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my quick answers to strangers’ questions :)

just wanted to share that I FINALLY figured out a short, not too personal way of answering questions from strangers. I wear a c-collar nearly 24/7, and sometimes use a mobility aid, so I get a lot of strangers asking me “what happened?”. Ive learned that the easiest way for me to answer that is to just say “oh, just faulty genetics.” I sort of laugh it off, and smile (I also use humor as a coping mechanism, but this just works so well… lol!). They aren’t entitled to any answer at all really, but I find this is often enough to end the conversation in a friendly way. Sometimes though (if I’m feeling up to it), it provides space to teach someone new about EDS, which can be really neat!

#EhlersDanlosSyndrome #HEDS #HypermobileTypeEDS #CCI #AAI #Mobilityaid #MightyTogether #StayStrong

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Ms. Bobblehead

My CCI has been freaking me out lately. My neck has been cracking a lot lately. I can feel my cervical vertebrae sliding in and out of place. If I massage the back of my neck I get a raging headache. I looked up to look at the stars the other night and got very dizzy and gave myself a headache. Last night, I tilted my head up to kiss my husband and had the same thing happen.

I wear my Aspen collar twice a day and when I'm a passenger. I wear my soft collar when I drive.

Is PT worth the time, expense and effort? My insurance is awesome so that isn't an issue at least.

I can't tell if I should be genuinely concerned or if I'm just panicking.

I really hope all of this makes sense. Thanks for reading. #HEDS #CCI

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Please reach out to me #CCI #Craniocervicalinstability

Have you been diagnosed with craniocervical instability? I was diagnosed yesterday and I'm so frightened of it all. If anyone has it or has had it I'd really appreciate if you share your experiences and opinions about it with me. It's always easier to cope with something when you know youre not alone. #CCI #Craniocervicalinstability #EDS #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #MyalgicEncephalomyelitis #ME #ChronicFatigueSyndromeampME #ConnectiveTissueDisorder #GeneticDisorders #Zebras #MedicalZebra #CervicalInstability


Surgeons for CCI/AAI? I’m just in the early stages of figuring this out—it’s the result of whiplash and probably some kind of #HSD . Suggestions?



what do you think about Botox with #HEDS?

I have been diagnosed with hypermobile EDS pending genetic testing to rule out the other types of EDS. I have had several concussions which have dramatically changed my life for the last year and 8 months. I suffer from daily constant headaches and migraines 4 or more days a week. Recently after an osteopathic neck adjustment I had a 40 day migraine and still haven't fully returned to baseline.

My new pain specialist is recommending Botox injections in the neck and head. In my research on EDS I have seen that it can make things worse if you have craniocervical instability to further de-stableize the c-spine by over relaxing the neck muscles. We did an in-motion x-ray of my c-spine to check for instability and it came back negative, but I still feel really strongly that there is instability. It cracks constantly, I push on my neck with one finger and the vertebrae slide and pop. I think I should get an upright MRI to check for instability with the internal structures causing a chiari-like headache due to CCI. Does anyone have experience with this diagnosis?

I know Botox is temporary no matter what, but the thought of making anything worse for a month or more is too much right now. I am considering doing just the cranial injections and not the neck. What do you all think? What has your experience been with #HypermobileTypeEDS and Botox for #Migraines #ChronicDailyHeadache #PostconcussionSyndrome and #CCI ?


Advice? EDS & CCI

In a bit I have a doctors appointment and am nervous as I always am before a doctors appointment, I’m sure most of us can relate! I’m going in to talk to my PCP about these wicked headaches that I get, and have been getting for years. I was diagnosed with EDS and then subsequently with CCI last year, following a cervical x-ray. I’m hoping that the visit this afternoon will result in a referral to neurology. Was wondering if any Mighty EDSers might have words of wisdom on getting through this process? I’m guessing if there is anything like Chiari or a CSF leak it would be hard to find and even harder to treat, so I am not expecting any kind of miraculous intervention. I’m just thinking it would be good to have more information about what might be going on, and to not feel that I’m trying to figure things out on my own. Any words of wisdom are much appreciated!

#EhlersDanlosSyndrome #CCI #ChronicIllnessEDS

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Cyclical Stages of Greif #ChronicIllness #RareDisease

To discover you have something rare, incurable and genetic, then to find your pain won't be believed and cannot be measured by any test- in fact your blood tests are normal, but there is nothing normal about your pain or symptoms that turn out to be comorbidities. You are told "its all in your head," "maybe you should think about coping" and no specialist will see you. You attend a support group, study everything else it could be and discover that what you have is multi-systemic. Compound the aggravating process for disability, the $7 you have left after you pay for your meds, an inability to do any kind of work you were once qualified for, rent and bills looming; no wonder you are grieving your life, unnaturally anxious and in pain- constant unending pain. After waking one day with no feelings in your arms and a burning rod of hell you call a spine, your pain has increased immeasuably AND you have a high pain tolerance! Now remember this is rare so not only will very few doctors know it, few will know how to diagnose let alone treat. Remember crying makes you a hysterical female, eat right (but you cant afford it) and Always Educate EVERYONE. #aintnobodygotenoughspoonsforthat #EhlersDanlosSyndrome #CCI #PosturalOrthostaticTachycardiaSyndrome #ChiariMalformation #RaynaudsPhenomenon #ChronicPain #Anxiety #JointHypermobilitySyndrome #MedicalZebra #Spoonies #EDSAwareness


How do you fight with no resources? #ChronicIllness #Poverty

I can't work- can't walk most of the time- can't think the other half of the time. I have no money- no insurance- no benefactor. Family is unsupportive. I'm new to the area and friends are in short supply. New friends I wouldn't burden with my pain. They are new and don't deserve to have this disaster thrown into their lives. I'm not their responsibility. I-Me-Alone am responsible. #EhlersDanlosSyndrome  #PosturalOrthostaticTachycardiaSyndrome #CCI #ChronicPain

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My Service Dog!

Meet Wednesday! She’s my service dog and is the sweetest little thing! Today we took her on a walk by the water which she absolutely loved! She even made a few friends haha! I’m so grateful for her! #ServiceAnimals #ServiceDog #ServiceDogsForChronicPain #CCI


Who diagnosed your CCI and MCAS?

I have Chiari Malformation, EDS, and POTS. Recently I’ve been told I need to get tested for Craniocervical Instability and Mast Cell Activation Syndrome based on my symptoms. I’m just not sure which types of doctors I need to go to to test for these things. I’m assuming maybe a neurologist and a geneticist? Any help would be greatly appreciated.

#EhlersDanlosSyndrome #ChiariMalformation #PosturalOrthostaticTachycardiaSyndrome #CCI #MCAS #ChronicIllness