My EDS Careteam
Ehlers-Danlos Syndrome type hypermobility (or hEDS) presents many issues outside the party-trick-worthy bendable joints. This means that beyond my killer Mrs Incredible impression, I have complications above and beyond my joints. hEDS seems to affect my entire body, and each system is affected differently. This means I spend a lot of time and money at the doctor.
I'm very lucky to have excellent insurance and a great care team at Vanderbilt University. My care team consists of:
- A intern from internal medicine that changes every few years.
- A nurse practitioner that specializes in pain conditions at Osher for Integrated Health.
- A physical therapist at Osher for Integrated Health that I see for several sessions at least once a year, and for 6 months when I was first diagnosed. She taught me to walk without overextending and gave me exercises that truly help day to day.
- A massage therapist at Osher for Integrated Health. Massages help my myofascial pain and injured or subluxated joints and keep me functioning without painkillers.
- An acupuncturist at Osher for Integrated Health. I thought this would be BS, but he has given me my appetite back on several occasions.
- A wonderful Gastroenterologist in the Vanderbilt GI clinic who tries to solve the mysteries of my messed up tummy.
- A GI Psychiatrist to help me manage my GI issues mentally while we try to hunt down causes and solutions for my tummy.
- My third Neurologist at Vanderbilt -- why do they keep moving away? -- to help manage my multiple migraine diagnosis.
- The Allergy clinic at Vanderbilt to handle my list of allergies.
- My ENT for my occasional bout of positional vertigo [BBPV].
- Midwives at Vanderbilt for my Gynecological needs.
- All of the wonderful testing clinics that have helped my doctors and myself find the diagnosis and solutions by running batteries of test in the last few years.
Why so many doctors? This takes a little history…
My first diagnosis was vestibular migraines, BBPV, and normal migraines. Vestibular migraines and BBPV both cause dizziness to the point I do not have the balance to walk.
I cannot take most preventative migraine medication because of their shingles side effects (I had shingles at 17), so I have emergency medications only. When BBPV hits I have to wait for relief with an adjustment from my ENT, so I am sometimes dizzy for long periods of time. My first episode lasted months. It was awful.
After my migraines were diagnosed I was talking to a nurse friend whose daughter has fibromyalgia and she was the first person to ever say that my pain levels weren't normal. Let's be clear...my pain levels have increased slowly over the years, but I don't remember not hurting in some way. She convinced me to see a doctor.
The intern I had that year at Integrated Medicine diagnosed me with Fibromyalgia. Many of the medicines to treat fibromyalgia are the same as the migraine medicines, meaning I cannot take them because of shingles. I also prefer not to take opioids, limiting what can be done for my pain. This was when I heard about Osher for Integrated Medicine at Vanderbilt and got a referral. I am not shy about saying this: Osher saved my quality of life. I highly recommend it for anyone with pain.
Osher got me into PT and group therapy classes as soon as possible. Physical Therapy diagnosed me with EDS type hypermobility with the Brighton Scale and then started teaching me how my body should be treated. I learned to walk correctly and was given exercises to strengthen muscles around my weakest joints. We worked toward simple goals: being able to drive short distances without pain, being able to clean my floors and still function tomorrow, etc.
My group therapy classes taught me to use mindfulness not only to help control my stress and pain, but to be aware of my joints so I don't injure them without realizing it. They helped me learn that some goals in my life wouldn't be possible with my conditions and that's okay. They showed me it was okay to mourn those goals. They showed me that it's okay if I have days where I'm not as 'me’ as I want to be, can't perform, can't get out of bed, or even that my brain slows down and I forget words. That's all okay; it doesn't reflect on who I am as a person.
Osher came to the realization that EDS was my main diagnosis, with Fibromyalgia being comorbid and caused by repeated joint injuries my entire life. That first year after the diagnosis was spent getting my pain levels under control and my migraines lessened. Once those life improvements were made I brought up my stomach issues during my regular check-in with the Nurse Practitioner at Osher. She referred me to a GI specialist and gave me several helpful supplements to try while we waited for the referral. EDS is known to have related GI problems.
The following section is about GI issues and might make people with weaker stomachs sick. Skip GI Issues
I started throwing up regularly at about 17. From my senior year of high school/first year of college I went from 130 pounds down to around 100 where I hovered for the next decade. I went to multiple doctors who would test my thyroid who would then tell me I was bulimic and it was all in my head. No one listened and no one believed me.. I’d had years since where I would improve and not puke more than normal people for a year or two in a row. In 2011, I got up to 150 pounds, the heaviest I have ever been and maintained between 140-145 since then. In the last few years my GI issues have ramped up, more than ever. I’ve dropped below 140 pounds and still seem to be melting. New GI issues are causing additional issues, more than I’ve ever had before. While I no longer vomit daily, I do have episodes about once a month that last for 4-6 hours each. It pretty much means I puke until I’m empty then continue to puke air and stomach acid until I pass out, or go to the ER. I recently got suppository phenergan in the hopes it helps these episodes stop earlier, if that gives you any idea of the level of desperation. If you are familiar with anti-nausea meds, I puke through Zolfran or whatever that name is.
Last year was my first time at the GI doctor. I had an upper GI, a radioactive egg test (I don’t know the name, I ate an egg and they watched it go through my gut), and an H-Pylori test. I had a second round of H-Pylori treatment (I had the first several years ago, but it didn’t work - they are horrid treatments). They found I had ulcers and a hernia, which explained the constant stomach pain I live with. This year my symptoms have changed as I stated above so I have a new list of orders scheduled to try to find relief for my GI.
Along with the puking I rotate between regular bowel movements, diarrhea and constipation. What I’m saying is my life is a lot of fun when it comes to food. This year we cut out soy (which is nearly impossible) and it helped immensely, but made finding food that I can eat a challenge.
End GI Issues
The other big symptom or comorbid we’re trying to identify or treat is temperature control. I cannot keep myself warm in any normal occasion. My extremities are almost never warm; I wear compression gloves and thick socks and it only helps somewhat. When I’m in an episode like mentioned above I rotate between way too hot to freezing to death and shivering in seconds. Poor Daniel keeps heating pads and blankets on standby so he can help.
Why am I sharing this? Because through this process I have found great comfort in other EDS bloggers. I’ve been able to identify things I thought were normal as symptoms* that are important to share with my doctors. I’ve realized that I’m not alone in the symptoms I have or the treatment I had from the medical profession before I got so lucky with Vanderbilt and Osher. I want to share my journey as best I can so maybe others can find comfort or hints at relief.
*Sometimes my throat hurts ‘funny’ and I look like I have an adam's apple, that’s my throat subluxing. My ribs pop out of place on the regular, I thought it was an undiagnosed break for years, turns out, nope they just dislocate and sublux on the regular.