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!
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Almostaweed
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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.
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.
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.
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.
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!!
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.
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