[lostneedfound]

Good Morning (as its now 3:00 am) Sorry for the long post, not sure if this is the right place, but here goes...sorry for bad grammar too!

I am the husband of a wife with CRPS. We have been together for 15+ years, married for 10. (im 36, she is 32) We have 2 kids, 3 Dogs and like most typical Americans, a house, car, etc. Painting a picture, we are your typical family.

My wife was diagnosed approx 3 years ago. she battled knee pain but a bad hit from one of our dogs into her knee was the final straw. We went to see a knee doctor who mis-diagnosed her from the start calling it a fracture on the top of her fibula and doing MRI's to know avail or comfort. Needless to say, 6 months of pain and not stopping asking for answers, we are here today with CRPS. Atleast we had answers.

My wife refuses to let her CRPS control her. She still (by choice) works as a beautician 20 hours a week (standing on her feet mind you) She continues to do the house choirs and even partake in our kids extra activities (helps coach football and cheerleading) She goes to the gym every weekday morning to do 4 miles on an elliptical machine AND at night, literally almost every night. She believes if she continues to force the muscles and nerves to work, she has control and things will not get worse (spreading, loss of muscle, etc) and it helps with her blood flow and the sauna afterwords soothes the pain (dry heat). She takes Vicodin (multiple pills and multiple times a day) and on occasion Gabapentin (not often, she hates the mental feeling it provides). Overall, i would say she is tough as nails, strong as hell and a role model to CRPS sufferers. a true example of not letting the pain win. She is back to her highschool weight, looks amazing and thanks to the gym, is the best shape of her life.

So why am i posting here, well, the problem lies on how i am suppose to cope with her CRPS. I am the other side, the side that typically is viewed as the one that "doesnt get it, or "will never understand". Perhaps i am no more than an ******* and the realization will come from your feedback or maybe you can relate and provide me with valuable insight.

I can not talk to my wife about sex without her getting mad and defensive. I try to bring up conversations and explain how i feel and how CRPS is affecting me as well but she doesn't seem to care. I understand, the pain is un-imaginable, but i am not asking for what i think is outrageous.. i would be stoked with 2, 3 times a month? Its December, we have had sex 2/3 times since September. I know she is not cheating on me for that would appear to be the most obvious of answers (at least for me) Maybe this is a CRPS issue, maybe its not, and CRPS is just the blame. I dont know

She says she cant orgasm; ** i have even made sure i change my routine to ensure she finishes first. Again, i may not be perfect but i put her first and try no to treat her like a rag doll. ** She reads nightly to get her mind of the pain, while in bed, she reads a variety including romance yet, those spark no interest as well. we cuddle a few times a week but do you know how hard it is to cuddle when you constantly desire your wife? This is why i am here tonight, i had to get out of bed; i am angry with her she is ignoring my needs and using CRPS to blame when she is able to overcome everything else (i mean guys, she runs 8 miles a day on an elliptical for heavens sakes!)

So, even though i could keep typing for hours ill cut it there and ask the ultimate question. What do i do? How do i get her to understand, i am in this too, for as long as we both live? Lately crazy thoughts of divorce and infidelity have creeped in my mind and i talked to her about it. Her response to be expected was "I cant believe you are bringing this up" so i asked what can we do to try to make things in the bedroom normal again... sadly, she never has answers, she never knows, and i find myself lost, alone and wondering how i am going to survive like this for 60 more years while she suffers from a never ending battle of CRPS. IS this CRPS or is this a marriage problem with CRPS on the side. I ask her first giving the benefit of the doubt to CRPS.

I apologize if i offend anyone.
Feel open to ask me questions, i truly seek to make this work.

[BioBased]

You might want to seek the counsel of a marriage expert, because your marital problems require real world support.

Please search for and read "Spoon Theory." It may give you insight.

Gabapentin is not a drug that is effective if taken occasionally. For your wife's sake please research.

[visioniosiv]

My subjective opinion based on your subjective description, for what that's worth: Core relationship issues compounded by CRPS. Best to you and your family - none of this is easy.

[Littlepaw]

Hi,

It's great that you are reaching out for support and trying to be proactive about these problems. I would channel that motivation into finding a qualified therapist to work with you both on the issues in your marriage. Preferably one familiar with chronic pain who knows what CRPS is. Sometimes pain clinics have someone on board or have recommendations. The Psychology Today website has a database of providers by city and gives their practice interest. This is how I found the therapist who helped me deal with CRPS and the losses it can bring.

Your situation is legitimately difficult and it is to your credit that you are sharing the desperate thoughts of divorce and infidelity. Obviously things are messed up or you wouldn't be thinking that way. Both your needs are important. Going 60 years like this frankly sounds wretched and yes it is impossible to cuddle when sexual needs aren't being met.

