Hi Emily, my name is Lori and I have RSD but it is currently in remission.
Praise God~~~!!! I am so sorry things are so difficult for you. This disease is
very hard on the spouses. How long has your husband had rsd and is he in a
puter support group or home support group? That would help him greatly, if he
could do that. Would like to try and explain RSD pain a little if you do not
mind.
It is considered the worse pain in the world. To give an example, if you were
cooking on a stove and accidentally burned your hand, really bad, like 2nd or
3rd degree burns, it will hurt really bad. You know it is hurting cause the
Sympathetic nerve sends a message to the brain that you are in pain. As time
goes on and your hand starts to heal, you start to have less pain until it is
completely healed and you no longer have any more pain. But with RSD, and we
still do not know why, RSD pain is as if you burned that hand and even tho it
heals the original pain you felt when you first burned your hand, never ever
goes
away and you have it 24/7 for the rest of your life. Try to imagine the very
worst pain you have ever had, now try and imagine it 1000 times worse than you
had it, and that is how your husband is feeling. I don't know if you remember
a doctor in Michigan called Dr. Kavorkian. He was a doctor that helped people
with suicide. He is now in jail for life. But the last three people he helped
kill had RSD. The pain is so unbearable, even with medication and blocks
etc., that you do not want to do anything. Personally I have always said that I
believe the group to have it the worse is young moms with kids and men. Men are
taught to be macho and be in charge. When RSD changes that, it really changes
him. I am so thankful that I have a husband that was so supportive and never
complained when I could not do things. We went 3 years without sex, but you
never heard him complain. You are doing a great job supporting your husband and
it shows just by the fact that you are asking for help in dealing with this.
Make sure you are on spousal support groups, such as this to help you. And pray,
a lot. You should encourage your husband to still do things, get up and move
around. But you also need to know when you are in such excruciating pain,
sometimes movement is unbearable. On the other hand, we cannot just sit back and
do nothing cause we are going to have the pain whether we are sitting and doing
nothing or if we are active. It is a learned process as to how to be active
while in pain. and I am sure with your patience and love and understanding, you
will be able to help your husband be more active. Patience is the key. And
ALWAYS seek answers from others that are going through what you are going
through. You need the support just as much as your husband. I have added you and
your husband to my prayer chain and never forget that prayer works. I had RSD
for
5 years and it was in both legs, both feet, back, stomach, esophagus, and
face before I went into remission. Never give up hope for a remission or a cure
and encourage your husband to those facts. If it happened to me it can happen
to anyone. Please feel free to write to me anytime. God Bless, I am praying for
you!

Love Lori


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