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Steroid insomnia

Posted Jan 11 2009 5:26pm 1 Comment
One of the biggest side effects of IV steroid treatment for me is the steroid induced insomnia. It would be great productive time around the house if I had the energy and the hip/pelvis felt better! So, I try to be productive by keeping up with the latest MS research on line. As a matter of fact, during tonights reading I read a new research report that came out this week. The research showed promise with using stem cells with mice to regenerate myelin sheaths. Way to early to tell long term success, but it would be wonderful. Destruction of the myelin sheath is what causes the "symptoms" of MS. If the myelin sheaths can't/don't regenerate because of the severity of damage to them caused during an exacerbation, then the damage and "symptoms" are permanent. That's what ultimately leads to disability. If they can find a way to stimulate regeneration of the myelin sheaths the potential for total reversal of permanent damage and disability becomes a real possibility. Of course really finding out the absolute cause of MS would lead to the ultimate cure....prevention. Currently, MS is treated symptomatically and through the use of drugs that attempt to modify a persons immune system/response. Thereby attempting to lessen the occurrence of the actual exacerbation's while treating the "symptoms" that an MS patient already has. Such as muscle spasms, balance issues, bladder and bowel problems as well as cognitive and visual problems, among others. A person can have a range of health and physical challenges related to MS. Some patient's have one symptom, while others have just about all of them. The severity can range for a mild "inconvenience" to life altering. Generally, I'm pretty lucky. On a day to day basis, between exacerbation's, unless you knew, you wouldn't know I have MS. My balance may be a tad "off" but that's easy to excuse by saying, "I'm just tired". (Which is usually TRUE). If my speech is off, that's even easier to pass off as non-MS related as a deaf person! LOL. The biggest challenge for me on a day to day basis is the "Train Wreck Fatigue" that MS brings. This fatigue is indescribable. You can being feeling good with an energy level that is "normal" for you. Then literally the next second you are absolutely exhausted. I have actually had to leave a restaurant before eating my food because between ordering and eating it hit. When it hits you can't function. You have no choice but to sleep. The fatigue is one of the main reasons people with MS end up being unable to work. Fortunately, I haven't had too many encounters with "Train Wreck Fatigue", but Mark (my husband), can tell you, it's very real and your body gives you absolutely no say in the matter. Of course, the pace I keep in my life with the job I have and the hours likely helps contribute to it. However, I've also been a firm believer that staying active helps keep MS under control. It also keeps my mind OFF the MS and on LIVING. I made a conscious decision years ago to live my LIFE and NOT live MS.
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I like the "train wreck fatigue"...it is a very good description!  Some days it hits  fast and furious-I could cry. Once it hit me around 3:30 in the afternoon.  The kids get home from school around then, and so does hubby when he is on days.  I work from home (bonus!) and my boss called with a panic situation 15 minutes earlier...I had to re-do a mortgage application and work miracles on some guys bad credit in an 40 minute timeframe.  The kids burst thru the door-along with a couple of friends they 'forgot' to mention were coming (what ever happened to asking??), hubby called to say he was doing overtime, and one of the parents of kids' friends showed up yelling her head off at her son.  Somewhere in the middle of her tirade, I felt the crash, and had to sit.  She looked at me long enough to whisper very loudly, 'and just look at that-she's a drunk or an addict!'  With my MS accent, I clearly slurred an indignant, "amm mmot".  I have never seen that kid again-or his charming mother :)

I think I will borrow your phrase, if you don't mind...'train wreck' would be a perfect code word to use with my family when others are around :)

Ann

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