#undiagnosed
Jennifer Brea’s Amazing ME/CFS Recovering Story: the Spinal Series - Pt. II - Health Rising
https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/
“There’s no doubt this is not the easy way out for ME/CFS. If I could choose a way to recover – which I obviously can’t – neurosurgery would be one of the last options on my list. I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. That procedure sounds about as spine-tinglingly scary as anything I can imagine. (Brain surgery would probably be worse.) The fact that only four neurosurgeons in the world can be trusted to do this procedure doesn’t help.
Among the first thoughts I had upon learning of Jen’s recovery was that if this is what it takes – a rare diagnosis and neurosurgery – if that’s what it really takes to recover, I don’t know that that’s ever going to happen.
After some reflection, I don’t think it’s as bad as that. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. While getting a diagnosis isn’t a piece of cake, it can and is being done.”
“Jeff and Jen’s stories do bring a new focus to the spine and brainstem. Hip, on the Phoenix Rising Forums, pointed to five structural conditions which can cause brain stem or spinal cord compression – and ME/CFS-like symptoms:
cervical spinal stenosis — spinal canal becomes too narrow, which can put pressure on the nerves
syringomyelia — fluid-filled cyst in the spinal cord which compresses the spinal nerves
Chiari malformation — where brain tissue is pushed into the spinal canal due to a skull which is too small
tethered cord — where spinal cord is “stuck” to a structure within the spine such as scar tissue
craniocervical instability — instability of head & neck bones compressing the brain stem or upper spinal cord.
Other spinal conditions that could cause or contribute to ME/CFS/FM/POTS include cerebral spinal fluid leaks and intracranial hypertension.
Even if you don’t have CCI/AAI, the search for it may help uncover other problems. One person on the Phoenix Rising forums reported that she didn’t have CCI but that the search for it turned up “severe stenosis, edema, compression fractures, and other issues causing my spinal cord to be affected” and that treatments for those conditions were helping.”
“For me, the recovery stories provide hope and are a sign not to give up, to stay curious, to keep reading and asking questions. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. What was cloudy yesterday may become clear today. It wasn’t that long ago that CCI/AAI surgery wasn’t even considered for Ehlers Danlos Syndrome – it was the province solely of whiplash and trauma patients.
We should also remember how vitally important sharing our stories – both our ME/CFS stories and our recovery stories is. Jeff’s publication of his story may have saved Jen’s life. It’s now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries. Please share your improvement or recovery story.
Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through.”
“Don’t you think the doctors are probably fed up of seeing you so often?”
[ID: gif of a middle aged man holding a mug saying “They may resent me. I don’t care.”]
Doctor: I’ll refer you but he’ll probably not do anything to help ease your symptoms
Me:
[ID: gif of Sandwell Tarly saying ‘he can bloody well try.”]
Doctor: it’s probably just growing pains
Me, a 21 year old, who stopped growing 7 years ago:
[ID: Gif of a teenage boy who is angry saying “this is bullshit!”]
Was anyone told “only boring people get bored” as a kid?
No I’m not boring I am Autistic I lose focus easily, also a l psychologist who I use to work with suspected ADHD, but I never got diagnosed. You might want to chose your words more carefully before using certain quotes.
#Repost @health_and_unwellness
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#differentaidsfordifferentdays graphoc by @wheely_good_time I love this hastag, created by @thedisabledhippie - it shows how our illness fluctuates from day to day, and even hour to hour. In a normal day I need my wheelchair, forearm crutches, and can walk without help (with my braces). Its always hard to explain to people that you can walk but still need a wheelchair sometimes. Even doctors dont understand. When I asked my specialist (who confirmed the connective tissue disorder this monday) for a disabled parking spot, he gave me an unhelpful and unprofessional lecture about how I cant call myself disabled. Well, I am disabled. Fuck that.
#hypermobilejoints #hypermobile #hyperextended #hypermobileehlersdanlossyndrome #ehlersdanlossyndrome #hypermobilespectrumdisorder #jointhypermobilitysyndrome #jointpain #jointinstability #issueswithmytissues #forearmcrutches #differentaidsfordifferentdays #disabled #wheelchair #undiagnosed #medicalmystery #medicallycomplex #painwarrior #spooniecommunity #painmanagement #mobilityaid #mobilityimpairment #impairedmobility #spooniestrong #sicknotweak #fibrofighter #fibromialgia #fulltimepatient
https://www.instagram.com/p/B4qJveWpX2b/?igshid=1xn7ffz289ln9
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My entire life has been defined by sicknesses without names. Incredibly serious illness that knocked me out for weeks? Unnamed “Virus.” Nausea that had me carrying around a bucket for a literal year (thank heaven I was homeschooled)? Growing pains. I’ve just grown to accept that no matter how serious whatever I have is, I’ll never have the comfort of an impressive name I can rattle off. It sounds so stupid when I put it like that, so petty, but I’m so used to minimizing and delegitimizing.
I feel sorry for people that aren’t in fandoms. Just what do you do with your life when you’re not crying over a fictional character or someone who’ll never know you. When you’re not drowning yourself in fandom content as a coping mechanism. Like you life just be boring then or?
