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01/28/2012 10:05 AM

Aspects of Fibromyalgia: Pain

hatbox121
hatbox121  
Posts: 11022
Group Leader

I could do a little research and pull all kinds of articles about the varying aspects of FM(pain, depression, fog, neuro symptoms, IBS, sexual, daily living, etc) but I won't. On these particular topics and some others I thought we could start a discussion among ourselves. After all, we know probably more about the impact on ourselves then the researchers do. I'm sure they are figuring out technical and statistical things, but I thought I'd keep this more in a "therapy like" discussion than a technical one. Feel free to discuss it in any way you'd like, but I would ask that you try to add things that helped you with it(heating pad, stretching, muscle relaxer before intercourse, etc), and one good thing about it. Yep that's right one good thing about the bad stuff.

So this time I figured we could start with the pain aspect.

For me, it's confusing. There's so much going on that it's difficult to pick it out sometimes. I do know that I'm sick of it. It varies between achy, burning, tingling, throbbing, well pretty much all of the types! I've always felt it. Began complaining at around 2 1/2 of back pain. It did used to be more sporadic rather than constant at least at the higher levels(beyond a 6). I hate it, yet at this point it's so normal for me. I suppose it's kinda like people in prison. After they've been there a while, it becomes all they know. I guess what frustrates me most about it, is that others don't seem to understand how all encompassing the pain is. It's not like the normal "ouch my back hurts." or "oops I did too much so my arm hurts." Nope, it's oh my whole body.

I usually try to get a heating pad or ice depending on the area/type, or get in an epsom salt bath when possible. Distractions work well with me most of the time too. Things like upbeat music, comedies, reading a good book(though they have to be short now!), messing around in my little flower boxes, stuff like that.

I do know though that always feeling pain has made me, I think, a more empathetic person. Being a weirdo also made me stick up for other people in school who were being bullied and couldn't stand up for themselves. So those are my two good things!

I think that since pain is such an integral part of it all, that we tend to focus on it. I know, your thinking "Well hell you're the one who brought it up!", but I think that by "talking" about various aspects, we can learn from each other and perhaps find good ideas on different things to try. I started with pain since that's the biggie, along with fog and fatigue, but there are other less discussed parts like the painful intercourse that people shy away from. If you have any suggestions for topics, please feel free to PM me or add them on here.

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01/28/2012 11:12 AM
Adewyn
Adewyn  
Posts: 5706
Group Leader

as you all know exercise big part of my therapy as i like to call it.....yes i hurt all the time... but i am not going to let it stop my world.. slow it down on some days perhaps bt not stop it...Intercourse...good topic.... at firs it was hard but now.. it is not as bad.. I put the matress pad on low for me and occastionally take a lexril before hand depending on the day... oth of these seem to help... getting my flexibilty back really has been the key to less pain in this department... thank you for starting this thread Hatbox Smile Hugs and love

Superwoman Smile


01/28/2012 02:38 PM
FibroCFS
FibroCFS  
Posts: 1909
Senior Member

Hatobx, you said "After all, we know probably more about the impact on ourselves then the researchers do."

I cannot agree more. It took the Rheumatology Association 20 years to come up with the new criteria when diagnosing Fibromyalgia and I am thinking, I could have told you that. I HAVE been telling the doctors that.


01/28/2012 03:36 PM
hatbox121
hatbox121  
Posts: 11022
Group Leader

I'm afraid to say that rheumatology in general is years behind. One prominent rheumy said that they were still stuck back in the 1970s. I'm inclined to agree on a lot of fronts. Some not so much, but others, yes. This is one of them.

01/28/2012 04:37 PM
broken
broken  
Posts: 11044
Group Leader

great topic,

pain is all I have known for 12 yrs,I know when I waas younger I had weird thing and really I never felt well,but the major hit me with a sever back injury,

I honetly didnt believe in fibro,not that I didnt believe peoples pain just that when A doc couldnt figure it out fibro is what you were told..now Im stuck real or not its mine,I have to take it one day at a time sometimes a few minutes,on good days I due some lacking house work then wind up yelling at everyone because of fustration,and knowing I cant get it all done..

