Saturday, January 30, 2016

2015 Wrap-Up

2015 was a year of searching for answers and making changes.  I'm going to attempt to summarize my experiences as it has been a very long year of emotional and physical ups and downs and injuries.

At the start of the year, I was experiencing chronic fatigue, widespread pain, and migraines 2-3 times a week.  Xan and I attributed it to the stress of my previous job and we were both hopeful that my new job would help.

When I wasn't feeling better by Spring and medical appointments in the past had been fruitless, I began searching Alternative Medicine and Natural approaches to see if they had any answers.  To summarize Summer and Fall experimentation: Massage Therapy and Physical Therapy have been amazing and I currently cannot function without both!  Chiropractic care and Nutritional Counseling were not successful for me but I learned a lot from the experiences. Fall was spent Gluten, Dairy, Soy and Oat free with no improvement.  But, now I know for sure I can eat those things with no problems :)  In fact, Dairy makes my muscles feel better and acts as an anti-depressant. 

In September, my peroneal Tendon in my right ankle popped and kept repopping (chronic condition in both my ankles since High School).  I was sent to Physical Therapy for both TJMD and ankle rehabilitation.  After wearing the boot for a couple of months, the Iliotibial Band on my left hip snapped and my left Patella began to sublux, particularly when going up stairs or putting in the clutch while changing gears.  



My PT is has been amazing and I am so lucky to have been matched up with someone who has experience working with hypermobility issues.!  During my first evaluation with her, she pinpointed the source of life long pain and problems: Joint Hypermobility Syndrome.  I scored an 8/9 on the Beighton Scale, and have chronic pain and subluxations in multiple joints.  



I have an appointment in April 2016 to see a Geneticist to determine if I have Ehlers-Danlos Syndrome Type III: Hypermoblity. Quote from link: 

Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees) and small (fingers, toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella and temporomandibular joint dislocate frequently. The skin involvement (smooth velvety skin with or without hyperextensibility) as well as bruising tendencies in the Hypermobility Type are present but quite variable in severity.
Chronic pain is a well-established and cardinal manifestation of Hypermobility EDS and it is common for pain to be out of proportion to physical and radiological findings. The origin of the pain is not clearly understood, but some of the likely causes include muscle spasm (tender points are sometimes present) and degenerative arthritis; neuropathic pain is also common.
To date, there is no distinctive biochemical collagen finding identified for the majority of Hypermobility cases. The Hypermobility Type of EDS is inherited in an autosomal dominant manner.





In November, I got some interesting news: I have Lyme Disease.  That was a surprise and I am so thankful the doctor added it to the blood work order on a whim.  She said the strand they found was consistent with early stages and I couldn't have had it for more than a month or two.  The 3 weeks of antibiotics was not fun but finished.  My doctor and I have no idea if I have continuing symptoms or how this will affect me in the future.  Lyme complicates EDS so it is possible this subject will be revisited in the future.  For now, I have no idea.



My doctor is also looking into getting me a chest strap heart rate monitor to look further into the possibility I have POTS.

Doctor visits have become very interesting.  Hypermobility, EDS, POTS, and Lyme are all things most primary doctors have only heard of and briefly studied.  My primary is currently treating me by me telling her what I need tested and treated.  She has been wonderful and blessedly honest in what she does and does not know.  AND, more importantly, she BELIEVES me!

Overall, Things are messy and a bit in limbo.  I currently wear up to 5 braces anytime I leave my house and occasionally even at home: one for each ankle, one for each knee, and one for my right wrist.  Those are the ones where either the bones or the tendons are popping daily to weekly.  

All my current diagnoses fall under the description of an Invisible Illness: Joint Hypermobility, Lyme, and unexplained Infertility.  That means, how I look does not always match how I am.  

"How are you?"  Well... um...long answer: my ankle is still the same.  I'm not allowed to wear my boot anymore because it is causing hip instability.  And, my other ankle has joined in the fun.  I'm actually wearing two ankle braces that are hidden under these leg warmers.  And I've developed symptoms of Snapping Hip Syndrome in both hips that cause loud enough pops that an entire room will hear, and I really don't know what is wrong with my wrist but don't have a doctor qualified to figure that out yet. That brace is hidden under my finger less gloves. Hopefully, I won't be getting a matching brace on the other wrist but it's starting to get more snap, crackle, pop, and pain in it so it might just be wishful thinking.  Short answer: Okay
After attempting to finish off this post for the past 3 hours, I will end with a couple of memes.















2 comments:

  1. Thanks for sharing Ashley! Good luck and much progress is my wish for you in the new year. I hope you find the people/doctors that can help you find the help and information best!

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  2. I'm so sorry you've been going through all of this. I'm so glad you have a doctor who respects you-it makes such a difference. Here's to a 2016 with more answers and less pain.

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