Living with pain

Hi Rachael @rwinney;
6 days and counting until I start the PRC program in Rochester next week (August 10). I've started packing and looking forward to staying in a nice apartment near Kutzky Park within walking distance of Mayo Clinic. I finish Sept 1 and will be happy to share my experience, with the exception of a few program secrets that other graduates have kept to themselves. CANT Wait!

later,

Roger @skier

Hi Roger! Can you let me know how you do too? Irene

In reply @bear338
Bear my name is Rob, if you look around on the pain or digestive health situation section you will see why my mindset is like yours. I am so similar to you but have had longer level 8 and higher pain. I am not going to take space on this link going over the history but it’s awful. I will just say on the similarities is that I have had migraines that would come 2-3 times per week level 6-9 and then a usual level 2-3 band always around head or in back of head and neck since 1997 and stomach pain since 2001. That pain is like an ache from not eating for a day. Ice packs and strong aspirin with caffeine and muscle relaxant worked on my head to bring down big headaches and nortriptyline 100mg at night masked enough of the bad stomach pain or it would calm back down. Eating and filling stomach and sleeping on my stomach the pressure help the gut pain too.
That all lasted until spring 2018, up till then I had a job I worked hard at, traveled and had two kids. Lived life enough just with pain problems. I had so many tests done over those 20 or so years but nothing was really found. Just thoughts on what it might be. So those items I took or did was my Pump. Spring 2018 my gut started hurting more and seemed nortriptyline stopped working. It kept getting slowly worse till fall of that year averaged a 5-6. I had a ct and upper scop, labs and new pills tried in first year with this. I have been working on this solidly since January 2019. The pain added the pelvic area by also going now below the navel. I have had at least 7 different or types of Ct scans and been in hospital 3 times in last year for pain. I have had tests or appts every week for last two years. Those visits resolved nothing. The pain took over my life fully around July of last year when I could no longer distract myself. I have had probably over a hundred doctor visits and so many tests and all pills tried. I have had 8 different injections too. I won’t go on more on this but to say I have had no life worth living for little over a year now. I really need to quit my job which I work from home but is too stressful. My hold up is I know going on my wife’s employer insurance will block more medical things and cost around $5000 more per year. I have tried to not have to do it but I am suffering even more by working. Like you I can tolerate a high level of pain like an 8, I call a 9 so bad you are a ball in bed shaking your leg back and forth due to the pain. I have bad pain to the touch even from xiphoid to pelvis down the middle of my abdomen. Only twice in two years did the pain go down but couldn’t repeat it. One an injection that lasted about 40 hours and one taking a pill never tried buy only lasted about the same then vomited. I am in pain every minute of every day accept for when I tire out at night around midnight, I can sleep for 6-7 hours a night then I awake and it comes on in under a minute. I started losing weight a year ago because I guess the pain is so bad it took my appetite away. I lost weight every month but got worse after getting out of the hospital in Feb of this year. This year has been scary because I lost it fully and was really only taking in around 1000 calories per day. I was around 30 lbs too heavy but it was hidden well. I was down 44 pounds a month ago, then had my gallbladder out from a decent opinion from a surgeon. I knew though it wasn’t going to solve it but had to try something. I was so bad in late May I went to the ER again at the hospital the surgeon is based out of. Stayed one night because we decided on surgery but all the other doctors were stumped. I have basically run out of options in St Louis

I actually have had a few virtual appts with Mayo Rochester GI dept. The female fellow I mainly worked with was very caring and had a few more test ideas but they didn’t turn anything up. She actually just left Mayo as her fellowship was over. Not sure other than going up there to see them more they can do. I am not healthy enough now to travel. Plus I have two kids ages 15 and 18. I am 52 and been married for 26 years. The only reason I am probably alive today is my spouse is so caring and I don’t want to die on my kids.

Im not sure if I can try anything else. It’s exhausting to constantly be searching for answers. I am typing this right now at a level 8.5 and cant ever fall back asleep, last night was up to 1:30. I know exactly how you feel about living with pain. I waited for a long time on some doctor appts and they gave me no time or hope, terrible bedside manner. If you have never had constant pain one cannot understand. You might have said what I have said so many times in the last year. I can’t Live with this pain but don’t want to die. This isn’t living its existing. I even have pushed most all people away who care because I was tired of updating and answering texts of Any Better or What did doctor say. They mean well but I’m tired of talking about it. They all of course say How can they not figure this out. I can’t think of anything worse in life than constant pain. I don’t even have a real diagnosis which is hard mentally. I haven’t been the same person since 1/1/20, the mental anguish is so hard. It’s hard to not lose ones patience when the kids don’t do as I ask.

I won’t go on more than that but to say I think we are very similar. I didn’t catch if you are married or have kids. I am going to start again with a new psychologist and new PT. I don’t think I can talk it out to help or stretch it out etc. I just need some relief at times and can’t find it. For now I keep trying for my kids. They know now how really bad I am say since beginning of year that I might not make it and what they can do to help me. It’s hard though because they are teenagers.

I figure no pills work for you and it’s so Hard to be at this level of pain. I don’t know if you have a few people to lean on but it does try to keep you pushing along. If you get a new pump from someone do you think it could help again. I wish I had a story to tel you about pushing through but each day is such a challenge. It can take me 2 hours in morning or more to get out of bed. The depression is as hard as the pain. I’m not depressed like someone with a terrible mental illness but due to the pain taking over my life. I will add I had a similar troubling background of a mother who got sick from the worse MS you can get in the early 80’s and a step father who didn’t k or how to deal with it. It still haunts me.

This turned into a long read but I really understand about both kinds of pain we share. If a pump can provide hope you got to find one somewhere in an area maybe someone can drive you to. I can’t see me getting on a plane ever again with level of pain. I hope this helps you a bit to understand someone and of course many know how you feel. I have said many times Gosh give me stage 2 or worse cancer, something I know I have and a chance to fight it. I don’t have the answers to make you feel better but just know I am with you. I try to occasionally do some house chores or go outside some. I at times feel staying in the house feels even more trapped. For now we keep fighting because we are not given a choice. Reading stories on this forum tells you how many people have bad pain. Most of the time it helps reading these because stuff is said that compares and knowing your not fighting alone.

Gosh I wish we could find some relief for both of us. Right now battling bad thoughts is so tough. I try to not think that way because it doesn’t help, you gotta try to push those aside as best as you can. Bear I know your pain and feel for your. I’m right there with you brother.