RE: Fibromyalgia and BDSM

Join Our Community

Collarchat.com

Home Login Search

RE: Fibromyalgia and BDSM

View related threads: (in this forum | in all forums)

Logged in as: Guest

All Forums >> [Community Discussions] >> Health and Safety >> RE: Fibromyalgia and BDSM

Page: << < prev 1 [2] 3 4 next > >>

Login

Message

<< Older Topic Newer Topic >>

RE: Fibromyalgia and BDSM - 12/29/2007 5:44:41 PM

Posts: 2933
Joined: 6/19/2006
Status: offline

i have had fibro for a number of years now and in the beginning i would get episodes of pain that seemed to all of a sudden disappear. Now there is constant pain, some days better than others as far as that goes. i had a prescription for vicodin and took it for a long while. i never got "high" from it, i suppose because it was being used up to reduce the pain. i also never went through withdrawl from it - not that i am aware of at any rate. They had me on muscle relaxers - flexaril was one of several i tried - didn't do much for me. i now take aleve (440 mg) and arthritis strength tylenol (1300 mg) every day, sometimes twice, depending on what i have to get done. i also take xanax when needed - i use it sparingly as i don't want to become dependant on it. a bottle of 90 pills (1 mg) will last me usually 4 months. It helps me to relax enough to get some sleep. Tried cymbalta - did nothing but reduce my sex drive.

What i found was the SM helped me with relieving stress which helped in reducing my overall pain - i had a sense of well being when i was being S&Med regularly lol. Enduring the good pain helped ease the bad pain - weird.

i never knew that the blood pressure cuff hurt like a bitch because of my fibro, thanks for that bit of info, i thought i was just a big baby and it was because i had big arms.

i have seen the commercials for lyrica but i am not jumping on that bandwagon quite yet... maybe in a couple of years when they get the bugs worked out. i don't want to be anyones guinea pig.

i have some great sites for any interested - unfortunately tonight this computer is slow as shit so i will have to post them another time.

_____________________________

Religion is for people who are scared of hell, Spirituality is for people who have been there

(in reply to camille65)

RE: Fibromyalgia and BDSM - 12/29/2007 6:06:54 PM

Posts: 59
Joined: 4/22/2006
Status: offline

I have been diagnosed as well over ten years ago. i never heard of such a thing. i got it after my 2nd neck operation from ruptured discs.

Mine goes in cycles. One part of the year it was so bad it was hard to walk. It was in butt all the way down to my feet. That was one of the worst times. Sometimes i don't realize i am in pain until the cat walks on me and i jump out of my skin because it hurt so much. Yesterday after i washed my hair in the shower just under the skin on my head hurt all day. i take Tylenol Arthritis formula and that seems to help, but of course not enough.

It's not an easy disease. It mimics Lupus, Lime Disease, MS and various other diseases and of course the doctors all want to rule those out first. Costing you loads of time and money and agony.

i just wish the people that know me really knew how i felt rather than looking at me with a puzzled face and thinking that i am full of fluff.

Shesh! Maybe we should start a support group here on Collarme! LOL!

i wish all of you luck and wish you well for a better, healthier New Year.
*sweet caleigh*

(in reply to camille65)

RE: Fibromyalgia and BDSM - 12/29/2007 6:41:07 PM

Posts: 77
Joined: 11/24/2006
Status: offline

So many do not understand the pain that people, mostly women ,but a few men, go thru each and everyday. I have explained it to some of my clients husbands,in the following way. Think about playing football in high school or college, You get an injury, alot of pain. You take a pain med for a few days and then its over. Well with Fibro, its never over, it just maybe lighter one day, bad another, but NO sleep, no rest at all, everyday is pain somewherein your body, then think, no meds work completely, no one believes you are in pain and the docs tell you to your face you are full of it.
Where do you go, doctors don't know how to help, your family after awhile stop believing and you are still in pain.
I hope somewhere soon doctors will start to listen to you all, My prayers are with you

(in reply to SweetCaleigh)

RE: Fibromyalgia and BDSM - 12/29/2007 6:49:22 PM

Posts: 5
Joined: 3/22/2005
Status: offline

I found this thread to be so true. My husband calls it hypochondriac's disease. I don't whine about it or anything and rarely mention it. I just live with it. Though one night I fell down the stairs and thought I had broken something so went to the dr. Nothing was broken thankfully, just badly sprained. The painkiller that doctor put me on was FANTASTIC! I had no idea how much I actually do hurt every day until the pain was briefly not there. That's one thing I like about the lifestyle. I like to have the hell beat out of me.. just so I know something really has a reason to hurt. I like to stay in denial, I refuse to have fibro... refuse dammit! Doesn't work though.. *sigh*

