Odd shaky feeling in my legs

[Sillydogsmum]

Hi, on day 6 post diagnosis PMR, on 20mgs Pred and really feeling a lot better apart from occasional shoulder pains. However I do seem to have a peculiar lower leg shakiness as if I was just recovering from a bout of flu. Is this just to be expected and would getting back to excercise early be a good idea? Thanks for any enlightenment.

[SnazzyD]

Pred can make you feel shakey, weak, tired but buzzing with a false energy, a funny head and uncoordinated amongst other things. In some this can reach a peak about 2 hours after taking it. As for exercise, do gentle only which usually means light walking. If you were previously active, it can be very frustrating but one reason is that PMR and Pred can make you prone to injury. The other main reason is the Pred is only protecting you from the inflammation, it isn’t a cure for the PMR which has to be allowed time to burn itself out. Do not be tempted to rejoice in the pain relief by getting jobs done, going out, exercising normally etc. Rest is king.

I suggest you immediately start a low carbohydrate, low salt diet now to avoid Pred induced high blood sugars, weight gain and fluid retention. Normal healthy eating measures usually don’t help because of the way Pred affects one’s metabolism.

You’ll get other replies so sit tight!

[Sillydogsmum in reply to SnazzyD]

Thanks.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

SnazzyD has given good advice - can I suggest you have a look at these links -one on general info, one on exercising (and take that gently) -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Sillydogsmum in reply to DorsetLady]

Thanks a lot. Do you have any similar info on PMR and glaucoma. I have glaucoma and my eye pressures have been a bit elevated this year and I would like to have info for when I see my opthalmo in September; esp since steroid treatment may be long term. Cheers.

[PMRpro Ambassador in reply to Sillydogsmum]

I assume you are in the UK? If so, I would try the MECS service to get pressures checked more often if you can't get an emergency appointment with the ophthalmologist. My pressures haven't budged, it doesn't happen to everyone but if you already have raised pressures it might do.

Please could you add a bit to your bio - it makes such a difference in offering relevant advice as this is an international forum and things are different from country to country

[Sillydogsmum in reply to PMRpro]

Thanks, will do.

[Sillydogsmum in reply to PMRpro]

I'm on 3 months checks , so probably OK to wait till next one. Pressure in normal range at last check, after med alteration.

[PMRpro Ambassador in reply to Sillydogsmum]

You may well need even stronger meds. But there are now ops that can be employed when the drops no longer work.

[Sillydogsmum in reply to PMRpro]

👍

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

It’s not so much the PMR and glaucoma -it’s more that Pred can raise the pressure levels.

I had GCA so on high doses -and my levels did go up at first -fortunately not enough to need medication but enough for eye department to monitor for a few months. They did return to normal as I reduced Pred

PMRpro has suggested MECS….

And maybe have a look at Eye conditions in the FAQs - see this -

healthunlocked.com/pmrgcauk...

[Sillydogsmum in reply to DorsetLady]

Thanks, I'm on 3monthly checks, and the last one was 6 weeks ago so I'll wait and see. Can one reply to more than at once on the forum?

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

Forum is not particularly user friendly in that way.... the only way is to answer yourself - but unless people have saved your post [PMRpro and I do every one, but most don't] they will not be notified that you have replied. However if you reply to an individual they will be notified [so long as they have indicated so in their email preferences]...

Obviously somebody reading your post for first time will see all replies up to time of reading it....

..hope that's clear 😼

[Sillydogsmum in reply to DorsetLady]

So can I assume that if I reply to you or PMRPro the other will see it?

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

Only if they have saved your post... or are new to it and reading for the first time....

[Sillydogsmum in reply to DorsetLady]

🙏

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

Sorry should have clarified that a bit better, anybody can read any post and all the replies, but will not necessarily receive a notification of the replies - unless they have Saved the post or you are replying directly to them…as you just have to me.. obviously got my weekend head on ! 🥹

[Sillydogsmum in reply to DorsetLady]

Yo, what i havent mentioned is that i had a dental abcess drilled out today(Thank-you Lord!) Would it be reasonable to assume that two inflammatory processes simultaneuosly, plus the assoc polypharma antibiotics etc make the pmr symptoms worse? Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

Certainly likely to make you feel worse in general, and probably doesn’t do a lot for your PMR either, although how much it affects it, I wouldn’t like to guess 🤨..

[PMRpro Ambassador in reply to Sillydogsmum]

It could - but some people find when the immune system has something else to think about or they are on antibiotics they improve!!! There is no hard and fast rule.

