Ankle weakness and pain on the stairs,

[SheffieldJane]

I was disturbed last night by an annoying sense of weakness in my lower right leg, almost like restless legs. Today my ankle gives me sharp pain as I come down stairs and then I limp. Is this a symptom others recognise? ( PMR, GCA,LVV) Pred around 10 mgs and Tocilizumab injections.

[YuliK]

Sorry Jane to read your having problems...

Yes this has happened to me, it’s pretty scary when going down the stairs, as I always feel the ankle will ‘give out’ and I’ll fall down the stairs.

Lately I’ve noticed that I can have a really strong pain in different parts of my body. Each time lasting 24-36 hours. Then everything is back to normal. 😩

Sometimes my knees, sometimes my shoulder, sometimes my neck, sometimes my hands, sometimes one or both hips.

Luckily for me, it’s not all at once..

I have had a couple of times a flare when all my body is involved.

But the pains which happen individually are quite puzzling.

Hope you will feel better soon Jane.

Just thought I would let you know what I am experiencing , I hope it will help you and possibly others.

By the way, the pain I experience passes after 24 hours, then a few days reprieve and then something else.

Yulik 😷

🌹🌹🌹🌹

[Constance13 in reply to YuliK]

That sounds more like "travelling arthritis". Look it up! C. 👵🏻

[YuliK in reply to Constance13]

Good morning Constance

Thank you , I’ll look it up. My, my, one learns something new everyday.

Never too old to learn. 👍

Keep safe.

Yulik 😷

[ClarkB in reply to YuliK]

I have the same, and the sharp pain can appear anywhere. It frequently appears like a stabbing on the back of my calf, my foot, back shoulder, below chest-anywhere! The same thing occurs on my head, and there I’m left with dull pressure aches. I have mentioned to dr but am not told what it could be, probably because the phone call is to discuss other conditions.

[Joanbill13 in reply to YuliK]

Same thing happening to me last few

months. Sometimes one leg sometimes both. Same with top of arms or wrists

[Constance13]

Sounds more like arthritis to me Jane. Feet painful and weak, ankles swollen. Do pain killers help? If they do it would 'prove' it was arthritis. Hugs 🍀🍀

[YuliK in reply to Constance13]

Constance, Hi, it’s me again.

Just had a quick google , and by Jove , you hit the nail on the head. Travelling Arthritis.

I’ll remind my rheumatologist about it when I speak with her.

Thanks so much.

YuliK 😷

[ClarkB]

I have something similar Jane, mainly on my lower left leg and ankle when it gives way, particularly if I’m walking downstairs. It can happen if I turn suddenly too. I then feel a weakness as my left hip can give me problems even without the above. Having several health conditions I never know which is creating the problem!

[YuliK in reply to ClarkB]

Clarke Hi there

Maybe your arthritis is travelling too.

Well we are a fine lot aren’t we. 😱

Never a dull moment. 👍

YuliK 😷

Stay safe. 🌹🌹🌹🌹

[ClarkB in reply to YuliK]

Indeed! I didn’t know I had arthritis but another for the collection ( osteoporosis,diverticulitis, Polymyalgia) -although told I don’t have it anymore! erratic heartbeat, and double vision. Enough to be getting on with. Still don’t understand the jabby pains though. Will look up arthritis! 🙄 Brenda 😀

[DorsetLady PMRGCAuk volunteer]

Hi Jane,

Oh dear, you do seem to have problem upon problem don’t you.🌸

Osteoarthritis or bursitis would be my initial guess....try the usual R.I.C.E. procedures and paracetamol today and see if that helps.

[SheffieldJane in reply to DorsetLady]

I think I just moan more than others. I honestly went into this expecting a full recovery. I am still getting my head round the fact that it ain’t going to happen.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

You will recover from PMR, GCA & LVV - it’s just going to take longer than you hoped. ....and as I’ve said many times recently, the whole situation we find ourselves in this year it’s just not conducive to getting better - no matter what we’ve got.

