[Grettas3]

Hi,
I have been lurjing and reading but have never posted anything untill now. My husband was injured at work in july 2009 and ended up having rotator cuff surgery repair done in December of that same year. He wasn't healing like expected and had terrible pain and was diagnosed with CRPS.

He was sent to a pain management doctor who has put him on Neurotin(sp?) and percocet for the pain. They tried to give him all different types of pain drugs but everything else seems to freak out his system and he gets agitated and mean and feels like crap. After a few months on Neurotin he wasn't getting much relief and was sleepy all day...but couldn't actually sleep. He would be up untill anywhere between 2-4 am then sleep till noon.

He was switched to Lyrica and was up to taking 4 of those per day, then he had chest pain with sweating and felt dizzy and would fall asleep in the middle of the day but still cant sleep at night. Since these side effects have been happening he has gone down to 3 lyrica a day and will take the percocet in the evenings at about 5 pm and again about midnight. I used to wake him up to give him a percocet at about 8 am every moring to help keep the pain under controll during the day and also to help him sleep a few more hours. He hates that I do this...he doesn't like the drugs but he is in so much pain and a bear without them.


He is only 41 and I feel so horrible for him, I wish I could help make him better. Do you all think he should keep taking his meds in the morning or is it ok to skip them? I feel like he may make it worse but letting his pain get so bad that his brain will react by making his CRPS worse. Is that possible? I have been reading so much online about this disease but everyone has a different oppinion its confusing...any help would be appreciated!
Thanks!
Gretta

[finz]

Certainly, it can be more difficult to get control of pain if you are playing catch up, but waking someone up to take their pain med doesn't make a lot of sense in this situation. If he sleeps that poorly, surely he must wake up to toss and turn or go to the bathroom between 4 and 8 am......Why can't he take a pill himself then ?

Does he really get 8 hours of pain relief (or decreased pain) ? Everyone does metabolize meds differently, but everyone I know who's taken Percocet say it lasts 3 to 6 hours.

Other things to consider........

Without hounding him, I think it's a good thing to encourage him to use his pain med (if needed) as often as he can per the prescription. I think some people try to be too stoic.....and not use their pain med unless the pain is severe. No one's body needs that kind of stress. Taking the pain med for "only" moderate pain might make him a lot more pleasant to be with and let him enjoy his family more.

That said, also try to remember that chosing to take or not take pain meds might be one of the few things he gets to control. His body isn't listening to the instructions he's giving it. He can't control his pain (even with meds), he can't control his sleep, I'm sure this means some loss of income so he could feel he can't provide for his family. Some times, you have to let him control what he can.

There.......Didn't that make it all even more confusing ?

Hang in there. He is lucky to have a supportive wife who is trying to learn how to help him best.

[daniella]

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

[keep smilin]

Originally Posted by daniella

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

[Grettas3]

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...

[loretta]

Originally Posted by Grettas3

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

[Dubious]

Originally Posted by Grettas3

Hi,
I have been lurjing and reading but have never posted anything untill now. My husband was injured at work in july 2009 and ended up having rotator cuff surgery repair done in December of that same year. He wasn't healing like expected and had terrible pain and was diagnosed with CRPS.

He was sent to a pain management doctor who has put him on Neurotin(sp?) and percocet for the pain. They tried to give him all different types of pain drugs but everything else seems to freak out his system and he gets agitated and mean and feels like crap. After a few months on Neurotin he wasn't getting much relief and was sleepy all day...but couldn't actually sleep. He would be up untill anywhere between 2-4 am then sleep till noon.

He was switched to Lyrica and was up to taking 4 of those per day, then he had chest pain with sweating and felt dizzy and would fall asleep in the middle of the day but still cant sleep at night. Since these side effects have been happening he has gone down to 3 lyrica a day and will take the percocet in the evenings at about 5 pm and again about midnight. I used to wake him up to give him a percocet at about 8 am every moring to help keep the pain under controll during the day and also to help him sleep a few more hours. He hates that I do this...he doesn't like the drugs but he is in so much pain and a bear without them.


He is only 41 and I feel so horrible for him, I wish I could help make him better. Do you all think he should keep taking his meds in the morning or is it ok to skip them? I feel like he may make it worse but letting his pain get so bad that his brain will react by making his CRPS worse. Is that possible? I have been reading so much online about this disease but everyone has a different oppinion its confusing...any help would be appreciated!
Thanks!
Gretta

Hi Gretta,

Very sorry to hear of your husbands complications. I had shoulder surgery that led me down the same road your husband is now going, mine being 2 1/2 yrs ago. Very similar scenario and issues. You can PM me, if you like, for more specific thoughts.