[PMRpro Ambassador in reply to Sillydogsmum]

If you reply to anyone DL or I are likely to see it! Unless it is in the middle of a conversation thread within a thread and sometime HU sees fit NOT to tell us.

[PMRpro Ambassador in reply to DorsetLady]

Er - that is an assumption that I suspect isn't the case judging by how often someone says the same thing as a post 2 up!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

As we know, some read the question, but not the replies…🤔

[PMRpro Ambassador in reply to DorsetLady]

Sometimes not even that

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

true….

[SheffieldJane]

That low level flu feeling stayed with me alongside pain with PMR then GCA/LVV. I imagined that it was the autoimmune condition itself. It was especially apparent when I had overdone things, was tired or beginning a taper. I took it as a reminder to look after myself.

[RoomsonFire in reply to SheffieldJane]

hello dear 🙏 I’m 2 years now with PMR and I still feel like I have a Fever and Achey , Sweating at the slightest exertion , I’ ve reduced Pred to 3 mg daily as on weekly Methotrexate inj. My Face wet and shiny is embarrassing ! Is this common to everyone do you think - ? Best wishes - Michelle

[PMRpro Ambassador in reply to RoomsonFire]

Not everyone - but many experience it,

[SheffieldJane in reply to RoomsonFire]

My early days were a bit like that . A few years on it’s just an achey feeling at times. X

Who am I kidding, I remember being at a baby group with my grandson, dripping on his little head. The wheels on the bus did it.

[RoomsonFire in reply to SheffieldJane]

It’s an odd pain type for me , Sometimes I feel like a Christmas Tree 😂 With those flickering alternating pattern lights ! Waves of achey spasms - then Cramps and Twinges ! Weakness and Stiffness , No Go movements too - Face ache … Bored with its Various Display now ! 🥰 Appreciate others here also weirdly Blighted ! ❤️

[SheffieldJane in reply to RoomsonFire]

Very good description! My kingdom for the off switch. 🙂

[RoomsonFire in reply to SheffieldJane]

Yes ! Sometimes I think this is too weird 😂 Thanks for your Validation Jane 🙏

[PMRpro Ambassador]

"would getting back to excercise early be a good idea"

Depends what you mean by that. Going for gentle short walks probably - but NOT the gym or anything too energetic. There is a cautionary tale in a recent thread:

healthunlocked.com/pmrgcauk...

Snazzy has said pretty much all I would say so I won't write it again but I will underline it.

[piglette]

If you enjoy gardening you could always join our PMR GCA Gardening group. facebook.com/groups/6288051...

[Sillydogsmum in reply to piglette]

Thank-you so much but I'm in 🇫🇷 and have more than enough garden to do! I have worked out that the feeling that my feet don't belong to me seems be there for 4 hrs after the mornkng pred dose, so i might play with splitting it in two a bit if it doesn't settle itself.B

[Paulagcl]

I am having that shaky leg feeling, too. I'm guessing related to the PMR since I didn't have it before.

[Sillydogsmum in reply to Paulagcl]

Im not sure if its the steroids or the PMR itself. Sorry to read you are frightened; I feel a bit shell-shocked about the diagnosis myself. However it seems that treatment does make a big improvement and that the thing burns itself out, each person reacting differently. Chin up !

[Gimme]

I have the wobbly jelly leg feeling too. Good advice already on not overdoing it, so I won't repeat. Fatigue has been the limiting factor for me, when wanting to exercise. The fatigue has left me reluctant to leave the house even. I still find walking far too painful and tiring. But you don't have to do much to keep you moving. Little and often. I have found that I can still swim and I always feel much better as soon as I get into the pool. You could try swimming, if you have access to a pool and your arms don't hurt too much. If not, walking up and down the pool can be good gentle exercise. I have found that it makes me much more tired than it used to, so don't be surprised if you need to factor in more rest time or need to do less than you used to. Your body will tell you if you are overdoing it.

[Sillydogsmum in reply to Gimme]

Many thanks for that advice.

[redruth123]

Hi Sillydogsmum, I had jelly legs in the early days of Pred and others on this forum have reported it too. It was very distressing at the time, esp as my rheumatologist at the time said he had never heard of this problem. Fortunately it lifted eventually. It's been over 2 years ago now so I can remember how long it took.

[Body_bonkers]

I experience jelly legs too and whilst it has got better, it is pribably because the fatigue is limiting my activity !