Im a guy. I have RSD and CRPS. Does anyone have a burning sensation that occurs on their back and arms, legs, head at the same time? Anyone?

[niceguy100]

Ive had CRPS, RSD my whole life. I just figured out what it was recently and Im 16 years old. This condition is a curse. I believe for me, these pains are irriversible. I have seen 20 specialists of all different fields of medical practices, physical therapists and I took 3 MRI's. I have body aches all over my body, when I eat hot food, cold food, whatever, I feel like a house on fire. Imagine you are on top of a volcano. Now imagine the volcano erupts and lava is pouring all over you. I always feel like Im about to explode like a nuke because its this unbearable. I sweat so much in cold weather like i was living in the desert. Its wierd. But sometimes freezing sensations which makes me cold in cold weather These burning/freezing sensations also cause panic attacks and affect school too. I have anxiety, and the burning sensations are so severe I can't take a math test. Instead I become uncontrollably angry and start breaking things. I become hotheaded for long periods of time, I can't sleep, I get dehydrated quickly even though I drink 4 water bottles at track practice, my social life is very limited. I am very sensitive to everything and everuone. I feel that my condition is limiting me. I feel my body is imprisoning me to not live a good life but I make the most of it when I can. But I can still move my body because I live in world of constant pain, others do too and I cannot afford to lose the ability to move as CRPS does to people. This is a burden but I heard it happens to females more than males. How odd. For me there might be no relief but you have a chance unless you're like me.

[Trishmurfin]

I too get all the anxiety and hotheaded episodes and I used to work with children so this isn't possible anymore. But I think the biggest thing I have learnt is that like you say we have to stay active no matter how much it hurts because lying in bed hurts too anyway and being active can help ease other aches and pains in my body even if not the ones in my leg caused by the CRPS. Have you looked into clinical trials? There is one I have read scour at the Walton centre in Liverpool where they think there is a chance that it is linked to the immune system. One other thing is food supplements, I am currently taking vitamin C as well as various others including L-lysine an amino acid that helps with the regeneration of nerves. I haven't been on them long but I do find that when I eat well and sleep well my moods at least are better. Maybe also see if the doctors can give you anything to sleep better. And most of all don't lose hope at the moment there is no cure but the world of science is developing so much these days I have faith that even though I have to live with this and some how rebuild a life with it, I believe that in my lifetime there will be a scientific breakthrough. I understand that school probably makes it difficult but do as much of the things you love that you can. There are also a few letters out and about on the Internet that you can print off and give to friends and family I will find one and copy it in for you. Hang in there and don't feel alone this is a good place to have a rant and get it off your chest but also for us all to help each other

Take care

Trish

[Trishmurfin]

Print this out and give copies to your family

Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand

that being sick doesn't mean I'm not still a human being

I don't feel well often times and I might not seem like great company, but I'm still

me stuck inside this body.

I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.

Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.

Please Understand

the difference between "happy" and "healthy".

When you've got the flu you probably feel miserable with it, but I've been sick for years.

I can't be miserable all the time, in fact I work hard at not being miserable.

So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.

Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.

Please understand

that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.

Imagine an athlete after a race. They couldn't repeat that feat right away either.

With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.

So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.

Please remember

that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.

Please understand

that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".

If you want me to do something, ask if I can and I'll tell you.

In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand

that "getting out and doing things" does not make me feel better, and

can often make me seriously worse.

Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand

that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.

Please understand

that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.

It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.

Please If

you want to, you can suggest a cure to me, but please don't act as if

it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.

If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.

There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.

I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand

that getting relief from an illness like this can be very slow if not imposable.

People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

Please understand

that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.

I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.

THANK YOU!

[welshnut]

My heart goes out to you, I also have crps and the burning kills me, I cry and I get mad and I wish someone would put me to sleep. Other days are better, sometimes the pain recedes enough for me to achieve things and I can be me and be happy.

I find warm water helps, a jacuzzi or a swim in a warm pool helps calm the nerves. I am careful what materials I allow next to my skin and I adjust the heating so I am comfortable. I avoid physical contact with others as sometimes the slightest touch can leave me in agony for hours.

Stay strong and stay brave I have met 3 people now for whom crps is a thing of the past, they have somehow switched of the disease sadly no one knows how but it is possible. Educate those around you about your condition and explain how frustrated it is making you. Ask your gp if he could arrange for you to see a councilor someone you can vent at and talk to that is not emotionally involved. We are here to listen and to let you know you are not alone so take strength from that. You do have a future and it can be everything you want it to be just do not give up hope.

nutty

[Pheonixalight]

I have CRPS in my left hand fingers - and I know about 'the burning lava' (good explanation of what it feels like) Like others have posted - DO NOT GIVE UP HOPE. In my 79 year old lifetime I have grown out of quite a few horrid things - Asthma, Rhianitus, and ecxema. The reason for this post is that there's a lot of interest in Coconut oil being used for all sorts of deceases at the moment tied in with diet, exercise etc. Maybe see if you can get into a programme for it. Being so young - you have a good chance that one day - your body will just cast the illness away - lets hope it's soon for you. Helen

[KittyGalore]

Just wanted to say my friends daughter has crps, she hasn't been able to move her left arm fora couple of months now. She's been referred to special place in Bath. She doesn't go to school and now had home tutors.

I myself have the burning sensation in my hands and feet but am yet to be diagnosed.

Don't ever feel like you're on your own x