Hi Joan,

I didn't know if you saw my other post. I did get your message, thank you.
Iam not so good at this computer stuff. I did send you something back, but I don't think it went through.
My hip problem started at birth. Congenital also. In 1999 I had a hip replacement and ended up with siatic nerve damage, right foot drop, and RSD.
I live near Springfield so it was nice to hear from someone close to home. I have searched for support groups in this area and there are none. This is a great place to talk to people. It just makes me feel better, not so alone.
I hope your doing well.

Sue K.

wow, also congenital from birth and then hip replacement with the same damage. that is something. i was surprised to find rsd people, never mind one with such a similar past. i look forward to chatting here. sometimes i forget who i told what to and repeat myself so excuse me if i do.
did you have your surgery locally? my last replacement was at the new england baptist ... the damage was already done from the surgery in fall river where i had it replaced a year before. wish i had gone there for that reconstuction and replacement first. i had my first hip replacement in 1974.
well, nice to meet you ..... sorry you are here. joan

Hi Joan,

I had a reconstruction done of the hip in 1987. I did ok for a while, but one morning I got up in 1998 and could't walk. I went to my doc and thats when he said I needed the hip replacement. I had an arthritic cyst on the hip socket. I had my operation at Baystate Medical in Springfield. When they got in there, the postier eall had been eaten away by arthritis. when they put in the metal walls to replace the bone, my sciatic nerve got damaged in 3 places. I've gone down hill since then, Thats how I got the RSD. I hope your doing well.

Sue K.

my doctor in boston told me they had stretch the nerve in Fall River and that is what caused the palsy with the foot drop and numbness and the rsd was just a bonus i guess.
may i ask what treatments you had as a child forthe congenital problem? mine was not diagnosed until i was four, i was falling alot, and then i spent two years in body casts from my underarms to my toes with my leg in all sorts of positions to try to get the hip in the socket the right way. i ended up with a 4-5 inch difference in my leg lengths from that. over the course of the three hip replacements, that is almost normal now. but of course now with the palsy and the rsd i am in a differet mess .... i did manage to have a family and become an RN despite it all, but that is all gone now.
do you go to a pain clinic now? i just use my pcp at present. joan

they found my hip problem when i eas 2. i also had the full body casts. My grandfather was the one who noticed the problem. He took alot of home movies and told my parents to look at how i walked on the films. my right foot was pointing out sideways when i walked. i also had the length problem. my right leg was always shorter. I somehow managed to work and have a family. I have twin daughters, 26yrs old and a 22 yr old daughter, 5 grandchildren. work for me is also gone now. i really miss it. its one of the big problems i have had to deal with. i would give anything to go back to work.
i've been going to a pain clinic since 1999, 3 months after the hip replacement. its like my second home if it wasn't for them i don't know what i would have done. my orthopedic dr. wanted me to just deal with the pain.
Joan, its so nice to be able to talk with you. thank you so much.
hope all is well.

Sue k.

hi sue. the similarities are amazing. my grandparents kept telling my parents there was something wrong too, but my mother, who was not and is not a very nice person kept telling them i was fine until the constant falling made them have to address the problem.
i don't think i ever met someone who has been in the body cast .... wow, my mind is amazed. other than mine being in my left leg, i think we are twins! my birthday was yesterday and i am now 55, been married almost 38 years and
i have two children, a daughter who is 36 and a son who is 35 tomorrow and i have six grandsons, 18, 17, 15, 14, 7, and 5.
i too miss work so much. i was talking to my therapist yesterday about how that was when my disease took over, up until then i had fought a good fight.
what did you do for work? i was a nurse, ortho, surgical, then icu and recovery room. i took a leave of absence to get my hip replaced and never got to go back. i loved it beyond love ... and miss it all the time.
now, is your pain clinic close? what do you find you get out of the pain clinic? my pain is getting worse and has spread to the right foot and i am told i have reynauds in my hands but i often wonder if it is the rsd, and i am considering a clinic but i don't know what i want to do at this point. i have always used my pcp and just a therapist, except for the facet blocks for my back that i went to the baptist for. i have a bad degeneration of L4-L5 from the leg length difference and walking like that for years.
well, i look forward to getting to know you better. joan

Happy Birthday!

