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Fibromyalgia and BDSM - 12/20/2007 1:00:50 PM

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Joined: 11/2/2007
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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

RE: Fibromyalgia and BDSM - 12/20/2007 1:32:41 PM

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From: Austin Texas
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I have that and a few other things going on. It does affect me and every bit of my world but I have learned (most of the time) that some things I cannot control and this is one of those things. I've also learned that there is a 'play then pay' sort of thing going on, when I play or over exert myself I end up paying for that for a few days or a week.So I have learned to watch my body for cues, to make sure I get the sleep and proper nutrition and exercise to help keep me strong. There are some things I will never be able to do and I have to accept those as well. A lot of my flexibility has become rigidity so it is very hard to be bound in one position for long. I can't perform oral sex

because of my jaw. My endurance is not what it used to be. My dom reads my online journal every day, he made a spreadsheet for me to track my medications and makes sure I eat properly etc. He really is my support and lifeline in all of this, there are so many that just don't get it. I look fine, I look healthy most of the time and it is hard for others to realise I am actually really fragile and usually in immense pain. If you do a search there have been a lot of threads on this subject, and on Lupus as well. Best of luck to you and remember there are things you cannot control but you can control how well you take care of yourself!

_____________________________

~Love your life! (It is the only one you'll get).

(in reply to ageofhysteria)

RE: Fibromyalgia and BDSM - 12/20/2007 5:50:01 PM

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Joined: 12/3/2006
From: Tallahassee, FL, USA
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greetings ageofhysteria,

i was diagnosed with fibromyalgia a little over a year ago, and i also have a few other chronic pain issues that complicate things, so i can relate. for us, his support in getting enough sleep and being able to handle all the things i have going on is really helpful to me, and his reminding me to take care of myself helps a lot also. we also communicate quite a bit about my pain levels and what i can handle and how i'm feeling, so that he knows when a sensation is causing "bad pain" due to my illnesses so that he can stop if he doesn't want that to be happening.

i have to second camille on the people not getting it. i've had chronic pain problems since i was 5 years old, and i'll be turning 20 this month - the amount of snide and disbelieving looks and just completely idiotic questions, comments, and ignorance i've encountered is phenomenal, so prepare yourself for that. i've found that's one of the hardest things to deal with, so being with someone who validates the fact that you are actually sick can be really important, and also learning to assert yourself and what you need when you are around other people is a really useful skill. there's an awesome website for people with chronic pain called http://www.butyoudontlooksick.com - a lot of the articles and topics on the message board deal with just that issue - being ill and people not understanding - as well as with how to manage a disease that so deeply affects every area of our lives.

if you ever want to talk on the other side, feel free to cmail me :) best of luck to you.

respectfully,
annabelle.

_____________________________

a'ishah (the artist formerly known as annabelle)
i have the kind of beauty that moves...

(in reply to camille65)

RE: Fibromyalgia and BDSM - 12/20/2007 9:45:51 PM

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You were diagnosed and all they gave you was IBUPROFEN? Depending on the severity, i have learned a much stronger cocktail of drugs is needed to be pain free daily (which for the most part i am).

i would not recommend 2 hr bj's. That screwed me up really bad once.

_____________________________

This little girl just wants a Master. Just not any Master, that is.

(in reply to hisannabelle)

RE: Fibromyalgia and BDSM - 12/20/2007 9:52:59 PM

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From: Tallahassee, FL, USA
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greetings sexypet,

hell, ibuprofen is an improvement over a lot of situations...they gave me lyrica and cymbalta, which didn't work, and then they gave me vicodin for a few months, which worked when they gave it to me but wasn't all that great when they stopped, and now they don't give me anything. i swear. even supposed "specialists" are often really idiotic when it comes to medicating stuff like this...a friend of mine's dad has fibro also and was on a lethal dose of morphine every day for pain, and still in unrelenting pain...so then they were like, "oh! he's on a lethal dose! oops!" and cut his dose in half, and then sat around scratching their heads wondering why he was completely senseless from pain at that point.

sorry. just ranting. doctors and meds. i could rant about that all day. LOL! i'm glad things are working out for you in that department, though (and i have to second the 2 hr bjs).

respectfully,
annabelle.

_____________________________

a'ishah (the artist formerly known as annabelle)
i have the kind of beauty that moves...

(in reply to sexypet)

RE: Fibromyalgia and BDSM - 12/20/2007 9:55:28 PM

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Joined: 2/24/2004
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I also have this but mine is an advance case.. I have a higher pain tolerance then most and I don't listen to my body. (or should i say i used to not listen.) Now, I listen it makes me. Mine is so bad there are days I can't walk. Can't sleep as I am in so much pain that even if i lay, sit stand ect ect... it hurts.

