All. I put this out to the board at large...but I wish I had saved it in an editor so I could post it directly here.
A LOT of us Zebras develop disautonimia (I did)
And disautonimia can mimic just about everything.
I can only give a link to the post.
I highly recommend you get the book
The Disautonimia Project
My hEDS dr recommend it and it is better than the website.
Ok I totally believe in Fibromyalgia. Its real and can be really hard to live with.
I may have been misdiagnosed with it because I definitely have two disorders that doctors are barely aware of (kinda like Fibro was 10 years ago).
I May even have FM on top of everything but almost all of the symptoms overlap so I just wanted to nention the disorders to you so you can make sure you dint also have them ir havent been misdiagnosed
Things like exaustion, fibro fog, tender points, pretty much all of it.
There are some different treatments and also different things you need to to keep things from worsening.
Again. I totally believe that Fibro is real and legitimate. My hEDS doctor was just talking with me about how a lot of hEDS and Dysautonomia cases get misclassified....so i wanted to share that.
For those of you with ehler-danlos....Disautonomia often develops in a really high percentage of Zebra's (people with eds).
It us worth familiarizing your self with.
Dr Spanos is an experienced practitioner and has started writing articles for patients. Non EDS specialists & EDS spectalists
alanspanosmd.com/articles
hEDS (ehler-danlos hypermobile)
www.chronicpainpartners.com/diagnosing-eds
Disautonomia aka Autonomic Neuropathy
Best
thedisautonomiaproject.org
They also have a book that is even better. My eds dr had me get it
The Disautonomia Project guide for patients and physicians
Decent
dinet.org
If you do think you may have these conditions...
Under Community Resources
The ehlers-danlos society has links to eds aware medical professionals and also online support groups in your area are a great source fir finding EDS doctors and EDS aware practitioners in your are (some drs dont know to register with the society so are not in the physician guide).
I found my eds and disautonomia drs and PTs and pain specialists by going through local support groups.
#Fibromyalgia
#ChronicPain
#EhlersDanlosSyndrome
#disautonomia
#AutonomicNeuropathy
My whole body is tight and shakibg and shivering.
Woke me up. Can barely type. I need to go take a klonapin & a muscle relaxer.. . and maybe some rescue hydrocortisone b4 this turns into an Adrenal Crisis.
Been awhile since Ive ht ad one.
My sleep has been worse than usual because of all the political stuff plus i had a steroid injection in my shoulder.
I can usually only sllep 45 -90 min @ a time due to Narcolepsy & a brain injury.
We get together with immediate family (parents, husband, brother, sil & my super cute 5 yo neice and the new baby).
We do this Sat & Sun.
Mom asked for us to start anternating weekends to cook (i used to LOVE cooking but really havent in about 10 years).
Anyway yesterday was my turn. (Only once a month).
I made something easy. I started slicing and dicing in spurts over a 2 day period & i did online grocery delivery from Amazon fresh.
I still had troubl with sleep but managed 7 hrs of 12 in bed.
I just got up and feel like i have the worst flu ever (i dont this is just my new norm..but its the best other can relate to).
I have hEDS (ehler-danlos hyper mobility) and it attendant GI and disautonomia (hEDS feels a lot like Fibromyalgia & dysautonomia is a disregulated autonomic system where anything your CNS controls can go hawire). Was misdiagnosed with fibro and CFS/ME for awhile as tjose can mimic what i have...infact i could still have them..)
I just took a breakthrough narcotic (on top of my standard dose).
Now i have to get a shower & do my hair (which has actually been a creative project for me...my 1 non-imaginary hobby other than reading).
Time to take nausea meds & pull out the tall directors chair I use when standing is just too much.
I also haven't been wearingvmy quell device (it is kind of a super TENS minus the contractions that go around calf & helps block pain signals from nerves all over...FDA just made them retract that claim after 4 yrs on market & they can only claim knee but I -and many others- really did get all over benefit from it. I was able to not go up on narcotics and my BTP med usage dropped as did my avg daily pain. They gave a 60 trial with a guarantee it would work withing 30 days. Ceffaly /Cephaly? is like tgat for migrains and Trigeminal pain. I would totally try is if my 20 migrains hadn't converted to migraine w/o headach, TG.
Anyway. My husband has asked that i stop complaining about whatever is going on with me so i really dont have a friendly ear. When he complains to me about pulling his back doing whatever I kinda just want to flip him off these days but dont want the spoons & trnsion that will cause. It really sucks.
So drinking some non cafinated tea & waiting for nausea and pain meds to kick in.
I dont produce enough antibodies either CVID immune deficiency, so in the days of COVID waking up like this is extra scare cause COVID + me = bad outcome.
Just needed a place that would undrrstand. Did a lot of support boards (moderated one pre tBI) on Narcolepsy & it helped & helping people helped so I'm trying again with this spooniy board.
Feel free to as ?'s about stuff in profile or comment
Thanks for the ear
ImaJenn
#Ehlers -danlos #disautonomia #ImmuneDeficiency
#Pain condition #Baddays
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