Heavy limbs

[Jigsawlass]

I've been trying to explain to my v patient hubby how I feel . At the moment my limbs feel like lead, v heavy and walking is an effort . He suggested exercise like cycling may help...I'm not so sure ! But is this fatigue or is it muscle wastage kicking in ,in which case exercise probably would help. Any suggestions?

[piglette]

The fatigue is part of the illness. The steroids just help the pain, they do not cure us sadly. Do you think you are on the right dose?

[Jigsawlass in reply to piglette]

I have v little pain apart from a little down the back of my right leg and if I do too much then I will get twinges etc so I definitely know when it's time to rest, which is often !

[piglette in reply to Jigsawlass]

That is the PMR mantra. Rest, rest, rest.

[SheffieldJane]

It could be a circulatory thing. I would consult my doctor. Any other symptoms like burning feet, swelling or restless legs ( which I get and Magnesium helps). Try to elevate them when you can, I stretch mine and circle my feet. This heat is not helping.

[Jigsawlass in reply to SheffieldJane]

I don't have any other symptoms in my legs no.

[123-go]

It may well be that you have reduced your Pred too quickly. To reach 9mgs eight months since diagnosis suggests that the inflammation in your body isn't being sufficiently managed. Will you tell us the dose you started on and how you reduced? I personally would not contemplate reducing while having the symptoms you describe. I also note that you are going on holiday tomorrow-have I got that right? It may be wise to up your dose and others will advise on that. I certainly wouldn't be taking on activities like walking distances.Your husband is clearly trying to support you but whatever exercise you undertake should start off gently and for short periods. Pushing through pain and discomfort is likely to be counter-productive and you should avoid over-working your already stressed muscles. Pacing and rest are vital with PMR.

This all sounds rather doom and gloom but you have to remember that you have a chronic inflammatory disease. Please have a look in 'Related Posts' at the right of screen to read about others' experiences of symptoms you are having.

Take care.

[Jigsawlass in reply to 123-go]

My reduction has been quite steady . Started at 15 then 12.5 after 3 weeks . I then went to 10 which is what consultant advised, after a week I put myself back to 11 and stayed there for 6 weeks I think on new consultant's advice. Down to 10 for a month and now 9 with no issues. Due to go to 8 after our holiday but may wait a week or so once back . I certainly wouldn't consider any exercise which causes pain , was thinking more gentle stretching to get those limbs moving 😀

[123-go in reply to Jigsawlass]

Thanks for the info 🙂. DorsetLady posted this very helpful link a while ago which I'm sure you will find interesting:

healthunlocked.com/pmrgcauk...

I hope you have a lovely holiday.

[Jigsawlass in reply to 123-go]

Thanks for this link . I think I will restart the NHS Pilates for beginners I was doing , but just the first 10 minutes or so

[123-go in reply to Jigsawlass]

That's a great idea. Slow to start and gradually build up as Koalajane suggests will be the way to go.Kendrew and others do gentle yoga which suits them.

Walking is my 'thing'. I started with a slow, short shuffle (the mind boggles!) four years ago and built up to a comfortable 3 miles + which is fine for me. I do some stretches on most days and sometimes before I go to bed 😀.

[Koalajane in reply to Jigsawlass]

I think you could perhaps slowly build up your exercise, just by walking a bit and then a but further etc. that is what I did, but do it steadily

[Marml]

I have had this for five years or more gradually getting worse, I was recently diagnosed with Stenosis of the spine, I thought it was PMR related as I have had it for 8 years

[Pollyanna16]

I feel this & have felt it particularly in the heat when walking a distance. So it does muck up our holidays sometimes! I would agree with all of 123-go’s comments though. Enjoy your holiday x

[Daniella7]

I have what I’d describe as ‘heavy legs’ quite often. It started happening just about the time I began to get some pain and stiffness. Then the pain and stiffness got worse and my Dr diagnosed PMR. As I have had this problem before I took prednisolone it obviously isn’t related to the steroids but part of my PMR symptoms. I feel as if my legs are so heavy they are going to drag me down and I’m going to collapse! Fortunately that’s not happened. I try to walk whenever I can if I’m not too fatigued but not as far as I used to do so.

[Gin13]

I get the heavy feeling in my lower legs and sometimes a dull ache, my rheumy told me it’s all part of the illness. I get a lot of pain in my hips and knees, I’ve now been diagnosed with Non Radiographic AS rather than PMR, it showed slightly in a PET scan.Some days I can walk a couple of miles fine but I suffer for days after, other days I can only walk a very short distance, personally cycling works for me and all I get is saddle sore 🤣

I hope you have a lovely holiday.

