I've had PMR since January, 2016, and have gone up and down, usually being able to walk OK including hill walking. Currently suffering a flare-up which has left me hobbling on a stick. Moved up today from 2mg to 7mg to see what that does (and will do more if needed). The discomfort is always in my knees, feet and legs while all the guides say it should be in the shoulders and upper body. My ESR has been steady at 6 for some time. Kate in her book talks about upper body pain but then says people can't get up after sitting at a committee meeting which would suggest leg problems. All this chat leads nowhere! Just puzzled about why the experrts never mention legs. I also have spinal stenosis which affects my right leg and can make my foot drag - I understand that John Thaw (Inspector Morse) had this problem. Thanks for bothering to read all this
Legs not arms: I've had PMR since January, 201... - PMRGCAuk
Legs not arms
Some doctors do accept that there can be leg problems with PMR and the right search question does find internet references:
activebeat.com/your-health/...
and
orthop.washington.edu/?q=pa...
goes as low as hips and thighs! If I spent more time on it I'm sure I could find more.
Having low back problems (common in PMR) can have quite a bad effect on legs and knees and of course so will your spinal stenosis.
John thaw certainly had foot drop.
I have would say that my thighs are really effected by PMR and it has caused pain and stiffness in my feet. I have bulging discs in my lower back and have already had one surgery. The nerve damage and pressure on sciatic nerves causes weakness, stiffness and changed sensations. Stenosis might be at the root but I have an sure PMR does mash lower limbs too.
Prior to my diagnoses (in December 2017) I had experienced horrible pain in both thighs for 18+ months. It was usually at the end of the day, when I sat down to relax; my thighs would start to ache. Sometimes the pain seemed to start in my buttocks and travel down (what felt like the nerve endings) into my thighs. Walking was difficult, as my legs always felt "heavy" and "unyielding." Hips were also a huge problem...
My first symptom of PMR showed up in my knees. One day I'm fine, the next morning my knees do not bend. Still working full-time, I forced myself to keep moving and mobility would improve sufficiently (with pain and stiffness) thru the day. Then every morning back to the same 'frozen' knees until I gave up testing my different hypotheses as to the cause and went to my GP. His preliminary diagnosis was rhumatoid arthritis, started Prednisone and quickly got me in to a rhumatologist who diagnosed PMR. Although he was surprised it started in my knees (plus nowhere else), the fact of the sudden onset of the symptom was key for him.
my thighs were hugely involved when I first got PMR. thighs biceps and shoulders
With lower doses,I'm trying for 7 and I'm getting pain in my knees. They fee like I have tight bands around them and stabbing pain when I try, that and lower back pain along with upper arms, thighs and shoulders, neck is okay at the moment.
The back and knee pain is a problem as I can't move around in bed without a lot of effort. Getting out of bed and off the sofa is hard, both are low and it takes a lot of effort to rise. In work I have a nice new chair which is higher than normal office chairs and also has adjustment at the front of the seat, this takes the pressure off my legs and makes getting up easier. Still have to stand for a few seconds before walking (hobbling) off. I could trip over a fag paper these days!
My PMR started in my thighs 2 1/2yrs ago. It is now mainly cramp in buttocks (Piriformis Syndrome) and can get pain in left leg like Sciatica. On 8mg Pred and take Paracetamol for pain in buttocks.
My symptoms are like yours now. Piriformis syndrom is a real pain in the bum. I'm stuck on 10mg and my rheumatologist is finally convinced I've got pmr as all the tests I've had have come back negative except for raised inflammatory markers. We're agreed on giving Methotrexate a go. Good luck on your journey and don't overdo it on those better days.
My thanks to all who have replied. Wish you all well
I had all my pain and stiffness in buttocks, thighs, legs and knees for about seven months. Like many went to a physio in first instance. Bloods normal but could hardly walk.
Googling symptoms during this time came up with things like MS. Also Doc suggested testing for this.
It was only when symptoms went to upper body that PMR entered the equation and blood indicators also rose rapidly once upper body pain and swelling increased. Interesting when so many on here state pain started in lower body????
What is key, regardless of where the pain is, is that with PMR the pain, stiffness etc is bilateral and the response to 15mgs of pred is amazing.
I must say that it started in my thighs and knees before moving to my hips and then upwards about a week later shoulders and arms.
After a year on Prednisone for PMR and GCA my major complaint is leg stiffness and blurred vision. Walking is difficult and because I have osteoporosis I am very concerned about falling
Before I took up Nordic walking myself (to improve my upper body strength and to help maintain an upright posture) I met a lady on our nearby trail who was using the poles, and I asked her about them. She told me she used them to help her balance. To deal with the problem of needing to carry things we use a small backpack as, of course, you can't carry a bag or purse when using the poles.
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