Q & A
Question- So does this disease make you double jointed?
Answer- By definition, there is no such thing as being 'double jointed'. However, most people are aware of this. So to answer the question in the spirit intended, yes. EDS patient is generally hyperflexible and often times, people who have a natural ability to bend and flex into unnatural ways have EDS. There are exceptions to this rule, just like in any other thing. Some people can be hyperflexible and not have EDS. They could be trained or have another connective tissue disease.
Question- Is it painful to have EDS?
Answer- I would have to say yes, it is painful. I don't know a single person with EDS who doesn't deal with some kind of pain on a daily basis. The severity of the pain depends on the patient. But in my case, it is very painful. On an average day, I dislocate between 20 to 40 different joints and some of the joints partially dislocate just from doing the simplest things. I can pick up a gallon of milk from the fridge and my shoulder will slide out of socket, or if I bend either of my ankles, crack, grind, and pop every single time.
Question- How do you deal with the pain?
Answer- I am on a cocktail of medications, I'm not gonna say how many meds, but it's a lot. I am on certain meds for anti-inflammatory reason, others are like a nerve buffer between damaged nerves that fire off random pain signals. Pain killers for when I am having a really rough day and have a bad flare up. This is more common in the winter time. and I have a Medtronic Spinal Stimulation Unit implanted in my back. It uses electricity to confuse the brain and trick it into thinking that pain signals are tingles or vibrations.
Question- What else can and do you use to manage pain?
Answer- Anyone who deals with a chronic pain issue, knows you have to be creative and do your homework on ways to manage pain. I studied homeopathic medicine for a year to find ways to deal with pain. One of the things I have found that helps deal with pain is taking ginger, either in a pill or in some sort of food. Arnica is another natural pain killer that works for moderate to severe pain for some people. I have found a topical gel called Arnicare that works wonders, especially on sore muscles. I use this stuff on my back and my wife uses it too.
There are other topical pain relievers that I have used or have heard work well. Salonpas lidocaine patches, Bio-Freeze, Bengay, Blue Emu are all things that I have heard work, depending on the person. I'm not sure if the lidocaine patches would work on a Zebra since many of us are immune to "Caine" drugs.
Question- How do you manage to stay positive when things just seem to get worse?
Answer- It isn't easy, but you have to try. When I first got out of the Army, I was in a really dark place. I was angry that I had to be discharged from the service because of my injuries and this disease, along with other medical issues. It wasn't until I met my wife that I really started to have a good outlook on things. The people around you can have an influence on your mindset. If you surround yourself with negative people, you will be more negative too.
Question- Since you are retired and permanently disabled, what do you do with your time?
Answer- I do a lot of things. The problem that I have is that I get bored very easily. I need a constant flow of mental stimulation. When I got out of the Army, and my body went to hell, I realized that I still had my mind and that I needed to use it. So I embarked on a mission to educate myself on all kinds of things that I find interesting. History, medicine, hunting, fishing, and working with the EDS community are my primary interests and I do things that are in close relation to these to keep myself occupied. Also, my wife and I have what I call reversed roles. I stay at home, doing the housework while she goes to work. I have my pension from the service to help cover bills and doing the housework is much appreciated by her. Also, I am a neat and clean freak, probably has something to do with my OCD and the standards of cleanliness that the Army ingrained into me. I clean the house every day. I have other hobbies too if you would like to know what they are, please feel free to check out my photo gallery, there is a button at the bottom that leads to my hobbies gallery.
Question- Is EDS curable?
Answer- No, EDS is a life long struggle, although supportive therapies and preventative measures can be taken to minimize the damage and improve quality of life.
Question- How do you go about getting diagnosed?
Answer- Getting diagnosed can be a tricky thing. especially if you don't have a clue what is wrong with you. Since there is a huge array of joint diseases, syndromes, and issues that something could be, doctors will tend to look for the most common thing first. When doctors are in medical school, they are told, "When you hear hoof beats, think horses, not zebras".
What this means is Zebras are the rarer, stranger, diagnoses that are less common. And the majority of the time, the patient that has an issue, is not a zebra. Reaching out to online communities about EDS can help lead you in the right direction in finding a doctor that is more knowledgeable in dealing and diagnosing EDS. If you suspect you or a loved one has EDS, Facebook has loads of EDS groups that can have thousands of members that can tell you what physicians in an area are equipped to handle your case. You can find links to some of these groups in the web-links tab on this website.