Wednesday, November 11, 2009

Good News, Bad News

So the good news... Life has been relatively uneventful.

Which is also the bad news, because I have nothing to post about.

Well... I could talk about the wonderful world of PROPRIOCEPTION. That would be fun, right?

So basic overview... Proprioception is the inner sense of where your various body parts are in relation to each other. When you're pulled over by police, and they do a field sobriety test, proprioception is what allows you to touch your nose with your eyes closed.

In people with Ehlers-Danlos syndrome, proprioception is permanently impaired to different degrees (presumably in relation to the severity of EDS). When a limb moves beyond the normal range of motion (eg: dislocation, subluxation, or increased flexibility) it is easy to lose a sense of where the limb is in relation to the body.

My proprioception seems to be getting worse, especially in relation to my hands, as my joints become more and more unstable. Last week I dislocated the same finger twice while stapling files at work. I have a hard time grasping my coffee cup: it feels like I'm going to drop it when I pick it up, so I have to pick it up with both hands a lot of the time. While typing, I've always had to look at the keyboard, but I have been making increasingly more typing (not spelling) errors lately, because I can't seem to feel if I've hit the key or not. --Just in that last sentence I had to retype the same word 5 times.-- I also have been having issues writing, because I can't seem to grip a pen or pencil tightly enough. I find cursive to be easier than printing when my hands are being mean.

I have always paid more attention to where I'm putting my feet than most people I know. I've gone for hikes (many years ago, when my joints still worked), and not noticed a single detail about the scenery until we got to our destination, because I've been looking at my feet the whole way. This makes getting lost significantly easier, because I've been paying attention only to what's below me.

I have more good news! My nephew that gave me swine flu is healthy again. He wasn't sick for very long, and it hit him like a normal flu. His mom didn't get sick... And both of them had their swine flu shots the day before my nephew started showing symptoms (so he already had it before he got the shot).

8 comments:

Linda Covert said...

Hi, This is Linda and I usually read your blog. I am glad you got over the swine flu. My daughter has it (she's a nurse) and boy was she sick. The tamaflu was the problem. She said that everyone throws it up. Many of the people she works with, don't take the tamaflu.

Do you know anything about Rhumatoid Arthritis and Hypermobility? I have hypermobility and I have been in pain for 2 months. The rhumatologist said that I don't have damage to the bones.

I look forward to your reply!

Linda

BubbleGirl said...

Hi Linda,
Sorry to hear your daughter is sick. The worst thing about tamiflu is that doctors basically only prescribe it to people that ask for "something to help with the flu." It's not medically advised unless you start taking it within 48 hours of symptoms, and it doesn't really do anything beneficial. My doctor told me that between colloidal silver, apple cider vinegar, and lemon ginger tea, I would have more antivirals in my system than taking tamiflu would have done.

I don't know anything about rheumatoid arthritis. I know my PCP has sent me for tests because my joint pain mimics arthritic pain, but that I personally don't have any form of arthritis. Hypermobility can be quite painful. Depending on the cause of your hypermobility you may not respond well to pain killers. I would talk to your doctor about possibly muscle relaxers to take with pain killers. It also depends on the kind of pain you're in. I go to a chiropractor, and he uses the "activator method" which is a lot lower impact than hand adjustments. It has helped me a lot with my pain, and I don't limp any more, after 3 years of limping. Hot and cold packs also help to some degree. Taking breaks in the middle of doing things is also helpful.

elise said...

Hi cutie,
So glad you are feeling better and that nothing "exciting" is going on. ;)

Do you think clumsiness and proprioception are related or is clumsiness more related to instability? Just curious and something I hadn't thought about before.

You might want to have your doc look at your hands if they are becoming worse. I wonder if you have something going on somewhere else that is causing the loss of sensation in your hands/fingers. Neuropathy?

