Chiari Connection International

05/24/2026

05/22/2026

⛈Many patients report that their symptoms worsen with changes in weather. In conditions like syringomyelia, even subtle changes in pressure may influence symptom perception.

Patients may notice:
• Increased pain before storms
• Headaches or pressure sensations
• Fatigue or reduced tolerance for activity

Can I get a 🖐️ if you can relate?

Click here to read more on why this may happen to those with EDS and SM 🔗https://bobbyjonescsf.org/whatshappening/heat-weather-flares/

Read more on the proposed mechanisms in the LINK IN BIO

05/21/2026

Heat Intolerance and Autonomic Dysfunction 🔥🚨

Heat intolerance is common in people with syringomyelia, EDS, dysautonomia, or POTS. When the autonomic nervous system struggles to regulate heart rate, blood pressure, circulation, and body temperature, heat can trigger symptoms like rapid heart rate, dizziness, fatigue, increased pain, and brain fog. Heat-related blood vessel dilation may also reduce blood flow to the brain, worsening symptoms.

Check out Christie’s Survival Toolkit �https://bobbyjonescsf.org/apps/uploads/2026/04/BJCSF_Flare-Heat-Weather-Toolkit-Handout.pdf
Learn more and check out more resources: https://bobbyjonescsf.org/whatshappening/sm-awareness/

05/19/2026

Kinley~ you got this! Love to see your beautiful smile!

05/19/2026

wow!

05/16/2026

I love that these splints are clear! I am so ordering some for my thumbs that keep on subluxing and tearing ligaments.

The splint works very well. I bought it because I have Ehlers-Danlos Syndrome (EDS) and needed extra support for finger instability. Using it for mallet finger. Since you really need the splint on 24/7, I was looking for something that does not hinder my normal actions. I found that soap makes it loose and it will come off. I put one wrap of waterproof tape around it and it stays secure. I can wash myself and hair. I can type. I can do about anything as normal.

One thing, if you have big hands, they may not fit. Mine is on my middle finger and it is the largest splint of the kit. I am 5'9" and 185 lbs. I tried a metal splint from CVS. It kept coming off and because of the metal tip I could not type. And the foam was going to get rancid. I recommend this.

As it turns out, not all waterproof tape is the same. The Johnson & Johnson first aid waterproof tape lasted for days on my finger. I tried some Equate tape, and it came loose the first time I washed my hands with soap. So I recommend using Johnson & Johnson.

I wore this for nine weeks and it proved its durability. My finger healed straight. Helpful support for people living with EDS who need extra finger stability.