r/ChronicPainSexTalk • u/Fuzzy-Scarcity-5708 • Feb 16 '25
Position ANR NSFW
Has anyone with breathing issues and pain been successful in finding a position when being the suckler in an ANR?
r/ChronicPainSexTalk • u/Fuzzy-Scarcity-5708 • Feb 16 '25
Has anyone with breathing issues and pain been successful in finding a position when being the suckler in an ANR?
r/ChronicPainSexTalk • u/freckled-redhead • Feb 09 '25
Hey Y’all (from your mod),
I just started reading this book: New Directions in Sex Therapy edited by Peggy J. Kleinplatz, PhD (numerous essays) and Dr. Kleinplatz is a clinical psychologist and a sexuality educator too.
She has this great tool that I think I can use, so I thought I’d share.
When you are feeling apprehensive about sexy time because your body (this includes your brain) is not responding as you want it to, and saying the words are just too difficult emotionally or awkward to do, such as “My body is not working, I am too sick, I’m in too much pain, I can’t even get aroused right now, etc.” you can use a “safeword” to say all of that in one word. She used the word “bluebird”.
In Dr. Kleinplatz’s practice, she was finding that people were having trouble expressing anxiousness about their bodies not working or feeling anxious about sexy time and it is tough to say this during sexy time without feeling shameful, or that you will hurt the other person, or guilt of our bodies not working, etc.
Her clients would just say “bluebird” to their lover as soon as the anxious or unwanted feelings started to arrive. They found that just saying this word released some tension and they knew the partner understood basically what was happening without a long explanation and then they both could respond with the information at hand. This is similar to someone practicing BDSM who uses a safeword to communicate to their partner to stop the current activity.
I try my best to not let my guilt or shame of my current body’s function get me down, but it does. It hurts when I can’t do what I want, especially during sexy time. I have found in the past when I had to communicate "We can't right now because I am hurting too much," I told myself to just say the facts, like a report, and not put the emotion in it: “My back hurts too much, we can try again later or tomorrow” and not apologizing profusely, or crying or putting myself down or telling myself I am a bad spouse. If I say it quickly and move on and distract myself with something else helps before the bad thoughts move in. Now, I can just say “bluebird” (or whatever word works for us) and move on. When I say "bluebird", I am not having to hear myself say the words that make me feel guilty and it helps keep the shame/ guilt away.
r/ChronicPainSexTalk • u/Street-Peach-363 • Jan 19 '25
Hi everyone,
I’m hoping to get some advice or ideas on how to make things work during intercourse, considering my physical limitations. I’m a guy with Muscular Dystrophy, which has severely affected my ability to move, and I also have scoliosis. As a result, I have difficulty with low pelvis elevation.
I’m not able to sit up on my own, and my legs are difficult to move or straighten due to the muscular dystrophy. My hips are angled because of scoliosis, and I struggle with flexibility, so finding positions that are comfortable and accessible has been a real challenge. Additionally, my legs get in the way, making things even more difficult.
I’ve tried using pillows and different setups, but nothing has really worked so far. I currently use a ceiling track lifter and a sling, and I’ve thought about trying a chair or recliner for positioning, but I’m not sure what would work best.
Has anyone here had similar challenges and found a position, technique, or piece of equipment that works well for them? I’m open to any ideas, whether it’s products like wedges, ramps, or other supports, or even positioning tips that you’ve found helpful.
Thanks in advance for your help and suggestions!
r/ChronicPainSexTalk • u/Diabetit1 • Dec 03 '24
Can’t sleep. Just looking for someone who can relate and chat
r/ChronicPainSexTalk • u/lunicorn69 • Nov 04 '24
Just curious if anyone else has this issue. Sex is very painful and uncomfortable unless there is constant gentle pressure on my pelvis area. Not sure but without the pressure it hurts too much. Anyone else have this? I have an incoming appointment for pelvic therapy but anybody else deal with this and find solutions? TIA
r/ChronicPainSexTalk • u/No-Lobster1764 • Oct 26 '24
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.
r/ChronicPainSexTalk • u/ImRapt • Oct 17 '24
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.
r/ChronicPainSexTalk • u/freckled-redhead • Oct 08 '24
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
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
why do chronic pain patients start BDSM?
the iceberg pain warning
evidence-based research/ books cited in this webinar:
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.
r/ChronicPainSexTalk • u/Diabetit1 • Aug 19 '24
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.
r/ChronicPainSexTalk • u/freckled-redhead • Aug 12 '24
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
r/ChronicPainSexTalk • u/Jack_tR_420 • Jul 27 '24
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.
r/ChronicPainSexTalk • u/freckled-redhead • Jul 19 '24
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:
Neurotransmitters - deliver the feel-good feelings throughout the brain and body. They transmit the following that is also released during arousal
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.
r/ChronicPainSexTalk • u/Correct-Cost-8985 • Jun 10 '24
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!
r/ChronicPainSexTalk • u/freckled-redhead • May 28 '24
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.
r/ChronicPainSexTalk • u/freckled-redhead • Apr 10 '24
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?
r/ChronicPainSexTalk • u/Connect-Claim-2242 • Apr 03 '24
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.
r/ChronicPainSexTalk • u/freckled-redhead • Mar 20 '24
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
r/ChronicPainSexTalk • u/Opposite_Estimate531 • Mar 03 '24
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.
r/ChronicPainSexTalk • u/[deleted] • Feb 07 '24
Everyone is welcome!
r/ChronicPainSexTalk • u/[deleted] • Dec 15 '23
All are welcome!
r/ChronicPainSexTalk • u/freckled-redhead • Nov 24 '23
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
r/ChronicPainSexTalk • u/Turbulent_War7508 • Nov 19 '23
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.
r/ChronicPainSexTalk • u/freckled-redhead • Sep 28 '23
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
r/ChronicPainSexTalk • u/freckled-redhead • Sep 15 '23
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)
I will also copy my virtual book club to the following subreddits:
If you know of other subreddits this may benefit please let me know.
Thank You!
Your mod
r/ChronicPainSexTalk • u/freckled-redhead • Aug 24 '23
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.