My medical issues...

I'm mentioning this so people UNDERSTAND my medical condition(s)... it's not for sympathy. It's not very nice, hence why I don't generally talk about it. PAIN I live with constant pain 24/7 and it's currently getting worse. It's listed as a chronic pain, that attacks the central nervous system affecting only limbs. Worst case scenario, this pain can slowly worsen until the pain is said to be worse than child birth obviously over an extended period of time. No reprieve, it's constant and 24/7.It's called CRPS - Complex Regional Pain Syndrome. Doctors don't know what causes it. Most patients get it after a major injury of some sort. However I didn't which is rarer, although not unheard of. As most get it after an injury, it is said there is a 50/50 chance that it heals itself. However I don't know if those statics apply to those who develop it without injury (like myself). Timeframe can be a few years. So doctors are unable to ascertain, at present as to whether or not my condition is temporary or permanent. I'm currently sitting in the "too hard basket", with the pain slowly worsening and awaiting to see if I heal myself or whether I'm diagnosed permanently. There is NO known cure, only pain management. I'm on pain medication and do some physio exercises to retain my strength.CRPS primarily affects one or more limbs. Firstly it affected my right hand and wrist. I noticed on 1 Dec 2011 that it was sore and swollen. Had a multitude of tests performed over a couple of weeks and ruled out Carpel Tunnel and both arthritis and oesto arthritis... not to mention other less common conditions. Perplexed, my GP refered me to Mackay Base Hospital to see a rheumatologist. July 2012 I went to see the specialist, only to find out they didn't have a rheumatologist there and I was seeing another type of specialist in Oncology. He spoke to the head Dr in that dept who saw me for 3-4 visits, then in Aug 2012 he finally refered me to the Townsville Hospital where an actual rheumatologist was. I waited for a confirmation letter (basically acknowledgement of receipt of referal and/or an appt) from Townsville hospital and did not receive one. So I went to Mackay Base Hosptial in Oct 2012 and spent half a day going from dept to dept, until I finally ended up in records. Records showed the referal, but that NO letter was typed and forwarded to Townsville. I then waited in admin, while they typed up the refferal and posted it! After a week, I got a confirmation, that I was on a waiting list in Townsville. We all know these waiting lists can be up to a couple of years, so I waited patiently.As it so happened I was visiting Townsville in July 2013, so I thought I'd visit the outpatients clinic at Townsville Hospital to see where on the list I was and ask for an approx ETA. I was informed they had been sending a rheumatologist to Mackay Base Hospital for one day per month for the past couple of months and that I should ask the outpatients clinic in Mackay.So back to Outpatients in Mackay. Yes they confirmed the rheumatologist had started seeing patients. There are 3 catergories of patients 1-3. 1 being urgent. I was informed I was listed as 2, however for some "unknown reason" my file had been removed that I didn't need to see the specialist. You're right in me thinking, what are these people doing?? I was so angry.I spent another half day that day at the outpatients clinic in Mackay, while they re-added me to the list and said I should receive a letter within a month advising appt details.YAY! A letter with an appt time and date - 6 Feb 2014.Meanwhile in Dec 2013, my left hand started to show the same symptoms, followed shortly after that in January 2014 with both feet having similar symptoms and the swelling also carrying fluid (which my hands do not have).I finally saw the rheumatologist on 6 Feb and she immediately disgnosed me. She'd not seen many cases, but she was 100% positive in her diagnoses.The pain is called complex because it is not one type of pain, but a variety of differnt types of pain. There is a dull ache from the swelling and discomfort when trying to make a fist/carry pbjects with swollen hands. Throbbing pain. Shooting/stabbing pain. Constant burning, like my hands and feet are on fire. Then there's pressure pain from touching, just a gentle holding/shaking hands my hands feel bruised and like ALL the bones are broken.So if we meet in person, kindly remember not to shake my hand or at least not too hard ;) HEARTI also have a dickie heart. Nothing serious, just a small murmur and an arrhythmia, which is known as Superior Ventricular Ectopic Beats. Basically the electrics of my heart misfire sometimes. That means on a normal day, it skips up to 5,000 heart beats within 24 hours. I was born with it, so I've never known any different and can run around like a lunatic with the best of them. It never affected me until I was 34 (in Aug 2004). That's when it first played up, but only for 3 mths. So doctors didn't know what exactly my heart condition was at that time. Doctor's were concerned as not only was my heart missing beats, but the beats were eractic also. Instead of simply having trigemy or bigemy beats, my heart had normal rthym, as well as both bigemy and trigemy beats all happening within 5-10 minutes.Then 2 years later, it played up worse. Skipping 15,500 beats within 24 hours. I was hospitalized and made a pin cushion and finally I was disgnosed 6 mths later. Heart played up for 18 mths in total that second time around. It settled down after diagnoses, as they knew how to treat it and I shouldn't be sick like that again :) I was sleeping 20/24 hrs a day... so the experience makes me appreciate life more :)Don't worry... it's all good :) :) :) It's nothing life threatening. I don't need a pacemaker, an operation and it's not likely to cause a heart attack. It simply makes me tired at times, after I've physically been running around or walked all day at the beach or in the bush (like this past weekend, hence why I'm so exhausted today). So when my heart plays up now for more than 2-3 days, I just go to doctor, get some pills and I'm back to my normal within a week or two. It can also leave me a little tired the next day. Or if I've physically been excessively active the previous day... but at least, no more prolonged sickness :) I may need to take medication later in life (fulltime), but not presently. Generally those born with this condition are not aware of it until they are in there mid-late 50's. As I'm an ex-athlete, so my doctors have theorised I put excessive pressure on my heart, hence showing symptoms young. OTHER Other than that, I suffer mildly from anxiety (not depression) and am dyslexic. Contrary to the beliefs of many, I'm actually an introvert (not an extrovert). I can be extroverted for short periods of time (up to 3 days sometimes), but primarily quietly contemplate and reflect is more me.It's funny, as a child I was never sick except the odd "flu bug". I never took medication for anything. I try not to take medication now, unless I need to. Unfortunately with CRPS I need to.Anyway... these are my so called ailments, but I don't let them stop me from getting out there and living my life as fully as I can, when I can... well not yet anyway :P UPDATE - 2016 Jan 31 Nerve pain feeds on Opioids, which I've never used. I was on max dosage of Nerve Pain drugs, which were having little effect. After going to a Pain Seminar, they mentioned some people were strong enough to wean off medication and just use their minds to control their pain. So that's what I'm doing. Some days are better than others, but I'm more mobile and doing more again :) Best of all, I'm drug free!