Opening Up

In the LINKS page I mentioned a journal posting about my own experience with EDS and below I'm re-posting the entry to eliminate having to search for it elsewhere:

https://www.inspire.com/mebby13/journal/opening-up-1/

I've been quietly following this site for some time now, recently joined, and find inspiration through the stories shared here. As frustrated as I am with what EDSers go through every day and the lack of understanding there is from doctors and friends - see zebra89's post People Just Don't Understand (http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ people-just-dont-understand-1/?ref=as&asat=99829842), I also realized how incredibly encouraging this site is as a resource of resilience.

What I love about this site is that it offers a community of support and understanding from people who are experiencing what I am going through. I don't have to use analogies to explain the high level of pain I'm in, or explain away the constant fatigue and my increased need for sleep. I'm not judged for taking naps or sitting out another round. I don't have to tell people, "you can't understand if you haven't experienced it;" there's sincere empathy and compassion in the comments. I don't have to constantly hear things that are so insensitive and unhelpful that I've stopped answering questions, stopped sharing how I'm feeling, stopped opening up.

I have always felt incredibly guilty or rude when people ask me how I'm doing, and I reply simply by saying I'm in pain, tired, or that it's a bad day for me. I answer without much explanation or elaboration to avoid complaining because it's hard for me to talk about how I am, what it's like for me in general. So I don't often share very much about how EDS affects my life. Essentially, there's this constant pain that no one around me feels. I feel it. And it's everywhere. I can't give it to someone else and force them to understand, "here, try smiling through this every day. try getting through the day itself. that's how i'm feeling, that's what i'm dealing with."

Initially, being honest about my daily level of discomfort drew sympathy from family members or friends. As it becomes more mundane, and constant, to hear I'm in pain, or I'm tired, there's less sympathy and more annoyance. Along with annoyance, comes the suspicion that I'm making it up - it's all in my head (doctors have actually said this to me). And while, I know it's not awesome to hear the same thing all the time with little variation, others have to understand that's the reality of my life with EDS; that's how I'm going to feel. Every day I am in pain, I get tired easily, and can't do everything I might want to and all of that is part of living with this.

I've become "no fun to be around;" I'm the spoil-sport, the stick-in-the-mud who "won't do anything." Friends and family are frustrated with my inability to participate in activities they want me to do. And their frustration is only the tip of the iceberg of frustration I feel. I'm just as frustrated, if not more that I can't do what I used to. And sometimes I actually do participate, and suffer from overdoing it.

I workout when I can, especially when I'm around friends who go to the gym frequently, but when I do, I don't take it easy. I'm not gentle with myself and not entirely mindful of my body, so I constantly push past pain. Sometimes my problem is that I overdo it and can't move for a couple days afterwards. Other times, I fight myself, blurring the distinction between good pain and bad pain resulting in an injury.

I used to run track, and running is something I still love to do. But I can no longer run that 7:08 mile. I can no longer move like I used to. I can barely climb a flight of stairs some days without injuring myself. My hips are especially bad - I can pop them just by sitting down, going up stairs, stepping off the curb. I'd love to be as active as I was then and able to do the things I want to without the consequences of severe pain. But I can't do everything I used to, and I'm still struggling to adapt to that. In my head, I can still make my time and run the distance, in reality, I'm lucky if I'm able to run without pain. So if I can't even accept the consequences of this condition and carefully cope accordingly, how can I expect others to begin to understand?

My mom has been my strongest supporter and biggest advocate throughout everything. From sitting with me through doctors appointments that only frustrated us more, to holding my hand through the worst of it in the ER. She was there when I was diagnosed. She's watched me struggle with simple things like sidestepping or walking a straight line in physical therapy. She's witnessed my weaknesses and knows I'm not just making up symptoms.

Having her be a part of all of this doesn't mean she completely gets it, though. She still says things that aren't helpful, but she tries to understand, and that means a lot to me. She's the one who showed me this site, and it's helped her better understand what I'm going through by reading posts from all of you. 

