RE: Fibromyalgia and BDSM (Full Version)

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LadyDeath07 -> RE: Fibromyalgia and BDSM (1/6/2008 1:24:26 AM)

This is my first time posting here, but I thought to do so because it is something that I also live with. I have suffered with this for many years undiagnosed or misdiagnosed. Whats worse than the pain is having people believe you are lieing or faking it just to get out of doing things (in the lifestyle and out). Alot of the painkillers that were given to me did nearly nothing as my hands ached and crippled on occasion. I would take 3 or 4 times the dosages just to feel some kind of effect..just to be able to sleep at times. It took several years to it to be correctly diagnosed, and even now t seems like Ive been far from hopeful. Stress has always taken it's toll my my family in many different and harmful ways. My doctor told me I should delve into my religion. Well, seeing as how there arent many of my religion around (or at least we are hard to find) I found something else, namely, BDsM. The lifestyle has given me such an outlet for the stress and pain of daily life. My joys come from having session and playing. Drugs and medication are to match for that.
Whatever makes you happy, do it.



camille65 -> RE: Fibromyalgia and BDSM (1/6/2008 5:23:06 AM)

quote:

ORIGINAL: LadyDeath07

This is my first time posting here, but I thought to do so because it is something that I also live with. I have suffered with this for many years undiagnosed or misdiagnosed. Whats worse than the pain is having people believe you are lieing or faking it just to get out of doing things (in the lifestyle and out). Alot of the painkillers that were given to me did nearly nothing as my hands ached and crippled on occasion. I would take 3 or 4 times the dosages just to feel some kind of effect..just to be able to sleep at times. It took several years to it to be correctly diagnosed, and even now t seems like Ive been far from hopeful. Stress has always taken it's toll my my family in many different and harmful ways. My doctor told me I should delve into my religion. Well, seeing as how there arent many of my religion around (or at least we are hard to find) I found something else, namely, BDsM. The lifestyle has given me such an outlet for the stress and pain of daily life. My joys come from having session and playing. Drugs and medication are to match for that.
Whatever makes you happy, do it.

Welcome to the boards LadyDeath. Yes indeedy it is painful having people look at you in disbelief. I am glad that you have found a balance that keeps you going, there are a lot of people who benefit from BDSM although I don't think the AMA recognises it as a geniune therapy [:D][:D]. I know it helps me as well. I understand too that drugs and medication are no match in compared to BDSM for you. For you being the key, as I posted earlier there truly is no one size fits all relief. I've had auto immune problems for *counts on her fingers, it is early and she hasn't had coffee* 28 years. I have reached my balance through a lot of trial and error. My balance has to include pain management achieved through medication along with exercise, proper nutrition and yes.. BDSM. Okies for me it is the DS part lol. Just as it is frustrating to try and explain the pain when you look fine, is trying to explain or justify that some of us need medication. I take a daily routine of morphine, an SSRI and sleep meds. I am grateful beyond words that my doctor and I finally found the combination that gives me the opportunity to have an hour or so of activity a day. Previously I was limited to my bed. I still am to a huge degree but dang that hour? That hour means everything to me.



GoddessTeaze -> RE: Fibromyalgia and BDSM (1/6/2008 2:32:42 PM)

Hello Aall,

I've been diagnosed years ago, at first they thought it was Inflamation on the joints in My back and hips since the birth of My son. But another docter diagnosed Me as having fybriomialgy. I'm a chronical pain patient, but I've always been that, so I rather not take anything for it, then I would. I know ibruprofen is a bitch for ya stomac and read earlier for your kidneys too.. so just when I'm on My worst I would take something, but that's for My headacke or period really.
Other then that, I suffer a lower energy level, and being tired quicker then others. I also notice this during Bdsm play.
It's a bitch really, but when I read other comments in this thread, I consider Myself lucky for being able to do the things I've to do. I wish Yyou Aall well.
and less pain in 2008!

