Medical mystery but with plenty of clues

I really wish I had searched for a site like this a long time ago. I will try to be as accurate with past issues and current symptoms, in the hopes that someone here has had the same.

I broke my back at 17 and had a fusion done at 18 at the L5 level. Roughly 6 years after that I blew out some discs. As my Dr. was attempting to inject the dye for whatever test that requires, 1 of the 36 attempts to get in around the fusion bone mass gave me a staph infection in my spinal column. It makes it very difficult now to tell a medical professional what my pain is on a scale of 1 to 10, because until they finally got the infection and excess fluids drained I cannot imagine ever being in more pain than I was for nearly a month in the hospital.  Around a year after that I was in an auto accident where ultimately it was discovered that I had broke a couple of vertebrae in my neck, so that was fused too.

Fast forward to early April of this year. I started having extreme chest and abdominal pains. I was admitted to the hospital in late April after a bad bloody stool and in office tests confirmed blood in there and in the urine. During this stay I had x-rays and CAT scans, along with upper and lower scopes performed. All tests results were normal. Since then, I have had ultrasounds on most of my organs, a HIDA scan, continued urine testing and the capper for the internal tests, the one up the front of a guy - I don't recommend that one guys...

So, every one of these tests have returned normal. The clinic that did the up the front scope suggested I go see my back Dr. because they have seen pain radiate into the abdomen from back issues. So, I find my original Dr. has now retired but the practice has grown, and make an appointment to see one of the other Dr's. He has obviously read up on my history, and sends me to their x-ray lab where I have at least 15 more pics taken. After reviewing them, he orders a MRI of the back from the chest down. Once the results were returned, he said every disc from the mid back down is either diseased or "bad", and orders a nerve block at the L5 level. 

Yeah for me. I explained to the (different) Dr. that performed the block that I had a lot of bone mass build up at that level and told her about all the fun when they tried to inject dye. She gave one crack at injectiing it around the bone then decided to go at it through the tailbone - I don't recommend that either...

Anyway, around this same time my primary had refered me to a pain management clinic and the appointment there was a week after the nerve block was attempted. I say attempted because now not only did my abdomen still hurt but now my lower back and lower hurt a lot too. I have to say that I was very impressed with the visit to the pain clinic though. After a few get to know me questions with the nurse, I met with a PA that is going to make a fantastic Dr. After interacting with me about all that has gone on and then performing a bit of a physical, she stated she thought we were dealing with at least two separate issues. One of course being the back and the other being the intercostal nerves. She suggested we do an intercostal nerve block, and the Dr that I guess the appointment was actually made with (lol) agreed. So, she put me on a table, I laid on my side, she poked around until I jerked in pain, then she injected at those points.

A day or 2 later I woke up and felt pretty darned good. My spirits were improving and I was doing well. At least for a few weeks. about 2 1/2 weeks afterwards, I started regressing, slowly but eventually to the level where I was prior to the injections. I had another appointment already scheduled with them, so I just dealt with it until the appointment. The PA that I thought walked on water was at another office that day so I got to meet with the actual Dr. this time. Again, it was a pleasant appointment and he listened to me and answered all my questions. Problem is, he admitted he didn't know what was wrong, wanted to refer me to another Dr., and that he would try another set of intercostal blocks, but we could not keep doing this every 4 weeks.

Well, he went right along the ribcage and in the spots where I said I was hurting, instead of finding the hotspots like the PA did, and those injections never helped. When I called back to ask for the referal he had mentioned, he refered me to a GI specialist!  I questioned his nurse and made sure they had all the records of all the cameras that were put in me and returned as normal, and she checked again with him but he wouldnt waiver.

So, anyway, I contacted the Dr that did the upper and lower GI's in April and 1st order was to get blood drawn for Irritable Bowel Syndrome.  After researching this I was a bit livid because I do not have one symptom or sign of IBS. The initial visit with pain manage ment and the physical therapist they sent me to all kinda made me feel this was a nerve issue, and originated from somewhere in my back. But, I have to go see this GI Dr. next week, cause that is what was refered and I don't want to mess with the insurance company. 

The major symptoms are a knotting, wrenching type pain in my lower right abdomen and also directly under my lower ribcage on the right side. The pain level ranges from a constant, dull , let you know it is there type pain to excruciating, eye-watering type of pain. I also have pain radiating up the side of my ribcage to my armpit. The chest pain is pretty much non-existent now. I have been on a plethora of meds along the way, but right now am only on Lyrica and Wellbutrin. I cut out the pain meds after the first intercostal block, though I often wish I had them now.

Well, thank you to those that read this, and I truly hope that I can find someone that has had similar experience here that could help me find a cause for all of this. The worst part is the way it has absolutely changed my life and lifestyle. That is the hardest part.  Even with all the back issues I am a pretty active guy. I liked long walks, golfing, and doing vehicle maintenance. I have to drive an hour to pick up my kids every other week, and that has been miserable. I also have been seeing a gal that lives an hour the other way, but I don't feel like going out or going to see her anymore. I pretty much have an I don't care attitude. That is not like me either. And it is pretty much tearing apart the relationship. I can type these words and understand them, but, I don't care - help me out, please!

     Dear Infinite,

      the feelings that I know I get that no one believes you since there isnt a bone sticking out somewhere,

    I hear you there! I get odd looks all the time. Until recently, literally. I was treated same way for a very very long time.     Like we "want" to be there. 

 " No No really! I WANT to be in a small confined spaces with multiple strangers and machienes that cost more than my home. So much more exciting than...."

".... Of course were still friends after the bill arrives...."

*huggs*

dani

Hi Infinte,

I too would like to welcome you to Healing Well. I am so glad you found us, however, we always hate to see one more person come along with chronic pain. Its amazing how many us of there are out there. By coming here you have people to talk to, people that can relate to what you are saying. Communication and understanding are one of the many things lacking in treating CP. Most people give you the cross eyed look when you mention CP. Many of us can talk to family and friends about our pain and many like me do not talk to them about it. I chose to stop a long time ago, I know I was sick of hearing it and I also know they were too, lol.  

The losses we have because of CP is unbelievable in the eyes of alot of people. Many of us lose our jobs because we cannot do the work, so then we feel the financial hardship, the changes we have to make in our lives because of financial constraints, then we lose our self worth because we do not think we are holding up our end of the stick, we lose friends (true friends stick by you-aquaintances leave you), depression grabs ahold of you, the what-ifs jump in, the unknowns makes you feel nuts at times, we grieve for our losses, some of us need professional help to learn to deal with everything, trying to figure out to make a new life and learn to adjust. The list goes on and on.

Finding good intelligent drs is a big problem with CP. Some of our PM drs have limited knowledge treating CP patients, most of those guys were anesthesiologist to start with. Some only want to do injections and procedures, others will do that and rx pain medication.

You have been thru so much, I am at a loss as to what they could possibly test you for now! Like Frances I have had to R/F done at L5-S1 and the facet joint done at that level, I had the cervical area done too, have had more trigger point injections than you can imagine. All of this is temporary and not a fix. It will be interesting to see what the GI dr has to say. He may be surprised to see you in his office. My thoughts are to get off the Wellbutrin and try one of the newer antidepressants  and after seeing the GI go back to the PM dr and talk about putting you on a long acting pain medication with a short acting for BT pain.

I hope you will hang out here with us, you know the old saying misery loves company,lol. I do not think you will find a better group of people to offer support, tips & info, or just sharing things with than right here. Take care and keep us posted.