Muscle pain while at 7

[bunnymom]

I am having muscle pain in the back of my legs and buttocks. It's not steroid withdrawal which usually I can improve by stretching. I'm thinking it must be pain due to my adrenal glands not pulling their weight. I am also unmotivated and tired. Anyway ideas on what to do for the pain or will it pass quickly I hope? It's been a week or two. No plans to reduce in my future.

[DorsetLady PMRGCAuk volunteer]

Hi,

I would say the tiredness and lack of motivation could well be adrenal glands, but not so sure about buttocks/legs. Could well be myofascial pain syndrome, or referred pain, or piriformis syndrome. Best to get it checked, you may find physio or massage helps.

[PMRpro Ambassador]

I agree with DL - but why aren't you even considering that 7mg is not QUITE enough to blanket the PMR?

[bunnymom in reply to PMRpro]

I didn't think the pains were in the right places. Calves? I did try 8 for a few days with no relief. What do you suggest?

[PMRpro Ambassador in reply to bunnymom]

It was the buttocks bit I wondered about. OTOH - what about trying gentle specific hamstring stretches? Buttock pain is often piriformis syndrome - which can irritate the sciatic nerve and that can reach down the leg (does for me anyway). I've just had a few days of knives into the low back accompanying a bit of a flare - been sitting with a hot water bottle across it for the last 3 days while at the computer. Got up this morning - cured!!!! Hope it lasts!

But I have to also add - I took my pred well over half an hour earlier last night (Rayos/Lodotra) and that may have caught any extra inflammation before it got established. If you see what I mean...

[bunnymom in reply to PMRpro]

I have been taking 2 before bed and 5 when I get up and that helps some

Didn't last night tho. I'll try some different stretching. I haven't had my wheat bag out this week yet either. Snakes and ladders. Hope your relief continues 🌸

[bunnymom in reply to PMRpro]

I increased from 2 to 3 before bed and woke up feeling physically and mentally better. Plan to stay at 8 for awhile. Thanks for your help. Realized today how coping with the pain was wearing me down.

[Bamber99 in reply to bunnymom]

Before taking Pred my main area of pain was calves. I didn’t have shoulder/ hip pain like most.

[bunnymom in reply to Bamber99]

Well after uping by one my calf pain has eased. Who knows? It's all trial and error plus I just feel better too. I'm staying at this dose for awhile. I get tired of feeling bad. Thanks for your thought. 😊

[PMRCanada]

I don’t have any experience at that level of pred dose, but have read on here somewhere around this level the adrenal glands are nudged awake, as this is about how much they produce normally. During this stage fatigue is common which would explain you feeling unmotivated/tired.

When was the last time you reduced your pred dose? Did these symptoms emerge after that? If they did shortly after the reduction, it could be pred withdrawal. If they appeared days after, it could be a flare.

You could get blood work done (if your markers accurately reflect inflammation levels in your body, some don’t). Does pain relief medication help? I know heat and going in the hot tub provides me with relief.

Others who have more experience and knowledge will be along shortly with information and suggestions. It may be that you need more rest and less activity at this stage.

I hope you find some relief soon. Keep us in the loop.

[SheffieldJane]

Do you feel like a corpse in the morning, hardly able to move yourself, like your battery is completely flat? No pain just stuck mentally and physically. I think this is my deficient Adrenals. I am also finding it difficult to get out of the car and that is pain and lack of flexibility.

Who knew that these diseases had so many last surprises waiting for us?

Commiserations, I don’t know about your symptoms or mine. I am on 6 mgs. 😐

[Sandradsn in reply to SheffieldJane]

Yes a perfect description of me on an off day.. 'I have a flat battery and no pain just stuck mentally and physically '!!!😁Such fun 😃

[bunnymom]

I have pain and stiffness in the morning. I hadnt for a while. I also have strange calf pain. I went up by one today to see if that will help. I am sitting with ice on my back. Earlier I used heat! Who knows!!! I think I am also needing a pain injection for a bulging disc in my neck. Feels like the dragon is waking up. I gave up thinking as the pred got lower it would be better. Commiserations to you dear Jane.

