As an information page I figured I should include a page that actually listed all the disorders or conditions that I have confirmed diagnosises for. I will try to give a breif description of each disorder, soem links and mainly as to how they affect my daily life. (Updated April 22nd - Included the newly diagnosed GI disorders)
Ehlers Danlos Syndrome - "Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue." from the Ehlers Danlos National Foundation. Basically this means that anything in the body that is made up of collagen has the potential for issues. These include the skin, tendons, ligaments, eyes, teeth, heart and other organs. Pretty much everything in the body is defective in some way and it results in many problems. The majority of my other issues are secondary to the EDS and occur quite often in the EDS population. I am lucky enough to have a mix of two of the types:
Ehlers Danlos Syndrome - Hypermobile Type (HEDS) - I was diagnosed with this October of 2003 by a great geneticist in Toronto. HEDS greatly affects my body and has caused many problems over the years and is continously getting worse as time goes on. In regards to my joints, they all are very hypermobile and I have an incredible range of motion (which most gymnasts and dancers would kill for!) and my joints all bend backwards and deviate laterally and medially. This causes joint dislocations (the bones in the joint being displaced) that are thankfully easily to reduce (put back into place) after being shown the proper way to do so and generally calm down after a day or so for the minor dislocations, however the more you dislocate the joint, the easier it is to go out in subsequent dislocations. Spraining of a joint often happens pretty easily but unfortunatly they do not tend to heal. Once something is sprained, it pretty much stays in this state. Tendonitis, bursitis, tendonosis and other soft tissue injuries are the norm in an EDSer so bracing and splinting are key with flare ups. This is a great article, however it is full of a lot of medical terminology but has the most information that I have ever seen. You can get to it here.
Ehlers Danlos Syndrome - Classical Type (CEDS) - I just recently (July 2010) found out that not only do I have the hypermobile type, I have a lot of classical type overlap as well. Thankfully for me, it only mildly affects my day to day life. We have found out that this is the reason that I was born so prematurly (I was born at 29 weeks and doctor's could never figure out why). My skin is slightly extendible but not near the degree of others. For me it is more scars forming from even the slightest injury (I have scars from bandaids!), very soft velvety skin and abnormal scarring. This is why everyone described my knee scars as 'ugly' scars, I was even told that if I had surgery again than I should be asking for a cosmetic surgeon to do the closing and sutures. I am very sensitive (but not allergic) to latex and many types of adhesives. Again this is a very medically sounding article but a great sourse of information here.
Autonomic Dysfunction - I am still looking for the full, official diagnosis of this. I know that I have some form of this but it has not been figured out yet. The problems associated with this have been around for a long long time and have so many different types of symptoms it's hard to know what are from this disorder and which are from the EDS issues. It was first suggested by my internist last spring and then another internist who specializes in autonomic, sleep and eds issues agreed fully with the assumption that this is what it is (July 2010). This is the one that most affects my daily life. I have insane sweating isssues and can break out in a drenching sweat, from the waist up, at any time with no warning. I am talking sweating so much that I have sweat dripping off of my face and my shirtrs are completely soaked through. I also get very light headed, dizzy and shakey. My body can not regulate my internal temperature and my mom jokes that I have no internal thermostat. This is the current issue that I am trying to get under control so that I can do more without being completely embarassed. I do have a lot of the other autonomic issues but the sweating one is the most obvious. Here is some more information on autonomic dysfunction. Some other potential disorders that I have that goes along with this are POTS and MVP. This is also the reason that I have such bad sinus tachycardia (a high pulse rate with no known reason for it occuring)
Chronic Fatigue Syndrome (CFS) - Most people know about this condition but do not completely understand it. It is not just being lazy, I wish! I can sleep 12+ hours a night (when I can finaly get to sleep that is) and still be exhausted. Even a short trip out shopping and I need to go home and have a nap to try and regain some energy. I believe it is also the CFS that is causing a lot of my 'smell allergies'. If someone comes in to our house wearing strong perfume or cologne I have trouble breathing and have an allergic reaction. We try to keep most 'bad odours' (perfumes, air fresheners, body wash, some laundry detergents etc) out of the house but it's hard to control them when you are out of the house. It also impairs the immune system which is definitly an issue in my case. I am the first person to get sick in the house and the one that gets hit hardest. Most of the family can have the everyday normal cold and I end up with multiple infections and on antibiotics for a week. This is a very misunderstood condition and I am reluctant to talk about it because of it. More information, including symptoms and diagnostic criteria can be found here.
