Weak legs

[Golfer63]

Hello everyone

I was diagnosed with PMR 6 months ago. Has anyone experienced leg weakness as well as the normal morning stiffness.

Thanks

[Koalajane]

Yes I certainly did at the start of my PMR journey

[Golfer63 in reply to Koalajane]

Thank you. I have spinal stenosis as well and have difficulty walking for any length of time. This all seemed to happen overnight. How long have you had PMR and are you still experiencing symptoms related.

[Koalajane in reply to Golfer63]

I have had PMR for over e years and my legs are okay most of the time apart from being stiff. I use a walking stick if walking far or in uneven ground.

[Whippetygirl in reply to Golfer63]

I had an operation for spinal stenosis two years ago which was successful. Diagnosed with PMR March 2019 I have noticed that the muscles supporting my spine are now not as supportive and I too am getting weakness in my legs again. The numbness in my left ankle has never improved due to nerve damage but I still walk my dogs twice a day for which I am truly greatful.

[PMRpro Ambassador]

What do you mean by "weakness"? Officially PMR doesn't lead to "weakness" according to objective testing but our perception is of weakness.

[Daisyfield]

Yes definite weakness, especially going uphill. On the flat is better. And cramping if I do too much.

[Golfer63 in reply to Daisyfield]

Thanks. My right calf muscle is the mist noticeable. Cannot fo a toe stand. It mainly feels like it’s in my hamstrings and flutes. I do get done cramping in my lower legs at times.

[Richnroo]

I felt my legs were very weak at first. I think it was a perception of weakness rather than actual weakness. Very unpleasant regardless.

[Amber1414]

Leg weakness, especially climbing stairs or hiking, is my number 1 complaint!

[Mojo63]

I have exprerienced Weakness in the legs and arms. Also shaking.

It does pass.

[DogAgilityObsessed]

I currently have a weak feeling in my legs and noticed it especially walking up hill yesterday. BUT I am putting it down to over working muscles in the last few days. I’ve had an agility training session and started scything our meadow (by hand with a grim reaper type scythe). Fortunately I’m not getting pain.

[Marcy47]

I have had PMR for 5yrs now and have had weakness in thigh muscles all the time. If I crouch I cannot get up again unless I push myself up with both hands on the floor. I also get cramp in early morning especially in left leg.

[jarn in reply to Marcy47]

Hi Marcy: yes, the crouching weakness applies to me too, but has been improving. Tapered off Pred (doing Tocilizimab injections) and it seems that have had to rehab many parts of my body as a result of the Pred! I just keep trying to do wee hikes/walking and hoping that it strengthens. At least I can now walk without a walking stick but need to be on level ground. Balance is questionable.

[Hidden]

Weak hands and most distressing, weak bladder, non of this before pmr though I'm told it's not a pmr symptom.

[PMRpro Ambassador in reply to Hidden]

What - the bladder problem? I told Prof Mackie about it being common and she was surprised but instead of denying it SHE asked her patients - and having got the information, said yes, obviously it is!

[Hidden in reply to PMRpro]

Thanks for that, I thought it might be further bodily deterioration! Not as bad as it was, though don't like to be away from a loo for more than 2 hours 🙄

[PMRpro Ambassador in reply to Hidden]

Mine was bad pre-pred and improved on pred. But the biggest improvement has been since stopping calcium supplements - I DIDN'T stop the vit D though. I increased that.

[maria40 in reply to PMRpro]

I hadn't made the connection but since stopping Adcal and switching to seaweed based calcium in February I have frequently been able to sleep through the night without having to get up for the loo and seldom have to dash during the day. I too have increased the Vit D. (Saving on the panty liners too.)

[PMRpro Ambassador in reply to maria40]

Exactly!

[Whippetygirl in reply to maria40]

What seaweed based calcium I have not heard of that one.

[maria40 in reply to Whippetygirl]

I think there are several kinds available but I get mine from Higher Nature online. I take 4 tablets a day, two at lunch with my vitamin D and vitamin K2 and two more in the evening. I began taking these after I developed kidney stones last autumn and dropped the AdCal with GP approval; they seem to be gentler. GP thought I would be getting enough calcium from my diet and it was the Vit D which was important. I'm having a calcium and Vit D blood test in ten days so I shall find out what's happening then.

[Whippetygirl in reply to maria40]

I too developed kidney stones due to taking too much calcium, I stopped taking AA and Cal D3 and never had any more problems.

[Whippetygirl in reply to PMRpro]

Yes I too have that problem due to a pelvic floor prolapse , my GP said PMR affects any muscles it fancies unfortunately.

[PMRpro Ambassador in reply to Whippetygirl]

Yup - anything a bit dodgy will get dodgier ...