[SheffieldJane]

Me too. Went up by one. Nothing dramatic. Just watched desperate housewives back to back. I am officially a vegetable.

[bunnymom in reply to SheffieldJane]

We hadn't had cable for 20 years and then I got sick. Back came the TV .Too tired to even read with PMR sometimes. I now watch home improvement shows. I have retired and we are doing some budget crunching but the cable can't go!!!

[SheffieldJane in reply to bunnymom]

At least home improvement is useful. 😊

My eyes hurt with reading too much but I’ve always got a book on the go. I have been making Christmas decorations and wrapping presents though. I’ve never been so ahead of myself.

[Rimmy]

I am wondering more and more how hard it is going to be tapering around these lower levels - I am still at 12.5 mg after nearly 2 yrs with PMR then GCA - which I had a 2nd flare of a few months ago. I am more convinced that we habituate to Pred so that each reduction is felt more keenly over time - even before we reach those levels where the adrenals are hopefully 'meant' to 'wake up'. Even 0.5 mg makes a big difference to me now. Also I am realising that Pred might also have been successfully masking good old ordinary 'ageing' aches and pains I might have developed over the last couple of years (anyway). I work physically quite hard some days in our organic orchard - too hard sometimes and inevitably have to spend time recharging my batteries or just can't do it again when I want.

[SheffieldJane in reply to Rimmy]

I think you are absolutely right and there is no dodging it. Mental stress needs pacing too, hence rubbish TV, which you get plenty of 😉 in Aus.

Can I come and sit in your orchard, on a deckchair, with home made lemonade and a fan, and watch you work?

[Rimmy in reply to SheffieldJane]

Any time SJ - and my OH says she will also give you a nice slice of her vegan peach, almond and walnut cake ... howzat !!??

X

[SheffieldJane in reply to Rimmy]

Just perfect thanks! 🤗

[bunnymom in reply to Rimmy]

Make that two as long as I only have to watch.

[bunnymom in reply to Rimmy]

At the beginning I thought lower dose were the answer but now agree with you. It becomes very hard to sort what is what. I increased overnight and will hopefully land at 8 for awhile. I was getting worn down dealing with the pain which I realize this morning.

[piglette in reply to Rimmy]

Interestingly enough I found 15mg to 10mg harder than 10mg to 6mg. Maybe just me of course!

[Rimmy in reply to piglette]

This could also have been about the disease activity as well - something which is 'different' or varies in all of us don't you think ?

[piglette in reply to Rimmy]

I suppose that is possible too.

[PMRpro Ambassador in reply to Rimmy]

And I'm sure is higher in the first 6-12 months - the point at which most of us are trying that first 5mgs reductions...

[Hellyowl]

I have GCA not PMR but I am determined to stick at 5mg for 6 months with a view to going lower after. I wake up to exhaustion and legs, hips and arm pain. If I have had a busy day the day before I really struggle to get up. By 3p.m. I could run a marathon, like a lightbulb coming on. Currently trying 1mg at bedtime and 4mg in the morning, but it is not making any difference. I am sure it is withdrawal, anything below 7mg does this to me. I don't think my adrenal function is working. I am getting this checked if and when I get to 4mg. I cope by telling myself I know I will be fine later in the day and I go to Pilates (evening classes when I am pain free) and I find that that is a great help. Other than that I am determined to get off steroids and just carry on. A bit of TLC in the morning from my OH helps a lot, tea and two paracetamol in bed half an hour before getting up.

[Suet3942 in reply to Hellyowl]

Hi, if you have hip, legs and arm pain, are you sure you haven’t got undiagnosed pmr?. Just saying.

[Hellyowl in reply to Suet3942]

Hi,

I asked Rheumy and he says no it would be much worse if it was PMR, but as I am already on steroids I am not so sure. But treatment would be pretty much the same so as with these illnesses, who knows? Time will tell.

[PMRpro Ambassador in reply to Hellyowl]

PMR comes in all sizes - I lived with it for 5 years, no fun but doable...