I was diagnosed with fibromyalgia and Heds, I have nerve pain head to toe all day long but it flares up and painfully stings my legs after I orgasm. Does anyone else get intense muscle cramps or nerve pain from finishing? How do I help this? I havent found any meds to treat my nerve pain yet. So far ive just been trying to relax and slow down when doing sexual activity to prevent my body from being too over exherted,and use a heated blanket or hot shower.

I long wondered why the penis always hurt after ejaculation, making successives uses less enjoyable. It's said to be commonly known as "Swollen penis" (I'm Baguette, never used this word before).

But using a massager as a sex toy to masturbate doesn't provoke this inconvenience. I theorised so that this condition is created by the irritation of the glans movements and frictions.

I managed to find that applying lube inside your foreskin reduce penis irritation from masturbation, testing soon for sex. Even without having foreskin, apply lube on your glans can help reduce abrasion of the movements.

So use plenty for madam (and monsieur) holes, and as well for your own member inside the condom (but only on the glans !). Even if natural lubricant works, I Always apply some extra lube to make sure there is no injury.

After 3 or 4 times in a row you'll be happy to not having a hurting dick.

And remember : Condom do NOT use oil lube. Silicone sex toys ALWAYS use lube, and ONLY water lube.

Hey Y’all, 

Your mod here posting a bunch of info about why people in chronic pain may want to start and continue BDSM.  I presented at a conference and wanted to share a short summary of the evidence-based research and narratives I have found through my research.  

If you want more information or have info to add to this list, please comment below or DM me. I want to know more so I can provide better education.

some stigma of chronic pain and sexuality

• our sexuality is dismissed and BDSM is not even thinkable
• assumed we have become asexual or a ”delicate flower”
• we have the right to the sex we want
• for many of us we still want sexy time and BDSM and can use sexy time/ BDSM as a pain management tool.
• write our own scripts
  • “There is a need for diverse experiences of intimacy for individuals whose chronic illness and pain inhibits them from traditionally heteronormative sexual acts.”
  • Communication research can aid in this pursuit by highlighting narratives that fall outside of the TSS (traditional sex script).

summarized from Emily Nagowski’s Come Together: we are to have sex the way I and my lover(s) want to have sex (or sexy time), there is no “right” way. 

BDSM boundary-setting recommendations

1. reflect upon needs and boundaries amidst shifting symptomatology,
2. (re)write sexual and intimate scripts to prioritize (dis)ability,
3. (re)negotiate relational needs and set expectations, and
4. bring awareness to the role of mental health and medication.

why do chronic pain patients start BDSM?

• feel connected to other caregiver/ lover(s)
• improve their communication with their lover(s)
• feel in control of their pain
• less catastrophizing (fear) of pain
• somatic release of built-up tension/ frustration and pain
• arousal as a pain management tool
  • neurotransmitters send signals to your brain via your spinal cord to release “feel-good” chemicals
    • Oxytocin
    • Adrenaline
    • Serotonin
    • dopamine
• pain perceived as pleasure
  • research showed that BDSM practitioners experience both “good” and “bad pain”: “good pain being hit with a flogger, bad pain stubbing my toe.”
  • there is a line that can be crossed from pleasurable pain to PAIN

the iceberg pain warning

• while swimming with “feel-good” chemicals your pain reception is reduced and therefore your pain signals are reduced. you may only feel a portion of what pain you would normally feel

why do chronic pain patients continue BDSM

• increased pain threshold
• altered state - subspace & dom space
• differentiate different types of pain - good versus bad pain
• arousal can continue to be a pain management tool
• distraction from our pain through fantasy
  • distraction - Pain Gate Theory

evidence-based research/ books cited in this webinar:

• Labrecque, F., Potz, A., Larouche, É., & Joyal, C. C. (2021). What is so appealing about being spanked, flogged, dominated, or restrained? Answers from practitioners of sexual masochism/submission. The Journal of Sex Research, 58(4), 409-423
• Melzack, R. (1996, June). Gate control theory: On the evolution of pain concepts. In Pain forum (Vol. 5, No. 2, pp. 128-138). Churchill Livingstone.
• Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk, MD
• Come Together by Emily Nagoski
• The Science of Orgasm By Barry R. Komisaruk, Carlos Beyer-Flores & Beverly Whipple. Johns Hopkins University Press. 2006.

personal narratives cited in this webinar:

This information is wisdom passed down to me through various forums and also wisdom from my own experiences, experiments, and self-learning of living with chronic pain for over twenty years.

• Forums from Reddit: r/ChronicPainSexTalk, r/BDSMAdvice, r/ChronicPain, r/SexOver40 and many others
• Discord
• Instagram

I wish there was a place to find others in a similar boat who are dealing with a chronic condition who get it. There aren't questions about devices or body abnormalities. Just a place to post, have some fun, and feel seen.

I have a hard time with a gratitude journaling when I live in such pain, it makes me feel worse sometimes and for me I feel better when I feel like I am doing more and not just stuck in bed.

So I started a doing or function journal showing how I am functioning and what I’m able to do. I took one of those daily calendar books and everyday I write ALL the stuff I do: eat, take pills, feed the dogs, take a shower, leave the house, clean anything, cook, read, write, spend quality time with spouse, hobbies, posting here, and sexy time… to name a few.

Of course I can’t do all those things in one day but many days I fill up the space pretty good. Some days are designated resting and that is something I am doing also.

It helps when I am feeling sorry for myself and the voices in my head are telling me “you can’t do anything anymore, you can’t have sexy time anymore,” I can flip through the calendar and see all I have accomplished and the times we got to fool around.

I’m on my second year (second book) of doing this and I’ve somehow managed to keep it up. Also it’s very simple one word accomplishments without having to write a bunch to prove to my inner bad thoughts, “nope I’m still functional.”

Wanted to start sharing some of my tools as it’s so hard for me to find tools for living in chronic pain and mental issues, as most of the tools are for able bodies with mental illness.

Please I’d love to hear if you have any great tools you’ve come up with, especially if they include sexy time!

-your mod

I am a 34M married to a 25F and we will have been married for 2 years in October. I was diagnosed with Arthritis about 3 years ago, shortly before my now wife and I got together. I also have ADHD and take medication for it (Adderall) which helps me to focus during my work week and also helps to get things done around the house when I'm at home. I have an undiagnosed Fibromyalgia (I watched my Mom and her symptoms for years, through her daily issues and believe this to be the same, but nothing concrete as I hear it takes quite a while to fully diagnose) and my Dad had a history of Erectile Dysfunction and heart issues. Up until I hit around 30, I remember having an insatiable sex drive and have frequently shared this with my wife. Now, she is 25 and has that same sex drive and my lack thereof is killing my marriage, as we are just getting started with our lives together.