Sharing what it's like to be in chronic pain, to be tired all the time, to suffer from frequent frustrations helps our supporters (family, friends, significant others, caregivers). It actually helps them support us better: by understanding a little bit more of what we go through, what we need from them, what they could do for us, by communicating what isn't helpful.

But it's tough. It's difficult to talk about it with people who matter to you. It's hard to tell them you're in a bad place and need help getting through the day or that although you appreciate their intentions, their comment was insensitive and pretty crappy. It's hard to be open with them and risk their initial reactions, but in order to be better understood, supported, and cared for, we need to speak up. They can't be better advocates if we aren't advocates for ourselves first.

Enduring EDS isn't a walk in the park and no one wants to come across as a burden or a complainer, but if I'm strong enough to deal daily with these struggles, my loved ones need to be strong enough to try to understand what that's like for me. Sharing won't always go over well, but we have to be open enough with each other to communicate how things could improve. If that means becoming more honest in my answers to questions like "how are you?" or passing along an article about chronic pain, or heck, even sharing this site with them, I need to give them the opportunity to understand my condition better instead of constantly closing myself off.

if I work on communicating, becoming more open about my condition, it won't change my struggles, but it will make coping with them constantly that little bit easier. It will improve my relationships and hopefully create more compassionate conversations. Those are things that will make the good days better and the difficult days a little bit more manageable.

TMJ (Temporomandibular Joint Disorder - TMD)

Temporomandibular Joint Disorder TMD/TMJ - Temporomadnibular joint and muscle disorders, commonly called, "TMJ," are a group of conditions that cause pain and dysfunction in the jaw point and the muscles that control jaw movement. Some estimates suggest that over 10 million Americans are affected by TMJ and is more common in women than in men.

For most people, pain in the area of the jaw joint or muscles doesn't signal a serious problem. Generally, discomfort from these conditions is occasional and temporary, often occurring in cycles. The pain eventually goes away with little or no treatment. Some people, however, develop significant long-term symptoms.

What is the Temporomandibular Joint - besides a mouthful?
Image below with key
The Temporomandibular joint connects the lower jaw, called the mandible, to the bone at the side of the head - the temporal bone. If you place your fingers just in the front of your ears and open your mouth, you can feel the joints. Because these joints are flexible, the jaw can move smoothly up and down and side to side, enabling us to talk, chew, and yawn. Muscles attached to and surrounding the jaw joint control its position and movement.

When we open our mouths, the rounded ends of the lower jaw, called condyles, glide along the joint socket of the temporal bone. The condyles slide back to their original position when we close our mouths. To keep this motion smooth, a soft disc lies between the condyle and the temporal bone. This disc absorbs shocks to the jaw joint from chewing and other movements.

The temporomandibular joint is different from the body's other joints. The combination of hinge and sliding motions makes this joint among the most complicated in the body. (Think of your knees or elbows... both are a pair of separate joints that are controlled individually; whereas the jaw is a pair of joints connected by the mandible, or jaw.) Also, the tissues that make up the temporomandibular joint differ from other load-bearing joints, like the knee or hip. Because of its complex movement and unique makeup, the jaw joint and its controlling muscles can pose a tremendous challenge to both patients and health care providers when problems arise.

What are TMJ Disorders?
Disorders of the jaw joint and chewing muscles - and how people respond to them - vary widely. Researchers generally agree that the conditions fall into three main categories:

1. Myofascial pain - the most common temporomandibular disorder, involves discomfort or pain in the muscles that control the jaw function.
2. Internal derangement of the joint - involves a displaced disc, dislocated jaw, or injury to the condyle.
3. Arthritis - refers to a group of degenerative / inflammatory joint disorders that can affect the temporomandibular joint.

 A person may have one or more of these conditions at the same time. Some people have other health problems that co-exist with TMJ disorders, such as chronic fatigue syndrome, sleep disturbances or fibromyalgia, a painful condition that affects muscles and other soft tissue throughout the body. It is not known whether these disorders share a common cause.

