Muscle Pain
 

I've been following the forum for awhile, and muscle pain doesn't seem to be a frequent topic. Everyone gets sore muscles from time to time, and I'm sure MGer's are no exception, but it doesn't appear to be a prominent feature of this disease based on discussion topics. Is that a fair assessment, or no?

If I use my muscles when I'm weak, I will have terrible cramps and pain and bulging muscle knots for several days. I get the sense that in MG if you push yourself too hard, first of all - you just can't overdo it as much as maybe I can because your body will completely quit on you, and second, it would make you weaker over the next few days. Please describe what you experience, and set me straight!:)

Thanks!
Tatia (undiagnosed)

I can tell you my experience. I am currently in a fairly weak state but being a Type A I could not resist pulling a few weeds in one of my flowerbeds. I was on my riding mower and saw the weeds and decided to pull them up. I got off of the mower and took maybe 5 min. of pulling by just bending over. The next day my hamstring muscles hurt so bad I could barely walk. I also had terrible cramps in my feet and ankles. It took me a while to figure out what had calls this and then I realized what I had done the previous day. So I now realize what I do one day will affect me very much the next day. It took two days of rest before my muscles recovered.
Mike

Tatia, I have to take Tylenol EVERY night of my life! My legs cramp ALL THE TIME!! I have done this for a couple of years before my diagnosis -- so, I'm confident it is MG. I try NOT to "abuse" the Tylenol (I take the 8-hour extended dose) -- so, one night, I'll take ONE and the next night I'll take TWO and then the next night ONE.......

I also have muscle pain in my neck and shoulders quite often -- especially when I'm in an exacerbation -- I'm coming OUT of one right now. I'm constantly moving my head right and left, up and down, moving my shoulders up and down -- like I'm trying to WORK out the pain. It doesn't get RID of the soreness -- but, I shudder to think how bad it would be IF I didn't even TRY! You ought to HEAR all of the POPPING noises -- guess my tendons aren't holding all that well anymore. Muscles, tendons, ligaments get loose, from what I understand, with MG.

My doc and I have talked a lot about exercise -- and he firmly believes that I need to keep my muscles in as good a shape as POSSIBLE. Everytime I go into an exacerbation, I lose muscle mass. Yeah, I know that with MG this is just "give or take". I walk when I can -- and LISTEN to my body. On days that I don't feel right -- I SIT. MG is a weird disorder. But, I'm determined NOT to end up in a wheelchair -- my doc mentioned the possibility once. If it is within my power.....................not gonna happen. I'm hard-headed. :D

Yeah, muscle pain is not an "official symptom" :rolleyes: I suspect this is because you cannot feel the actual attack on the neuro-muscular junction as there are no pain receptors there but it certainly seems to be a physiological symptom to me.

There are about 630 muscles in your body. There are 13 muscles in a leg. If, like me, your smaller muscles are affected first then the others have to compensate and so they get worked harder and a hard worked muscle gets sore.

I know my left side is effected worse by the MG and my left side shoulder, back & neck certainly feel more sore more frequently than my right side.

I was in the recliner watching TV one evening last week wondering what on earth I had done to make my neck (and to a lesser extent my shoulder) ache/hurt so darn much. (It couldn't have been the little bit of spring gardening earlier in the day, right?) But honestly, my head felt like it weighed a hundred pounds - - to the point where I put a cushion under my chin to try to get some relief.

With no improvement, I decided to try a booster dose of Mestinon. Voila - - about a half hour later, my neck was 100% fine. So yeah - I very much believe that weak muscles can cause soreness and pain.

I was diagnosed for with MG almost 4 yrs. ago but I have had lower back pain for about 9 yrs. (When I took a fall.)

About 9 months ago the pain became much more severe and my leg muscles, hips and buttocks had become painful and with every step my pain became more severe. (Excruciating) A MRI showed mild to moderate spinal stenosis at L4-L5 and I had steroid epidural injections. They really helped a lot but my back is still painful and so are my leg muscles, hips and buttocks and although not as much, it still gets worse when walking or on my feet for any length of time.

