April 21, 2013

Back to the Doctor

Posted in Journey, ME/CFS, Progress tagged , , , , , , , , , , , , , , , , , , , , at 7:36 pm by Reva

After 4 and a half years I made my way back to my old ME doctor this week. It was a big day – four hours round trip plus a 2 hour appointment and I expected to be in such a mess by the next day (especially given I was so bad last week) that I’d have to call in sick the next day. I was very pleasantly surprised. I don’t know if some of the treatments he has put me on or coincidence but I’m certainly not going to complain.

I explained to him that I think that in addition to not feeling like the treatments I was doing at the time we last spoke were making any significant difference, I had struggled with balancing my years of learning about evidence based practice, so not recommending treatment to clients that don’t have some solid scientific evidence backing it. I told him that I’ve come to accept that the reason that the evidence is so loose in our treatment options because treating ME/CFS is so new and the research is still being done.

We went over what’s been happening since last time we spoke. He told me about the citric acid cycle (also known as the Krebs Cycle) which is one of the body’s mechanisms for producing energy. It usually uses carbohydrates as its main source, however there is some evidence that in people with ME/CFS there is a blockage reducing the body’s ability to use carbohydrate and instead use protein. This reliance on protein might be causing deficits in amino acids which limits the ability of the citric acid to produce energy. He has suggested a protein powder that is 90% protein and contains a complete range of amino acids.

Source: Wikipedia

I went to a health food store after my appointment to buy the powder and they salesman was trying to tell me that I’d go through the product really quickly and tried to sell me the large tub. I assured him that the “small” 750g tub would be more than enough (hello, do I LOOK like someone who does serious muscle building?).

After the discussion about the protein powder he told me that he had growing evidence that dysbiosis was likely to occur in ME/CFS. I need to get my head around this in detail but the basis of it is there are two main types of bacteria in the gut. He is involved in research that is finding that people with ME/CFS have an imbalance of these bacteria, frequently to a point that they don’t find any e. coli in some patients. He went on to explain that this can be then causing changes in the pH of the body…this went on with further explanation that made perfect sense at the time that I can no longer remember. In order to manage this, first a faecal sample would be assessed for the ratio of bacteria and if it was found to be imbalanced it can be treated with a combination of antibiotics and probiotics.

My next stop was across the hall to meet with the practice nurse. First she did a blood test which was looking at my immune reaction to about 60 foods. This was a finger prick test. Apparently the theory is that these foods reactions are linked to the dysbiosis, and that by avoiding the limited foods there may be an improvement in symptoms. Once the dysbiosis is treated the foods can usually be reintroduced. I reacted to wheat, cow’s milk, egg, yeast, corn, legumes and peanuts. I was told I only had mild reactions so the nurse said I don’t need to be super strict, but she said the cow’s milk and egg are probably the ones to be most strict with.

Doctor wanted me to re-do the standing test I did back when I first visited him as the first I was so borderline for POTS. I didn’t get the results for that as he’d left the office for a bit when I finished. I actually didn’t get light headed through it, although my legs were extremely shaky and I felt like I was swaying.

Lastly I was sent off with a heap of papers, and blood test requests arrived in the mail the next day. I return to see him in three months and in that time I still have to have a heap of blood tests, urine tests, faecal tests (or as the doctor put it, “wee and poo tests”) and breath tests. Just to keep things fun the nearest place to do the breath tests is about an hour and a quarter away, I have to go on three separate occasions and have to arrive no later than 9am on each occasion. That should be fun.

In the meantime, I’ve started the taking the protein powder – I took it the first afternoon when I arrived home and I’m not sure if it’s behind by good recovery or if it’s coincidence but I guess we’ll see – and I’m phasing in the dietary changes. I think I’ll leave that challenge to another day.

March 22, 2013

More Sleepless Nights

Posted in Crashes, ME/CFS, Progress tagged , , , , , , , , , , , , , , at 5:29 pm by Reva

For months I’ve been trying to work out what might be increasing my symptoms these last 9 months. One and a half years ago I started taking low dose amitriptyline to help me sleep. Before taking it I had no trouble falling asleep but I’d wake on and off throughout the night, sometimes lying awake for hours. Once I started taking it I still would wake once through the night but I would fall straight back to sleep.

