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Posted 3/19/2011 1:02 PM (GMT 0)
I have friends and family that tell me to suck it up, to deal with the pain and try not to let it get you down. Now how in the heck am I to do that??? I am not a whiner, nor do I really tell people when things are bothering me but there are times that I will say, this hurts or that hurts. But I have them say, "Oh yeah. I hurt there too but what can you do?" Like it's no big deal.

I have been in pain for a very long time and I often wonder how I have managed to keep my sanity. Not only do I have this Fibro pain, but also have arthritis and Uc. So if it's not my joints, then it's my Uc. I won't go into detail what Uc is for the ones that don't know what it is, but I will say that I have, at times, extreme abdominal pain and cramping. And to make things worse is that I can NOT take pain meds because I have a wacky body and I am allergic to a great number of things.

There are times that I just feel like screaming at the world because they just don't get it! But I just paste a smile on my face, try to be positive but really I feel like I am dying on the inside. I just want to crawl into a ball and not move ever again. But I can't do that either because it will hurt. Btw, yes I am seeing a therapist to help me deal with this.

Sorry, this is sort of a vent post. I just get so darned frustrated at times. cry
Posted 3/19/2011 1:34 PM (GMT 0)
Hi Sherry,

My name is Jen, I am new to the Forum. It's very nice too meet you. I understand part of what you are going through. The Fibro part is what we have in common. My Fibro pain is so bad this morning, I had to get out of bed and move around. However, that didn't help, so here I sit in my recliner crying because the pain is so great and have nothing to take for it. I need to call my Rheumatology doc and ask for something besides Lyrica for pain until the Lyrica kicks in (if it ever does). I'll put that on my "to-do" list for monday along with everything else my family expects of me because they can't see the sickness (or whatever you want to call it) of Fibro, so to some of them, it doesn't exist. I'm discovering that a lot of people have the mind set of "If you can't see it, it doesn't exist". Boy are they wrong; especially when it comes to Fibro.

I, like you, paste a huge fake smile on my face so that I can go to work and face the cold cruel world on a daily basis. Which actually is what brought me to this website. Hoping to be able to talk to people who "understand" me and don't expect me to suck it up and deal with it, when I just can't do it anymore.

Thanks for being here.
Jen
Posted 3/19/2011 2:50 PM (GMT 0)
We are always having to 'suck it up'. That is what is so nice about this forum, we can share here. All of us feel sick on a daily basis. But do we complain to others? No, because we can come here. If somebody told me to suck it up, I would probably punch them. lol... I would want to anyway. There are so many that don't understand our health problems. But we are the ones who have to deal with them. So come here and vent. We all understand.

Hugs, Karen
Posted 3/19/2011 3:00 PM (GMT 0)
Yeah Sherry I treat it like another symptom of Fibro. If they don't have it, then they really don't get it symptom. I am sorry you have to go through this. Just keep coming here.

Bay
Posted 3/19/2011 3:43 PM (GMT 0)
Hello and welcome, it's nice to meet you. I suffer and have been suffering with fibro for about 20 years now, finally found a great doctor that gave it a definitive diagnosis. Like everyone else, I push through the pain and try my best to be "normal" and I'm not even sure I know what that is anymore. I hurt all the time and can't remember when the last time I really felt great. I had to move from my doctor because of the illness and not being able to work. Now relocated I am seeing a doctor an dlast week he basically told me the same thing. Suck it up. In his conversation he actually tried to make me feel like all this was brought on by me and I am the only one that can fix it. I have been on LTD and SSDI. My LTD carrier wanted an update which he refused to sign and now wants to put me through another test of his own to see what I am able to do. He says that I can turn it around if I want to. Well, like everyone else, I wonder just how I am suppose to control the pain that slams me down every minute of every day.to lean on.

Good luck to all of us. Great to have eachother

Posted 3/19/2011 4:38 PM (GMT 0)
It is terribly frustrating, I know.  The problem is, they really DON'T get it and they never will unless they develop fibro themselves.  BUT, people could demonstrate a little compassion.  That would be refreshing. 