I work in Opticianry (not a doctor, just the fitting of eyeglasses, styling, fitting, etc) and my compqny just recently built a new office. Since this new place has opened, I feel our business has tripled (maybe quadrupled) and we have been busier than ever. I have tried several times to ask about hiring more help to no avail, yet when I'm swamped with orders that need put in and sent off they also want you to have no overtime, which is pretty dumb logic imo. Most nights I come irritable and vent for a while to my wife just to get it out, which she says she doesn't mind. My wife and I live a really nice life. We both have great income jobs, recently bought and paying a mortgage on a house, go out and do dinners, take walks, spend time with family, game together, cook together and our relationship is great until we get into the bedroom. Given my symptoms at the start of this article, most of the time I have bodily pain and even a headache pretty frequently, usually daily. Most of the time sex is last thing on my mind and the first on her mind.

Recently, we have been talking about trying to get pregnant. Being in the pain I am in, I got Medical Marijuana card several years back and have been using that for pain management which works great, but according to my doctor stops the production of sperm, which is likely causing infertility issues. As of this coming Monday I will have been 3 weeks free of Marijuana, yet my sex drive is down the tubes (it seemed to help with horniness somewhat, but not all the time). I also am a daily nicotine vaper and have been trying to slowly cut that diwn , as well. At this point I'm just not sure what to do and while I was trying to avoid posting like this on here, I wanted to reach out and see what others have experienced and ask if anyone could give some kind of recommendation.

whew I know is a lot of information to take in, but any sort of help or direction anyone can give, would be great and very much appreciated.

Hey Y’all a message from your mod…

I wanted to share a pain management tool that is not a common tool for many, but I am using it often and it works for me.  It’s arousal.  When you get aroused, your body releases natural pain reducers. And the good part is you don’t actually have to do anything but think about getting aroused, or think about thinking about arousal.  Your brain does differ between doing sexy stuff or just thinking about it. 

I don’t usually have sexy thoughts while I am doing the mundane adult stuff during the normal do.  So what I do is sometimes I wear lingerie or something that is comfy and sexy around the house.  When I feel the soft material against my skin or see my husband's reaction to me wearing lingerie, it makes me feel sexy and aroused and my pain reduces.  I try to remember to stop and feel the feel-good chemicals when they occur and soak them up. 

I've noticed that during sexy time my pain is lower and I can do more when I am all aroused, but as soon as it is all over, my pain will come back fast and more than before we started. I always thought it was just the “exercise” my body was doing, but it is a combination of the movement and also the following that are released in your body that help reduce the pain during arousal:

Endorphins are hormones:

1. Adrenaline / Epinephrine -  A small amount is released while you are aroused and it dampens your pain perception.  It also makes your blood flow.  This is why you might feel a small rush of energy when you get aroused.   
2. Oxytocin -  This is called the “bonding hormone”.  It is unique as it is released in your blood and your spinal cord.  It makes you feel connected and bonded to the person you are having sexy time with.  It is also released in your body when you are lactating so one can feel bonded with the infant they are feeding.  The tricky part is it makes you feel &  think all the decisions you are making right now are correct. Think back to those times you met someone new and were fooling around with them and you thought this is the one, to the next day say What was I thinking?? You weren't thinking, you were feeling oxytocin. 
3. Vasopressin - makes your blood flow

Neurotransmitters - deliver the feel-good feelings throughout the brain and body.  They transmit the following that is also released during arousal

1. serotonin - lowers your pain perception
2. dopamine - ”feel good transmitter”

Please remember I am not a doctor, but a sexuality educator, and please consult your healthcare professionals before doing anything I suggest that may cause you harm. 

Hi, I’m a severely disabled guy and I'm looking for advice on positioning for intercourse. I'm struggling with being able to perform due to my pelvis being too low and difficulty in keeping my legs apart, which doesn't provide enough space for my partner.

We tried the missionary position, but my pelvis was too low, and it didn't work. We tried the rear position, but I could only handle 10 seconds because my back started hurting so much. I would really appreciate some advice on how to make intercourse easier and more feasible. Thank you!

The Ultimate Guide to Sex and Disability by Miriam Kaufman, Fran Odette, and Cory Silverberg

I had started this book a while back and had to put it down, but picked it back up again as a sex ed book club I joined selected it for May’s book. We were all hopeful as many of us have ability issues of varying types, but unfortunately, we were let down.  There was some good information given, but some bad and some very judgemental-type comments.  If you are brand new to being disabled and your sexuality being impacted you may find some of the information helpful.  It is not all bad and I am not saying to burn the book, but understand we felt there were not some good moments, and I cannot recommend this book without pointing out the issues. 

If you are new to being disabled you might find some information helpful, but if you have been working through your disability and looking for more advanced, more detailed information, this isn’t it.  We all felt we had not learned any great new stuff. Yes, we are all sexuality educators and have more information than most on this subject, but we were coming at it from being disabled too, and hoping to have more information for ourselves and our students.

We were not sure who this book was written for, but it seems to try to be written for everyone who may have any type of disability, plus any therapist who may want to treat a person with a disability and needs to understand what they are going through and how to address their disabilities, the issue around it and sex positions, sex toys, and a whole lot of other stuff crammed into this book.  It was too vague, too broad, and trying to include everyone, left a lot of people and information out. Many of the sections of chapters could be entire books alone, but were a summarized paragraph of very important information.  

I did not like the format.  Each section of each chapter will break in the middle of it to give you a personal story of someone whose sexuality is being affected by a disability.  These stories are very hard to read, very upsetting, and way too close to home.  I was having to go from reaching an educational chapter to being ripped away halfway to be in tears from hearing how many others are suffering like me, and then back to the middle of the educational section.  It was hard to read like this for me. So I just skipped the personal stories around page 70.  This is what made the book feel like it was for therapists who did not understand what we were going through, that the authors wanted to present the case studies to confirm their findings. 

Unfortunately, I cannot find a better book out there about how to have sex when you are in chronic pain, which reinforces that I need to finish my work and get it to you as soon as I have the spoons to do it.  

https://www.corysilverberg.com/sex-and-disability 

This is Cory Silverberg’s website -  He also has some books for talking to your children about sex.  These children's books have been highly recommended to me by a few other sexuality educators.

• your mod

Hey y’all with so many lube options now available in your grocery stores and online, I thought I’d give y’all a few of my recommendations on selecting a lube.

My go to lube is coconut oil. It’s is fractionated and it stays liquid. It comes in a pump jar and costs about $10-$18 for a big jar. It’s organic and don’t have to worry about eating it.
Pod: cheap, edible, moisturizing for your skin, in and outside, can work both in the vulva/ vagina or anus/ rectum. Lasts a decent amount of time before reapply. Cons: breaks down latex. This means condoms and some toys. They aren’t going to disintegrate in your hands, but leave microcracks which can pass STIs, sperm or harvest bacteria.

Over the counter silicone lube we sexuality educators like: uberlube. It’s ph balanced for the vagina and works well. Easily available online / sex stores Pros: does not wash away easily and great for anal play. Stays the longest with friction.
Cons: silicone can break down silicone, which is what most of your sex toys are made of. However, I have found checking my toys often and try to buy the best silicone sex toys I can afford, as the cheap ones break down faster.
Not edible. Option is to use glass or metal toys with silicone lube.

