Lottie

[Vagus]

I’ve been having a look at what your problems are, I’d never heard of them but they sound awful. I’m really interested to find out more about it, would you be ok sharing anything about it…for instance when you first found you had it, and how, what its progress has been?
I’m so sorry you’re having such awful problems, hope the doctor has managed to find some painkillers suitable. Take care xx

[Vagus]

Sorry if I overstepped the mark, Lottie, I was just very curious about this condition you have.
Did the doctor get you some painkillers that work?
I’m having a horrible day today, the pain and itching is the worst yet, barely slept last night and doubt I will tonight either, paracetamol doesn’t even touch it. If I knew where to go and buy some strong sleeping pills, I defo would!

[anneasquith]

Vagus, could your GP not prescribed some painkillers for you .? Failing that pharmacist are very helpful on the hole .
Hi lottie, so sorry you are feeling unwell .

[Vagus]

I may try gp tomorrow, Anne, for sleeping pills. We have v strong prescription co codamol which don’t do a thing, I just need to sleep.

[ladybirder]

Vagus have you tried Melatonin for sleep and Magnesium Citrate for aches and pains. Both work for me when needed.

[LadyCG]

Two Piriton would relieve your itching and give you a damn good night's sleep.

[Countrylover]

Oh Vagus poor you. I was hoping that things hadn't developed and had calmed down for you.

Here's some very exciting reading for you. I wasn't properly diagnosed untll my early 60s and it wasn't properly understood until quite recent decades. Children nowadays who are bendy are likely to get picked up quickly by the medical professionals and early diagnosis means that they can be treated correctly. The basic problem is faulty collagen and there is no cure, just treatment of the problems as they occur. Unfortunately conditions like this are not given publicity like, like cancer for example. So charity funds are low Unfortunately it quite often is hereditary and my son has it too. If I had learned about it when he was young, I would have made sure he had all the right treatment by physios etc and would have treated his bendyness more seriously. I'm now experiencing serious pain and actually more or less confined to our bedroom at the moment.

A new tens machine seems to be working much better than medication. :0)

https://www.ehlers-danlos.com/what-is-hsd/#1668011041344-828c1721-0f66

Anne, thank you so much.

[Countrylover]

Good thing. In my youth I was a super duper disco dancer who could do moves that others could never achieve.

[douglas9401]

Well if nothing else that explains the night fevers.

[Countrylover]

:0))

[pastafreak]

Vagus...regarding magnesium for aches and pains...magnesium glycinate is best for muscle relaxation, and magnesium is said to be useful for neuropathic pain.
Might be worth looking into. Same for you Lottie. Magnesium is a mineral that most of us don't get enough of, partly due to modern farming practices.
Oh...and vitamin D.

[lankeela]

Douglas surely wins t'internet today for his comment "Well if nothing else that explains the night fevers."

[Countrylover]

Well at least I'm 'Staying Alive' ;0)

[Vagus]

Lottie, here’s hoping the tens machine allows you more movement and release from your bedroom, can’t be easy, I do feel for you. Patience and reliance on others is definitely something which has to be learnt if you’re usually an active, independent person, I know from experience.
Many thanks to everyone for suggestions..I’ve been taking magnesium for a number of years to help with sleep, not sure it does much good but I continue with it anyway. Lack of sleep currently is due to the pain and itch of the shingles keeping me awake so I doubt melatonin would help much, I’m reluctant to take it anyway.
LadyCG, thank you for the Piriton suggestion, didn’t cross my mind to take antihistamines. OH has just come back from Boots with a giant box of them and it does say to take for chicken pox itch amongst other things. Have just taken one but will take two at bedtime to hopefully knock me and the itch out.
Thanks again for suggestions, I’m very grateful. And Lottie, chin up, and thank you for the info about your condition, I found it very interesting, what’s the phrase…every day’s a school day, learning never stops xx

[Countrylover]

How's it going? Just thinking about you

The medical team have now stepped in for me. Its called the A team or something similar and their aim is to act quickly in situations like we have . New pain regime, occupational therapist coming tomorrow. Free personal care for 6weeks from tomorrow, once a day _ and probably a hospital bed for me downstairs from Monday. Both of us are so relieved. Fortunately we have room to make me my own area at the back of our lounge which used to be a dining area. Pain was extreme yesterday and bearable today!

[anneasquith]

Lottie great news, hopefully things at home will improve for you both . I hope vagus has been sleeping better .

[Countrylover]

Hi Anne . It's been a relief. And Mr Lottie,bless him, can relax. I must admit he was totally useless at giving me a strange form of bedbath. Can't wait to have a have a proper wash and a hair wash. Just treated myself to a single duvet and covers that blend in with our the lounge!

Hope we hear that Vegas got some sleep. X

[Vagus]

Lottie, thanks, I did get some sleep, and the itches and pain have all but disappeared now, just a few scabs remaining. Think I got off lightly to be honest.
I’m so pleased you have all these new things in place to help you and Mr L, what a relief! Hope you’ve managed a hair wash now, always makes a difference doesn’t it? I know the NHS gets moaned about, and certainly isn’t perfect, but I’ve found that when the chips are down they come through xx