The gap was tremendous.. It feels strange not to have blogged in over a year.
So much to report, I don't know where to start...
The past 24 months has been a roller-coaster ride to say the least! I think we left off after my last specialist appointment and probably before my car accident. Yes, I wrecked my car Xmas of 2019 and suffered a bad whiplash and concussion and had a rough few months recovering from that while dealing with work and family. Funningly enough i wrecked it on a hot summer day, racing in 5pm traffic taking my father his weekly groceries while on the phone to him (hands free of course). Caring for my family is all I have known this decade and its what i love doing... but sometimes it was at the expense of myself... I think that day was one of them. Mum came to my rescue and took me for a neck x-ray. Nothing broken and off to the physio I went. She worked on me for a number of weeks and ive slowly come right.
Come February 2020 during the stress of working Xmas and shopping for a new car we were faced with a family related issue during that time and my stress levels skyrocketed. I was coming up to my 40th birthday with no real answers to my health concerns, getting used to our life of childlessness and caring for a very ill father who made it through sepsis, toxic shock and C-diff and was trying to get his life back with assistance from his children. It was a Monday night and we got a call from a friend of my nieces who asked us to come pick up my grand-nieces from their home and the police would meet us there, just for the night so my niece could seek emergency mental health support. Little did we know that night and the weeks that followed, our world was about to turn upside down. The girls who were 5 and 7 at the time, have now been with us nearly 2 years (24 months) and the story of our journey is a massive one and might be a blog of its own one day. DH and I are still in it together even though it has been incredibly hard and we sometimes battle through everyday.
Come March 2020 and my 40th birthday, I had an amazing month with my family having a reunion in Akaroa on the same weekend that I had a roller disco and was able to provide the girls with a fun time with their friends and mine, then have the opportunity to meet all my family in one spot for the first time in forever, including meeting my sweet 2nd cousins from Bali for the first time ever.
The following Monday came Covid lockdown #1. I was now a full time worker with my husband going into the battle zone (CDHB) most days, a home school teacher, grocery delivery person and trying to make sense of not being able to see my family for months on end. I think they were not only the hardest 7 weeks of our lives, its now seems so surreal... watching it unfold around the world. It was crazy.
During that time before winter set in we were getting outdoors a lot and really feel like pain was one of the things i was worrying about the least... that is until my tendonitis in my thumb started to get worse. You know i've always battled with De Quervain's tenosynovitis, carpal tunnel and other nerve issues, well this ended up being Trigger Thumb and yes another referral to a specialist. This time a hand surgeon. While waiting I attended a few appointments with a Hand Therapist and we started to talk about my tendonitis and chronic pain, taping, splinting all the things and he agreed the chronic side of my day-to-day pain was just something I would have to learn to live with and medicate and plan better for times I really need it, like gardening, lifting and cleaning.
I finally got to see the Hand & Wrist Surgeon in September 2021. Her consultation was very thorough. She was very quick to say "you have a very complex family history.. here I was thinking you would be a very quick 30 min Trigger Thumb, but it doesnt even trigger the right way, everything about you is complex". Yes, not a surprise to me, not even that the bone in my right thumb is larger than the other. Just add it to the list of right-sided anomalies. I was what she said next that threw me for a six... "has anyone every assessed you for a connective tissue disorder". I just about laughed. I told her that I was under many specialists that have never found links to my long list of ailments. She gave me a good look over and said "your appearance is very alike Marfans Syndrome and EDS (Ehlers-Danlos Syndrome), clearly you are hypermobile so you should look into that. I bet you can press your thumb to your wrist, bend your pinky 90 degrees and touch the floor without bending your knees? Ummm yes, among a few other weird and wonderful tricks I had performed as a child. It turns out my feet and hands are very hypermobile, hence my early-onset basal thumb arthritis which I have been able to sort splints out for. She prompted me to see a Rheumatologist for tissue biopsy and to see my fathers one if possible, if not I had a private option also. I was booked in for surgery 2 weeks after that, in the private hospital just incase due to my low blood pressure and complex nature.