Recently I wondered if maybe it might be behind some of my fatigue. Maybe it was causing me to be foggy through the day. A few different people have suggested that at the dose I was taking it really shouldn’t be causing problems. Amitriptyline has other uses and when used as an antidepressant it is given at much higher doses. At the low dose I was taking there shouldn’t be any issues. I was still curious. I don’t think I have any issues with tolerating medications and chemicals that other people with ME/CFS have but maybe the reaction for me is subtle.
imagesCAT7UHT2

I had a chat with my GP, and I also asked about high dose melatonin. She was more than happy to prescribe it, however given that melatonin works by resetting the body clock and I’d been sleeping well for 18 months I shouldn’t need it. My body clock should be reset.
That night, and the following six, I cut the amitriptyline tablets in half to reduce my dose. I was sure I was on a winner. No change to my sleeping pattern. I was falling right to sleep at night, then waking once through the night and then waking up with my alarm. The waking was as difficult as ever, but it was no different.

The next week I cut out the tablets. For another week things continued on the same. Wake once, then straight back to sleep until my alarm went off. I even slept well through the heat when everyone around me was complaining of sleepless nights.  But last Saturday morning I woke at 1am. Then again at 4am. And then I didn’t go back to sleep for an hour and a half. The result – complete overwhelming fatigue and pain. The kind that makes you feel nauseous, that sits there in the forefront of your mind stopping you from being able to distract yourself with anything else. The next night I was back to my usual “wake once and go back to sleep” routine so I decided one night of poor sleep isn’t enough to change go back.
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Then Tuesday morning I had a repeat of Saturday morning. Not so easy to cope with the overwhelming fatigue at work. It reminded me why I’d gone on the amitriptyline in the first place. This used to happen so frequently that I was struggling with work; but one day I should be able to get through.
It was the second replay on Thursday morning that changed my mind. Three sleepless nights out of six compared to I think one in 18 months is pretty clear that the amitriptyline was doing some good. Even if there is a little fogginess (which I don’t feel reduced at all, but I don’t know how long it would take for it to completely get out of my system), the fogginess is actually easier to work with than the severe fatigue, nausea and radiating pain I feel after the days is a thousand times harder to live with.
funny-sleep-comic

So last night I put myself back onto the amitriptyline. I had a good night’s sleep and I think given a few more I should be back to my normal, or at least my most recent normal, and I’ve crossed one more theory off my list.

March 11, 2013

A Week in Review

Posted in Crashes tagged , , , , , , , , , , , at 12:44 pm by Reva

I’ve had a busy week, which has been both good and bad, and with the current heat wave and humidity my brain is just not working.

  • I think I have a new symptom.  Nausea.  I’ve had it off and on for a week now.  A friend who works in chronic pain management tells me that nausea is often decreased if you can manage to distract yourself with thing you enjoy.  Makes sense – the worst of it has been during long meetings.   Nausea
  •  I had to work for a day on the other side of the city in preparation for some students we have starting with us in a few weeks.  It’s a 1½ hour drive one way if you get a good run on the freeway.  Instead of putting myself through 3+ hours of driving I took the opportunity to have a catch up with a good friend who I’ve been trying to catch up with since Christmas.

 Traffic slows to a crawl on the Monash Freeway...

  • I had the opportunity to spend some time with some academics in my profession.  I’d really love to do some further study, it’s something I’ve looked into off and on over the past 5 or 6 years; but I don’t think my brain would let me, especially at the moment.

how to title your thesis

  • I finally took the step of calling the office of my specialist.  I was expecting to be told that either they weren’t taking new patients (and given that it’s been at least 4½ years I expect to be a new patient) or if they were there would be a 6 month wait for an appointment.  It turns out that I was right that he isn’t taking new patients, but I’m still in their system so they booked me right in…in a month’s time!!

