Not sure where I left it last, I really must get better at posting more often.
Well it's been and interesting few months to say the least! Covid hit NZ in a bit way again so I have been waiting since earlier this year to see the Pain Management Clinic at our local hospital, after completing their rigorous screening process of 6 hour online seminar and questionnaires. I had plenty to keep me busy with numerous things on the go, my teaching course, a advocacy course with EDS Int'l, therapy and assessment for our nieces, doing a month challenge for EDS awareness month, working full time and trying to figure out my long term plan with my newly diagnosed conditions.
So where am I at? I have completed my first session with the Pain Management Clinic for their Brief Pain Management course for Chronic Pain after reading their manual 'Manage Your Pain' by Dr Michael Nicholas from Australia. The Physio and Pain Psychologists we are working with are both really nice and the group im in obviously have their own stories to tell. I think most of it I already know, but just having the time to look after myself and get a bit of relaxed exercise has been really good for me, especially as I don't get out of the house much anymore. I have been back to the Rheumatologist, this time was kind of a second opinion really. He is happy with my progress and thinks I should bite-the-bullet and up my Amitriptyline to 20mg but wanted to rule out heart arrhythmias first, I have had some really low Brady-cardiac moments on the 10mg, including when I had Covid back in March, 47bpms which is really low for me, normally I only dip that low if Im sleeping. My GP did a EKG at their centre and so far all looks good so ive been on 20mgs for a few months now, apart from zonking out really early now (as soon as i sit down) things seem to be going ok. Im able to function the next day ok... but Im very grumpy and groggy in the mornings which makes school lunches, school runs and early appointments really interesting!
When i visited the GP for the EKG we decided that we were going to revisit my two major specialists (Bowel and GYN) to see if my long term plans are going to be affected by the EDS diagnosis. The first visit this past week was back to my colorectal surgeon as I have a prolapse, pelvic floor issues and slow transit/spastic colon issues (IBS). Due to my strict diet and daily movacole my physical exam went really well no further prolapse and my hemorrhoids are of very little significance and dont need surgery. That could not have been better news! We do however have a sneaky suspicion that there might be some issues around stomach and small bowel due to my diet needing to be so strict so before I revisit the dietitian he has ordered a Gastroscopy and a Hydrogen Breath test. If both of those tests come back normal, he will revisit the large colon to look for issues there. I still have pain, bloating and gas when ever I eat, not to mention reflux if I have anything outside of my daily, which is limited to only breakfast (fodmap muesli) and rice and veges for tea. The only other thing consumed is liquid, so im fasting for 12 hours a day, having a meal, fasting for another 12 hours. My weight is down to 49.5 kgs which is the lowest in a while and im definitely back in the underweight category. Not a bad thing as I recently went through a stress eating stage where I became quite unwell physically.
Next is the Gynecologist in another months time to talk Endometriosis, Hysterectomy and what that means with Ehlers Danlos.
I have also embarked on a personal journey to gain control of my chronic fatigue and Fibromyalgia (Central Sensitisation). From what I have read my exercise plan, diet and relaxation techniques (which are currently non-existant) should see a huge reduction in flares and aid me in getting the right mix of exercise and rest. Im learning a lot in the pain management side of things and to be completely honest, this is the first year of my life in quite some time Ive felt a reduction in my pain. It helps me to have faith in the process, as I only have me to help moving forward and its going to be a long and slow decline, so I need to be grateful and use the motility I have now while ive still got it.
Next few updates im sure will be lengthy ones, and im sure this one will get edited a million times because I have forgotten to add something... brain fog is no joke and Im surprised I managed to communicate at all sometimes.
For now I must go as my therapy app just went off, its time to take my Amitriptyline....