I went home and google Marfans and EDS, these are both terms I had looked into before, having known a few people with the conditions, I went straight to the source to ask advice. My friend whos daughters both had EDS, straight away said "dont take this the wrong way but you do have the look about you". Then my google search began, which I knew I shouldnt do. DH and I printed out the criteria for a condition called Hypermobile Ehlers-Danlos Syndrome also known as hEDS (this is one of 14 subtypes, and the most common of the rare conditions and the only one without a gene to type)... before my husband could get back from the printer, he had read it, looked at me and said "omg this is you." I read through the criteria and it was then my stomach dropped... all these years, all these specialists... is this even real? I promply joined the FB group my friend was in and started asking questions. First one, where next for diagnosis? They suggested a lady who specialises here in Christchurch in these conditions and had recently opened her own Specialist Clinic. It turns out not many specialise in NZ due to it being a rare syndrome and our low population numbers.
My call to teh specialist physio was the best decision I ever made. I told her my story and its one she had obviously heard a thousand times before. Come on in as soon as we hit Level 2 (we were staging out of our second lockdown at this point)... and I did. Little did I know that it was just the beginning of a journey that would change everything.
It turns out I fit the criteria for hEDS like a glove. I got 5/9 on the Beighton Score and 8/12 on the Brighton Criteria. I dont have hypermobile knees or elbows but I do have hypermobility in my hands, feet, shoulders, neck and hips. She could only however give me a provisional diagnosis. I still had to meet with a Rheumatologist to confirm the diagnosis by ruling out that my symptoms and list of ailments werent being caused by an auto immune disorder. We tried public with a pretty sound referral letter from my GP, my specialist physio and my hand surgeon. They declined me instantly. I have since learnt from the EDS Society and through a lot of research that some countries do not have specialist clinics to diagnose and treat, so finding a medical professional here in NZ that believes in it, let alone specialise, is very hard. I went to a private Rheumatologist as suggested by her and managed to get an appt 2 weeks after I called.
The appointment with the Rheumatologist was very indepth, going through my family history once again. My list of 'what is wrong with me' I think surprised her, the journey I had been on thus far and that there was 3 rounds of IVF in there too! We finally got to the physical exam part after a bit of standing, bending measuring... there was not much discussion and just answered the 'is this tender' questions with, well yes, everywhere hurts all the time!
We sat back down and went to summarise the discussion and exam we just completed. She gave me a diagnosis of Fibromyalgia!
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.
OMG what? It was a bit surreal. I had been researching Fibromyalgia for many years as myself and my father believed it could co-exist with other disorders or diseases and we were right. Once I recovered from the initial shock, I asked what does that mean for the confirmation of the EDS diagnosis...? She said "well i agree with Anita, so today you get two for the price of one!". There was a tense moment when I asked how to explain the lack of familial links for these disorders and syndromes and she asked my why I wanted to know? I didnt have children so what did it matter? It turns out a paper is being written at the moment as I may end up being able to test for the hEDS defunct collagen gene at some point, but for now its possible I am what they call a spontaneous gene mutation. Typical!
I left the office for DH's office which happened to be next door to tell him how it went. Shocked still I tried to explain to his workmates i had just been diagnosed with a connective tissue and a central nervous system disorder and finally gone full circle to be prescribed Amitriptyline (a tricyclic). That is the one I had been I had been avoiding for some time.
So, what has been happening since? Well my specialist physio and I have talked more as there are co-morbitities that come with both conditions, I'm yet to find out if I do infact have two of the main ones, MCAS (Mast Cell Activation Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). I do fit the criteria for some of these, or dysautonomia in general, but definitely not on the severe side, now I can give my symptoms a name! I had heard of MCAS before as my gynecologist was the first to suggest it. I have since found that Tourettes tics and muscle spasm's are also part of the autonomic system dysfunction. Who knew? all this time?
Next was a visit to my GP to talk about the medicine before taking it. I asked why it was prescribed and not others, why a natural approach wouldnt work and we ended up coming to the same conclusion as the Rheumatologist and I had, im so fatigued and battling a sleep disorder caused by my chronic pain that I dont have the energy to exercise to meet my increased cardio requirements to get me fitter and doing better. So reluctantly I started the meds on 1.12.21. Its time to look at the over all picture, connect the dots and plan for the future.
What needs to be addressed from a care plan point of view will be my next blog post, as lots has been happening in the time i have been away.
Im parenting two traumatised children, working full time, studying and my father died this year in the most terrible way and I have a sick brother. Some how in all of that I remain calm, mostly collected and still manage to get things where they need to be, no matter the cost. Not only do I need to treat the body, but check on my mind... so im awaiting a reply for a psychological assessment as part of my future care plan. Hunted high and low and for a someone who specialises in Chronic Fatigue / Pain syndromes... so the journey is really only just beginning!
