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Frustration, sadness, and horrible people (pain isn't the only consequence of pain)

Apr 11, 2016 8:05 PM

I've had a really rough 10 years. I managed to injure my spinal chord by hyper extending my back and I never recovered. I have hypersensitivity, so if someone touches my back very lightly, I go into extreme spasms. I have trouble sleeping because if the covers or sheets touch my back, I wake up in agony. I thought things were improving very slowly until about 2 years ago, but then something changed and things got much much worse. I was stuck in bed for about 6 months, alone, and nearly immobilized. At some point my arm felt like someone was trying to rip the muscles apart, at another point it spread to my neck and face, and later my legs started hurting so intensely that it would wake me up and I was unable to walk. That last part was the scariest. I apparently broke my foot while trying to stand up and didn't know for well over a month because my body's pain receptors are so screwed up. I was so scared that I wouldn't be able to walk again.

Things have improved a bit. I have a great doctor, but he told me finally after nearly a decade that this wasn't a problem that would improve in time. He said at any time I could have a flare up and things would revert back to their original level of pain (which was pretty much a year and a half in bed). This was a shock to me. Of course I knew intuitively that this was the case, but part of me held out hope that one day everything would go back to normal and I could live like a regular human being. I've been wrapping my head around the finality at this point, and grappling with what it means for my life. I'm sad, I'm afraid, I'm lonely, and I'm aimless.

There have been very real consequences this time around. I live in a relatively new city (after ~3 years) and had a few sort of close friends, mostly from work. As an adult (in 32 now) it's hard to move somewhere and form the kind of bonds that I have from other times in my life. None of my "friends" here knew me before I had pain, so they don't know what I used to be like (what I'm "really" like). Nearly all of them essentially stopped talking to me, no one visited, and people started trying to tell me what I should be doing differently, despite having zero idea what I'm going through. I had one very close friend who was helpful for a while, but then he moved and our only interactions were over the phone. I've become agitated, easily annoyed, and a total emotional mess. For the people I used to spend time with, this just wasn't worth it to stay close because of the interactions they had with me.

My boss is very understanding, and I work from home most of the time on my schedule (I can't sleep regular hours). My colleagues and former friends are not. One of them told me that I shouldn't be involved in a project because I couldn't spend enough time on it (not true--I have nothing but time for work, just have to do it on my schedule). Last week another colleague who has been nothing but cold to me told me that she hated that she perceived that I always ask for pity. I was shocked. I asked her what she meant and she cited examples where I apologized for having to sit in a meeting when others were standing, where I missed meetings, and made others accommodate my unpredictable schedule. I explained to her that I apologize out of politeness because I feel weird in the situation, and the other stuff I simply don't have control over!! In the mean time, she has told me repeatedly that everything was psychosomatic and that I wasn't doing everything I could to help myself. Of course she has no clue what I do and don't do. Other times she has asked me what meds I'm on in front of my colleagues. I told her that I don't want her pity, and that she has absolutely no right to ask about my medical situation without me prompting it, particularly in public.

The suggestion of psychosomatic causes is so hurtful!!! I don't remember what it's like to not be in constant pain at this point, so I start to second guess everything. Of course I know that this is unreasonable, but I hate that she puts me in the position to even have to justify these things to myself. I hate it!!

There are lots of other incidents and issues...too much to write here. What is hurting me at the moment is that I've essentially lost all of my friends. My family feels terrible for me, but they can only sympathize, not empathize. My colleagues clearly can't even sympathize to a certain extent, and when they try, they cross boundaries I'm not comfortable with.

I feel so alone, all of my relationships crumbling around me. When I got hurt I was in a serious relationship, but it ended within a year and a half because I was changed by the pain and couldn't do the things I used to that made her love me. I just wasn't that person anymore and I was a helpless slave to the circumstances.

I hope someone out there has some advice or can commiserate. I've seen every doctor, pain specialist, and pain psychiatrist I could, and I'm doing everything I can to help with the physical, psychological, and emotional aspects of my condition. But it's hard. Maybe you can give me some insight into how you make things work in your life... It would really help me right now.

My apologies for the length and tone of this post. I just needed to get it out and hope someone will read this and have something to say....

All the best to all of you.

Apr 12, 2016 7:33 PM

Loki, Sorry for the delay in responding, I have been dealing with my own stuff as well. I am so sorry you are feeling very alone right now. You are correct, frustration, sadness,and horrible people are very real problems for someone dealing with Chronic Pain. You are not alone here. So, Welcome. With this group you will find reassurance, support, love, a lot of advice, a lot of venting, we all accept each other UNCONDITIONALLY. So when you start feeling those paralyzing feeling, you can come here and get to know us.. We can be a bit whackadoodles... But hobble on over and sit with us, we got your back. Love and blessings, Terri

Apr 12, 2016 8:52 PM

Welcome to our community Loki! I'm so sorry to hear of your ordeal over the past decade. I understand what you're saying completely. Though our diagnoses & circumstances are different, the outcome is the same. I lived a predominately healthy life until 2007, when I started complaining of various chronically painful issues. Doctors dismissed my complaints for 3 years until the symptoms became so severe I ended up in the ER. Two months later I had a large benign mass removed from my pelvis, along with 4 other procedures in the one. Long story short I've developed pelvic floor issues, vascular issues, hormone, thyroid, and autoimmune issues. I can't work, and it's all I can do to function through the days, among the doctors visits. I've lost friends, abilities to function, can't even imagine what my future holds. At one point i wanted to give up. But coming here has helped.