Warm Greetingz

GoddezzT`



MissHarlet -> RE: Fibromyalgia and BDSM (1/8/2008 3:17:09 PM)

When you have bad days and there is no one around that really understands, how do you cope .. how do you take that next step... how do you get yourself to accept that is doesnt make you less of a dominant or submissive or person..... most of the time we combat that and go on .. then there is that ONE day that just freaks us out ..... and I will probably really regret posting this ...but so be it



camille65 -> RE: Fibromyalgia and BDSM (1/8/2008 3:28:04 PM)

quote:

ORIGINAL: MissHarlet

When you have bad days and there is no one around that really understands, how do you cope .. how do you take that next step... how do you get yourself to accept that is doesnt make you less of a dominant or submissive or person..... most of the time we combat that and go on .. then there is that ONE day that just freaks us out ..... and I will probably really regret posting this ...but so be it
 Sometimes I curl up on my bed, I hug my dog and cry myself to sleep from the sheer frustration of it all. Sometimes I force myself to do some self-pampering like a luxurious bath or massage.Trying to separate it from being dominant or submissive was a challenge. I may not say this correctly but I'm trying. It was um, a matter of learning how to accept it. Learning that yeah, I have some pretty heavy limitations and they are beyond my control. Sometimes I backslide because I am a wee bit of a control freak but knowing that I really can't control the fact that I have Lupus, Fibromyalgia, TMJ etc (I always want to type ABC, FBI, ATF at the end of that lol) somehow gives me back control.Jeez it is hard to explain, I guess it is like describing how giving myself to R and fully submitting to him is in actuality freedom.Accepting that my body is fecked gives me strength and freedom. I'm sorry that I'm unable to be more clear and concise on this. I'm actually in  a flare up so formulating things is difficult. I don't even know if I'm typing what I want to say but I'm doing it anyway.Freedom, understanding my limitations.Freedom, accepting and knowing it is okay to crash and burn when I have to.Freedom, no longer forcing myself beyond my physical limits because I want to keep up with everyone else. If you have things you need to say and worry about saying please, please feel free to cmail me. I also keep a journal where I rant and let it all spill out. I don't dwell on it but yes there are some days when it surrounds me to the point where I am unable to see around, under or past it.The flare ups do end, they do pass. Sometimes it takes longer. I hope you know that you really are not alone.



MissHarlet -> RE: Fibromyalgia and BDSM (1/8/2008 3:58:44 PM)

Yes I do know that .. and I know it will pass . and it is more frustration than anything ... and I understand the letters .. I feel like I have the abc or diseases lol with fms .. gout .. menaires .. ibs .. ra  and possibly ms .. I feel like I should sing and say .. now I sang my abc's next time sing them with me!!lol

Its a process .. and seeing this thread helps as knowing Im not alone is one thing but seeing it is not unusual in the lifestyle is quite another ...

Thanks



GoddessTeaze -> RE: Fibromyalgia and BDSM (1/9/2008 2:56:57 AM)

quote:

ORIGINAL: MissHarlet

When you have bad days and there is no one around that really understands, how do you cope .. how do you take that next step... how do you get yourself to accept that is doesnt make you less of a dominant or submissive or person..... most of the time we combat that and go on .. then there is that ONE day that just freaks us out ..... and I will probably really regret posting this ...but so be it
 
Just deal with it how it comes,..
There are better days, and worse..
It's a part of You, which You can't denie.
It will take time to accept it.
Such is life
 
Goodluck with it Hon.
Warm Greetingz
 
GoddezzT`



burningdesires47 -> RE: Fibromyalgia and BDSM (1/11/2008 9:00:49 AM)

I spent years trying to deny how important BDSM was to me, because my fibro just caused so many obstacles. I'm on a treatment protocol to get better, and it is working, but the mind-flip of being able to do things I love has been difficult. I Recently (OK almost a year ago now) realized that BDSM was not something I could ignore, or do without, it is as integral to my sexuality and well-being (in regards to acceptance) as being poly and bi and female is.

I'm finding that my years of the occasional indulgence have taught me more than I realized. I know some things will trigger the FMS, others will trigger the PTSD, but as someone mentioned above, sometimes the pain is soothing, if for no other reason than the knowledge than the pain has a reason for being there.

I am pretty open with potential partners about my limitations. I am also as calm and matter-of-fact about them as I am about my interests and needs. I may not come out and say fibromyalgia right away, but I will mention joint issues, chronic pain, and the chronic blood sugar issues which restrict my diet significantly. I say that Bondage must be carefully controlled, and that I am willing to discuss those controls further. Micromanaging doms don't interest me for a multitude of reasons, only one of which being that I simply cannot trust someone to feed me appropriately. My fiance has been involved in my dietary restrictions since they were imposed, and even HE slips up sometimes. I only trust him as much as I do in my kitchen because everything I can't eat is in one particular drawer!