Water based lubes - do not really have a recommendation, because all that is important is to check it’s ph balanced. Otherwise you can get yeast infections or bacteria vaginoisis.
Pros: many are edible, some are flavored can be used anywhere with any toy and condom. Cons: it breaks down fast and you need to reapply often, this means it’s not great with anal, and ok for vaginal. Will completely wash away in shower.

Tip: Water alone is not a lubricant but just better than dryness. Spit is not a lubricant.

Big Takeaway: Read the label and stay away from glycol or weird chemicals you wouldn’t want to put in your body. Check it’s ph balanced for vagina owners, and I would even if only used for anal (Better safe that an ER visit I say).

I have charts and such on lubes and their ph balances and tons of info available upon request, but assuming y’all just want the basics and not get overwhelmed with so many choices now.

My disclaimer:these are my recommendations from a sexuality educator, not a medical doctor. Please ask your medical doctor what lube is best for you especially if you have any medical issues or skin problems, etc.

You can be allergic to ingredients and not know it yet so please so a test with any new lube before the point if no return and ruin a sexy time.

Thank you! -your mod

What are y’all using? What working for you?

Anything else y’all need a quick education about?

I started having pain with sex all of a sudden around the beginning of 2023. I had never had any issues like this before it just came out of no where. I had a whole bunch of tests done and had some ultrasounds and they think I may have some pelvic congestion. I don’t have any pelvic pain at all, just a pain with sex. When I research pelvic congestion syndrome it is also accompanied with pelvic pain throughout the day as well, but I don’t have this. I sometimes have pain with penetration in the outer area, but not as much as I have a deep pinching pain with deep penetration. It is like a burning pain. I also think I may have interstitial cystitis because I have UTI-like symptoms when I drink too much coffee or other bladder irritants. I’m wondering if this could be the cause? I just want to know if anyone has had a similar experience and if so, any suggestions because it’s been really sucky and things just don’t feel the same it’s kind of sad. I also feel like I put up with a lot of pain because there’s been so many times where I’ve had to bring it up during the act and I just feel bad for being broken.

Hey Y’all your mod here and I have been having tremendous pain for a few years now, I live in the 7-10 region and it has been difficult (to say the least), but I am still trying to do my sexuality education when I can. I’ve decided the best way to share with y’all all the education and wisdom I have about having your sexuality impacted by chronic pain is to make a podcast with a video version you can watch on YouTube. I was really hoping to have the trailer by March 17th, as that was the 20th anniversary of my car accident, but that deadline has come and gone and there is no date for when the podcast will be available, but I promise to continue to work on the episodes and share with y’all what I am doing. It is entitled Chronic Pain Sex Talk after this subreddit.

I am going to be working on a bunch of episodes to stockpile and then release them once a week or every other week. So right now I will give y’all a quick summary and some little tips or techniques to use now so you don’t have to wait for the big reveal to have some pain management tools to try out or information that might be beneficial.

I am asking from y’all to provide me with information I might not have thought of. If I talk about something you have tried out and love or hate, please let me know via comments or DM me. I want to hear y’alls story as I only know mine and what has been shared with me. I research but there is not a lot of research out there on chronic pain and sexuality, so your wisdom is very important to me, it can help me help others. I will never share your name or identifying information, but share the wisdom and education you provide me.

Remember that everything I am providing is coming from an educator, not a therapist or a medical professional and these are tools which I ask you to ask your team of medical professionals if this is okay for you and adapt accordingly. I do not think that what exactly works for most will work for you, please adapt and change my tools for your needs.

Right now I am working on the episode about To Schedule or Not to Schedule… “sexy time”. This is part of the series I call pregaming for sexy time where I will discuss all that people do to prepare for sexy time. I define sexy time as that time that is spent with your lover connecting, being intimate, or foolin’ around. Whether that is a minute with a kiss, touch, or meaningful stare or hours of sweaty bed-soaked sex. And scheduling this has the myth it is unsexy to do. Yes, scheduling the dentist is unsexy, but scheduling sex can be the opposite. It can bring anticipation and tingles throughout the day just thinking about what we have scheduled for this Thursday night. Because arousal happens when you think about sexy time. You do not have to actually be doing it for your body to receive all the feel-good drugs, which are also natural pain reducers. So, for many, by scheduling sex they are using it as a pain management tool to reduce their pain throughout the day. Think about sexy time = arousal, think about scheduling sex = arousal, reminder on the calendar = arousal, etc.

However, for others, this may feel full of anxiety and performance issues. Maybe you have tried to schedule in the past and it just did not work out and now you are apprehensive to try this again. That is normal and there are tools to possibly alter your attitude towards scheduling sex so you can try this as a possible pain management tool. Also, there are times throughout the day that you may not want to feel aroused, for example: feeding your pets.

And lastly, we will talk about how to do this. How do you put sexy time on the calendar and keep doing it? Hint: make time to talk about sex, and during that time schedule sex. Otherwise, it is really hard at the breakfast table, “Can you pass the butter, please, and can we have sex tomorrow morning?” It just doesn’t happen like that for most.

And if you think I’ll never schedule sexy time… what did you HOPE would happen with your lover(s) after a wonderful birthday celebration, or Valentine’s Day, or a romantic getaway? You might have hoped for sexy time and it was already scheduled on the calendar. That is scheduling sexy time.

Working on a whole series Pregaming for Sexy Time and then I’ll start the Foolin’ Around and then Aftercare series. These are all episodes around tips and techniques you can try out so you can find have the tools to have the best and longest sexy time your body is capable of doing. They are designed for at least one of the lovers to be impacted by chronic pain, but the info are options for any lover to try out, even if you are able bodied, flying solo right now or asexual. This is about adding pleasure, intimacy, and hopefully some fun to your life.

I would love to hear what y’all do and be able to share this with others. Thank you and I will keep doing this as my work progresses and keep y’all up to date with when this podcast/ webinar series will be released.

Your mod

My exwife and I both suffer from multiple kinds of arthritis that cause severe pain and for me also causes severe fatigue. I could not get her to understand that I am going through some of the same stuff and that I am in debilitating pain often. She felt bad that she couldn't perform sexually the way she used to and she made some decisions that really caused me a lot of emotional pain. Now I want someone I can just have cuddles and intamacy with. I feel so physically alone and have for a long time. How do I talk about these needs in a way that doesn't make me feel like I am desperate. I don't know what to do.

Just wanted to say THANK YOU to all of you who have stayed as members of this community and we have reached over 1000!

This to me is good news as the community is growing, so resources and support can grow. Please let me know if there is anything I can do as your mod to help, support, or grow the community more for you.

thank you ,

your mod

Hi all, anonymous account as I'm worried my partner (F35) will read this.

We've been dating for a few months and had a lot of sex. She has had mostly female partners in the past and hadnt had any significant penetration in nearly 10 years.