 

February 22, 2013

From Then ‘Til Now

Posted in Journey tagged , , , , , , , , , , at 8:27 pm by Reva

With my current lingering crash I’m considering returning to the specialist I saw about 5 years ago. This specialist played a big part in my acceptance and understanding of ME/CFS, and while life has intervened since, I think he may hold the key to some symptom relief. You can find the prequels to this post here, here, here and here and here and here and finally here (hmmm, maybe time to update and make this a little more user friendly…) .

A while after visiting the naturopath I found out a GP in Victoria who specialised in ME/CFS. I was pretty excited, especially when I found that I didn’t need a referral. I was a bit concerned about the cost of the appointments but the cost of interstate travel to get there, not to mention the toll a visit to this doctor was going to take on my health.

I was pleased when I found out the initial appointment could be done remotely, using surveys I completed and sent back and a phone call with the doctor’s practice nurse to collect some more data. There was also a request for blood tests which were sent back to the doctor.
I learnt a bit from the phone assessment. One of the things that really stuck with me is that the only activity that isn’t considered to use energy when measuring activity levels is watching television (and sleeping or lying down). I watch a lot of television. As a general rule, if I’m not working, sleeping or doing the essential household chores, I’m watching television.
The second visit was a face to face visit with the doctor. He was a kindly man who explained things really clearly, with lots of diagrams. He wrote so much down for me to take home, obviously used to working with people who had poor memories. He did some more tests, and prescribed a few follow on lab tests based on some of his findings.

Pin Cushion

Just another trip to the pathologist

One of the tests he did that day was a standing test. I started in a reclining position, and blood pressure and pulse rates were checked. I then had to stand with these tests being repeated every two minutes for up to 20 minutes. While standing I wasn’t allowed to move – not even wriggle my fingers or toes. The results were put into a computer program and changes in my pulse pressure and heart rate were calculated and graphed. Apparently this test is done to rule out POTS. During the test there was a 29% increase in my heart rate and a 29% decrease in pulse pressure. I was told that a 30% change in pulse pressure warranted further investigation for POTS. He decided to treat this as reduced blood volume and prescribed an electrolyte solution to drink a litre of each day, along with a medication to stabilise my heart rate.
He suspected I also had symptoms resulting from reactive hypoglycaemia and increased urinary excretion of potassium, so he sent me off for some tests to follow this up.
And finally at the end of the visit, using information from the questionnaires and the tests that had been completed he actually officially (well, to me it was official) diagnosed me with ME/CFS. We went through the Canadian Diagnostic Criteria together and the outcome was pretty clear. A few of the criteria I wondered about, like the immune manifestations. I never (touch wood) get sick. He pointed out that that I have chronic hay fever, asthma and allergic dermatitis. His examination also showed I had tender lymph nodes which fall under that category.
I decided to bring a good friend along to my second appointment as while the information the doctor gave me at my first appointment made sense at the time, I had trouble explaining it to others. At this second appointment he confirmed that I had reactive hypoglycaemia, high excretion of potassium (which apparently causes “sighing breaths”) and borderline ratio between Vitamins D2 and D3 (which is apparently related to some dysfunction in the immune system). He decided to treat the potassium issues. The vitamin D issue was so border-line and the treatment was intense and long, and it was questionable whether it was having any impact. I went home with 2 new medications – one to prevent the potassium leeching out of my body, and another to replace the potassium.

I did have a third appointment which was a phone consult. After this appointment I started a regime of vitamin B12 injections, starting with one a week, and working up to daily. They were subcutaneous (like insulin) and not intramuscular like vitamin B12 Injections usually are so I learnt how to do them myself.

I was starting to feel like this!

I was starting to feel like this!

I probably kept all of this up for another 6 months or so. The B12 injections were the first to go. I moved interstate in this time and it became inconvenient and expensive, and I didn’t feel that I’d made any progress. Slowly the other treatments stopped too. The potassium channel regulator went next. It was also expensive, and it didn’t think it made me feel any better either. In the end I stopped the electrolyte solution because of a number of reasons. Like all the other things, I didn’t think I felt any better for taking it. It had a slightly artificial taste to it. It had sugar in it – it seemed like a contradiction to take on an extra 60g of sugar and 400kcal a day when I was already struggling with my weight and had a number of risk factors for Type 2 Diabetes, when the solution didn’t make me feel any better.

