showers, baths, washing hair
 

hi, do a lot of you with MG struggle with washing hair and batheing? I think a combination of the heat and messing with my head bothers me, really hurts neck, sometimes for 10 days after can feel worse.....so I dont wash hair often and fortunately it doesnt look too bad. I take shallow baths or mini showers lukewarm more frequently w/out the hair washing. still trying to figure out if some of these sx I thought were CFS and stenosis could also be MG.

I have issues with showering and washing my hair. It is both the heat and the holding my arms above my head. I have a shower chair and take very quick lukewarm showers. I wash my hair twice a week. I make sure it is about 1 hr after mestinon so I am the strongest. I wash my hair in the shower on a bath chair with lukewarm water. Even so I am short of breathe for an hour or more after washing my hair and very fatiqued. I have not figured out a way to ease this process anymore. Sorry you are having the same issue.

Someone suggested to me that I should have my teenage daughter help me by washing my hair in the sink with the sink hose. I never laughed so hard. My teenage daughter help me!!! I am still chuckling.

good luck
kathie

yes... I have a hard time with them as well!! Before IVIG, not only could I barely stand up that long, hold my hands to my head (my muscles would burn SOOO badly with fatigue), much less shave my legs/or hold my razor.. but the heat really did me in.. I'd have to lay on the floor right out of the shower for about 15 minutes or so, I just felt melted.. now with IVIG i'm much better, but still feel pretty weak after a shower if it's too warm especially! I can also blow dry my hair now (I couldn't even comb my hair by myself before IVIG)..

thanks you guys for sharing

its odd to me that physicians don't test more people dx with CFS or fibromyalgia for MG
Maybe info about MG new, was it relatively recently that they considered milder cases and not the most severe for testing? my observation in the past with medicine seems to be unless you show up bleeding or big tumor sticking out they prefer to recommend relaxation or something ;)

It's hard for me to wash my hair. I prop my elbow against the shower wall to keep my arm up. I take a shower in the morning because my muscles work better at that time. I hope you find a doctor who will test you for MG.

I'm the same way. I put it off as long as I can. It drains all my energy.

I had problems with showering, brushing and tying back/up my hair when my arms, shoulders and neck were at their weakest.

Only once or twice did I start to feel weak or just "icky" (as I call it heh), after a warm shower. It doesn't happen to me too often.

This is an excellent question.
But, if you look at the history of CFS, you will realize that this diagnosis was "made up" for patients with myasthenia-like symptoms and normal tests.

It was a well-intentioned psychiatrist, http://rg.kcl.ac.uk/staffprofiles/st...le.php?pid=932 who tried to find the way to help those patients who were referred to him by frustrated neurologists, but (like happens many times) found the way to help himself instead.

In fact his land-mark paper (with numerous methodological problems) comparing MG patients to CFS patients is one of the most cited.

i have often marveled at how similar the symptoms of CFS and fibromyalgia are to diseases like MG and lupus. Almost all the symptoms listed for these 2 diseases, I have. The only missing symptoms I see are the sensitivity to heat and sun. I wonder how many of these patients might really be MG, Lupus or another autoimmune disease. I wonder if there was ever any study trying mestinon or immuno suppresant on theses patients to look for improvement or to test this group of patients for antibodies.

kathie

Hi,
I have not been diagnose with M.G but these symptoms sound a lot like what I go through. I have been diagnosed with muscle damage from a car accident so maybe it is similar in the way that I have total muscle weakness. I also have a very hard time washing my hair and withstanding the heat of the water. I also get out and lie on the floor breathing hard and waiting to recover from feeling "melted" . How do they test for this problem? I have noticed a lot of the things you guys talk about are the same for me. Can you guys tell me what the main indicators, symptoms are of this problem? How did you get a diagnosis? I have been diagnosed with chronic pain but you would think hot water would make muscle problems feel better. Taking a bath is like torture for me. And I have a hard time using a hair brush, blow dryer, tooth brush, fork etc. How do they treat this muscle weakness? What are the side effects?
Thanks for the information you guys. Sorry for getting off track on your thread.
Brain