Poll Sex, Chronic Fatigue Syndrome and Fibromyalgia: the Sex Poll

[Cort]

Pain whenever you move certainly has reduced my formerly significant sexual interest. Chronic pain also causes fatigue and lowers motivation and ability for everything IMO. Add an opiate and you are seriously f**cked up but not f**cking.

 

[PamJ]

This is off topic, but I don't know where or how to send you medical articles. This one seems iffy, but interesting

http://yourmedicalguide.info/italian-doctor-may-have-found-surprisingly-simple-cure-for-multiple

 

[KweenPita]

I thought of a funny antidote. When my Fibromyalgia, I hate to call it that since it's parameters goes way, way beyond it's first diagnosis. I call it to my doctors with a sense of humor "we don't know what the eff you have syndrome".

Anyways, went to Gyno, male at time because I went from being mutli orgasm bunny rabbit even with pain. Pillows, and gentle hubby are creative, to frustrated and suddenly no orgasms and if I came close, blinding headache, strokelike face, memory loss! So you think this guy would be like "OH SHIT". But no, he brings me these pamphlets back in about cuddling being as satisfying as orgasm. Building emotional depth in relationships. Me and hubby had been married for 20 years at this point and have always been the couple everyone wanted to be, because we still acted, were attracted, and loved like first marrieds. Hell, we taught marriage courses and counseling!

I just walked out. Said nothing. Although I wanted to ask numb nuts had he ever had an orgasm, because I had, and I loved cuddling but not the same @$$ wipe. Anyways last visit to him. Also, a couple months later found me in Atlanta, at my "old" Gyno Tom Selleck look alike, but so much, much better. I digress. With Cancer 2, of the Uterus, that Cuddles didn't notice my Uterus was three times the normal size.

I didn't know what an orgasm was the first time I had one. Hubby and I were that dumb. Not virgins, dumb. Over 36 years, love, being best friends has been the best. With this disease we have figured out love making or lack of along the way. Thank God for gadgets! Sex, even between two people doesn't always mean bare back rough riding coitus.

Life is stages. Love is stages. Commitment is just that, to remain through all the rotten, good, poor, rich, happy, stages. Hubby and I say we raised each other and where one lacks, the other has strengths, like puzzle pieces. I believe everyone has a puzzle piece unless, you are one of the strong ones like many of people I know who don't need someone to reign them in. And as I said before Thank God for gadgets.

 

[Johannes]

Thank you for starting this important topic, Cort. For me, sex drive is on the same high level as before I got ill eight years ago when I was 21. I am also well enough that PEM is not a big deal for me if I don't go too wild. However, ME/CFS has affected my sex life in that my wife is the main bread winner and due to her job she is more stressed out than before I got ill. My big wish would be that she could work less so that she can be more right-brained like she was when we first met traveling in a van through New Zealand when we only focused on finding great beaches, cooking yummy food, and making love.

 

[Camilla Cracchiolo]

I've heard that happens to some people. The only thing that happens to me is that when I'm really depleted and I ejaculate it hurts...it's really weird!

I completely agree! I have had ME for 28 years, and I stopped having sex with my husband about 20 years ago. Mostly because I developed vulvadynia with the onset of it, and it hurts like hell! Plus, I've gotten more and more sensitive to touch, so being touched drives me nuts. I can't even stand for my poor kitty to lick me any more and she tries so hard to be affectionate.

 

[MoonFlower55]

as a caregiver- this illness makes having sex impossible. One- the medications make my husband have no libido, no real thought of having sex or interest. We are living like companions- some hugging & short lip smacks (very rare real kissing) & minimal back rubs but that's it. Between the medications & illness effects there is no room for a sex life. For me- I have to give it up also- a little anger here at the illness not at my husband - for how much it has altered our life.

 

[MoonFlower55]

as a caregiver- this illness makes having sex impossible. One- the medications make my husband have no libido, no real thought of having sex or interest. We are living like companions- some hugging & short lip smacks (very rare real kissing) & minimal back rubs but that's it. Between the medications & illness effects there is no room for a sex life. For me- I have to give it up also- a little anger here at the illness not at my husband - for how much it has altered our life.

 

[KweenPita]

Thank you for starting this important topic, Cort. For me, sex drive is on the same high level as before I got ill eight years ago when I was 21. I am also well enough that PEM is not a big deal for me if I don't go too wild. However, ME/CFS has affected my sex life in that my wife is the main bread winner and due to her job she is more stressed out than before I got ill. My big wish would be that she could work less so that she can be more right-brained like she was when we first met traveling in a van through New Zealand when we only focused on finding great beaches, cooking yummy food, and making love.

Johannes, please tell your beautiful devoted wife from me. Relax and enjoy, we only have the present, NOW. It's too precious to slip by. I would live all my special moments again and again. Because I, thank God, did what brought me joy and fulfillment, loved truly loved, and gave myself to those I loved completely. At the end of it that's what matters, those are the now that counts.

 

[KweenPita]

KweenPita, I have read of this exact issue and it was that this is a major sign of a brain aneurysm that needs repair before it ruptures. Splitting headache right at peak of orgasm when blood vessel dilation changes. I know that so many symptoms of ME/CFS, and FM can mimic other serious diseases, but this is serious enough to not take lightly and tell your doc about. Best wishes!

Oh by the way thanks a effing bunch, I sincerely mean it! Really thank you. I just hate I have to tell this new information to my ever vigilant great Doctor and ready for my umpteenth MRI! I just love those things and all the valium it takes to get me in one

 

[loki]

Interferon hit me hard at age 25 and though i had a great sex life before, it is extremely cut short afterwards... it's like i have no desire to have sex anymore!!! i just don't know why... these constant hot flares in my spine seem to play a role in this illness or whatever it is, but i don't care anymore... i just wait till i die.

