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.

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

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.

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. 

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! 

FLF #4 - The Bed Monster

I love to sleep.  In the past, when the alarm went off I'd press snooze a heap of times cause I was always tired. Then Steve would try and wake me and I'd pretend I couldn't get out of bed. I'd thrash around like I was being held down against my will by some invisible force and tell him the "Bed Monster" had me! For ages this was a running joke at home. But now I have a new Bed Monster. I don't have to try and pretend I cant get out of bed because this Bed Monster is in my body and it makes everything so sore and stiff that I literally cant get out of bed sometime. On the good days when I can get out of bed its very slowly and painfully. I call myself Tin Man; it's like I've rusted up overnight and need a good oiling. It's the worst way to start the day but it's a pretty good indication of what body parts aren't going to cooperate that day. It's all a matter of degrees really.

I've stopped the MS - Contin and felt no difference so that was ok. I went off the Lyrica as well but discovered that it is actually helping me, I'd just been on it so long that I forgot how much pain I can be in, so I'm back on the Lyrica. I'm also taking the mercyndol and the Chinese herbs for the pain.

I've been doing strengthening exercises for my legs where if I'm lying down or sitting I raise my leg (alternatively) and hold it for the count of ten then raise it higher and hold it for ten, and if I've got it in me I raise it higher. It can hurt but I fight through the pain. And the pain is not the "I just exercised pain" its a stabbing or aching pain. Then I bring my leg back down in the same degrees that I raised it for the count of ten each time over. Some days I'm great at this and others I'm not but I'm persevering and I'm happy to report that I'm not limping as soon as I get up.

YAY!!!!  In Your Face Bed Monster!!!!!

I'm doing so well that I had a day where I didn't limp until about 4pm! This is a major achievement so I'm very happy. After the Bed Monster lets me go each morning I no longer have an automatic limp. It didn't happen overnight of course but I've finally seen some significant improvement. This might not sound like much to some people but to me this a huge leap forward. I can hear Bill Bragg singing in my head right now!

On Saturday Steve and I went to the local pool and got a 3 month membership which give up a free forth month. We had an hour of swimming and playing ball games and generally mucking around in the water. It was great fun and I was pleased to see that I could still do a non-stop lap. The buoyancy certainly made a difference to my ability to do activity and I just had to suck up my embarrassment about the way I look. I felt like the both of us had achieved something. Then we went to my brothers place for the rest of the day. I felt pretty good all day; just like I had the flu (this in my everyday state). But the next morning I was in terrible pain and I slept and slept and slept. I got up around 11am and went back to bed at about 3pm. I didn't wake up until the following morning at 8am.   Now I'm back to the usual flu like state.

There is a lesson in this and I think it is one activity a day. It's like being at work. That's all I can really achieve then I'm pushing myself through the usual shite. I'm hoping that this is the start of changing all that. Now I've typed this I think it is a pretty good start!

FLF #3: Fibromyalgia - the medical profession's F word

While the majority of Australians were watching the terrible Sydney siege unfold I was at my rheumatologists. I'd gone to work in the morning and then traveled to St Vincent's to see my doctor. Since my last visit in June I'd had major surgery, my fibromyalgia and lupus had gotten worse, I'd gained over 30kg and I commenced the pain management clinic at St Vincent's, as well as Chinese herbal medicine. I explained this all to her and questioned why I was still experiencing major pain while I was taking morphine. I didn't think it was possible. She examined me and asked a myriad of questions and then told me there were two types of fibromyalgia sufferers: The ones that responded to medication and the ones like me who do not. She then proceeded to tell me that I was an extreme case, that medication could not work on me so it was time to start weaning myself off of all the drugs. When I asked her what was I to do next, she told me that she could no longer help me, that I should stick with the pain management clinic, that it was my only hope and that she felt there was no point in me seeing her anymore. This coming from what I was told was one of the main specialists of  autoimmune diseases in the city.

I told her that I'd been researching the condition extensively and that I felt that the drugs I'd been on for so long where known to be ineffective if taken for more than three months so why wasn't I taken off them earlier? Her response was that at least now they know that I 'definitely' have fibromyalgia.

I was a bit lost when I left the clinic. It took me ages just to find a cab to get back to my car; the wind was blowing so hard my eyes were stinging for the dirt blown in them, but it was a blur in more ways than one and I finally got back to my car, albeit limping as usual. 

I drove from Melbourne to Kyneton to go to the dentist. When this doctor gave me an examination she asked me if I knew about the spots on my tongue. I asked if she meant the faint blotches? When she said yes I told her that I thought everybody had that kind of blotchiness on their tongue. It was hardly noticeable. She said not if you know what you're looking for and then asked me what kind of autoimmune disease I had. I told her lupus and fibromyalgia and she told me 'that's not a good thing for you, I'm sorry to say, you need two of your wisdom teeth taken out and with those illnesses is not going to be easy.' She then showed me pictures of people who have had their teeth taken out with these illnesses and they were swollen beyond belief. She explained it was very painful, that she just had a case of it three weeks prior and that the autoimmune disease starts attacking the gums from where the teeth were removed. She also told me it can get quite dangerous if the swelling is blocking the airway.

All I could think was - typical.

So on top of my normal everyday pain and exhaustion I now have to deal with the fact that I have no specialist doctor, I'll have no meds, I have no treatments other than Chinese medicine,  I'm not seeing the pain management clinic until 'sometime in 2015' because the clinic couldn't get the doctors to do the assessment all at once, and I can't even get my fucking teeth fixed.

It was a bad day. So was the next, but it'll be better soon.

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 bad for Teddy but good for me as it allowed me to work at my own pace and I could break things up with rest periods. I took my meds and drank the liquid from the boiled Chinese herbs (aka Jungle Juice) as well as my other meds include lyrica, ms-contin and mercyndol. I can confirm without a doubt that the jungle juice has definitely increased my energy levels. I also think that I'm releasing fluid better now. I still have fluid today on waking up. I've only been on the jungle juice for 6 weeks so I'm giving it time too work. The results I have achieved are really great for such a short period of time.

I did office work and got up and did chores throughout the day. I've had to shovel horse manure and got about a wheelbarrow full when the pain in my lower back became quite bad. I fought through it, finished that load, took the contents to the tree area and unloaded what is now new fertilizer. My right arm fared pretty well but I could feel the back pain traveling to the other parts of my body. North and South. I worked at the computer to relax it.  I did some mopping and cleaned the kitchen. I finished but the pain traveled up my back on the right side just below the shoulder blade and down my right side leg so I'm limping again.

After working at the computer more I took the animals with me to get another wheelbarrow of manure. I had to stop three times to do that due to the pain. Finished then took the dogs and duck to the dam to play and swim. I noticed that the pain hasn't left me since and I'm exhausted. I'm cooked up more herbs for the jungle juice and even lifting the pottery kettle hurt my wrists and right elbow. I was that tired by 3.30pm I had to sleep. This happens a lot and I have to sleep in my car when coming home from work. It's gotten better lately though.

I'm meant to document very short term goals like how long I sit, stand, lift and walk in a day and increase it by one minute each day. Doing jobs that just need to be done can only be looked at if I combine all these things. I'll guesstimate that I can do 15 minutes and then need to rest. For maybe 15 minutes but as the day goes on this increases. I'll say 15 minutes and average it out over the next three days.

I started to watch a medical lecture on fibromyalgia online but didn't have time to finish it. Now every muscle in my body hurts, even the tops of my feet, so it sweet dreams from me to you whoever you are. Introduce yourself.