Hi all.. I don't post much but read everything...
My husband has had RSD for almost 6 years now and will never walk again because of it. His right foot and slightly above the ankle is the affected area.
He is also on workers comp for RSD (what a friggin nightmare) but last year the courts ordered a dr. change and his current doctor sent him to RIC for their 4 week program (a comletely different part of RIC not the world renowned hospital but the pain management clinic on north michigan ave in downtown chicago) for a tapering off his opiods. They are making him come completely off all opiods and we aren't really sure what his doctor here in atlanta is going to do for pain (we see him next week) but anyways I am just extremely curious as to others opinions/experiences with the CPM program at RIC.
Workers comp backed out literally last day to fly me and my 5 and 8 year old up to see my husband and attend the family part of the program so i put them in the car and drove the 14 hours to get there so I could meet with the doctor and psychologist and ask what I needed to ask and I really would love to chat with someone else with RSD that has gone there to see what they thought.
It took us 5 years to get to the point of my husband being able to physically get up every day and be a half way normal family then the court orders this doctor change and within a year we are 10 steps backwards with his ability to do anything which is what we were most afraid of. He has tried every medication, nerve block, ketamine, SCS under the sun and nothing worked except this one opiod he has been on for quite a while now and now he is forced to taper completely off it and be in pain 24/7 and it is killing me to watch and make my child children endure this
Sorry I went off on a rant but had to get it off my chest back to the main point
Please let me know thoughts on RIC and if you went there who was your dr at RIC...I can give you my email if you prefer to talk that way or even my phone number! He has a recheck on 11/1 and I would love others insight before that appointment and before my lawyer insists I go back there with him (how he is going to be able to fly with no pain meds is a whole other issue we are trying to figure out so I have to be with him or he will never make it)
Thanks so much!

I'm sorry about your husbands situation. I've never been to RIC but hope he will be okay and will keep you all in my thoughts.

Hi Tiffany, I suffer from RSD as well and feel your husband's pain I too bad to deal with workers compensation.....not fun. As for medications wc wanted me off pain meds and stopped paying, however my wc doctors supported my need for pain meds to function so I had to pay for pain medications myself but it was well worth it for my sanity and ability to function. I would fight for his medications and definitely stand up for his needs. I'm finally done with wc myself but it's a long road. I'd be happy to help if I can. Feel free to message me. I'm sorry your going through all this but don't give up. Your Husbands lucky to have you by his side! I was sent to a inpatient pain program in Oregon for couple days but I didn't end up doing their program. Hang in there and stay strong.

Hi again. I hope things are going better for your husband. I just wanted to let you know that my pm dr said that if I was in pain from my rsd and didn't take my pain meds, it could possibly aggravate my rsd. I just wanted to let you know in case you wanted to see another dr who may agree and give your husband the medication he needs to get by each day with his rsd.
My thoughts and prayers are with you both. Take Care.

I am so sorry your husband has RSD. Unfortunately some doctors do NOT know anything about it. To remove your husband from a medication that gives some quality of life is horrible. That is NOT what doctors took their Oath for. You must find a doctor who will continue to treat your husband.
You mentioned Ketamine. Did he receive infusions? If you post near where you live, perhaps someone on NT will have the name of a pain specialist that knows about RSD. Continued appropriate pain management is essential for a decent life. I will keep you and your husband in my thoughts and prayers. ginnie

He has literally tried everything....even iv ketmaine years ago at the shepard center here in atlanta. We live halfway between atlanta and macon. I have been doing a lot of research on dr. Chopra in RI and I hoping that is the direction that this dr.in atlanta is trying to go but still my husband ( we only got married less than 2 months ago but have been together over 10 for workers comp purposes) workers comp hates me. We have a pain managment dr. Appt tomorrow and I literallly have 30 pages of qustions concerns and statement for him and he is not leaving till he answers every damn one of them. My husband is in such pain it is unbearable...he was on 240mg oxymorphonr Er for 3 years with nevrr having to up the dose. Now the state board orders this dr. Change and in less than a year he has taken us back 50 steps which I told the new dr the first meeting we were first afraid of. He is catastrophic on WC too btw. Right now this week he will be down to 37.5 mg and it goes down every week. Then on 10/31 (so much for my 5 and 8 year old having a good halloween) he has to fly back to chicago on 7.5 mg....he had a horrible time fling at 105mg nevermind 7.5 a day...it is ridiculous. Right now at this moment he takes xanax for a nxiety, prilosec for stomach and remron and the low low doses of oxymorphone....his dr. Refuses to do anyth.ing else until he gets RIC recommendation on 11/1....oh did I mention of the 5 people I talked to at at RIC they all had the same workerd comp as my hubby seems fishy to.. me....

Also dr. Has recommended I go with him to RIC this time for physical and mental support but again workers comp hates me cause I ask too many questions. And research everything anf literally write everything down anyone says. So we will see if that happens....if not I will get in my car and drive the 14 hours each way like I did last time to make sure I am there to support my husband. I have hoped by now they have learned nothing will stop me from doing what I need / want to do whether it be 14 hours with a 5 and 8 year old in tow or me bymyself I will be there.
How a pain management doctor can leave a patient with rsd (6 years in the disgnosis nowz0 with virtually no pain meds is beyound me. He should have went in some other field of medicine. Did I mention dr. Office is a 2 hour trip one way for us and don't think for one second if something isn't done tomorrow I will drive the 2 hours each day and sit on his sidewalk or just off it with my sign saying what a shitty dr he is in leaving my husband in pain from one of the world most painful chronic disease know to man kind per the mcgill pain. Index scale....

Thank you for letting me know the history that you and your husband have had with RSD. Taking him off the medication in my opinion is torture. Unfortuately, I know several others dealing with WC, to the same outcome. These big companies are turning down people in medical need with bogus doctors, paid to turn them down. Maybe a lawyer would be a good direction to go in. You will have to go outside their group to get the help you need. Good for you to write down all your questions too. Don't walk from that office until you get the answers you seek. I too was weaned off morphine, in my case it was because I wanted to. I needed to see what I had left in pain after surgery. The weaning process alone is awful. Tell your husband not to give up hope. There are doctors willing to treat, that understand this awful disease. Your family will be in my prayers. ginnie