Hypermobility and Life, Part 3

This past week I went back to the doctor about pain, numbness, fatigue, etc. and I was once again reminded by how frustrating it is to try and drag some kind of daily solution out of physicians. Grr. I'm doing a project on innovations in the US healthcare system, and I can say it definitely needs a few.

The last topic I wanted to cover on hypermobility before going back to rambling about other things that occupy my mind are fibromyalgia and chronic fatigue syndrome (CFS). Both of these often come with hypermobility (in fact, one of the first sites I ever visited about hypermobility was created by this girl who had all three). Since I'm lucky enough not to have either, or only have the fatigue part of CFS, I can't tell you much from personal experience. Here's two great resources, this one is for fibromyalgia, and this one for CFS.

All three syndromes have several overlapping symptoms, mainly involving joint pain. I've read other places that hypermobility and CFS together can also look like multiple sclerosis (MS), since chronic fatigue wears down your awareness and memory. Anyways, when in doubt there are plenty of tests for MS so it should be relatively easy to figure out.

I kind of want to use the end of this post for a feminist rant about how diseases that affect mainly women don't get enough attention, like this or breast cancer. That doesn't seem very fair though since there are men who get this too... I guess my real issue is the conversation between physicians and their patients. Doctors today seem pretty at diagnosing and not too bad at treating specific problems. Things that show up all over the body with a wide range of symptoms seem to throw people off. TV makes this look really cool and sexy with shows like House where the doc is on the clock to figure it out, but in reality there doesn't seem to be as much motivation, and the whole process goes more slowly. Hopefully with this project we'll find a way for general practitioners to communicate more easily with specialists, and for specialists to talk to each other, so that they share information instead of shuffling the patient around and letting them put the pieces together for themselves.

Hypermobility and Life, Part 2

This week I'm going to talk about the things you can do to deal with stretchy joints and the pain that often comes with it.

All sources I've ever found agree that's it's really important to build up muscle and to stay relatively fit, since strong muscles help hold your joints together. I think this is one of the few positive things I've found about hypermobility: I have plenty of motivation to stay in shape! Sadly, one good workout a week isn't going to cut it. The best way to stay strong is to go regularly, or about every other day. Here are some activities I usually do, and would recommend (keep in mind everyone is different and a slightly different combination of activities may work better for you!): 

1) Swimming: there is nothing like the feeling of achy joints floating weightless in water. I would recommend swimming if for nothing more than relief from gravity. Swimming is often recommended for people with joint issues because there's no strain on your joints and it exercises pretty much everything. If you are just starting, I would go for at least 20 minutes to half an hour, and try to keep moving through the water even if you aren't actually swimming. I now swim for half an hour and feel the same as with a typical workout afterwards.

2) Elliptical machine: like swimming, this is easier on your joints than running or biking. I like the ones where the arms move so that you have a minor workout for your arms at the same time.

3) Weights: As any guy trying to beef up will tell you, weight lifting is great for building muscle. However, DON'T push too hard. Physical therapists have said that it's better to do a lot of repetitions with a small amount of weight. If you aren't sure, I would start at the lowest weight possible and gradually work your way up.  For most women like me, 5-8 lbs will be all you need for arm exercises. 

4) Yoga and Pilates: I love both of these activities, but I would recommend pilates over yoga. Pilates forces you to strengthen your core and helps those lower back muscles (at least it did for me!). Yoga feels really good until you stretch too far - I actually had to stop because I would overstretch. As with weights, I would use caution with yoga.

5) Regular physical therapy exercises: Small exercises recommended by a physical therapist can help you target your weakest joints and reduce pain on a daily basis. Stretching out the worst areas carefully every morning can make the biggest different in daily life.

I'm not a big fan of painkillers for hypermobility, mainly because they haven't had much effect for me. I try to save them for the worst days when I'm not moving much anyways and they have the best chance of helping. Pretty much any anti-inflammatory seems to be ok, since the goal with these guys is to reduce inflammation around joints that haven't been moving properly. Some other things I've tried are:

1) Glucosamine: you can buy it at any drugstore where the vitamins are. After taking this regularly for a month, it helps a little. Some people have reported significant effects, but for me it was just somewhat better. The key is to take it regularly so it can accumulate in your system.

2) Honey: I tried this out of curiosity, and it has about the same effect as glucosamine after about the same amount of time. I put about 2 tablespoons in a cup of boiled water every morning.

3) Magnetic bracelets: these have actually worked surprisingly well. My muscles feel a little less tense and in pain when I wear these, and I'm able to spend more time typing at the computer without pain. 

3) Amber: wearing amber has no effect whatsoever, but it's a fun folk remedy.

4) Work rearrangement: If you spend a lot of time at a desk or on the computer, you will probably have to figure out the best configuration so that you aren't straining any joints or pinching nerves. There are plenty of ergonomic guides and products online to help you out. The two that make the most difference for me are a good desk chair (at a height where your screen is at eyelevel and your keyboard is across from your waist), and a foam pad for my wrists in front of the keyboard.

