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

So sorry to hear your and your husbands story, Sam. Glad you found us here. My personal advice is RUN!

I live on the Eastern Shore of MD and have had a very hard time finding a good PM doc who has any real knowledge of RSD and therapies to help. I'm only about 1.5 hours from DC and it's not impossible to travel that far for treatment. I recently found a wonderful PM who is not afraid to try contraversial treatments for me. My former PM was two hours away and told me there was nothing more he could do for me. Also said that it was my fault that my RSD (left leg and hip and butt) is this bad because I did not do what he told me to. (Walk backwards on an inclined treadmill). I can hardly walk at all, mind you. So, basically I was driving four hours for a five minute med-check. (All along not being able to stomach the narcotics and getting violently sick at any given moment). Only to get yelled at by him every month. The stress alone from going to see him made my pain horribly worse.

Well, I finally found one who understands. He said that he understood the effects of RSD after he had a bad case of Shingles. In the past two months that I have seen him, I have started a whole new regimen on meds, nerve blocks and even Ketamine. I am still in agony, but I see light at the end of the tunnell. Please don't give in or give up. Your husband and you deserve to be treated with respect. Try to eliminate the idiots and keep searching!

I can give you some names of the good doctors that I use. I really think you should find a more compassionate and educated group of doctors. Also, Jimking, whose wife has RSD lives in VA and has some wonderful resources. He has helped me more times than I can count; and he is the spouse of an RSD'r and you two could probably really relate.

Sorry I am not more help. Please remember that we are ALWAYS here for you and your Hubby. Welcome to a very loving and caring family.

Please keep us posted.

Your new friend,

Kim

Sam , I too would be looking elsewhere as this is a long road we are traveling and to me , trust in the competence of your doctor plays a big roll in the process....No one (patient or caregiver) deserves to be treated in the manner you stated . I would take advice from people in your area and go from there . As far as the liver levels go make sure you have a base line liver function test and then be tested as required (I get blood work every 6 months) . Best of luck , and hope your husband finds relief soon . Take care !

Sam,
NO that is not a high dosage right after surgery!!!! I had my wisdom teeth out, and I took 6mg of of hydromorphone every 3 hours for about a month, I am slowly teetering down. I take 60mg of baclofen a day, lyrica you can go up to 300 and that is totally NORMAL for a pain patient. I am on 1800 mgs of neurontin. I also have a fetanyl patch which is 25mcg. Also methadone 5mg 4 times a day. I am 20 so him being 26 there is no reason they can't up it unless he has bad side effects. I understand the being young and feeling lost and helpless.

Ask for the chief head pain management doctor, and sit down with him or her, and if they know RSD they know that is NOT too much. Especially if he is inpatient at the hospital, they can monitor him and up his dosages until this vicious pain cycle tops after surgery. I have done surgery 4 times after RSD and have to do it again in a few months. I understand the uncontrollable pain. a heat pack might help him relax the muscles. This is ALL NORMAL RSD stuff you/your husband are going through. They should NOT TOUCH HIM, until he is medicated enough so it does not flare anymore than it is. Hang in there, and find other help. Look for anesthesiologists, or neurologists in the hospital that deal with rsd. Maybe go down and try to find somebody that can tell you which doctors deal with which diseases, you have the right to have a consult with whomever you need. Dont stop searching for a doctor. you can do it! He needs you to be his rock right now and so he knows you are fighting for him. Try not to pity him (thats the worst for me) Never give up, and talk to the doctor outside of the room to get his attention or ask him who treats RSD. Keep going, and make sure you eat and get a little nap in here and there so you are rested. Write down a list of questions you have for the doctors, and what you expect out of them, so when you do talk to them it is business and there is little emotion so you can get the point across but know exactly what you need answered. My mom is my rock and has helped me through so many bad times, these are just a few of the things that she has done that I thought I'd share with you. Your husband and you are in all of our prayers for strength, and to give the doctors the wisdom to treat and help your husband out of this agony. We on here have all been through that kind of pain... Feel free to ask as many questions as you need.

