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Don't read this if you don't like long, self pity posts.

Mar 06, 2016 3:43 PM

I have had crps for 7 years, I've accepted that I have it and its never going away, but yet accepting it hasn't helped my emotions about it what so ever.
When I was 11, I didn't understand what was happening to me, I just knew I was in pain. After getting diagnosed about a month after the pain started (which I was very lucky to be diagnosed so early) they wanted me to start PT. I remember going to my first appointment, and the man telling my mom that he can't help me because I was in too much pain to handle the exercises, so we went home. By this time it was about a month before Christmas, but my doctor wanted me to go to a program that was 2 weeks in patient and 1 week out patient. For obvious reasons I asked to wait till January because I wanted to be around for Christmas. I was happy to be home, but then a week before Christmas our house got robbed and they stole my Nintendo DS, which being 11 was the coolest thing ever, they also took some Christmas presents that were under the tree. I became super depressed, but for some reason not because we were robbed but because of my crps, Im not sure why, but I was. And that was the first time I felt depression over my illness.
After I went threw the program I was walking again, and things were going back to normal except I couldn't be in gym class or recess (which I hated both anyways) the rest of the 6 or so years after that things were okay, I had flare ups but they never lasted to long and things were good. Then fast forward to today, I've been I'm a flare for close to 8 months now, I had to move back in with my mother after I finally was starting to feel independent, I had to quick my job, drop out of high school, I have lost all my friends, I never leave the house. My crps has spread to both legs and my stomach, I haven't been able to eat or drink in about 2 months, I'm confined to the length of my feeding tube. Not a signal treatment has helped me. Even being on 5 different strong opioids going threw a picc line didn't even affect me at all. Now I just sit here and wait for a call from a doctor, the last call he told me I could be waiting for a month to a year, maybe even years, before I can get any treatment because my insurance is fighting the doctors saying I don't need any treatment. I'm skipping back into depression, I notice how easily I can hide it though...no one notices, and I don't want them to. Im so depressed that I can't even cry, if that makes sense at all. My doctors have to me that I need to prepare myself for a life of being in a wheelchair. I'm only 18...I feel like Ive lost everything. I was so independent, I was out of my mom's house, I had a job, I was making money, I even bought a turtle, I felt so independent I felt like I was finally making something of myself.
When I was in high school, I was hardly even there because I was always staying at home, or in the hospital for one thing or another, I was so jealous of my friends at the time, when I dropped out I only had enough credits to be considered a 9th grader when I should have been in 11th. Everyone was getting their license, planning for colleges, and I was sick, depressed and jealous.
When I started being independent I felt like I was going to make up for my high school times. But now I'm falling behind again. I still haven't got my GED, I still haven't even got my temps.
I feel like a failure, I feel that I've failed my life, and I just want to give up....

Mar 06, 2016 4:18 PM

Hi Jenna, I don't know what it's like to have CRPS but I do know what it's like to be in a powerchair 24/7, I'm quadriplegic and I can definitely empathise with you about not feeling independent, I have 24hr care pretty much. I'm almost 36, I was born with severe spinal conditions which I remember having pain as young as around 8 or 9, at 20 it stepped up in pain level,it was hard to see my friends going out doing 'normal' things. But at 32 I had my spinal cord injury.....things totally changed, I went into a deep depression, and it was hard to get out of, but I turned the corner and started to do more things( with help) I learnt to feed myself, every tiny little thing that was positive, even if it was being able to balance upright for 3 seconds I congratulated myself. I built myself up like this, yes I have awful days, when my spasms are horrendous or my catheter gets blocked(extremely painful and dangerous) but, I try to find something even if it's something that seems ridiculous, I give myself praise. We are all so different, so I can only say how I feel, but I've read some of your posts, and for someone so young, moving out of home for instance, you did do it.......and you had your pet turtle, those all are things to be proud and positive about! Things may be different now, but you did it! You actually without realising motivate a lot of people on here.....😊

Mar 06, 2016 5:35 PM

Hugs. I know about depression, it was a normal state for me since about age 10. It has nothing to do with sadness and crying, and more to do with grief and despair.
Just know you aren't alone on this planet. You deserve every good thing simply because you exist.

Keep fighting the system. Write out your every symptom, and send it to insurance. Make sure the doctors who diagnosed and treated you for anything also send their records in, or try to get them yourself and send them to the insurance. We have to fight them as well as our bodies. It isn't fair or right, it's just how it is.
Your pain has made you strong and stubborn and compassionate.
We're here, and we care about you. I want to hold you and comfort you and ease your pain.

