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Anyone here with Restless Leg Syndrome or Ehlers-Danlos Syndrome?

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Old 04-26-2015, 07:28 PM   #1
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Default Anyone here with Restless Leg Syndrome or Ehlers-Danlos Syndrome?

Hello everyone. I was diagnosed with Ehlers-Danlos Syndrome (EDS) and Restless Leg Syndrome (RLS) March 30, 2015. I'm really not sure which is causing the most problems. I have soooo much trouble sleeping, but I feel that it is due to the pain I am in from the EDS and not from Restless Leg Syndrome (which is what my doctor thinks). I have been taking Requip for the RLS for about a month now, and I have noticed no difference at all. I am so exhausted and in so much pain throughout the day that exercise seems impossible. On top of all of this, I have Hashimoto's Autoimmune disease and had my thyroid removed April 2013.

Does anyone else have either of these diagnoses? Have you found anything that helps you to feel "normal" again? I have already been instructed by my doctor to wear braces on both wrists, both knees, and both ankles to prevent further injury to my extremely hypermobile joints.

Thanks in advance for any suggestions!!!!

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Old 04-30-2015, 12:07 AM   #2
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I'm not familiar with those disorders but sounds like so much struggle. Since you already been advised by your doctor what to do, I believe you better follow that. Don't give up and never lose hope!
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Old 04-30-2015, 09:42 PM   #3
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Thanks! It's definitely been overwhelming, but at the same time a relief. I've gone a long time with doctors being baffled and just telling me, "I'm not sure what's causing your problems. Just take Ibuprofen, Tylenol, and an antidepressant." Now I have a name to put with the issues and have been trying to learn everything I can so that I can explain it to my other doctors (who know absolutely nothing about Ehlers-Danlos Syndrome because they think it's extremely rare).

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Old 05-16-2015, 07:07 PM   #4
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I have EDS.

"Giving up because of one setback is like slashing your other 3 tires because you got a flat."
"If you don't sacrifice for what you want, what you want becomes the sacrifice"
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Old 06-08-2015, 09:03 AM   #5
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Default Restless leg

I have restless leg along with sleep apnea. I would kick in the night to wake myself up so I would start breathing again. I take pramipexole 0.5mg (meripex) sp? for the restless leg and clonazepam0.5mg to help me sleep through the night.
I never heard of Ehlers-Danios Syndrome. Since you mention how tired you are, have you ever been tested for sleep apnea? This is a condition where you have episodes of stopping breathing while asleep (you aren't even aware of this) but it keeps you from getting the deep sleep you need to feel rested. I use a cpap machine which is a machine that puts air in your throat through a mask you wear to keep your throat open so it doesn't close up and allow you to stop breathing. It might be something to ask your doctor about...Just thought I would share this with you, hope it might be helpful....
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Old 07-15-2015, 11:39 AM   #6
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RLS here - although luckily it's not present all the time, but comes and goes. It was actually aggravated really badly when I started exercising (for example the left or right side of my whole body, from toes to shoulder, could be "restless"), but with time my legs have gotten used to that. I take iron supplements regularly (apparently low ferritin can trigger the symptoms too) and when it strikes, I have found it helpful to go and shower my feet, legs and hips with ice-cold water for a good while, then fold a towel on my bed and sleep with the blanket covering me only waist-up. It's not pleasant but as long as my legs are cold the symptoms seem to dissappear. On bad night I might have to do this every hour or so, but I still get sleep in between.

(I'm not on medication for the RLS yet as most of the time I have no symptoms, but I know they are likely to get more freguent with age.)
Start: 181 lbs (BMI 33.1, obese)
Goal 1: Reach 136 (healthy BMI) - Done 12/18 2015

Goal 2: Reach 115 (ideal weight)

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Old 09-23-2015, 01:22 PM   #7
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EDS III here. Careful but deep yoga practice and strength training help me feel normal. Weighing less makes my joints and tendons hurt less and keeps my skin less irritated.

Trying like crazy not to fit into my genes.

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Old 12-10-2015, 09:58 PM   #8
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RLS here. Mine is worse when my legs are cold. Many nights I use a heating pad to keep them warm. Tonight I am having trouble sitting here trying to watch the football game and my legs are going crazy! I am going to do some exercises and then get the heating pad out.
Failing to plan...is planning to fail.

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