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personal stories and notes from our correspondents
Tin, Cody Wyoming, USA
My husband is suffering from RSD now going on 4th year. On March 3, 2001 He was admitted to a hospital with bad headache. The nurse had a hard time to establish an IV needle in his hand. She tried 3 times in his right hand, 2 or 3 times in his left hand, finally agitated stuck the needle in his right hand, slapped the bandage on. The medicine they gave him was Phenergen and Demerol. It infiltrated his right hand. His right hand swelled up turned red and was burning him. WE kept asking how come his hand is swollen and red and burning, but got no reply. No one removed the needle through the whole night. They just kept shooting the medication an apparently it infiltrated, burning his sympathetic nervous system. He had a spinal cord stimulator implanted, he had a peripheral nerve stimulator implanted in his forearm on a trial basis but that did not work. We moved to Florida to live with my sister because of financial situation. There we have seen countless doctors. One of them was Dr. Anthony Kirkpatrick an RSD specialist and a great doctor. My husband had 11 bocks which none helped. Dr. Kirkpatrick said he had a sympathetically independent pain one of the worst kind. Right now his RSD spread to his right side of the face and his right leg, and of course his right hand. Our lives are destroyed I do not know how long can we go on like this. He had to have the spinal cord stimulator removed because of complications. After countless trials on different medications he is now on Morphine and Oxycontin. He is growing weaker cannot walk for too long. Now his testosterone level was too low so he on Andoderm patches. The worst thing is the hospital and his own family doctor that we were going to every 2 days after my husband got out of the hospital, who told us to stop by so he could check his hand does not have any records of this. My husband hand was so swollen and red after he got out of the hospital once it turned black so I took a picture of his hands. You can see all the needle marks when the nurse tried to establish an IV site. My question is this - is there anyone out there who got RSD through IV needle infiltration? We need justice. We have a lawsuit pending but the disease and suing is draining us mentally. NO one knows what we are going through and we are to tired to explain.
Erela Collins
Hi My name is Erela Collins. I had spinal fusion surgery three years ago after a fall in 1999 on my back at work. I went for the surgery because all the physical therapy I was doing wasn't working. My doctor told me that I had a "crushed" disk and needed fusion. I asked him if the pain in my left leg and the sudden weakness that would make me fall would go away.... He assured me they would. They didn't. After surgery this doctor told my husband and myself that when my disk was crushed that my sciatic nerve was partially severed. Therefore I was as good as it gets. He PNS'd me telling worker's comp that I was 40% permanently disabled and I should be able to work 4-6 hours a day... That was two years ago. I have tried to work. I can only sit for a15 minutes at a time at best.... and cannot tell from one day to the next whether my leg and back pain will let me get out of bed. Now In the morning I experience numbness in my left leg that burns so bad I could scream. When the fusion was done the doctors inadvertently tore the nerves from my spine to my stomach. I cannot tolerate digesting meds of any kind. I go to
acupuncture, swim and attempt to work... Yesterday out of frustration I went for a 3rd opinion to a Neurosurgeon. I had all my x-rays, before and after... This specialist told me that I had had "needless" spinal fusion! That I had had RSD the whole time... He has ordered a new MRI and is checking into Pain Management Programs that specialize in Bio-feed back and non-medicinal treatments. But what do I do in the meantime? I have bills to pay and cannot work 4-6 hours a day. Does anyone out there have any advice?
Please write me at ErelaC@msn.com. Thanks for reading my story and
posting your own. It's comforting to know that I am not alone in this
mystery.
Pamela
Hello. My name is Pamela. I have had RSD for 6 years. I have 4 children, Michael12, Nicholas10, Rose 9. My oldest is my little angel. He helps out with all the housework. He knows how hard it is for me to do anything. My second child is my second angel; he can clean the bathrooms to the point to where you could eat off of them. My third child can help with the cooking. She is my special angel. She is my only girl. I have a forth child who is 4. He makes me feel special and always is very loveable. My husband just turned 50. He is a mailman and drives 1 hour to get to work. He makes the meals, cleans the house and helps the kids do their homework. When I got sick, it started in my left hip. It took the doctors 2 years to tell me what I had. I had 16 nerve blocks but they did not work. I was in a wheelchair for 8months,and then I had a spinal chord stimulator. Since then I have my second stimulator implanted. I have had about 5 battery changes and I take a lot of meds to manage somewhat of a life with my family. I have RSD from the waist down to my feet - but they don't know how I got it. Thank you for letting me share my story with your readers.