My mom sounds just like your mom. She never paid attention to the problems I was having until it was to late. She still thinks this is all in my head. She always tells me I should just be able to get over it.
Iam 48 yrs old and married for 25 yrs. For along time I worked at the A&P as a Head cashier. Then I worked at Shirners Hospital as a housekeeping supervisor for 5 yrs. Then I had the hip replacement and couldn't go back. 2yrs later I tried working at Cumberland Farms as a store manager but that didn't last long. The pain was too bad. Iam now on Social Security.
I love going to the pain clinic. The Doc I have there knows alot about RSD. They see alot of patients with it. If it wasn't for them I don't know what I would do. I have a spinal cord stim, but I had a couple of bad falls and the leads slipped out. it had to be turned off. The pain clinic is at Baystate Hospital in Springfield. I think it would be good for you to go. As many Dr. as Ive been to in my life, these are the ones that have helpedme the most.
It is amazing how alike we are. Ive never known anyone thats had the same things happened like me.
I enjoy talking with you. Take care.

Sue K.

thank you for the birthday wishes. the age does not bother me but how i feel at this age does ...
what do you take for meds now sue? i have steered away from so many things, and had bad reactions to others, that i am back to just my neurontin 400mg tid, and tranxene 7.5 at bedtime for sleep and cramping and if needed for anxiety, 800mg of ibuprofen when needed, heart and bp meds, and right now i have no breakthrough med because the ultram makes me so nauseous and we could not deiced on anything else .... and i had to stop my trazadone because i was losingthe ability to tell if i had to pee! now that was the last straw there. it was helping with both mood and pain but yet again, it had bad side effects.
anyone else with ideas on meds ... i'm welcoming ideas.
i have taken vioxx, cymbalta, and many narcotics that just make me loopy and sleepy and i prefer pain over that. so i'm open to suggestions.
i have not done blocks ... scared to death there. had the facets for my back and that was enough for me. and scs also scares me to death and with my back deterioration i dont think i would be a candidate for that anyhow.
and sue, do you use a cane and/or brace for the foot drop? i am happy to say that whoeever mentioned the gel insoles is an angel. i tried them ni my shoe inside the brace and i am so much more comfortable and able to keep shoes on much longer. thank you thank you thank you.
joan

hi joan,

i started wearing a brace on my foot the day after the hip replacemet. i take oxycodon for pain,and xanex for sleep and the panic attacks. i used to take methadone but it had awful side effects. neurontin didn't work for me. iam supposedto start taking trazadone, i thought it was topamax but when you mentioned it it sounds more like what the doc said. i didn't mind the blocks. but they stopped working. i go on july 9th, i'll have to see what they say. my foot is really turnng out bad. its hard to walk.
well i'll have to go for now. the grandkids just came over. talk to you soon.

SUE K.

Hi Sue,
I Had A Day Full Of Grandkids Today Too. They Were In And Out Of The Pool More Times Than I Can Count. It Was My Son's Birthday On The 1st So We Had A Little Cake For Him After A Cookout Today. My Husband Did Eveything And Yet I Am Tired And Will Be In Bed Soon .... I Look Forward To Tomorrow Because It Will Be A Quiet Day I Think??? We Havea Big In Ground Pool So I Never Know Who Will Come By Or When. And I Love That But I Get So Tired.
Now Do You Meet In A Group At Your Clinic With Other Rsd Patients? And Do You Go To Therapy There? I Have Counselor Who Is Wonderful And Who I Go To Every Week. So You Have Panic Too. I Guess That Is Part Of The Stress Of This Monster. Iam Not Bad Now But Had Some Tough Years With That And With People Staring And Asking Question ...
Well, I Am Off To Bed. Have A Good Sunday.