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.
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
Labels:
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bad knees,
body aches,
exercise,
exercise videos,
fatigue,
Fibromyalgia,
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flare ups,
i hate myself,
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preparation,
the face of fibromyalgia,
the face of lupus,
workouts
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.
Friday, 9 January 2015
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #6 - Chinese Medicine Ingredients
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #6 - Chinese Medicine Ingredients: For those who have asked me what kind of herbs are used in the herbal tea, I think I have a solution of sorts. I travel sometimes for work a...
FLF #6 - Chinese Medicine Ingredients
For those who have asked me what kind of herbs are used in the herbal tea, I think I have a solution of sorts. I travel sometimes for work and can't take the jungle juice with me in the plane so the Chinese doc has given me some pills to take. He advised that they have some similar ingredients to what I prepare for the tea but at a weaker concentration and he suggested whenever I haven't had the time to prepare the tea or when I am traveling to take 15 of these pills. The box these pills come in say they are 'for the temporary relief of the pain of arthritis and rheumatism'. They are like little ballbearings in size and they contain the following herbs:
Angelica pubescens root
Spatholobus suberectus stem
Gentiana macrophylla root
Ledebouriella divaricata root ( spell check made that diva ricotta!)
Asarum heterotropoides whole plant
Eucommia ulmoides outer bark
Paeonia lactuflora root
Angelica dahurica root
Rehmannia glutinosa root
Angelica polymorpha root
Cyathula officinalis root
Codonopsis pilosula root
Poria cocos fruiting body
Glycyrrhiza uralensis root
Cinnamomum cassia stem
I wish I could take them all the time just so I don't have to taste the jungle juice but I must admit I'm getting used to it. I used to gag, but now it's no big deal. The pills have no taste or side effects at all.
I hope this is of use to those that asked or are generally interested.
Tuesday, 6 January 2015
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #2: implementing the plan
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #2: implementing the plan: What a day! I could talk about the siege but I'll stick to my fightback. I had to work from home as my horse injured itself. This was ...
Fibromyalgia/Lupus Fightback! - Tania's Journey : And so it begins...
Fibromyalgia/Lupus Fightback! - Tania's Journey : And so it begins...: I'm about to enter a very scary place. A place where I have to turn my life around and find some normalcy in a situation where I'm i...
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #5 - Chinese Herbal medicine & how you prepare...
Fibromyalgia/Lupus Fightback! - Tania's Journey : FLF #5 - Chinese Herbal medicine & how you prepare...: I've been slowly improving and losing a bit of weight. My energy leaves have improved so much that I'm able to do exercise, it just ...
FLF #5 - Chinese Herbal medicine & how you prepare it
I've been slowly improving and losing a bit of weight. My energy leaves have improved so much that I'm able to do exercise, it just takes the next day to recover. All in all I'm very happy with my efforts so far. I'm off the MS Contin and have no steroids. I've maintained the lyrica at 300mg twice a day and mercyndol as I need it; about 3 times a day while I'm on holidays at home.
A number of people have asked me about the herbs I use and what they are called. It is such a large mixture of herbs that it's impossible for me to say what they are. Thé Chinese medicine doc I am seeing is a very well respected professional in the field with 30 years experience. His name is Steve Clavey and as you can see by his name he is not Asian, but I have seen a few Asian students, as well as others, being taught by him in the practise. He specialises in gynocology but he assures me that he is well aware of lupus and fibromyalgia and can achieve excellent results. So far it is really helping so I'm very pleased. I've not experienced results in years. But please note this is not cheap; I think the money is well worth my health improving though. The first consultation cost $75 and the herbs $60 but they lasted about 6 weeks. The consult gets a bit cheaper for return visits. He is at 126 Russell St Melbourne. I'm sure there are plenty around that are as good as him so look around. As he is so well known in the profession I can ask about individuals if people want feedback. It may or may not be useful.
So here is what the herbs I am currently using look like:
The type varies from visit to visit as a result of what pain I am focusing on. The first visit the doc asked what pain there was but when I said it was everywhere he made me choose the two greatest issues I had at the time. I chose fatigue and the pain in my right knee. He told me my body was "damp" and this also needed to be addressed. I was too unwell for acupuncture which is what I went there for in the first place. Now I'm on herbs.
So I take the herbs and put them in the teapot below. I cover them in boiling water and soak them for 10 minutes. Then I put them on the stove, bring them to boil and the simmer slowly for 40 minutes, making sure the lid of the teapot is letting some steam out.
I then drain the liquid through a sieve into a jug, cover the herbs with boiling water again and simmer for another 40 minutes. After seiving this lot of liquid I do the last step again. So it has been strained three times in total. This is what the herbs look like after straining.
When you are finished the process you have a large jug of 'herbal tea' or what I refer to as 'jungle juice' left to drink.
I portion it out into the quantities advised by the doc and drink it morning and night. I'm on 100ml in morning and 130ml at night.
I have some ready in the fridge in small containers for convenience. It tastes horrible so I always have a glass of water ready as a chaser.
According to my partner my energy levels have increased by 60%, my knee is still a problem but is improving, enough so now that I don't automatically limb first thing in the morning and if I pace myself correctly I don't limp all day. This has happened about 5 times now (I'm still learning) 😀
I hope this answers some of your questions. Feel free to ask more and help keep me motivated to get this sorted. I go back to work next week so that will be a huge pressure to incorporate into my lifestyle. Wish me luck!
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