In fact, a lot of my requirements in a Dominant revolve very much around my FMS, and I have learned to accept that. It is part of who I am, and I need someone who is willing to both accommodate me when I am in pain, and beat the hell out of me when I need it. Trust is a BIG issue, because they need to trust me to say when the pain changes, and I need to trust them to learn my early signals. They need to trust me when I say I can take something, and I need to trust them to give it to me, which may mean taking a bit more direction in regards to HOW that flogging goes than they may be used to.

I'd love to go into it more, but I'm late for work!!



MissHarlet -> RE: Fibromyalgia and BDSM (1/11/2008 9:11:16 AM)

Thanks for shareing .. you have really become aware of yourself and your body and your needs .. your openess is informative and helpful ....



chellekitty -> RE: Fibromyalgia and BDSM (1/11/2008 10:42:42 AM)

an update....i went to see my nuerologist yesterday, and he said it sounds a lot like fibromyalgia, and he said he could treat it, but with the severity of my symptoms he really wants me to go see a rheumatologist, and he has a really good friend (they were in the army together) that only has a month wait typically...so...that's where i am at...oh and i think i might be getting it through my signifigant other's thick skull what it means when i say that i can't do things when i say i can't do things...so things are going better all around....

chelle



Gossamerangel -> RE: Fibromyalgia and BDSM (1/14/2008 9:34:06 AM)

I hate the temptation to use the electro cart in the store, I also refuse as if I can still walk I am going to, the drunk walk and poeple look at you funny, I knock things over in the store all of the time I am such a clutz now. the lack of sleep, the flu like symtoms, eye twitches, IBS its all crazy but as long as I can still kneel and play as well as do things with my kids I will deal with it day by day and move on.



Missokyst -> RE: Fibromyalgia and BDSM (1/14/2008 10:06:50 AM)

I do not know what Fibromyalgia is.. but dang I sure have been hearing that diagnosis a lot in the last few years.  It sounds like an epidemic I hope to avoid.  Give me pain I can identify! A ripped muscle is a permanant affliction I can at least localize to my back, shoulders, arm and lungs.  I don't know how you people deal with pain which has no source.  I hope they find a cure soon.  Perhaps since so many people are now suffering they will start finding options for you all.
Take care,
Kyst



camille65 -> RE: Fibromyalgia and BDSM (1/15/2008 9:06:18 AM)

quote:

ORIGINAL: MissHarlet

When you have bad days and there is no one around that really understands, how do you cope .. how do you take that next step... how do you get yourself to accept that is doesnt make you less of a dominant or submissive or person..... most of the time we combat that and go on .. then there is that ONE day that just freaks us out ..... and I will probably really regret posting this ...but so be it
 My turn [8|]When you have bad days and there is no one around to tell you if your mental fog has leaked your self imposed barriers? When you can't be positive you are making sense either because of the meds, the general exhaustion skewing things or just that weirdness of trying to communicate when in the midst of a yup-it-is-here Lupus flare up? Do you stay silent and away from people?Or do you try and pretend, like a drunk who thinks the cop won't notice that he is leaning at a 90 degree angle? Cus today, right now I am unsure if what I type is organized. Coherent. Grammatically intact or close to. So am I to just roll over to the other side of my bed and watch Law & Order reruns or take the chance that I'm making sense and needn't be isolated?



pamela700 -> RE: Fibromyalgia and BDSM (1/19/2008 9:28:26 AM)

hey there.

after almost 9 years of chronic pain, from both fibro and 7 herniated cervical discs from being a passenger in a car accident...i'm a very proactive patient.

i was on flexaril 10mg 3x/day and went up the motrin/vicodin/percoset/oxycontin ramp for over 5 years. opiod medications do scare some people, but they allowed me to actually be able to sleep, and not get constant migraines, prior to finding a new disc fixing option 2 years ago (a radio transmitter, inserted through a needle, removed some disc bulges and fixed lots of disc tears in my worst 2 discs). i've seen both bad and good pain specialists, physical therapists, and accupuncturists. you've got to find what's right and works for YOU, and not give up trying.