I hope to add other ideas to this list at some point... :-)

Next week I'll go through some things hypermobility can be paired with.

Hypermobility and Life, Part 1

A few years ago, I had a serious struggle with our current medical system: even though I was having a lot of pain and tingling in both arms, no doctor seemed to know what was going on, and I would be sent home with advice to take some Advil for a few weeks. I was referred from person to person, without gaining any knowledge about what was going on, and while losing confidence that doctors listen to their patients. Two years and 13 doctors, physical therapists, and specialists later, I finally found a rheumatologist who pointed me in the right direction: hypermobility syndrome. By this point, I had learned to check whatever a doctor told me against online resources, and see how the diagnosis matched up to the symptoms I had. This particular physician was right, but I've learned that with more complex medical conditions you may need a secondary information source besides your doctor: other people on the internet.

I am going to spend this post discussing what hypermobility is and include some links I found helpful. Hopefully this and the following posts will find other people looking for answers. I am not advising replacing your physician with your computer, but I'd like to spare somebody else the frustration I experienced. :-)

Hypermobility syndrome is a genetic condition characterized by flexible joints. On Wikipedia's page on hypermobility, you can find several images of what people with hypermobile joints can do. The two tests

 my doctor used were: placing your hands flat on the floor without bending your knees, and bending your hand 

back towards your arm such that there is less than 90 degrees between the back of your hand 

and the top of your arm with your elbow straight. These flexible joints come from a lack of collagen in the body, which is the glue that holds stuff together. While it sounds kind of cool to be so flexible, there are a LOT of other less cool symptoms that go along with hypermobility because collagen doesn't just work in joints, but also affects other parts of the body. Symptoms can include:

• Joint pain, numbness, and tingling
• Joints that dislocate easily
• Clicking or popping joints
• Stretchy skin that tears easily
• Flat feet
• Bruises that form easily
• Varicose vein formation, especially after severe bruising
• Headaches and/or migraines
• Temperomandibular Joint Syndrome, or TMJ
• Uterine prolapse
• Mitral valve prolapse

among others. Studies have also been done linking hypermobility syndrome to depression and anxiety disorders.

Hypermobility affects women more than men (up to 4 times more, depending on the source). This syndrome is the least extreme and most common version of Ehlers-Danlos Syndrome, in which joints and organs can be become stretchy to the point of no longer functioning. It has been my experience that almost any other random or odd medical issues you've been having can probably be connected to hypermobility because it has such widespread effects on the body.

If you are trying to find out more about hypermobility, I would recommend starting with the Wikipedia pages on Hypermobility and Ehlers-Danlos, then move to some of the links attached to this post, which are hypermobility resources. The Mayo Clinic website is great for general information, but for more detailed information beyond what Wikipedia provides you will probably have to look somewhere more specific.

The next posts will discuss other syndromes often connected with hypermobility, and what you can do to deal with hypermobility on a daily basis. 

Links: 

Wikipedia on Hypermobility

Wikipedia on Ehlers-Danlos

Hypermobility online resource, based in UK

Hypermobility online resource: created and run individually

Study connecting hypermobility and anxiety

Keywords: hypermobility, joint pain, chronic fatigue

Saved by the Audi A4

After an incredibly snowy road trip through Colorado with no real snow driving experience, I have new respect for the Audi A4 quattro and its ability to stay on the road. A friend and I spent the equivalent of 2 days of driving through snowy mountain passes behind trucks, past deer, between rock faces, over narrow bridges, and around other stranded drivers. Nobody living in the mountains in Colorado owns a sedan, unless it's a Subaru, or an Audi for those who want to spend a little more. How do I start explaining how glad we were this car made up for own cold-weather skills...

First of all, four wheel drive was absolutely essential. It was the main reason we took this car for the trip over a Honda Civic even though it gets worse gas mileage (plus, we looked way more badass, but we can pretend the mileage was the real reason...). 

Second, EPS or Electronic Stability Program played a huge role in my survival. Great for driving on dirt roads to the Grand Canyon, or for staying on the road in a whiteout with a 6% downgrade. I don't know enough about cars to know how this works, but the placebo effect at least was excellent: I was a much better driver with this option on.

Third, Anti-Lock Brakes literally kept us from crashing into the guard rail the one time the wheels actually lost contact during the trip. We stopped after skidding across one lane (about 20 feet) with me standing on the brakes. 

Steering, acceleration and braking were all pretty awesome and did not wear out my tensed muscles any further. My only complaint on this end: jerky acceleration at low speeds. You can forget smooth parallel parking and left turns with this baby, but if you are buying this for riding in town then clearly you do not deserve its full capability.

My one true complaint: who the heck made the seats all stiff and performance-like in any car you may be stuck in for 3 hours in a blizzard??? Even for a nice car you occasionally take on road trips, the lack of comfort is unacceptable. I may be driving a luxury sedan with high performance, but maybe I want some comfort so my butt isn't numb halfway over the mountain with no end in sight.

In summary, if I ever find myself living in Colorado and looking for a nice car, I will be purchasing a descendant of the Audi A4 quattro.