EDS Rehabilitation: Day One Of Forever

Today I had my first appointment with the EDS specialized Physical Therapist. It surpassed my expectations by far!!! This was the most pleasant medical experience I have ever had in Finland. I had a 2.5 hour session with a very knowledgable, kind, and understanding person who assessed me as a whole.  She supported me physically, mentally, and emotionally. Our visit actually ended with a hug. Which was really surprising and reassuring about the future. This is the first time since my diagnosis I haven't felt utterly helpless. Let's hope this positivity continues. The mental struggle is half the battle, right?

Before I go any further, I want to give a VERY brief explanation about the healthcare system in Finland. It's a little confusing. Here goes nothing.

Healthcare in Finland:

Currently, I have two therapists who are both specialized in certain areas. My Orthodontist referred me to my current therapist (Liisa). She is specialized in the the following areas: mouth, jaw, TM joint, c-spine, and shoulders.  I see her once a week. I can see her as long as I am undergoing treatment for my jaw/face at the surgical hospital (and afterwards to manage my symptoms). The Physiatrist (specialized Doctor) referred me to the second PT. This is the therapist I saw today (Tiina). She has experience with Ehlers-Danlos and other movement disorders. I can only see her a maximum of five times- unfortunately. Together we will make an action plan and she will be available in the future-if needed. Both of my therapists are a part of the University Healthcare System in Finland. This means they are just below the private healthcare system (which you only have access to through private insurance or work. My partner for example, has access to this through employment. However, her access does not provide me with access. Also, because I have a pre-existing condition I do not have the right to purchase private insurance-complicated I know). Just below the University Health is the public healthcare system. When you have a specialized illness or a unique situation- you are able to move into the University system. Otherwise, everyone who does not have private insurance must go to public health.

Maybe that made sense? Hopefully.


Amie's Health Plan 

So we made a list of things that must happen for my treatment which are as follows:
-Hydrotherapy treatment (pool therapy that will start next week)
-Magnesium and Potassium supplements
-Referral to the orthopedist to make a customized neck brace and shoe insoles.
-Cardiologist to check my mitral valve and aorta.
-Referral to the sleep clinic to check for sleep apnea.
-Referral to the Urologist for bladder problems caused by EDS.
-Referral to gastroenterologist to assess my stomach issues caused by EDS.
-Massage therapy
-Acupuncture ( next time)
-Meditation/stress management
-Joining a local support group/disability service (not sure if this is supported in English. I plan to find out).
-Awareness of my limitations (resting, not over-doing it etc).
-Reality check ( No lifting weights, no running, no repetitive exercises etc). This is a very hard one.
-Healthy lifestyle choices (no drinking, eating healthy, sleep hygiene).
-Begin my medication for neuropathic pain.
-Order and start wearing compression clothing beneath my clothes.

Currently my feet are taped (which feels crazy).  I didn't realize that my ligaments and joints were causing me to walk "off balance"without distributing my weight evenly. This explains a lot. I even got to see my feet from a specialized mirror so I could see the weight distribution.


I'm looking forward to starting treatment and I'm highly optimistic that I can manage my illness through some combination of these methods. Fingers crossed. I will update things as they continue to arise! :)

Thanks for taking the time to read my blog! I appreciate your support. <3