Proving I have EDS

CinderBridge asked in a comment to my last post about the the techniques I use to prove I have EDS. Since EDS is a recognized physical disorder sometimes I'll get more respect if I can prove I have it.
This doesn't come up often. Most doctors don't know what EDS is or think it is no big deal. For me, it could explain the majority of my health problems or it could only explain my joint laxity and I could still have CFS/ME or something else.
I was diagnosed with EDS by a rheumatologist. Occasionally I'll report that dx to another doctor but they won't believe me. The most recent reason was 'You don't look like someone with EDS". Um, can someone tell me what someone with EDS looks like?
The first things I did was 'the thumb trick.' This is an aspect of the Beighton Scale that can be done sitting down. Engodo demonstrates the thumb trick and explains the Scale in a video on YouTube. When I was trying to 'prove' my EDS to my Opthamologist this didn't work because he wasn't familiar with the scale.

What did work was mashing my upper ear. I also learned about this from Engodo.


The last thing I did was to remind my doctor that my sclera are blue. I'm having trouble finding a simple link to prove this but this is a great handout for your eye care doctor that lists eye complications in EDS and includes blue sclera.

Confusion and Memory Loss

Brain fog is a very common symptom for almost every chronic illness I've ever been diagnosed with. So, I've cried and felt 'stupid' but I've never questioned it. I fought back by trying to keep reading and writing even tho I believed I was horrible at it. Coping involved lists, expecting less of myself, and not putting myself in positions where I'd be essential in any way.
However, while reading the Migraines community on LiveJournal I came to realize that part of my problem could be medication side effects. Initially, I thought that my problems with language could be attributed to my migraine preventative and since the resulting communication nightmare was wrecking havoc on my marriage I decided to look up Topamax and consider coming off of it.
(I don't look up my medications online normally. Somehow I think this means that if I do have an adverse reaction at least I'll know it is real. Too many times I've been told that I'm not really having that side effect, I just think I am because I expect to after reading the drug info or am otherwise trying to sabotage things.)
Topamax had all of the side effects I was expecting plus confusion and memory loss. Hmm, coming off this might really be a good idea. But then, I looked up my other medications and found at least two more that could cause confusion. Great. It looked like my own medications could be causing the brain fog. Medications that affect my brain I can see causing 'brain fog' but my stomach medicine and NSAID?
I feel like I've caused my own problems. I just expected the brain fog and was so ashamed of it that I never mentioned it to a doctor. When I mentioned it to Mr. Wacky he tried to be reassuring and comforting which was the most loving thing he could do. However, he never suggested that I talk to my doctor either, partly because he just hasn't perceived my brain fog in the same way I have. (Unfortunately, the problems were so persistent that he came to believe I was being willfully obtuse.)
I'm tempted to give up on doctors and medication. Right now, it feels like they might be doing more harm than good. However, since I'm diabetic and have glaucoma there would be real consequences to this plan. Consequences that Mr. Wacky won't quietly put up with. He's not happy about my willingness to put up with daily migraines, non-functional fingers, and constant nausea and gall bladder pain but he will if I really think it is for the best. However, uncontrolled diabetes and glaucoma are not negotiable. 
Further complicating things is the matter of pain. The worse my pain is the foggier I am. Mr. Wacky confirms this. My overall pain is best managed with narcotics and Relafen. Both of which can cause confusion.
What am I to do? I wish I knew. I should talk to my GP and my neurologist but honestly I'm afraid to. Most of my fears are irrational but they're still real to me. I've made same med changes on my own and I don't know how my doctors will react to that. Plus, my brain fog tends to cause some 'false memories' and I'm afraid that yet again I'll be told that I belong on the psych ward. Worse, the doctor will think that but won't say it and my quality of care will be forever compromised.
My attitude sucks right now. I keep wishing that things could be 'easier.' Giving up may make things simpler but not easier and certainly not better. Right now, I just wish I had a clear way to measure my 'brain fog' so I could tell if the changes I'm making are helping. Why put up with abdominal pain if it isn't helping me?
People talk about being forgetful, not retaining what they read, and having problems with getting the right words out. However, no one seems to mention remembering things 'wrong' or having clear memories of things others tell you never happened. Am I alone in this? Are my fears that I'm 'crazy' justified?

