Hello from North of 49 & thank you for adding me.
A lifetime of bacterial & viral illnesses, over prescription of antibiotics from birth onward, serious accidents, a broken back, surgeries, 11 mild to major concussions, mental, emotional & physical abuse & here I am today ... living with the 24/7 day to day challenges of injury effects as well as a lot of complex chronic illnesses.
In 1986 I had trips to Hawaii, different places in California & a day trip across the border into Tijuana, plus being in Vancouver during Expo 1986 with thousands of people from around the world.
My personal & work life were filled with extreme stress.
Autumn 1986 brought what appeared to be cold, then some type of flu virus ... leaving me feeling unwell with declining energy ... but pushing through a busy life whilst feeling worse daily.
First week of January 1987 in emergency gasping for breath ... they did the mask, gown & gloves routine before examining me & admitting me to hospital although they could not identify which bacteria or viruses were attacking me.
After trying many different antibiotics & antivirals ... something finally slowed it down.
Glad to eventually go home even with 4 months more of medications ... a trip from bedroom to bathroom required a rest stop in the living room & after a year, I managed to very slowly walk one block.
An infectious disease specialist described my now non-existent immune system as similar to that of a person with AIDS.
I've failed GET as I couldn't even do 15 seconds on an exercise bike daily, participated in CBT & learned some useful things ... clearly trying GET & CBT have not been the "miraculous" cure for me that some doctors believe in.
At times I've been a 0, 5, 10, 15 & 20 ... most often 15 ... a few times there have been brief mini remissions & I was overjoyed when I had short spells of time a few numbers higher than that ... feeling better with less severe symptoms & improved functioning.
Followed every single time by a crash & worse relapse, lasting longer than the previous ones.
So many years of all over heavy duty neuropathic pain that can leave me in tears, non refreshing sleep in short increments, head to toe weakness & sometimes being unable to lift my arms, walk, chew or speak, costochondritis, plus body wide muscle spasms than can distort my limbs, spastic walking, seizures, neurological deficits, eyesight issues & all the other things I'm unable recall at this moment in time ... individual symptoms come & go or some appear together only to change 5 minutes later ... a never ending, never knowing daily & nightly harsh surprise.
This week brought the ambulance to take me to emergency with what presented as a possible heart attack & after being monitored as well as having a CT scan with contrast dye to rule out blood clots ... I was sent home by a doctor who had no working knowledge of ME or FM stating it is likely musculoskeletal & to take Tylenol or Advil.
After explaining those have had no effect since the 1980's, i was told "well then don't take anything."
I've done relaxation breathing, prayer & meditation, progressive relaxation exercises, daily stretches, flexing & movements as my condition allows.
Many strengths, formulations & combinations of Morphine, Oxycontin, Oxycodone, Butrans patches, specially compounded Ketamine spray, Cesamet & a host of other medications help for a bit but have not had any long term effect.
After watching Dr. Sanjay Gupta's excellent documentaries, Weed, Weed 2 & Weed 3 ... my next step is a trial of organically grown medical marijuana with the hope it can take the edge off the constant pain, ease the spasms & help with sleep ... which I will welcome & be grateful for.
My plan is a combination of water processed oil (instead of solvent processed) as well as edibles to do a comparison ... I may consider vaporization down the road but do not want to damage my lungs by smoking it.
Four general practitioners in a row refuse to sign the papers so I'm hoping number 5 will be the one!