FLF #10 - the highs and lows of a chronic pain sufferer

It's been awhile since I've had an update, so here it is. A while back I went to the St Vincent's Hospital Barbara Walker Pain Management Clinic for assessment and as you know they diagnosed me with central sensitisation syndrome. They explained to me that this was like having fibromyalgia, Irritable Bowel syndrome and Chronic Fatigue Syndrome combined. Ultimately they stated that it was a lack of noradrenaline in my brain. They showed me MRIs and talked a lot, until I was eternally grateful that my partner Steve was there to take notes as I was losing track due to being so tired. As a result of this they advised me that I needed to go and learn about the condition via a four day course that runs one day a week for four weeks. On top of this they asked me to go off all opiate medications, and they would do a treatment plan for me which would involve sessions with the doctors over the period of a year, physiotherapy and psychological support. All free of charge. A new medication for noradrenaline combined with an antidepressant was going to be the solution. I went off the opiates as requested and as predicted my pain got worse. Not a great deal worse as I don't think a lot of the drugs I was on where affective anyway, but regardless it did get worse. I also continued to gain a great deal of weight, I'm obese by about 50 kg. The pain prevents me from exercising a great deal, I do try but then I'm in more pain and I stop, get depressed and then I eat. All this while trying to maintain my full-time job in the city. I was also requested to stop taking the Chinese herbs that I was getting from the Chinese specialist doctor and I agreed to do this as they claimed that it would be difficult for them to determine what was in the brews that were affecting my progress, if affected at all. They changed my antidepressants to a different class. I also reduce the amount of lyrica that I was on and I have done all of this completely, so that now I just take a few tablets with 150mg of lyrica at night.

So then it was time to wait for the appointment to start my treatment at Barbara Walker. It's taken a while and just as I was about to start the treatment I started having complications with my oesophagus again. I went back to the doctor who performed the surgery on my oesophagus and stomach last year and I had to have another barium swallow. The results of the test was that I still have not completely recovered from the issue.  I still have difficulty keeping things going down to my stomach because my oesophagus spasms up and down, not just down like it's meant to and the opening to my stomach does not open and close properly. I went for a barium swallow and I confirmed these were still the major issues. I went back to the doctor that originally did my surgery and he told me that this was out of his league and send me onto another specialist. I've since seen that specialist and had a gastroscopy and now I'm waiting to find out when my next surgery will be but I've been told that I'll definitely need surgery. So far I've been told that there is one kind of surgery that I should have but they will try and think of another process because that surgery will result in a poor quality of life. That would involve cutting away half of my oesophagus. I've also have developed a pain under my left arm pit which is excruciating at time and I still don't know what that is.  It can wait. I'm guessing its the lymph nodes.

In the meantime I have been in a lot of pain which has resulted in a great deal of depression for me. I haven't started the program but I'm off the drugs so it's like I'm left in limbo. I complain to them at Barbara Walker that something needs to be done and they come up with all this airy fairy shit that dries me crazy. Yesterday I felt like I was on the verge of a breakdown talking to the doctor at Barabra Walker; it was like hitting my head into a cement wall over and over and over again. I understand some of what they're saying but I think it's ridiculous for them to expect me not to be on pain medication and just wait and think of pleasant thoughts and not concentrate on the pain. They haven't even given me the strategies to achieve this. Then they tell me I need to see a psychologist to help me through this difficult stage. When they expect me to be able to do this is beyond me when I work full time and live in a country town an hour out of the city. How am I meant to make these doctors appointments and maintain my job at the same time under the kind of exhaustion and pain that I'm experiencing? I'm usually too stuffed for anything when I get home and either just rest or go straight to bed. I feel like hitting somebody - mainly those doctors. I haven't been as close to that kind of uncontrollable crying and sense of my life being so out of control, as I was yesterday, in a long time. In years. It was terrifying.

So now it looks like I have to wait until next week to see the doctor to find out what kind of surgery I have, but it looks like the surgery will be within days of that. The reason that I wait is because they took biopsies that they're waiting for the results for.

My partner has a back condition and he often gives me some of his pain medication which I don't feel good about taking, but there are times when I'm very grateful for it. I'm concerned and lost and often think that this all isn't worth it. Maybe this is the end of the road? Maybe I won't get the life that I have longed and worked so hard for back?  Maybe I will? I don't know. I doubt it and I'm exhausted.