When I found this community, it saddened me to know others suffered also, some much worse than I ever imagined (like you). But it was also wonderful to find out I wasn't alone, that others understood without preconceived judgement. Through suggestions by others I've received proper diagnoses and tried new treatments & methods of coping. It's taken time to identify my own needs and learn to take care of myself, accepting my new normal me. We can't help others accept us. And maybe their fear of the unknown is what makes them so snarky towards us. We just have to focus on itself and our needs, how best to cope from one day to the next. Take it one step at a time, one day at a time. We are here to help you. I hope and pray as time passes you will get the support and find new friends here as the rest of us. Like Terri said, you'll never feel alone here. Hugs & prayers!! 🙂💕🙏🌼

Apr 12, 2016 8:55 PM

Loki, welcome to the app and community. I am new here just a couple of months. I can relate too much of what you wrote. I still mourn the life I used to have. Everything turned terribly upside down in what I refer to BP, before pain & after pain. I have lived with severe nerve pain for 17 years. I cannot walk without something to hold on to. I don't socialize very much because of my disabilities. And a lot of it is just so trivial to me in my new reality. I have good & bad days. Just lately they have been getting excruciating. My doctor says it will get worse like a stairway going downhill in drops & plateaus.
I can still move around unlike you. I am so profoundly happy they you found the pain group, a place to share your pain, talk about the management tools, the latest medications & their drawbacks, make new friends & occasionally rant or share some joy with us. I will be keeping you in my thoughts .

Apr 13, 2016 9:18 PM

Wow!! I'm so impressed with how much empathy and support you each exhude! I was genuinely worried that no one would respond to such a long and depressing post! This is my first experience with an online support forum, so thanks to all three of you, Terri, Flappys, and Silvrry, for your kind words, welcoming arms, and words of wisdom. I sincerely hope o can reciprocate, so please don't hesitate to ask...ever.

I'll try to post more later about my difficulties in finding an in-person pain support group in Boston (particularly being someone who thrives with direct human contact and emotion), but I hope I can help in some small way to make this kind of format a viable alternative.

Terri, thanks for your warmth and inclusion! You immediately seem like someone who has benefitted a lot from this forum. I hope to hear more at some point.

Flappys, it's actually very helpful to hear some of the details, however small, because it gives me a different set of circumstances to think about, and I hope I can learn from how you approach things.

Silvrrry, it sounds like you may have an extremely analogous story and situation. If it's not too much to ask, could you tell me a little more about your circumstances? Please only do so if you feel completely comfortable!! It just sounds like we are sitting on very similar boats (or rafts) and maybe we can help each other in some small ways. I have the same BP/AP categorization, and more or less view myself as having lived two separate lives, one free and one burdened.

Luckily I can walk around a bit these days, and seem to be much more mobile than I have been in comparison to some recent months. Part of what hurts is that now that I could physically go see the people I used to be closer to, it's apparent how much wreckage remains from some of the more physically limiting periods in the recent past.

It would genuinely make me feel good to help all of you in whatever way I can, so please please please don't hesitate to ask or just to chat to have someone to talk to.

Lots of good wishes to each of you.

Apr 14, 2016 1:59 PM

I'm sorry Melissa. I hope you can find some decent distractions. Any tv shows you haven't watched yet?

Apr 14, 2016 2:35 PM

I think I've watched everything that's been on tv

Apr 14, 2016 2:45 PM

Haha me too! I've watched ALL of Netflix and Hulu. :) this is what happens when you're stuck in bed a lot.

What kind of shows do you like? Sci fi, action, Doctor shows, detective shows, cheesy drama, raunchy comedies, cartoons, horror? Maybe I can recommend something less obvious to check out. I've worked my way through sooooo much good and bad tv over the last 10 years.

I'm here in pain and watching crappy shows right now, so if you want we can watch something together. Or not.

