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.

Hi Joan,
The first goup of kids leat on Sunday nite and the 2 youngest left at 1:00 today. I babysit for my 2 mo. old granddaughter almost every day and my 3 yr old grandson when he is sick and can't go to daycare. I love them more than anything, but watching them kills me. I am so tired and the pain is so bad after I watch them. Even the pain meds won't work. I don't know how much longer I can do this.
At the pain clinic there is a thearapy group, but it isn't just for RSD. It ca include all kinds of things. I'd rather go somewhere only for RSD, but there are no groups around here. I do see a therapist, but by myself. The panic attacks are real bad for me. Too many problems in my life. My husband is also disabled and sometimes its hard for me to deal with all of his issues plus my own.
People drive me crazy too with all the stares and comments. I have a handicap sticker for parking and a woman yelled at me for parking in a handicap spot. She couldn't see my legs, I hadn't gotten out of the car yet. She made me so mad.
Well the rain is driving me crazy. I think I'll lay down for a bit.
Have a good day.

Sue

HI SUE,
I AM FEELING YOUR PAIN FOR SURE. I ALSO HAD MAJOR PROBLEMS OUT IN PUBLIC WITH THE QUESTIONS AND THE STARES AND I ACTUALLY DID LOSE IT ONE DAY AND YELLED IN THE MARKET AT SOMEONE TO 'TAKE A PICTURE'. I STOPPED SHOPPING AND SENT MY HUSBAND FOR MANY YEARS. AND YES IT IS RSD RELATED
OPPS, SORRY I AM TYPING IN CAPS ...
okay, so yes, constant pain + lack of proper sleep + brace + idiots = panic attacks at times.
i have gotten past it and now ignore people when i do go out but going out is harder now, so i do not market or do anything where i stand too long or walk too long. i was on tranxene every time i had to go out though until i got past it. how i'm not sure, i just did.
i also have grandsons ... six ... and they are always here, and i do mind the 5 year old on tuesdays, and the 7 year old on saturdays, and i have a 14 year old living with me right now because he is a 'problem' and i am the one best to deal with him right now. i am exhausted from it all but i would rather keep busy and hurt. some choice, eh?
i read on another thread about how to play with a child when we have rsd and it was very good ... she said to use the computer and play games and i do and i play cards and board games and sit on the floor with castles and such ... i am not a gramma that can run and play ball, my grandsons have all become used the that, and are very accepting. the older ones are also very loving and helpful and have learned much about empathy from it all. i have been rsd for almost 12 years now. so most of my my grandsons do not remember me as i 'was'. they only know me as i am, and as i get worse ...
i think the emotional strain of rsd is the hardest thing to live with. my mind says 'go' and 'do' and my body stops me in my tracks ... it is so so hard.
and i saw you say your husband is also disabled ... so do you have to take care of him too? my goodness.
there comes times that we have to learn to say .... i would like to do that but i no longer can ... it is when we have no more spoons! i have learned to do this. some accept it and some are not happy with it ... like my mother and my husband but i can only do what i can and no more.
so, you are not alone. you have me and other here and we all understand .. we understand all too well.
joan

Ha! Decided To Go Back And Find The Sue/joan Hip Sister Beginning! It Was Looked At By So Many People! And Sue And I Have Become Good Friends. So Decided To Bump It Up And Hopefully Sue Will Come On And See It.
Love Ya Sue!!! Your Hip Sister, Joan

Joan,
Iam so glad we are back. I couldn't have asked for a better friend. It still amazes me that I found someone that knows what life has been like for me right from the start. Love Ya!!!

Always your hip sister Sue