Mar 06, 2016 10:00 PM

Hi Jenna, I
'm thinking of you and praying,
sending gentle hope. I do not have crps but do have 7 autoimmune disorders and other dx's. Talk about anything you want to, there will be many here who can and will offer support and as much understanding as they can.

Mar 06, 2016 10:55 PM

JennaR, I read your posts & you are a light in the dark, you are so brave and you inspire. Depression sucked the life from me, I thought, for so much of my life before I even recognized it for what is was. After I took hold of my response to the way I felt, suddenly the crushing weight of it began to lift & I could change bits of myself to make a space for a corner of light. Not all days are good ones, I still feel the power of the dark, but I do have that tiny bit of ember that refuses to go out. That is what I wish for you because you do inspire me. Tonight I finally returned home from A long weekend of misery. Being home is such relief, my chair, my bed, my exercise equipment and all the things that help me in some small way control the ravaging animal of pain. I hear you.

Mar 07, 2016 1:25 AM

Jenna, I agree with the others ...you are strong and courageous even if you can not see it right now due to the depression that over shadows the strength others see in you. At the young age of 18 you are more mature than most. It seems that you have spent most of your life suffering with pain. But through your pain you have touched and continue to touch so many people's lives. I know it is difficult to see that there is a light at the end of your tunnel... But there is. We are here for you anytime. This is a safe place to share your heart. The world is a better place because you are in it. We are better people because we have an opportunity to get to know your heart. We understand because we are traveling similar journeys. Is it possible for you to do schooling on-line? Perhaps you or your mom can check into it. You do not have to give up your dreams. My daughter just got her drivers license last month and she is in her 20's. My son just got his learners permit on Friday and he is 16. Believe me... It's scary to me as their mom! Good thing you live in a different state. You do not want to run into either one on the street! 🙏🏽 👀 😢.🚦 🚘. 🚔

Mar 07, 2016 10:59 AM

Jenna, you have not failed your life or anything else. These things happened because of your illness. You did move out, you got a pet, you took care of yourself.. All at such a young age!! I moved out in my 20's and had to move home at the age of 37 because I could no longer live by myself. I couldn't work so I couldn't pay rent. I was lucky to still have my Mom and Dad in my life who welcomed me home with open arms. I rarely, if ever, ask them for help with anything. Just knowing someone else is in the house is enough for me. You absolutely are a light piercing through the dark. Your humor, your willingness to reach out to the young folks who have found this app and need to find others their age to speak to. You are an inspiration to ALL of us. Your strength, your resilience, your wish to live your life!!! I'm sending you gentle {{{Hugs}}} and prayers that you find that light and hang on to it. My hand is here for you to hold and you have my number any time you need me. You've been through much more than many have in twice your years. You're in my thoughts.💕🙏🏻🌻😊

Mar 07, 2016 2:25 PM

Thank you everyone for being so supportive and letting me express how I'm feeling right now...I've been reading your comments and then when I go to reply, my brain just...shuts down(?). If that makes sense...I'm honestly having trouble to find words right now..I don't know if it's the depression or the "brain fog" from the pain...I hate using that term because it's mainly a fibro term, but it's the only way I can describe it...I feel..emotionless...I feel like I'm shutting down again...I'm trying so hard to not feeling this way...but I don't know..I know I won't hurt myself...even though the thoughts come sometimes...I don't think I could handle being in a psychiatric ward again..I spent probably a total of nearly 2 years in them when I was younger...and I'm scared of going back...I've been hiding this depressed feeling do so long since this flare started, I told everyone, my mom, dad, the doctors, everyone, that I don't need anti depressants (I hate being on them..tbh) I remember one time with my dad and his girlfriend we were talking about my depression and I said something liek "I'm upset about this, but not depressed" and my dad and Laura said that they have seen me really depressed, and I don't seem to be right now...and I guess that shows how well I've gotten at hiding it...I even was able to hide it from myself for awhile. I told everyone I'm okay and I can't let them down by saying I'm depressed...I feel like now that I'm realizing it...that Im dissociating my self again.. And I know I need help for it...but...I just can't bring my self to tell my mom...the only therapist that I honestly trusted and was able to talk to doesn't take my insurance now...and I just don't think I can trust any one other than her...
Shit...I'm rambling at this point.. I'm sorry for another long post my brain just seems to get lost when I'm typing..

