Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 11-12-2013, 08:40 PM #1
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I thought I would share my story.I fell down during the winter about 3 years and 10 months.During that fall I twisted my body as I fell receiving a pinched sciatica.I was in bed for 1.5 months.Started to feel better ,and then all fire let loose on my right leg,hip and knee.I was in so much pain.This went on for years,no one knowing what was wrong with me.I went to see so many doctors of all kinds.I saw one in Saratoga that thought I was crazy.He ran test,and could not understand the pain,swelling and pain.Finially I did some research and read about Rsd.I went to one more specialist,She said have you ever been told you have RSD?? I started to cry..For once someone was listening.Then after that my primary Doctor said She is right you have RSD.I have had shots,nerve blocks.The doctor could not get the right nerve.I have tried many things.I do not want bore you with it all.
I am now dealing as best as I can with pain,swelling,burning,nerve jerks,sweating,rashes and tightness behind my knee. It also goes in the bottom of my foot too. I have trouble walking.I used to walk a lot.Now I use a cane or and wheelchair.Some days god blesses me and I walk.The cold and weather bother me.Lately its wearing me down.The weather effects it a lot. I still work,but some days are better than others.I wish I could stay in bed when its so bad with my heating pad.
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Old 11-12-2013, 09:09 PM #2
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Hello moose. I'm practically a neighbor - I live in just outside Albany.
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Old 11-12-2013, 09:55 PM #3
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That's good to hear.Its a tough but we must keep fighting.How long have you had RSD?And where?
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Old 11-13-2013, 07:50 PM #4
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That's good to hear.Its a tough but we must keep fighting.How long have you had RSD?And where?
I have it in my left foot, for a little less than 2 years, but was only diagnosed in feb of this year. I have it relatively mild, because my pain is not severe and I don't have a lot of sensitivity on my skin -just a little like a sunburn. I have swelling, coldness, and pain when I walk or stand. I think that it is why it was not diagnosed early because my pain is not severe. Also i didnt have any injury. The doctor thinks maybe I had a tarsel tunnel entrapment but if i did it is gone. or else I am just prone to crps.

I had some lumbar sympathetic blocks, which helped some. Now I take gabapentin and voltairan. My pain is about 50% better than before. I try to stay positive - I am lucky because I can still drive and work and such. I am lucky to have a desk job, so I don't have to stand a lot. And I am lucky that it hasn't gotten worse and it hasn't spread.
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Old 11-13-2013, 08:08 PM #5
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Every day is new.i am greatful I still work ,drive and walk when able.when I go shopping I have to use a wheelchair.I hate it...But I have to.I get in,might not get out.I sure hope they find a cure for all of us.I will pray for you.I hope you enjoy this site as much as I ..Please keep us posted how you are.
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Old 11-13-2013, 08:16 PM #6
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One more thing ..you better read what others have said about injections..It is a tough choice.Thinking it might work.I had 3.nothing worked,,PT chiropractor,and acqu...after each time is was in bed for atleast 3 days..Have you tried a heating pad?NO ICE EVER...YOU can cause more damage..Good luck
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Old 11-14-2013, 03:35 AM #7
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Quote:
Originally Posted by moosey2me View Post
I thought I would share my story.I fell down during the winter about 3 years and 10 months.During that fall I twisted my body as I fell receiving a pinched sciatica.I was in bed for 1.5 months.Started to feel better ,and then all fire let loose on my right leg,hip and knee.I was in so much pain.This went on for years,no one knowing what was wrong with me.I went to see so many doctors of all kinds.I saw one in Saratoga that thought I was crazy.He ran test,and could not understand the pain,swelling and pain.Finially I did some research and read about Rsd.I went to one more specialist,She said have you ever been told you have RSD?? I started to cry..For once someone was listening.Then after that my primary Doctor said She is right you have RSD.I have had shots,nerve blocks.The doctor could not get the right nerve.I have tried many things.I do not want bore you with it all.
I am now dealing as best as I can with pain,swelling,burning,nerve jerks,sweating,rashes and tightness behind my knee. It also goes in the bottom of my foot too. I have trouble walking.I used to walk a lot.Now I use a cane or and wheelchair.Some days god blesses me and I walk.The cold and weather bother me.Lately its wearing me down.The weather effects it a lot. I still work,but some days are better than others.I wish I could stay in bed when its so bad with my heating pad.
Hi that is horrible what you have had to go through i really feel for you I know all about
the cold weather i live in New Zealand and i use to live in Lake Taupo middle of island very cold
winters never went anywhere pain was too much had to wait untill summer before could do anything
Now i live on the east coast little rural community and we have short winters helped me alot maybe
it might work for you what i did was spent a weekend where i wanted to live a found my pain inproved
alot so i moved there and its close to the sea which i find healing.

I have crps of my entire right side head to toe RSI from milking cows had for seven years now
hope what i said helps

Rock on Peace out
Mike NZ
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Old 11-14-2013, 09:53 AM #8
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Nice sharing with you Mike.I wish I could move sometimes,but Family and the farm is a big factor oh and work..That terrible thing we need MONEY..I know one thing I really worry about this Insurance issue we all will have.Its scary.Not going to have insurance plan we had.Whats this world coming too.Not sure if I will be able to afford our meds.Even..But we must trust the Lord.
I do use the heating pad a lot.Never tried the salts but I hear it helps..I will try it.The mouth sores are terrible.But just starting to heal up again..Good hotwings and pizza tomorrow...HAPPY ,Happy..
Its pretty cold here,in Gloversville NY.its been in the 20's at night..30's in the day,had snow flakes the other day.Today in the 40's heatwave..Hope you are doing well ..God bless...oh ya I read here get booties that heat up in microwave.Going to look into that too..
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