We have a great relationship with good communication.

She's told me her uterus is different to most people's before we had sex, I did some research and tried to adapt positions to reduce the chance of causing her any discomfort...

However it seems it's a lot more than that. The first time she refused lube and persevered through. I managed to get perhaps one inch into her and it caused me some pain as well, particularly the next day..

The next time I used a bucket of water based lube and made sure she was incredibly aroused first. This time I got maybe half way in, we picked a position where the amount I could get in was reduced as well (her laying prone she said was the most comfortable).

I've pulled back from penetration a lot now and focus on everything else we might do until yesterday when I explored her more with my fingers...

Her g spot feels closer than usual to her vagina opening (sorry if that's the wrong word!), and when I touch it she said it wasn't bad but not something that would lead anywhere. She also has said she has had entirely awful experiences with men that will use her, cause her pain then abandon her.

No wonder she's largely chosen to be with women....

I'm at the point where I know I need to focus on her comfort, make sure she knows penetrative sex isn't a deal breaker for me, but I'm also curious what to say and do to help her enjoy penetrative sex in the future. She's very keen to learn, she's the most sexual person I've ever met. Her clitoris has no offswitch (dozens of orgasms a night). But she says her sex life has been full of 5/10 nights. She feels like she is missing what other people have in terms of physical response.

Sorry for the long post, I've got a lot of assumptions about this that I have purposefully ignored as I want fresh perspectives.

Started the day looking for a new podcast that talked about chronic pain and sexuality and found one. I was excited as I never listened to this one and the host said she had an accident and had been living with chronic pain for 4 years (I think that is right), so she has to understand what it is like I figured. But I got about fifteen minutes in before I realized my body was clenching and this was due to being told and directed on how I HAVE to live my life as a chronically ill person. The host started out great saying they did not want to direct us but that we were to find out our own sexuality and experiences, abut less than 15 minutes into the podcast she started directing me and I started feeling bad about myself because I was and cannot do what she is saying I HAVE to do if I want to be successful living with chronic pain and be able to keep my sexuality. It felt like all the things I have been told I have to do and I cannot so I feel shitty about it: “If you are in chronic pain, you HAVE to accept what is going on. You HAVE to accept your fate and love your body and love your neighbor and still take care of yourself and your family and be spiritual and do yoga and be an inspiration to all the able-bodied people out so they don’t look down at you with pity.” I am tired of people thinking they know the one answer for all and that if you don’t do what worked for them you will NEVER succeed. It's this fear and direction instead of sharing and support.

Sick of it. This is my rant. I am sick of it.

I know this is not intentionally harmful and meant to be helpful, but it is harmful to me. I understand how easy this is to do and probably not even realizing it is not great, because I have been guilty of this in the past. I know it is easy when I am feeling slightly better to feel I now know ALL the tools to survive and thrive and I must tell everyone else how to do this! I want to fix everyone and take away their pain. I just want to help, but am I causing harm instead? I have to remember no, that I need to ask before giving advice, and that many of us often need to vent or support, someone to understand, and not a new task to do in hopes it will lower the pain slightly.

My hope is if I share my toolbox of knowledge, wisdom, and skills then maybe something I am doing will help you, or it can be slightly altered and fit your needs, or it will spark your creative mind and you have a new tool to try out. My hope is that by sharing all the intimate details of my life and the creative parts that rumble inside my brain I can help someone else out, I can give them a tool they need. I can find purpose in the horrendous pain I am living through, and I need that.

From this point onwards, I promise to tell you what I am doing, what I have learned, what I have experienced, or what others are doing. I want to share all the knowledge I have so you can use what you want of it to develop your own tools, to improve your pain management skills, to filter and adapt as needed for your uniqueness. I will not tell you what you have to do or should do. It's your body, you do what you need to do to get through the day. Whatever the hell it is, you do it as long as it is not hurting someone else who doesn’t deserve it. You know yourself better than anyone else. My pain is not your pain, my illness is not your illness, therefore I don’t feel I have the right to tell you how to live. One of my therapists used to always say you don’t have to do anything but breathe.

Oh, I am also sick of hearing these stories of people who came to terms with living with chronic pain after a couple of years and how they have these seemingly normal lives and are role models and an inspiration to ALL. I am not buying it. Are y’all really like that? Are you out there because we need to talk. Are y’all accepting and okay with what is going on? I am not. I am 20+ years of this and I am not accepting it. I understand it as best I can. I manage it as best I can but I am not accepting it. This reminds me of that saying you can’t love someone until you love yourself first. I call BS. I do not like a lot of aspects about me, I cannot say I love myself, but I LOVE my spouse and he loves me. I am able to love who I want to love and that can or cannot be all of me.

I want to share all aspects of my life. The good points where I have showered and my makeup is on and the days when the soap has dried up because a shower has not been able to fit into the schedule for a few days. My life is a loopy-loop rollercoaster with turns and drops and highs at unexpected times. I am riding it every day and I will share how I do this. I will share all the tools I use to keep the roller coaster…. coasting.

I am putting everything into the podcast titled Chronic Pain Sex Talk after this subreddit and I am starting my work on it now. I had to wait until I could figure out exactly how to share everything and I think I have a plan.

I will do my best to remember to share and not direct, but if I ever say this is what you HAVE to do, please call me out, please publicly humiliate me so I can feel the pain of hypocrisy.

Thanks. I need to get this out

Your mod

Hey Y’all,

This is your mod and I have a hard time staying focused enough to read a whole book, but I found book clubs work for me as I feel the push to finish by a certain date. Therefore, I am going to start a virtual book club on this subreddit and copy it to other subreddits. I am starting with The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness, by Fran Odette, Cory Silverberg, and Miriam Kaufman.

I’d love it if y’all did the book club and commented on what y’all read each week. There is a chance I get to talk to one of the authors and we can have some questions for them.

I will start the book in three weeks, to give you time to acquire the book. Each Friday I will post my comments about a different chapter and comment on what others have posted. It could be a great conversation and learning opportunity!

I will also reference the previous chapter’s post in each post and try to remember to post a comment to find the next chapter’s post. There are 15 chapters total plus an introduction. I will have a week off around Thanksgiving to let everyone catch up and do what y’all need to do that week. So that will be 16 posts +1 off week, so around 17 to 18 posts allowing for extra time, as we are disabled and there is no boss driving the schedule here but us. :).

I would love to hear if this would be beneficial to y’all. Or if there needs to be any modifications or accommodations.

Sept 15 - post telling you about the book club

Oct 6 - 1st Chapter

Oct 13 - 2nd Chapter

Oct 20 - 3rd Chapter

Oct 27th - 4th Chapter

Nov 3 - 5th Chapter

Nov 10 - 6th Chapter

Nov 17 - 7th Chapter

Nov 24 - 8th Chapter

Nov 30 - catch up week - No post

Continue posting each chapter each Friday until we are done.

