[BackwardPawn]

Does anyone else suffer from sever pain in your back muscles. I was thinking this was pain from overuse/myasthenia, but it seems to be helped by muscle relaxants, while myasthenia symptoms get worse.

I've been doing some research and the two symptoms I have that don't fit myasthenia are this back pain, and myoclonic jerks. Those do, however, fit stiff man syndrome, which is also being linked to the thymus gland and (at least indirectly) to myasthenia. At this point, all I want is some relief as the back pain keeps me awake and is torture when sitting at work (despite the expensive chair they bought me). I guess I'm just wondering if this sounds like myasthenia, or if I should ask my neurologist to look test for the SMS antibodies/investigate this pain further. It doesn't seem to get much better with rest like the MG symptoms do, but antispasmodics help some and that seems counter-intuitive for MG.

Thanks for any help you all can provide.

-Jeff

[AnnieB3]

Jeff, I have had severe back pain from MG. I can now head it off, however.

It may not be that but it could be. When muscles get weak, especially the core muscles, it can thrown off the back. Also, muscles can cramp up when they weaken too. You can get into a vicious cycle of weakness, more pain, more weakness, etc.

I think what you might want to ask your neuro for is an assessment by a physical therapist. Now, don't go and pooh-pooh that! They can do absolute wonders for MGers. It helps if the PT knows about neuromuscular disorders.

Have you felt around at your muscles from your back to your hips? Are there any really sore areas? If so, your muscles may be so bad that they need PT.

Of course muscle relaxants would help with temporary relief of knotted up muscles and would most definitely make MG worse!

If your muscles are knotted up, they need massage, ultrasound heat and basic exercises to keep your core muscles in tune.

Muscle relaxants could send you into an MG crisis. You don't need that. Just get in to see your neuro and get his advice. I hope you can figure out something that helps. Kneading the muscle by yourself, if you find a sore spot, does help.

Annie

[BackwardPawn]

Originally Posted by AnnieB3

Jeff, I have had severe back pain from MG. I can now head it off, however.

It may not be that but it could be. When muscles get weak, especially the core muscles, it can thrown off the back. Also, muscles can cramp up when they weaken too. You can get into a vicious cycle of weakness, more pain, more weakness, etc.

I think what you might want to ask your neuro for is an assessment by a physical therapist. Now, don't go and pooh-pooh that! They can do absolute wonders for MGers. It helps if the PT knows about neuromuscular disorders.

Have you felt around at your muscles from your back to your hips? Are there any really sore areas? If so, your muscles may be so bad that they need PT.

Of course muscle relaxants would help with temporary relief of knotted up muscles and would most definitely make MG worse!

If your muscles are knotted up, they need massage, ultrasound heat and basic exercises to keep your core muscles in tune.

Muscle relaxants could send you into an MG crisis. You don't need that. Just get in to see your neuro and get his advice. I hope you can figure out something that helps. Kneading the muscle by yourself, if you find a sore spot, does help.

Annie

Hi Annie,

I've actually been going to physical therapy for the past few months. I just recently stopped as I'm burning through my sessions for the year and may need to save some after for after surgery. Its improved my strength some, but done very little for my pain. They've been doing massage and ultrasound and within a few hours of the treatment, all the tightness and pain is back. I'm hoping the thymectomy will help improve the situation. I meet with the surgeon in a couple weeks so hopefully they'll set a date and I can finally get this done.

Jeff

[AnnieB3]

Jeff, They might be able to code the sessions differently in order for you to have more! Ask them to show you how to do some of what they're doing yourself. They might be able to recommend a long handled massager that you can use at home to get the kinks out.

What drugs are you on? Are you on steroids? You can get a myopathy from steroids. Also, get your vitamin D and B12 checked. They are two of the most common vitamin deficiencies. Vitamin D def. can cause muscle pain too. So can electrolyte imbalances.

Good luck!

Annie

[BackwardPawn]

Originally Posted by AnnieB3

Jeff, They might be able to code the sessions differently in order for you to have more! Ask them to show you how to do some of what they're doing yourself. They might be able to recommend a long handled massager that you can use at home to get the kinks out.

What drugs are you on? Are you on steroids? You can get a myopathy from steroids. Also, get your vitamin D and B12 checked. They are two of the most common vitamin deficiencies. Vitamin D def. can cause muscle pain too. So can electrolyte imbalances.

Good luck!

Annie

For the myasthenia I'm on prednisone, cellcept, and mestinon. But then I'm on a whole bunch of others that may be making the myasthenia worse. I'm taking painkillers for the back pain, neurontin and klonopin for the myoclonus.

I've also got a pinched nerve in my neck/shoulder area which is why I was prescribed the zanaflex. I was a little surprised that it helped the back pain, too, as I thought that was from weakness. I've been doing the home exercises, but I may end up going back for another round of therapy...I was just hoping to wait until after the thymectomy.

[AnnieB3]

Jeff, Drugs are useful but too many combos of them can actually cause MORE pain. The more pain meds you use, the higher the dose you need because the body gets used to them.

I think you should go to a pain specialist. Drugs aren't always the answer. Again, there might be other things like deficiencies that are adding to your pain.

Also, Neurontin has been known to make MG worse and, in some instances, CAUSE it. So you need to let your neuro know that too.

Do you have a good internist? If not, get one. They can evaluate this entire situation and look for other causes for you. There's probably more than MG going on here.

Good luck.

Annie

[BackwardPawn]

Originally Posted by AnnieB3

Jeff, Drugs are useful but too many combos of them can actually cause MORE pain. The more pain meds you use, the higher the dose you need because the body gets used to them.

I think you should go to a pain specialist. Drugs aren't always the answer. Again, there might be other things like deficiencies that are adding to your pain.

Also, Neurontin has been known to make MG worse and, in some instances, CAUSE it. So you need to let your neuro know that too.

Do you have a good internist? If not, get one. They can evaluate this entire situation and look for other causes for you. There's probably more than MG going on here.

Good luck.

Annie

I just had a visit with my neurologist and wanted to provide an update. She said that the back pain/stiffness could be MG related, but is probably due to another condition. In addition, she thinks the pinched nerve is due to the muscle tension. When I mentioned SPS, she said she may have me tested for the GAD antibodies as its also an autoimmune condition and could be playing a role.

At this point, though, she can't treat the muscle tightness aggressively without making the MG worse. As a result, we're going to go forward with the thymectomy and hope it improves my overall condition.

In the meantime, she said to stay on the neurontin for pain (and actually increased it a bit as she felt it was doing more good than harm), and said I can use the zanaflex sparingly, as it is helping but she's afraid of it making me weaker while I'm on the lower dose of Prednisone.

Hopefully the thymectomy improves everything, as I did read a case study where SPS resoved after removal of a thymoma, but I don't want to get my hopes up too high. At this point, I'm hoping that the MG symptoms improve to the point that they can treat whatever else is also going on.