Medical websites explain that exercises that strengthen your back and core muscles can reduce the pain of stenosis and the pain Dr. that did the epidurals agrees

Now here’s the kicker.

The same Dr. that did the epidurals agrees BUT, he also believes that the weakening of these muscles will not cause more pain. I asked him how he comes to that conclusion and he can’t explain. Go figure, I can’t.

Even though he has helped me with my pain, I have an appointment with another pain Dr. next month just to ask some questions and I am hoping he will have more than 2 minutes for me and maybe answer some other questions about how MG can have an indirect effect on pain.

Tony

Skeletal Muscles have several essential roles-

1.movement (of limbs, torso etc.).

2. stabilization of tendons, ligaments and joints.

3. facilitation of partially controlled functions such as swallowing, breathing etc.


It is important to understand those physiological roles in order to understand what happens when there is muscle dysfunction, and to prevent secondary damage.

Impairment of movement is the easiest to understand.

But, muscle weakness also leads to strain on tendons and joints. This will take more time to be apparent and hence harder to connect with the weakness of the muscles. Sitting in a chair which is not well supported will lead to pain in the back and the neck due to strain on the vertebrae. walking when the muscles are weak can lead to strain on the knee and hip, even picking up something can lead to pain in the shoulder etc.
joints and ligaments have pain receptors because this is the way we know we have over-strained them. This kind of pain means-stop, improve your muscle strength or get better support before you go on.

Using a wheelchair (like you would use a car) to travel a longer distance, enables you to get there, while preserving your strength and avoiding putting too much strain on your body.
A healthy person (even if he/she is a trained athlete) who has a 30 minute drive to get to work, will quite likely use a car to get there and not run to work every morning, even if he/she can physically do it.
By the same token it makes no sense to struggle walking 100 meters and get there hardly able to move talk of breath, even if you can physically do it.

Because swallowing and breathing are only partially under our control and because both require co-ordination of multiple muscles, people do not always realize that they have such difficulties.

People may just feel they have had enough to eat, when their chewing and swallowing muscles get weak, or that they are tired, irritated, foggy, when their breathing muscles get weak.

The muscles in our limbs have sensors that tell us their position, their force etc. We do not have similar sensors in our swallowing and respiratory muscles.

Finally, pain in the muscles is usually the result of production of lactate and inflammation when the muscle has reached its threshold. It is not surprising that when you reach this threshold with "normal" everyday activities, you would have such pain in your muscles that a normal person would have after a full work-out in the gym.

All that being said, there are some muscle diseases in which pain is a prominent feature, and not the result of weakness. In those diseases you would usually (but not always) see elevated levels of muscle enzymes (such as CPK) in the serum, because they are accompanied by muscle damage and not only metabolic dysfunction.

I personally think there are many disease that can effect muscle function and endurance, which are not (yet) recognized. I believe many of those patients are blown off as suffering from " emotional problems" because those diseases are very hard to understand, and it is easy to think that such a patient is not putting enough effort and can easily do more.

Tired, irritated, foggy....I didn't make the connection to breathing difficulties, but it makes sense. I get very absentminded and foggy which isn't like me. It made it very hard to keep working as a lawyer before I "retired".

I am not diagnosed with MG..but do have some myasthenic symptoms- however i do have muscle tenderness - when my kids climb on me my muscles are sore and if i over exert myself I am VERY sore the next day (lactic acid build up - like I worked out quite a bit the day before). even my eye muscles are sore and tired by the end of the day- if i move my eyes in any direction at night they hurt!

Thanks for all the replies. So apparently this is not a helpful sign in helping me think "yes" or "no" for MG.

Although, I did find an adult mitochondrial disease forum this week, and it seems like it could be a good fit for me.

Tatia

Geode- I don't know much about mitochondrial diseases, but I have had a few people mention that to me.. that it can involve drooping eyelids too.. what is the treatment for it, if there is one? prognosis etc? hope you find answers soon!