Etc…

Here is the link via Thriftbooks (no affiliation, just like using them over other places)

https://www.thriftbooks.com/w/the-ultimate-guide-to-sex-and-disability-for-all-of-us-who-live-with-disabilities-chronic-pain-and-illness_miriam-kaufman_fran-odette/749819/item/6204116/?utm_source=google&utm_medium=cpc&utm_campaign=pmax_high_vol_scarce_%2410_%2450&utm_adgroup=&utm_term=&utm_content=&gclid=CjwKCAjwu4WoBhBkEiwAojNdXkvUNJg70KYr4mZjgUGW85xXSyNBl81HzfZ9NuG1xkgHQOlD6oiDGBoCqJgQAvD_BwE#idiq=6204116&edition=5437479

I will also copy my virtual book club to the following subreddits:

r/chronicillness

r/chronicpain

r/disability

r/fibromyalgia

If you know of other subreddits this may benefit please let me know.

Thank You!

Your mod

My Therapist asked/ recommended I look at Curable to help my chronic pain. I spent the evening listening to part of their podcast, doing some research, and listening to many educational videos on their app. I had some notes I was going to give to my therapist and thought it made sense to also give them to y'all and see if you had similar reviews or if the app helped someone? I would love to hear your stories about Curable - the podcast or the app.

​

This is my opinion. If you are using the Curable app or podcast and it is helping you, that is awesome! Keep doing whatever is helping you manage your pain. It is about you finding out what tools work for you.

​

Curable has a podcast (Like Mind, Like Body) and an app. In addition to thinking it might help me, My therapist wanted my opinion on the app. She has clients that are using it. I remember halfway looking at it about a year ago and not being impressed, but could not remember why so I figured being a sexuality educator specializing in chronic pain I should dive into the curable app and see if it helps me or if I think it could help others.

I listened to half a podcast and could not listen to it all, as it sounded way too like an ad more than an actual story… it felt contrived. Maybe it was just me. I was trying but I was skeptical to be honest going into these types of things. I looked at Reddit for curable reviews and found mostly negative comments, with a couple of people saying they knew of people it helped. Not too many people said it helped.

I tried my best to go in with a neutral disposition…Maybe I can learn something, this can’t all be bad...I like the aspect that there are multi-disciplines looking at helping and not just one MD. There is a team of people who co-founded Curable. I did the free portion of app and went pretty far in one evening and listened to a lot of their education. I ended when I reached the meditation exercise.

What I liked about the education - it was easy to understand they told stories and analogies to better help us understand what is going on in our bodies. The biopsychosocial model was explained well. The way pain is perceived and transmitted in our bodies was explained well and dumbed down for more to understand. I just wish it was not so dumbed down, I wish I could know where the research was coming from. If you are going to say “research indicated” then cite the research somewhere where I can find it. It can be a footnote, as most people are not interested in reading more, but I want to know where you are getting this information. I know how research papers are written, funded, and have flaws and biases in their studies. I want to know where you are getting your information from.

Also, it almost feels like medical advice in a very generic but could be harmful way. It does not consider those in pain although it is directed at us. For example, it said, “Congratulations, give yourself a pat on the back!” I just told you I have back pain I don't want to think about someone patting me on my back, or let alone myself trying to do so. If they were to respond, well that is just a phrase. I would argue back that one of the education videos is to be conscious of everything you say that might be adding more pain without you knowing. The entire exercise is about saying things like “I want to be pain-free” instead of “the pain is tearing me apart”. If every word we say matters, then why aren’t you being extra cautious of what you say to us? Its just indicating an odd attitude

This was on the website and it sums up the overall feeling of this app, "Thanks to modern neuroscience research and mindbody tools for chronic pain, we have our lives back." This translates to if you are in chronic pain you are not living, you have no life, you can't have a life back unless you are out of pain so buy our app, our app will get you out of pain. I disagree. You can live and have a life with chronic pain. Pain management and acceptance of what our current abilities are, is what I feel we should be being taught.

The education was very generic, and broad and talked about how pain is transmitted, and described the pain gate theory in theory, but did not mention what it was and did not cite anyone. I feel if you know nothing the education is good enough. They mentioned Howard Fields, MD PhD, researcher, and how he describes pain and how works in your body. It discussed a lot of how the pain is in our brain and how we need to retrain our brain from the way we are thinking now.

I do not know if everyone felt this way, but I felt so defeated. It felt as if the app was saying, “your brain is all screwed up and that is why you are in pain, but it is not your fault, that is how humans are wired. I am going to give you the magic ways to retrain your brain so you will not feel the pain. I think it is a lot of CBT training: cognitive behavioral therapy and mindfulness.

They kept referring to pain that had no source anymore. Or was pain that was being felt more than it should be feeling. But it seemed to not take into consideration that there is often a source of pain and that should also not be overlooked.

It kept insinuating that it can CURE your pain, that this is not a pain management tool but a curing tool. Yet over and over it says you have to accept the pain you are in, but yet “we can cure it”. It felt wrong.

The first exercise module past the education modules is to meditate. There were no options but to follow their breathing, their guided meditation. I can’t breathe like that, it makes my pain go up. At least one other time it directed us to breathe and I cannot. I had to make sure not to focus on my breath, as this makes my pain go up.

I did not get this far, but others on Reddit indicated curable starts telling them when to move or exercise and someone reported overextending themselves and hurting themselves,

Not ONE mention of sexual wellness, not even when they listed all the ways pain affects your life. Never once mentioned their sex life or their sexuality of those in pain.

I felt really bad about myself after doing the app last night and I still do today. I did all this CBT training with someone who was working directly with me and they had just finished their doctorate on CBT. I did all the exercises. I did the workbook. I was doing it hardcore. It did not work for me. I am still in pain. I could not cure myself, so I feel like a huge loser/ idiot. Why can’t I fix myself why can’t I cure myself… it sent me into a bad spiral that I have climbed out of yet.

The only thing that has ever worked was distractions - part of the pain gate theory by Richard Melzack and Patrick A. Wall (1).

Thank you!

- your mod, u/freckled-redhead

(1) Melzack, R., & Wall, P. D. (1965). Pain Mechanisms: A New Theory: A gate control system modulates sensory input from the skin before it evokes pain perception and response. Science, 150(3699), 971-979.

Hey Y’all,

it's your mod here and I am going to start posting more to this subreddit. Now that I am a certified holistic sexuality educator (through ISEE) I feel a little more confident in finally sharing all that I have learned.

I will share a topic and I would to hear your thoughts on the subject, what you like, hate, or anything that comes to mind, even if it is vaguely associated with the topic. I want to hear y’all stories, what you are going through, and how you are coping, as this information can help others. And that is why I am doing this to help others so maybe I can prevent some of their suffering and possibly give them tools to feel some pleasure instead of the pain we feel daily.

