I am so sorry that you have to go through this. I am an RN and my husband has had 10 years of RSD symptoms and was only diagnosed 18 months ago. Needless to say, his RSD is quite advanced. There are many doctors who haven't a clue, but will never admit it. Because they don't have the quick fix, they sometimes want to blame the patient. My husband was sent to a behavioral psychologist since his doctor thought his symptoms had "A stong psychological componant." fortunately the psychologist who is also a professor at Colorado University said that the only problem was that his pain doctor was not adequately treating his pain. We then found a wonderful doctor - Daniel Brookoff in Denver and commuted 70 miles to see him. Dr. Brookoff pulled out the stops with adequate pain medication including Ketamine troches and injections targeted to the spot of origin. Unfortunately, Dr. Brookoff's contract was not renewed and we lost a great doc. had one after that who only had half a clue and ended up with a doc who won't prescribe ketamine, but who is willing to listen and admits he doesn't know everything. He also is willing to listen to us re: what helps. And he prescribed desensitization therapy. There is hope. Take care of yourself. I went into therapy for awhile because I felt so helpless that I couldn't make things right and ended up very depressed. Somethings that seems to help is reading to my husband - it's a distraction and he says it helps focus and feel calmer. it also gives us something to talk about other than the pain. Best wishes to you. shame on those nurses - they should know better. Don't let them wear you down.
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Originally Posted by BabyLeilani
Sorry this is so long! I just haven't vented to anybody for so long. I am new here.. My 26 year old husband has RSD on his right hand/arm and is currently an in- patient at a DC hospital. His Pain management doctors aren't much help at all. (And yes I did say "doctors" as they keep trying to pass him around as they don't know what to do with him.) He is currently the only patient in their hospital that has the highest dosage of medicine due to his pain (Oxycodone 10mg, MS Contin 60mg, Hydromorphone 4mg, Lyrica 100mg, Baclofen 10mg, Verapamil 80mg) Most of his nurses keep accusing him of being a drug addict and he's far from it. One of my questions now is: Is this too high for any of you or sounds about right? One of his pain management doctors is trying to lower his dosage to about half and I'm a bit concerned with that as he is in enough pain as it is. I'm also pretty sure that one of his past doctors mentioned that his current dosage isn't high enough for liver damage. I would like to know exactly what is the harmful amount just for knowledge?
Also just to vent, we went into his appointment a week ago to get his stitches out (to loosen his tendons on his fingers) and one of his PM doctors came in to tell him there is nothing more they can do for him besides amputation. She told him the only thing he can do for his self is to force his fingers to move before they tighten up again. And she literally grabbed his hand right there (with the knowledge of his burning pain and that he just got his stitches out) and screamed at him to move it. My husband was so overwhelmed with pain that he started crying as she held it forcibly. I started to try to reason with her and tell her to please give him a break or atleast some kind of sedation/medication before she does that. She screamed at me and told me to stop it, that this is what he needs to do. The other two doctors in there literally got quiet but didn't do anything. I know he needs to move his fingers but was it necessary for her to scream or to hold his arm/hand in such a manner? Isn't that the job of his physical therapist anyways?
I need advice/ support as I have no idea what to do anymore. I feel like he is being mistreated in his current hospital. Is there also anything we can do about the pain management doctor that I've just vented about? She is also his main pain management doctor and the lowering of medicine dosage is her idea... And I'm getting overwhelmed. I just hate seeing my husband cry (which he's been doing this whole week in his in patient stay at the hospital). He used to have such high pain toleration before his RSD diagnosis because he was in the Marines.. and when he cries I know it's intolerable. His pain scale has been a high 9 and 10 this whole week and I want it to atleast go down to a 7. (With nerve blocks it has gone down to a 4 except they're very limited with nerve blocks and it usually only lasts one or 2 days.) I'd also just like to ask if there is any other thing he can do for the burning pain as they're trying to lower his dosage?
Overwhelmed wife,
Sam
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