We’re all mentally fed up, and that doesn’t help us physically...and when, like both of us, we have families in far flung parts of the world we can’t see, it easy to get down.

...or awake at silly o’clock! 😳

[SheffieldJane in reply to DorsetLady]

Thanks for that. I hope you’re right and this does get better one day. Doctors won’t actually be drawn on the prognosis. I always thought it was a matter of time. You’re right, this is a strange time.

[Rimmy in reply to SheffieldJane]

We WILL 'get better' one day Jane - or else I'll ask everybody for my $$$ back .... !!!😜

[SheffieldJane in reply to Rimmy]

You are right. It’s just too easy to lose heart. Our damp, dark cold weather is not helping. I imagine that your heat is better for this. Although I do remember never really being dry ( from perspiration).

[Rimmy in reply to SheffieldJane]

Weather can sure make a difference - and you are entering your Winter in what are very difficult times in the UK. We are more fortunate in OZ I know - sunshine and no community transmission of Covid - so we reallyhave much less to complain about. But the recalcitrance of these bl**dy AI diseases is enough to create MORE stresses anyway - so it can all become 'circular' !! But do fling your thoughts to a not too distant future Jane when we can both say - "well that was a rotten time" -"but look at us now !!" - we MUST get the last larf Jane or what would be the point !? Sorry though you have had so much to deal with - really more than your 'fair share' XXXX🌻

[SheffieldJane in reply to Rimmy]

The last larf is my goal now Rimmy! 😂😂😂

[PMRpro Ambassador in reply to SheffieldJane]

We have had sun, sun and more sun - but they are forecasting a foot of snow here and more at altitude on Saturday! I have to say, watching UK live TV recently has been a real aversion therapy for ever wanting to return to a UK autumn and winter!!

[SheffieldJane in reply to PMRpro]

To be fair, the sun is hanging low in the sky and we get really sparkly sunshine and stunning skys . Your snow will look amazing but it will be a pain to get about.

[PMRpro Ambassador in reply to SheffieldJane]

For a few hours while it is actively snowing - but as soon as it stops all the farmers are out to clear side roads and the snow ploughs do the main roads. While it is snowing almost noone goes out but it is compulsory to have snow tyres on after Nov 15th and anyone who wants to drive in heavy snow carries chains and uses them. It is rare to have the sort of chaos that a couple of inches of snow causes in the UK!

[Joanbill13 in reply to DorsetLady]

You are right there!

[bunnymom in reply to SheffieldJane]

Sorry to hear your struggle Jane. Every thing about PMR is slow and one question after another isn’t it?

[SheffieldJane in reply to bunnymom]

Hello you! I hope you are doing well these days! I am just being a moaner- bad habit. It does drag on though.

[MrsNails]

Morning Jane, sympathies 😔 l have a bit of a dodgy ankle when l first get up, just under the ankle bone, it makes me wince but then it’ll ease off. Last night in bed my left knee, ankle & toes were so painful l didn’t think l’d sleep but it was a foggy, damp, dank day here yesterday, the kind of day l always say ‘gets into my bones!’ it’s the same here again this morning. 😞

Hope it improves for you during the day xx

[YuliK in reply to MrsNails]

Good afternoon Mrs nails

Changes in the weather cause havoc to my poor old bones too..😱

At least you managed to get some sleep 🙏

Keep safe and don’t work too hard. 👍

Yulik. 😷. XX

[MrsNails in reply to YuliK]

Will Do! Message you later xx

[Rosbud]

Good morning Jane , I started with ankle pain in August and still have it , stairs are A nightmare and pushing upwards with my left foot gives me excruciating pain up my calf , GP thinks Achilles tendinitis and to rest as much as possible, painkillers don’t really help , Rheumatologist says fibromyalgia , so I’m stuck till I see him again in January, I do hope you get some relief from all your problems soon x

[PMRpro Ambassador in reply to Rosbud]

I think your GP sounds sensible - do be careful with it as if you were to trip the tendon is very delicate. I was on crutches for months to rest it and had a boot for protection for the first few months, Mine was due to being given a quinolone antibiotic while on methyl prednisolone - each can do it on their own, together the risk is much higher.

