Feeling paralysed with body pain on waking up

My husband was diagnosed with Polymyalgia Rheumatica over 2 yrs ago and was put on 20mg of Steroids daily and then told to reduce them by 1mg every few weeks. The pains immediately reduced, but the trouble is every time he goes below 5mg all the pains come back. He has never had a follow up from our surgery. After contacting the surgery he was told to go back up to 10mg a day and he has now been given a follow up appointment at beginning of August. We are hoping he will then be given an appointment to see a Rheumatologist. Very poor service from our Drs surgery.

Mt61

I am the same, maybe not quite as bad as you. I feel like my bottom half doesn’t belong to the rest of my body!
I was put on a statins six months ago, so don’t know if that’s adding to the problem. It’s took me half hour of stretching, to get going. Now I am sat in a hot bath, soaking my joints.
Maybe you should see the doctor.
I have a scan book for next week to see what is going on with my legs.

I am also on statins and have stiff painful joints and back ache at night, as well as difficulty getting up stairs some days. I had an Xray, a bone scan and a check for arthritis markers, all clear except for some bone thinning. A hot bath helps during the day, but I find that the only thing that works to some extent at night is ibuprofen.
I do think statins have affected me, but I'd rather take my medication and be alive with aches and pains than be dead without them! I'd be interested to hear what they tell you after your scan.

So move away from the person offending you Mt61 or ask the person on the desk to speak to him and why the need to say it was full of non white people, horrid thing to say
And I don’t think much of your post either Colliemum it’s not wokery if there is such a word to not expect racist remarks

colliemum

Apologies, it wasn't the OP who posted about the demographic in A&E, I was actually supporting Mt61's comment.

Thank you Colliemum 🙏

BlueBelle

So move away from the person offending you Mt61 or ask the person on the desk to speak to him and why the need to say it was full of non white people, horrid thing to say
And I don’t think much of your post either Colliemum it’s not wokery if there is such a word to not expect racist remarks

I told the security guy on my way out, who just shrugged his shoulders. As for moving, it was packed so no other seats to move to. I am not a racist.
If it had been a room full of white men I would have been off if any one of them had gobbed up phlegm. Obviously you aren’t that particular by sounds of it.

Rubyava

I was going to suggest the same.I have had PMR for the last 6 years....I think Im on top of it. Pain is usually bilateral in arms and pelvis especially in the mornings.
Worth mentioning to GP .Only way to diagnose is with a trial of steroid. I was suddenly pain free after 6 hours...after my first dose.
Then after a staring dose (25mgmfor me ) one has to wean off the steroids very slowly. Im down to 2.5 at the moment.
Good luck'

It is incorrect to say that is the way to diagnose it, it is the way to treat it, but diagnosis is done through a full blood test, where it shows a marker of the inflammation. Some show really well, others not so well, but no doctor will treat without the markers I am told. I had PMR for 8 years, so know about it well and had to be weaned off the Steroids by the hospital as the GP was doing it far too fast. I still suffer with the pain terribly and like BEA wake up in the morning terribly stiff and in severe pain but I would not describe my situation as feeling paralysed, I take my morning medication upon waking i.e. 2x 30/500 Sulphadeine and a slow release Morphine capsule, then roll on on to the floor on my yoga mat and warm my body up by doing various stretching exercised for 30 minutes. After that I can go in the bathroom. I am however in constant pain and just live on pain killers. I have been referred to the pain management clinic for the 3rd time, this time a more holistic one apparently. We will see I will try anything. In your case I would speak with 111, they will get a doctor's appointment for you without doubt. It is totally wrong to wait.

Bea65

Do any other GNs experience this...am used to having paralysis in hands and knee throbbings/stinging on a daily basis but this is something different which i haven't experienced before.

I awake and know immediately i cannot move as feel paralysed all down body and ache so much...I at least know am alive!!

Had right side THR in march and now my ?widespread OA seems to be affecting my whole body...is this normal?? Its soo scary...

Honestly, my whole body seems to be angry...am i Weird?
Takes so much longer to be able to get out of bed and function

It is appalling follow up and by experience far to quick a reduction, some times you can only cut half a tablet down and then leave it months before you can cut another half. The slower you go the better you cope with the lower dosage. The hospital did it with me eventually rather than the GP, they were brilliant, saw them every months for a few years.

