I have become hypersensitive (again) throughout the skin on my legs and feet to the stage that even atop sheet triggers pain and I believe is leading to blisters (which I'd worry go on to ulcers...).
I bought a bed cradle and it really helps.
Has anyone used one and how did you go over time?
The link shows what they look like and how they work. Only cost $50 (Australian).
I made myself a ‘cradle’ (I call mine the cage) from a fire guard years ago, In the summer it is covered with just a light blanket, in the winter a duvet. After a while I found I couldn’t bear to have any cover on me below my waist and extended the cage towards me with the side of a baby’s cot. The most I can tolerate in the way of bedclothes is a light piece of fleecy material on my shoulders, Summer or Winter. It definitely made a huge difference as any covering on me at night used to result in a flare. The disadvantage of it is just its weight which makes changing the under sheet a major operation. At the moment we are having a hot spell and I am flaring every night anyway but hot spells in UK rarely last too long.
Sorry to hear you are hypersensitive again and hope the cradle works. Thanks for the link. I may well follow it up if my Em doc is unable to come up with any effective pain relief medications when I see him late August. I feel like I've been waiting for ever 4 that appointment.
May I ask how you would describe the hypersensitivity you are experience again.
Dkel this is why I made my own cradle, It’s much taller and wider. I still had the problem of sometimes touching it as I move about a lot at night and I have it lined on the inside with a thin duvet so I don’t get the electric shock type pain if I connect with it, just the heat. As you say it doesn’t stop the stinging and burning of a flare and if I get woken in the night there is no option but to get up and chill my legs until they are cold enough to try again. I take clonazepam at bedtime because I experience wild myoclonic jerks along with the burning and the temptation to take another to get me back to sleep is strong but I know I will wake feeling extra groggy and regret it.
I am so sorry for you all down under going through Winter, in my case much more difficult to deal with than the warmer months.
Blue, that is a long time to wait for pain relief medication. I came across a quotation from Silas Weir Mitchell who first put a name to the condition, to the effect that any physician who has not experienced pain is imperfectly educated. Perhaps if the medical world was peopled with pain sufferers we would get more help and sooner.
I can't really blame my doc as I waited until I was backed into the proverbial corner before making an appointment to see him. I should have done it earlier as I know he is in big demand. But I have had other docs tell me I can't be in 'that much pain.' I don't put up with that response anymore. There have been times in the past when I cried after seeing a couple of docs. I had the satisfaction of letting one know that I'd fired him. I felt better afterwards and hope I gave him something to think about for his next pain wracked patient. Mostly, i have good doctors now who listen to me. And my new gp has realized he doesn't understand my health problems, has stopped lecturing me, and just tries to work with me and my specialists. Basically, he seems to be a good guy.
Nel said:
Dkel this is why I made my own cradle, It's much taller and wider. I still had the problem of sometimes touching it as I move about a lot at night and I have it lined on the inside with a thin duvet so I don't get the electric shock type pain if I connect with it, just the heat. As you say it doesn't stop the stinging and burning of a flare and if I get woken in the night there is no option but to get up and chill my legs until they are cold enough to try again. I take clonazepam at bedtime because I experience wild myoclonic jerks along with the burning and the temptation to take another to get me back to sleep is strong but I know I will wake feeling extra groggy and regret it. I am so sorry for you all down under going through Winter, in my case much more difficult to deal with than the warmer months.
Blue, that is a long time to wait for pain relief medication. I came across a quotation from Silas Weir Mitchell who first put a name to the condition, to the effect that any physician who has not experienced pain is imperfectly educated. Perhaps if the medical world was peopled with pain sufferers we would get more help and sooner.
I replied to you but can't find the reply. I'm trying to learn how to use a 'tablet' - so far not too successfully.
Thank you for taking the time to describe your pain. I feel for you.
Blue
dkel9307 said:
Thanks Blue.
I hope you get the right doctor, advice, treatment and recovery...asap.
The hypersensitivity is that my skin feels like it is burning or has been touched by acid if anything touches it. For example, last night my foot touched the bed cradle, which is made of metal a few times. Each time, it felt like I was touching a scolding rod...even though the cradle frame was very cold (was about 5C last night). Also, if my toes touch sheets, it is as if I have a 3rd degree burn and the sheet has ripped all my skin off.
The cradle is hurting, but it cannot do anything to help the stinging and burning that goes an even when nothing is touching the skin.
In my feet, even though they are elevated, it feels as though I have stepped ion thousands of shards of glass, and they are being taken out. It can be a bit like, when down on the ground, my feet feel like they fill up from the inside and the burning pain comes like shards of glass going in; when they are elevated, it reverses...but its never-ending.
Fun! All part of chronic pain's rich tapestry, I guess.
Well done for telling that doctor to his face Blue. I am more likely to cry as I head for the bus home and then spend the next 24 hours writing angry letters in my head. I came across a quote by Silas Weir Mitchell, physician who gave EM its first name, Mitchell’s Disease: “As to pain, I am almost ready to say that the physician who has not felt it is imperfectly educated”.
By the way there is an incredible amount of information on the web about Dr. Silas Mitchell, whole books to read. He had some odd ideas but I supposed they belonged to the age in which he lived and he was passionate about his work. Poet and novelist as well as physician with dozens upon dozens of research articles too. It would take you a week to read it all.