Leg pain

[Tayzee]

I notice most people complain of neck and shoulders being affected by the pain... anyone else just get pain in lower back, thighs (mostly) and calves?

[Rache]

My problem was mostly with my lower half. As well as pain, I was increasingly stiff. Eventually I couldn’t lift my legs to go upstairs and found getting out of a chair or even getting out of bed well nigh impossible. I had some pain and stiffness with shoulders but could always manage to raise my arms to wash my hair for instance.

[winfong]

I'm there with you. Mine's primarily in my hips and knees. Then again, I've been diagnosed with GCA as well as PMR, so it's hard to tell which is which and what is what.

[CarolF1312]

My main problem now seems to be knees, hamstring, glutes in that order. I do still get some stiffness in my shoulders/collar bone but not enough to limit movement.When I started with PMR in January 20, it was with a stiff neck and then hips but symptoms have changed over time. I'm currently struggling a bit on 5.5mg.

My Rheumy is of the opinion that knee pain has nothing to do with PMR but is OA. I'm very doubtful as had no problem with my knees pre PMR.

[Telian in reply to CarolF1312]

I have both. The leg problems seem to have worsened over time and stair climbing is an ordeal. You might have some OA which x-rays would highlight. I too have OA but my calf problems are muscular. You’re also on a dose where your adrenals are trying to kick back in and can cause a different weakness than you may recognise. Don’t be hasty in your tapering and listen to your body. It’s not unusual to stay on a dose much longer than you’ve been used to at this stage. Give your body the TLC it’s currently yearning.

[PMRpro Ambassador in reply to Telian]

You have been checked for PAD? (peripheral arterial disease)

[Telian in reply to PMRpro]

Think so. Had scan that shows calcium build up in the arterial walls - is that what you mean? Blamed the breathlessness on continually climbing stairs. Perhaps should get checked out?

[PMRpro Ambassador in reply to Telian]

In the legs? It is one cause of PAD symptoms yes.

[Tayzee in reply to PMRpro]

I asked go about PAD and he said that esr would not be raised with PAD so ruled it out

[PMRpro Ambassador in reply to Tayzee]

What a silly response - ESR goes up with all sorts of things and you COULD have two things going on. And another cause of PAD is vasculitis, inflamed blood vessels, which is likely to raise the ESR.

[Telian in reply to PMRpro]

Thanks, will pursue.... Thinking about it. apart from the stairs, I can’t stand for long as the discomfort/pain goes up into the lower back and have to sit down. I can walk better than stand in terms of pain.

[Telian in reply to PMRpro]

I started to take K2 when I found out about the calcification.

[Heron82]

Me too, I was unable to get out of bed without assistance as my legs were very painful, stiff and heavy and the pain in my grain was horrendous. I had to pull myself upstairs etc. Now 3.5 yrs on it is still mainly my legs - groin, thighs, calves but now also my lower arms that seem to be affected. Walking is slow and plodding some days and energy very low. GCA has become a feature also. Hey ho, thank goodness for pred, it may be awful but it allows one to cope and manage this wayward condition.

[ImC_]

Hi Tayzee, Yes, I'm a lower half person too! Low down the small of my back, hips, thighs, calves somewhat less so, seriously aching and stiff (this before Pred); couldn't turn over in bed or put my socks on without great difficulty. Stairs were an ordeal. Pretty much normal shoulders and arms.

[Joan-E-D]

My legs were affected too. My thigh muscles ached most of the time and got worse when I walked up hill or went upstairs to extent that I'd have to stop to recover from time to time. It affected my balance and made me walk rather slowly and a bit like a penguin.

[PMRpro Ambassador in reply to Joan-E-D]

The PMR walk - there are doctors who make a diagnosis when they see the patient walking!

[HeronNS in reply to Joan-E-D]

A young neighbour who lived next door, studying something medical, remarked to her mother that she thought Mrs ----- had bad arthritis, long before I had a diagnosis myself. Of course she didn't get the polymyalgia bit, but she observed how I was walking and struggling up my front steps.

[Koalajane]

My knees are stiff and I get pains in my shins as well, also between my shoulder blades

[HeronNS]

In retrospect I believe my first PMR symptom was difficulty standing after even a short time seated. Mind you, by the time I finally got diagnosis, I did indeed have "pain all over"!

[Marcy47]

Hi Tayzee,

my PMR started in 2015 with shoulder, neck and arm pain, but once I started on Pred that got better and the pain moved to my hips and thighs. I am just now reducing to 5.5mg and have lower back pain on getting up in the morning, this eases if I use a heat pad and keep moving around, so not sure if it is still PMR or old age (74). My thighs are pain free but the muscles are weak. My Dr said if I think it is a flare to come in for a blood test and they will check inflammation levels.

[Purplecrow]

Yep, most pain is in arms/shoulders and lower back, legs. Oh,...and I have the penguin walk and trouble with stairs also.

[Heard]

Like others I also never had pain in shoulders of arms always hope thighs and buttocks. Great difficulty in lifting legs getting in and out of car etc. I am on my second time diagnosis of PMR with no raised inflammatory markets, but I have a very good GP who agreed to let me start steroids at 20mgms for six weeks and this time I am following the very slow reduction over 7 weeks per 2.5mgms supplied by Dorset Lady and so far so good. I have the occasional day where I hit an absolute brick wall of fatigue and now I know not to make myself keep going but rest. All the great information on here has been so useful.

[Nagswoman]

I really believe that my pelvic, knee and ankle pain is PMR. The PET CT showed femoral artery inflammation as part of the GCA diagmosis. That was nearly 5 years ago but the pain is getting unbearable even on big codeine and I have been told not to use preds as an analgesic. Severe neck and upper body pain with the other stuff but just lower body now. I give up.

[PMRpro Ambassador in reply to Nagswoman]

"I have been told not to use preds as an analgesic"

Except they are forgetting that if pred works as an analgesic, it does so because it is removing the inflammation which is the underlying cause of the pain. The inflammation is a sign that the underlying disease is more active than they think - and uncontrolled.

[Nagswoman in reply to PMRpro]

Thanks PMRpro. I was great on 4mg and managed a 7 mile hike in hilly Scotland in November. On my return I began to taper to 2.5mg, where I have been since February.

[war40birth]

Yes, quite severe pain in left lower leg and foot. That's how it all started for me 19 years ago.Been on and off prednisolone ever since.