@rwinney

Rachel,

I read some of your chains and how last year Mayo pushed you back to Sept. I figure you have gone but not sure when to the PRC. Can you review your pain issues and symptoms. How long and did they get progressively worse. Tell me about the PRC experience, what do they do with you for 3 weeks in a row. I watched the video with the Doctor explaining CSS. I had never heard of that diagnosis but sounds like there are no pills or procedures to fix it. It sounded like you were still pursuing the medical/procedurally side still too.

Only people who have lived with chronic/persistent pain can understand what the pain does to you over time. The main problem I have is I never get any relief. Its really ranges from say a 7.5 (rarely) to a 9. I call a 10 you need an ER and in medical trouble. I have been in the hospital 3 times. One last summer for two nights and I only got out of it was another injection that didn't work. That too is our biggest hospital in St Louis and is tied in with Washington University St Louis. Its a top 20 hospital in many categories but they didn't put much effort in. I went end of Jan this year due to so much pain to a different hospital but same network with Wash U. They did a bunch more tests and only could find minor ulcers. The follow up I waited 8 weeks for was a joke, the top GI doctor in the whole chain blew me off. His fellow came in and took notes then left and then they both came in and he just said "I see you have taken a lot of meds but didn't stay on anything long enough. And go do biofeedback and read Brain/Gut book and left. Didn't even examine me. These visits just crush you mentally. I went to my GI doctors hospital in early June due to I couldn't take the pain anymore, that is when we decided with the surgeon to take my gallbladder out. I wasn't eating but on avg 1200 calories a day from Feb-May and lost a bunch more weight. It got scary how bad it was with not eating, I was in too much pain and had no appetite. I have had a big appetite my whole life and food actually use to help my minor stomach issues I had for so many years. I was only in the hospital then overnight as they didn't have anymore ideas.

Did you find relief going to the PRC, you put a lot of hope into it from my readings. Is your pain constant except for sleeping like mine? Do do you have drugs, PT, food, supplements etc that can bring the pain down a few notches for a break? I don't mind reading something at all very long, as we all have-I have put gosh knows how many hours into research for the last 3 years.

I really don't know how I am going to live with this. I haven't been able to distract myself from the pain for over 6 months. Its just hurts too much All of the time. I am stumped why a celiac plexus block didn't work for my abdominal pain, its worse today than it was leaving the hospital for the third time Feb 1st. I don't think I can handle at all going down another notch from here, it just is killing me and the pain runs such a long way since its lower pelvis to xiphoid. I think is a nerve disorder at this point with so much testing done. My mother died due to chronic progressive MS for 20 years. As i mentioned in other posts, in the last 2 years I have only had 3 relief days-one cannot live this way. Yes my mental health has suffered so much which doesn't help. The help came from one injection in the ilioinguinal and hypogastric nerves (48 hrs of great relief), Tramadol dropped it to a 7 one afternoon and then the buprenorphine dropped it 36 hours to a 5 though by late day two was vomiting. Mornings are so hard for me and I keep adding issue or symptoms such as occasionally a delay on urinating even though I need to go sometimes you have to push to start. The foot rubbing back and forth on the floor and how when I sleep it must turn off as it doesn't wake me in the middle of the night but once you do get up after 6-7 hrs sleep your toast. This morning I went to the bathroom at 330am and made it back to sleep but then 4 hrs later I have to go again and this time right after going to pee when getting back in bed the whole body pain turned on like usual to this time a level 9. So walking the short 20ft to bathroom it hadnt turned on but 1 minute later after going Bam. Its so frustrating, if I could occasionally get some relief there would be some hope, I have lived with headaches and the mild gut ache for 23 & 20 yrs each and adapted. This is something totally different and I don't know how I am going to survive this. I will be honest with you and anyone who reads this that if not for being married and having two kids I don't think I would be here today, I would have lost my will a long time ago. I am bringing of course stress into the home but also am dealing with teenager issues, my wife handles most of it but when your world gets so small like mine has (I was very outgoing and the leader of fun) you start nitpicking your family and looking for something to say that they are doing wrong. To a degree I have always been somewhat of a perfectionist but not this bad.

I'm sure I have more to add but for now leave it at that. I started with a new PT person, gave it a try some last year and someone to talk to. My daughter who is almost 16 has her own anxiety going and is seeing a therapist. I am suppose to go with them tonight but not sure I can do it and be honest. I am interested in you filling in the blanks so I can understand your pain and where it is now.

Thank you for caring,
Rob from St Louis

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