Yay for my Adjustable Blanket Support

I've been having some trouble with my feet. This is worst at home, especially in bed.
The problems seem to be caused by my bedclothes and my house shoes. My toes get subluxated easily and my heels won't stay at the back of my shoes.
So far we've done a few things to try to help me. I've got new socks purchased in the sporting goods department that are a bit larger than my usual and more padded. I've tried on endless pairs of bedroom slippers but have yet to find a pair that will fit and prevent my feet from pushing forwards thus compressing my toes.
What has helped the most is my adjustable blanket support. By keeping most of the weight of the covers off my feet I'm more comfortable at night and can sleep with my legs in a more natural position so my hips are happier too.
If you are considering getting one there are a few things to think about. My mattress is about 15" deep and I wear a US size 9 1/2 women's shoe. Honestly, I don't have quite enough height to keep my feet completely vertical with nothing touching my toes. Also, the adjustment has to be done with pliers if there's any hope of it staying where you set it and I've still had the platform slide downwards if my PCA isn't careful or if I put too much weight on it. Also, I have a full sized bed and the support is designed for a twin so I have a limited space where it is 'safe' to put my feet.
While I do wish there was a different design available to me, I do think I got the best of what is on the market today. My feet don't get extra cold which is something I was really concerned about. I am waking up in less pain and don't necessarily need to reduce my toes every morning. All in all, good things. However, if anyone is considering redesigning the blanket support for today's bigger beds and thicker mattresses and would like some feedback please contact me.

Me and relaxation

I’ve been meaning to write about how I have mixed feelings about relaxation and stress. Stress isn’t good based on current medical understanding. However, a lot of the stress relief/management techniques I’ve seen at least touch on muscle relaxation.
Part of how I finally figured out that I needed to be checked for EDS was that Mr. Wacky was working with me to help me understand what the doctors wanted when they said “relax your ”. I would get my arm or whatnot into a comfortable position but the doctors would be frustrated. Mr. Wacky worked with me until the muscles in my arm actually relaxed and what happened? I asked him “How is this relaxing honey? It hurts. I feel like my arm is pulling apart.” One subluxated shoulder and elbow later we decided it was time to do some hypermobility research.
I’ve tried meditation but I can’t stay awake. What seems to happen is that my obstructive sleep apnea kicks in and my airway collapses. When I talked to the therapist who taught me meditation I was told my falling asleep was a ‘therapy interfering behavior.’ Yes, she did know about my sleep apnea. I got very frustrated with myself feeling that I was subconsciously sabotaging my efforts. Combine this with not feeling much better physically (and in some ways worse) and I almost quit the class. Luckily I didn’t and more active meditations were the topic of the last few classes and I was much more successful with those. However, after a pleasant meditation session on the treadmill I would feel mentally better but physically awful. Originally I attributed that to the aftereffects of the exercise but the problem continued as I started to practice mindfulness more broadly.
I didn’t clue into the real reason for my mixed feelings about meditation and other relaxation techniques until I started to pay attention to how I felt after I used Flexaril. Like many people with fibromyalgia I don’t sleep well. Often I take a medicine to help me sleep and they quickly stop working for me so I’ve tried many. A few months ago the Benadryl I had been using to help put me to sleep and stay that way stopped working so I pulled out the Flexaril. It is a muscle relaxer that tends to be used be help people sleep. Well, initially I’d get about 12 good hours of sleep but for the next three days I’d scream in pain every time I moved and Mr. Wacky would come to me and put whatever joint fell out back in place. I’m not always the sharpest crayon in the box and it took me about five doses until I figured out what was going on.
So at this point I know that having relaxed muscles means that my EDS is more likely to act up. This really could explain why I honestly don’t like most physical relaxation exercises. Why do something that is neither fun nor good for me? While relaxation would seem good long term I think the short term increase in pain and the long term joint damage counteracts that.
This got me to pay more attention in general. I’ve had some very pleasant times recently and thus have been content and naturally relaxed. After a good night’s sleep with or without medicine I’d often be in a lot of pain. I’d thought it was from being so still but if I’d wake up in the middle of the night to roll over I’d often pop a shoulder out if I didn’t do it carefully. The biggest problem has been my toes, each morning I have to tug them back into place. All I can figure is that my muscles are relaxed in my sleep and so my joints are especially lax.
I’ve taken to making a nest of sorts for myself out of pillows. I’m surrounded on all sides and can’t easily move. This has forced me to wake up more fully if I want or need to change positions but I’m waking up in less pain overall. So, in theory I should now be safe at night now, right? WRONG! Last night I woke up with a band of pain in my right foot across the base of my toes. I couldn’t yell loud enough to get Mr. Wacky’s attention and somehow couldn’t even bring myself to try to put all the toes back in place myself. So I got out of bed and walked towards him until I got his attention. As I sobbed and apologized for bothering him he quickly and quietly tugged until I cried ‘Uncle’ and begged him to give up. Luckily by then he’d done enough that the pain started to ease although neither of us felt any pops. What happened? The weight of my blankets and comforter had pushed my toes back towards my body as I slept. *facepalm* I’m not even ‘safe’ in my own bed surrounded by my nest of pillows. I may have to get one of those contraptions for people with nerve damage in their feet to keep the covers from touching them. That just sounds like it will lead to chilly feet.
I’m almost scared to get too relaxed now. Well, the consequences of relaxation seem to undo relaxation rather quickly. I’m known for being wound rather tight and apparently this has served me well in terms of EDS. However, I don’t want to stay an anxious mess the rest of my life nor do I want to craft splints out of cardboard and duct tape out of desperation for every joint in my body. How do I relax my mind and spirit without relaxing my muscles? An ever better option would be to relax overall and still keep my joints in place. 