Right now I am in awful pain, just gutwrenching, ready to give up pain, and I was at a loss as to what to do to distract myself from the pain. Distraction is the best tool for me because if I can focus my mind on something other than the pain I get little microbreaks from the pain. (see Pain Gate theory by Richard Melzack and Patrick Wall). Then the pain will then subside, a little, and I can get my pain from a 7 to a 6ish with the right distractions. My pain right now has been in the 8/9 range and a lot of my normal distractions are not available… so what do I do? I was really racking my brain and I had an idea and I think it is helping. I need BIG distractions to get my pain lower once it gets higher than an 8.

I got a NEW hobby. I am a “serial hobbyist” I pick up crafting hobbies and start them and then move on for a while to eventually swing back to them. Right now my crafters' circle of life includes quilting, crocheting, embroidery, baking, drawing, painting, photography, walking, and more I cannot think of right now. However, none of those are working for me as a big enough distraction for various reasons so I had the idea of a NEW hobby.

A new hobby needs research, shopping, watching videos, talking to people, joining new subreddits and so many things that can be distracting and somewhat easy to do from your bed. A new hobby is what I call the equivalent of NRE - New Relationship Energy. It's all you can think about, you see it everywhere you want to do it every minute you can do it… It is a term the polyamory communities invented and I think it is spot on. Even if you never do the new hobby, there is the research, shopping, reading forums, etc that are a huge distraction from the pain.

The only drawback to this idea I have found is when you pick a hobby your body can no longer do and you have to deal with the disappointment. But I am trying to look at those instances as experiments that did not work than putting myself down for picking a hobby that I “should have known I cannot do anymore…” But be prepared for the heartbreak if you are picking something that is an iffy on the scale of your present abilities.

For any of you interested my new hobby is pottery. I did it for a tiny amount as a child and loved it. My mother’s friend used to fill up her Winnebago full of painted slipped pigs, basin, and all sorts and drive all over Texas selling her stuff. She would allow me to paint or help do a slip casting every once in a while. I sculpted and threw a few pots in high school. And lately, I got hooked on the great poetry throw-down on HBO Max. I am petrified my pain will not let me actually make anything, but so far the distraction is helping in microbursts. So I bought a big bag of clay, found some tools, and going to see what I can do.

I know some people do not have an extra penny to spend on a new hobby and I was thinking of some hobbies that can be inexpensive (all hobbies can cost a fortune if you want to spend it):

Drawing - #2 pencil and some extra paper/ Painting - student set of acrylic paints, brushes, and some paper or cardboard that you can paint one (options for canvas)/embroidery - thread and any leftover non-stretchy material, a hoop, and some needles/ reading - library card/ podcasts/ audiobooks/ baking/ sewing/ photography/ scrap keeping/ gardening

And check out Facebook or Craigslist for people selling yarn, thread, and other hobby supplies they started and stopped, or clearing out relatives’ houses and finding their yarn stash.

What else are some hobbies or distractions do y’all do? What do y’all think of this idea?

​

Thank you!

u/freckled-redhead

Hey Y'all, your mod here, and wanted to let you know of a book that I was reading that I am really enjoying and may be beneficial to you or someone you know. What Fresh Hell is This? by Heather Corinna And then I wondered if y'all would want to start a book club virtually on this book or another book regarding sexuality, chronic illness, chronic pain, relationships, disability, or? (or all combined).

What Fresh Hell is This? Perimenopause, Menopause, Other Indignities, and You is about menopause and I cannot imagine a better book on this subject. The author is a sexuality educator and the creator of Scarleteen and lives with chronic illnesses and pain that seem applicable to our group. They discuss how having chronic illnesses like fibromyalgia can make the ailments and symptoms of menopause worse. Not really wanted I wanted to hear, but better to be informed than not, and this book informs you from many aspects including the science behind what is happening to your body. They go into detail regarding your mental, physical, and sexual wellness during perimenopause and after menopause. So if are in your 40s, you might want to check out this book.

Oh! I forgot to mention she is funny (to me) and I really enjoy her snarky intelligent humor. A friend told me I should have listened to the audiobook as it's better with her reading it. I have a couple of chapters left, maybe I will see if the library has it...

Please feel free to comment if you have read this book or if you would like to do a virtual book club on this or another book surrounding sexuality and chronic pain or chronic illnesses. We could assign a chapter to be read every two weeks. The virtual book club can just be through a post/thread on this subreddit where every other week we can post our comments regarding the chapter we just read.

Other books that I am interested in/ have read:

The Body Keeps the Score by Bessel Van Der Kolk, MD

The Ultimate Guide to Sex and Disability by Miriam Kaufman (Author), Cory Silverberg (Author), Fran Odette (Author)

Thank you!

u/freckled-redhead, your moderator

​

I mean someone responding to you or someone linking to tailored excerpts, because the handful of individuals / maybe coaches for disability I saw, weren't responsive or helpful

And they seemed for physical disability or neurodiversity. rather than chronic pain that brings more ptsd, or pain that's worsened by active social risks, for example

Hi everyone, this is your mod wanting to update you on some things in the works I am hoping can help this community. This summer I will begin a podcast with the same name as the subreddit and focus on the topics around those four words and their combination to form topics: chronic, pain, sex, and talk. For example ChronicPainSexTalk - Pros and Cons of Scheduling Sex/ Pregaming - The Prep work needed for Sexy Time/ Just the Facts! - How to Report the Ailments without the Guilt/Shame OR SexTalk - The Benefits of Talking Dirty, etc.

I will also be videoing the podcasts and putting the videos up and that may have additional graphics for educational purposes. And there will be videos coming out by this summer that are presenting the education I have received in receiving my certification as a holistic sexuality educator, and the wisdom I have learned for being in chronic pain for 20 years and a still active sexual health.

So I am asking y'all what do y'all want to learn, what resources do you need and where are you lost? I have ideas and want to provide the resources, and references. But mainly I want to work with y'all so that y'all can create the tools that help you. Because the manual on how to have sex when you are affected by chronic pain if your personal unique set of tools in their own one-of-a-kind toolbox. No one is the same, and my body is not the same as it was yesterday. So my toolbox needs to also be a transformer and adaptble to future conditions.

My plan on moving forward is I am hoping to be as vulnerable and honest with everyone as I can. I want to show that there are moments where things are wonderful and there times when everything is 10/10 bad. I want to show the world that being affected by chronic pain does not mean your sexuality dies. I want to explain how I want intimacy and sexy times and connection in the face of horrendous pain, because that is what helps me keep going. I think this is true for others. And show how our ever-changing, need-to-be-adaptable sexuality can come in all shapes and forms and levels of kinky-ness. I want to talk about the relationships of those in pain and their caregiver(s) who are also their lover(s)/ parnter(s).

I'm here to listen if anyone would like to discuss their needs or ideas for podcasts, videos, or what tools work for them, they would like to share. I hope you are all having no to low level pain days.

​

​

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Chronic pain... Are there creative ways for me to be comfortable enough to give one.

Hey Y'all your mod here...

I was doing research on BDSM and chronic pain to see if there is any research out there on the two... there are a lot of theses, fluff articles and opinions, but no actual peer-reviewed research. But did find three different research studies that deal either with BDSM and mention chronic pain, or how to understand pain better, so that we can treat chronic pain better.

