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Living Nightmare...Fibromyalgia & Interstitial Cystitis

Feb 13, 2017 1:06 PM

I wish there was a magic wand musselsuld b used to let others know how painful Fibromyalgia & Interstitial Cystitis truly is. I hate that others think all it consist of is having to pee more & sore mussels as if all I have done is had a little to much water & had a hard workout. When I was diagnosed 10 yrs ago I had no idea how these conditions would progress so rapidly & change my whole world. How it would steal me from not only me but my family & friends. People dont understand that we were forced to learn to work & smile through the EVERY day pain. Just because we look like we are fine doesn't mean we are. We should be at the Oscars accepting the award for best actress. I went to school for a nursing degree & cant do what I luv because my bosses doesn't want an employee that spends more time in the bathroom or at a dr office then with their patients. Or being so tired because last night I couldn't get any sleep cause between getting up every 20 mins to pee & the insomnia ( no matter how tired I am) & the pain through out my body. I sometimes feel so alone just cause no one understands what I live with day in & day out. Theres NO escape! All I can do is pray tomorrow will b better & know that theres others that have it worse then myself.

Feb 13, 2017 2:34 PM

Jamie07, I am sorry for your plight. There are many here that have the same conditions along with others. You're in a community of wonderful people who are wonderful to chat with and we all understand that struggle with daily pain. It's not easy but it can still be a good life. It's a choice we all have to make for ourselves. Welcome aboard and I hope you find the support you're looking for. Know that you're not alone and there is a plethora of information on older threads if you search through them by topic. Sending well wishes your way!!πŸ€—

Feb 13, 2017 2:46 PM

Thank u for the warm welcome & well wishes. I have been struggling alone for 10 plus yrs. I just happen to come across something about thus app & decided to give it a try. I hope I am able to find support from others that r living with chronic pain.

Feb 13, 2017 3:59 PM

Jamie07 Holy crap. did you find the right place. Lots of people who post of all ages 12 to 60+.πŸ˜ƒthis last fibro flare has lasted since before Christmas. I finally feel better & more hopeful today. Yes I have pain every day plus relapse of Type I I diabetes plus IBS plus anxiety/depression plus plus plus...I've listed just a few and yes I have lost friends my connection to my church, my job as a nurse (didn't even feel like renewing my licence this last time), and my husband & son most of the time think I'm lazy & attention seeking. I see MSW whole specializes in EMDR therapy addressing past trauma so I can finally stop grieving. Wow that's a lot to throw out there. Thank you for being honest in your venting as it touches a chord in me for someone else who understands.πŸ’“πŸ’•β£

Feb 13, 2017 5:24 PM

Tamtoad2. I have been in & out of therapy for more years then I can remember. I have PTSD, anxiety/depression, borderline personally disorder I havent tried EMDR therapy but would like to know more about it. I never felt like therapy has ever been much help. I can talk about it till the cows came home but it doesnt take away the memories & pain that r trapped in my head. Im sure u understand what I mean. I also didnt renew my license this past time which kinda makes me feel like I lost who I am, but why pay to renew when I know I wont find a job that will b flexible & understanding of my health issues on a daily basis. I to have lost my connection to my church (but not God) and my friends. My husband & son ( and other family members) think I fake or over exaggerate my pain or limitations & since its invisible I cant say look how bad my.... (Fill in the blank) is. I have had over 60 operations & I'm only 39. I dont look sick or disable so its hard for someone to understand how much pain I am always in. If its possible Id like to know more about EMDR. Thanks so much.

Feb 14, 2017 5:37 AM

Hi Jamie and welcome to the crazy family πŸ˜‰
Everyone here is very supportive and caring, we also come from all over the globe so it may take time for people to respond depending on their time zone.
Unfortunately the nature of the battle is some days are good and some are not so good but you need to look for the joys in each day to help you thro.

I hope your day is better today

Feb 14, 2017 10:33 AM

Welcome ... You have landed in a soft place here. I agree we all should have Oscars for our performances.

I read thru your night. Omg what a nightmare you must be hitting the 15 out of 10 on the fatigue scale. .. I have some of the same conditions as you but the getting up to pee constantly .. big hugs is all I got.

Glad you are here!

Feb 14, 2017 7:38 PM

I understand. Relinquishing my nursing license was (and still is) very hard. You worked so hard for that license and now it seems all that work was pointless.

I think the grieving of life before chronic pain (from whatever source) adds to the pain sometimes. Not sure how to fix it, but it feels that way sometimes.