[Jan_Noack in reply to Hidden]

wow never knew the bladder was PMR related. I thought it maybe had something to do with hashimotos or thyroid as the T3 thyroid hormone works the bladder splincter ( think I was told by a gyno-urologist). When I first started on thryoid T3 hormones (via pigs throid) my bladder didn't work and I count pee at all for a couple of days.. then as I stopped the thyroid eds it gradually trickled out. It took a while to get use to having a more eusul level of thyroid hormones in my body!..and I started at only 1/4 grain (about 16mcg equivalent of T4 and about 2.25mcg T3). I've had bladder problems since 2005 (that was around 2002 or 3 with the thryoid hormones..(from memory). I had prolapse diagnosed in 2005. (age 50). I had before thyroid hormones with the T3 included kinda NO bladder control I would coug a lot and just leak out. I'd had it for years or laugh or jump up and down ..or hear water etc.. since about 30 or 35..so about 30 years ago. about when my autoimmune problems started showing actually hmm.

my problem was I didn't even know about pads then! and the menstrual ones didn't hold it.. so I was confined to running to the toilet and wondered how I would ever get to have a jo again b!..I didnt' as it turned out but... It HAS improved since prednsione too.. hmmm

i was supposed to have that mesh implanted front and back prolapses in surgery but refused after the gyn-urologist from eh US I used to talk with in a group was being sued for using the mesh and warned us about it.. back in 2005. It's only come out in Australia recently!

[Hidden in reply to Jan_Noack]

I was told years ago that the mesh implants can cause terrible problems. My younger self would be horrified at the thought of popping behind bushes, luckily I live in the country. My dogs are not impressed as I'm obviously not as expert as them! Good luck.

[9lives]

At the start my legs were really ‘heavy, ‘ is how I would describe them, if I was sat down I could Not get up because I had no strength . it was because of this that I saw my GP and was diagnosed with PMR , in 2016.

When ever my legs go heavy now I know I have reduced my prednisone too much.

They are my markers.

Carole

[Italy2]

It's helpful to know that others experience the same feeling

[Gaycreasey]

I was diagnosed in November2016 and had already had difficulty with my legs in the summer of that year. I didn’t connect the two but as time has gone on the leg problem has got progressively worse. I have had lots of tests and been seen by the Muscular and Skeletal clinic. They could find nothing wrong. The problem has got so bad that now I feel disabled by it. I live by the sea and love going for walks along the seafront. Now I can only walk about 100 yards and I have to sit down, rub my calves that have become hard and very painful and wait about ten minutes for the pain to ease. I then walk a bit more and the same thing happens. Progress is very slow! I really need to see my GP but don’t feel confident that he will be able do any more than he did before. My legs also often feel weak and that, I know is the pmr symptom. Got to keep going but I feel your concern, Especially as golf is your thing.

[PMRpro Ambassador in reply to Gaycreasey]

If MSK can't find anything - maybe you need to ask your GP to refer you to the vascular team. Those symptoms are very suggestive of claudication, a lack of adequate blood flow to the leg muscles when they are being used. The blockage could be anywhere and it is not uncommon to find peripheral vascular disease in vasculitis patients.

I know it is uncomfortable, but the first recommendation is to try to walk through the pain which over time should extend the distance you can manage. But 100 yards is the point where you need expert diagnostic tests.

[Gaycreasey in reply to PMRpro]

Thanks PMRpro. I have been to the Vascular Clinic at the hospital and was told by the consultant that I have ‘beautiful pulses in both ankles’. I have to say that my GP was somewhat aghast that that was all he did and was able to make a diagnosis based on just feeling the ankles! I have been trying to walk through the pain but it is excruciating and only calms down if I stop walking. This has worsened dramatically recently which is what has prompted me to say I should go back to my GP as I am now beginning to feel disabled.

[PMRpro Ambassador in reply to Gaycreasey]

Try a different vascular clinic too! He may think that is good enough but he is wrong.

My husband ran the vascular lab for years, it is his realm, and he says you can have PVD in diabetes with normal pedal pulses. That I assume is a capillary level problem within the calf muscles.

It can also happen with blockages in the abdominal arteries at a high level, aorta or other major artery for example. That is a possibility if your PMR is due to LVV (large vessel vasculitis).

jamanetwork.com/journals/ja...

is a link to an oldish but still valid paper for your GP to read.

Another possibility is a neurogenic problem and a referral to a neurologist would be useful. Do you have to sit to relieve the pain?

But definitely go back to the GP - asap. The longer it is left, the worse it will be.

[Jan_Noack]

yes definite weaknesss=, though measured OK at rheumatogists for strength and not believed..told I can get only pain and the pain is topping me, but this is not true. I couldn't get out of the bath ,due to leg weakness, not pain (though pain there also)> it was more I could barely feel any muscles. When pain was bad trying to get out of bed, I also had this no ability to move? It is maybe pain off the wall.but stuck half in bed half out of bed with pain searing hr=thru for ages as couldn't move. Pred has helped but at times in fust year I was overcome trying to walk uphill especially (not a steep hill), but could take 30 minutes to get maybe 100 yards! A colossal effort , and visonin blurring and I'm sorry couldn't describe the feeling.