I refused to take the heavy duty drugs they wanted me too. I am on tramadol (SP?) every 4 hours, but only take as needed otherwise i try to use over the counter drugs first and then that as back up.

I was told to expect it to get worse, and to also sleep when my body says to. Eating properly is a huge part of it. Loads and loads of veggies, less meat. I also have other problems with it.

Mine is due to being double jointed which is a shame as I love being bent and tied up for hours and now cant take it.

Golden

(in reply to sexypet)

RE: Fibromyalgia and BDSM - 12/20/2007 10:11:51 PM

Aswad

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quote:

ORIGINAL: hisannabelle

then they gave me vicodin for a few months, which worked when they gave it to me but wasn't all that great when they stopped

My sympathies regarding the going off part; it's never fun to quit opioids, even without the pain.
Chances are they'll be more amenable to giving you a buprenorphine patch.
That will do the job, in much the same way, and for longer.
It's also less likely to induce fretting in the docs.

They refused to prescribe any pain meds for grandfather for the reason that they were concerned with addiction. Hell, the man has had several infarcts in the last year, and is nearly 80 years old. It could be considered palliative care. The base of his spine was crushed, many years ago, and they can't cut any more sensory nerves without risking damage to the motor nerves. Lately, it's been getting a lot worse, and it wasn't good to begin with. But we're even more restrictive than the US when it comes to pain meds, so nothing. I did manage to get them to put him on a buprenorphine patch, though. That's apparently less of a concern for them, as it gives a slow, controlled release over a long period of time, and has less risk of tolerance and dependence, compared to pills.

The War on Drugs really should be renamed the War on Patients sometime soon.

Health,
al-Aswad.

_____________________________

"If God saw what any of us did that night, he didn't seem to mind.
From then on I knew: God doesn't make the world this way.
We do." -- Rorschack, Watchmen.

(in reply to hisannabelle)

RE: Fibromyalgia and BDSM - 12/21/2007 3:06:52 AM

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Joined: 4/27/2007
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hello to all. i too have fibromyalgia, but also im hypermobile. i have osteo arthritus and m.e. - people look at me and think and say - u look well - well im not, im in constant pain, i hurt everywhere, and at times just sit and cry about how this illness has took over my life. but on a good side - im a happy girl, i try to see the best of things and enjoy wat i have been dealt. its a crippling disease and i have had it now for 8 years. My masters have been very understanding, and have researched the illness. they no wat i can and cant do, and yes it can be very restricting. i find if i overdue it i pay for it for a day or two, but me being me , i dont care. i only take a few medications, i find none really work. i did a pain management course last year but hey in the real world we all have to work and carry on, so some things work and some dont. keep smiling everyone who has this illness, its hell and it never gets better xx

(in reply to Aswad)

RE: Fibromyalgia and BDSM - 12/21/2007 9:54:13 PM

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Joined: 11/2/2007
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Thank you all very much for sharing your stories with me. It's been a journey this past year (I should mention I have PCOS, arthritis, and Marfan Syndrome too) but I've been working throught it. Yeah, I should mention why I am on just pharmaceutical ibuprofen: I am 110 lbs., Codine makes me sleep for 12+ hours, and Naproxen gives me terrible hallucinations. I do take Codine on very bad nights though.

God bless you all.

(in reply to nailgirl)

RE: Fibromyalgia and BDSM - 12/21/2007 11:43:55 PM

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From: Austin Texas
Status: offline

Oh annabelle I am sorry to read that. It is frustrating and hurtful to have a doctor that won't treat the level of pain you are in. I was fantastically lucky to have found my doctor.I am on morphine daily with extra morphine for breakthrough pain as well as soma. The top dose of Zoloft (which I just switched off, onto Wellbutrin in hopes of finding my sex drive again lol) and several sleep meds. It took a long time to find the exact group of drugs and it was hard work getting on then off so many of them. But.. but.. we found the combination. I do hope that you get a true working relationship going with your doctor. Maybe make a daily pain chart and bring it in? Or maybe you need to keep doctor shopping?My heart goes out to you on this, because I know well the frustration of being undermedicated and also the frustration of hating to take the meds!

_____________________________

~Love your life! (It is the only one you'll get).

(in reply to hisannabelle)

RE: Fibromyalgia and BDSM - 12/23/2007 6:54:02 AM

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Joined: 12/17/2007
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I have read that the stress hormones in Fibromyalgia and ME are terribly depleted by the disease. The bottom line is that a patient suffering with these
complaints should try to make sure their body mind and soul is as stress-free as possible. Very hard to do in the BDSM community where we thrive on
danger (stress) and fear (more stress).

