Category Archives: Syrinx paralysis

Collagen Hydrolysate for Joint Pain


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It has been quite sometime since I have made any updates. The year was crazy. Lost my home in a flood, moved my mom who has Stage 6 Alzheimer’s into a terrific, safe memory care, and have been recouping and playing catch up since last summer. That’s my mom there in the photo. 

Joint pain has gnawed at me off and on for a couple years and has gotten much worse in the past few months. My hips are so painful that on a handful of occasions I cannot move my legs to walk. My range of motion is non-existent. The joints in my elbows and inner knees are in constant pain to the point where nothing can touch them, not even a soft pillow or my mattress. When the hip and elbow pain began to happen more frequently I thought I was having a flare-up. My neurologist thinks it is osteoarthritis and not M.S.-type or Syringomyelia flare-ups. He doesn’t think osteoarthritis is related to the Syringomyelia, but I swear I read a few interesting articles recently that noted the two issues have been seen in patients with a Syrinx. If I go back to find them, I will link here.

I have an appointment with a rheumatologist in the middle of August. For the last year I have been taking an all in one supplement: Chondroiton, Glucosamine, and MSM to alleviate the terrible joint pain. It may work for some of you, my fellow special spinal cord folks, but it has not worked for me. If anything, it has eased the crepitus a tad bit. Regarding pain, the supplement has not done anything. Time to make a change.

My neurologist mentioned Collagen Hydrolysate as having positive results for osteoarthritis pain, especially in the hips and elbows. So I’ve spent about 20 hours reading whatever I could find on the Internet and reading testimonials (and some negative comments) from current users of the supplement. Supposedly, Collagen Hydrolysate slows down the loss of cartilage, reduces pain, and gives you more mobility. I have ordered some for myself from the Great Lakes Gelatin company.  www.GreatLakesGelatin.com

This could be a long shot, and I realize that 20 hours of reading stuff on the Inter-webs isn’t the magic ticket, however I am quite hopeful that this product will work. A few athletes who I work with did have positive, personal experiences using it. As always, I will let the new rheumatologist know I’m taking it and I am eager to hear his opinion. My order should arrive by Friday. I’ll update as soon as I notice any changes.

in the meantime, here are some random pics of the last few months.

Christmas in Montana, the Rose Parade, beach days, hanging with Tito Ortiz at my health and fitness expo, Mother’s Day, crazy sun in San Diego, and other fun shenanigans. Thank you for reading!

Went to the Big Ranch near Choteau, MT for Christmas.

Went to the Big Ranch near Choteau, MT for Christmas.

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Recent Symptoms of My M.S. & Syrinx

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Generally, I try not to complain or let anyone know I am having physical discomfort. Certainly not my daughter or boyfriend. For some reason, even though they know it happens every now and then, I hate to: 1. complain, 2. appear weak to the two people who need me the most, and 3. in my humble opinion, nobody likes to be around somebody who is always moaning, grunting, and ailing. It is just human nature.

On to some interesting symptoms that I have been noting in my journal.

1. Searing pain in cervical spine running into base of skull.

The details: It feels like a hot knife has entered my neck – inside the spinal cord – and is moved in one direction up toward my skull. It is quick and burning. At the moment it happens and for a few minutes afterwards, I cannot turn my head. Maybe I have a huge fear that I will suddenly become paralyzed. Not to mention that brief searing pain makes it feel like a bubble has been injected into my neck making it almost impossible to turn my head for a few minutes. Then, as fast as the pain came on, it instantly disappears.  Once I have that two or three minutes of discomfort (I am being gentle here with my choice of words) for the first time on any given day, I know it will come and go throughout the day for many days or a couple weeks. Then BOOM! It is gone and I forget all about it until the next bout.  This “searing pain” is not to be confused with the general feeling of “sunburn” that overpowers my upper thoracic and cervical for weeks at a time. That particular “sunburn” pain is not an instant searing feeling and then suddenly gone. The sunburn feeling lasts weeks and then I usually have intense fatigue after a couple weeks.

As far as the “searing” symptom goes, I have had two opinions on it by two excellent neurologists: Neuro One is my regular guy and he said it could be a symptom of the Syrinx beginning a slow spread toward the top of the spinal cord. Or it could signify future scarring/lesions.  Neuro Two is the specialist who is a researcher out of Stanford who has a small practice in Los Angeles who mainly treats M.S. patients, but loves to research wacky diseases of the spinal cord. She thinks it is a muscular or vascular issue since my arms are getting weaker as time progresses. Possibly Syrinx related.

2. Arms have been stricken by some invisible force causing complete immobility and pain so bad it causes severe exhaustion.

The details: So far, this has only happened, to this severity, while I am asleep. Overall, my arm muscles have become much weaker and extremely tender. This is all day, every day and I have adjusted my life to taking great care of how I use my arms. However, I must share that I feel fantastic when I stretch, practice yoga, and lift free weights. Regarding this brutally painful occurrence that comes on only during my sleep, I am acutely aware of my arm pain in general and sleep with my arms straight out – picture lying in bed making a T. Or I sleep with my arms running down the sides of my body. Sometimes I need a reprieve and will gently bend them, slightly, and rest them on my tummy. If I bend them, they don’t “fall asleep” in the normal sense of pins and needles. They become almost instantaneously numb and cold. If you cut of my hand or arm, I would not feel it. (This is why Neuro Two feels it is actually a vascular issue or muscular in nature.) One night, I awoke to see the pinky finger on my left hand sticking straight up like it had been bent backwards. I couldn’t feel it, I just happened to see it. I pushed it back down to align with my other fingers. This did not hurt me until the next day when my pinky knuckles hurt. Anyway, back to this invisible force. I am awakened by a deep, DEEP pain where my elbows bend, exactly where you might have blood taken or an IV inserted. This pain is so excruciating that I am unable to lift my arms because my bicep and triceps and my forearm muscles are mush and if I try to move even a pinch, they are in such pain that it brings with it a wave of nausea. It feels like a screw has been drilled into the middle of my arm at the bend. The pain from that invisible screw is one of the worst pains I have ever experienced. Ever. I honestly cannot imagine a pain worse than that though. Now if I lay there, and be still and do not try to move my arms, the only pain is in that “screw”. If I actually try to reposition my arms, I cannot. It is as if they are paralyzed, but the muscle pain is absolutely horrid. Like a big, bad, giant is standing on my little bicep and crushing it. This is now happening more frequently. It first began about four months ago with only my left arm. Suddenly it moved to my right arm and it isn’t happening occasionally. It seems to happen more often – about once or twice a week. The more frequent the incidents, the weaker and more tender my daytime arms have become. You see, I have nighttime arms that don’t work and daytime arms that don’t bother me that much.

I just made a doctor appointment with Neuro One. Hopefully he will share some reasons why this is happening.

3. Blurry vision.

The details: My long distance vision has gotten so blurry. This happened overnight. This blurry vision will last for a few weeks and then one day I’ll wake up and my long distance vision is perfectly clear again. I have been to the eye doctor numerous times and he keeps saying I have 20/20 vision. When I try to get into the eye doctor during a bout of blurry vision, he is booked or by the time the appointment comes around my vision has gone back to normal. I eat carrots… Why is this happening??

Again, I will share this with Neruo One. I do think it is a symptom of being closer to my mid-40’s than not!!

I have some other symptoms that have plagued me lately, but nothing that worries me like the searing neck and paralyzed arms. So off to a delightful weekend!