Now I get some weakness, its more overall not just in legs, though legs was where I noted it most in first year, due to inability to stand up.. but now I maybe cant lift the doona on my bed..I can now roll over which I couldn't do at the beginning. When I'm tired after sitting for more than an hour or so , my arms will start shaking a little bit but if I then lie down it goes.. I have been told this s not PMR, so maybe I have something else..who knows??? One thing though my last dose of 5mg methotrexate about 30 minutes after lying in bed I could then lift the doona, no effort at all, I could then rollover..wow how easy and I could then site up..and I even went for a walk outside and it was amazing no pain or any effort to walk fast up the hill?? Not saying the methotrexate was all good..still felt a very mild headache and off a bit but was astounded it was more a hot on the weakness than the pain and not expected at all..hope I can stay on it ... I've been reading about other things too and maybe there is this broad spectrum which they have categorised into different things like PMR (for shoulders and arms) and hips.. and ankylosing spond.?.. (forget now )for pain below and hashimots encephalopathy or AE for brain.. ..still reading but there seems to be a lot of overlap between various inflammatory conditions. So guess I'm saying I have had it and still have it but to a much reduced amount but I'm not even sure if it's supposed to be part of PMR. I had been told by rheumatoligts it's not. Sorry for getting off track here... I am confused about all of this but it is , in a strange way, good to hear others have a weakness

[Golfer63 in reply to Jan_Noack]

Thank you. My rheumatologist told me that it may be from the PMR but not enough data to say for sure. Initially all my inflammation markers were off the charts. I did some research and with a suggestion from a friend I went to see a functional/integrative medicine doctors 4 months ago. They did extensive tests on me and pretty much discovered that my immune system was totally depleted. Now,after following their program, all my inflammation markers are normal and my immune system is almost back to normal. I do feel much better but now am addressing my legs issues. I started on 20 mg prednisone and am now at 10 soon to be nine. Thanks to everyone who has responded to my post. We all share something (which I wish we didn’t). I find it hard for friends and family to understand how I feel. Sometimes depressing.

[PMRpro Ambassador in reply to Golfer63]

Nothing to do with the pred that the inflammation markers are down to normal range?

[BonnyQuine]

Have read all these replies with interest. I have GCA but not PMR. Diagnosed in Dec 2016, and now down to 2mg - 2.5mg prednisolone alternating.

It was soon after starting 40mg pred that I began to experience muscle weakness. Some of it was generalised, debilitating fatigue, but some of it was definitely muscle weakness - all muscles (including bladder as mentioned) but worst in the legs. I also couldn't get up once down.

After 3 and a half years, it has mostly greatly improved. I do still have to struggle getting up once down, but can at least manage it now. The muscle atrophy is most visible in my arms, which are now thin and rather wrinkly. Before GCA (aged 69) they were plump and smooth. Probably due to prolonged inactivity, contributed to by aging - but the change has been disconcertingly rapid.

I'm now 73. My legs still look ok, but have lost a lot of their strength. (I used to have solid, muscular walkers/dancers legs).

Must say, I thought it was due to the high dose pred - one reason why medics are so keen to get you off it asap. But who knows?

By the latter half of 2019, I had embarked on a long, slow process of gradually regaining fitness. Unfortunately, due to lockdown + shielding at home, this process is going to be a lot longer and more gradual than I had hoped. (Worst = no choir!) However, I'm counting my blessings and will persevere. The most debilitating thing is the generalised fatigue, which I find is very persistent. Probably contributed to by the steroid-induced diabetes.

So, whatever the cause, I guess weak legs are par for the course.

With a bit of luck and a lot of determination, we shall overcome!

All the best.

[jessiem]

I have what I would describe as jelly legs - I don’t know if it’s the pred, the pmr or anxiety. Unpleasant nevertheless.

[Golfer63 in reply to jessiem]

How long have you had PMR and your leg issues? Is it both or one more predominantly?

[jessiem in reply to Golfer63]

I was diagnosed in May. My legs have felt wobbly/heavy since taking pred/diagnosis. Yesterday they felt like jelly, today they feel heavy. Usually gets better by evening. I don’t have any pain in my legs but fatigued if I do too much.

[Joannarosa in reply to jessiem]

Yes, me too! I can do sit- to - stand exercises no problem, get up off the sofa without using my arms, etc - so presumably no physiological weakness - but after very little walking around, my legs feel wobbly as if I have just climbed a big steep hill. And I cant walk very far without having to stop. What can this be?

[jessiem in reply to Joannarosa]

I can only think it’s a side effect of the pred or the illness itself

[Golfer63]

Thank you. I was diagnosed in April and also have the same symptoms in my legs. Frustrating!!

[tangocharlie]

Leg weakness along with the shouldr pains was one of the first symptoms for me. It's better on higher dose Pred but I still find myself having to kind of 'stiffen' and tense my legs to stay upright and walk, and then I'm OK on the flat but not hills or steps. I also ae water retention going on in my legs and ankles which disappears if I take higher steroids, so it's something seroid-responsive. PMR is on a spectrum, and I think some of us just have more inflammation in more places

[tangocharlie]

Just a thought - are you on statins as they can cause leg myalgia?