Finding out my pain are in muscles not joints??

[Rocketronzy]

Now im tappering down my pains are in the muscles and lasting 😬 Calves and thighs at the moment. Tingling toes. And all doc is bothered about.

Getting me off pred. 😲😢

[yourpharmacist]

I had all of those symptoms and thought it was my gca and it was the "withdrawal" from tapering down prednisone.

I started magnesium tablets, increased vit d, and sl vitamin b12. That seemed to help but it was very upsetting and my doctors did not seem to concerned either.

[Rocketronzy in reply to yourpharmacist]

Fine this morning 👍It's a mine feild. But sometimes wonder if we know too much. 🤔

All the best thanks. 🌹

[Nap1 in reply to Rocketronzy]

No such thing as knowing too much. What is unfortunate is that we know more than our doctors do in some cases. Knowledge is power which gives you the power to take control of your own situation. Sometimes that means to just walk away from a person treating you and look for someone who will work with you. I have done that about nine times and I hope I am now settled.

[Rocketronzy in reply to Nap1]

You're dead right. At one time doctor could get away with owt as we new nowt much.

But now when we have a problem we read and read. Ve. Va la the net. 👍👍👍😤

🌹

[yourpharmacist in reply to Nap1]

Having the confidence in yourself is a major part of the recovery or getting to remission with these syndromes and to stand up to healthcare providers when you know their advice or conclusions are incorrect.Arming ourself with as much knowledge as possible. You know your body best and one size does not fit all. Listening is the most important characteristic that a good healthcare provider can have. If they don't listen to you , it is time to move on, and keep learning.

[Nap1 in reply to yourpharmacist]

Yes and eventually you find the right doctor for you. It is an aggressive pursuit.

[Rocketronzy in reply to Nap1]

That's true. At one time they could fob us off with anything. But it is frustrating 😳😒😲

But it's them that dolls out the pred. Etc. 😢

[Rose54]

Hi Rocketronzy

Tingling in arms and legs is a well known side effect of preds

How fast or slow are you tapering what's right for one may not be right for another

You also have to do your part so are you trying to do too much

[Rocketronzy in reply to Rose54]

Thanks rose it's all good to know. IDo do a lot of exercise. I'm a lot fitter now than when I retired 13 yr ago.

It's the Owls that dose it for me👍👍

🌹.

[Hidden in reply to Rocketronzy]

Owls?

[Rose54 in reply to Rocketronzy]

Just be carful PMR makes are muscles intolerant to exercise so you may be doing far to much.

Are the pains worse next day if so its a warning you need to take it easier

[Rocketronzy in reply to Rose54]

Mm sounds good sence but can't help myself when it comes to badminton.But I will monitor it.

Thx. 🌹

I am beginning to think I have been suffering with 😩 Forgot the name. I'll fine it text you back.

[Rocketronzy in reply to Rocketronzy]

Fibromyalgia seames to fit my problems.

[Rose54 in reply to Rocketronzy]

Hi

Their are some that have both Firbo and PMR

reading you have been on preds for 6 years and now on 15 if im reading correct .

Have you been below that in those six years and was it all for PMR

[Rocketronzy in reply to Rose54]

You know I wish I had kept a record I have definitely been rushed down to 5. Then ended up in A&E with chest pains. Where the Doctor there put it down to a flare.

But the look on the Rumis face when I told him. As if to say stupid man.

😳 it's amazing how they all have there own ideas 😲😳

And now today when to doctor for some ones. No chance. They seam to treat me like a drugy 😬

She said. When you get down t to 5'0,5,0,5,0 for two weeks we We will assess you.

We'll see 😲 I'll let you know.

[Rose54 in reply to Rocketronzy]

The rule is reduce by no more then 10%

you do need ones most of us do .5 reduction never had problems getting ones have whole big tub of them.

Lets hope its not Fibo unfortunately that's for life PMR will someday burn out

[Hidden in reply to Rose54]

Hi ronzy

I was diagnosed with fibro/chronic pain (my gp doesn't believe it in but pain clinic diagnosed). I have taken tramadol for years. Sometimes works but other times doesn't. My body tells my brain I am in pain even when there is no reason.