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Skip forward about 3 years to now – I’ve been taking that electrolyte solution (half the prescribed amount) for the past month or so. I’m still not sure it makes me feel any better but it feels like I’m doing something. I feel like I’m starting all over again from scratch. Well, maybe not scratch but close to it. My next step is to discuss “where to from here” with my GP. Unfortunately I can’t get in to see her for another two weeks, but I guess that gives me another two weeks to write a list (because there is no way my brain is going to let me remember on my own).

December 31, 2012

New Year, New Challenges

Posted in Crashes, Journey, ME/CFS, Progress, Strategies tagged , , , , , , , , , , , , , , , , at 7:07 pm by Reva

New Year’s Eve looks even better than I planned.  I finished work two hours early.  Set myself up on my new banana lounge under the shade of my beautiful Japanese Maple, watching my dog explore the backyard, drinking my lemon lime and bitters and writing.  When the sun gets low I’ll move inside and set myself up on the couch in some comfy pyjamas with some snacks and a low alcohol sparkling wine and watch DVDs  until the fireworks on TV (and there are rumours of some local ones) or I fall asleep, whichever comes first.Maple

 

I’m not one for New Year resolutions.  I’m pretty sure I’d be setting myself up to fail.  But this year, or this past six months, has been the worst I remember health wise.  So I’m determined to make some changes.

Since my crash back in September I admit I probably haven’t been looking after myself as well as I could.  I’ve probably bought more take away food, I’ve nearly emptied my freezer supply, I haven’t eaten fruit, not paced myself well, have gotten lax with my planning which has meant more frequent trips to the supermarket…the list could go on forever.  Up until yesterday this is where I was going to focus my “health reform”.

The first thing I figured I needed to do was work out what was causing this prolonged poor health state, if it was just the above or was the above actually the result of a crash that has just been perpetuating itself.  I’ve been shutting this out because in the past I’ve found that for me a crash is triggered by no one thing, but usually a combination of things that have the audacity to hit me all at once.  The difference this time is I don’t seem to be recovering from the crash, at least not back to my previous capacity.

About six months ago my role at work changed significantly.  I wasn’t happy about the change, but that’s another story.  On the surface (and I suspect this may have potentially been behind the move) the move looks like it makes my life easier.  It’s less complex clinically, there is less urgency to get things done therefore there should be less overtime and on the side, parking was better so I wouldn’t have to park so far from work.  Unfortunately my workload was spread across two campuses, 10minutes walk apart.  I picked this as an issue early on and I tried to plan my week so that I wouldn’t be walking back and forth each day (driving sounds like the easier option but at one of sites it’s about a 10 minute walk to the nearest untimed free parking).

In the past few weeks I’ve been doing some research around chronic illness/disability in the workplace.  One of our OH&S representatives sent me some information which I finally had a chance to look into over the weekend.  As I was reading it I came to realise that the move at work may have been a bigger detriment  to my health than I first thought, that the things that I’ve been doing my best to not complain about for the past six months may be more than just annoying.

A lot of the management ideas portrayed in the information included things I already tried to do in the past, and were largely based around setting up your work space.  I now share a desk with two other people.  I can no longer stick reminders to myself in the middle of my desk because they’d be in other people’s way.  Using my diary is difficult.  It contains patient information so I don’t like to take it home but I’m frequently starting at one place and finishing at another so somehow it ends up at home. I then forget to take it back to work so I miss meetings, forget phone calls and overlook orders I’m supposed to place.  I’m starting to look very unprofessional.

My current role involves a lot more talking with patients, education and negotiation.  My brain does not do these well.  I have a very scientific brain.  It does not cope well with rephrasing and coming up with analogies.  I’ve noticed it being so much harder to speak my thoughts. My previous role was a lot more complex in many ways but I didn’t have to put my explanations into terms that patients could understand.  It also involves a lot more time on my feet, talking to patients (I refuse to sit on patients’ beds for a number of reasons) and chasing down other staff, and supplies.

For now I can’t change these things easily.  I’m not happy about it but that’s life.  I am going to put together a case, with the help of my OH&S friend and my psychologist, for some changes but given the complexity of politics in our organisation I’m going to tread carefully and take my time.