the worst part is the effect my pain has on my family, and yes my sex life.we due touch on this sometimes but it is a sever problem.for me it sems like my husband wants attention when my head is fustrated with the pain so then I get mad like why cant you see Im hurting sex is the last thing on my mind..but I thought about it..when would be the right time to touch me if he waited till I wasnt hurting well he would be waiting a long time..I guess with age maybe sex isnt as important as it once was,then of course while doing the dead I dont complain about the hip cramping or the legs,the spasm in my arm,he probable thinks all the moving I am doing is a good thing,

but after I relised that my husband thought I was not finding him appealing did I relise it was really effecting him badly,there is nothing about me that feels sexy,I mean leaky bladder,constipation,did I shower today and God knows when I shaved,nne of that seems appealing to me,I mean my God look at my hair good grief,Don King comes to mind,lol..

what I miss is the cuddling, shot when we go to bed Im affraid to move because he will start as soon as I move like kicking my leg was sign for Im horney,WHAT!

but I threw out all my frompy pajamas, and got shorty short tpe one(not like they are a good idea for me)I got low cut shirts.push up bras, tank tops..and sexy but comfy pajamas..I did this to help myself also..if we where nothing but frompy clothes we dont feel dezirable..I also started being touchy with him again.not in the bed room,but I started flirting with him again a brush of hands a ass grab(sorry),rubbing up on him when I walk by..you dont have to have intercourse to have for play it can be an all day thing..but doing this I also relised I started wanting to have sex more,not his amount but enough that he feels loved and I feel lovable.. a saying my sister said tht is so true is" men need to make love to feel ,and we need to feel loved to make love"

but there are times when all of the above go out the window I find my most comfortable robe that looks like my grandmothers and I grab a book to distract myself,lay in bed as still as I can not to show a hint of interest..

the thing about pain that makes me affraid,is as we get older and the normal failing of our bodies take root what will I due,how will I live how will I want to? I have a back problem that over runs my life and running out of pain meds was so bad pain wise I over dosed on pain patches,after 12 yrs that was my low,the one that showed all the doubters yep she's withdrawing because she is an addict..I wish they new how bad the pain ws I would wish it on them I honestly would not for ever but a short time..I find I am jealouse when someone feels good,Why cant I.dont I deserve it? the anger at God set in,but as many know I believe everything happend for a reason thats what gets me through..I swear there better be a reason..the life saver for me is water,I have always loved water I could seriously live on the ocean..I finally talked my husband into getting one of those wal mart pools,ah I love it..that is my exercise and pain relief..


01/28/2012 08:20 PM
ushie
 
Posts: 1928
Senior Member

There are times when water hurts me. There are times when everything feels like it's stabbing/grinding/clawing at me. Honestly, there are times I can hardly believe a human being can withstand this much pain, and yet I am surviving it, and after that flare is done, however long it takes, I can hardly believe that I was in that amount of pain. There are times when I do "baby" myself, and I do worry about hurting myself even more, or falling (again) and breaking my neck (again). But every day I get my ass out of bed and crawl if I have to in order to feed the cats, crawl to take my meds, crawl to brush my damn teeth and hair, because this will not defeat me. Hell, there have been times I have had to crawl from my car to the door of my condo--over grass and up concrete stairs, and then up more stairs--because literally I cannot walk after work and driving home from work, and there have been times I have worried about even being physically able to drive, and times when as much as I try, I can't even get out to the car in the first place. What a life, but it's teaching me things.

01/28/2012 08:23 PM
mabri
mabri  
Posts: 4769
VIP Member

For me, the pain was the last symptom to show up. I didn't understand it, there had to be a reason I hurt...all the tests, xrays, mri's nothing..How could this be? Then, it happened..Diagnosis..Fibromyalgia...

So, here I am today...I have pain almost everyday. I have had a couple pain free days...but then it comes back with a vengence, like I have to pay double for the good days. I get tired of complaining, so I try very hard to just keep going with a plastic smile on my face. This disease is progressing on me, more pain, more often, more places..I agree with broken...what will it be as I continue to age, and age itself makes more pain.

As far as sex...(what was that again?) Oh yeah..I almost forgot...it's been so long..I know...TMI...I also don't feel a bit sexy. I wear either my pjs, or an oversized shirt with my sagging breasts..(How's that for a picture you cant' get out of your head?) I have tried doing the teasing, putting on a silky gown, etc. Once in awhile it helps..I think hubbie looks at me like I'm just a mess, and he doesn't want to touch me. It only happens if I initiate it, and that's not what we want to do. I have to be put in the mood, even through the pain...Oh well, sorry, I'm just rambling now....Let's just say, I agree! LOL HUGS

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