[Rosbud in reply to PMRpro]

Thank you so much for this , I’m fed up with it now , OH is beginning to think I’m just A moaner I think , just wish stairs were easier x

[PMRpro Ambassador in reply to Rosbud]

Me too! Beginning of this year I decided it was time to do more walking and get back to previous at least 1/2 hour every day. After 2 or 3 days the achilles reminded me of its existence - and that is 5 or 6 years later! My physio said a few weeks ago that she can still feel the effect on the tendon.

[Rimmy in reply to PMRpro]

Yes the Achilles tendons - I'm convinced mine have been more susceptible to injury since I began taking Pred - unless this problem is intertwined anyway with PMR/GCA. (There is however some research somewhere about changes to tendons being connected with Pred - but can't recall the source). Anyway after a period when I tried awhile ago to walk more I had huge problems leading to terrible nightly leg cramps. When I simmered my exercise efforts down - which weren't very ambitious anyway - everything improved -so I remain cautious on that front still.

[Pollynolongerinagony in reply to Rosbud]

Hello Rosebud, deeply sorry for your pain on the stairs. I was in such excruciating crippling agony with PMR (till diagnosed privately Aug 2019 put on Pred , miraculous cure), I used to cry all the way up the stairs in agony, just thinking about the pain of getting back down the stairs in the morning, nightmare, and the terrible fear of falling too. we were blessed to be in the position to build a garden room, so we can sleep downstairs if necessary, effectively turning our home into a bungalow so we never have to move. (Other option was a stair lift.) I hope you feel better soon, Polly.

[Rosbud in reply to Pollynolongerinagony]

Thank you xx

[MrsNails in reply to Rosbud]

I know this sounds so ‘Very Me’ but l found a higher heeled shoe 👠 helped with my Achilles Tendon, though l did feel very self conscious having Airport Assistance & Black High Heels!

Though l wouldn’t recommend them on the stairs!

[Rosbud in reply to MrsNails]

Thank you , might have to find my heels and give it A try x

[MrsNails in reply to Rosbud]

It shortens the muscle/tendon so it’s not as painful 🙏🏼

[YuliK in reply to MrsNails]

Mrs Nails hi

Unfortunately I have to wear “Granny Shoes”

Gosh high heels bring back memories of the winkle pickers ( probably before your time)

One had to walk sideways on the stairs. 😂because they were so pointed.

Running for the bus in those days, extra high heels. ( all 7 and a half stone ) was so “easy peasy” ...

Can’t see any of us doing it today with our PMR. 😩

Never mind, good to remember those good old days. 😀

YuliK. 😷

🌹🌹🌹🌹🌹

[SheffieldJane in reply to YuliK]

I have bought some Gabor Biker Boots. They are so comfortable and supportive, they give me confidence. Dare I say, they look a bit trendy too, they will not slip on any ice I encounter. I love them with a midi skirt or trousers.

[herdysheep in reply to YuliK]

Wow, winkle pickers! That brings back some memories. First and last time I wore 'proper' heels.

[SheffieldJane]

I do have Psoriasis in my feet. This sounds like it. Thank you. Fancy a couch potato getting a sports injury!It’s the weakness like restless legs in bed at night that feels a bit sinister.

Many thanks for your input everybody!

[Pollynolongerinagony in reply to SheffieldJane]

Hi Jane, sorry to hear you have restless leg symptoms, if it is that, I have a banana a day full of potassium, and drink little glass of Schweppes diet tonic water a day as has quinine, defo helps the restless leg feeling for me, hope this helps, wishing you well, Polly.

