I have done some reading of old posts here and a few searches but have come up more or less empty, or perhaps inconclusive would be a better word, regarding pain.

I am newly diagnosed with MG and, from what I am reading, am beginning to think my pain is caused by something else. To the point, I have chronic pain in my back that I would, on any given day, happily trade for a migraine.

Originally, I looked at my symptoms and when I was diagnosed assumed that MG was responsible for all my symptoms, but I'm seeing very few references to pain that can't be attributed to something else. Is such pain unrelated to MG?

I experience a lot of back pain due to a herniated disk. I've been told the pain is NOT from the rupture but rather from my back muscles having to work extra hard to keep my spine 'in line.' The extra work causes muscles spasms, which are painful. My pain significantly decreased when I started Mestinon. I assume this is because my back muscles were then more able to do their job. The pain in my case is not from MG itself but from a kind of complication of MG, i.e. weak muscles. I hope this makes sense.

I have a lot of muscle pain from MG every day. If you force your body to move when it is weak it is painful. Like the pain of over exertion but you are hardly moving.

kathie

Angell, Can you define the exact kind of pain you're having? Is it only your back? Is it lower, mid, or upper back? A B12 deficiency can cause back pain, too.

Is it sharp, dull, shooting, localized, generalized, in a joint, in a muscle, etc.

When muscles are overused, such as with marathon runners, muscles can cramp up and spasm. There's definitely pain involved with that. They can remain sore for hours or days.

With MG, that cramping or spasming or pain simply happens a lot sooner, due to how weak our muscles already are. But it's a secondary symptom of MG, not a primary one.

Pain isn't a simple issue and can also be caused by a vitamin D deficiency, electrolyte or fluid imbalance, hormone imbalance, etc.

Don't assume that it's caused by MG. Try to write down when it happens, and any other clues you can in an attempt to figure it out. And then, of course, talk to your primary doctor about it.

Annie

Yes. The type of debilitating pain that I am referring to is only in my back. It is the upper half and radiates outward from my spine and through the muscles. It is probably work noting that I regularly lose 2-2.5 inches (5-6.5cm) in height daily. My wife will step on my back and I'll gain the height back and, if it hasn't been too long with the pain at maximum, it'll relieve the pressure as well and the pain will subside. I do not have a B-12 deficiency - or any other (referring to D as you pointed out below). My lab work came back today testing for just that.

It is easy to identify when it happens because it is every day, all day. Better in the morning and worse at night which I have always assumed was because I was not fighting gravity all night.

If any of that didn't make sense...I'm really in the middle of it at the moment and the pain is winning.

What was your exact B12 number? I can't help but ask.

Have you tried going to a good physical therapist? There might be things they can do to help you. I've done it and I was very grateful for what they did and for the tips to keep back pain from happening again. They thoroughly assess what is going on.

Sometimes a neurologist can refer you to a PT place that understands neuromuscular diseases. The neuro I see has a PT dept. within their offices.

Annie

Hi Annie! I don't have it but I will. I had the test done and was told that everything was good but didn't ask for specifics. That's said, I'm going back to the neurologist next week and will ask.

PT is out of the question...it's a money thing.

Thanks Annie, I have read up on B12, and whilst it does not explain everything, I can see that it might be relevant. I shall be asking my doctor if they tested for B12 when they supposedly checked everything. And I will ask for details of exactly what the number is.

Angell, I'm sorry that PT isn't affordable for you. You really need to be careful about that stepping on the back thing, though!

If you or your wife can manually check your back for any sore areas, then you might be able to do your own PT. If you get a long-handled electric massager, you can kneed out the areas that are sore. That's basically one thing PT does.

Strengthening any core/stomach muscles will help, too.

Juliejayne, Yes, the actual B12 # is very important. So many people are deficient in it. Don't accept that a number in the 300s to 600s is okay. All deficiencies begin at higher levels and go down from there!

Angell, I hope you can find some relief from your pain.

Annie