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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Irish,
I have a horrible time with the weather. I'm very sensitive to the cold and air movement. I live in the Pacific Northwest and it gets very cold in the winter and we get TONS of snow. We got over 6 feet last year in a matter of a month.
Anything cold really effects me and the rain makes me really stiff and cause flare ups. In the winter I am very limited when I am able to go out. The cold flares up the rsd so bad that I won't be able to move for days other than those wonderful full leg spasms. lol
I've noticed that any cold really causes pain. Even cold air coming from an open fridge can effect my rsd. And windows being open,fans being on is a big no no unless I'm completely covering my leg.
I have learned that there are a couple of things to make going out in the cold a little easier. I have a heating pad for my car that is hooked up to a a/c power inverter. It's able to help keep my leg warm. I always use a heating pad anyway,it has been my friend for sometime now. I also use a sleeve under my pants and I'm usually in a fleece or thick cotton pants and hoodie. Wearing anything that isn't micro fleece just drives my leg up the wall,everything feels like a really rough sand paper peeling my skin.
Between the heating pad and warm clothes I do find it easier to go out in the cold with out it being to bad. There are certain days when I can't go out at all,especially if the wind is blowing.
I hope your appointment goes well with your doctor. You need to be your own advocate and let the doctors know how this disease is effecting so many aspects of your life. This is your life,and they are working for you,not the other way around. You need to be able to trust in your doctor that they are doing everything they can for you to make sure that you can live with this disease and be able to fight it. You can't fight if you are completely beaten down by all the little things too. You have to find a happy medium with you and your rsd. It isn't easy and some days,especially if you have problems with cold,wet or the wind you may need to be able to give in to the rsd for a day or two so that you don't get those flare ups that last for weeks on end and sometimes it's better to just let it put you down for a couple of days,get some rest and be able to fight another day. I hope I've been some help. If you have any questions don't hesitate to ask. The cold and I don't get along at all so I know a few tricks.
Take care and stay warm,
Deanne
Irish,

I completely understand the excess of pain with cold weather. I have the same problem. I use heating pads to keep my leg feeling warm. If it doesn't warm up it sends me into flare ups. I would try it,it's worth a try.
As far as the sweating, it can be very common for people with rsd pain to sweat in different parts of their body or sweat more than usual. I too have that problem.Flare up or not. My doctor has said many times that people who deal with high pain levels on a regular basis do tend to sweat more because it's the bodies natural way or trying to rid pain responses. Also over time your body can produce more sweat glands or bigger sweat glands because of the pain. When your body is in constant pain it can elevate blood presure,heart rate and both of those can also contribute to more sweat glands that make you "Sweat out the pain". It can be quite hard and embarrassing to deal with. Not sure about you area but here you can go to dermatologists and get prescription deodorant to help with the increase of sweat.
As always consult your doctor who is seeing you for your rsd before trying anything new,even prescription deodorant.
I hope that you are able to get some relief. I would do research on all the hospitals and rehab clinics here in the states and make sure you choose what is best for you and your special needs when it comes to the rsd. Most hospitals and pain clinics will also do consults over the phone to answer any questions about their facilities and any concerns you might have. You can also get a feel for the doctor and the staff that way too before coming all the way over here and then possibly have to go home unhappy. Always always do your research. Don't forget the doctors are working for you,not the other way around so make sure you are comfortable with the doctors and are able to have an open and honest relationship with them on what you expect or want.
Take care and stay warm,
Deanne
Irish,

Any way that I can help you I will. I've been there. When I was diagnosed with rsd my surgeon said well we think you have rsd we're gonna do a few things for you but then you're on your own,there isn't much out there. I didn't even know what rsd was or want it really meant for my life. Such hope from the doctor that is suppose to see you through your problems. I have spent almost 3 years now researching EVERYTHING,talking with doctors,looking at countless medical trials and studies so that I don't have to have that "alone" feeling like I did have when my surgeon told me. Unfortunately there isn't much expanding research out there for the doctors to find out more with. Sometimes I feel that since it's not a popular disease there isn't all that funding so it's harder for doctors to do more research or educate each other on things that they have found.
I'm really sorry to hear about you breaking your fibula. I can't imagine the pain you must be going through right now. Is it in the areas of rsd or some place else? I hate to say that in a way your doctors are right,but there really isn't much that can be done to the fibula in less it's a full brake. Only time and lots of rest can help with the healing.
I understand what you mean about feeling like crap. It sucks really bad. This may sound really girlie but I grew up in high heels. I always wore them,every where,even in the snow,since I can remember. When I was diagnosed they said because of the muscle loss,the random spasms I couldn't wear anything with any type of heel. Do you know how hard it is to wear a dress at a wedding with sneakers on. lol Probably not :D
The clothes I can understand too. I've very sensitive to touch and clothes are a killer. I some times have had to pump myself up in order to get dressed in the morning. It's so degrading when you cry because you can't put on a pair of jeans or your spouse has to quickly put your socks on for you.
The best thing I can tell you is to start replacing some of your rougher clothes. I have found that micro fleece and other fabrics like that are a lot easier to deal with. You may want to look into a micro fleece sleeve that you could put on and then put on your jeans or rougher clothing. I have one and it helps,it also helps to keep my leg warm. My leg just doesn't hold the heat like it used to,it gets so cold feeling so easy. Of course it's sucks when it feels cold but is burning like it's on fire.
Burning and stiffness can be natural. Especially in colder weather,if you over did it and some times it can be swelling that causes it too. You can have swelling behind the patella fat pad in your knee without really knowing about it other than some stiffness. Have the doctors looked for that or tendinitis.
When I was going through therapy I started getting a lot of tendinitis and it would take months for it to go away. It could also just be the rsd acting up.
I really hope that your insurance will let you come to the states. There are some clinics and hospitals that have great rsd specialists that may be able to help you. Please do your research and talk with the staff about their percentages on recovery and things like that. Also research the treatments that you are interested in,the more you know going in the better they can answer your questions and concerns. It helps when you aren't just going through the dark and hoping the doctors hold your hand. You have to be in charge of what you expect. This is your health and your life.
Yes it is normal for your leg to look normal but be in horrible pain. Most of the time people usually have red,blue or even purple blotches when they are in pain,but not all the time. Some times my worse pain can be there and there isn't a single blotch. Other times there is.
Rsd can really be confusing and frustrating because you don't always know what to expect. It's not like you have bruises and horrible swelling in order to have pain. You can look normal and not know that the rsd is getting ready for a flare up.
I'm glad I've been able to help you. Anytime I can answer anything for you I will,even if you just are tired of feeling like crap and want to vent,it's ok. I understand. I've been there,it's scary and if I can help someone get through this and not have the feelings I did then I think we are both better off.
Hope you are getting some rest. Let me know what the insurance company says. I'll be keeping my fingers crossed that you are able to get the kind of help you want and need. You are in my thoughts.
Take care and stay warm,
Deanne





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