Category Archives: Syrinx

Collagen Hydrolysate UPDATE

UPDATE on my experience with Great Lakes Collagen Hydrolysate!

IT WORKS FOR JOINT PAIN!!! After only 15 days using this product, my hip pain, knee cap pain, and finger joint pain is all gone. My range of motion in my hips is getting slightly better. I still feel a pinch of pain if I push myself too far, but it has definitely improved. My cervical spine has stopped popping every time I turn my head or tilt my neck from side to side. Below are my notes on the product.

The shipment arrived on Monday, July 28th. I immediately began using it as the label indicates:

2 rounded tablespoons in the morning (about 14gm)

2 rounded tablespoons prior to bedtime (I actually have it with dinner or shortly afterward)

The reviews on Amazon, Bodybuilding.com, and the Great Lakes website all tell the truth when they say it is easily dissolved and completely tasteless. THAT IS TRUE! You cannot taste anything. The reviews touting the positive effect on joint pain are also what I am experiencing after only two weeks.

When I have it in the morning, I mix it in my coffee with my almond milk and sugar. Sometimes I have a tablespoon with my lunch or shortly after lunch in a cup of green tea. When I take the Collagen Hydrolysate at night before bed I have tried it three ways: sprinkled over my dinner, in a glass of cold water with a dash of black cherry juice, or in a cup of hot tea. So far, each method has worked, however the cold beverage was my least favorite method.

Collagen Hydrolysate with my favorite teas!

Collagen Hydrolysate with my favorite teas!

 

 

 

 

 

 

 

 

There is no flavor whatsoever. It dissolves quickly on or in hot food or beverages. I have sprinkled it on curry, pasta, and in rice. The reason why mixing it in the cold beverage is my least favorite is because even though it dissolves easily, there are a few little swirly floaty pieces at the bottom of my glass. They look almost waxy and those few pieces never seem to dissolve. It is a mental thing for me as to why I don’t like to gulp it down with cold water.

Regarding the effect on my joint pain, it really has made a difference for me. I realize it has been only two weeks that I have taken it, however it has stopped the constant cracking and popping from my cervical spine all the way into my toes. The range of motion in my hips and knees has been rather limited for quite awhile now. I can now open my hips wider without pain when doing yoga, swimming in the pool, and doing strength exercises. When I am exercising, I can do leg lifts without any pain. It has really been a dramatic change for me. My cervical spine would feel like I had very bad sunburn and it would always pop and crack with a turn of my head or even when I tilt my head side to side during exercise (or for whatever many reasons we tilt our heads side to side!) I still hear and feel a slight bit of grinding in my left hip and C-spine, but nothing even remotely close to what it had been doing up until about a week ago.

If anyone is thinking of taking this product, please check with your doctor first. Read about it. Do your own research. It has been a miracle for me and I just can’t think of one complaint so far. Yes, two weeks is not long enough to toot a horn or have a parade in honor of collagen hydrolysate, but my gosh, this has been a life saver for me.

I plan to update in two weeks, once I have been on it for a month, and will try to do periodic updates on my results.

Stay cool and healthy!

Me in/on Catalina Island!

Me in/on Catalina Island!

 

 

 

 

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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Baclofen

Baclofen

Baclofen

It has begun.

The pill-popping.

This is something I have been grappling with for months and months. Taking medication every day gives me an  unsettled feeling. There are many reasons why I do not wish to become a daily pill-popper. The main reason is that I do not want to put chemicals into my body that have the potential to make my physical well-being become dependent on them. Make sense?

Baclofen. Baclofen is a muscle relaxer and anti-spasm medication. Everything I have read and learned from my pharmacist is that Baclofen has terrible withdrawal symptoms similar to Benzo withdrawal or alcohol withdrawal (neither of which I have ever experienced, but have witnessed in other people.) Additionally, I have been avoiding medication like this because I read that muscle relaxers make you feel a little hinkey in the head. My family owns multiple rehab centers so I am familiar with medication addiction. Maybe that’s why I am leary of taking anything.

So far, (so far being 36+ hours) the Baclofen has been amazing. I am tooting that horn even though I am not on board with the pill-popping train. It actually works. It has only been a couple of days and already I feel looser, barely any tension, and very few spasms in my legs and none in my shoulder blade. The Baclofen is supposed to be taken with my Gabapentin for maximum effectiveness. I tried that last night and this morning and I feel great. My head does not feel funny at all. I’m happy to report that this doesn’t seem to be a typical muscle-relaxer in that regard. My dosage is quite low at 20 mg per day. It seems that 80 mg is a high dose and somewhat typical for MS, Syringomyelia, and other spinal cord issues. I’m happy to stick with the 20 mg per day. It is working.

Yoga time.

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!

Daily Yoga and Stretching

Move that body or lose that body!

My body is exhausted, fatigued, sore, tender, stiff, and some days unbearably painful. I have been practicing yoga off and on for years. It was only recently that I realized this should be practiced every single day to help alleviate the pain, stiffness, and fatigue of muscles and spine.

The Iyengar method focuses on alignment of the physical being through various poses (called asanas). This method also focuses on breath control while in each pose (asana). I really like Iyengar because you hold your pose much longer than in other methods. There isn’t really very much Vinyasa flow in this practice. Vinyasa flow is the fluid-like movements going from one asana to the next. Remember, poses are called asanas. With the Iyengar method, each asana is held for a period of time while getting the body into the proper pose and alignment. My body reacts in a positive way to holding the poses rather than moving in a fluid motion from pose to pose.