I found this research and wanted to share how they broke down one's attitude towards pain and categorized into 11 options that people then used a likert sacel (1-5) to rate how much they agreed with the categories.

I found it interesting to read and ponder on... how do I feel about pain in regards to these categories, do I feel the same way about pain at all times of the day, are there more to be added, are these correct?

Vetterlein, A., Monzel, M., Richter‐Hetzer, S., Kapala, K., Geppert, J., Baki, S., & Reuter, M. (2022). Pain sensitivity is associated with general attitudes towards pain: Development and validation of a new instrument for pain research and clinical application. European Journal of Pain, 26(5), 1079-1093

POSITIVE

FASCINATION

Pain is associated with a certain feeling of excitement and thrill. This is not due to the pain itself but rather due to the uncertainty, the risk, the novelty, or even the expected sensation that might come with pain (cf. Dunkley et al., 2020).

Pain has a certain appeal to me and somehow fascinates me

PLEASURE

Individuals with a hedonistic attitude towards pain receive direct pleasure through pain and thus tend to approach pain as a result of learning processes (cf. Dunkley et al., 2020).

I associate pain with lust and pleasure.

CHALLENGE

Following the challenge subscale of the Pain Appraisal Inventory (Unruh & Ritchie, 1998), pain can be seen as a change to develop, to test one’s own boundaries, and to grow.

After experiencing pain, I feel stronger than before.

WARNING FUNCTION

Pain can be viewed as a biological warning function with great survival value (Risdon et al., 2003), not only protecting the body and its tissue from (further)injury (wall, 1929; Walters, 1994) but ‘demand(ing) attention and prioritis(ing) escape, recovery, and healing’ (Williams, 2002, p.439).

I think pain is a valuable warning function of the body.

ACCEPTANCE & STOICISM

This attitude means accepting and enduring pain as something outside of human control (Fraser, 2019; Wicksell & Vowles, 2015). Pain is something that cannot or even does not have to be changed. And, since ‘it is what it is’, pain should be accepted and not fought against (Risdon et al., 2003; Wicksell & Vowles, 2015). Ultimately, pain can be viewed relatively emotionlessly (cf. Yong et al., 2001).

I can hardly influence pain and that is okay.

SECONDARY GAIN

Secondary gain is defined as an advantage arising from physical illness and its symptoms (Barsky & Klerman, 1983). Advantages include, for example, the avoidance of household chores as well as intensified support, empathy and care by loved ones (Bastian et al., 2014). In that sense, pain entails advantages that might lead to a positive inner tendency towards pain.

I enjoy how lovingly and caringly others treat me when I am in pain.

NEGATIVE

TRAGEDY

The evaluation of pain as a tragedy is assumed to be closely linked to strong aversive emotions such as sadness. Pain is the worst that could happen to a person and, hence, should be avoided at all costs. When a (human) being is in pain, they should do the best they can to find relief and others should supply immediate help. This attitude is similar to the philosophic beliefs subscale of the Cognitive Risk Profile for Pain which measures the ‘philosophic tolerability of personal suffering’ (Cook & DeGood, 2006, p. 341).

In my opinion, you do not have to endure pain—not even for a short time.

THREAT

Following the Fear of Pain Questionnaire (McNeil & Rainwater, 1998) as well as the PAI threat subscale (Unruh & Ritchie, 1998), there can be an inner tendency to perceive pain as a threat. The thought of pain elicits strong fears regarding its cause and potential repercussions.

Pain triggers strong fears in me.

HELPLESSNESS

Following the helplessness subscale of the Pain Catastrophizing Scale (Sullivan, 2009), pain is viewed as a stable condition which can hardly be influenced and, thus, is something one is defenseless against.

When I am in pain, I feel defenseless.

OBSTACLE

Pain can get in the way of goal attainment and lead to a conflict of objectives and goal frustration, e.g. through interference with sleep, self-care, social life, work, household chores, exercise, and recreational activities (Karoly & Ruehlman, 2007; Trost et al., 2012). Individuals might, hence, have an inner tendency to perceive pain as an obstacle. The construct is similar to the disability subscale of the Survey of Pain Attitudes (Jensen et al., 1987), however, applicable to a wider population.

Pain could get in the way of accomplishing my goals.

PUNISHMENT

Based on clinical experience, patients with acute or chronic pain often see their pain as a punishment and report thoughts perseveringly revolving around the question ‘What have I done to deserve this?’. This attitude is deeply rooted in religion (Koenig et al., 2001; Rippentrop, 2005; Unruh & Ritchie, 1998) and, therefore, probably more prevalent in elderly and religious individuals.

Pain makes me feel as though I am being punished for something

RESOURCES

Barsky, A. J., & Klerman, G. L. (1983). Overview: Hypochondriasis, bodily complains, and

somatic styles. American Journal of Psychiatry, 140, 273–283

Bastian, B.,Jetten,J., Hornsey, M.J., & Leknes, S. (2014). The positive consequences of

pain: A biopsychosocial approach. Personality and Social Psychology Review, 18(3), 256–279. https://doi. org/10.1177/1088868314527831

Cook, A. J., & DeGood, D. E. (2006). The cognitive risk profile for pain: Development of

a self-report inventory for identifying beliefs and attitudes that interfere with

pain management.Clinical Journal of Pain, 22(4), 332–345.

https://doi.org/10.1097/01. Ajp.0000209801.78043.91

Dunkley, C. R., Henshaw, C. D., Henshaw, S. K., & Brotto, L. A. (2020). Physical pain as

pleasure: A theoretical perspective. The Journal of Sex Research, 57(4), 421-437

Fraser, J. L. (2019). The Future of pain management and research: A dose of fatalism

may be good for one's health. Pain Medicine, 20(9), 1647–1650. https://doi.org/10.1093/pm/pnz047

Jensen, M. P., Karoly, P., & Huger, R. (1987). The development and preliminary

validation of an instrument to assess patients’ attitudes toward pain. Journal of Psychosomatic Research, 31(3), 393–400. https://doi.org/10.1016/0022-3999(87)90060-2

Karoly, P., & Ruehlman L. S. (2007). Psychosocial aspects of pain related life task

interference: An exploratory analysis in a general population sample. Pain Medicine, 8(7), 563–572. https:// doi.org/10.1111/j.1526-4637.2006.00230.x

Koenig, H. G., McCullough, M. E., & Larsen, D. B. (2001). Handbook of religion and

health. Oxford University Press.

