Chronic Pain Support Group

Hi everyone,

I'm Steph single mom of a 12 year old who's living with chronic pain that will only get worse as I get older and there isnt much I can do to stop it.

Back in December of 2000 I was burned in a house fire that left me 70% burned with 2nd-4th degree burns. I spent 7 weeks in a coma and another 5 weeks busting my butt in rehab trying to get home to my son. I should have hospitalized for months but that wasn't gonna happen.

I lost my 7 week old in the housefire and Ian (my now 12 yr old) was a month shy of turning 2. He had sustained a few burns but nothing that has left any lasting effects. Before passing out I managed to get both children underneath me and sheild them with my own body and my backside taking the brunt of the burns.

In the beginning the pay in wasnt there but as the years have progressed with the surgeries to correct things as needed the scar tissue has crept into places it shouldnt be and has caused several pain issues. My hands as disabled from severe burns. My back is where the most pain is now. My core isnt strong and whats required to strengthen it just is more painful. Scar tissue can be removed but it just grows back and as mentioned its interwoven into my lower back and hip area so I wouldnt even risk it.

I usually just live my life and pay the consequences later as I dont have many other issues and am doing my best to refuse to let the pain be what runs my life. However, there are times like the last week or so when all I want to do is sleep when usually I cant sleep have chronic insomnia...

I need to figure this out because I wont to keep on keeping on and make the most of my life since Im still quite young.

I have lots of friends with their own pain issues and we talk and share so that helps as well as support each other because we understand what pain can do to a life. However, we all have different issues and sometimes dont understand what we each go thru...

Well I hope I introduced myself properly. I also look forward to seeing what might work for other people that I can use...

Steph

Welcome to the group, i hope you find some answers here and i know you will get th support you need so badly, my heart goes out to you i know you are in alot of pain. I take a long acting pill called Opana it is strong but you dont get a buzz or anything like that it just regulates the pain, and i take diaudid fr breakthrough so although i dont know your pain i am not a stranger to pain, Ihope your doctors are taking good care of you, we are very happy to have you here and do not hesitate to post anytime, this is a warm caring group and we are here for you. You can pm me anytime i would be glad to talk to you. well i hope you really enjoy this group and i will pray for your pain, Much lov Debi

Hello Steph

Welcome to our group. I can't imagine the pain you must have had to go through and I'm sure still do. I'm so sorry for the loss of your infant. Reading your post, you sound like such a strong young woman.

We have a wonderfull support group here, at times it is a little quiet but we are all here for you so please feel free to post at any time. Take Care!

Kardie

Thanks ladies

I do have great doctors who work with me on what I need to manage my everyday lifestyle... It took time to find the right ones tho!

I will be around..

Steph

I can't understand losing a child but I do know what you're going through trying to be ther for the one you have left and how it can be very difficult the more active they get and the less able you are to participate. It comes with a lot of guilt and frustration from within others. My son has had to deal with my pain issues since he was 5 and he's now 22. Being brought up Catholic, I live with a ton of guilt and there have been a lot of fights about my not caring anough about him to make the effort to be there for him, etc. throughout the years. Unlike you, I don't have a lot of friends anymore. Most have left me as the pain issues have gotten worse and the same can be said about my siblings and even my parents even though I've had this disease since I was 2 thru 16 and it came back when I was 27. I am now seeing a licensed therapist who does hypnosis to help people with chronic pain as well as other issues like insomnia, smoking, anxiety, etc. I don't know how well it works yet, but it's something I'm willing to try in order to attempt to tackle some of the problems I live with such as the pain, insomnia and aniety from my medications as well as my increased smoking due to my not being as active and increased anxiety. I can tell you that the simple process of being on this web site, helping others with my own experiences and learning what others are doing to help themselves has been a huge help. It's something I can do when I can't sleep at night and it truely feels good when I've been able to help someone else through a crisis. Stay with us here and share some of your experiences. Read what other people have posted and maybe you can answer questions they have and help them lead better lives. In the process, you may find that you forget your own problems and pain for a little while and maybe even help you to sleep that night. Welcome to MDjunction where you're with friends. Macv

Steph my name is Viv and it is nice to meet you. I don't know your pain from burns and from losing one of your childern but I do know chronic pain all too well. I admire that you are trying to keep pressing on I am much older than you unfortunately with no childern but I am a pusher myself. It is good that you have a good group of doctors. It took me awhile too but I am blessed with a good group now. I spent a lot of weeks in the burn unit at Vanderbilt. I didn't have a burn but had a spider bite(Brown Recluse) that caused pyodermagangrenosum and they had to cut 8 holes out of my arm all the way to the bone numerous times and I was placed in the burn unit because I had no immune system and they were cautious about visitors there and all had private rooms. I could not see who was in the room next to me but I would hear him softly weeping at night time. I figured he was in alot of pain one night I walked in the hall to get ice and his door was open he said hi I am Paul do you have burns. I told him no he said I hear you crying each day when those doctors come in. That was during bandage changes. I told him I heard him at night. He had been there I think 13 weeks already and had a wife and 5 childern who was not allowed up to see him because of them carrying germs. He said I want my life back. Many nites I stood in the hall and we talked finally a nurse brought a chair and sat there and he would eventually fall asleep. I was up there all alone too I only have extended family so I knew loneliness but I did not have the husband and childern like his wife and kids he longed for. He worked so hard like you and went home a week before me not to a rehab center. We kept in touch by mail for quite sometime but he was busy living his life. Last time we spoke he was facing another surgery but was preparing for one childs graduation. Like you even through the pain he pressed on. He had a pain clinic that dealt with his needs. As I do now who keep me regulate so I have some quality of life even in this chair. I learned so much from him. Welcome to MDJ your post touched me deeply. Many blessings to you my dear!

Burns are not an easy thing to live thru.... But It has molded my life to be what it is and I can deal with that. I was in a bad place before I was burned and going nowhere FAST... Life is what YOU make it and I am trying to make it the best possible suited to me.

I dont actually speak with any other burn patients. However a friend of mine just passed out at his job and and landed in the friolator so he has some of the same burns I do. I still cant look.

However I wanted to say thank you again for all the kind words. They are appreciated.

I will look into starting a journal...

Steph