I would like to add that I've done physical labor for all of my life until 12/28/07 when I busted 5 discs in my lower spine requiring surgery. Since I have stopped the heavy labor, my pain comes more often, more severe an as I mentioned above, even after just carrying the simplest things. I believe I'm all used up an that I've pushed through every day and over worked my diseased muscles. Jan, my thyroid levels are normal. I did try to boost the dose one time to see if it made a difference and all it did was wire me out and make my heart race.

I can guarantee (and I'm sure Lois would concur) that anyone with 5 ruptured discs is going to have pain the rest of their lives. Surgery can stabilize the vertebrae somewhat and keep some of the pressure off the nerves, but it certainly won't heal the pain.

Once you have such a severe injury the myotonia will increase because nerve pain increases muscle guarding and therefore overfiring of the muscles. This uses up cholinesterase which helps repolarize and relax the muscles. Calcium can help regenerate cholinesterase enzymes and might help some with the pain. I like calcium lactate best.

Jan

Absolutely, Jan... back surgeries aren't really meant to rid the pain of ruptured and collapsed disks. By stabilizing and placing spacers, pins, rods, or other interventions, surgeons attempt to relieve and minimize further pressure on the root nerves which branch from the spinal cord, through the vertebrae, and on into the various parts and organs of the body. But even 1 herniation will mean pain to one degree or other for the rest of one's life - and 5 is quite extreme. I know that physicians do not like to admit or discuss chronic pain issues, but it would be much more helpful and honest to do so, and to prepare a person for coping with this.

Physical therapists, physiatrists (physical medicine, rehabilitation and pain management specialists), chiropractors, yoga teachers, and hypnotists, among others, can often help people learn coping mechanisms for chronic pain. I think we are uniquely equipped to cope, because we are familiar with pain issues which we are often left to deal with by our own wits from early on, since it has not been well understood. I have always lived with intermittent pain, possible in part due to my craving for hard exercise to try to make myself feel better, though I didn't know why, and partly unwillingness to coddle myself, since I was told there was nothing wrong with me, and I didn't want to be seen as a baby. So my tolerance is quite high.

I do believe that calcium and magnesium, which help to relax muscles and soothe nerves, are useful to add to the diet. (Careful, because too much magnesium can loosen bowels!) Jan - I notice you didn't mention magnesium - do you feel it is contraindicated? Heat is relaxing, so I think you might benefit from the warming pad that Jan has suggested for some people, and if you have access to a spa or jacuzzi, that might be helpful. But mostly, I find that when my pain is really gnawing at my psyche, meditative slow deep breathing helps me re-center and re-orient myself, and sort of "rise above" the pains and aches. I try to just view them as part of my bodily functions... Lois

I just found this site and of cours I don't have a lot of time right now. Just wanted to add my two cents: I too have MC and as I get older it gets much worse. I am in constant pain. I only take ibuprofen when the pain get so bad I can't sleep. Usually it takes the edge off enough for me to fall asleep. I'm sorry you are in pain but it's nice too know it's not all in my head and someone else understands.

Welcome Connie! Sorry to hear you're dealing with pain issues. This has kind of gotten to be my soapbox because so many of us suffer needlessly.

Myotonia congenita is not in itself a pain disorder. It is possible have quite a bit of inhibition of the chloride channel and even experience severe stiffness with no pain.

However most of us push against the stiffness and cause microtears in the muscles as well as stressing tendons and ligaments and that can cause pain. As a personal trainer I can assure you that the same type of pain is experienced by people working out with weights or overdoing any type of physical activity like skiing, biking, etc. Pulled muscles and soft tissue injuries can be very painful.

If your pain is noticeable when you're relaxed, then it's most likely nerve pain or inflammation and not the normal pain from stressed muscles. MC may seem to get worse as we age, but everyone notices increased pain as they age because of injuries, illnesses and metabolic issues. What really bothers me is when doctors lump it all on MC because they're too lazy to investigate the other possible causes.

In my experience the best doctors to diagnose these other sources of pain are physiatrists (usually listed in the physican pages under physical medicine and rehabilitation) and rheumatologists. A good physiatrist can do an EMG to differentiate between MC and damage from other conditions. A rheumatologist can check for autoimmune and inflammatory conditions like arthritis, lupus, fibromyalgia, etc.

Many medications can either cause or exacerbate myotonia so that needs to be considered when you feel you are getting worse. This is especially true of statin drugs for cholesterol. You may even seem worse in summer if you're exposed to pesticides and herbicides. Most of these effects are reversible, but some seem to further permanently impair the chloride channel function.

Jan

Hey Connie, sorry to hear you're in the same boat. I guess from trying to put all this info together from this forum, there's way to many gaps in order for anyone to put a finger on why we feel pain. Jan and Lois come as close to or closer to figuring this all out than any doc I've seen.With the current economic climate, they're probably going to cut what little funding there was for MC. I'll agree that Ibuprofen cuts the pain just enough to sleep most of the night. The pain is aging me I'm afraid.

Hi Connie,
This is the place to find out everything you ever wanted to know about MC. Jan is the expert. Between her and Lois, they can figure out how to help. I also have alot of pain with my MC as I am getting older. It became critical when I was on a cholesterol drug called lovastatin. After I switched to another drug, Zetia, I felt much better. Now I am trying vytorin, because of high blood pressure, too. Also, the cold weather is unbearable for me. I hope you feel better soon!
Sue

I am in the same situation..I am in constant pain and only getting worse..my having MC has only made getting help worse..ever since they made the diagnosis that is all they see..I did not need a name for that after all I had had that all my life I will say though it was nice to finnally have a name for it and understand it..but it sure doesn't explain what I am feeling now..but try and tell a doctor that..and having a HMO health plan doesn't help..I try to ask the Doctor's to please explain and they just look at me like I am crazy..and say things like "well we really don't know" or "maybe you are just noticing more now". Sometimes I just want to scream.

Thanks for all the input. I am on a cholesterol med., also on thyroid med., and zoloft. Oh yeah, birth control also. I don't think that has any side effects. My neurologist tried the mexilitene last summer. I thought I had a stroke!! My right side was useless. My hand writing hasn't been the same since. My speech was even affected. I sounded drunk. I tried dilanten ( I'm sure my spelling is off with the meds....sorry) years ago and it worked great but I was allergic to it. I read that it has alot of bad side effects so I'm glad I couldn't take it.
Any way, I'll just keep plugging along and take it day by day. Thanks again

Connie,

The thyroid should be fine and so should Zoloft, but I would check to be sure your cholesterol medication isn't a statin drug. They are strongly contraindicated and in fact will often cause myotonia in a "normal" person.

I believe one of the reasons that many of us seem to have a sudden downturn around midlife is the widespread use of statins. Of course it just gets blamed on the MC.

Jan