McNeil, D. W., & Rainwater, A. J. (1998). Development of the fear of pain

questionnaire—III. Journal of Behavioral Medicine, 21(4), 389–410. https://link.springer.com/content/pdf/ https://doi. org/10.1023/A:1018782831217.pdf

Risdon, A., Eccleston, C., Crombez, G., & McCracken, L. (2003). How can we learn to live

with pain? A Q-methodological analysis of the diverse understandings of acceptance of chronic pain. Social Science and Medicine, 56(2), 375–386. https://doi. org/10.1016/s0277-9536(02)00043-6

Sullivan, M.J. L., Thorn, B., Haythornthwaite,J. A., Keefe, F., Martin, M., Bradley, L. A., &

Lefebvre, J. C. (2001). Theoretical perspectives on the relation between catastrophizing and pain. Clinical Journal of Pain, 17(1), 52–64. https://doi.org/10.1097/00002 508-200103000-00008

Unruh, A. M., & Ritchie, J. A. (1998). Development of the pain appraisal inventory:

Psychometric properties. Pain Research and Management, 3(2), 105–110. https://doi.org/10.1155/1998/709372

Wall, P. D. (1979). On the relation of injury to pain the John J. Bonica Lecture. Pain,

6(3), 253–264. https://doi. org/10.1016/0304-3959(79)90047-2

Walters, E. T. (1994). Injury-related behavior and neuronal plasticity: An evolutionary

perspective on sensitization, hyperalgesia, and analgesia. International Review of Neurobiology, 36(C), 325– 427. https://doi.org/10.1016/S0074-7742(08)60307-4

Wicksell, R. K., & Vowles, K. E. (2015). The role and function of acceptance and

commitment therapy and behavioral flexibility in pain management. Pain Management, 5(5), 319–322. https:// doi.org/10.2217/pmt.15.32

Williams, A. C. (2002). Facial expression of pain: An evolutionary account. Behavioral

and Brain Sciences, 25(4), 439–455. https:// doi.org/10.1017/s0140525x02000080

Yong, H. H., Gibson, S. J., Horne, D. J. D. L., & Helme, R. D. (2001). Development of a pain

attitudes questionnaire to assess stoicism and cautiousness for possible age differences. Journals of Gerontology—Series B Psychological Sciences and Social Sciences, 56(5), 279–284. https://doi.org/10.1093/geron b/56.5.P279

If we're being honest, it's all that we show. Wanted, taunted, let's fuck it, go!

Tell me I'm not only one, just tell me...yo?

No no, really. How do you guys take it? I'm young and at my prime it's just...torture living this way. All together we come just to see how alone we really are. It is so fucked up..

:/

Hey, Y’all I am a sexuality educator and your moderator of r/chronicpainsextalk. I know Valentine’s Day is coming up and a lot of us might want to be a little more amorous this weekend or Tuesday night. I thought I would give a couple of my tips and techniques for preparing for sexy time.

1 - Schedule. Look at your schedule. Do you have an important thing on Wednesday morning? Are you going to be too sore to get it done, can it be rescheduled or does sexy time need to get rescheduled?

2 - Pregame. Figure out what are the best practices for you to have the lowest pain for the longest time to enjoy sexy time: bath, medications, light stretching, relaxation, reading or watching erotica to get you in the mood, etc.

3 - Just the Facts! Learn to communicate with your lover what is going on in your body at the moment and what can and cannot be done this evening, without any shame or guilt! Just list the body issues as facts with no emotion.

4. Check-Ins- it is ok to take a break or check-in. You won’t “lose the mood” and if you do, you can get it back again. Chronic Pain bodies change every second, so doing occasional body scans and letting your partner know, “hey I’ve got about 15 minutes left and I am going to need a break or call it quits for the evening.” Your lover cannot see or feel what is going on in your body and they need to know so that neither of you gets hurt. Miscommunication can lead to someone getting hurt - physically or emotionally.

5 - Breaks - touching or no touching. It is okay to take a short break to let your muscles relax and calm down for a second. However, we do not want to take too long of a break, because then your pain will start to come back (norepinephrine wears off) and we don’t want that. But if you stay aroused during the break the yummy hormones that make you feel good in your decisions (oxytocin) and aroused and in less pain (norepinephrine) will hang around. So to stay aroused during a break you can either touch: - light caresses in predetermined areas that are sensual and arousing, or no touch breaks, where we can talk dirty to keep aroused.

6 - Communication. This is vital. This is hard. This needs practice, but the more you can communicate the better chances you have at having a loving, long relationship.

7 - Dirty Talk. This is not just for fun but is a way of communicating your needs and desires. Everyone I have talked to says they have issues with it, except a professional dominatrix, so don’t feel ashamed if you have trouble. Just remember past, present, future: what you did (just now or way in the past), what you are doing now, and what you would like to do in the future. Example: I loved kissing you on the neck. Ohh, I like it when you kiss my neck. Will you kiss me on the neck, it feels so good? Find your inner sexy voice. And remember moaning counts as communication!

8 - Aftercare. Talk about what happened, what worked for your body, and what did not. What do you want to try in the future? What do you want to do again? Talk to each other right after sexy time while the memory is fresh and you are still saturated with sex hormones and feeling close and connected to this person(s). Many people like to touch and cuddle, some like to be alone and recoup, and some like chocolates and treats. Find what works for you and your lover(s).

If you can’t have sexy time, what CAN you do, try to focus on the things you can do. And if nothing else, laying together touching softly with skin touching will release oxytocin in your body (the I feel good about my decisions hormone). This is one way of connecting.

Hope this help! If anyone has any questions, let me know.

I wanted to bring awareness to the chronic pain community about PSSD. There is a subreddit r/PSSD if anyone is having sexual dysfunction after being on SSRIs and wanted to be part of a community.

The symptoms along with sexual dysfunction (libido, erectile dysfunction, orgasm issues, anhedonia, skin desensitizing, constantly being aroused, etc) can experience depression, anxiety, brain fog and many other symptoms.

There is very little research and there is a movement to change this.

If anyone is interested in helping or want more info please ask me or talk to the mods of this group. They are currently running a campaign to get this information out there.

They are also asking for people to be interviewed by The NY Times for an article, but they are looking for people who were given these meds for reasons other than but depression or anxiety. I told them that would be hard to find because physical or emotional pain is just pain in the brain and if you are in physical pain you probably suffer from depression.

SSRI facts I have learned this past year. (Sorry for the lack of references for this post, but I can get them for anyone interested)

Number one reason people stop taking their SSRIs is sexual dysfunction, even cancer patients, yet no one is telling it talking to them about their issues.

All SSRIs, except 3, are shown to give sexual dysfunction in around 80% of the people taking the meds. And this is based on the little research there is out there so this number feels unreliable to me.

Young people are given these drugs before their brain has fully functioned and who knows what issues this may be causing.

You are told by the medical professionals that you are having sexual dysfunction because of: your depression and thats why you have no sexual feelings, romantic, desirable, of desire, have energy, or a number and combination of this with other factors, But this is not true. The meds we took because of the pain (physical or mental) we are experiencing are causing these issues and it’s being blamed incorrectly.

Most doctors have not heard of this.

I believe there are also two disorders are basically symptoms of PSSD - PDOD: pleasure dissociative orgasmic disorder or PSAD: persistent sexual arousal disorder.

If anyone would like more info please let me know.

-your mod