Might be worth calling 111 for advice OP. I'd also wonder if it's stations causing the stiffness, possibly try a different type. Hope you feel better soon x

Thank u all for responding .. have got face to face now on 22nd … not as soon as would have liked but at least it’s before the GPs are considering strike action on the 25th😳 heard this on news today
Maybe I’ll ring 111 but with heat am very lethargic

That's still over a week away.

Maybe you should change your GP, although I know this isn't always possible.

Ringing 111 is sometimes a way to get a quicker appointment.

Bea65

[keepingquiet] there's a stampede on the phone lines @08:30 like most surgeries in my area... there is no same day service - where do you live...must move there!

[Liloldlady] ive thought this PMR.but need it confirmed..will update

[Mt61] its awful isn't it- mine is all over and cannot understand how intense the paralysis is...yes I do get my joints moving but I have to brain plan it....

[teabagwoman] hope you're feeling better .... the physio to my THR on right side has set me back with the long lasting groin pain which moves up into right abdominal wall...really need GP opinion but its an ongoing challenge to get appts...

I would honestly say change your gp....I live in a nw market town ....3 of our local gp practices ( mine included) only offer same day appointments ....routine, urgent, whatever .......as long as you phone in the first half hour you get an appointment....you don't have to hold, you are given the option to get a call back.

Afraid I live in a very built up town and not simple to change to different surgeries…the one I have is a joint practice and getting to either is close to my address..that’s probably why I am reluctant to change….

Bea65

Afraid I live in a very built up town and not simple to change to different surgeries…the one I have is a joint practice and getting to either is close to my address..that’s probably why I am reluctant to change….

I have been put back on volterol suppositories which seem to help, but these can affect the heart & kidneys.

Mt61 yes there’s always something to help us and potentially harm us re volterol suppositories…I’ve never been prescribed them and not sure I could do insertions now ..poor mobility🤔

MT61, I know that these waiting rooms can be very uncomfortable. Please remember next time that foreign looking men can actually help you if you ask, and then you wont feel so isolated

MT61, Spitting on the floor may have been a sign the man was unfamiliar with our culture.

It is often regarded as more hygienic to spit on the floor than to swallow sputum or spit it into a hanky and them put hanky in pocket.

the only white woman - how racist !
What was the colour of the Doctor you eventually saw ? Just asking……

crazyH not "racist". That was over the top crazyH.

Some people are not accustomed to being surrounded by people who look different from themselves.

Bea65, I think I'd be complaining to my MP, if my GP lacked a call back facility like LouisaA describes

Diet and Nutrition
Evidence:

Anti-inflammatory diets (rich in omega-3s, fruits, vegetables, whole grains, and low in processed foods) may help reduce overall inflammation.

Some people with PMR report feeling better when avoiding gluten, dairy, or nightshades, though this is anecdotal.

Vitamin D deficiency is sometimes associated with musculoskeletal symptoms, and supplementation may be considered.

from ChatGPT

NB don't overdose on VitaminD

Caleo

MT61, Spitting on the floor may have been a sign the man was unfamiliar with our culture.

It is often regarded as more hygienic to spit on the floor than to swallow sputum or spit it into a hanky and them put hanky in pocket.

Oh that’s ok then Caleo, spitting on a hospital floor- I realise then he was probably offended at my wearing of shorts & the phlegm was aimed at my feet. Not good.

Caleo

crazyH not "racist". That was over the top crazyH.

Some people are not accustomed to being surrounded by people who look different from themselves.

I felt vulnerable because a was wearing shorts, albeit long knee length & sandals
CrazyH. I didn’t see any Dr because he spat at my foot, so I left the hospital.

Mt61, It's normal to feel vulnerable when finding oneself dressed very differently from the people all around.

It's normal to feel vulnerable when one finds oneself too close to another who has what one considers dirty habits.

I was only suggesting to you how you might manage those situations without harming yourself. For instance if only you had known there were going to be all those foreign men you could have dressed even more modestly in self defence.

" realise then he was probably offended at my wearing of shorts & the phlegm was aimed at my feet."

ah now I see where you are coming from Your intuition was probably right if he spat at your feet.

A similar thing happened to me concerning a brown skinned schoolboy looked 'Asian' who spat immediately in front of my feet as I exited my drive with my dog. I was so offended I crossed the road rather than pass close to him.