Living with RSD is difficult to all of us with RDS (Reflex Sympathetic Dystrophy).
The burning pain is internal, it is when our limbs or other parts of the body fills with an overflow of blood.
When this happens, it burns like you are on fire and your skin most of the time turns red and shinny. Also you may experience mild to severe swelling. When this happens your bones get thin because the blood washes it away.
The burning pain I have experienced comes in two ways. You are probably wondering what do I mean? Well, they both are excruciating pain but when your body goes from freezing cold to burning pain, it really makes the burning pain worse.
The other burning pain is when your body temperature is normal and then the burning pain comes on, but is not as excruciating as it does not span from extreme cold to extreme burning, but goes from Normal body temperature to burning pain. The pain is almost as bad but the extreme change is not as severe.
Now this shows up on x-rays because one doctor informed me I have a foot of a ninty-five year old person, and that was when I was in my early thirties. He did not want to keep me as a patient because you can suffer from many fractures as your bones become brittle.
The other thing is (and this is very important), when you have RSD you are extremely hypersensitive to touch, an example would be air hitting your skin, even a light breeze, or bedsheets touching your skin. Any type of vibration is magnified 100 times, even a slight touch to the affected area can cause untold pain that can last for days, as pain is radiated through your body and leaves your whole body in severe pain for days. As hard as this is to believe even a few drops of water touching the skin can not be tolerated which leaves simple tasks like bathing, washing, or simply enjoying a spring rain intolerable.
Now are body is made up of nerves connected to each other. If you think of a tree, there is a trunk and it reaches out into branches and it has many branches. This is the way the nerves work in our body. RSD does not stay in one place It does spread. People with RSD can tell you this and you can visually see this as time goes by. Now not everyone is the same so you can have RSD in your arm or foot and some people have it in their arm and it goes into their back, shoulder, neck and stops there. While you have another person who has it somewhere else like the foot and it can keep on going. Like your leg, hips, groin, other leg into your back and all the way up to their arms.
Other people may have it throughout their entire body. It seems that everyone or almost everyone has it in their back like the trunk of the tree.
Now if you have RSD in the upper part of the body, it may work it’s way down towards the lower part of the body. If you have RSD in the lower part of the body, it works it’s way up. There are other types of pain associated with RSD, A href= >Check here.
It is really difficult to live with pain every day. It is like you are stuck in this mode all the time and can not get out of it ever. During that day you feel the pain repeatedly (over and over again). There are many times you have to take life minute to minute. This goes on day after day throughout the years. As the RSD (Chronic Pain Progresses as it does), we need medication to live through it. You start with pain medication and move into low narcotics till eventually you are on daily doses of Morphine and other controlled narcotics.
You have great difficulty getting comfortable in sitting, lying down, also sleeping and some people can not walk. Changing positions often with the help of pillows, air mattresses or anything that offers a type of relief. You are unable to concentrate on what you are doing no matter what it may be ex: reading, watching TV etc..
Even the simple things in life like bathing, washing your hair, getting dressed are to painful. You would like to do things on your own that people take for granted. Your mind is saying you can accomplish four or five things a day but your body does not allow it.
I believe people should know about this as there is no cure for this or any medically acceptable treatment.
Finally, The complications dealing with family and friends.
A loved one watches you helplessly. They see the pain, they hear your cries and moaning and can not do anything about it. They ask all the time questions like, “Is there anything I can do” or “is there anything I can get you?”. They listen to you but there hands are tied just as yours are. They can cry with you, feel bad for you, suffer along with you, but in the end this illness leaves you totally alone except for the guilt that is added watching loved ones go through so much anguish.
This pain is really indescribable as I have tried to explain it the best way possible, and all we are left with until the medical community decides to help is the people close to us (if we are lucky enough to be blessed with them) and “Prayer”