i knew what to expect when i detoxed from the oxycontin at home, by myself (with doctor suggestion, after my miraculous surgery), halving the dosage when i felt i could (it took 39 days to go from 80mg 2x/day plus 1-4 percoset for breakthru to 0mg and 0 percosets). i felt very successful!

i must warn y'all, no one EVER told me about this, flexeril is actually a very close analogue to an SSRI (it's actually an SNRI-analogue). i stopped it abruptly, at the same doctor's suggestion. i had an almost-manic episode after stopping it, while my neurotransmitters realigned themselves. (i'm not bipolar, but i have family that is.) i am flummoxed that no one told me about the possible side effects of stopping flexeril abruptly or at all.

be forewarned!

---pam (happily, i only take advil liquigels a few times a week now!)

p.s. if you need help detoxing from opiates, or with cervical spine issues, message me!





DirtynTopless -> RE: Fibromyalgia and BDSM (2/4/2008 4:52:05 PM)

Wow! I never thought my first post on here would be about fibromyalgia! Lol! I have suffered from FM for the last 18 years, which in reality has felt like 18 lifetimes considering the pain and isolation. Only recently (within the last few months) have I been introducted to BDSM.  After learning a little about it, I thought "What a turn-on, but how can I do this with FM??"  So, to come across this thread on my first day on the forum is VERY exciting!! Thank you all for sharing your stories!

To keep my story short and sweet (if I gave you the long version it would definitely rival War and Peace!), I have tried it all. I have had every imaginable test done, tried every drug, vitamin and herb out there and been to over 30 specialists. As most people have stated, everyone has their own combination as to what is helpful to them. For me, it is Flexeril and Lexapro, lots of gentle exercise such as yoga and Pilates, a very strict diet, lots of vitamins especially Magnesium and all of the B vitamins and the most important (and difficult!) thing of all - Listening to your body!! I was lucky to find an integrative medicine clinic last year, with both M.D's and nautropathic doctors that treat me. They have had me on a very strict "detox" program that is working wonders. I have also started acupuncture for the pain when it is too unbearable to handle. I highly suggest any of these to see if they work for you. Again, everyone is different.

It has been trememdously comforting to find others in the BDSM community that have the same issue. I know as I begin to explore and take this journey, I will come across issues and questions on which I may need advice. I hope that you all will be willing to share any experiences which may help me as well as others.

So, I guess my first question would be, is there a bondage position that seems a little more "FM-friendly" than others?



camille65 -> RE: Fibromyalgia and BDSM (2/4/2008 5:49:25 PM)

Hiya DirtynTopless [:D]Yup there is one that I am especially comfortable in, a bondage swing or a bondage sling. They're fairly adjustable and take a ton of pressure off of me trying to hold a position. I need the support of 'something' and I need help with keeping limbs up.There are also wedge shaped pillows that help when I'm in restraints. We have to be a bit careful to make sure I'm not positioned for too long without taking a break. Sometimes just some good stretching will help.



LostLittleSoul2 -> RE: Fibromyalgia and BDSM (5/30/2008 6:19:56 PM)

Hi there,

also I am a little bit late to reply to this topic I also got kind of diagnosed with fibromyalgia in february this year (diagnosis process not finished yet, but doc assumes it and for me it seems he grasped the point-thankfully).

I had the problem in 2005 that a dom tied me up fairly heavily with his interest into bondage and I wasnt aware about FMS and soon my body felt like being in fire. It was hell and thankfully he realised fairly soon that I am bloody serious to take me out of it. neither he nor myself knew at that time why this was so painful for me in that time and i doubt that he believed it really...also after being released from this bondage some parts of my body were stiff-ish for a fairly long time, therefore, tieing me up like a parcel is out of question for me and my future Dom has to respect that.