 

[Raba]

Friends please checkout this site. Post Orgasmic illnesss syndrome.

I have BOTH Cfs and Pois i think they are overlapping conditions. Simultaneous onset of both 23 years ago.

What i really think is that most of the missing men in cfs have self labeled as POIS. Testosterone levels maybe protecting most Men from longer and deeper episodes. There are women there too. I think we all POIS and CFS patients have both syndromes with great individual variability. Actually i tend to believe they are in same illness spectrum.

http://poiscenter.com/forums/index.php

Mr Raba

 

[Justarose123]

I noticed about a year after car accident that I literally lost sensation in my clitoris over night? I remember everything was great and then about a month later I was having. Hard time, I Thought what the heck where is the blood flow? I was aroused but physically my body wasn't. I'd like to try one of the mans products that effects the blood flow because it could be neurological. But then there is the issue with blood flow and these deseases. I only know that when it happens it's so weak compared to what it was and I feel bad for even complaining as my sister stated she's never even had one, but then she doesn't know what she's lost, I also miss the intimacy when you share that with someone you care about, I know first hand that it messes with your desire to even try and meet someone to love, I wouldn't want to put all my baggage on top of everything else on to a relationship. I saw this show where people who were single but liked to cuddle called a service and asked for a cuddle buddy nothing more but I remember thinking its do lonely being sick. I wish I had a cuddle buddy from the beginning its so much harder to start a relationship now,

 

[Cort]

Friends please checkout this site. Post Orgasmic illnesss syndrome.

I have BOTH Cfs and Pois i think they are overlapping conditions. Simultaneous onset of both 23 years ago.

What i really think is that most of the missing men in cfs have self labeled as POIS. Testosterone levels maybe protecting most Men from longer and deeper episodes. There are women there too. I think we all POIS and CFS patients have both syndromes with great individual variability. Actually i tend to believe they are in same illness spectrum.

http://poiscenter.com/forums/index.php

Mr Raba

Yes testosterone can be protective. Check this out about mast cell activation syndrome and orgasm

http://phoenixrising.me/archives/13083

But that’s not all. Earlier we noted that mast cell degranulation can cause dizziness and reduced blood pressure. Biaggioni, an ME/CFS researcher studying orthostatic intolerance noted that mast cells are “strategically positioned to modulate sympathetic (nervous system (SNS) activity” – a key system in ME/CFS. In a small 2005 study he described a process by which mast cell activation (MCA) caused orthostatic intolerance, particularly in patients who experienced ‘flushing’.

Intriguingly neuropeptide Y – a proposed biomarker in chronic fatigue syndrome – can induce mast cell degranulation and a subsequent lowering of blood pressure. Biaggioni found that POTS (postural tachycardia syndrome) patients with mast cell activation experienced episodes of flushing, shortness of breath, headache, lightheadedness, excessive urination, and gastrointestinal symptoms such as diarrhea, nausea, and vomiting. These symptoms could be set off by such normally innocuous things as standing for long periods, exercise, premenstrual cycle, meals, and sexual intercourse.

 

[Cort]

I noticed about a year after car accident that I literally lost sensation in my clitoris over night? I remember everything was great and then about a month later I was having. Hard time, I Thought what the heck where is the blood flow? I was aroused but physically my body wasn't. I'd like to try one of the mans products that effects the blood flow because it could be neurological. But then there is the issue with blood flow and these deseases. I only know that when it happens it's so weak compared to what it was and I feel bad for even complaining as my sister stated she's never even had one, but then she doesn't know what she's lost, I also miss the intimacy when you share that with someone you care about, I know first hand that it messes with your desire to even try and meet someone to love, I wouldn't want to put all my baggage on top of everything else on to a relationship. I saw this show where people who were single but liked to cuddle called a service and asked for a cuddle buddy nothing more but I remember thinking its do lonely being sick. I wish I had a cuddle buddy from the beginning its so much harder to start a relationship now,

It is much harder to start a relationship now..

Check out this thread http://www.cortjohnson.org/forums/threads/looking-for-love.4122/#post-16973

 

[Seeksassy]

Hmmm...it's been so long, let's see what I remember! I had FM first, and don't recall any problems. The distraction was a great relief. Oh, some muscle spasms, and cramping, but sex was still definitely worth it. Haven't had a partner for years, the social isolation makes that hard. And since the fm I've lost some body parts, so have some body image issues, lots of scars, one breast implant, etc. But CFS was diagnosed in 2010 (FM in 1996) and I haven't had sex since then, so I guess I don't know how that might affect me. I still masturbate satisfactorily, maybe not as often, but I don't know if I'll experience new pains or pem. Hope I get the chance to find out one of these years!!

 

[Seeksassy]

Yea kind of miss it!!! Glad Sex was great to prior to this illness.

Yes, sometimes I remember to be greatful for all the years I had of healthy happy sex!!!

 

[Ughhh]

I had vulvodynia for over 15 years, starting in 1999. Not sure how or why if it's connected to my other problems. I tried many treatments and eventually stopped pursuing treatments bc it all seemed to be dead ends useless, I took a break. I got new insurance around 2016 so I made appt with new gyno to check out are there any new treatments, ideas. She was familiar with vulvodynia and said this is the first thing I have any patient try for vulvodynia, go off birth control pills, use estrogen cream and topical testosterone ointment, must do all at same time. I was skeptical. I wasn't even on the pill when it started, but said ok. Started doing it and after a few weeks noticed no pain, and as I investigated found that the pain completely disappeared. Thankfully I consider myself cured, now this is several years later. I'm not having the sex life I thought I would be bc I've been taken down by numerous other non sexual symptoms that are making it hard to function in life, but in case any other women suffer from vulvodynia and could use this info.