In the meantime I’ve considered what I can change to help my case.

  • I need to find a way to get to work on time.  I don’t cut hours, but if I arrive to work late I stay back late making it up which means I get home late, and start to feel like I have a routine of work, eat, sleep.
  • I have started to use the online calendar at work.  While this might appear an obvious solution, our organisation does not have enough computers (considering EVERYTHING is done online), so it’s not a final solution but I think it will help.
  • I’ve set a very strict timetable which I’m following starting today.  Into this timetable I’ve inserted all hours I’m allocated to each different part of my role, but more importantly I’ve included my tea breaks. Tea breaks are not something that is really routinely taken in my workplace however it is an entitlement and I believe it will go a long way to improving my productivity and health.  To help me with this I also have allocated a block of time at the beginning and end of each week to plan my week and ensure all the paperwork is finished on time.
  • I’m colour coding my diary.  I’ve always been jealous of people who do this but some of information I’ve been reading recommends doing this to help with visualisation.  I started doing it with my online diary about a month ago and it’s worked brilliantly so I’m going to start doing the same with my paper diary as I rely a lot more on that.

In addition I plan to:

  • Return to my fortnightly meal plans.  I don’t stick to them strictly but they do mean that I don’t have to go to the supermarket more than once a fortnight and I don’t end up buying my lunch at work
  • Drink less caffeine and artificial sweeteners.  I don’t have a lot of caffeine – I try to limit to no more than 2 caffeinated drinks a day and I rarely exceed this (and never after lunch).  Artificial sweeteners on the other hand have gotten a bit out of control.  In a bid to drink more fluid without sugar I have been drinking a fair amount of diet cordial.  The trick will be to drink enough fluid to keep my head from spinning. Today stocked my filing drawer with peppermint tea bags.
  • Later in the year, once I’m going to talk to my GP about reinstating some of my previous treatments (more on those another day) and potentially revisiting my CFS doctor.

 

So no resolutions but a long list of good intentions that I think are largely achievable and hopefully will go a long way to increasing my workplace situation.  I recognise a lot of other things I could do, but I think that by focusing on these will actually mean many others fall in place.

 

 

Wishing that 2013 brings you all happiness and good health xx

 

December 6, 2012

Posted in Crashes, Journey tagged , , , , , , , , , , , , , , , at 8:28 pm by Reva

This time 2 years ago I was assessing an ICU patient who was waiting for a transfer to the wards.  He’d had a laryngectomy the day before, and despite no longer having a voice he was rather chatty.  As a result it was a long conversation as my lip reading skills are pretty poor and he had to write a lot down.  His nurse was teaching her student, just behind us.  All of a sudden my ears started to ring, and I felt hot and flushed.  I felt extremely nauseous.  I quickly excused myself and walked over to the nearest chair.  I put my head in my hands.  The chair was behind the nurse.

Running through my head was a thousand thoughts.  Was I going to be sick? I didn’t want to be sick.  But if I moved I’m sure I would be.  Where was the nearest bathroom?  About 10metres away.  It may as well have been 100m.  It was a staff bathroom with a keypad on it to keep visitors out.  I didn’t know the password.  Where was the next nearest bathroom?  Way down the corridor.  I didn’t feel I could talk.  I could feel the sweat literally running down my back, and my face.  My ears were still ringing, the smallest movement of my head made it worse.  I tried to take deep breaths.  I could hear the nurse saying to the patient “Did you have something else to tell Reva?” “Is there something you want to ask her?” I glanced up.  The poor patient was madly shaking his head and gesturing towards me.  The nurse turned around to look at me, just as another nurse came out from behind a curtain.  They both lunged for me at the same moment and each grabbed me, one under each arm.  Strangely there was a bed sitting out in the communal area.  They walked me over, lay me down and put up the foot of the bed.