For me I have it since at least 14 years and until 5 years ago it was kind of normal for me. I thought it is normal that the body is hurting when you are tired or exhausted until about 5 years ago someone told me, that this is not normal...

then i moved to uk a few years ago and there my symptoms got significantly worse as i started to experience pain at night time and also a stiff back at some mornings where my body needs 10-20 mins just to "wake up" properly. now considering this condition that it gets worse with stress and with not having enough sleep, it is not a surprise to me that it got worse here as due to not-that-great-jobs-at-first i lacked a lot of sleep to pay my bills and life here abroad is more stressful for me. also my diet isnt as good here as it used to be at home (which i currently try to change) and i agree to some comments on here how a little pressure can cause a lot of pain. one of my cats tends a lot (unfortunately) to push her paws into my ripcage when I am lieing on my side of the sofa and also on my shoulders when i lie on my back and depending which point she pushes it DOES hurt. I move her off but she keeps going back on there [>:] also once at uni a mate pushed me into my upper arm to say hello and it was pretty uncomfortable which caused for me now the habbit to think "dont touch me to say hi...."

regarding doctors, i have been at a GP 2006 or 2007 because of my pain and after a blood test did show that i dont have arthritis they werent bothered anymore. once i got back as unfortunately my knee got some problems and dared to mention it again and he just put it down onto my weight and just ignored it when i explained that this pain wanders around in my body and is even sometimes in my upper arms (to show him that his theory does not fit about this pain). however, he wasnt bothered.

now i moved last year and went to another GP to get my blood results; I already didnt dare to explain much anymore as i kind of expected he will put me down anyway (and didnt fancy to mention my bondage example to him *lol*), but he grasped it spot on and went already onto my back before i even mentioned that i have often a stiff neck. He is great and in june my examination continues as for now at first he had to increase my calcium level before doing anything as that makes it worse of course (though i dont get it how i can be low on calcium considering how much i like milk, cheese and yoghurt [&o]).

reading more about on the mayo homepage about the 5 self care points "reduce stress, get enough sleep, exercise regularly, pace yourself and maintain a healthy lifestyle" i unfortunately fail in all of them even when i know i need to change. I want to, but with my lack of discipline it is a real struggle for me to change. Currently a dom on here encourages me to change to the better regarding healthier diet and exercising so I hope i will feel a difference at some point but also i am not in the state yet that i consider taking some of the suggested medication once i get them offered from my GP. Simply because my pain at daytime doesnt bother me, as i am simply used to it since i was a teenager and therefore it is kind of normal to me. the only pain which does bother me is when i wake up in some nights and my back or hip is hurting and i struggle to turn around to release the pain and get up with a stiff-ish back, so once that would become heavier then i take medication but I do hope to avoid it.

regarding
quote:

and at times just sit and cry about how this illness has took over my life
i experienced once that i fell asleep in a really bad emotional mood, though my tears were not about FMS, but shockingly it was one of my best nights i ever had sleep wise. not waking up at night due to pain not being stiff in the morning, it felt like no FMS around at all [:)] but well, dont want to go to be with an emotional breakdown all the time...then i guess i better stick to m FMS.

and yes SweetCaleigh I also experience that my skin on the back of my head hurts at times.

But the good point for me is, since my new GP has a clue what it is i know it is coming from the muscles and not from the bones, i know more what it causes for me (eg once i had a temper tantrum with a train ticket controller and now i know why my whole body was aching soon after that argument as this emotional stress during such an argument simply is not good to me, so I learn at the moment to keep calmer and stay more relaxed and if someone tries to wind me up i cut him or her short to avoid getting deeper into it). Also when my neck turns stiff then i know now why this is and know it will go again at some point. so moving my neck like mad doesnt help, all i need is...to wait. So already with this GP's assumption which seems to be true, he made my life so much more easier....



pinksugarsub -> RE: Fibromyalgia and BDSM (6/3/2008 8:23:14 AM)

quote:

ORIGINAL: ageofhysteria

Hi all,

I just got diagnosed with Fibromyalgia at the beginning of December and I am wondering if any of you have it and if it affects your BDSM lifestyle. It's been okay lately I'm on a 600mg cocktail of ibuprofen every 4 hours and it's not really affecting my daily BDSM life as a slave, but still I want advice because sometimes a light touch feels like stuck with needles.


Thanks,

ageofhysteria [:)]


i'm very sorry to hear this news; fibro is a bytch.  My 1st flare was so bad i was in the ER getting morphine shots off and on for months.  i had to use a wheelchair at times.  i thought i'd go insane from pain at times, and nothing the Dr prescribed ever touched the pain.
 
i think i'm in flare again, but this time it's a low-level, diffuse pain that never stops and is is worse when i lie down.  Along with pain, fibro can and has wrecked havoc with my sleep and my mood.  It's a bytch and i think it's inevitable it'll affect any intimate relationship i have. 
 
