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Who do you talk to?

Mar 04, 2016 4:38 PM

Hi guys, I'm new here but I've joined this group because I am feeling like no one around me understands. I have constant fights with my family because they think I'm faking my pain, because it "happens at convenient times". My partner although he tried so understand and keeps asking me if I need anything all I have to do is look at him and I see in his eyes "not again". I feel very alone, tired exhausted. My pain tends to become worse when I get upset, which is a lot these days. The doctors are doing what they can as is my physiotherapist and my psychologist..... I guess I just struggle for people to talk to and I get frustrated because I jumble my words without noticing and things don't come out right then I am ridiculed for it. Which is when my frustration goes sky high!
Maybe I am the only one that cannot control their emotions, my psychologist is trying to tell me opposite I guess I just need proof and ways to manage from people who have been there

Mar 04, 2016 4:53 PM

First welcome home all of us here are or have walked in your shoes. You are not alone here. We all get the sleepless nights due to pain we get the fatique and the hurt of not haveing family support. I have a hard time with my emotions too lately. I've let stress over take me and now I'm starting to get a handle on it. Bit I still work at it. Frustration and anger is part of the game but we are all here to help u play it. I understand not haveing the family support but over time they will come around. Try inviting them to your de visit and show then websites and paperwork on your illness. Be as kind and as gentle as u can but keep pushing you'll find a way to get to them

Mar 04, 2016 5:16 PM

I am parallel to you! I get you! I'm in the same boat even! I am so happy we have this group to feel safe & understood.

Mar 05, 2016 3:16 AM

I find a therapist a wonderful resource. I had to reaearch to find someone and see one who does not take insurance but she is worth every penny. I think you should look for a cHronic pain support group. It helps if you can bring a nonbelieving spouse with you to a doctors appointment but only one who takes you seriously and respects you. Support groups are also good because sometimes you can bring loved ones to them, or they can refer you to a support group for caregivers. I am lucky, I finally got my mom to come around and understand how ill I am and I am able to talk to her. I also go on several forums and apps and read a few blogs.

Look up "spoon theory" and make sure your loved ones read it.

Mar 05, 2016 6:45 AM

Thanks guys, I really appreciate the feedback!! I have a psychologist who thankfully takes my insurance who is great, just a bit hard to fit everything into an hour ever few weeks! I think my biggest problem is I'm so self conscious I now worry when in public! The amount of weight I've put on is ridiculous... But hopefully things through insurance will start getting approved and I'll be at least allowed to start some form of fitness!

Mar 05, 2016 8:23 AM

Welcome Kickpain, I have found this group very supportive. I have not found a chronic pain support group in my area. I do go to counseling and my counselor is very understanding and provides good direction. But I do not go often due to finances. I find my family does not understand and I spend my time trying to not make them feel uncomfortable around me so I try very hard to act "normal" for their sake. It's hard. Life is hard. And it seems that every time I turn around there is a new problem which brings a new diagnosis. I prefer to think that this is just a season in my life and this too shall pass with the Best yet to come! Peace and Grace.

Mar 05, 2016 10:58 AM

Shyia, I read the Spoon Theory. I appreciated it . It was spot on!

Mar 05, 2016 2:48 PM

Hi, I'm new to this and am crying reading your post. It's like you're talking about me at the moment. I have stopped saying that I'm in pain and just push through it but that is making my pain worse. I feel like everyone thinks that I'm exaggerating. My husband is trying to understand but sometimes I think that he thinks that I'm just lazy.

Mar 05, 2016 4:25 PM

Hi everyone.
It's so great that you're all here.
I have mega symptoms . . . and even though I've had all the tests, was diagnosed by rheumatologists, neurologists, orthopedists, so many I don't remember, I feel guilty about my symptoms. Even though I take my meds, eat, rest . . ..
Who do I talk to? No one, I see people glaze over, or change the subject within one sentence. They don't want to believe it or hear about it. Particularly my dad.
Many days of the week I wish I weren't on the planet.

Mar 05, 2016 4:34 PM

Hi I am a qualified counselor and with my condition I feel I have even more empathy towards others although none towards myself as it seems is the same with you all. It is difficult to have to learn to let go of who we were and accept who we have become. Even worse when others can not ir will not admit you have physical and emotional issues now.

Mar 05, 2016 4:42 PM

You are so right.
Grieving. Only recently realized that's what I've been doing. Think I'm stuck in denial and anger at myself. But realizing that, maybe I'll start to move along a bit. Thank you.

Mar 05, 2016 4:45 PM

I guess that's why we're all here, because none else understands like those living with it do. It the same with any issue.

Mar 05, 2016 5:45 PM

I haven't let go. I haven't grieved. When I look in the mirror I am the same me. It's the inside of my body that is reeking havoc on me. I have gained a great deal of weight because of the steroids I take. And I have lost some hair because of the meds or disease my doc doesn't know which. As soon as I have difficulty maneuvering I find someway to modify my world so it's not so noticeable. I do not want to grieve... I want my old me back. Call it denial call it what ever... But I haven't given into this as my new normal... Each day is different.

