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Wednesday, April 29, 2009

The importance of B-12

What are the symptoms of a vitamin B-12 deficiency?
  • Energy. Even minor deficiencies of vitamin B-12 can cause anemia, fatigue, shortness of breath and weakness.
  • The Nervous System. Deficiencies of B-12 can cause neurological changes including numbness and tingling in the hands and feet, balance problems, depression, confusion, poor memory and Alzheimer's-like symptoms. Long-term deficiencies of B-12 can result in permanent impairment of the nervous system.
  • The Gastro-Intestinal System. B-12 deficiency can cause decreased appetite, constipation, diarrhea or alternating constipation/diarrhea (also called Irritable Bowel Syndrome), weight loss and abdominal pain.
  • The Immune System. Vitamin B-12 is necessary for normal functioning of white blood cells. Studies show that B-12 helps regulate Natural-Killer T-cells and prevents chromosome damage.
  • The Cardiovascular System. Vitamin B-12 participates in the conversion of homocysteine to methionine. Elevated homocysteine levels are a known independent risk factor for heart attack, stroke and thrombosis. Without adequate B-12 levels, homocysteine levels typically rise.
  • Special Senses. Degenerative changes in the central nervous system caused by B-12 deficiency can also affect the optic nerve, resulting in blue-yellow color blindness.
  • Other Symptoms of vitamin B-12 deficiency include sore mouth or tongue
  • In Infants and Children, signs of vitamin B-12 deficiency include failure to thrive, movement disorders, delayed development, and megaloblastic anemia. (ProHealth)
Who suffers from B-12 deficiency and why?

Recent studies show that up to 78% of senior citizens are B-12 deficient.  Though no specific percentage was reported for the general population as a whole, it is reported that the segment is much larger than previously thought.

78% of fibromyalgia patients, and 77% of patients with chronic fatigue syndrome, suffer from irritable bowl syndrome (IBS), which is a major cause of vitamin B-12 deficiency.  Which came first? Are fibromyalgia patients B-12 deficient because of IBS, or is IBS a result of a cellular or neurological insult caused by a B-12 defiency?

Other high-risk groups for B-12 deficiency include:

  • Those who use acid-blocking or neutralizing drugs (such as Prilosec, Prevacid, Nexium and others);
  • Those who use drugs which impair intestinal absorption (such as Metformin, Questron and Chloromycetin);
  • And people who have had gastric surgery.

The most recent and disturbing studies suggest that vitamin B-12 deficiency is more prevalent in young adults than previously thought. One study found that vitamin B-12 deficiency was similar in three age groups (26-49 years, 50-64 years, and 65 years and older), but that early symptoms were simply less apparent in the young. This study also found that those who did not take a vitamin B-12-containing supplement were twice as likely to be deficient as supplement users, regardless of age.

Secondly, unlike other water-soluble vitamins, B-12 is stored in the liver, kidneys and other tissues. Deficiencies of B-12 often appear so slowly and subtly as to go unnoticed, and blood tests for vitamin B-12 levels miss early deficiency states at least 50% of the time.

Which form of B-12 should you take?

Vitamin B-12 is a collection of four related, but different, cobalt-containing molecules.  Each of these forms plays a distinct role in the body:

Hydroxycobalamin is a unique form of B-12 that quenches excess nitric oxide (NO-), the precursor to peroxinitrite (ONOO-). Hydroxocobalamin (and methylcobalamin) also play a more important role in addressing neurological disorders than cyanocobalamin.

Hydroxocobalamin participates in detoxification, especially cyanide detoxification. Cyanide levels are typically elevated in smokers, people who eat cyanide-containing food (like cassava) and those with certain metabolic defects. Excess cyanide in the tissues blocks conversion of cyanocobalamin to methylcobalamin or adenosylcobalamin. In such instances, hydroxocobalamin is the vitamin B-12 of choice. Hydroxycobalamin is FDA- approved as a treatment for cyanide poisoning.

Methylcobalamin is considered by many researchers to be the most active form of vitamin B-12. It is the requisite form of vitamin B-12 in the methylation cycle. Methylcobalamin protects cortical neurons against NMDA receptor-mediated glutamate cytotoxicity and promotes nerve cell regeneration. Methylcobalamin is the only form of vitamin B-12 that participates in regulating circadian rhythms (sleep/wake cycles). It has been shown to support improved sleep quality and refreshment from sleep, as well as increased feeling of well-being, concentration and alertness.  (Read: constant fatigue and fibro-fog!).

Adenosylcobalamin (dibencozide), another highly active form of vitamin B-12, is essential for energy metabolism and is required for normal myelin sheath formation and nucleoprotein synthesis. Deficiencies are associated with nerve and spinal cord degeneration.

