Burning tingling and numbness in head, wrists and legs/ankles feet + problem with bed

[Almostaweed]

Help! Feeling a bit beaten today. One of those days when you feel you will never be well again and you can't stand this fire in your body. Burning, tingling numbness all over but mainly in head wrists and ankles. I started on 15 mg Pred on Christmas Day 2023. Am now down to 4mg up from 3.5 as I felt symptoms were coming back. I can't work out whether the tingling is due to too much cortisol in my body or the PMR coming back.

At the same time I have a problem with my bed. I have been waking up lately with my left leg numb and aching pelvis which lasts through the day. I think this may be a combination of terrible circulation caused by Pred and the fact my bed may dip too much. Does anyone have any advice on a good bed I could get from John Lewis that would be supportive but gentle? I have been struggling with this bed problem for two years now. I feel so ashamed of even having the problem as it seems to be unusual. I don't dare mention beds to my friends any more as I bought an expensive one which had an absolutely terrifying effect on my body - and I had to get rid of it. I then bought a cheap mattress which only worked on the floor and was not comfortable. And now my newish expensive bed is turning on me! Is anyone else having terrible bed problems? Please say you are!

[DorsetLady PMRGCAuk volunteer]

I’m guessing it isn’t the bed itself..it’s the mattress … there are many online and at the moment on offer..plus most [but not all companies] will take old one away.

But have to say what mattress suits me or anyone else may not be the right one for you .

Think you also need medical advice on the burning/tingling sensation.

[Almostaweed in reply to DorsetLady]

Thanks Dorset Lady. Yes, I am beginning to think I might need to see the GP about the burning/tingling, but will try tinkering with the things I can change for a bit longer. Actually once I started on my day today I found I could fulfil my obligations and became happier. I think perhaps just expressing how I felt this morning took some of the pressure off me. So thank you very much for listening.

[DorsetLady PMRGCAuk volunteer in reply to Almostaweed]

No problem-why we are here - to listen as much as to advise..

[Almostaweed in reply to DorsetLady]

It's very kind and very patient of you.

[Countrykitten in reply to Almostaweed]

I've blamed my mattress in the past because it feels as if it's stuffed with rocks, then realised that it's not the mattress, it's my stupid body, because, on the occasions that I'm feeling a bit better, my mattress feels comfortable. The 'rocks' are in my joints! Good luck finding a comfortable one that suits you. It's awful when we're so tired we just want to go to bed but dread it because we know it's going to make pain worse.

[Almostaweed in reply to Countrykitten]

Thanks for saying this because I have been wondering the same thing. One of my friends thought the problem was with me and not with the mattress. And I did wonder if I was blaming the bed for my body! I now think it is a bit of both.

[August7]

Sounds horrible and not sleeping properly due to the mattress isn’t helpful. I know what you mean about sourcing the right bed/ mattress. A year ago I had to replace mine and did something similar by ordering a very good brand… too firm, another one…..too soft ( yes Goldilocks😳), I ended up after a friends suggestion, (without much hope I must say) getting an Emma mattress online. It has been great, although Dorset Lady is spot on it might not be for you. Anyway just a suggestion. I hope you feel better very very soon.

[Almostaweed in reply to August7]

Ah someone who understands! Thank you so much for telling me about your experience August7 and how you solved the problem. I think we are allowed to get it wrong more than once. My next choice will be my fourth in the last 2 years. Embarrasing! I think I may have got into a mess from having had a soft bed for years and years and now I actually need a slightly firmer one. I'm just going to have to take the plunge as you did.

[Almostaweed in reply to August7]

By the way, August7, did you put the Emma mattress on a slatted base or a sprung base?

[August7 in reply to Almostaweed]

It is a divan base but with a firm wooden structure. Hope that helps😉

[Almostaweed in reply to August7]

Thanks August7

[diana1998 in reply to August7]

I tried an Emma mattress after a recommendation but didn't like the sponginess of it. Sent it back after 24 hours and luckily had kept my expensive old one. Many get on with Emma but definitely not for everyone.

[Menno1525 in reply to diana1998]

Would also warn that Emma as a company have had some significant issues lately that have led to Which magazine withdrawing their best buy status. I had constant delivery issues with them and ended up cancelling my order and having to be very persistent to get a refund. Now have a Simba hybrid mattress which is sprung but has a memory foam top layer and suits me. IKEA do cheaper ones of a similar kind which are very good and score well in the Which tests.

[diana1998 in reply to Menno1525]

2 intimidating blokes delivered ours when I was home alone. Felt very relieved when they finally left.

[Almostaweed in reply to diana1998]

Yikes, scary.

[Almostaweed in reply to Menno1525]

Thanks so much Menno. It makes sense to me to have a top layer which is softer while the lower part does the supporting.

[Almostaweed in reply to diana1998]

Thanks Diana. Strangely enough the sponginess might suit me.

[PMRpro Ambassador]

I doubt the tingling is too much cortisol - but it does need to be reported to your doctor and assessed. Being all over it also doesn't sound like typical neuropathy but there is a condition that is all over - full body neuropathy.

A newish bed and mattress shouldn't "dip" unless there is something wrong with it and that isn't impossible. Have you still got the mattress that worked on the floor? That suggests to me that maybe you need a harder base - so maybe you could get someone to make a base of plywood to lay on the top of the base you have? My bed has wooden slats to support the mattress and I have a foam mattress on top - it is probably hard for most people but suits me and that firm base means the mattress doesn't sag. And it is a lot cheaper to try out than a new bed!!

[Almostaweed in reply to PMRpro]

Thanks so much for responding PMR Pro and for suggesting I talk to my GP about the tingling. I think I will if it carries on like this. Full body neuropathy sounds horrific. I hope I haven't got it. It could just be the PMR coming back as that is 'pain all over' and I may be experiencing the pain as tingling. Thanks for the suggestion about putting my existing mattress on a firm base. I could try it on the floor as a first step if I feel brave enough! I'm not going to solve this without being brave.