Feb 14, 2017 8:33 PM

Welcome, I too have both Fibro and IC and in a deep flare currently. This is a safe place to vent if needed and pick up some good self help tips along the way. Most importantly it's a place where people just get it and boy do we all need to be around someone who just knows how you feel. My IC is prettt well controlled, let me know if I can be of any help to you. Be well β€οΈπŸ™πŸ₯„

Feb 14, 2017 8:47 PM

Like all of you I lost my career to fibromyalgia and an additional disabilities. Mine was chronic DAILY migraines and cluster headaches and they became daily and have been since 1995. But try getting it through people's heads when, "it's just a headache!" No respect. Especially when half the world gets migraines and everyone's niece has a solution that will instantly cure you. Ten years ago after 15 years of daily pain and 3 headache clinics 6 top neuros, etc. I had a GYNECOLOGIST doing a PAP smear with my legs in the stirrups tell me she could cure my migraines. She'd just take me off all my meds. Didn't bother to read my history for the past 35 years of migraines at that point and clusters just wanted to quick and dirty tell me she could be God and fix it. Don't know how many doctors I've seen on acute issues who have started to try to "solve" migraines.

But enough of my rant...,LOL There is a website.called Butyoudontlooksick and they are on FB as well and you might look up thespian theory as a way to explain to people how your energy levels work as a disabled individual. There's also a book out that I think is called You don't look sick. And the "Invisible Project" by the US pain foundation. Give them all a look see.

Feb 14, 2017 8:49 PM

Sorry it is the "invisible project" at the US pain foundation. I think autocorrect killed it.

Mar 07, 2017 12:01 PM

Jamie07
Google it for a complete description of EMDR therapy. My therapist has found a modified version called brains potting. You can Google it too. Not feeling well so not too chatty. Gentle hugs, Tamtoad.

Mar 09, 2017 11:46 AM

Sorry another auto correct kill I just noticed. NOT the thespian theory...man it was a bad few days... the spoon theory! I dealt with the whole, she's faking it, over exaggerating it, being a drama queen thing for years and it's hilariously ironic that now I'm on the other end with all of these people and have the choice to be rude and do the same, or be the bigger person. And I just can't be as cruel as they were to me. They didn't know what it was like. I do. My standard response comes down to, "pain is pain. Everyone experiences and tolerates it differently. It's all bad. It all hurts. We need to have compassion and care for those who are feeling it because they are going through a tough time and hope that THEIR pain has an END." LOL My daighter and I have now pretty much got this down to verbal shorthand between the two of us...pain is pain...and in unison.. and everyone experiences it differently. LOL πŸ˜‚ It lightens up a bleak atmosphere just a bit.

Mar 11, 2017 10:16 AM

The person who swore to love me till dealth do us part was the first to fail me!' He didn't believe me about my pain . He was never supportive of routine in the household , cooking , cleaning anything like would lighten my load. I didn't attend parties. My need to be home and not socialize upset him.
Some days I would nap after work he would walk in and say " your mom is asleep, again?"😟
I was diagnosed in 2010. Sometime last year he started to plug in....πŸ™„
It is too late for me.
I've learned to keep him at a distance with my aches and needs . I don't ask for help . When he tries to help or be positive it drives me INSANE!!! He swears he worries about me .... too late!
The worse thing is not having support from spouse.
I'm over it and him!
It's the hurt that doesn't heal .
I don't look sick so I should not be sick , right..

Mar 11, 2017 11:06 AM

I'm sorry you have reached that point of bitterness in your relationship. And I truly understand. My husband spent many years giving me "lip service" and yet leaving everything to me. I got so exhausted and frustrated as the house got more and more filthy and he would just sit in it! If I wasn't killing myself to clean and do things, he felt perfectly justified to sit on his ass and fo nothing but yell at the kids or impose restrictions on them that I would then have to enforce. I am certified disabled and have an income for it because I'm not fit to work and can barely pay bills or could watch the children. But I didn't LOOK sick. God forbid he should get the flu though.,,I was immediately supposed to wait on him hand and foot?

Yeah I built ip a lot of the same resentment even though he "understood" mu disability.

But after we split up because of the isdues in oir marriage for whatever reason, we still had children together... And as my very wise 20 something daughter keeps reminding me... he's my daddy momma and I love him, whatever he did in the past. I'm not gonna stop loving him, and bringing it ip mow just make the relationship harder for mo reason. And you ragging on him all the time hurts me because I love him...
So...I can rag here...so can you 😘

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