So since quitting the vicoden from my surgery, I have been having so much pain everynight. When I go to bed my legs ache so bad that after about an hour of laying there, I have to get up and take Tylenol. It seems to work and I get to sleep....but I'm wondering why the pain EVERY single night, and why it seems to get worse the longer I lay there? Anybody dealing with this???Hope everybody is feeling stong today...

Thank you,
Jessica

Jessica, Hi, you haven't been around for awhile. Hope you're doing okay.

Have you spoken to your primary doctor or neurologist about the pain? It does not sound like it's from MG. Is there cramping associated with the pain?

I have to wonder why, when you stop an anti-inflammatory drug, you would have pain. Do you have an inflammatory condition? I think you need to be fully evaluated by your primary doctor. I hate to say this but since you just had surgery, what if it triggered another problem with your immune system?

It's weird that the pain is only at night - or is it during the day too? Do you have pain before you go to sleep or after you start sleeping?

Are you on any other drugs?

I hope you can figure this out. A lack of sleep will only make your MG worse.

Annie

Hi Annie,
I have been pretty busy with my little one, and we have a possible move to Ohio I have been reseaching...Other than that I am doing much better than I was 2 months ago...

As to the pain, I don't notice it until night when I'm laying down...I don't have any other conditions than MG and low Thyroid, but it's more of an aching sore pain that starts at the joints (hips, knees,ankles and toes) and radiates around.....I think it starts in my joints, but it's hard to pin down the source, sometimes it feels like it's the muscles...when I wake up I feel fine. Other than the normal morning weakness and tenderness in my sternum from my surgery....

I did tell them about some pain I was having...When I start getting weak and need my next dose of Mestinon, if I use my muscles to walk or lift...when my mesti kicks in, my muscles are sore all over, like I worked the out really hard....She said that kinda goes with MG and just to take the Tylenol or Advil...Just wondering if anybody else has this kind of pain, and if it's associated with the MG?

Thank you Annie,

Jess

Hi Jess, I too was wondering if you had another autoimmune issue going on. But could it be that when you lay down, your muscles are all relaxing, and then that's when the pain comes on full force. Kind of a delayed reaction? ( I have dysautonomia, and this has happened to me, so I know it's possible)
Babies are such a blessing, but we sure can give ourselves a good physical workout with them too.
Have you tried taking a Potassium supplement. After all these years, I'm still amazed at how well that helps with muscle spasm/pain. Don't over do with them (potassium), that can be dangerous.
Write questions down, and ask your Neuro as well. He'll be able to help you.
Love Lizzie

If you look at the "essence" of what MG is, it is weakness. And that weakness should get better on Mestinon. MG is NOT about pain. You may get mad but that does not "kind of go with" MG, like your doctor said!

If it's in your lower body only, then you should look to your spine. Being on or off of Mestinon can affect the muscles surrounding your spine. Muscles are what keep your spine healthy and "in place." With weaker muscles, you can have pinching of nerves, etc. And if your bed is not the right kind of mattress for you, it can make a spine issue even worse at night.

Maybe keep a log of symptoms, when they occur, etc. And then go back and talk to your neuro.

And I would be remiss if I didn't bring up the possibility of a vitamin D or vitamin B12 deficiency.

Annie, Not that long ago, there was a study relating to the pain in MG patients. I can't remember it all, Maybe Jana will, we were all part of the same group that had posted all the info on Pain and MG.
If my memory serves me correctly, when a certains set of muscles are too weak, but other sets were strong, the weaker of the sets would cause pain. Okay,i'm not explaining this well at all.
But more and more Neuros are accepting that there is mucle /joint pain indirectly related to Myasthenia. I'm too tired tonight to find the info. But we had tons of discussions on this very subject.

Jess, this might help in letting you know you're not alone. http://ehealthforum.com/health/topic129745.html

Love Lizzie

Lizzie, I know that pain is a "secondary" issue with MG but it is not essentially a primary one. And the danger in contributing everything to MG means that something could get missed. There will always be "pain" when muscles are weak and "throw off" a spine or a shoulder or a knee.

And many MG patients are on drugs, which could also cause pain.

I'm actually angry myself right now because I feel like I'm banging my head against a wall or speaking to one. Do not assume a new symptom is MG. I'm not mad at you, Lizzie, or Jessica. It's the jumping to conclusions without even asking the right questions, doing the right tests or figuring out what is really going on that makes me crazy.

