Well, I know I haven't been around much online lately (apart from on Twitter!). I am having a lot of health problems and am finding it very hard to use my PC! I really miss everyone whom I usually talk to on Puzzle Pirates, and on other websites and forums =(. I also really miss being able to blog, update my websites, go on all of my favourite forums and make digital art! I thought I should write this post, just to let everyone know that I am alive, and what is going on with me =).
Well, the last few months have been kinda hard for me health-wise. After having myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for the past six years, I suddenly found myself experiencing a bunch of new and scary symptoms.
As a bit of background info, I have lived every day for the last six years with:
- Extreme physical and mental fatigue (to the point where everyday tasks like remembering things, showering or brushing my hair is difficult). I take several naps during the day, and get a full night's sleep, but no amount of sleep fully refreshes or cures my fatigue. I use a wheelchair to go shopping, or to go out anywhere that involves more than a tiny amount of walking
- Post exertional malaise (massive worsening of symptoms following any physical or mental exertion or stress; it can take me several days to recover from a few hours out shopping in my wheelchair or from cleaning my room, or it can take several weeks for me to recover from the drive to the city, for example)
- Frequent severe headaches, migratory myalgia and arthralgia (horrible joint and muscle pain that moves from place to place, but has no obvious injury or swelling associated with it)
- Problems with short-term memory and concentration, and many other cognitive difficulties (these become a lot lot lot worse when I am especially fatigued!)
- Blurred vision and difficulties with depth perception (hard to pick up drinks off tables, etc.)
- Numbness and tingling in various body parts for no apparent reason
- Losing balance (and crashing into door frames and walls!)
- Sensitivity to light (to the point of having to wear sunglasses indoors some days - especially in supermarkets or other shops that use those bright flurescent lights!)
- Sensory overload - feeling of immense anxiety if having to listen to/focus on more than one thing at a time (especially if my dad plays his guitar loud while people are talking and the tv is also on loud - I can't cope with it and it's terrible!)
- Occasional palpitations of the heart
- Nausea
- Dizziness, shaking, feeling faint, occasionally passing out (most often while showering!)
- Low-grade fevers, difficulties adjusting to temperature change, night sweats, day sweats
- Decreased appetite
- Tummy troubles
- Sore glands, sore throat and general flu-like symptoms
- Associated depression
A few months ago, however, my ME/CFS symptoms all got a lot worse, and new symptoms appeared. Instead if dislocating a bone once every month or two, it started to become a daily occurance (and started to affect almost all my joints! Elbows, knees, toes, fingers, thumbs, shoulders etc.). I was clinically assessed and diagnosed as having hypermobility syndrome, or Ehlers-Danlos Syndrome.
All of my joints started swelling up, and I was in terrible pain all the time - a lot worse than my usual ME/CFS pain. I was unable to walk without limping terribly, and I suddenly found myself unable to use my hands to do pretty much anything (typing, holding a knife and fork to feed myself, etc.). Around the same time, my heart palpitations became much more frequent, and much more severe. On top of this, if I try to do anything that involves even a tiny amount of physical exertion, I shake like crazy and sweat uncontrollably! It's awful!
Anyway, at first I put it all down to just ME/CFS being evil. I thought I was just going through an extra bad patch... but things just kept getting worse. Blood tests showed that I had rather severe inflammation or infection somewhere in my body. But where? In an adventure in trial and error, I ended up being put on prednisone - a corticosteroid - to see if it would help the bizarre swelling and pain in my joints.
Miraculously, it did work! And it worked really fast too; within a couple of days! I felt so much better than I had felt before. I mean, I was still not able to do very much at all, but I could definitely feel a difference. After that, I was put on morphine - which is an amazingly awesome pain killer. I am not completely pain-free, but this wonder-drug allowed me to type and use my hands, and to eat again! It was awesome.
Although my pain was now being treated, the cause of my symptoms was still a mystery (so were my heart problems!) I was refered to a cardiologist and a rheumatologist to see whether either of them could find anything that could be causing my sudden worsening of symptoms, or my new symptoms.
The closest rheumatologist was 400kms away in the city (that is more than four hours by car). I went to see her last week. She agreed with my GPs diagnosis of hypermobility/Ehlers-Danlos Syndrome, and thought that I could possibly also have fibromyalgia. She is doing a heap of tests, including blood tests and bone scans (luckily I can have all of these tests locally!) Depending on what the results of these tests show, I might need to go back to the city and see her again in January. I mean - in a way I don't want the tests to show anything... but on the other hand - it would be pretty awesome if they found something that was easy and quick to fix, and I could feel better!
Anyway, a few days later, I went to see the cardiologist, locally. He was awesome, and had experience treating other people with ME/CFS and EDS! He did some diagnostics and determined that my resting heart rate is way too high. I had an ECG, and have to have an echocardiogram and a holter test next week, and another test in melbourne in two weeks time (yes... another trip to the city... before I have fully recovered from the last one! :S)
Lastly, at the moment, I have a sinus infection on top of everything else, which is really not helping at all lol!
Anyway, that is my health update!
~Adrielle =)