[JGBH]

It might be sensible seeing your GP as this could be a circulation problem. Better safe than sorry. Do hope you can get help.

[Longtimer]

Have had very heavy legs the last four years or so...(diagnosed 10 years ago with PMR)....I tell people my legs feel like 20 stone each...but I weigh just under 10 st!.....After telling my very thorough Rheumy how I felt, he sent me for test on my legs.....there is a name for it but can't remember!....(brain fog while lowering!).... needles tested the nerves et c in my legs, nothing showed.....I have severe fatigued nearly all the time, so I presume it's part of my adrenal sup pression....

[HeronNS in reply to Longtimer]

Nuff1 is referring, I think, to what we call in North America a pedal exerciser. I got one, nearly two years ago now, and have found it invaluable to regain muscle strength after dealing with knee injuries caused my muscles to start wasting away. i still use it from time to time for maintenance, You can get a very cheap flimsy one but I believe money is better spent on a sturdier one with some weight to it. Using one was recommended to me by my physiotherapist. It works different muscles than either a treadmill or an exercise bike, and while it strengthens important muscles it is easy on the knees. This is mine:

amazon.ca/TODO-Exercise-Exe...

Shop around for the best price. I think we paid about C$70 two years ago, so the price in this particular ad is good.

[Longtimer in reply to HeronNS]

Sorry but did you mean this for me, I only ask because I do have a pedal exerciser which I sit and do in my summ erhouse, but not often enough real ly....fatigue holds me back!.....and our very hot weather at the moment!....🌞😕

[HeronNS in reply to Longtimer]

I saw a reply by Null1 which I thought was meant for you, to which I was reacting, but now I think it must have been Jigsawlass . Sorry!

[Longtimer in reply to HeronNS]

No problem...👍

[Nuff1]

Try treadle and floor pedals (seated) on low resistance to help maintain joint mobility and circulation. Floor pedals on the market or in local gym - treadle not so easy unless you already have an old sewing machine or spinning wheel.

GP may refer you to a day hospital (when I was working in one I used to have an old treadle sewing machine as "official" equipment.)

[PMRpro Ambassador]

nuigini has had the heavy legs problems for some years - there are several others too. I don't think mine feel heavy - just wobbly!!!!

[Jigsawlass in reply to PMRpro]

I'm thinking it is fatigue related possibly, slightly better today

[nuigini in reply to PMRpro]

As PMRpro has said, I've had heavy, weak legs for a long time. Actually for 19 years! Seven years prior to PMR diagnosis in 2014.

In addition to the heaviness, both legs from top to bottom feel bruised to the touch. Was it PMR all along??? Is that why it took 40 mg to get PMR under control? For the first 6 weeks on 40 mg I had my old legs back. It was wonderful, I was running up and down stairs again. Docs had me reduce too quickly and a massive flare put me back to 40 mg, and after a month I still had not got my legs back again and started back on a more sensible reduction. thanks to having found this forum and others in force at the time

Over the years I've had a circulation test and a nerve test, which did not reveal anything. The legs have become worse over time .

I'm currently on 13 mg prednisone , having reached 10 mg twice, but not in some time. thanks to minor and major flares.

I have relied on water aerobics for many years to keep the muscles in pretty good shape. I haven't had access to a pool for the last few months, and made a serious effort to increase walking and step counting. I do believe there is some improvement. I've also lost 10 pounds, which may have helped. And, as much as I hated to do it, I stopped enjoying my nightly glass or two of wine ion August 1st, which a positive affect as well. I'm NOT happy about the latter and will definitely be reintroducing a sip of wine in a few more weeks to see what happens.

I have lumbar spinal compression. Could that be the cause??? Exercise has helped with the back pain, but not the legs.

Whatever, my GP and Gastroenterologist (diagnosed with Celiac disease in 2018 and Microscopic Colitis in 2021) don't seem interested in helping me find the reason or solution.

Then again, I've read so very many posts on HU looking for answers on the topic that I could be easily convinced it's the PMR.

[Jigsawlass]

Thankyou to everyone for your responses, all v helpful. Off on hols tomorrow with enough extra Pred to make me look like a drug smuggler! We have a jacuzzi/plunge pool which I am sure will help

[SheffieldJane in reply to Jigsawlass]

That sounds perfect, have a lovely time!

[nuigini]

A CT scan a few years ago did not indicate lumbar spinal stenosis. It may be time for further investigation. The symptoms seem to fit.