(in reply to opensoul)

RE: Fibromyalgia and BDSM - 12/29/2007 7:42:26 PM

Posts: 1779
Joined: 2/16/2007
Status: offline

*nods at emeraldmaiden*

i had an abscess lanced in september, and the doc gave me a goodly dose of morphine to help the pain he was going to inflict on me. i started crying once it took effect....because i didnt realize how bad the "everyday" pain was till it wasnt there. he gave me extra painkillers after he heard that, and after he'd tested my reflexes (which dont respond, that was the big neon light to both doctors suspecting MS plus i already have a history of brain involvement).

some days just stopping sounds so damned good...

kitten

(in reply to emeraldmaiden)

RE: Fibromyalgia and BDSM - 12/29/2007 7:55:44 PM

Posts: 5746
Joined: 7/11/2007
From: Austin Texas
Status: offline

Forcing yourself, not using pain meds when you need them can be detrimental. The body has to rest sometimes and when it is in constant bad pain that won't happen. So it is very possible to be doing yourself a disservice by 'toughing it out'.When I do that I end up paying even more for a longer period of time. But yes. Sometimes? Stopping just sounds so fucking peaceful. Heh I think that's the first time I've cursed on this board

_____________________________

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

(in reply to adoracat)

RE: Fibromyalgia and BDSM - 12/30/2007 1:05:20 AM

Posts: 1319
Joined: 2/18/2006
Status: offline

i haven't read the answers so if i repeat somebody pardon me. There is a drug out there called Lyrica. Might want to find out about it if nobody has mentioned it.

Good luck..

(in reply to FangsNfeet)

RE: Fibromyalgia and BDSM - 12/30/2007 1:07:55 AM

Posts: 3923
Joined: 3/27/2005
Status: offline

quote:

I had no idea how much I actually do hurt every day until the pain was briefly not there.

they gave me a shot for pain for an abcess than needed to be lanced (they didn't figure it out at that hospital, i had to go to another hospital a couple of days later, and then to a doctor a couple of days after that...horrid situation...) and the shot killed the pain in my entire right leg....and i poked it and pinched it for hours because i thought it was numb and i wasn't safe to drive...but that wasn't the case, i still had feeling, i just didn't have any pain...it was so drastic it was scary...i know what you mean....

_____________________________

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 emeraldmaiden)

RE: Fibromyalgia and BDSM - 12/30/2007 1:40:29 AM

teesa

Posts: 5
Joined: 3/9/2007
Status: offline

I don't suffer from FM. However I do have a close friend that does and she sent me a story that helped me to better understand it.

This is an imagination exercise, which can easily be enacted in reality by someone who really wants to understand you - though it's recommended that it be tried at a non-critical time for employment, etc. Required materials: a box of plastic spoons. You guide the person through the exercise thusly: Imagine that, every morning, when you wake up, you are handed a bunch of spoons. Every time you do something which requires any effort and doesn't replenish your energy, you have to give up one of the spoons. When you are out of spoons, whenever during the day that may be, you have to go back to bed for the day. Pause for reflection. Then point out that the number of spoons will not always be a large one. It's fairly easy to get through the day on twenty-five spoons, for example. But there's no way to predict the number on any given day, most of the time; it's not even necessarily related to anything about the previous day. You could have fifteen, and then thirty, and then eighteen, and then six, and then twelve, and then two. And there are days when you just plain don't have any. At this point, some people will understand. Others will brush you off - it's unpleasant, but it happens with health issues, it just does - and others still will want to try it out. It should be pretty clear how you show them what this is like. I recommend plastic spoons, just in case some get lost. But it really can serve as a wake-up call for those who want to understand but have spent their lives taking good health for granted. I tried it with my then-boyfriend (now wonderful husband), and he really gained a huge amount of understanding from it. I also tried it with a grad school roommate a few years ago, and it worked wonders for our friendship and understanding of each other. Sie Shonogan on livejournal.com

I hope this helps someone in some way. My friend also has a sit for a book she has started to write you can visit at
http://afibrotale.googlepages.com/home.

