Anyone know anything about straightening of cervical lordosis just got a CTA report back but don't go to my drs till the end of the month i need information to keep my brain happy #EhlersDanlosSyndrome #Hypermobility
1 reaction I'm actually at the point where I'm considering lyrica. For years I've tried to avoid it but I'm so ouchy sore to the touch and tender that I'm not sure what else to do. I finally caved in and got hip injections, had to in order to see about a possible hip surgery. Having hip and low back pain since I was a kid concerns me for the future yet I'm hopeful. This is truly not how I saw my life at 30 yet somehow always knew they would be some physical discomfort to work threw. I feel if I can at least get the inflammation down I can sustain and maintain with the Fibromyalgia symptoms and the lax joints. This is truly a trying time however I'm grateful the weather is getting warmer as it helps ease some of the tension. My goal has always been to get it into remission which I hear is possible.
What are your experiences with lyrica or prolotherapy??
#Fibromyalgia #Neuropathy #ChronicPain #ChronicFatigue #nervepain #nervepainrelief #CervicalInstability
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Hi my name is Bri. I’m new to The Mighty and look forward to sharing my story. I also hope to meet other people who have the same conditions I do. #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #MastCellActivationDisorder #Gastroparesis #CervicalInstability
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"Whats wrong?"
"I'm just frustrated because my body really hurts and I'm upset they (the physical therapist) messed up my orthotics"
"Oh trust I get it!"
I cant help but think, do you!?
When you can still drive.
Aren't having trouble walking or doing house work.
How do you get it?
I know beneath that, I'm really upset because people say they get what I'm experiencing and want to help get dont follow through. Better yet watching me struggle to do physical things and yet leaving all the physical work to me....
So I ask do you really "GET IT". #Fibromyalgia #Neuropathy #ChronicPain #ChronicFatigue #CervicalInstability
It’s been a long road but I finally received my official hEDS diagnosis along with a few other surprises and more news to come once testing comes back. But I thought who better to share the news with than with all of you? 🙂
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
Some days are worse than others. Some days are easier to cope. It’s hard to be in agony when you’re surrounded by a world that stigmatizes chronic pain and pictures it a specific way. I’m here, I’m standing, and yet my bones are slipping. My head is splitting and my insides are killing. I think our invisible illnesses are not invisible for our sake but for the sake of others... I wish people asked more questions and acknowledged our pain. Unfortunately, the world doesn’t always see it and a lot of my doctors don’t understand it. To be our own advocates are just as exhausting as our illnesses. Just sitting here and hoping for a better day. #exhausted
My wife and I made an Instagram account to show how medical marijuana has helped us in our journey. if that’s something you’d be interested in seeing please follow us we’ll be posting daily ☺️ and if you have a medical account or know of good ones to follow drop them below 👇🏽 #Instagram #ChronicPain #BipolarDisorder #BorderlinePersonalityDisorder #Fibromyalgia #Autism #Spoonie #EDSAwareness #EhlersDanlosSyndrome #CerebrospinalFluidLeak #CervicalInstability
When patients walk in for their first appointment with their psychiatrist, they are startled to find that the chick in the wheelchair and neck brace is their nurse. And everyone thinks I had a car accident.
“Oh, no,” I tell them, smiling, “my connective tissue is just wonky and makes my spine and skull unstable. The brace keeps blood flow going to my brain.”
They don’t know the soul-crushing fatigue. They don’t know the nausea, the pain prior to the brace, the lightheadedness, and the feelings that I might faint. They don’t know that there are many days that I get into work and I don’t want to be there. That I would so much rather hide in my room and never come out again. They don’t know that there are many mornings that I wonder how I’m going to get through this day, that I cry and wonder how much longer I can continue doing this job I love. That I wonder who I will be when I no longer can do it. They don’t know how helpless I feel to do anything about it.
“How are you?” coworkers ask.
“I’m vertical,” I tell them. Because sometimes that alone seems too much to ask from my body,
I try to smile and I try to fight through. Most days, I succeed, even if I end up feeling drained by the end of the day and by the weekend.
But I can tell my patients that I understand their battles with FMLA; that I’ve been there. That it’s okay to struggle daily with a chronic condition that medicines might help but won’t cure. That there can be ways to make the world work for our unique needs.
When I tell them, I hope they can take strength from the words. That they can’t see the cracks in my own armor; can’t see my own fears, insecurities, and physical struggles.
I’m often not okay. But I’m vertical. That’s a step in the right direction. #CervicalInstability #MCAS #Stillvertical #Alantoaxialinstability #MedicalZebra #Craniocervicalinstability #Walkingwheelchairuser #LivingWithPOTS #HypermobileTypeEDS
I have had so many doctors appointments this past year and after being on chemotherapy for 3 months for a non existent autoimmune disease i am finally off of it and my rheumatologist said that now that he ruled out all the “normal “ things with the chemo he is certain that i have ehlers danlos syndrome along with cranio Cervical instability. He referred me to a geneticist an eds specialist, cardiologist, and neurologist and also ordered flexion extension xrays. My neck has been such a huge problem and i am really scared now if we will finally find answers with that because my imaging never seems to show anything. But i am so thankful that after six years of so much pain i feel like i am so close to getting the answers that i have been looking for!
#EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #CervicalInstability #Gastroparesis
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