I try not to judge others decisions about how they approach their CRPS, but a couple of things stand out to me. I question going to the gym daily to hammer out 4-8 miles on an elliptical. Is she hurting herself? Why is 4-8 miles daily necessary? This is a recipe for repetitive strain and I don't think many doctors, trainers, PTs or athletes would say that is a healthy way to work out, especially with a knee problem. Ellipticals are particularly known for causing knee strain. I applaud working out and do so myself religiously but avoiding injury is key and changing one's workout with different exercises and intervals is the way to do that. Taking days of rest are also important. Even people training for marathons take days off.

I concur with Bio that gabapentin is not a "sometimes" med. And frankly taking vicodin all day (and still having horrid pain before bed) to make up for what sounds like overdoing it, does not seem like a long term plan for staying healthy. Opiates can mask overuse, cause hypersensitivity and studies show that a cocktail approach to nerve pain is actually more beneficial. There are a lot of options out there. I switched to nortriptyline from gabapentin and do well, am less foggy and more upbeat and it helps with the nerve pain.

I am sure that CRPS complicates issues in your marriage (and your wife's priorities) but I personally don't think you can blame CRPS. Your wife sounds like she is doing an astounding amount of activity. Prioritizing the relationship is important. Physical intimacy is important and brings closeness and bonding. If your wife had pelvic nerve pain or pudendal neuralgia I would still say sex was important and should be addressed in a creative fashion that did not cause her pain. This is a partnership and there must be give and take for its long term viability.

Thanks for supporting your family and looking for help with these issues. I hope you are able to get the help you need and work things through.

[-Spike-]

Originally Posted by lostneedfound

Good Morning (as its now 3:00 am) Sorry for the long post, not sure if this is the right place, but here goes...sorry for bad grammar too!

I am the husband of a wife with CRPS. We have been together for 15+ years, married for 10. (im 36, she is 32) We have 2 kids, 3 Dogs and like most typical Americans, a house, car, etc. Painting a picture, we are your typical family.

My wife was diagnosed approx 3 years ago. she battled knee pain but a bad hit from one of our dogs into her knee was the final straw. We went to see a knee doctor who mis-diagnosed her from the start calling it a fracture on the top of her fibula and doing MRI's to know avail or comfort. Needless to say, 6 months of pain and not stopping asking for answers, we are here today with CRPS. Atleast we had answers.

My wife refuses to let her CRPS control her. She still (by choice) works as a beautician 20 hours a week (standing on her feet mind you) She continues to do the house choirs and even partake in our kids extra activities (helps coach football and cheerleading) She goes to the gym every weekday morning to do 4 miles on an elliptical machine AND at night, literally almost every night. She believes if she continues to force the muscles and nerves to work, she has control and things will not get worse (spreading, loss of muscle, etc) and it helps with her blood flow and the sauna afterwords soothes the pain (dry heat). She takes Vicodin (multiple pills and multiple times a day) and on occasion Gabapentin (not often, she hates the mental feeling it provides). Overall, i would say she is tough as nails, strong as hell and a role model to CRPS sufferers. a true example of not letting the pain win. She is back to her highschool weight, looks amazing and thanks to the gym, is the best shape of her life.

So why am i posting here, well, the problem lies on how i am suppose to cope with her CRPS. I am the other side, the side that typically is viewed as the one that "doesnt get it, or "will never understand". Perhaps i am no more than an ******* and the realization will come from your feedback or maybe you can relate and provide me with valuable insight.

I can not talk to my wife about sex without her getting mad and defensive. I try to bring up conversations and explain how i feel and how CRPS is affecting me as well but she doesn't seem to care. I understand, the pain is un-imaginable, but i am not asking for what i think is outrageous.. i would be stoked with 2, 3 times a month? Its December, we have had sex 2/3 times since September. I know she is not cheating on me for that would appear to be the most obvious of answers (at least for me) Maybe this is a CRPS issue, maybe its not, and CRPS is just the blame. I dont know

She says she cant orgasm; ** i have even made sure i change my routine to ensure she finishes first. Again, i may not be perfect but i put her first and try no to treat her like a rag doll. ** She reads nightly to get her mind of the pain, while in bed, she reads a variety including romance yet, those spark no interest as well. we cuddle a few times a week but do you know how hard it is to cuddle when you constantly desire your wife? This is why i am here tonight, i had to get out of bed; i am angry with her she is ignoring my needs and using CRPS to blame when she is able to overcome everything else (i mean guys, she runs 8 miles a day on an elliptical for heavens sakes!)

