Originally Posted by rachel's daugther

Hello Debbie
I can understand your frustration. My daughter who was first diagnosed in Feb 2010 with CRPS in her lower left leg, first by her orthopedic Doctor and than one month later by Dr. Norman Hardin at RIC. She has been through a lot this year and has seen a lot of experts including Dr. Timothy Lebenow at Rush and others all saying RSD. She has done RIC, Nerve Blocks (great relief, short periods of time) lots and lots of PT/OT but one thing did help her. We went to Pediatric pain rehabilitation clinic at Children’s Boston Hospital in Oct. We were there for 4 weeks. When we left she was off her crutches, was able to wear boots/shoes, clothes and starting running. Her pain level never changed but her sensitivity was much better; her skin stopped turning colors and was back in school. Yes, she has her good and her bad days but was functioning well.

Recently, she started getting “popping” in her joints, once in her wrist which lead to a spread in her left arm and then a pop in her shoulder which lead to a spread. I went to see a rheumatologist who knows about RSD to discuss this and he tells us she does not have RSD, if she did have it she does not anymore. He feels she has an entrapped nerve in her knee; trauma educed arthritis in her wrist and shoulder and may have fibromyalgia. Wants to do many tests which includes a EMG (worry some because heard really painful). All of this comes out of nowhere. We were planning to go to Rhode Island to try the Calmare treatments in January, but now we are not sure what to do. We will get ex-rays, blood tests, but hold off on the Bone Scan (doc says this will confirm whether she has RSD, which I don’t believe, to many tests come back normal, and still RSD) and EMG until we get second opinions. We have made plane flights for R.I already so that is still our plan to go. So confusing, so many opinions from different Doctors, very hard to know what to do.
Good Luck to you.

PS: Mike, Thank you for your posts on this site, you are so helpful and I have learned so much from your posts.

Originally Posted by rachel's daugther

Hello Debbie
I can understand your frustration. My daughter who was first diagnosed in Feb 2010 with CRPS in her lower left leg, first by her orthopedic Doctor and than one month later by Dr. Norman Hardin at RIC. She has been through a lot this year and has seen a lot of experts including Dr. Timothy Lebenow at Rush and others all saying RSD. She has done RIC, Nerve Blocks (great relief, short periods of time) lots and lots of PT/OT but one thing did help her. We went to Pediatric pain rehabilitation clinic at Children’s Boston Hospital in Oct. We were there for 4 weeks. When we left she was off her crutches, was able to wear boots/shoes, clothes and starting running. Her pain level never changed but her sensitivity was much better; her skin stopped turning colors and was back in school. Yes, she has her good and her bad days but was functioning well.

Recently, she started getting “popping” in her joints, once in her wrist which lead to a spread in her left arm and then a pop in her shoulder which lead to a spread. I went to see a rheumatologist who knows about RSD to discuss this and he tells us she does not have RSD, if she did have it she does not anymore. He feels she has an entrapped nerve in her knee; trauma educed arthritis in her wrist and shoulder and may have fibromyalgia. Wants to do many tests which includes a EMG (worry some because heard really painful). All of this comes out of nowhere. We were planning to go to Rhode Island to try the Calmare treatments in January, but now we are not sure what to do. We will get ex-rays, blood tests, but hold off on the Bone Scan (doc says this will confirm whether she has RSD, which I don’t believe, to many tests come back normal, and still RSD) and EMG until we get second opinions. We have made plane flights for R.I already so that is still our plan to go. So confusing, so many opinions from different Doctors, very hard to know what to do.
Good Luck to you.

PS: Mike, Thank you for your posts on this site, you are so helpful and I have learned so much from your posts.

Originally Posted by gabbycakes

Hi Rachel's Daughter,

It is a crazy road but keep pushing eventually the right doctor and facility will click. Have you thought about NYC. From what I read you daughters problems started out to be orthopedic in nature. I'm not going to bore you with my whole story. But after I had a serious fall and almost lost my arm,long story. I went to many doctors allowed them to do surgeries that came out completely unsuccessful. Just my luck my son's hockey coach worked for the NBA and was high in the rankings so we asked him after not getting any better where do the Knicks send there players, the answer Hospital for Special Surgery. I know everyone tells me to get off that HSS band wagon. But to me they saved my life, it's taken some time but I went from absolutly no functioning in my arm, RSD that was making me literally lose my mind and I could only use 1 arm, thank god I am a lefty and my right arm was hurt.

Anyway the facility is unbelievable everything is done in a thoughtout methodical way that's just the way the whole place is run from the best surgeons to the janitor. I have heard the Peds. area's are great. There website is www.hss.edu.

Today,7 years later, I am on permenant disability but do work PT as a Business Consultant,that's what I did prior to getting hurt, I have 1 client close to home. I am able to work while being on SSD, but I have to watch how much I make, it's not the hours. Any honestly I could never go FT, as much as I would like to. My area of work can be stressful and sometimes the stress does flare me plus the other wonderful issues we have to deal with when you have RSD plus I also have PN.

Good luck,

Gabbycakes

I wish you the best. If you are considering going to HSS and have any questions please feel free.

Gabbycakes

Originally Posted by debbiehub

Gabby,

I agree with you about the HSS- I had my 5 day ketamine infusion and they were great! But besides that what else can they offer, Dr Richman did my procedure.

Deb

Originally Posted by CZZ74

HI Deb, Well Ive met you- seen you and i think you do have rSD -how frustrating I mean for Gods sake you've been feeding your family off of paper plates for what 5 years now, i am so frustrated for you. I went to a pain management doctor not to long ago that wanted to question my rsd too.This is after all my suffering -the coma treatment etc. I mean give me a break, yes i wish, of course i did not have RSD as you do , but as usual he didn't have another reason for my lesions, full body pain etc. so please do not put too much weight in this , its happened to me too. I m very sorry this has happened to you. its so upsetting. my best to you Deb. cz