Fainting

Immediately I felt better.  Apparently I was ghostly white.   One checked my blood pressure and another checked my blood glucose level.  Both were normal.  They called over the new doctor and said “Have you met Reva? She works here” – nice way to be introduced.  They were debating what to do with me.  They offered their comfy couches for a lie down for the rest of the day.  I was adament being the only person in my department on duty that I would be fine to go back to work.  They were feeding me fruit juice and water.  Then suddenly someone decided to would be best to send me to the emergency room, just for a full check.  Before I could blink I was being transferred through the halls of my workplace on a stretcher, down into the ER.  Fastest way to get into ER I tell you.

There I sat for the next 3 hours.  I was no longer acutely unwell but I felt weak and a little embarrassed.  I was given some sandwiches and fruit.  The process of eating was draining so I just picked.  Saline was run, I was hooked up to a cardiac monitor, bloods were drawn.  And I sat.  Eventually I was told there was nothing wrong, it was probably just a symptom of CFS and if it was cardiac we’ll just wait until it happens again.  Lovely.

A few months later the same symptoms overcame me.  This time I was with a patient who’d had an amputation (I’ve been working with patients who have had major surgery and wounds for years so I promise I wasn’t just woozy).  I sat down when I felt the symptoms and the patient asked if I’d like him to call a nurse for me.  I said it might be a good idea.  Next thing he swings himself up on to his crutches.  I told him it was okay just to press the call button, but he insisted that “buzzers are for sick people”.  He rounded up a nurse and same story.  Normal BGL, normal BP.

My GP is great.  She believes they’re harmless vaso vagel events and is happy to refer me to a cardiologist, but this has in total happened about 6 times in 2 years, so putting me on a cardiac monitor isn’t likely to pick anything up.  I suspect its (just) orthostatic intolerance.  One time I was seated when the symptoms came on – that one is a mystery, but all other times have been when I’ve been on my feet for a while, or very soon (<5mins) after I’ve stood up from lying position.  One of the most recent events was also in ICU.  The nurses grabbed me, and stuck me on the ECG machine but there were no abnormalities.  After this they threatened to stick the holter monitor on me every time I went in.

Just another frustrating symptom of ME/CFS I guess.  I haven’t had one of these episodes for over 6 months.  Here’s hoping I haven’t just jinxed myself.

November 29, 2012

Tug o’ War

Posted in Journey, ME/CFS tagged , , , , , , , , , , , , , at 9:27 pm by Reva

Tonight I was skimming through the latest internationally accepted criteria for diagnosis of ME.  I haven’t read it in detail but a funny thing struck me.

I was reading through the checklist of symptoms for diagnosis, and I thought, “Yep I still have it”, then I didn’t know whether that was a good thing or not.  I mean, it sounds ridiculous to be happy to have a chronic debilitating condition that has no known cure.  But what if I don’t have it? Then what’s wrong with me?

Pictograms of Olympic sports - Tug of war. Thi...

I remember feeling the same confusion when I first was diagnosed.  After years of being unwell, tests and not knowing what to call what I had, I finally had a name for what I was experiencing. Yay. But it will never go away.  Not so yay.

I’ve been in a lull with my treatment for the last few years.  I’ve just been riding the storm I guess.  Every now and then I read about a new test or theory and I think, “maybe I should try it” followed quickly by “but will it achieve anything”.  Things I’ve tried in the past have been costly but I haven’t noticed any change but taking them.  I’ve probably become a bit lax in some of my management stategies.

After seeing a psychologist a few years ago I decided that I couldn’t let ME/CFS wasn’t going away, so I couldn’t let it control my life. I took back that control but maybe a little too much so.  I have too much caffeine and alcohol, not enough fluid.  I don’t pace myself as well as  I used to.  This past few weeks have been pretty chaotic, and I’ve consciously tried to change some of these things.  But I’ve also been thinking, maybe it’s time to take a stand and start looking after myself a little better.

October 21, 2012

Not Quite the Light At the End of the Tunnel

Posted in Journey tagged , , , , , , at 2:33 pm by Reva

For the next few months it was easy to make excuses for my fatigue.  I was doing exams.  I was moving.  I was starting a new job in a new town.  I was increasing my working days from three days to four, then four days to five.  I was stressed when that job finished and I didn’t have a new one to go to (and that I didn’t have a car for job hunting because my car was burnt by some little angels in the town I was living in a week before I left – but that’s a whole other story).  I was moving interstate.  I was starting (another) new job.  I was house hunting.  I was moving house.  But eventually it was getting harder to ignore.