So, even though i could keep typing for hours ill cut it there and ask the ultimate question. What do i do? How do i get her to understand, i am in this too, for as long as we both live? Lately crazy thoughts of divorce and infidelity have creeped in my mind and i talked to her about it. Her response to be expected was "I cant believe you are bringing this up" so i asked what can we do to try to make things in the bedroom normal again... sadly, she never has answers, she never knows, and i find myself lost, alone and wondering how i am going to survive like this for 60 more years while she suffers from a never ending battle of CRPS. IS this CRPS or is this a marriage problem with CRPS on the side. I ask her first giving the benefit of the doubt to CRPS.

I apologize if i offend anyone.
Feel open to ask me questions, i truly seek to make this work.

HERE IS MY OPINION. I am no longer in the vocation of Pastoral Ministry. I'm now just a person with CRPS, who struggles greatly with my disease. I am no expert and don't claim to be. Having stated that, I will say this. I truly do believe that the issue here is not CRPS. But.. I will even include that possibility in my thinking in order to be fair to both of you. I counseled with Couples a great deal in the pastoral ministry. When women are turning to Romance Novels for their affection and intimacy it is a sign that they are fully functional and do indeed have active desires, which are longing to be met and shared. Something else is up. Here is what it could be.... 1) She is satisfied with the amount of intimacy that she is getting in the relationship and can't believe that you wouldn't be. Sexless Marriages are indeed a reality and they are not something that only occurs, because one gender has little interest in shared physical intimacy as opposed to the the other. Men can have just as low of a sex drive as women can and vice versa. Women can have just as low of a sex drive as men can. Also, both males and females can have high sex drives as well. Women and men are equally interested in intimacy. And both enjoy it. The population of the world is proof of that. In cases of Sexless Marriages, where one partner has a low sex drive, the other can either accept the situation as is, or get out of the marriage, if the situation is unresolved. Resolution would mean that the Spouse that is less interested in intimacy would have to be willing to be involved regardless of their lack of interest. If this does not happen the marriage is in jeopardy. Sex is a very important part of a marriage. And that is a fact. 2) She loves you but is not attracted to you in the way that you are to her. She works out and keeps herself physically fit. Do you? If not, you may want to explore a conversation with her about this and you may have to become as into fitness, as she is. Here the question from you to her would be, Is being physically fit her desire for you in order to stimulate her intimate interest in you? Work out buffs can be that way. They like to be fit and like their intimate partners to be as well. 3) She is looking for more, but doesn't want to talk about it, since this would disturb her family life, which is obviously important to her. 4) She is exhausted after investing herself in other areas of her life, while battling CRPS OR 5) What ever the issue is, she is not very open to discussing it with you. Yet, what ever is at the heart of this, it is serious & probably is not CRPS since she is overcoming the disease in so many other areas of her life. What she needs to realize is this. This is an important issue and may end her marriage if it is not discussed.

[EnglishDave]

You have received some very good advice from your fellow Members here and I have nothing more to add on that score. What I will say is you are doing the right thing by seeking answers and advice, many would have taken the easy route and walked away.

You deserve an honest response from your wife and, hopefully with Counselling of some kind, you can both resolve your issues.

Dave.

[lostneedfound]

I gathered a lot of insight and i am still digesting the great feedback you have all provided. Thank you for taking the time to provide insight, opinion, and advise.

This is a great foundation to build from. I will be back later to provide an update as i know there is someone else out there who may relate.

Thanks again and thank you for welcoming me.

[PurpleFoot721]

Everyone else here has already given a great amount of advise, and there is not much more that I can add. There appears to be something in the relationship that is bothering your wife and she might be afraid to bring it up with you. As mentioned before, counseling of some sort is a great idea, and as someone else has already mentioned, someone familiar with chronic pain, particularly CRPS would be preferred.

My husband and I have not been all that intimate lately as a result of being in pain from CRPS. He has been afraid that he might hurt me, and I have been worried about the same. It has recently caused a fight between the two of us, and until about two weeks ago, I did not know why. We are working through this on our own and trying to find ways that neither of us has to worry about the CRPS being in the way.

I consider intimacy a very important part of a marriage. If there is no intimacy, there is most likely some kind of problem standing in the way. I hope the two of you are able to figure out what that might be.

[Jomar]

#1 Some meds dull the pleasure senses as well as dulling the pain signals... so that should be looked into as mentioned by others, maybe a better mix of meds will change things.

#2 Exercise is good , but I do think it sounds like going overboard on it..denial of the condition? Sometimes things can compound into spreading which is a possibility..

# 3 All the exercise & activities is her "outlet"?? ( a convo for you and her)

I would look into a better combo of meds first..

[-Spike-]

Originally Posted by Jo*mar

#1 Some meds dull the pleasure senses as well as dulling the pain signals... so that should be looked into as mentioned by others, maybe a better mix of meds will change things.

This point right here is very relevant with the kind of drugs that we as CRPS patients take. In light of what the Original Poster stated, his wife may indeed be on some drugs that are hindering things. Thanks to you for posting this! I bet it is extremely helpful to the person who began this thread.