The best thing I found for thigh muscles was capsaicin cream which I did originally get on prescription ...its lasts ages for me. Amitrypiline also part of protocol of treatment these days.

[Rocketronzy in reply to Hidden]

Yes I found Amitrypoline fine.

Helps a lot. I was blaming fuzzy head on it but now thinking it's more probable it's the pred. 🤔

What do you think?

It was Amitryp. That cured my

Intertesrieal systitus finally.

Think I'll use painkillers mor.

I am good with tramadoll. But once again they don't like given it.

A t b. 🌹

[Hidden in reply to Rocketronzy]

I Ha vent noticed any fuzziness with amitrypiline and been on it for well over 10 years.

I take slow release tramadol but ideally would like a mixture of both. BEfore the regs came in a few years ago I was on enough to lead some kind of normal.life but since the reduction I do find it hard to manage to control pain for say 16hours across day. But more tramadol not option so manage it with occasional co codamol for breakthrough pain.

PMR has complicated issue and downside of pred is not being able to use the prescription strength gels.

hey ho I suppose a few people that abuse the drugs spoil it and I suppose they have to have limits to ensure we don't take pills Willy nilly.

[Rocketronzy in reply to Hidden]

It certainly helps me sleep also😜But it did take me a while to get used to it. Amitryp I am talking about. A few of my badminton chums takes e it for pain relief from arthritis.we are not super fit because we play badminton

We all have our problems the best players Barry has a bad heart 😱But is amazingly fast. I could go on all day about them. But we just keep going and laughing and having fun. OWLS.

[Rocketronzy in reply to Hidden]

What dose do you take. Please.

[Hidden in reply to Rocketronzy]

40mg at moment. increased since pmr.

Having a good laugh with friends is absolutely vital. Couldn't cope without a daily dose of feel good hormones

[Rocketronzy in reply to Hidden]

👍👍I felt dreadful this morning 5.am. GCA like symptoms. Olso and in lots more places. 3 hr it took t get something lik 😬 Off to sports centre now must try and keep Fit.

🌹let's keep battling.

[Rocketronzy in reply to Hidden]

Kills pain cocodemol but walls me up

That's one I Darent take

Ron 🌹

[Rocketronzy in reply to Hidden]

Yes I think amitrypolin is good no problem gettin them working wonders for my bladder.

[Rocketronzy in reply to Rose54]

Big tub😜😱🌹🍀

[jlyndauk2002]

Hi Ronzy I am having the same symptoms as you and struggling to get below 10mg. I am tapering from 9.5 to 9 using the slow method from PMRPRO but like you I dont get much sympathy from the medics!!! I am also having sleeping probs, tingling and restless legs!! The rhumy wants me down to 5mgs by nov!! Ha she will be lucky. Might try the magnesium. Good luck.

[Rocketronzy in reply to jlyndauk2002]

Gosh I hope I am lucky. 😳My doc wants me off in 6 weeks from 15 mg. he things it will be a breez because Rumi says I haven't got PMRA but I have been on pred for at least 6yrs. 😱

All the best 🌹

Thx.

[piglette in reply to Rocketronzy]

Hi Ronzy, your doc is putting your health in danger if he really believes you can go from 15mg to 0mg in six weeks when you have been taking pred for six years. I am quite horrified that he has so little knowledge of steroids. He really should be made aware of what his suggestions could do to you.

[Nap1]

Yes that is very true they just want to get you off prednisone. Mine went a little too fast and I had a violent relapse and then back up again anyway so you need to take matters into your hands and not cause yourself. I did find another rheumatologist who is not looking to "just get me on prednisones quote.

[Rocketronzy in reply to Nap1]

Yes all they think of is the pos. side effects (I have had no bad one yes I am lucky. )

Today tried to find out the density of my bones was a word meaning brittle. 🙄. I think everyone at my age has brittle bones.

It's battle. 😤

All the best with yours. 🌹