So this can and does happen to many of the muscles we use which then cause aches and pains.

Claudication is pain caused by too little blood flow, usually during exercise. Sometimes called intermittent claudication, this condition generally affects the blood vessels in the legs, but claudication can affect the arms, too.

Does this help to explain the situation. If not, use your search engine and read up on Claudication.

It can and does affect people without PMR, so not exclusive to us but.....................

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I will read up on that - thank you

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Hi Powerwalk I had the most dreadful calf pain the last few weeks before starting pred. It used to start within about five / ten mins of laying down. It felt as if it was deep deep down in my calves and was like nothing I have ever experienced before. It went as soon as I started pred . In the earlier months before diagnosis I had very restless legs and a sort of burning sensation. I am now at 2 mg and the pain has never returned . I am now walking a n hour a day and go to an exercise class twice a week. If I have tapered a bit too far or done too much I get tingling/ burning and legs are restless. I have always thought the severe pain was due to a build-up of the inflammation and by this stage in my PMR journey I had also become like the tin-man/woman.

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Thank you - its a minefield.

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I suppose it depends what you mean by "leg pain", And there are a lot of rheumatologists who appear not to have the slightest idea what PMR does to the patient!!!

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Here Hear!!

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Absolutely agree with that!

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I know what I would do if symptoms were relieved on higher dose.

Feel better

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Exactly!

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If it`s any help, recently it is happening to me. I still have to explain this to a con...sultant who I`ve seen last week. I`ll keep my opinion until this guy has decided to prescribe medication. If nothing is forthcoming, I`ll ask for a different referral.

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yes would be interesting to see how it goes.

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Don’t think I can help a lot. I never know where my pain is going to be next. (In addition to neck and shoulders where it’s nearly always around)! Steroids have helped me manage. I try to help them by doing stretches every day - just as much as I sensibly can, yoga and anti inflammatory diet.

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Honestly every little bit of information helps - because if it wasn't for a forum like this - I would have been doing what the Conslutant said and literally be in agony with pain all over - until the markers went up again to a bad state probably - then she would take me seriously. Thank you.

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Hi Powerwalk,

My PMR started in my thighs and hips, a feeling that you have run a Marathon and your legs are painful and have no strength at all. 20mg Pred soon sorted that out. I did have some pain in shoulders and arms as well but mostly legs. I was OK until I lowered my Pred to below 10mg when pains returned. I stayed on 10mg for over a year and am reducing again now, slowly down to 9, heading for 8.5 next week. It has been complicated by getting Sciatica which has affected the left leg, stabbing pains in Buttock,hip,thigh, knee, shin and ankle, (not all at the same time thankfully), I have had this since August and find Paracetamol the only thing that helps. My Dr ordered X-rays of left hip and leg last week, seeing her tomorrow for results.

Marci

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yes - like your legs are literally going to pack in - I think the medical profession think we just make this up. Everything seems to be involved - including feet and ankles. Thank you.

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Marcimay - sounds like myofascial pain syndrome or piriformis syndrome - both will pinch the sciatic nerve and cause the symptoms. Nothing will show on an x-ray so don't let your GP tell you there is nothing wrong just because the x-ray shows nothing.

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Yes, pain in the calf muscles when walking. They are rock hard and the pain only stops when I stop walking. Looking back I think this was the first manifestation of pmr which became full blown about four months later. Feet also burning and ankle pain, one leg only, when I go upstairs.

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Gaycreasey: Has your doctor checked your ankle pulses? Or sent you for vascular disease testing? Because he should - what you are describing is claudication and isn't really normal even in PMR.

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no - never mentioned anything like that or checked pulses - just said it was Fibromyalgia.

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Sorry - the question was to Gaycreasey. Darn the nesting on this silly forum!

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Thanks PMRpro. I'm actually seeing my GP tomorrow ( if I get there at 8.15 before the doors open at 8.30 so I can get one of the 5 appointments available) I'll definitely discuss this with him.

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Hi pmrpro. I did get an appointment with my GP. I say ‘my’ because I have been with the surgery for 12 years and he is the only one who really knows me. I went there with my list and he took a look and said I would need 4 separate appointments for that. I said, ‘ I should be so lucky!’ In the event he had a think about the leg pains and I suggested it might be claudication. He didn’t dismiss that and had a look at the pulse in my right foot. He said it was strong and my foot was warm. He thought thr pain could be the result of taking losartan for high blood pressure. He suggested I stop taking that for now and see if the pains stop. I take those and Cardura. So, I am trying this and doing some stretching exercises for my calves. He also sent me for a chest x ray as I have a constant cough. So that’s two ticked off the list!!

