[sugrkiss]

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

[AnnieB3]

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

[sugrkiss]

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

[Maxwell'sMom]

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

[AnnieB3]

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.

[Maxwell'sMom]

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