I take my hat off to those wonderful ladies and gents who have written here and who are managing to work, survive and even to laugh through what is
the most horrendous all-body toothache. I just wish the researchers could come up with a cure or at least a good palliative to make life more bearable.

(in reply to camille65)

RE: Fibromyalgia and BDSM - 12/23/2007 8:29:02 AM

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From: Atlanta, GA
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My B-I-L has fybromyalgia among other things, started taking Lyrica....he had a severe reaction, lost all motor control and lost control of bodily functions....stopped taking Lyrica and completely recovered

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"You cannot make footprints in the sands of time if you're sitting on your butt. And who wants to make buttprints in the sands of time?" -- Bob Moawad

(in reply to TisAGoodLife)

RE: Fibromyalgia and BDSM - 12/27/2007 8:07:43 AM

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Joined: 7/5/2004
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Hello Everyone,

my Wife has Fibromyalgia also. Since i am a true subbie and would love to flogged and used hard by Her, it is a problem for us both. She just does not have the energy to do much. Her pain is kept in moderation with meds, and She is also able to sleep with meds, but is tired all the time it seems. So it definately affects us both.

(in reply to ageofhysteria)

RE: Fibromyalgia and BDSM - 12/27/2007 1:34:21 PM

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Joined: 9/21/2007
Status: offline

I do wish you and all the others with fibro well! It is a very difficult thing to deal with and everyone is different. Nothing seems to work for everyone. I would be very concerned with that amount of ibuprofen. Please pay attention to your stomach and try to use milk or food to soften the blow of what this drug can do to you. I don't agree with most of the medications they give for fibro and I am seriously concerned about this new drug they have for fibro. Most doctors don't care or don't have a clue and you must take a major role in your health and knowledge or what they don't care about or don't know can hurt you.

I believe that narcotic's are much safer than most of the anti inflamitories and anti depressants for most people. But finding a doctor who will properly treat you is hard to do. Most do not consider doing testing to assure that medication is right for you and just hand out the medications haphazardly. I know many who have suffered serious ramifications from the wrong medical treatments and medications and this is a major pet peeve for me. So I will stop! lol Sorry...

I find that timing is everything in my world. I can do most things, but not at all times. I play/work, etc. one day and must be down one or two days afterwords. The second day is the worst for me. So while it is hard to plan when you have fibro, some planning or attempt to plan is important. I will take medications around times I wish to work or play and then watch what I do so that I don't have an 'oh shit' moment of overdoing because I was medicated. Go slow... baby steps. But keep in mind, what you could handle one day might not be what you can handle another day.

I keep things at hand. I keep aspercream, a blanket, water, hot pad, etc. close so that if I have overdone, I can get to things I might need without having to move around. I just go with slow and easy until I know what I can handle.

With fibro patients, we grow nerve fiber endings much faster than others do. To me that plays out in more nerves to feel pain or pleasure. It can be both good or bad. With the brain sending out faulty messages and the body responding, you double the fun in trying to manage everything.

I plan for the activity we are doing most of the time, but I also plan for the down time and use that time to follow up on what was done or to devise devious things to do even if I can't do much. I found that having a bed with a headboard and sides that one can push off of or lean against helpful too. I can push myself where I need to move without having to stress already stressed muscles. Keep as active as you can be, because it helps with the pain and keeping yourself fit. Just go slow. If you haven't used muscles, they are going to react to new activity. Find a good fibro site and see what others do to manage in daily life.

Have fun!

FIBROMYALGIA=backwards talkin, fibrowalkin, fibrofoggin, bathroom hoppin, doctor shoppin, pain hatin FIBROMITES!

(in reply to mongocsp)

RE: Fibromyalgia and BDSM - 12/27/2007 4:11:23 PM

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I'm on the opposite side of the dungeon, as it were.

I don't get fibro attacks often but when I do it's difficult to swing a cane or flogger since that hits the trigger points for the pain. I've never wanted to hurt anybody so much that I'd go through that.

I've been down with an attack for a few days and picked up a bad cold and worse cough. Yikes. But a painful experience since every cough triggers the pain points.

Luckily, though, I don't get the attacks very often, for very long, or at very intense levels.