Be well all and my prayers are with you

(in reply to chellekitty)

RE: Fibromyalgia and BDSM - 12/30/2007 5:29:47 AM

Posts: 33
Joined: 6/19/2007
Status: offline

I am not suggesting it is a miracle cure by any means but please do some googling on Magnessium and Vitamin D. Most people in the West are chronically short of both these important nutrients.

(in reply to teesa)

RE: Fibromyalgia and BDSM - 12/30/2007 5:45:16 AM

Posts: 2933
Joined: 6/19/2006
Status: offline

This is something i keep on my refrig door...... to remind others who don't always undertand... it's from http://fmscommunity.org/lettertonormals.htm

Open Letter To Normals

These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.
Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.
Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things.

But most importantly, I need you to understand me.

Here is another one...a bit more emotional: http://www.fibromyalgia-symptoms.org/QA/answers-see_this_letter_to_normals_to_explain_the_pain_to_friends_and_family/

< Message edited by velvetears -- 12/30/2007 6:04:10 AM >

_____________________________

Religion is for people who are scared of hell, Spirituality is for people who have been there

(in reply to male2shemaid)

RE: Fibromyalgia and BDSM - 12/30/2007 6:16:07 AM

Posts: 651
Joined: 7/22/2006
From: Atlanta, GA
Status: offline

quote:

ORIGINAL: winterlight

i haven't read the answers so if i repeat somebody pardon me. There is a drug out there called Lyrica. Might want to find out about it if nobody has mentioned it.

Good luck..

My brother-in-law has FM and he was given Lyrica. He almost died from a reaction to Lyrica, according to the Mayo Clinic. He lost all motor control, could not even feed himself from the spastic way moved, slapping himself in the head, slapping his dish away, etc. His organs began shutting down and he couldn't help pissing himself. When he went to Mayo Clinic they thought he had a brain infection with a short time to live. The first thing the did, before a planned spinal tap, was to flush his system with a high volume flow IV. After about 2 days he made rapid improvement. The Mayo Clinic doctors told him that the pharm company says that there is a 1% chance of bad adverse reaction to Lyrica, but they knew that was WAY off from the cases they have seen there.

So, IF you take lyrica, be prepared to recognise adverse reactions before they become life threatening. It might actually help some people.

_____________________________

Old Bastard

"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 winterlight)

RE: Fibromyalgia and BDSM - 1/2/2008 2:29:18 PM

Posts: 1779
Joined: 2/16/2007
Status: offline

quote:

ORIGINAL: camille65

Forcing yourself, not using pain meds when you need them can be detrimental. The body has to rest sometimes and when it is in constant bad pain that won't happen. So it is very possible to be doing yourself a disservice by 'toughing it out'.When I do that I end up paying even more for a longer period of time. But yes. Sometimes? Stopping just sounds so fucking peaceful. Heh I think that's the first time I've cursed on this board

i agree, not treating the problems is detrimental.

so is not having health insurance. *wry smile*

kitten

(in reply to camille65)

RE: Fibromyalgia and BDSM - 1/5/2008 6:21:48 PM

Posts: 2728
Joined: 9/11/2005
From: El Paso , TX US
Status: offline

This is a real issue for a lot of us and often is not the only health issue and that complicates things immensely. I find that for many of us, we have a hard time listening to our bodies and slowing down. Hearing "but you look so healthy" or " you are just lazy " is hurtful and frustrating .. especially when it is from those that live with us or are supposed to be the ones that love us.

I take so many different meds that I feel like a walking pharmacy.. and some work for a while and then dont and the search is on again. The key is to not get complacent and keep communicateing with your Doctor and makeing them listen to you. If they dont find another.

Yes, playing often means that we will pay the next day or so .. but we know that and make the decision it is worth the pain. Its life.

Its is great to have the support of others going thru this and I for one am happy to know that there are more on this site that I can share with and hope that others feel free to contact me at anytime even if just as a sounding board on the frustrations. It helps to vent with someone that understands.. truly understands

_____________________________

Protectress of hearts/souls of all submissives calling Bounty's Place home, by order of Bounty~Proprietor

To be respected you must be respectful, to be loved you must be willing to love,
to be trusted you must be willing to trust.