Another reason why I much prefer Iyengar is due to the use of props such as blocks for support, a belt (think bathrobe tie) to help stretch muscles you might not be flexible enough to stretch yet, and blankets or pillows used for a little added tailbone support.  I add in a little Vinyasa flow occasionally through a class to practice mindful breathing and have a routine of sorts.  It  feels fabulous to have a “routine” and move about from one pose to the next (think a choreographed aerobics routine, but with yoga). I am just not skilled enough in my poses to feel comfortable creating a routine on my own so I generally practice breathing and do a variety of about 20 poses while holding each for a few minutes.

It is much easier for me to practice at home, early in the morning when the house is quiet. While going to class is definitely pleasurable, finding the time and scheduling it in during the day is more difficult. So for now, a quiet space at home is working out just fine. Also, I have been using a book called Hatha Yoga Illustrated by Martin Kirk, Brooke Boon, and Daniel DiTuro. I use the website and I purchased the book about five your six years ago.   Hatha Yoga Illustrated

The book is fantastic. It has step-by-step photos and written instructions for each pose. If I follow this book, I could practice for 30 minutes or 60 minutes depending on how my body feels on any given day. I never practice for less than 30-minutes though. It really takes that long for my body to warm up, loosen up, and my brain and thoughts to become focused. I feel stronger, leaner, taller, more in tune with my own self and people around me. I am more flexible and less pained.  The step-by-step instruction is  exceptional. It makes it very easy to practice at home.

Example of Hatha Yoga Illustrated Instructions

Another little ditty I found is a book and website about yoga for Multiple Sclerosis patients. (Link below) http://www.yogams.com/

http://resourcecenter.msworld.org/education/educational-library/book-reviews/yoga-and-multiple-sclerosis-a-journey-to-health-and-healing/

 

Hopefully others of you out there are taking this wonderful gentle practice to help keep your body in flowing, moving, working order. For my personal case, my neurologist recommended yoga for my body. Please ask your own doctor about practicing yoga yourself. Do not just begin. Each spinal cord is different!

Namaste

Different Doctors – Different Opinions

DoctorThe best patient is a well-informed patient. You are your own advocate. Ask questions. Write them down before your doctor visits. Show up prepared so you will receive the best advice and the most information that will benefit you that your doctor can provide.

Doctors give varying degrees of advice when it comes to Syringomyelia. Possibly because it is not yet well-researched. Read all that you can about the disease. Talk to doctors, talk with your peers with the disease through websites and forums, and learn what you can, not only from doctors, but on your own.

Checkout some of these sites for Syringomyelia and Chiari Malformation and read through them to see what new research has been done. Find a doctor who specializes in these two diseases of the spinal cord.

American Syringomyelia and Chiari Alliance Projecthttp://www.asap.org/

Chiari & Syringomyelia Foundation: http://www.csfinfo.org/

The Chiari Care Center: http://chiaricare.com/Related-Disorders/Syringomyelia.aspx

Mayo Clinic: http://www.mayoclinic.com/health/syringomyelia/DS01127

Cleveland Clinic: http://my.clevelandclinic.org/disorders/Syringomyelia/hic_Syringomyelia.aspx

When I was told I have Syringomyelia from my cervical spine to bottom of thoracic spine, my first neurologist told me that all physical activity should be stopped. Completely. He was referring to: running, weight-lifting, hiking, kayaking, aerobic exercise (except swimming – swimming is okay), carrying anything over 5 pounds, or carrying anything on my back or shoulders such as a backpack or a heavy purse. No pilates, no dancing, no rough-housing. He had a laundry list of stuff that I should no longer do. It was recommended that I not reach above my head. Don’t tilt my neck back. Don’t roll my neck. Be gentle with my body.

Neurologist number two said to keep swimming, use the StairMaster (no running on treadmill), lift weights 5, 8, and 10 pounds, keep hiking, keep kayaking, but maybe nix the idea of whitewater rafting and sky-diving. So I won’t sky-dive. I will however go whitewater rafting. She said it will get worse regardless of activity. She did not endorse insane activity like sky-diving or running, but did say that continuing to be active would alleviate some of the top symptoms of the ailment. Being sedentary can oftentimes make people feel worse due to loss of muscle mass, weight gain, and not keeping bones healthy. She also reinforced the following:  do not reach above my head. Do not tilt my neck back. Do not roll my neck. DO be gentle with my body.

For my own case of Syringomyelia, I agree with doctor number two. I do heed warnings from both doctors to stop running. Stop doing anything jarring. No rolling of the neck. However, I will say activities such as bowling, badminton, volleyball, and stuff like that I still enjoy. I am not jumping around and jarring my body. I see where people could get a bit more active and aggressive though.

Listen to your doctors. Get second and third opinions. A lot of people I have spoken to have a small Syrinx. Maybe from T2 to T3 or T6 to T8. Mine is from Cervical all the way down to T12. I have severe Coccyx pain (coccydynia). So I actually do try to be careful with the activities in which I choose to participate. Some people I have spoken to with a small Syrinx have severe disabilities with mobility issues. Other people go their entire lives without any symptoms at all. I have yet to encounter anyone with a Syrinx as long as mine who is completely debilitated. Some people I have talked with who have a long Syrinx go through flare-ups and waves of pain and immobility, but seem to bounce back from the flare-up quickly. I have noticed the people with the longer Syrinxes are the most active. Maybe because of the thought of paralysis…? Maybe the more active people did something during some activity that cause the Syrinx to begin with..?  I have no idea.

Talk to your doctors. Get informed.