[Grettas3]

I can't believe how much better I feel reading all of your replies, I felt so alone in all of this like no one understood what my husband was going thru. I don't know why I didn't speak up earlier.

We are in california and my husband has a horrible pain doctor..all he does is push drugs on him. He even started speaking with a psychologist and all he seems to focus on are my husbands drugs too! Unfortunately we are very limited in the choice of doctors because he was injured at work and this is all thru workers comp...another battle we have to fight. I do consider him lucky in the fact that the workers comp hasn't denied any treatment yet and they seem to accept the fact that his injury has resulted in CRPS which I hear can be tough to prove. My husband does have a tens unit and we use it although he can't tell if its doing anything. He has also been thru about a year of phys therapy..some for the shoulder injury and some with a specialist that does rehab for CRPS patients only. The good news is that our lawyer requested that he sees a new doctor and yesterday we heard from them that he is going to be able to meet with her in 2 weeks...I am very grateful that we have a very aggressive lawyer who has dealt with people suffering from CRPS and they know who to see and what to do. Its all so confusing because there is so much grey area with this disease....no black and white. What works great for someone doesnt work for the next person, my dh feels like a guinea pig sometimes. For example when he was on neurotin and his dr told him to try Lyrica...he was told not to mix the 2 drugs that he needed to taper off of neurotin they try the Lyrica...so he gave the neurotin one more month to see if it would help. Then he goes back to the dr and he tells him to take both! I was like WHAT?!?!? That makes no sense, good news is he wont be going back to that dr anymore, when someone is miserable and counting on their dr to help them the least they should do is be consistant with their facts. We have learned to forget about the so-called bed-side manner...I think that once drs go thru their residency they throw that all out the window.

Anywhoo enough complaining...I did find a great article that someone had posted on here about pain and the long term effects it has on a persons system. The whole fight or flight response that someone goes thru and it has helped me to explain to my sweet hubby why his body needs this medicine. We have 3 kids , one is still very young and she needs her daddy for a very long time still and he is determined to do what he can to keep a normal household for her. Im hoping that once we go see this new dr and she explains (yet again!) that he really does have CRPS that maybe he will be more willing to accept this diagnosis and start fighting back. Good thing that he is a stubborn as they get and once he sets his mind to something he doesnt give up!

[mjl1261]

Hi Gretta.

I don't know how your husband feels, but I DO know how you feel. My husband has CRPS in his hand (currently in remission) and I know what it's like to have a household where one member is in constant pain. I know that helpless feeling. My husband reacted differently than yours -- he got very quiet and withdrawn rather than be a bear. Not sure which would be more difficult to take, frankly...

One thing we did that helped me is, I went to his PT sessions and learned how to participate in his exercises. We did them every single night, even Thanksgiving and Christmas. Since his is in his hand, it was fairly easy for me to help -- don't know how it would be with the shoulder but you could look into it.

Anyway, it's just a thought. It was a way for me to be involved. I wanted to help and this was one way I could. I think it was a contributing factor in his not having the allodynia that so many others have, plus I think it made him feel like he wasn't alone with his condition.

Good luck, Gretta. Hang in there!

[SandyRI]

Dear Gretta,

I also suffered a work injury to my shoulder, and had rotator cuff repair surgery. But when I couldn't get better, I let them do a 2nd repair ("debridement") 50 weeks later. What a mistake! Your husband is lucky that his RSD has already been diagnosed. I was diagnosed 6 weeks or subsequent to the 2nd surgery, but probably had had RSD for quite a while. My RSD spread from my right shoulder to my neck and my head and then through my right leg.

The sooner RSD is treated the better the outcome. After lots of different meds (I threw the Neurontin and Lyrica out after a few weeks on each - YUKKK! - Topamax has fewer side effects for me), about 200 units of PT, triggerpoint injections, 8 stellate ganglion blocks, a lumbar block and 8 lidocaine infusions, I finally started receiving low dose outpatient ketamine infusions in April of this year. Ketamine helped me get back to work after a one year LOA. I still get sick, but not as often. And I am off the heavy opiods.

Good luck to you and your husband. I really hope you find the treatments that work well for him.

XOXOX Sandy