Quote:
Originally Posted by Al1952
Hi,
My name is Mary. My husband was dx with RSD/CRPS in August of 2009, so even though we are new to this, I can tell it is going to be a battle.
He had shoulder surgery in May of 2009, therapy, then RSD in his left hand, arm, and shoulder. It has since moved into his chest and back. Now it is going onto his right shoulder, arm, and hand. He cannot lay down, has been sleeping in an office chair sitting straight up for the past year. He cannot even sit in a recliner because it puts pressure on his back.
We live in Ohio, south of Canton. We have already been to different doctors (confirmed by 5 Dr's) tried a ganglien block which they could not do because he cannot lie flat. Did a interscalien block which made it worse, electrical blocks of some kind, which made it worse, Went to a RSD clinic at Univ. Hosp in Cleveland, but after 4 visits told him they cannot help him because he cannot lay down ( which he told the Dr. on the first visit). He now has edema of both legs, and stasis ulcers of both. Our attorney is supposed to be working on connecting this to the RSD for Insurance (comp) purposes.
We are trying to find someone to help. Any suggestions? This clinic just gives him vicodin 10's and says come back when it needs refilled.
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Hi Mary, I can understand your worry overy your husband's health. It is common for RSD to spread-I have it full body and internally-15 years. There are other medications that help with nerve pain so a person can minimize vicodin. I also take vicodin. Anxiety is part of RSD as it affect the Limbic part of brain I take lorazepam for anxiety, thus it calms me down and lessens pain.
Also depression is a part of RSD, Cymbalta also works on nerve pain and helps with sleep. Insomnia is huge for RSD and unless we get good restorative sleep, that increaases our pain. My Dr. who is a internist, neurologist, psychiatrist, pharmacologist, and others areas, does trial studies for pharmaceutical companies and teaches. Seroquel XR -he did a 200 person trial study for fibromyalgia and found it worked well for sleep aid. He put me in the study as my ambien cr quit working completely. Seroquel 150 mg. helps me sleep 10 hours a night straight. I am so grateful and . RSD is an autonomic condition so our blood pressure is affected - I took two meds for that. I check my BP because if it gets too low, we can pass out, which has happened to me.
RSD affects our immune system, involuntary organs like the heart, lungs, bladder, kidneys etc. Also affects our body temperature, thus the sweating and even ice cold. Most of us do best in warm dry states. Many have moved away from the rainey, cold, snow states to the warm dry climate.
Hope the best for you and your husband Mary. My Dr. has been researching ketamine and feels there is progress in that area for us. Also HBOT has beneficial to some.
I live in Scottsdale,AZ and love the weather except for the heat in summer. I just stay inside for the most part.
Take care and hope the best for you both. Dr. Swartzman is a well know RSD Dr. He was among the trial Drs. here in Scottsdale at the Mayo Clinic for trial of ketamine. He has excellent reputation. One of my girlfriends was an assistant to the 5 Drs. involved in the trial. I'll write more, as my Dr. is researching more on ketamine. He also has two new clinics with HBOT in both of them. Good thoughts to both of you, one of your new friends, loretta with soft hugs