(in reply to HottLicks)

RE: Fibromyalgia and BDSM - 12/27/2007 7:22:02 PM

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To all that are suffering with Fibro, my hats off to you!! I am a massage therapist and work with alot with fibro. I have hear soo many stories of Doctors saying its all in your head, or your searching for drugs or looking for sympathy. And I know that is not true in most cases. They have found in brain scans, the area that deals with pain is more sensitive in people with Fibro than others without. The World Health Organization stated that this was a disease in 1990, Wow and our doctors still have no clue.
What I have found with the help of my clients is listening to your body and learning to say No to things you can not do right now. Trying all different kinds of treatment and find out what works for you, drugs , stress management, massage, yoga , diet and light exercise. Good luck to all

(in reply to Petronius)

RE: Fibromyalgia and BDSM - 12/29/2007 2:22:35 PM

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i don't know why i am always in so much pain, but i looked up the symptoms of Fibro and at one time or another i have been diagnosed with an illness to explain each of the symptoms that could be explained, and the other symptoms were explained with one of the three responses that opensoul mentioned: it's all in your head, you just want drugs (narcotics) or you just want sympathy...so...i am trying to figure out what is more likey...i have these 5 to 10 different illnesses/issues, or i have 1 that is responsible for all the symptoms...and not that i am trying to be my own doctor...but it gives me something to go to my doctor with....because i wouldn't associate all these symptoms with eachother normally....and i have a check up with my nurologist in a week and a half anyway, whom i see for seizures...oh yay, oh yay...but if i can figure out what the problem is, maybe i can get some relief from it...hurting all the time isn't so cool...maybe they will stop taking my blood pressure too...damned cuff makes me cry...that's crazy, huh? i ask people to whip me to blood, and a blood pressure cuff makes me cry....

one to beam, Scotty...
chelle

_____________________________

One thing I know: the only ones among you who will be really happy are those who will have sought and found how to serve. ~Albert Schweitzer

(in reply to opensoul)

RE: Fibromyalgia and BDSM - 12/29/2007 4:41:41 PM

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i've been diagnosed with fibro for 9 years now. (had to think how long, hmm, imp was in kindergarten, that's 9 years now...)

Daddy knows there are certain places he CANNOT touch me, no matter what. and some other places that sometimes he can, sometimes he cant. he protects my lower back with a pillow when he uses the flogger and is careful where he aims. yep, i agree with camille, its play one day, pay 2-3 more afterwards.

recent dr visit has brought the subject of MS up again. of course i dont have insurance again now, so i'm not diagnosed, but the two doctors that examined me said "i'd be willing to bet a paycheck on it" without benefit of the MRI.

chronic pain sucks rocks through a bendy straw. right now i'm doing 2 OTC naprox ever 6-8 hours and benadryl to help with the sleep issues...or lack of it, i should say. i've broken 2 teeth gritting them against the pain. i quite stubbornly refuse to use the cane, or crutches, or wheelchair when i should. i keep looking at it like this....right now i still CAN despite the pain. i'll leave those things for when i no longer can.

muscle tremors, nerve tics and walking like a drunken sailor are the banes of my existance in addition to pain at the moment. i'm dealing.

kitten, who did good on major pain meds, and had no withdrawals from them at all....the docs say that's what happens when your body is USING the meds all up.

(in reply to chellekitty)

RE: Fibromyalgia and BDSM - 12/29/2007 4:41:55 PM

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From: Austin Texas
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Ask for the cuff to be put below your elbow, not above it. That has helped me. As to not being able to find a doctor who can find an answer.. that is immensely frustrating. I would print out the information from sites like mayoclinic or fmnetnews and highlight that which applies to you. Have a detailed list of what pain, and when the pain hits. The more you can bring to them the better understanding they can have of what is mostly a non-understood problem.Print out a trigger point map and highlight that too.It is unlikely that it is all in your head. Chronic pain changes a person and changes their perspectives, that could be what those who say it is in your head are seeing. Not the actual pain. Above all, to anyone. Do not back down, do not accept a diagnosis of 'it is in your head' when your body insists otherwise. Be a proactive patient, it is your body and sometimes you have to make them listen and understand. It took me nearly 20 years to get 'diagnosed' and then another 6 to find the balance in medication.

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~Love your life! (It is the only one you'll get).

(in reply to chellekitty)

RE: Fibromyalgia and BDSM - 12/29/2007 5:43:24 PM

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Try to take as little of the Ibuprofen as possible. After all, I'd hate to see you with an ulcer problem as well. Being that ibuprofen is in the same family as asprin, thinning your blood is also a possible result. Thin blood and scenes can spell trouble.

Other than that and from what everyone else has said, I suggest you come up with a stretch/warm up routine prior to sex, scenes, and other physical activities.

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I'm Godzilla and you're Japan

(in reply to ageofhysteria)

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