Cyanocobalamin, the most common form of B-12 found in nutritional supplements, is a synthetic form of B-12 not found in nature. It has the lowest biological activity and must be converted in the liver to more biologically active forms. This conversion is inefficient and some people who may not benefit from cyanocobalamin due to lack of assimilation or conversion. However, the cyano form of B-12 is needed to balance hydroxycobalamin in performing its NO-quenching function and should therefore be included in hydroxocobalamin supplements.

Since vitamin B-12 (especially the hydroxocobalamin and methycobalamin forms) offer such potential benefits for multi-system disorder sufferers (fibromyalgia, chronic fatigue syndrome, etc) - without known risks - it seems reasonable to suggest that anyone suffering with fibromyalgia should consider taking a supplement containing these two important forms of vitamin B-12.

Furthermore, because of the balancing effect that cyanocobalamin has on hydroxycobalamin and the protective and regenerative effect that adenosylcobalamin exerts on the myelin sheath of nerves, these forms should also be considered as an important part of any complete vitamin B-12 supplement.

B-12 in the cyanocobalamin form can be found everywhere and the other forms are extremely hard to find.  Major drug stores and supermarkets will not carry any form other than the cyano. After much search, I found the best place to get these other forms of B-12 is through Amazon. Of course, I find everything I need from Amazon (which is why I share the links with you).  Thus, I am including links for these forms of B-12 to be purchased through Amazon.  If you can find the products cheaper anywhere else, please share your find!

Gentle hugs and an abundance of B-12 to all!

Jessi

Reference:

Myatt, Dana. (2008). B-12 Deficiency in ME/CFS and FM May Provide Clues & Relief. Retrieved from http://www.prohealth.com//library/showArticle.cfm?libid=13595


Tuesday, April 28, 2009

Fibro Pods

You don't have to be technologically savvy or own an MP3 player to take advantage of the numerous and wonderful podcasts available that discuss Fibromyalgia, RSD, Lupus, and other chronic pain syndromes.  There are also some wonderful podcasts on meditation, relaxation, and soft music that will help you fall asleep.  The best part is: it's all free!

Here is what you need:

A computer.  I am going to assume you have one if you're reading my blog.

Internet access.  See above.

This is how you do it:

Go to the Apple website and download iTunes.  From the main site, click on "Downloads" in the top menu bar to go to the download page.  On the left side of the page, under "Top Downloads", is iTunes.  It's free to download and easy to install.

Once you have installed iTunes, go into the program and click on "iTunes Store" in the left frame. You will then be taken to the iTunes store where there is a plethora of stuff to peruse! However, most of it costs money. So be careful what you download!

On the left side of the store window, click on podcasts.  Then you will be taken to all the podcasts available through iTunes.  And THESE are free, so take what you need!  To find specific podcasts on Fibromyalgia or meditation, or whatever you're looking for, click on "Power Search" on the right side of the iTunes store window.  Type your search keywords in the "Description" text box and hit enter.

If you find a specific podcast that you like, and is still active, subscribe to it! You can always delete them later after you've listened. 

Each podcast show will list their podcasts at the bottom of the iTunes store window.  To download, you may have to use the scroll bar at the bottom to scroll the frame to the left and access the buttons on the right.

To listen to your podcasts, simply click on "Podcasts" in the iTunes window (outside the frame in which the store is being shown).  Your podcasts will be grouped by the name of the show and clicking on the arrow before the name will allow you to expand or collapse the list of podcasts.  If a podcast episode is grayed out, you don't have it.  But you can get it by simply clicking on the button to the right of episode name.

Make sense?

There is so much information available to us through podcasts, it just takes a little searching.  Once you have what you need, you can just relax and listen to the podcast from your computer or save it to a CD and listen to it wherever you are.

Gentle hugs and happy podcast hunting!
Jessi

Friday, April 17, 2009

Let it be


Let It Be (Long Version) - Carol Woods & Timothy T. Mitchum

Defeated

This week has not been kind to me, to say the least.  I feel I'm slipping deeper and deeper into the "pit of despair" (Princess Bride reference, to be said with a raspy voice).  There is so much I have to do, but I do not have the energy or desire to do any of it anymore.

My Momma keeps telling me that being disabled is a full-time job.  She is absolutely right, but the pay is lousy!

Since I have been out of work on medical leave, I have applied for Social Security disability benefits and SSI (did you know you could get both if approved?), I have accepted a piddly sum as settlement for the car accident that caused me to be in so much pain (FYI - two years of pain and suffering, and a projected lifetime of the same, is worth about $8000), I have fought with my insurance company over whether or not I was actually covered (payed for extended benefits through COBRA and they insisted for weeks that I was not insured), and have done countless other things, most of which I cannot remember, to include re-evaluating my life completely.  Did I mention I'm also still working on my graduate degree?

I have requested countless forms to be completed by my doctor for the purpose of short-term disability, "extended" medical leave, FMLA, State assistance, Social Security, exclusion from jury duty (I was approved for a lifetime exclusion - it can be done!!), and God only knows what else.  I can't tell you how many trees were killed during this process, but I won't accept responsibility for their deaths!