 

I'm blessed because my children have watched me in pain all of their lives between the Crohn's and fibro so they know I'm hurting and will try to help as much as they can.  I rarely ask for help but when I do, they are right there because they know I really need the help.  Friends?  I lost a 32 year friendship over fibro.  Another friend I have doesn't have a clue what I'm going through and I'm tired of trying to get her to understand.  So, I don't mention health at all...will not discuss it, either. 

 

Doctors don't even understand what is causing this illness so how can they really help us?  We are under the impression that you can go to the doctor and they can "fix" you up, but they can't.  They are as much at a loss as we are and so we do have to be our own advocates with this illness.  We do have to try various things until we find what will help us control the pain.  Notice, I didn't say get rid of the pain.  That hasn't happened to me in 24  years except when I was in the hospital getting morphine. 

 

Another problem is that we not only look just fine but also our lab work and other tests come back totally normal.  Now, let's face it.  If we were doctors that never had fibro and were presented with patients that looked great and all tests came back normal, we would probably think it was all in their heads, too!  I do understand that but it doesn't help me one iota. 

 

We here on this forum KNOW this pain is real and now there are doctors catching on and realizing we truly are in pain.  If your doctor isn't one of these, then fire them and find a doctor that is trying to help fibro patients.  We are now getting some "respect" in the medical community.  It's a slow process but it's finally coming.  With this, hopefully some brilliant doctor will figure out what is causing this and then they can develop medications that will really help us.  I'm sure praying for that day.

 

So, everyone, take one day at a time, look forward to each day with anticipation, check out all the good things going in your lives, and take time to smell the roses.  I do think help is on the way.

 

Sherrine

 

 

Posted 3/19/2011 4:46 PM (GMT 0)
Thank you Sherrine, You brought me back down to a good breathing level.

Steph

Posted 3/19/2011 4:58 PM (GMT 0)
Minny, I'm glad I helped you.  I won't post on your thread because I'd be saying the same thing.  No, it's not fair that we have to go through this but it is a fact of our lives.  You know, when I was first diagnosed, it was called fibrositis.  I had never heard of this illness and neither had anyone I knew.  Now, people are starting to hear about it and there is a ton of info out there on fibro.  So, yes, I really do believe we will get some understanding and help...hopefully soon.

 

It's frustrating, angering when people we expect to help us brush us off instead or just treat us like there really is no problem.  I've done plenty of fuming over the years too!   mad    But now I do have a doctor that tries to help me.  Of course I won't take all the stuff he has suggested.  I'm a stubborn old gal!  I think looking on the bright side of life helps me the most...that and my faith.  I feel that if we allow suffering to define us, it will determine our attitude and behavior and make us miserable, and everyone around us, too.   So I really try to focus on the good things in my life and try to ignore the bad, as much as I can.  I do smile a lot and that really helps, too.  Plus, that makes everyone wonder what I've been up to!  turn

 

You just take one day at a time and enjoy each day to the fullest.  It won't come by again!  Have a great day today, okay?

 

Sherrine

Posted 3/19/2011 5:26 PM (GMT 0)
I'm betting nearly everyone in this forum can relate to this topic.  If I say something is hurting at work, my boss's wife will say, "Well, we are all getting older, I hurt sometimes too."  She will not say fibro isn't real, she knows better.

My sister as much as told me she doesn't believe in fibro.  She said it's something the doctor labels us with when they can't figure out what is really wrong.  Funny thing is, my new doctor, never having seen me before, diagnosed it right away, then added he will figure out which arthrits we are also dealing with. 

It's not in our heads.  I say hey, if we can go out looking perfectly healthy, then more power to us!!! smilewinkgrin

Posted 3/19/2011 6:56 PM (GMT 0)
I just want to say thank you to all of you for sharing. It helps so much.
Bay
Posted 3/19/2011 10:32 PM (GMT 0)
Welcome to the newbies! I am sorry that you had to seek the group out because of you health, but glad you found us. I don't respond a great deal, but I do read and get restored on the bad days!

