Pain Note

Jul 18, 2009 - 5 comments

For the past couple of days I've been noticing that my unusual weakness is back.  Not the normal level of weakness that I experience with my Dysautonomia, but a weakness more similar to what I experienced last December.  Thankfully, I am still able to fully use my hands/arms, though I am having difficulty with my stability while sitting.  I feel as if I have to lift my shoulders to inhale, and use odd muscles to keep myself upright.  It's exhausting...

I'll admit I've been slacking off on my Physical Therapy.  I don't actually go to PT anymore, but I still have a list of daily exercises.  The problem is, I don't really do them daily.  I do them almost weekly, but I tend to skip approximately one week each month.  For the past two weeks I've been doing them again though.  So I'm hoping that makes some difference.

I just can't think of what could be going on...  I really thought I was past this!  I'm on a different anti-epileptic medication than I was on back in Decembeter.  (I was on Topamax, and now I'm on Zonegran.)  I was having all kinds of problems with Topamax, but I've had almost no problems to speak of with the Zonegran.  I'm on Prednisone now, which I wasn't on when the weakness worsened back in December.  Though I did start Prednisone after stopping the Topamax.  I've been on/off Prednisone several times in between without problems, and I'll be off by the end of this week.

I'm also quite confident that I don't have Myasthenia Gravis.  I wasn't tested for it, but based on the fact that I am taking a medication that is normally used to treat MG, (I'm using Pyridostigmine off-label for Dysautonomia), and it's happening again, that in my mind is enough to eliminate it as a possibility.  Of course, I'm not at all a doctor, and I don't know much at all about Autoimmune Disorders.  What I do know is that I wasn't on that medication in December, and I am on it now.  What else has changed?  The weather...  Is there anything even remotely similar about December and July?  Perhaps I'm being too analytical.

At any rate, I'm hoping that doing my PT exercises will help me to feel more comfortable again.

Hally's Pain Tracker
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Avatar universal
by stellas2, Aug 26, 2009
hi, hally-i´ve read with interest your pain tracker. it´s very interesting to me that someone else reports of unusually weak periods of time. i also have such symptoms:extreme tired,weak,therefore depressed and an increase of´pain.When it get´s very bad a can´t even hold my phone or an pen. do you kwow where this condition is coming from?i`m not frim in handling this site -hope i´m not making to many mistakes...

492869 tn?1285018933
by halbashes, Aug 26, 2009
The first time I experienced the weakness was related to a drug called Topamax.  I'm not certain why it happened a second time, but it was much less severe.  I started my physical therapy exercises again, and much of the unusual weakness seems to have disappeared.

Do you know what is causing your episodes of weakness?  You may want to ask your doctor about Myasthenia Gravis.  I don't believe that's what I have, but I know it can cause extreme weakness.

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by jimi1822, Aug 26, 2009
Good Luck and GOD Bless you with your PT exercises. Halbashes, please try to be more consistent with them as exercising produces endorphines and will help with pain management.

                                                                                                         Prayers, Blessings, Love and light...

                                                                                                                                            <3 jimi (little wing =0) <3

Avatar universal
by Weney3777, Aug 26, 2009
Is your weakness also accompanied by pain? Just curious. Mine is. When I went to PT it didn't help. I was too weak even to perform the simple exercises. I was winded and fatigued before getting on the bicycle. What did help me, though, were massages.

492869 tn?1285018933
by halbashes, Aug 26, 2009
I don't quite do that level of exercise.  I guess it's a little different since I have suspected EDS.  My joints are very loose, so I need to strengthen the muscles around my loose joints.  I wasn't too much pushed, or forced into exercises that were too difficult for me to complete.  The physical therapy I did wasn't terribly difficult actually.  It was fun!  :)

This journal was from last month, and since then I've been doing my exercises much more regularly.  I'm feeling a bit better than I did when I wrote this entry.  Basically, the point of my physical therapy exercises is to strengthen upper body muscles so that I am able to sit up without toppling over.  (My shoulders, and neck are very mobile.)

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