My Dom will have to educate Himself about fibro, and understand i can't engage in heavy bondage or some other sorts of play.  He'll have to be supportive and accepting (as some P/pl still insist fibro is 'all in yr head') but then, He'll have His own set of health problems and other issues, like any real Person has, and hopefully we'll be mutually supportive.
 
pinksugarsub



Phoenix2raven -> RE: Fibromyalgia and BDSM (6/5/2008 6:19:57 PM)

raven says:
wow, can i suggest a support group "Masochists Who Don't Like Pain"? that's my joke about living with chronic pain even though i crave pain. ;) i've had CFIDS (M.E.) for 20 years, fibro for 15 years, and degenerative osteoarthritis for 11 years. i have been very, very blessed to find medical professionals who are on top of their studies, especially medical students who are just out of school and still excited about healthcare. i miss my previous doctor (i moved) because she actually sought out seminars about the mind-body connection and chronic pain.

over the years the only meds that have really worked for me are Vioxx and ibuprofen. (i'm hoping they'll put Vioxx back on the market the way they did with Celebrex!) Lyrica effed me all up, made me dizzy and spazzy - i had such high hopes for it though! percocet works fairly well for me, my old dr. helped me find a regimen where i take 1 percocet *before* i know i'll be pushing myself, then another 1 after, plus lots of water and up to 1000mg ibuprofen. my current dr. is ok with that, thank goodness! but i'm noticing in the last few months that percocet doesn't work as well, even if i don't take one for a whole week then try it again. :( i was in a car accident and given dilaudid in the ER, i cried and cried when i realized how much pain i had been in for so long, when the pain was all gone. i know i can't live on dilaudid, but there are days when i want just one as if it's a birthday present!

i use meditation and gentle yoga stretches in bed as part of my pain relief. i've been in and out of PT, currently not even able to do pool therapy because i can't put on/take off the bathing suit *rolls eyes and sighs*, i love physioballs, then again sometimes nothing at all works. even when i take a sabbatical from stress and my Sir helps me with everything, i'm still in all-over pain - that gets very depressing fast, so i opt to overdo it and at least feel like i'm trying.

as for BDSM play ... what works for me is pillows, pillows, PILLOWS! as long as no part of my body is suspended in any way, i'm supported all over, i can hold different positions comfortably. (i love the idea of placing a pillow over the lower back!) Sir's been disappointed in how i can only take the lightest of impact play, and the limitations of positions. we're both polyamorous, so he gets to play with other submissives who can take more, when he feels the need to really *whomp* someone :)

i do fantastically well if i have a light amount of S&M play each and every day, ongoing light aftercare as i drop from each scene, and also picking up the play right away as the last scene fades. it keeps my endorphin level stoked, and i feel awesome! my Sir's chronic back pain doesn't allow for that kind of lifestyle, however. i'm an endorphin junkie :)



sensura -> RE: Fibromyalgia and BDSM (3/30/2009 12:59:19 PM)

Well I have Fibromyalgia its still in the early stages, I have dealt with fatigue for yrs and the muscle soreness and pain Im in daily is getting worse. I have a high pain tolerance and mentally try to block it but it takes so much out of me. I found that tramodal works pretty good, it relaxes me and takes alot of the pain away and helps me to sleep more soundly during the night. My husband and daughter dont understand it  they think when Im in bed all day that Im just being lazy they dont understand that I can only do certain things for limited amount of time, that even eating hurts at times. I cant do hard labour like I used to   even if I do nothing all day Im totally wiped out by 3:oo PM. Im in a fog more often now, sometimes I cant remember things so I keep an agenda of daily things to do. I cant do simple math at times, its frustrating as I feel like Im stupid. It has really hit me hard now  knowing that this will never get better and only worse. I just went thru a week of being in bed most of the time, yesterday was good and today is ok. No one understands this disease cause it is so silent. I find it hard to stick to a routine and even doing all the things that need to be done daily  are almost impossible. Ive broke down crying a few times lately realizing what my life has in store, but I do try to be as positive as possible. I hide my feelings well and because I tolerate pain well its hard to see in me unless Im down physically. I have no one to talk to about this and hope that if someone on here has the time that is also diabilitated with this sickness will message me on here and at least I can talk to an understanding person. Hope that sentence made sense lol.

Kind regards

Sensura



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