[PMRpro Ambassador in reply to Almostaweed]

If I tried that I'd never get up from it!!!! Good luck!

[Almostaweed in reply to PMRpro]

Wow. I should be more grateful that I can.

[GerriMc]

So sorry you’re going through this. I understand the mattress issue. I too used to wake with a pain in my hip. I got a new mattress which was quite firm but found it a bit too unforgiving. The solution for me was the addition of a mattress topper. It was soft enough to provide enough give while the mattress underneath still provided support. Another thing that helped me was using a little cushion between my thighs. It helped keep my hips in line. This is difficult to get used to but it definitely helps.

I think the burning sensation is due to the pred. I have peripheral neuropathy which started when I was on 20 mg . I’m now down to 2 after about 6 years, still have it but it’s not too bad. Not sure if any of this helps but it might. Hope you get some relief soon.

[Almostaweed in reply to GerriMc]

Yes it does help thank you so much. I also think it might be the Pred (if it isn't the PMR). I am going to try and reduce the dose again, very very gradually, ie 4mg down to 3.75mg for a while. And after reading your post and others have moved my mattress to the floor (and made up the spare bed for emergencies!)

[Sirtomas in reply to GerriMc]

Hi GerriMc, I see you write about having a cushion between your legs. I also.use one every night. Mine is specially designed and bought from a disability catalogue. I wouldn't be without it . Like you say it takes time to get used to it but now I can't get comfortable unless it's there whichever way I lie.

[GerriMc in reply to Sirtomas]

Ah yes, I eventually got one of those too. It’s great!

[PMRpro Ambassador in reply to GerriMc]

How do you keep it in place? Don't you move about in bed?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Some have a strap to go around one leg to keep in place -

knee cushion

[PMRpro Ambassador in reply to DorsetLady]

I have one - but it is smaller and thicker - very uncomfortable! I tried a pillow - ended up on the floor!! I'm too restless I suppose.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I tried a smaller ones long time ago.. not good.

[PMRpro Ambassador in reply to DorsetLady]

Felt like a brick!!!!!

[GerriMc in reply to PMRpro]

There’s a strap like Dorset Lady has shown. It can take a bit of getting used to. At first, I just used a pillow and that works too.

[DorsetLady PMRGCAuk volunteer in reply to GerriMc]

I just use pillow...

[GerriMc in reply to DorsetLady]

I still do at times. Whatever is most comfortable and keeps your hips aligned.

[Sirtomas]

I bought a rising/recliner bed, best thing I ever invested in. Now I can sit up as in an armchair, lie flat to sleep and all situations in-between. So I watched any TV that's interesting, lie back down to get comfortable and sleep. When I wake in the night to go to the bathroom I soon settle back and fall asleep again, heaven is definitely in a riser/recliner bed.

[Almostaweed in reply to Sirtomas]

Sounds really good. I do envy you. But I would not dare commit myself to such a thing in case it didn't work (like every other bed).

[Odosmum]

I have a problem with beds in that I find nearly all mattresses (especially expensive ones) too hard and soft ones unsupportive. I have found the solution in the form of a Duvalay mattress topper. I bought one initially for my caravan bed and was so taken with it that I bought one for my bed. This has sorted my issues.

With regard to the tingling / I have experienced burning and tingling in my feet and legs, usually in bed, for some years now. The doctor diagnosed nerve damage from diabetes and the DMARDs I have taken for many years. Pregabalin helps me, but also, not letting me feet get too warm. I am the one who, in the middle of winter, has a hot water bottle (never an electric blanket because I can't deal with heat in my legs) and my feet sticking out of the duvet.

[Almostaweed in reply to Odosmum]

Thank you Odosmum. It's very comforting to know that someone else has a problem with beds as I do. I will look up Duvalay mattress topper. How amazing that it has sorted the bed problem for you. I think my metabolism is a bit different from yours because I heap blankets over my feet to keep them warm and my sense of tinging is mostly during the day.

[PMRpro Ambassador in reply to Almostaweed]

We used to suggest a thick synthetic duvet as a cheaper alternative to a mattress topper to make a slightly too hard mattress more comfortable - making a duvet sandwich we called it!!

[PMRpro Ambassador in reply to Odosmum]

" I am the one who, in the middle of winter, has a hot water bottle (never an electric blanket because I can't deal with heat in my legs)"

Me too!!! Hate double bedclothes whether it is sheets and blankets or a duvet - been using single duvets like in Germany for about 40 years!!!

[Odosmum in reply to PMRpro]

Me too! Mine is a 9.5 tog and the freezing OH is 15 tog in winter. Last summer, I discovered 1 tog duvets - perfect for warmer weather.

[PMRpro Ambassador in reply to Odosmum]

I have a set of 4.5 tog IKEA specials! Use them all year round - up here it is usual for night temps to go down to mid-teens C and the flat is amazingly warm in winter. Put 2 together for the coldies. Or a blanket on top that is easy to chuck off. I bought 2 gorgeous pure wool ones a couple of years ago - put them over me rather than turn the heating on in the afternoon. My middle name is Mean ...

[Odosmum in reply to PMRpro]

Bit colder here on Scotland's east coast 😉

[PMRpro Ambassador in reply to Odosmum]

Don't - no-one is really selling me a return to the UK!!! Where are you?

[Odosmum]

East Lothian - about 25 miles from Edinburgh.

[PMRpro Ambassador in reply to Odosmum]

Must meet up some time when I get to Fife!!

[Odosmum in reply to PMRpro]

Sounds like a plan 😊