Vikki USA
I fell at work and hurt my knee. We were short handed
and so I toughed it out till the end of the shift. After all how would
it look for the boss to go sick? I went home and ended up going to
our urgent care. The doctor took x-rays of my knee and ankle and explained
it was a severe sprain and to go home and elevate and ice. I went
home with vicodin and a muscle relaxant and on crutches. This happened
Jun 04 of this year. I expected to be off a few days and went to see
my regular doc. He had me off from work in complete rest for two weeks.
I went back and they started me on PT twice a week and icing and elevating
and still on crutches. The pain meds were not touching the pain and
so after a month of trying to get authorization from workmen's comp
to have an MRI, they finally agree. The MRI ended up showing a lateral
meniscus tear and some cartilage damage. with inflammation of the
patella. My doctor sent report to WC to get their okay to see Ortho
and they finally gave authorization in July. Needless to say I saw
a Specialist top in the nation. My first appointment I had to wait
for 45 min and then he came in and spent all of ten minutes with me
and decided that surgery would be the best and was going to be a snap.
However he would have to get Ortho from workmen's comp. I finally
had the surgery on September 14th and then was told to resume pt and
he would see me in a month, I went back to pt and they could not unlock
the knee and the pain was unbearable so they suggested a term RSD
and that it would not help till I saw my Ortho. I saw him in October
and needless to say he was late again and looked at my knee and after
I asked about the limited movement, pain and swelling his response
was (I don't know) I was totally depressed, mad and annoyed with the
system. I am not crazy after all. It is now December and I just saw
a pain specialist who was the most caring individual and examined
my leg and descriptions and listened to my husband and he said it
was very evident that what I was experiencing was indeed RSD/CRPS
and gave me a nerve block. After the procedure my leg was a little
warm and he said that was a good sign and I should see improvement
in the next couple of days, I was excited when I left and overjoyed
that I was not nuts. Today is four days from procedure and I am back
to cold leg and pain level 9. I am scheduled to have my next block
on Jan 3 and another on the 7th. I am out of pain meds and afraid
to ask for any. Thru most of this time I have been toughing it out
and only taking them a couple times a day, rather than every 4 hours.
I am not going to let this beat me and am wondering what is the usual
response from these blocks. And if this pain coming back is what is
suppose to be normal?
Thanks for listening. Vikki
Nina - USA
my name is Nina and I am 32 years old. I was diagnosed with RSD 3 years
ago but I suffered with pain since I was 16. It all started when I was
hit by a car and suffered a broken femur in left leg and a broken hip
on the same side. I had a metal rod placed in my leg and was in a bodycast
for 9 months (not fun for a child!) I can remember as far back as the
7th grade my Mother was told by my Ortho. Dr. to give me plain aspirin
and it would take the ache away in my leg. But as I got older it did
not help any longer. By the time I was 19 I was addicted to percocet
that were given to me by my family doctor. I just wanted the constant
pain to go away. The pain was now in both legs , hips,and my entire
back and neck. I wanted to die. I went to so many doctors and they all
had a different story. I was told I had fibromyligia, chorinic fatigue
sysndrome that all the pain was coming from my endodmetreosis - oh and
the the best one "it's all in your head, maybe you should talk
to someone"
Well, after 12 Dr's and 33 different test they finally came to a conclusion,
that there was no conclusion! I had totally had it, and one day Iwas
in the pharmncy getting a prescription for some anti-inflamatory that
was not gonna help the pain anyway and Ii ran into a young man that
was talking about his pain To make a long story short, I got the name
and number to his Dr and now I am finally getting my life back. I am
currently taking 30mg of methodone, 2mg of zanafelx at bedtime and 15
mg of morphine for breakthough pain if needed. With the combination
of meds and yoga 2 times a week I am able to hold a full time job and
take care of my family. I am not totally pain free but I am able to
deal with it and also having the right Dr is a godsend. I wish all of
you the very best.