[SheffieldJane in reply to Pollynolongerinagony]

My husband made a glorious gluten free banana loaf. I hope that counts!

[Suet3942 in reply to SheffieldJane]

Feel for you Jane. I have pronated ankles so have to wear orthotics. 5 years ago we went on a cruise and I left them at home by mistake. I damaged the achilles tendon in my right foot and it's been playing up ever since. I also get restless leg in the right leg which drives me mad at night.

Hope yr pain improves soon. X

[SheffieldJane in reply to Suet3942]

Hello stranger! I hope it means that you feel ok!I am still at the bits dropping off stage alas.

[Suet3942 in reply to SheffieldJane]

Hi Jane. Yeah i feel ok on 7 mg but drop to 6.5 and I get earache and head pain. Think this is it indefinitely.

[SheffieldJane in reply to Suet3942]

I am similar if I try to get below 10 mgs, in spite of Tocilizumab. My Rheumatologist is leaving me to it. I think I’ve let the side down a bit. I hope your husband is feeling better!

[SheffieldJane]

My feet burn quite badly some nights. I appear to have reached my sell by date. It feels like one of those tennis machines where the balls just keep coming at you and you hit very few.My eyes are always tender. I have just been told by Boots that I can’t have Thealoz Duo eyedrops anymore, on prescription, for dry eyes. They said ask your doctor for something else. My husband didn’t question this. Any suggestions? Or recommendations?

[herdysheep in reply to SheffieldJane]

I used to have Theolox duo, now have Systane on prescription which I think is better.

[5lupins in reply to SheffieldJane]

I have used Clinitas Gel contains 0.2% Carbomer. It is for dry eyes as I wasn’t good with the drops. Used it on and off for years. On prescription. Take care Jen.

[SheffieldJane in reply to 5lupins]

Thanks! I have used those. I find that they smear my glasses and impair my vision a bit though.

[herdysheep in reply to SheffieldJane]

I have almost no smearing with the Systane. Distinct improvement.

[Telian in reply to SheffieldJane]

I have Gel Tears prescribed. They are preservative free. They’re a little thicker than others but you only notice it on administration then it disperses.

[Rugger]

I buy Dry Eye drops from Home Bargains for 99p! They contain one of the ingredients that's in your prescribed drops - Hyaluronic Acid. H B sell various kinds of eye drops so it's important to check the label. I think the problem might be the preservative that's put into eye drops, although mine can be used for 90 days after opening.

[SheffieldJane]

Thanks. Thealoz Duo really suited me. I think it’s preservative free. It’s expensive though.

[SheffieldJane]

You really, because I know you have to take care of your eyes. I have a number of things wrong with mine, including dry eyes.

[York54]

I use Xailin fresh drops , have no preservatives. The eye hospital gave them to me when I had Uveitis. Now have them on prescription from GP.

[SheffieldJane]

That’s helpful! Thanks York54.

[Rimmy]

Yes watch those stairs !!

[Noosat]

Sorry for your pain. I try to dismiss all the unexplained aches and pains and just get on with life. If it were serious, I believe, for me, It would linger for quite a while, then I would be concerned. I do not look for problems, I try to assume I am O.K.

[SheffieldJane]

Very apt and wise words. For me at the mo, easier said than done. X

[merril]

I know I'm very new here and have lots to learn but here's a big hug from me.😀

[SheffieldJane in reply to merril]

Thanks for the hug! I am very old here and still learn something new every day. X

[HeronNS]

A bit late to this thread. I do understand how you have been feeling. I feel like my warranty expired a few years ago! Fortunately in only a few weeks the days will start to get longer again and 2020 will be over and we will gird our loins for a whole new adventure, hopefully with a happy outcome!

[SheffieldJane]

Lovely thought! Our generation almost escaped trouble on our doorstep. Well we will have survived a Pandemic because none of us are going anywhere.