I am still in the early learning phases myself. I've come across it from time to time, but doctors have been more reluctant to consider that possibility than even MG and HKPP. I've been told by doctors: "You have to get it as a child" (false) "It doesn't fluctuate so much like yours does" (false) and "This just doesn't look like mito, it can't be" (based on what???) Because there's not really a good treatment and diagnosis often involves a muscle biopsy, I guess I've buried my head in the sand on this diagnosis. The subject just came up on the HKPP forum again, with a link shared to a site I'd never seen, so have been revisiting this possibility.

From what I've seen so far, it is mostly "managed" with vitamin and cofactor therapy, symptomatic treatment, and lifestyle modifications. Although, based on the video that Alice shared (thanks Alice!), I think there is potential for more than that. If you want to read up on it, check out mitoaction.org and umdf.org


Some key points I've learned in the last week or so:

They used to think mito affected about 1 in 50,000 to 100,000 people, but now they say the incidence is 1 in every 2-4,000. One source says that 1 in every 200 people carries a genetic mutation that has the potential to develop into mito disease.

All cells except red blood cells have mitochondria, and mito disease can affect many different body systems. One source says, "Think mito disease when 3 or more organ systems are involved." I have tachycardia which the cardiologist believes is POTS but we're doing a 30-day Holter monitor just to be sure, GI symptoms, muscle weakness, and brain issues with motor control/spasms.

As I've been reading through this MG forum, there's been a couple of people with POTS. One person said she has POTS instead of MG; one response to that was that POTS wouldn't cause ptosis. Maybe not, but Mito can cause both POTS and ptosis (as well as other weakness resembling MG). Additionally, at least one form of catecholamine imbalance can cause both dysautonomia and ptosis. How many things can go wrong in a human body? It's mind boggling that anyone's healthy.

Tatia, Have you done research on the mitochondria themselves? Look up the Krebs Cycle. If there is a "kink" in this cycle, it does not work well.

Since you get worse after you eat (is that correct?), I was wondering if your glucose does not get broken down properly at that cellular level. I did a bunch of research ions ago and it showed that some MGers do have mito issues. Search PubMed for that.

This is a great video of what happens in the mitochondrion.

http://highered.mcgraw-hill.com/site...__quiz_1_.html

So if the Krebs Cycle doesn't work well, energy is not produced. That energy is necessary for every single part of the body.

Has anyone done the lactate and pyruvate blood tests for you?

A lot of doctors don't know about this in detail. You would probably have to go to Mayo for a muscle biopsy. They're one of the few places who can look for it well.

Have you had your vitamin D checked? That can cause muscle pain too.

Have you tried seeing how you do on a liquid diet? Have you tried protein shakes, like rice protein, to see if it makes any difference?

If you do have any kind of metabolic issue, you should try to stay away from "fake" sugars or sugars in general. Also, additives tend to mess with the Krebs Cycle too (i.e., MSG). If your body is having a hard time breaking food down, for whatever reason, try not to eat foods like beef, which is very hard to digest. You may need to rethink your entire diet! ;)

Keep asking questions. Sometimes the harder to figure out diseases are when doctors give up. ;)

:hug:
Annie

http://www.uic.edu/classes/bios/bios.../krebsfull.htm

Thank you so much, Annie, for the links and ideas. I am still in the process of looking up all this information you presented and trying to master it and make sense of it. Sometimes you don't know what it is that you don't know; so you don't know how to look for it. Therefore, I always love it when you introduce new concepts to me so I can keep learning.

The one thing I do know about what you said is regarding the sugar. Terrible confession, you'll cringe, but I used to eat a Sausage McGriddle every morning for breakfast. After learning about periodic paralysis, I started eating breakfasts much lower in carbs, and it made a big improvement in reducing my morning attacks. Although, I often follow a low-carb diet for weight loss and it doesn't really make a difference in the overall scheme of my symptoms.

Tatia

oops P.S. I tried a rice protein powder drink from the health food store once, and went into one of my more severe attacks. I was a little afraid to try it again after that.

"Health food" is not healthy for everybody, just like exercise is not beneficial (and can even be detrimental) for some.

It does sound like you have a complex (possibly not yet recognized) metabolic abnormality.

Possibly a properly done cardiorespiratory stress test, could give at least a clue to the nature of the problem.