Mar 07, 2016 4:01 PM

I know what you mean about the depression, hiding it, shutting down and dissociating, also not talking about it. I do the same and feel like I'm letting my family down. Also have no one to talk with. But we are here and together in this virtual way. We can talk to each other.
I have one friend, he always reminds me "Never give up." So I'll tell you, too: Never give up.

Mar 07, 2016 4:09 PM

Seems like friends disappeared from my lack of communication, being unable to think and my not being current/ interesting.

Mar 07, 2016 4:09 PM

What do you do with your time?

Mar 07, 2016 5:38 PM

Jenna
You are my inspiration, I have crps going on 3yrs now, I feel like it's robbed my life, I have 2 young kids, and at times it's hard not to be there for them, when am in flares like today, I went to work and after just 3yrs my pain was so bad I couldn't move, I felt depressed indifferent and alone especially when people don't understand what it means to have this condition.
Tomorrow I am seeing a specialist if I can have the ketamine infusion, insurance don't want to pay for it so I have to find a way of getting this done.
But after reading your post today I want you to know you are doing a lot than alot of people with degrees out there, you are giving hope and encouragement and that is a greatest thing.
Thank you for making me feel better, and even when am not on the post daily trying to manage a work, life, pain balance know that you posts go a very long to someone like me.

Mar 07, 2016 6:05 PM

Thank you, so much. I'm glad to know that my words aren't just disappearing into cyberspace. I've been forcing myself to be out of bed today. You really cheered me up.
My insurance only covers the minimum. Their therapy is 30min once a month and it's like starting from scratch every visit, so I don't go.
I hope your visit with the specialist goes well and your treatment is covered immediately. What does the ketamine do?

Mar 07, 2016 7:20 PM

Please know we are hear to listen without judgment... Easier said than done but keep your head up... Together we can all get through this pain battle!

Mar 07, 2016 7:21 PM

Thanks am hopeful that things will work out

Mar 07, 2016 8:10 PM

Jenna, you actually saying that you feel depressed is massive in itself,You're NOT letting anyone down! You said you had a therapist who was great and, I understand that..once you've opened up to someone you felt you could trust, it's hard to talk to others. The Fact you're Talking to us... And you may not realise it but even online, you are acknowledging how you feel....that is so worthwhile!!! 😊

Mar 08, 2016 6:25 PM

Jenna, I understand how depression can be overwhelming, to the point of shutting down. But the fact you realize & voiced it is good.. As for using the term "brain fog," it's mostly assimilated with fibro, but it's ok to use it elsewhere too. My psych doc said today that some of my brain fog could be coming from not sleeping well, and it can come from stress. Both which I'm having problems with. I can't say I know how you feel because I wasn't such like I am now until the past six years. But I do understand the depression and feeling like a failure. I've overcome those mostly but I still have to fight it off or and then. I'm sending you hugs, love, and prayers! You are a very inspiring, strong, young lady, and could never be a failure! 🙂💕🙏🌼

Mar 08, 2016 7:18 PM

Jenna ?? I think that is your name. It is totally understandable that you are suffering from depression. There would be something wrong with you if you weren't. Anyone with rsd has to suffer from depression at some if not all the time. I know it is hard to do, but what I do is 1 think of the positive things in your life -- things that you have done, things that you are still able to do. 2 if think of others that have it worse than I do, there is always someone worse of. Try distracting yourself. Doing something that you are able to do with people that love you AND make you happy. Those two things don't always go together. fyi I love my husband very very much but when I am in extreme pain and feeling depressed, he is the last one I go to. Sometimes for me it's talking to my mom or my best bud. Just talking. I call it venting. Not really wanting advice or sympathy just a sounding board

Mar 13, 2016 10:03 AM

I don't know what your veiws are on religion or God but he helped me. He actually saved my life. I have been very depressed on and off for the last 7 years and if it wasn't for believing in God i would have killed myself by now. I have attempted several times even though it was just to make the pain go away. I don't have the same illness you have but i do under what pain is like and being so young. I was Diagnosed with fibromyaglia when i was 19. It's been a constant battle for me. Dealing with pain all day eveyday. Ive been on countless medications and none of them help. I changed my diet completely to a plant based diet. I no longer eat any meat try to limit my sugar content try to get most things that have no gmos and are organic. I eat a lot of fruit and vegetables. Maybe that is something you could try and look into. Also alkalizing your body will help with the pain. Lemon water. And baking sode with lemon in water too. Don't give us hope!!! I will be praying for you. Remember God hears your every cry. He heals the broken hearted and binds up all their wounds.

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