New Questions from Oldster

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New Questions from Oldster

Postby birdlover3 » Sat Feb 09, 2013 10:32 pm

It's been a long, long time since I have been here because I just found the notebook with my login information. I occasionally read the posts here but could not post until tonight. MY CM is 7-8 mm and I have a very small SM. I only see my treating NS once a year because it's a long and hard drive to his office & I don't drive anymore. I go to PM monthly. I laugh because every few months the nurses at PM keep coming up with new diagnosis. They don't understand CM or SM so they try to find other causes for my pain. I also have myofascial pain.

I use the Fentanyl patch, Ultram, Gabapentin, and Tizanidine (muscle relaxer) for my pain and symptoms. As most of us here know, none of them take the pain away, but they do help. I use stretches/exercise and heat and ice. I have to be careful using my Tens unit because it brings on shingles.

I have several questions that I hope some of you might have some answers.
1) Have any of you found any stretches or exercises that help?
2) Has anyone found anything that will help the upper back and spine pain? When a weather front comes in my muscles seem to get hard & I have more pain. What really bothers me is sometimes right behind my underarm, the muscles get hard and I have a hard time getting dressed.

(My husband and son understand my pain because they live with me & they know I do what I can when I can. The rest of my family does not understand what I'm going through. They think I have pain like people with arthritis have & I have found it's no use trying to explain my pain to them. My daughter thinks if I just get up and go and go and go I could do more. I wish I could be normal like I was before ACM1 reared its ugly head, but I'm not normal anymore.) I have been trying to come up with a way to make extra money, but so far, I have not found a way.
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Re: New Questions from Oldster

Postby Graybo » Sun Feb 10, 2013 8:57 am

Hi

For years I have believed that my SM is more of a muscle problem than a spinal cord problem. Do some searches on selenium and white muscle disease, stiff lamb disease. These are animal diseases that are recognised by vets and treated with selenium by injection. Selenium can also be dangerous in high doses so you need to be aware of that, but I have been using it for a couple of months now and I can see a big difference in the softness I feel in some of my muscles. I have used 5 x 200mcg a day - that's MICROGRAMS not milligrams So I take 1 milligram or 1000 micrograms a day. That is 5 times the dose on the bottle, but it the amount advised for treating muscle disease by a vet I listen to.

Selenium is used to treat several muscular diseases in animals. While I was searching selenium I also found that people who use crystals for healing, use selenium to realign the spine! Maybe just a coincidence but it has changed the way my muscles feel - the parts it has worked on up to now feel more comfortable than they have ever felt.

Selenium is used with vitamin E and you also need magnesium to relax the muscles. vitamin K2 which you might not have heard of also seems to help. Both of these seem to be used to put calcium back into the bones where it should be and not as bone spurs or calcified muscles or other soft tissues. From what I can make out, a diet high in acid food and drink cause calcium to be released from the bones and teeth and deposited on the bones as spurs or maybe in a muscle injury etc.

I really believe that I can fix my SM now after 21 years wasted in pain and weakness and stiffness etc. I have used magnesium in different forms for a few years with some success but it wasn't till I added the selenium that I noticed this big difference in muscle softness.

So I am almost sure that the hardness and lumpy bits in my muscles are what puts pressure on the spine and other parts and causes the pain. I think the calcium deposits are what causes the stiffness. That is not to blame too much calcium for the problem, but rather that the calcium is in the wrong place due to poor diet and lack of minerals and also old injuries. I have read about calcium getting into injured muscles and staying there.

I have found hard parts of my muscles in the areas you describe and many more. You need to look at a muscle chart and maybe a skeleton to see which muscles are attached to certain areas and it becomes more obvious in my opinion as to why you have this pain and how to stop it.I have found muscle that affect my shoulder pain as far away as my wrist and up my arm shoulder around the shoulder blade under my arm and across to the spine - looking from the back there is a big triangle of muscle between the spine and shoulder. Get someone to take a photo of your back while you try and stand up as straight as you can and look for swelling/differences in each side and also look at any scans you. I found white areas in my muscles on the scans that fit in with the pain areas. Look for any sign of the spine pulling to one side from muscle tension. I was told I had scoliosis at one time and I think uneven muscle tension is probably involved with that too. Imagine your muscles as being like a net or spiders web. They are all connected and tension in one muscle moves others out of line as well, so it's more than one muscle group involved. pull on a thread of a spiders web and see how it goes out of shape.

If you have tension in that muscle under your arm you will find you can't lift it up above your head with your arm straight. My shoulder was so bad I had to lift my right arm with the left one but the tension still stopped it going up with my arm straight. Also tension in parts of my chest stop me putting my shoulders back to where they should be. When I can realx the chest more I find I can breathe right up into my chest which has been restricted for so long it is hard to get a full breath. I think the fatigue is partly due to restricted/shallow breathing

GP
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Re: New Questions from Oldster

Postby birdlover3 » Sun Feb 10, 2013 4:33 pm

Thank you very much for your reply. Everything you wrote makes sense to me & I will do like you say. I’m glad you mentioned scoliosis. Some of my films show I now have mild scoliosis that I didn’t have years ago.

A few days ago I started taking 5-HTP Gold because I heard on the Dr. Oz show that it makes selenium in the brain that helps with muscle pain & helps people sleep better. I also heard it helps curb the appetite. I didn’t know selenium could be harmful in high doses & I appreciate you mentioning it. (I’m saving a copy of what you wrote to make sure I take exactly what you mentioned.)

That’s amazing that your vet is the one to help you with your symptoms. Our dog’s vet seems to know more about SM than any local docs but he’s never offered me any advice. He told my husband when a dog has a lot of pain with SM he puts the dog to sleep. I appreciate you sharing your wisdom. I may give a copy of your post to our vet & he may be able to help a dog that he would normally put to sleep. The chiropractor my husband uses knows about ACM1 and SM but he has no advice either. I miss the adjustments from a chiropractor.

I’d love for my pain to lessen so I can feel better and also to allow me to find some type of work. I remember some person here on ASAP sold insurance. I’m determined to find something to help my pain and symptoms. I agree that help lies in nutrition (which includes vitamins) and exercise.

Thanks again and keep sharing your wonderful advice!
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Re: New Questions from Oldster

Postby Graybo » Sun Feb 10, 2013 6:04 pm

I do have to add that I take a number of other supplements as well, but I have used the magnesium for a long time and the selenium seems to have been the missing mineral I needed for the muscles. I had heard of selenium was to be taken with magnesium, but it was only needed in tiny amounts so I didn't bother. Shows that even a trace mineral needs to be there to make things work.

Graham
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Re: New Questions from Oldster

Postby Graybo » Mon Feb 11, 2013 6:20 pm

I sent you a PM
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Re: New Questions from Oldster

Postby tennesseewalker » Sat Mar 02, 2013 1:42 pm

I take Soma + Baclofen for my persistent muscle spasms. They're the only things that help me. I have to avoid lifting my right arm or the spasms kick in big time. They sure are painful.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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