Ehlers-Danlos Syndrome and misrepresentation

I've sort of stepped back in my interactions with the chronic illness community in recent weeks because my primary diagnosis has changed. I feel like a fraud.
For about ten years I've believed that I've had something similar to Lupus and to save a lot of explaining I just said I did. I've been diagnosed with RA and UCTD (Undifferentiated Connective Tissue Disease) in the past.
At a visit with a rheumatologist I was recently told that my previous diagnoses were all incorrect. The doctor explained that my blood work should have more significant abnormalities by now if something was seriously wrong with me. Somehow my body just has a tendency towards unusually high white counts and a consistently high sed rate and other inflammatory markers but all that is meaningless.
So, according to him all I have is Fibromyalgia and he's never had a patient not get better who's actively done what they've been told. Well, I needed a topic change at this point so I asked him about my joints and was diagnosed with Elhers-Danlos Syndrome, hypermobility type aka type 3. According to him the EDS is a trivial thing with little if any bearing on my health.
Well, I won't be seeing that doctor ever again but he has done me a favor. Based on my research EDS isn't as trivial as he made it out to be and could very well explain a lot of my health problems.
Unfortunately, I'm the only one in my family with an EDS dx and my parents don't want to investigate the matter. Without a family history my GP won't do further testing to check me for the vascular type, type 4. That I have no family history of type 3 but still have that doesn't seem to change her mind.

I'm thrilled that I might have an answer to all the little problems. From the jaw that would lock and I've have to tug back into place from the time I was 8. To the hips that get all 'wrong' that I need help to fix so I can walk again.
That just makes it feel even worse that I've misrepresented myself all these years. No, I didn't do it on purpose. Yes, people do get new diagnoses on a regular basis. However, it doesn't seem like people are told they've been wrong for ten years all that often. It doesn't help that I didn't explain that I didn't have a firm Lupus diagnosis. I didn't even tend to add the ANA negative part all that often.
I could just slink away from all the friends I've made over the past ten years but I don't want to do that. I've meet really nice people who I can still relate to about being ill and all sorts of other things. I'm finally meeting people who are both sick and share some of my other interests like knitting, WoW, makeup, and having a dirty mind. I really don't want to start all over again. However, I do want to meet more people with EDS.

So, I'm 'fessing up. I don't have Lupus. If that doc is right, I don't have any type of auto-immune disorder. However, I'm not going to run away in shame for misrepresenting myself either. Mr. Wacky says that I haven't really misrepresented myself and that no one relates their diagnoses word for word but I'm having trouble believing him. (Plus, he's biased ;)