Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Rob, it sounds as if you experience many of the issues which I do. It can be a bewildering task to sort it all out. Perhaps by my sharing a bit of the process I have gone through, you may continue to have hope and to persevere. I think perseverance is perhaps the single most important attribute one can have (after the desire to be healthy) in making progress when you have so many separate -- but often intertwined -- health issues. I have suffered from depression all of my life. When I was young, my parents really did nothing to address the issue. It wasn't till I was going through separation and divorce at age 36 that I started treating my self seriously -- with medication and therapy at a licensed psychologist. Both were very helpful, though it did take some time to deal with the many issues and to find the best medication for me. All of this continued with much success for some years until I discovered at age 41 that I have CMT1A. This, of course, brought on its own emotional issues to deal with -- but also provided a great deal of understanding and relief. Part of that relief stems from realizing the interplay between fatigue and depression -- and how it is, as you wrote, very difficult to tell which comes first. The answer, I think, is that it largely doesn't matter. It IS important, though, to interrupt the cycle, address both issues with knowledge, wisdom, and professional help -- and start reversing the downward spiral. For me, the most recent step in this journey came about a year ago when I finally succeeded in convincing my family doctor that I should have a sleep study done. I've always had some difficulty sleeping but it had gotten much worse when my divorce was in process. As it turns out, I have 3 scientifically diagnosed sleep disorders: 1. Narcolepsy 2. Moderate Sleep Apnea 3. Bruxism (teeth grinding). The picture certainly became more complex, but it also became more clear. For me the combination of: A.(undiagnosed) depression, B. (undiagnosed) CMT, and C. (undiagnosed) multiple sleep disorders for most of my 44 years have most certainly contributed -- in unhealthy ways -- to each other. They also have all combined to manifest themselves in my body, mind, and spirit as depression, fatigue, tremors, weakness, irritability, chronic pain of varying degrees, under-achievment, frayed relationships, frustration, sexual dysfunction and occasionally, anger. That's more than enough to make most people depressed, I think! The good news is that as I have identified and dealt with all of these issues, I see progress. No, CMT progession has not been reversed (though there is good reason to hope for that as we have all recently been reading). But with careful consultation with physicians who take me seriously, educating myself as much as I am able, and listening to what my body is trying to tell me, I am clearly making progress. And despite the difficult things I listed above, I DO enjoy my life: I have fulfilling relationships, am employed full-time in work I enjoy, am physically active working on my house, canoeing, dog-training, etc. A word or two about apnea. None of us can live (at least for very long) without water, food and sleep. Even the most healthy people need to have good sleep. People with chronic diseases like us have an even greater need for good sleep. Any lack of oxygen intake -- besides interrupting your sleep -- also contributes greatly to fatigue, depression and pain, among other things. My case of Obstructive Sleep Apnea (OSA) is a moderate one. A few months ago I was fitted with a customized device to wear in my mouth when asleep. This type of device is called by various names: madibular repositioning device, Silencer, adjustable lower jaw device, etc. It has been shown to be quite successful on many people with mild to moderate cases of OSA. I have had a definite improvement in my sleep, pain and fatigue issues since I started wearing this device. One of the reasons it is so helpful for many people is that it is more likely to be used consistently than CPAP machines (for obvious reasons). Unfortunately, it is not shown to be helpful with severe cases of OSA. It sounds to me as if your case IS severe. Oxygen levels as low as 35% are dangerous. The CPAP machine, adjusted properly AND WORN CONSISTENLY can literally be a life-saver for you. Weight loss can only help, as well. If you haven't already, seek guidance on diet and moderate excercise. Don't over-do the excercise. You wondered if CMT has anything to do with OSA. My best guess is that most medical professionals would say a direct physiological link is unlikely. In rare cases, CMT can affect the phrenic nerve which operates the diaphram, which in turn affects breathing. OSA itself, to my knowledge, doesn't have to do with the diaphram, though. Apnea and CMT CAN be related in the way you described in your posting about lowering your activity level because of CMT, and gaining weight. And, of course, not sleeping well reduces your energy level and exacerbates your CMT symptoms. All of this brings me back to what I wrote earlier: Keep paying attention to your body; address each issue the best way you know; and keep at it as best you can. Also; Keep wearing the CPAP machine! Oh, and most importantly: Give yourself a break! Regularly. Best wishes, .. Mark T Fulton " In a full heart there is room for everything, and in an empty heart there is room for nothing. " Porchia Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.