Sex, sleep & Fibromyalgia

Sex
I would like to hold as serious of a discussion as I can about fibromyalgia and how it has effected my sex life and see if it is typical of other experiences and what techniques or ideas you have come up with to make it less painful. I hope this is an appropriate discussion for this website.

I think that when your nickname is vague about whether you are male or female you should state it at the beginning of each of your posts. It is my understanding that fibromyalgia strikes more women than men and since I am a man I am particularly interested in the man's point of view though I also want to hear from the women.

The first time I had an orgasm with fibromyalgia I called it "The Agony and the Ecstasy." It was the strangest feeling, definitely not pleasant. I am 54 not really old, but certainly not young either. I bring that up becauseIand instead of getting a pleasant feeling I felt pain  not unlike the times that I have accidentally got soap up my Urethra and then when urinating I got a burning sensation. I decided that unless there is some cure for Fibromyalgia that I was going to avoid orgasms.

Now the challenge is how to enjoy and satisfy my wife who does not have fibromyalgia. My problem is that resting on my left elbow hurts my left shoulder and my right hand fatigues and hurts soon after  which works for both of us but not ideal for her. That just leaves the shoulder pain which starts immediately so I guess I need to experiment with different positions that are more comfortable for me or just pay the pain price.

Sleep

I understand that sleep problems are common with fibromyalgia patients. For me I can only sleep 2-3 hours

Laying flat on my back causes intense pain in my lower back despite putting pillows under my knees) This pain is one of the reasons why I don't and can't sleep with my wife in our flat bed. Also in the middle of the night I would naturally roll over on my side and the pain in my shoulders would wake me up giving me a very uncomfortable and unsatisfying night of sleep. I sleep in my recliner which does not produce the lower back pain and it is very hard for me to unintentionally roll over in it. I try to make up for not sleeping next to her (kissing, light hugging, light stroking, and kind words about how beautiful and sexy she is)

By the way one theory for the cause of Fibromyalgia is related to sleep or REM deprivation. Both my wife and I have sleep apnea and use CPAP machines and get as good of sleep as when we did not have sleep apnea. This theory came from a phone call I got asking me if I was willing to do a study to find out if there was a connection. I was going to do it but they said I would have to not take my pain pills.

My wife (Joanne) puts all my pills in a weekly tray that allows for 4 sets of pills each day. Every day is the same. One week she ran out of my pain pill and she assumed that I was taking Monday's pills on Monday etc but instead since every day was the same was taking them left to right. So unknown to either of us I did not take any pain pills for 2 days. After the end of the second day I told Joanne that I was seriously thinking about to the first time I had even considered it in my entire life- that is how bad the pain was. This caused us to examine the tray and find the problem. She did not tell me that we had temporarily run out. So, getting back to the study I told them no way I could not take my pain pills.

Just yesterday I told my Dr. that I was having sleep problems (I have just been sleeping from Midnight to about 11 the next day off and on to go to the bathroom, eat breakfast and just because the pain or simply having Fibro. woke me up. He prescribed something but I don't have the name with me. It seems that there are about 3 different options which you can take and they are not addictive (you can take them every night). I will post the medication as soon as I get it (later tonight).

Sorry about the long post and thanks for your advise. I'm also sorry it has been so long (1 mo?) since last posting.

Love to all

Coach Patrick

PS. I have been stretching and trying to stay as active as I can and stay out of Dina the Reclina as much as possible but she is so nice to me. I have found that if I am active during the day and put up with the pain by taking regular Dina breaks when the pain hits that in the evening my legs do hurt less than if I sit in Dina all day.

I have also decided to pretend I'm John Wayne and teach a chess class to adults to help prevent Alzheimer's despite the knife-in-the-back pain that I will have for the rest of the evening. Yeah!

Patrick, I had to edit this due to rules # 1 and #2.

Sherrine

Post Edited By Moderator (Sherrine) : 10/20/2009 11:23:56 AM (GMT-6)

Hi Coach,

I am a female and as such, have not experienced what you've described but certainly understand your anxiety and concern over this. What popped into my head while reading your post was, is it possible for you to lie flat while your wife is on top (um trying to be as delicate as possible here). Other thing is lots of pillows in areas where you have pain or taking your pain pill immediately before. Have you seen a urologist (for the pain/burning)? And a sex therapist? Seriously, I would think they would have some recommendations for you.

I wish you well,

Miriam

Well first of all pain during orgasm is something that needs to be evaluted due to other medical issues that can be causing it. In the meantime a sex therapist might help with finding alternatives for your wife (and you) from liberator wedges to various forms of B.O.B. (there are many people who go to sex therapists due to medical reasons).  But I absolutely think you need to have pain this medically evaluated no matter what.

Thanks all for your replies. Sherrine thanks for the edit. I'm not sure exactly when I'm going over the line so feel free to edit. I tried to use medical terms. I understand why and I did not know that there were visitors that young.

My Dr. did a physical and could find no other reason for the pain though a specialist might be a good idea. For several years no my desire for sex has been very low and my Dr. said my testosterone level was fine. When I met with the Dr. I absent-mindedly shook his hand and it was quite painful. This is kind of an analogy of my sexual problem. A little bit of pressure on the hand feels fine, a firm handshake feels like he had one of those old fashioned joy buzzers in his hand and it hurt. Since nobody else has or is willing to admit that orgasms hurt, then I will go see a specialist.

Does anyone else sleep in a recliner finding a flat bed too uncomfortable no matter how many pillows are used? Maybe one of those adjustable beds that bend like a recliner would be ideal, but we don't have the money living paycheck to paycheck.

Thanks again to all..

Coach Patrick

Can you define what "Flare" means? Everyone keeps using it but I don't know the definition.

Thanks!

I like sleeping in a recliner.

It might help if your doctor gave you a muscle relaxant, like zanaflex. It is hard to take during the day but it a great sleep and pain relieving aid if you take it about one hour before bedtime. the arthritis foundation offers advice on sexuality and pain, check out their website. good feelings.

donnaeil

Dear Poodles
That makes sense to me. Do you feel the pleasure is worth the pain? I find myself thinking of an activity like a scale where the pleasure of doing the activity goes on one side and the pain of doing it goes on the other side and the scale has a big input into whether or not I do the activity. Since I am a coward, I pretty much don't do the things I would like to do because there is too much pain involved. I would love to teach chess but by the time I get my clothes on I'm in too much pain and fatigue to drive there.

I'm female but I have suffered with painful intercourse my entire life. The "moment" is not typically painful, however the other pains that I have distract me & keep me from getting there.

I'm sort of the controller in that area and I believe it is bc of the pain. My husband and I managed to have a good average & work with each other well but I had a period of about 6 months where relations were out of the question.

So, my husband is very gentle w/me. of course I let go sometimes, but not frequently.

For me, the pain afterwards & during is worth it. But my husband has dealt w/this our whole lives so he knows that it really hurts & he can't put weight on me or do other things that most people would never notice.