Chronic Pain - Well this one is pretty obvious I think. Because of the HEDS causing dislocations (and following reductions) and sprains, the cervical spine issues, the osteoporosis and different types of arthritis, I live each day in chronic pain. I take pretty heavy duty medications but these allow me to live a semblance of a normal life. There are days when the pain isn't too bad and I can do lots but there are also days when I am in so much pain that I barely even get out of bed. Surprisingly, I was diagnosed with chronic pain in the fall of 2002 following my last knee surgery, before my EDS diagnosis. Along with the chronic pain, I also have neuropathic pain (nerve pain) in my right shoulder, which is thankfully being controlled by medications at this point. One site that I must suggest to anyone who is going through any type of pain is 'The Pain Clinic', you might have to do a bit of digging around but I looked for a short amount of time and came up with a LOT of great information!
Gastroesophageal Reflux Disease (GERD) - Again a common disorder with EDSers and in my case the medications that I am on, is also contributing to this problem. I am on a protein pump inhibitor, that as long as I remember to take my dose, causes no problems. There are a few times if I eat something wrong or am under a lot of stress, I get a some acid reflux but can take an OTC and it will be gone. Info here.
Gastroparesis - This is a strange disease as it seems to affect everybody differently. For me it leads to me not wanting to eat much, not being able to eat much in one sitting, bloating, abdominal pain and constipation. We think this has to do with my swallowing issues s as well as the stomach being full sends signals to my brain that I cant eat anymore. We are still in the early stages of this disorder and has not been fully explored by my doctor yet. More info here
Bile Reflux - Another new and not fully exlored diagnosis. For now, more information of bile reflux.
Osteoporosis - This is the most recent, and surprising, disorders, I found out about it in September of 2010. While my numbers arent obvious numbers (I am actually in the osteopenia range) but because of my age and the drastic decrease in numbers over a few short years, it is being agresivly as full out osteoporosis. This is basically your bone density descreasing. So instead of solid bones, mine aren't as strong and can break very easily. I am on a monthly medication for this and have to be very carefull about preventing falls and if I do fall, protecting the more at risk joints which are my wrists and hips. Here is some osteoporosis information.
Osteoarthritis (OA) - This is the basic wear and tear version of arthritis. I was told I had this following my second knee surgery in 2002. My OS at the time told me that as I had it in the knee, I most likely had it in the other joints as well. Following different doctors have agreed that this is one aspect of the chronic pain picture. This is a degenerative condition that is the breakdown or destruction of cartilage. Info here.
Herniated Disc - Very common in the normal population, very common in the EDS poptulation, not very common in 29 year old females. Thankfully it is not at the stage were surgery is needed, but it is definitly causing problems. Between this, cervical stenosis and bone spurs, I have severe headaches that no one can officialy figure out but we assume it's all the issues with the neck. Thankfully they are under control with medications. I still get the headaches occasionaly but no where near the severity or frequency as before. Info here.
Mitral Valve Prolapse (MVP) - We just found out that I had this after years of my cardiologist waffling back and forth over whether I have it or not. But my new cardiologist has put in her report to my GP that I do actually have this. For now all that means is that I have to have a yearly echocardiogram to keep an eye on it and to have an antibiotic given before any dental surgery. The medication that is most commonly used to treat this is the great Beta Blockers, making this the third condition that my daily dose treats. There is a lot more information here. [Still trying to figure this one out, sometimes it looks like I have it while others looks like I don't]
Fibromyalgia (FMS) - The controversial one! My family doctor says yes, my rheumy told me to not let it get on my medical record, an internist said yes and then my rhuemy says that yes I most likely have it but that it is not important as my EDS issues basically 'trump' the FMS issues. As I don't want to put my foot in my mouth or offend anyone, I will leave this and you can go here for more information.