(in reply to FangsNfeet)

RE: Fibromyalgia and BDSM - 1/5/2008 6:54:28 PM

Posts: 763
Joined: 6/17/2007
Status: offline

Not to change the subject, but I have arthritis and gought. I (Right now I have a ice pack on my knee) and understand what all of you are saying.
May all of our journeys be better because we have each other.
Respectfully, LTP

(in reply to MissHarlet)

RE: Fibromyalgia and BDSM - 1/5/2008 7:20:09 PM

Posts: 2026
Joined: 12/29/2006
Status: offline

It's important to remember it's not a disease, but a pain state of tight tissues. So, any exercise/stretching you're forced to do regularly will help, as well as the endorphins of orgasms.
Painrelievers other than anti-inflammatories do worse than nothing especially if addictive narcotics which down your mood even more, and if you read the info on lyrica, it's only slightly better than placebo [1/3rd of people with fibro responded just as well with placebo, which reminds us it's not like arthritis.].

For me, it was a swedish exercise ball after 3 years of physio that finally did the trick. If I get lazy and forget my crunches/exercises or decide a travel-size one is too bulky for my luggage, I at least get a warning knife-like ache to remind me to do better. It's an easy cycle to get into: pain/no exercise/sulk/more tightness/more pain/no exercise/whine/more tightness/depression.

So if you're not doing physio and an exercise program that's more than just walking [you need something that moves you in all 3 dimensions, like aquacise], you're not allowed to whine or complain.
Move it! Guaranteed you'll feel better in 6 weeks; if you don't get off your ass, guaranteed you'll feel worse.

your choice.

(in reply to liketophoto)

RE: Fibromyalgia and BDSM - 1/5/2008 7:58:58 PM

Posts: 2728
Joined: 9/11/2005
From: El Paso , TX US
Status: offline

I also have gout with my FMS and several other diseases, it doesnt help to know that the gout is often triggered by my not watching my diet... thus I cause my own pain. I sympatise with you .... when it hurts it hurts !!

_____________________________

Protectress of hearts/souls of all submissives calling Bounty's Place home, by order of Bounty~Proprietor

To be respected you must be respectful, to be loved you must be willing to love,
to be trusted you must be willing to trust.

(in reply to liketophoto)

RE: Fibromyalgia and BDSM - 1/5/2008 8:44:25 PM

Posts: 11
Joined: 12/19/2007
From: New York City / Babylon The Great
Status: offline

My partner (Goddess Sapientia) has FM (we've been together in various ways for 1.5 years). I admit that I didn't understand it very well at the beginning, but becoming so much more aware of the mind/body connection, as it relates to "happiness" has made me a better lover.

Also, She has found that massages and other tactile things helps a lot.

(in reply to MissHarlet)

RE: Fibromyalgia and BDSM - 1/5/2008 10:48:31 PM

Posts: 1992
Joined: 12/3/2006
From: Tallahassee, FL, USA
Status: offline

greetings all,

"spoon theory" is originally from http://www.butyoudontlooksick.com - it's an excellent website and resource for chronic pain sufferers and their family/friends.

greetings tantriqu,

unfortunately, as someone who's been through physical therapy a few times, on two different exercise ball regimens, and exercises (not just walking) regularly...it is NOT a reliable cure for many people. it helps me - i'd definitely feel worse if i didn't do it some days - but i have still suffered from debilitating chronic pain for 15 years.

respectfully,
meg.

< Message edited by hisannabelle -- 1/5/2008 10:53:06 PM >

_____________________________

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

(in reply to nysian)

RE: Fibromyalgia and BDSM - 1/6/2008 12:56:46 AM

Posts: 5746
Joined: 7/11/2007
From: Austin Texas
Status: offline

I too went through 3 years of PT and it worsened my TMJ. There is NO one-size-fits-all cure for these problems, if that were true then there would be very very few sufferers.Some people get by well without any medications.Some people must have medication to get by. There is no shame in needing medication, it does not mean you whine or that you are lazy. All it means is that your body doesn't respond to the same thing that another body responds to.

_____________________________

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

(in reply to hisannabelle)

Page: << < prev 1 [2] 3 4 next > >>

All Forums >> [Community Discussions] >> Health and Safety >> RE: Fibromyalgia and BDSM

Page: << < prev 1 [2] 3 4 next > >>

Jump to:

New Messages	No New Messages
Hot Topic w/ New Messages	Hot Topic w/o New Messages
Locked w/ New Messages	Locked w/o New Messages

Post New Thread

Reply to Message

Post New Poll

Submit Vote

Delete My Own Post

Delete My Own Thread

Rate Posts

Collarchat.com © 2024

Terms of Service

0.156