 * - To determine which of these three categories your TMJ pain falls into, pinpoint where your pain is located on the diagrams above. Is it the jaw itself? The muscles by your forehead or area close to your ears? Or is it right where you placed your fingers earlier to feel the joint? If it's the jaw bone or muscles along it (including by your forehead/temples), that falls under Myofascial pain. Internal derangement can be associated with pain in the jaw joint and the area close to your ears (where the joint is located). Arthritis pain could be the joint and muscles. Anything sound like it fits? *

People who have a rheumatic (autoimmune) disease, such as rheumatoid arthritis, may develop TMJ disease as a secondary condition. Rheumatic diseases refer to a large group of disorders that cause pain, inflammation, and stiffness in the joints, muscles, and bone. Both rheumatoid arthritis and some TMJ disorders involve inflammation of the tissues that line the joints. The exact relationship between these conditions is not known.

* It's been said that not all those who have TMJ have EDS, but all those who have EDS have TMJ. *

In other words, EDS patients make up a small portion of all those with TMJ.

How jaw joint and muscle disorders progress is not clear. Symptoms worsen and ease over time, but what causes these changes is not known. Most people have relatively mild forms of the disorder. Their symptoms improve significantly, or disappear spontaneously, within weeks or months. For others, the condition causes long-term, persistent and debilitating pain.

SIGNS & SYMPTOMS:
A variety of symptoms may be linked to TMJ disorders. Pain, particularly in the chewing muscles and/or jaw joint, is the most common symptom. Other likely symptoms include:

• radiating pain in the face, jaw, or neck,
• jaw muscle stiffness,
• limited movement or locking of the jaw,
• painful clicking, popping, cracking, or grating in the jaw joint when opening or closing the mouth,
• a change in the way the upper and lower teeth fit together

TREATMENT:
Physical Therapy options are now available in some areas and there are a variety of specialists who may be able to help. Some self-care practices can also help prevent the spread of pain and lessen the intensity of day to day discomfort:

• eating soft foods
• applying ice packs
• avoiding extreme jaw movements (such as wide yawning, loud singing, and gum chewing)
• learning techniques for relaxing and reducing stress
• practicing gentle jaw stretching and relaxing exercises that may help increase jaw movement. Your health care provider or a physical therapist can recommend exercises if appropriate for your particular condition.

As straightforward as these practices seem, they're helpful to recognize. While eating soft foods and avoiding really chewy bagels, breadsticks, meats, etc. is a given that if suffering from TMJ, you've already changed, chewing gum is a less obvious cause of pain. Anything that you can do to avoid the discomfort of unnecessary movement is recommended.

Pain Medications - For many with TMJ disorders, short-term use of over-the-counter pain medicines or nonsterodial anti-inflammatory drugs (NSAIDS), such as ibuprofen, may provide temporary relief from jaw discomfort. When necessary, your  dentist or doctor can prescribe stronger pain or anti-inflammatory medications, muscle relaxants, or anti-depressants to help ease symptoms.

Stabilization Splints - Your doctor or dentist may recommend an oral appliance, also called a stabilization splint or bite guard, which is a plastic guard that fits over the upper or lower teeth. Stabilization splints are the most widely used treatments for TMJ disorders. Studies of their effectiveness in providing pain relief, however, have, been inconclusive. If a stabilization splint is recommended, it should be used only for a short time and should not cause permanent changes in the bite. If a splint causes or increases pain, stop using it and see your health care provider.

The conservative, reversible treatments described are useful for temporary relief of pain - they are not cures for TMJ disorders. If symptoms continue over time, come back often, or worsen, tell your doctor.

Irreversible TREATMENTS:
Irreversible treatments that have not been proven to be effective - and may make the problem worse - include orthodontics to change the bite; crown and bridge work to balance the bite; grinding down teeth to bring the bite into balance, called "occlusal adjustment"; and repositioning splints, also called orthotics, which permanently alter the bite.