Rheumatoid arthritis is an autoimmune disorder that is not any more likely occur in someone with EDS vs anyone else. However, Osteoarthritis is very common in EDSers because the joint cushioning wears away over time. A bone scan (not DEXA) can clearly show areas of osteoarthritis in the body, though you can probably already tell by the way various joints might feel. I learned that I have osteoarthritis in my distal finger joints, which explains why they hurt so much especially when I am cold or the weather changes.

hugs,
e

Bendy_Clutz said...

Growing up I was always just labeled as a clutz, same with my mom. Mom has to pay attention to where her feet are more than anyone else I know (i really hope that by knowing i have EDS now, I can hopefully somehow magically prevent myself from being how mom is when im older.. im not holding breath but i can hope right?)
and im the only one my age i know that needs to watch my feet too Lol. Should get to know a few more EDS-er's, then i wouldnt feel so odd =)

Veronica said...

Oh god yes, proprioception. BANE OF MY LIFE. I will walk into doorframes, even when I'm paying attention and telling myself to avoid it.

My physio told me I have excellent balance and the worst proprioception she's ever seen. Apparently my balance is because I've learned how to use my eyes to cheat. Stand up and shut my eyes and whoosh! over I fall.

So what I'm saying is, I feel your frustrations.

BubbleGirl said...

Elise,
Poor proprioception is a really big cause of clumsiness, but inner ear issues, balance, and joint instabilities also play a huge role. I don't currently have a PCP/family doctor. I haven't found any that I agree with that are accepting new patients, and seeing a doctor on a walk-in basis for chronic problems is a pain in the @$$, as you probably already know.

Bendy_Clutz,
I've noticed that I subconsciously "map" out areas I'm in frequently, in a similar way to what I would imagine blind people doing. It helps to know that it's 7 steps from the living room to the bathroom, or 4 steps from the doorway to the stairs. I used to fall all the time, but I'm getting better at listening to my body, and standing still until the world feels right again.

Veronica,
I also FREQUENTLY walk into door frames. Especially at work. It's ridiculous. My coworkers laugh at me all the time because of it. I also use my eye to balance, as well as the pressure on different parts of my feet (more pressure on the toes, I'm gonna fall forward... etc.). A lot of my balance issues also come from what I have long suspected is POTS. I lose consciousness upon standing, especially if I've gone too long without eating, or if I get dehydrated.

Laura said...

My name is Laura and I just stumbled upon your blog online. I was just recently diagnosed with Ehlers Danlos, a probable hypermobility only (hopefully) type, but did not have genetic testing done. I have VERY hypermobile joints (knees bend backwards like a rooster practically), knees, hips and shoulders dislocating and all joints bend in a rubber man circus sideshow kind of way. I have had huge bilateral bakers cysts behind my knees since childhood, and in recent years have had a huge increase of arthritic joint pain, with a negative RA workup. So much of your story mirrors mine. I have POTS as well, and frequently things "go black" as i stand from a squatting or bending position. I am twenty five years old, and feel like my body is sixty five. I am frequently walking into door frames and such, and I'm not sure if any of this is related, but about a year ago I developed an autoimmune peripheral neuropathy (post viral) that was mainly sensory (although some motor) and it has taken me about this past year to recover. My neurologist and rheumy didn't seem to think they were related, but I did have ascending numbness in my limbs that spread to all over my body within a few weeks, with burning sensation, crawling feelings and electric shock type pain. Not to leave you a novel here, but I find it bizarre that someone else with such a rare genetic disorder has other symptoms that seem very similar to what I had going on last year. I wish you luck in your journey. If there is anything I have learned in the past few years, its that you have to be your own advocate.
Thanks
Laura

Anonymous said...

Does this lack of proprioception affect your social skills? Like, don't you find it hard to know if someone is looking at you from a certain distance? Or, don't you find it hard to recognize people's faces? Or people's intentions? Or maybe you use a wrong intonation, wich could cause missunderstanding?
(Sorry for my english)