Hi I am sorry your husband is struggling. I know this also has an impact on you as well. You are a good wife to research and support him. There are many other meds to try so I would suggest your husband talking to his pain doc about trying others that could give him relief but also allow him to function better. Has he looked into other types of treatments? That I would suggest as well. How does he feel his pain doctor is? I have tried so many meds like neurontin etc. Some it was about finding the right dose and gradually increasing. Some were not the right med for me. It does take time.
As for the approach with your husband I guess I would encourage you to ask your husband how you can help him. I know this impacts you too and I know when my pain is high I am not pleasant to be around. I do feel when someone asks me what I need from them and does not push me that works better. Everyone is different of course but I feel that rsd and the pain makes me feel like I have no control of anything so in the ways I can have some control it makes me feel better. Is your husband on board or able to also take initative in researching what may help him? On the days he feels up to it it may help him feel better about having a plan in getting to a better place. Hope I made some sense. I am going on lack of sleep for many days. So sorry if I am not. Wishing better times for both of you

Good morning....

I can not share much insight on the medicine inquires as I am not able to take medicine for my RSD pain... I have a very bad tummy so I am cold turkey RSD..Some call me strong..I call me crazy!! But I would like to say this control feeling is big..RSD robs us of so many things in our lives...our health, our future as we once thought of it, our friends and families (at times), our livelyhoods, our $ flow, our control and decisions of what we would like vs. what we need to do, we are driven by our pain and RSD..daily and always!! I wonder if your husband was more involved on the pill planning.. educating himself on RSD (online reading).. walking himself thru this illness then teaching others around him about RSD AND how he fits into this disease, take ownership of it..it may be less stressful for him and less on you for being the 'bad girl' in the long run....Kinda approaching it from a different angle.. This is no pun to our men but as women we are natually the neutraers.(bad spelling, sorry).. we want to fix...!! Our families, our lives....but this can't be fixed nor cured only managed..mostly it has to be by the patient..only we know the extent of our pain and feelings..No doubt this disease throws a huge monkey wrench into our lives and those we love..it is such a strange twist on life..one we hold at an arms length in accepting but in time we all have to accept it and try our best to live with it the way we the patient can..mold it into the 'new' us!

Iam so sorry for you and your husband..We can all relate here..We are family and are waiting in the wings to help you!!!

Hugz, Kathy

THANK YOU ALL! I knew you would be able to help me.

As far as my DH goes, he is still in the "Maybe its not RSD\CRPS" stage... thinking that its something the doctors may have missed. He isn't at the point where he reads anything online about this yet..kinda in CRPS denial if you will. As far as the meds go I dont want to seem like a controlling nag...but I refuse to let him get worse because I didnt do all that I could to help him which is why I want him to keep his pain levels low. Im afraid that if he continues to let his pain get out of controll like he does that his nervous system may over react and his CRPS may get even worse. I dont know if thats even the case...but its not going to hurt him to take his pain meds.

I dont expect him to ever go back to work, he seems to be in far too much pain to continue the job he was on. I have always been an at home mom to our 3 kids..and as of now I still am but I dont know how long that will last because as soon as the workers comp ends we will need an income. Hopefully his meds will be sorted out by then and he can get back on regular hours.

His orthopedic dr. had him take another MRI just last week and we go in on monday to meet with him about the results. He already knows he has a frozen shoulder and I am very concerned that he may be subjected to another surgery. I have read here on this site that people with rsd are considered "no touch" patients so Im worried about the effect of another surgery.

Anyways, thank you all again...any advice I can get is so usefull to me and my husband

Big hugs to you all...

Hi Grettas 3, I've had RSD 15 years, starting with surgery for breast tumor and immediately followed with frozen shoulder. Dr. referred me to a rehab doc to oversee the physical therapy. It was tortureous, but absolutely the way to get range of motion back. It took nearly a year, I took pain meds before the pt and did an hour of massage therapy to loosen everything up. I am so grateful I did this... 1/2 way thru, they wanted me to have surgery to break loose my shoulder. I said no, I'll stay with pt. I didn't know for 4 years that I had RSD. After the year, I was so happy to be over the therapy and have use of my arm again. The therapist did tell me that it is possible that the frozen shoulder may go over to the other side. About a year or so later, I did get it in the other shoulder. But that year of remission was wonderful.
I did more pt in other shoulder and it didn't take very long to get full range of motion back. Another remission. for at least a year. I was water skiing and felt a pull in my hand-Dr. misdiagnosed me, I felt he was wrong so went to a good hand Dr. and immediately diagnosed me with rsd. and test confirmed it.
More therapy and only got partial use of my hand. It's frozen like a claw. but can cut my own food etc. The pt started too late to get full use. The rsd moved to other hand and lower body-actually have full body now and internal. I am 62. Very grateful to a wonderful neuro/psych helped me adapt.
You know when you have surgery, the nurses at hospital suggests taking your meds. Taking pain meds actually relax your body and helps your body heal faster. Pain tightens everything up and slows progress. So even though we don't like taking pain meds, it's actually helps us deal and heal. There are other meds that work on nerve pain that help me. I take lorazepam, an anti-anxiety med. RSD causes anxiety. so this drug helps cope and I actually use less pain meds. Also some anti-depressants help with nerve pain, so I take cymbalta and that also helps take less pain med. Sleep is imperative to help heal. Restorative sleep is a must. My Ambien CR quit working and my Dr. was doing a trial study of Seroquel XR for fibromyalgia and found it helped some people with restorative sleep. The study my dr. conducted had 200 patients and he added me to it. I sleep 10 hours straight. I take 150 mg. of seroquel.
I'm so grateful now. I was able to lessen my pain meds. I had been to as much as 6 vicodin a day and 8 during a flare. plus 8 mg of lorazepam. 2 drugs of anti-depressants. After the seroquel and sleep, I was able to go down to 4 viodin and 4 mg of lorazepam and 1 anti-depressant of cymbalta 120 mg. My Dr. also is a pharmacologist, and internist, and is certified in HBOT.
One important thing during therapy is to counter sensitivity to fabric etc.
They had me use 5-6 plastic bowls with different textures, like cotton balls, beans, sand, rice, and put hands and feet into these textures. Also the Dr. that diagnosed me order a Tens Unit which helped as a distraction of nerve pain. Insurance pays for the Tens Unit and the replacement pads.
My Dr. now is working on a compounding formula for skin lesions, dots, that are painful and are different parts of legs, arms, scalp, It's a gel. It will have ketamine, lidocain, and anti-inflammatories in it and I don't know what else.
I may be able to get a contact for you in Ireland.I"ll Private message you.
I live in Arizona, married, with married daughter & son in law.
Stay with us. There are many compassionate and knowledgable friends here. Take care, one of your new friends, loretta