I have to admit if it wasn’t for our department’s wonderful receptionist I’d probably be no closer to a diagnosis to where I was then.  I’d still be pushing myself to work full time and be convinced that it was normal to feel as horrible as I did by then.  But with her gentle prodding I finally was convinced to go back to a GP about the problems I was having.  And to my surprise when I explained what was going on (I didn’t tell her quite how long it had been going on) she agreed that something wasn’t right.  She actually mentioned CFS.  But first she sent me off for another round of blood tests.  I spent a week actually hoping I had Coeliac Disease – I knew I could do something to manage that even if I could never eat decent bread, M&Ms or drink real beer again.  But when I went back and everything looked normal this GP actually referred me on to someone else!!   And when she was contemplating who the best physician to send me to in an isolated state she actually listened to me when I mentioned one of the doctors on her list didn’t like dietitians (“well we won’t send you to him then will we”).

The lovely physician sent me off for all sorts of tests.  My (least) favourite was a sleep test.  Being hooked up to wires with sticky gum stuff, with wires up your nose and being told “we get the best results if you can just fall asleep on your back” – sure, no problem! I can fall asleep on my back, with wires poking the inside of my nose!!  But apparently I slept enough to get the all clear (“it’s alright love, as long as you’ve had a 30 minute sleep at some point through the night we get enough information.  And I’m pretty sure you did.”). After 6 months of tests all we came up with was some allergy markers were a little high.  So at that point the physician told me I most probably had “a fatigue syndrome”.  He felt that I seemed a little depressed (wouldn’t you be?) and put me on some antidepressants.   He told me that there wasn’t a lot he could do for me but to pace myself and take some time off if I need it, and to get in touch if I was concerned about anything.  As frustrating as it sounds I really did like this doctor and at that time I felt relieved that I had a diagnosis.  True to his word, whenever I ran into him at work he’d pull me aside and ask how I was, and when I mentioned some strange toe numbness and dizziness he told me to call his private offices and arranged an MRI to rule out MS (and went through the MRI results explaining that the little white patches were normal “minor brain damage” related to age and I had “surprisingly little damage for someone (my) age”).  Luckily no MS.

In the end I just found myself a good GP (unfortunately the lovely one I met in the beginning retired) who told me that I probably knew more than he did about the condition but if I ever wanted him to read up on something or have further testing or try a treatment he was happy to help me out.  I stuck with him for the next 3 years and he even called me when I moved interstate to ask if I’d be interested in being involved in a research project being done at the local university.

But still I wasn’t satisfied…

October 19, 2012

What is this ME/CFS You Speak Of?

Posted in ME/CFS tagged , , , , , , , at 5:44 pm by Reva

Myalgic Encephalomyelitis(ME)/Chronic Fatigue Syndrome(CFS) was first described by the World Health Organisation (WHO) in 1969 as a neurological condition.  It is a complex condition with a wide range of symptoms that affect various systems in the body including the neurological system, the gastrointestinal system, the immune system, the endocrine system and the cardiac system.

While fatigue is a key symptom in diagnosis it is by no means the only, or for many sufferers the worst.  In fact one of the most common symptoms, experienced by approximately 95% of sufferers, is Orthostatic Hypotension, an often sudden drop in blood pressure.  Other common symptoms include sensitivity to light and sound, difficulty regulating body temperature, pain to varying degrees and irritable bowel syndrome.

While there is much debate around what constitutes diagnosis, it is largely a process of elimination although there are now a number of diagnostic guidelines around.  My doctor, used the Canadian diagnostic criteria for diagnosis, and I believe these are used by many doctors in Australia.

There are many theories as to the cause and there is slowly more research being done to identify the cause, or more likely causes.  This research will hopefully one day lead to a successful treatment but currently there is no cure.  I plan to write about treatment that people find helpful as a part of this blog.

October 16, 2012

In the Middle

Posted in Journey tagged , , at 6:53 pm by Reva

I decided to break up the story of how I was diagnosed with ME/CFS as I feel like it went on forever and I thought that if I felt like that then it’s probably worse for everyone else.  But I will continue it a little today.

