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.
Fibromyalgia/Lupus Fightback! - Tania's Journey
Wednesday, 29 April 2015
FLF #10 - the highs and lows of a chronic pain sufferer
Thursday, 19 February 2015
FLF #9 - A New Diagnoses and a New Chance!
Today I finally had the Dr House Treatment!
After a whole day with different specialists and then those specialists working together to look at what's wrong with me they have determined that I have Central Sensitization Syndrome. It's like fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome combined. But alternately it means the neurons in my brain fire too much, changing the chemical composition, causing all of the above symptoms; basically keeping me in chronic pain. I need to change my medication completely and increase the noradrenaline in my brain. I also have to attend a prep education course one half day a week for four weeks, see a physiotherapist and a psychologist to retrain my brain.
The main doctor stated that new medical research is showing that it is most likely that fibromyalgia diagnoses are really a result of this condition and he showed me MRI images showing test results from the research (see below). It is showing that people with the above illnesses, and other similar illnesses, all show these brain flares as well as light and or sound sensitivities, memory and concentration issues etc. He also said that this new treatment should give me my life back as it is proving successful.
So there is still hope and I reckon I'll reach my goal of riding Granny again by the end of the year!
YAY!
Tuesday, 20 January 2015
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #8 - Free exercise video for bad knees and mor...
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #8 - Free exercise video for bad knees and mor...: We are always told by medical professionals that we need to exercise, and they are right. The problems begin when you have an illness or inj...
FLF #8 - Free exercise video for bad knees and more
We are always told by medical professionals that we need to exercise, and they are right. The problems begin when you have an illness or injury that prevents you from doing it. It's difficult to find the drive to do something when you know it is going to cause pain - not the "feel the burn" kind of pain, but the shooting, stabbing, debilitating kind of pain. But we have to work to overcome this.
Then, if you are like me, you face another issue of being embarrassed to exercise in public. I feel humiliated by my size and I don't want to be seen in a bathing suit when I go swimming or to be the fat woman who cant keep up, or god forbid, I have to stop exercising due to my pain while everyone else is still going. Whether it's true or not, in my mind these people are looking at me and thinking negatively about me. This is a life long issue I'm still trying to overcome, though I'm not very successfully right now.
So then we have to look at ways around this. I have an recumbent exercise bike at home that I can use even though it bores me witless. I have a lot of room outside at home so I can go about my business in private when it's daylight savings, if I have any energy left after work. I have a treadmill but it's not home at the moment. I can play games with my partner to get some exercise and have fun, i.e. we played cricket out the front the other day and we go to the pool when it's quiet (Steve can't go swimming at the moment due to an eye injury). Or I can do exercise inside the house following exercise videos.
The last one suits me the best right now because there are a lot of free options online via Youtube to choose from. After much testing and pain I have found the following routine that is only 10 minutes long and is suitable for people with bad knees. I try to do it three times a day. This works because it's low impact, takes up hardly any room so I can do it in my office (with the door shut), it requires no equipment and best of all I can at least get some exercise in via intervals. I'm embarrassed to admit that even 10 minutes is painful for me but if it gets to much I march in place. So far it's the best option I've found.
I think this would be a good start for a lot of people. Even if you work up to completing the 10 minutes over time, at least we can do something.
Check out the video and if you know of more please let me know. This video is from a woman named Jessica Smith & her little dog Peanut, and she has a good range online. I also have a list of other recommendations posted bythe myfitnesspal blog that I will share below. But check out this first one and let me know what you think.
http://youtu.be/f0yVP_eixEI
My Fitness Pal Recommendations go to the following article which has all the links: http://greatist.com/move/best-free-workout-videos-youtube
Then, if you are like me, you face another issue of being embarrassed to exercise in public. I feel humiliated by my size and I don't want to be seen in a bathing suit when I go swimming or to be the fat woman who cant keep up, or god forbid, I have to stop exercising due to my pain while everyone else is still going. Whether it's true or not, in my mind these people are looking at me and thinking negatively about me. This is a life long issue I'm still trying to overcome, though I'm not very successfully right now.
So then we have to look at ways around this. I have an recumbent exercise bike at home that I can use even though it bores me witless. I have a lot of room outside at home so I can go about my business in private when it's daylight savings, if I have any energy left after work. I have a treadmill but it's not home at the moment. I can play games with my partner to get some exercise and have fun, i.e. we played cricket out the front the other day and we go to the pool when it's quiet (Steve can't go swimming at the moment due to an eye injury). Or I can do exercise inside the house following exercise videos.
The last one suits me the best right now because there are a lot of free options online via Youtube to choose from. After much testing and pain I have found the following routine that is only 10 minutes long and is suitable for people with bad knees. I try to do it three times a day. This works because it's low impact, takes up hardly any room so I can do it in my office (with the door shut), it requires no equipment and best of all I can at least get some exercise in via intervals. I'm embarrassed to admit that even 10 minutes is painful for me but if it gets to much I march in place. So far it's the best option I've found.
I think this would be a good start for a lot of people. Even if you work up to completing the 10 minutes over time, at least we can do something.
Check out the video and if you know of more please let me know. This video is from a woman named Jessica Smith & her little dog Peanut, and she has a good range online. I also have a list of other recommendations posted bythe myfitnesspal blog that I will share below. But check out this first one and let me know what you think.
http://youtu.be/f0yVP_eixEI
My Fitness Pal Recommendations go to the following article which has all the links: http://greatist.com/move/best-free-workout-videos-youtube
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the face of fibromyalgia,
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Saturday, 17 January 2015
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #7 - What a flare up, bad day and pain looks l...
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #7 - What a flare up, bad day and pain looks l...: I'm putting this video up not to gain sympathy but to demonstrate what people with lupus and fibromyalgia experience during a fla...
Friday, 16 January 2015
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #7 - What a flare up, bad day and pain looks l...
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #7 - What a flare up, bad day and pain looks l...: I'm putting this video up not to gain sympathy but to demonstrate what people with lupus and fibromyalgia experience during a fla...
FLF #7 - What a flare up, bad day and pain looks like
I'm putting this video up not to gain sympathy but to demonstrate what people with lupus and fibromyalgia experience during a flare up. Please no disrespectful comments. I know I'm fat and I know this may seem like a whinge, but it truly isn't. People will only understand if they can see it with their own eyes. It's a constant battle. Some days you win, some days you lose. I often hate myself and struggle but I still hold down a full time job running a national centre, on good days I exercise for a minimum 30 minutes often for hours, and I take care of a household and hobby farm.
I'm trying and I still think I can beat this. My challenge is for the end of the year to post a different video. One in which I'm pain free, smiling and a lot thinner. One in which I'm happy.
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