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Losartan doesn't trouble me - but I am on a tiny dose! I'm on 2 very low doses rather than a single higher one which seems to work well.

It's all very well saying "4 appointments" but that would take longer in the end than getting on with it there and then instead of wasting time telling you that! Especially since, actually - they could all be due to one cause! And 4 appointments with the same person? In your dreams!!!

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I have great trouble with my legs and new doctor has put me back on pred a high dose for 5 days. After one dose the leg stiffness went I cannot believe that it is not pmy but there is still a lot of doubt with those who know!!

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PW..i don't know if you in uk. If so I found pain clinic was really good as it gave me access to physio and psychologist. I was able to discuss strategies to manage pain and life more effectively. Not saying it was perfect but kept me working longer especially after being fully assessed in work place and getting equipment. Was a bit of a fight with employers but helped me.

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Hi powerwalk...Given everything you have said I would see if you can get referral to pain clinic. They at least will address 're possible fibromyalgia. You can request Dr checks your pulse in feet. It takes 2 mins. I had mine checked as part of diabetes check on Tuesday.

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Hi, I can attest to that. Some days I cannot make my legs move they are so heavy. Don't know if this qualifies as pain but it has certainly been attributed to any other condition. I also get burning thighs and pain around ankle like a band is surrounding it. Something new all the time.

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So many weird pains come with PMR. My knees are swollen and a bit on the painful side, but it's the soles of my feet that cause the pain. I walk like I'm on hot coals.

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yes I know the hot coals well - its exactly like that - or trying to walk barefoot on a beach of stones! Whats with the burning??!! People would think you were making it up. Its just so debilitating trying to cope with all this and the horrendous fatigue. Thank you.

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It wasn't so much burning I experienced but a feeling as if the linings of my shoes were sandpaper!! And the walking on sharp pebbles mixed with broken glass.

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Well my doctor specifically said that my leg pain is not related to my PMR. But I don't care what she says during my initial diagnosis leg pain was a definite problem. I also have pain in my hands as well.

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Yes hands too - I don't think there's much of me left thats not paining. I think I need to up the pred for a few days - I have been trying to lower it a little bit. Don;t know how I got into work this morning!

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Hi Powerwalk. My legs have been a major issue pre and post PMR. They began troubling me in October 2007, I was diagnosed with PMR in March 2014 after nearly ever muscle in my upper and lower torso melted down in pain and weakness. Docs then decided the leg issues were PMR all along.

After reading your post I decided to look back on some of my notes. Here's what I found.

June 2010 (4 years prior to PMR diagnosis)

Heaviness and stiffness is always present when standing. Legs feel heavy and I feel as if I'm dragging them. They are tender to the touch, as if slightly bruised.

Getting in and out of a vehicle requires concentrated effort to lift the leg into the car. Same situation getting in and out of the shower. Forget using a bathtub!

Getting into a kneeling position is difficult and once on the knees the leg pain is intolerable. Not knee pain…shin pain…like my legs are pressing into shattered glass.

Stairs have to be taken slow and easy, often favoring the left leg i.e. up with the good down with the bad, even though one is not that much worse/better than the other.

After standing for any length of time legs get progressively more heavy, tight and stiff. It becomes painful and harder than normal to walk and raise the feet. Forget doing stairs without major struggle. When sitting down after standing for 1 - 2 hours feet and toes feel bruised and tinkling occurs in the calves…like little sparks going off in the muscle.

Medication is taken rarely as it does not seem to bring any relief. If taken, 2 - 8 hour slow release Tylenol are used; occasionally ibuprofen.

Pool exercising done without any issue. Usually 3 times a week for 1 hour.

November 2017 (almost 3 years post PMR diagnosis)

Even after being diagnosed with PMR in March 2014 and having taken prednisone since that time, my legs are still the same.

Legs returned to normal when originally started on 40 mg of prednisone. I felt like I had a new lease on life and was actually running up and down stairs. However, following a flare of the PMR after reducing prednisone too rapidly in the first few weeks, they became just as bad as ever, even after a returning to the 40 mg for a month. They are the same today at 10 mg.

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oh you have just described my legs. I actually cannot believe that something can pain so relentlessly - and yes been going on years - the prednisone did help enormously when I went on it for the PMR - no pain - then when taken off it - all hell broke loose. I could feel it coming back as I lowered the pred - but nothing that I couldn't live with. Being off it altogether was just hell. After going back on the pred the pain in the legs and feet improved again - I literally can barely put one foot in front of the other without the pred now. Its a nightmare - thank you for your reply - very much appreciated to everyone.

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I had leg pains and cramping until I started the prednisone then they stopped. Hope this helps. :)

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