After I went home from the GP that day I went about my daily business.  The fatigue and overall weakness was still there but like all the other times I found other reasons for it.

About 6 months later I spent a weekend trying to write an assignment.   I actually spent the weekend sitting in front of the computer staring blankly at the screen because my fingers and my brain weren’t communicating.  I couldn’t make sense of the paragraph explaining the topic of the essay, and how I could answer it.  Remembering what the GP had said the previous time I was there I made another appointment for the Monday.  This time I got a different doctor and the conversation went a little like this:

GP: what can I do for you today?

Me: I’ve been really tired and can’t concentrate. I had some tests about 6 months ago.  My iron levels were borderline.  Do you think I need this looked into? The GP said I should come back if was still unwell after 6 months.

GP: Oh, you’re a uni student.  So did you have a big weekend?

Me: No, I was too tired to do anything.  I spent the weekend moving between the bed to nap and the computer to write an assignment.

GP: I ask all uni students that on a Monday.

GP: (looking me up and down) You know, if you did a little exercise you’d probably feel a little better.

Me: I thought that too.  I’ve tried to pick up my exercise.  I tried the gym but it made me feel worse.  I go for long walks with my housemate – we went for 45 minutes 3 times last week, up and down some hills.  But it keeps getting worse.

GP: The bloods were fine 6 months ago.  Do you just want a Doctors Certificate?

Me: No thank you.

GP: Well keep working at the exercise.  I’m sure you’ll feel better soon.

And that was it.  He sent me on my way.  I failed the assignment but I refused to take that certificate.  Can you understand why I gave up there?  It makes me mad just thinking about this guy.

Angry Bird Fist

When I got my diagnosis a few years later I wanted nothing more than to make a complaint about him because I’m convinced that if this consult went in a slightly different direction the next 2-3 years might have gone a little differently but lucky for him I didn’t get his name.  Or lucky for me because making a complaint probably wouldn’t have achieved much anyway.

I’m really not sure how I made it through the following year.  It was the placement year of my course.  I spent 6 weeks on a community placement in the city.  Lucky for me the office we worked for didn’t have a lot of space so they only wanted us in the city 3 days a week and asked us to do the assignment work from uni or home.  On the days we were required in there I had to be on a train at about 7.30am, and would get home about 6.30pm.  The rest of the time I only had to drive across a few suburbs.

My next placement was a 9 week clinical placement.  My travel was a little longer – I had to be on the train at 6.55am.  I had a 10 minute walk to the train station.  If I was lucky I’d be home by 6.30pm, but it was usually more like 7.  This progressed from 2-3 days a week for the first 7 weeks, then 5 days a week for the last 2.  Easy to explain my fatigue this time!!  The days we weren’t at placement we had cooking days at uni (4 hours on my feet), lectures and tutorials with group assignments.  Oh, and i had my part time job on the weekend.

I was lucky with my next placement.  It was 5 days a week but only 2 weeks and it was quite local. Mostly this was a big group assignment that involved working around a table to problem solve.

My final placement was in my home town.  Up until this point I could explain away my pain and fatigue with all the work, travel and stress of an intense workload at uni.  And unlike a lot of my classmates I wasn’t living with my parents so had to do all the things involved with managing a house too.  By this time I came to think that pain and aching and lack of concentration and all the other things I was feeling were all a normal part of being tired and that everyone felt it.

But this time was a little different.  This time my mum was watching me.  I had great intentions for this placement.  They were long days but I was only a 10 minute walk from my house.   After day 2 I wasn’t getting up in time to walk.  I drove the 2 minutes instead so I could get those extra 8 minutes in bed.  And when I got home I’d lie on the couch until tea was cooked (oh the luxury!) and then after tea I’d lie on the couch until bed time.  And then the cycle would start again.  For the first week or two I convinced my parents that it was normal, just my body getting used to a new routine.  But after that it was harder.  By the end I was even starting to doubt myself but the memory of the last time I’d brought it up with a doctor, a year ago by now, put me off doing anything.  And besides, it was time for job applications and exams.