Hannah

Hi Sam,

First and foremost, amputation is not an option, they do not amputate any more for RSD...I am with everyone else, you need to run...get him out of there and figure something else out. Where do you live? There are many people here on this forum from all over the world that can give you names of doctors, good doctors. I am the mother of a 17 year old with RSD. I feel what you are going through, right now YOU and only YOU are his advocate...you need to make sure that everything is being done, and tell that doctor to NEVER touch him like that again. I had a similar thing happen when my daughter was first diagnosed and they said she was faking, and the doctor kept grabbing her leg. I told her to never touch my daughter again... she was only 15 at the time. But, has suffered with ignorant doctors since she was 11 years old. Let us know where you live and we can help find someone in your area. RSD is not something to play with. My prayers are with you and your husband.

Sandy

Your story is all too familiar to all on this forum and we all had wished we had ran a few times. I am so sorry you and your husband are being subject to this ignorance. I am grateful as I am sure your husband is that he has you. It sounds as though your husband is in a severe flare, NOBODY has the right to touch and twist, poke and prod during this time. They all have the cure but none of them have the disease. Get enough medication to hold him over and start looking for another doctor with knowledge. The medication is alot, but so is the pain. Until your husband can get traction, he needs the meds. As far as therapy and challenging the pain, with this disease, there is a time and place for it. Sometimes you just absolutely can't do it but the flares come and go (ease up) and then is when you can challenge the pain. Amputation for my right foot has been advised, but after gaining some knowledge from here, I just do not think that is something I am considering anymore. Six months ago I truly thought I could cut the pain away, I am so glad I didn't. The burning pain is the worst, and I don't think anyone has found a majic bottle for that, we just have to ride it out. I do use Ativan at night this helps me not care that I burn, I am just being honest. Hang in there and find a knowledgeable doctor. God Bless you both.

RUN as fast as you can away from this crazy doctor...since you have had services in DC, there is a great neurologist in Winchester VA (about an hour away from DC)that is wonderful with RSD patients. His name is Patrick Capone and he is near Winchester Medical Center
Ste A, 125 Medical Circle
Winchester, VA 22601-3300
(540) 667-1828

Good luck

Wow! I am so glad that you all understand. I am sorry that we share the understanding...BUT I feel better knowing that we know each-other well enough to trust and just, well, share.

Thank you, my friends!


Kim

OW,

Sorry to hear about your husband. There is not a soul here that doesn't "get it." I went from vicodine to vicodine ES to oxycontin and for which none helped. I too cried myself, not to sleep, but from bedtime to the wee hours of the morning. This went on nightly for about a month, worsening all the while, to where it really started to work me to the limit. I don't know why your husbands pain started, mine was from a shoulder arthroscopy gone down a bad road of complications. I saw the train wreck coming and sought a neurologist who suggested CRPS and underwent pain managment around 6 wks post-op. I am now somewhat controlled, sometimes, after 10 stellate blocks and at my early suggestion, switching to norco (less acetomeniphen) to keep from blowing my liver up along with a few other meds. The pain is never really gone but is not as it was pre-blocks. I think you are on the right road, being here with all the resources available, but the road is long and hard. You sound patient and understanding, qualities that I too am blessed with my wifes understanding and support during those unbearable days, frankly for which I don't know how I would have progressed this far without her. Hang in there, understand that his pain is real and not to be understood by anyone who has not walked in those shoes. Everyones experience is unique, but with time and proper care, it likely will get better, at least more so than it is now. I know it is hard to see the light when you can't find the tunnel, but it will come.

this is so dang hard .... your husband is very very young..Have faith and hold close to us here as we have seen and felt all of those feelings esp. the pain your husband is enduring. When you are the patient, you live for the moment doing everything WE think is right at the time..looking from the outside in..you NEED to take the informational contacts listed here and do your homework..Run from these Dr. bozos and make calls..Your husband and you deserve the best medical attention there is to offer...RSD does not change in its relentless uphill pain...but we learn to mold ourselves in order to " manage" our lives... the pain, the change, the new limits with this disease......Already your husbands has felt the horrible part of this disease... Get new Dr.'s and never stop learning...I only wish you had the opportunity to "yank" and "pull" on his Dr.'s while screaming at them to keep quiet!! DANG!

Nice to have you here with us and please..allow us to share in your heartfelt feelings...

Hugz, Kathy