When I got really, really sick with mono and it sent me into a fibro spiral, I had to resign from my positions at church. I could no longer play the piano............I would suck up the pain, but then I could not do it anymore. I also had to give up a lot of other responsibilities. Due to lack of respect and them thinking I was blowing it out of proportion, I lost a church family. I have not lost my faith in God, just learned not to put a lot of stock into many people. (that was a hard sad lesson, but I have come out on the other side and have grown from it.) 8)

When my sister realized how bad my pain was, she gave me a lot of emotional support. I was busy decorating with my family for my daughter's wedding. I was talking to someone and my sister came up and circled her hand around my wrist. I screamed out in pain and started to cry. She felt horrible, but truly, she had not applied much pressure. I told her that just touching my skin that day was like hitting me with sticks. My younger sister doesn't get it and most of my extended family doesn't either, but those that do get it are treasured as gold!

We just have to learn to not let it kick us in the teeth too hard when other's don't get it. I don't think that I would have 'understood' if I did not have the experience.

I tried to explain it to my mother in law who is in her 70's and has her own health issues that sometimes, there just aren't any boot straps to pull yourself up with. (I love her and she tries to understand, but I don't think she fully get's that point.) We pull up by the bootstraps so often, that sometimes, those bootstraps are broken or just don't exsist anymore.
Posted 3/19/2011 11:55 PM (GMT 0)
It's one of the very worst things about fibro, I think. We "don't get no respect!" Oh well.

We give eachother enough to go around, though. Some days you can give, others you need to just be a sponge and soak it up!

Debbie
Posted 3/19/2011 11:55 PM (GMT 0)
.....not suck it up!!
Posted 3/21/2011 1:15 AM (GMT 0)
Thanks everyone :) I am so so glad I am not alone in this! I really am truly glad that I can come here and "talk" with people who understand.

Me and my husband went away overnight to my in laws cottage on the river. It was pretty darn chilly out but it was nice to get away. We are having rain right now and my whole body is achy, crampy and some parts are puffy. So I am counting down the minutes until I can get myself into my nice comfy bed! :)

You all have a good night and remember, tomorrow is another day! Hopefully a low pain day!
Posted 3/21/2011 2:13 AM (GMT 0)
Hi, Red,

I am late to the forum, but I really want and need to chime in. I work w/a group of people that are not very understanding. One actually trys to mock or make fun of me at times; however, my boss is also my friend and she won't allow that. Still I feel the disrespect and you must be a hypochondria attitude. I don't say anything about hurting, but sometimes I use a cane, and sometimes I move very slowly. I also have severe OA and EOA, and am looking into a chairlift for my home. I can't go out to a restaurant and sit comfortably to eat if the chairs are hard. I never know if I am going to have enough energy to to do what I intend to do each day. I struggle to work, and it is not a pleasnt experience. I sleep most Saturdays to catch up and ease the pain. Seems like I never get enough sleep during the week. My elderly folks live w/me. They don't understand. How could I hurt more than they hurt, right? They should be counting their good fortune instead of making light of my pain. Don't bet me wrong. I love them, and sometimes my mom will do a couple of things for me. BUT, she is 76 and feels better and gets around better than I do, even on my good days. Whew! That was a long rant. On a positive note, I have a wonderful husband who is very caring, and I have my faith and my church family. I take one day at a time. I appreciate this forum and all of you wonderful people who do understand.

May God Bless You All,
V
Posted 3/21/2011 2:28 PM (GMT 0)
Hey Sherry you are not alone!! I have the same 3 as you do, only my IBD is Crohns. I swear if its not one thing on any given day, its another.

I wish that disability wasn't so hard to get. Drives me batty because I have an older sister who is on disability and the only reason is because she can't get around because she is too FAT. Here I sit and suffer in one way or another everyday, but its like pulling teeth to get disability.

Oh well sending gentle hugs and understanding your way. Hugs!
Posted 3/21/2011 2:29 PM (GMT 0)
Until my husband's back collapsed and he is now on SSD, I got the same thing from him. Now he understands everything because he's been through the 'Oh, my back hurts too' thing when what he has is a whole different animal - just like us. And like most of us, I learned pretty quickly not to expect any sympathy. The worst of it is it causes us to withdraw. I have one friend left from when I worked because when she introduced me to her husband she said, "This is so & so I used to work with. She's disabled. I know she doesn't look it but she is." Those were the most vindicating words I have ever heard since I was dx 13 years ago and I still love her for it.
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