Sex, sleep & Fibromyalgia

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Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 10/20/2009 7:37 AM (GMT -7)   
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!
shakehead

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)


OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/20/2009 8:34 AM (GMT -7)   
I see you talked to the doctor some about the sleep problems, and that's a start. I haven't come across the pain you're describing during sex and I honestly think your best bet would be to see a doctor who is specially trained in the matter and has dealt with this type of problem before. No advice here substitutes professional medical advice.

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 10/20/2009 9:13 AM (GMT -7)   

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


Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/20/2009 9:21 AM (GMT -7)   

Patrick, I edited your post because it was far too explicit for a forum that has people as young as 13 on it.  If someone is willing to email you to discuss this, that would be the best alternative.  Thanks for understanding.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/20/2009 9:46 AM (GMT -7)   
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.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 10/20/2009 10:55:43 AM (GMT-6)


Jokat
Regular Member


Date Joined Feb 2008
Total Posts : 278
   Posted 10/20/2009 9:53 AM (GMT -7)   
Man here; No pain. You should go get checked out for another cause for this problem. I do not think it is the FM.

JoKat
 
Our attitude towards life determines life's attitude towards us. {Earl Nightingale} 
Fibro since 2005


Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 10/20/2009 12:05 PM (GMT -7)   
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
Fibromyalgia, sleep apnea, retinal detachment, gastric bypass surgery


Carnissa
Regular Member


Date Joined Jun 2008
Total Posts : 289
   Posted 10/20/2009 1:13 PM (GMT -7)   
patrick

for the sex.. i find that if i am in a flare and my fiancee wants sex i have to move all the time and not stay in just one position.. i find that a lot of the tantric positions are easier for me in pain.. just a suggestion... ( i am female so not sure on the male side of things) lots of pillows and heat after tends to help with the pain

hope that helps
Diagnosed - fibromyalgia 2001
Meds amitryptilene 30mg/day
Lyrica 75mg/day


Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 10/20/2009 2:23 PM (GMT -7)   
Can you define what "Flare" means? Everyone keeps using it but I don't know the definition.
Fibromyalgia, sleep apnea, retinal detachment, gastric bypass surgery


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/20/2009 2:54 PM (GMT -7)   
Hi Coach! A flare is when your symptoms pain, fatigue ect... really go into high gear,
you are hurting more than your usual norm. They can last anywhere from a day to
months. Stress, overdoing and the weather are some of the triggers.

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 10/20/2009 3:06 PM (GMT -7)   
Thanks!
Fibromyalgia, sleep apnea, retinal detachment, gastric bypass surgery


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 10/20/2009 3:48 PM (GMT -7)   
Patrick, I sleep in my leather LazyBoy recliner quite often. It cradles my body from below and from the sides in a way I don't think the adjustible beds would. I know that hospital beds, which are adjustible, absolutely kill me. I'm always up and moving around really soon after surgery because it hurts more to lie still than it does to move.
Judy
Co-moderator, Ulcerative Colitis
 
Diagnosed in 2001, finally in remission since March 2006.
Mesalamine is not my friend and steroids are from the devil.
Remicade has been my miracle drug.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 10/21/2009 12:44 AM (GMT -7)   
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

poodles
Regular Member


Date Joined Mar 2009
Total Posts : 180
   Posted 10/21/2009 3:09 PM (GMT -7)   
I am female, and orgasms hurt my whole body. I think I tense every muscle in my body. The orgasm itself is as enjoyable as ever, but my whole body hurts afterwards.
Vickie

Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 10/21/2009 5:20 PM (GMT -7)   
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.
Fibromyalgia, sleep apnea, retinal detachment, gastric bypass surgery


robert_the_cube
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/10/2009 2:52 AM (GMT -7)   
The first advise I'd give to you, or anyone, is not to trust your doctor. I have a
PhD in a related branch of science and I've been around doctors for a couple of
decades. I've seen both the clinical side and the research side of the profession.
Despite the public perception that medical doctors are highly trained and
competent, the sad truth is that it is rare to find a medical doctor who is even
moderately competent. They are well versed at putting on a show, but the
overwhelming majority are so inept and scientifically ignorant that they are a
danger to their patients. For a problem that's at all unusual, it can be quite
difficult to find a doctor who is useful.

In case you think I'm exaggerating, here's a statistic to ponder. By the estimates
of the medical field itself (a number of different studies), the number of people
who die each week in hospitals in the US because of errors in their
treatment is greater than the number of people who died on 9/11. Yes, you read
that right. And it doesn't include the far higher number who are damaged but
don't die, and the even higher number who don't receive care that could have
alleviated treatable problems.

I have a friend who started having painful orgasms about 15 years ago. It was for
a very simple reason having to do with the prostate not producing enough fluid,
but it was not correctly diagnosed for many years. It took even longer for the cause
of the prostate problem to be uncovered, which was a low testosterone level. This
is an example of how hard it can be to uncover the cause of even fairly simple
medical problems, given the low professional standards in today's medical field.

So, ... don't be satisfied with the advice of a single doctor. The chances are too
high he won't know what he's talking about, and the consequences for your
personal well being are too serious. Also, seek the advise of intelligent people
outside the medical field, especially scientists with research experience. It's
easier to find someone of high intelligence outside the medical field than inside.

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/10/2009 11:41 AM (GMT -7)   
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.
27 yrs old-Fibromyalgia; PCOS; Surgery induced Menopause; Classic Migraines with Aura; Neuropathy; Ankylosing Spondylitis w/ narrowing around the spinal cord; Spinal Stenosis of the Cervical & Lumbar Spine; other little things
 
Medications for pain: Oxycontin; Soma **will update when change meds for sleep, etc.
 
Other treatment: Aquatic Therapy (still have to start); Sleep Study (need a sitter)

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