Do you like to read? Or draw? Or play music? I have tons of ways I've come up with to distract myself from the pain. Let me know what you like to do and I'll come up with something! :)

Apr 14, 2016 2:57 PM

I love music crafts ,Western and true stories and murder shows

Apr 14, 2016 3:09 PM

Welcome Loki. People judging and making comments like that is a reflection of what's going on in them. I don't give that stuff the time of day anymore. For me it's family. I don't care what they think. They're not in my shoes. They wouldn't be able to survive a day in them. So I surround myself with those who care. And ignore the bs of those who judge. It's actually quite freeing. If you see it that they're actually showing their nasty character. I'm sorry they put you through that. We understand it here and you're not alone. Hold your head high because you're stronger then anyone who doesn't live with this kind of pain will ever be. That goes for the medical world too.

Apr 14, 2016 3:22 PM

Thanks for the strength Gibber. I know it's their own insecurities and judgmental characters that make them behave in such an unacceptable way. I try to put it in those terms and essentially dropped my ties to anyone who treats me inappropriately. The problem is that for me, right now, that doesn't many people I can actually physically spend time with (really only one or two). Unfortunately, I happen to be the kind of person that absorbs and internalizes the way people treat me. I try to be zen about it when I can, and not reflect their nastiness, but I still find their responses, accusations, and borderline bullying very hurtful. That's what I'm going through. Lots of people are assholes, and I don't want to give them the satisfaction of hurting me, but the fact is that they succeed because I'm pretty crappy at letting stuff roll off me right now. I think I'm on edge in general, so I'm both leaving myself vulnerable and being a little more antagonistic back than I should be.

Thanks for your support. It means a lot. This is all really helpful for me!

Apr 14, 2016 3:42 PM

Melissa,

I assume you've seen Dexter all the way through. That's my fav murder show. What about American Horror Story? Tons of murder there. :). I've been watching Crossing Lines--sort of a weird crime show revolving around the ICC. The first couple of seasons are decent.

Westerns: kind of a strange set of options these days. Deadwood is obviously the greatest western show ever. :). I started watching Hell on Wheels, but it didn't don't for me. Other people have told me it's worth the effort and gets better. Carnivale is kind of interesting and sort of Dustbowl/western. I've been watching a pretty crappy western set in Canada called Strange Empire.

Have you seen Love (on Netflix)? It's actually pretty good.

Also, Prison Break? I loved that show so much!



Crafts and music, huh? Now you're talking my language. I have tons of little crafts projects that I do to keep me busy, so let me know if you need ideas.

Music: when I first got hurt, I was totally stuck in bed. Constant pain, constant meds, constant boredom and a serious need for distractions. I decided to teach myself to play blues harmonica. This sounds silly, but it's like a $5-$20 investment for a decent harmonica (I can send you options). You can order one on Amazon and get it in a couple of days. There are some really basic instructional videos on YouTube. After a day or so of messing around, I found I had enough under my belt to start messing around without sounding awful. Then I found some blues jam tracks on YouTube in the right key. The nice thing about a harmonica is that it's in one key for the most part, so almost anything you play over a chord progression in the right key sounds decent. You get better and better after messing around with it for hours.

The nice thing is you can do all of this lying down if you need to, and it helps you get a little exercise (lots of deep breathing) and totally distracts you. It can also piss off your neighbors and roommates if you play late at night like I did, so you just need to time it right.

Blues is all about improvisation, so you'll be able to come up with little riffs by accident that seem to work, and practice them. A ton of random stuff is totally fine too!

This is one thing that really really helped me! Within a few months, I was actually decent enough to play with some friends (and even played for a little audience a couple of times).

Just some ideas. Let me know if you've seen all of the shows I mentioned, and if you want more or want some ideas for craft projects. :)

Apr 14, 2016 4:47 PM

If you ever need to vent I'm Carrie Go on FB. It's I know.

Apr 14, 2016 9:54 PM

Carrie, thanks so much for the offer! It's really generous. At the moment I kind of like the quasi-anonymity of the forum, but perhaps later I'll feel more comfortable. Again, thanks so much!

Apr 16, 2016 8:23 AM

Loki, thank you! You've joined a great group of people, our pain community 'family.' I've found that by sharing our experiences here, we not only let others know they aren't alone, they're understood, but that our experiences sometimes cause a "lightbulb-ah hah" moment for others. Then they can research and discuss with their docs. I was dx with cervicogenic headaches after someone on here told me that's exactly what I was describing and they had them. I went to the doc and asked about it. After describing to them & being examined it was true. No matter what we may think, everyone here can offer help and advice just because of our own experiences. Hugs & prayers to all for a blessed life pain day! 🙂💕🙏

Apr 16, 2016 11:09 AM

I totally understand. :)

Apr 16, 2016 4:44 PM

Thanks so much Flappys! In a few short days I've realized that this forum has helped me immensely! It's amazing to be able to connect with people who can actually empathize with what I'm going through, even if their specifics are slightly (or totally) different.

You and others have been so warm and welcoming! In trying to give back where I can and tell my story to others so that we can help each other. This is so important, and so helpful!

My sincere thanks to everyone for brightening my life a little in a time of need. Please don't hesitate to ask if there is anything I can do to help!!!

All the best to each of you!

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