Surgery - Other types of treatments, such as surgical procedures, invade the tissues. Surgical treatments are controversial, often irreversible, and should be avoided where possible. There have been no long-term clinical trials to study the safety and effectiveness of surgical treatments for TMJ disorders. Nor are there standards to identify people who would most likely benefit from surgery. Failure to respond to conservative treatments, for example, does not automatically mean that surgery is necessary. If surgery is recommended, be sure to have your doctor explain to you, in words you can understand and relate to, the reason for treatment, the risks involved, and other types of treatment that may be available.

IF YOU THINK YOU HAVE A TMJ DISORDER ...
Remember that for most people, discomfort from TMJ disorders will eventually go away on its own. Simple self-care practices are often effective in easing symptoms. If treatment is needed, it should be based on a reasonable diagnosis, be conservative and reversible and be customized to your special needs. Avoid treatment that can cause permanent changes in the bite or jaw. If irreversible treatments are reccomended, be sure to get a reliable, independent second opinion.

Because there is no certified specialty for TMJ disorders in either dentistry or medicine, finding the right care can be difficult. Look for a health care provider who understands musculoskeletal disorders (affecting muscle, bone and joints) and who is trained in treating pain conditions. Pain clinics in hospitals and universities are often a good source of advice, particularly when pain continues over time and interferes with daily life. Complex cases, often marked by prolonged, persistent and severe pain; jaw dysfunction; co-existing conditions; and diminished quality of life, likely require a team of experts from various fields, such as neurology, rheumatology, pain management and others, to diagnose and treat this condition.

TIPS:
Simply leaving your teeth separated when your mouth is closed, or parting your lips slightly, can relieve some of the pain caused by clenching or grinding teeth together. Your tongue should be resting in a 'floating' position at the roof of your mouth or between the front teeth.

Some exercises you can do are opening and closing your mouth in front of a mirror; stopping when or right before your jaw pops/cracks/makes noise (and thus shifting in appearance). By practicing this movement the correct way, you'll strengthen the muscles around the joint and enable the movement to become more regular. Another way to strengthen these muscles is to place the tip of your tongue to the roof of your mouth and slowly open and close to the extent of your tongue but no farther.

As always with health, exercises, and changes to normal routines, discontinue if problems appear or persist. Consult a healthcare professional with any and all concerns.


http://www.nidcr.nih.gov
(National Institute of Dental and Craniofacial Research - U.S. Department of Health and Human Services, National Institutes of Health)

Overview

Ehlers-Danlos Syndrome (EDS) is a group of inherited (genetic) connective tissue disorders. Ranging from mild to life-threatening in severity, each individual mutation of the disorder is considered one of eleven Types.

Types
There are multiple ways in which Ehlers-Danlos Syndrome can present itself within a person. These mutations of the disorder are as follows. Each Type holds distinctive, Key Features.

I & II  - Types I and II hold similar key features with differing levels of severity; being that Type I is more severe and Type II is more mild. Apparent in approximately 80% of all cases of EDS. Related areas of concern include skin, joints and skeleton, cardiovascular system, and pregnancy issues. There are some key features of Type I and II present in the face and appearance [listed in Symptoms].

III - Apparent in about 10% of all cases of EDS, Type III is more physically tasking to the joints and may entail early on-set degenerative joint disease. It is less widespread than Types I and II has key features associated with the skin and skeleton in particular.

IV - Type IV is apparent in approximately 4% of EDS cases. Areas relating to key features include the skin, skeleton, arterial (arteries and veins), Gastrointestinal (stomach and intestines), pregnancy, and facial appearance.

[Types V- XI are discussed in Symptoms and Further Info.]

Ehlers-Danlos Syndrome is listed as an Invisible Disorder because of the lack of physical presentation: all this means is that it's not an obvious condition apparent to all. Because it is a genetic condition, it is life-long, chronic, and treatment is supportive, restorative, and/or preventative [more information regarding Treatment found here].

Links to associated information listed here.