Mar 05, 2016 5:55 PM

MySister'sKeeper, hi. How long ago were you diagnosed?

Mar 05, 2016 7:16 PM

At first I talked to friends and family. My friends slowly faded and I got tired of the look in my families eyes so now I try to just talk with my couselor.

Mar 05, 2016 7:21 PM

Good thing you have a counselor you can talk with for understanding.

Mar 05, 2016 10:21 PM

I still have some good days every now and then, which sometimes I hate because I do everything I can in the day and then I pay for it much worse for a week or so until it slowly gets back to this new "normal". I have a new group of pain management there's an OT a physio and a psychologist who all work together which are great. I guess the biggest thing I've learnt going through this is the more educated I am the better off I will be. My physio has explained I need to fly below my pain threshold because if I go over it I'm pretty much all out of options other than rest. I'm always very focused on "it could be worse" but in actual fact sometimes the pain is so bad I tend to push myself to not worry about how bad other people have it and focus on me but then feel bad about that! It's such an emotional roller coaster. My partner does the best he can to understand but there's only so much he can do.... He's constantly asking what he can do and because there is very little he can do he gets annoyed.... Hard to understand for people who haven't suffered. :( I wouldn't wish this on my worst enemy.

Mar 05, 2016 11:12 PM

Kickpainsbutt, you read my mind! Every sentence you wrote is from my life. Right now I am on a 3 day getaway we do annually with a group of eight. I am hurting so bad. I try so hard to be the same as the others, but I am no longer like the others. I am aching to be home where I can howl if I need to. These are wonderful old friends, but I just want to weep. Walking is becoming very difficult. I can't sleep.

Mar 05, 2016 11:16 PM

Tell me about it Silvrrry!! Right not I'm on a 3 and a half hour drive with my partner to go and meet his baby nephew that's just been born! It's killing me being in pain! I cannot get comfortable we drive half hour then stop then drive half hour again and stop again... I completely understand why people haven't got the patience with us... Hell I am frustrated to the core! But what can we do? Hang out until we get home to our own bed and knock ourselves out on pain killers! Oh the joyyyy!!

Mar 05, 2016 11:50 PM

I'm used to be a crisis line volunteer until they closed it down locally. I spoke with so many people in chronic pain, especially on overnight shifts. Now, I'm in chronic pain. If you have a local line, you do not need to be in crisis to call. Call to vent, call to get referrals, call to cry. The person you speak to may not suffer from chronic pain, but they will listen, they won't offer unsolicited advise, and they will not judge. If you have one in your area, it might be worth a try.

Mar 06, 2016 4:02 AM

Thanks for asking KickPainsButt. I agree with everything you say. My family is so used to me always job hopping that they said it was in my head. Truth is I have resigned from jobs just before i reach the max points for attendance to be terminated. I have had a dozen jobs in 15 years. My experience and my work ethic has gotten me outstanding employee awards. But then the pain sets in and i struggle to complete my routines. My concentration issues kept ne from meeting deadlines. It wa not that i was lazy but because the fibro fog and adhd made it take longer to accomplish tasks. Looking back i see these symptoms started when i was in the navy. But i just stayed and finished my assignments before i went home. Some nights i just stayed on the ship working all night.
I have 3 nurses in the family and they all think i would be healthier if i moved to florida.
I got 2kids in high school so that cant happen for at least two years. Until i get my SSDI i cant afford a 2 bedroom appt.
In this group we talk to each other so you are in the right place.
Welcome to the group.

Mar 06, 2016 6:36 AM

I jumble all my words without noticing either my brain and mouth don't link out quick enough I don't realise till my girls start laughing at me hurts kinda over it now chin up your not the only one I do it everyday 🌹

Mar 06, 2016 10:17 AM

dlwc58 - calling a crisis worker is a great idea. Thanks for letting us know we can call a local line & don't have to wait until it's life or death.

May 05, 2017 9:44 PM

I have a therapist I see every week I talk to. Even then I don't necessarily say everything. I used to say everything to my wife but she would get angry at some of the things I would say. So I just don't talk about my issues anymore. I just bottle them up and berry them deep inside. I know it's not the healthy thing to do. But to scared to let the whole truth out. 😞

May 06, 2017 10:23 AM

If anyone is interested, I admin a support group on Facebook for anyone who lives with chronic illness or chronic pain, or for anyone who loves someone who does. The name of the group is "Coping with Chronic Illness/Pain" and the link to it is: https://www.facebook.com/groups/880299938751016/

May 13, 2017 1:59 PM

After 11 yrs I'm now finally learning to stop being so angry at the pain that it was making me very bitter & lash out at all. Learning to accept it & life is little easier now.

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