Jessica has been having infections, the pain got worse off of anti-inflammatories and we all know people with autoimmune issues can have new "problems." Do not assume anything. OR go ahead and assume it's the MG. It's your life.

Annie , I know you're not mad. I've long believed we must understand that not all things are MG, and not all weakness is MG. For myself, I think it comes from having a pitcher full of stuff going on in my body. And I can feel how one thing causes this kind of weakness, versus something else causing this, or that.
When my sugar drops too low, I instantly feel so weak that I can't lift my arms, or move. I know it's an MG symptom, but I know that it's really from my sugar dropping.
I think it's very important that someone says that "it may not be mg" often to new people. It can give them comfort.
I wasn't sure if you knew or not about the secondary pain to mg. Some don't get the pain, and don't know about it.
Soooooo are you saying you understood my explanation??????Cause I may need you to explain it to me
Love you Annie, You too Jess.
Love Lizzie

For Lizzie . I have absolutely NO way of knowing what type of pain we are talking about with Jess. I can say that IF she is lying on her BACK, I "may" have experienced a similar type of discomfort in my legs -- and I now take Tylenol (8 hour extended release) on a fairly regular basis at bedtime AND I now lay on one side or the other. My legs tend to "ache" -- I wouldn't exactly call it "pain", per se -- not like the throbbing pain of a migraine or of a burn or of a broken bone. But, this "ache" WAS enough to wake me UP from a sound sleep -- and, try as I would, I simply could not find a comfortable sleeping position. Tylenol IS always enough to ease the discomfort.


While pain is not a symptom of MG (in the book), it can be a result
of MG symptoms. Weak muscles and lost muscle communication can easily
cause bone misallignment, overuse of connected muscles, inflamation
of joints and ligaments, and general fatigue. (common scense)

Newswise — Patients with myasthenia gravis (MG), a neuromuscular
disorder primarily characterized by muscle weakness and muscle
fatigue, reported in a new survey by Penn State University
researchers that the disease impacts their quality of life.

While this finding is not totally unexpected, the fact that a
significant percentage reported experiencing pain as a result of
their illness is. "That such a large number of surveyed patients
reported pain associated with their disease," explained researcher
Dr. Milind Kothari, "is very surprising."

Kothari and fellow researcher, Dr. Kevin Scott, anticipated that most
of those surveyed would indicate that MG limits their ability to work
or perform moderately intense activities. "We were surprised, though,
to see 50% of the patients report experiencing significant pain as a
result of their illness with over a quarter reporting pain of
moderate or greater severity. Pain is not commonly associated with
this disease."

The surprising aspect of the survey results is that the patients'
physicians were generally not aware that their patients were in pain
and, consequently, failed to treat it appropriately. The authors
recommend physicians should routinely query their MG patients about
pain and decide if this warrants treatment.

Myasthenia Gravis results from an abnormal immune reaction in which
the body's natural immune defenses (i.e., antibodies) inappropriately
attack and gradually destroy certain receptors in muscles that
receive nerve impulses.

Most individuals with MG develop weakness and drooping of the
eyelids; weakness of eye muscles, resulting in double vision; and
excessive muscle fatigue following activity. In addition, in about 10
percent of cases, affected individuals may develop potentially life-
threatening complications due to severe involvement of muscles used
during breathing. Although the disorder usually becomes apparent
during adulthood, symptom onset may occur at any age.

The full survey results will be reported at the 51st annual meeting
of the American Association of Electrodiagnostic Medicine in
Savannah, Georgia, November 3-6.

The AAEM is the largest organization worldwide (approximately 5000
members) dedicated to advancing neuromuscular, musculoskeletal, and
electrodiagnostic medicine. The primary goal of the AAEM is to
increase the quality of patient care, specifically for those patients
with disorders of the central and peripheral nervous systems,
neuromuscular junction, and skeletal muscles. This is accomplished
through programs in education, research, and quality assurance. The
AAEM believes that only physicians trained in electrodiagnostic
procedures should perform needle electromyography and interpret nerve
conduction studies to assure patients receive the proper diagnosis.

http://www.newswise.com/articles/view/507934

Thanks Jana This was one of the articles about which I was thinking....I think at this point, poor Jess isn't too certain as to what is causing it either.
Well, Jess, I'm not sure if we helped ya here or not, but the most important thing to do is ask a lot of questions when you see your doctor. I'm sure he knows your body better than us.
((gentle, NON causing pain Hugs)))).
Love Lizzie