There were days when I spent literally hours on the phone with one agency or another, just trying to get help - financial, medical, whatever.  The $8000 is completely gone, as I had to pay for COBRA, get caught up on my car and mortgage payments, and pay for my medication out of pocket (EXPENSIVE!) until my insurance company decided I was covered.  I really need to submit for reimbursements!

The thing is, I don't care anymore.  Maybe it's only that this week has beaten me down (on top of everything else, my refrigerator died - I need a new compressor and don't have the money to get it fixed).  I may wake up tomorrow and feel a new fight building deep down inside of me, but today I just want to curl up into a fetal position (which I can't because it would hurt) and sleep until everything is back to normal again.  I don't want to call my insurance company (who is stating I am, once again, not covered); I don't want to work on my classwork or homework, despite the needed distraction from my life; I don't want to do anything.  Nothing.  

Well, that's not necessarily true.  I want to have a temper tantrum.  An all-out, screaming, stomping, throwing things, kicking things, gut-wrenching hissy fit.  I want to feel something besides the pain.  I want to feel the anger, the passion, the fight - something that will get my blood boiling to the point that I want to get up and act in self-preservation, something that will make me feel anything other that complete defeat.

I wanna get me a little oblivion, baby 
And try to keep myself away from myself and me
 

 - Counting Crows, "Perfect Blue Buildings
From August and Everything After

This is just my rant for today. I'm exhausted, hurting, and don't want to play anymore. I promise that not all posts will consist of my whining about how much this sucks.  Maybe some, however. I know I am not alone in my feelings, but I feel completely and utterly alone in everything else right now.

I keep hearing that things will get better.  My only question is: How?

Tuesday, April 14, 2009

Understanding FMS, part 1

For anyone who knows someone who suffers from Fibromyalgia:

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3.My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appetite is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well or that I have been cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be.

Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies!

Author unknown




My personal contributions:

Don't ask me how I feel unless you really want to know. I'm not going to lie and say I feel "fine" just to make you feel better.  I'm not fine.

Don't ask me if I'm getting better. There is no "getting better" with Fibromyalgia. Everything changes from day to day, minute to minute, even second to second. It's all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I'm not asking for your pity. I'm asking for your understanding and compassion. If you really want to help me, hold the door open for me when I have to use my pimped-out walker; or just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective.  But one happy or funny moment could change my day.

If I'm crying, it's ok to talk to me. I don't cry (much) from the pain, unless it's one of my "episodes" that landed me in the hospital last year. I cry because I'm stressed out, exhausted, overwhelmed, pissed off, feeling emotional, or just plain frustrated. Sometimes it's just one remark that sends me over the edge. Sometimes I'll cry if I'm asked about my pain, though I'm getting better at this. At any rate, I cannot control this any more than I can control the weather. 

In short, don't avoid me because you don't want to deal with my issues. I don't want to force them on you and, for the most part, won't even mention them until you ask. Unless you're my Momma. I seem to unload all my pain and symptoms onto my Momma because she'll actually listen to me and not judge.

Which brings me to my final rant: don't judge me. I don't have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. I'm always afraid I'm going to OD because I have to take SO MUCH pain medication just to be able to bring the level of pain down to something more bearable. It never completely goes away. 

I can understand that maybe some feel FMS is not such a big deal. After all, it's not cancer. It's not heart disease. So, it's not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. I've never told my family this, and it may come as a shock to those who know me, but I considered it myself on a few occasions. Dr. Jack Kavorkian (remember him?) assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don't say this to fibro sufferers. This is not a harmless disease.

Fibromyalgia is a very hard disease to go through alone.

Introduction

Welcome to Fibro Blog! 

My name is Jessica and I was diagnosed with Fibromyalgia in November 2007, seven full months after being rear-ended in a car accident.  I had back problems previously, having had spondylolisthesis and a double-level spinal fusion at L4-L5-S1 in 2003.  Thankfully, the accident did not displace any of the instruments currently implanted in my lumbar spine.  However, the pain I experienced after the accident, and to this day, is more intense, more excruciating, than the pain I suffered with spondylolisthesis.  At least with the spondy, it was more acute and not the constant, uncontrollable pain I experience now.

After my accident, the pain never went away.  I tried to work through it - literally, full-time job and pursuing a graduate degree in education - but it never stopped, continued to intensify, and continued to change every aspect of my life.

I tried many things before my diagnosis, to include steroid injections directly into my cervical and lumbar spine.  I gave up on those for two reasons: 1) it didn't work; and 2) because the anesthesiologist who performed the injections (the same who was at my fusion surgery and had given me the same injections before said surgery) had to thread a tube up through my spine from my tailbone to the point at which the steroid needed to be injected (a good 6+ inches).  It was painful to say the absolute least! I sobbed on the table and tried not to move because I was so afraid of something going wrong.  I don't blame the doctor for this at all.  He was unable to inject the steroid directly into my lumbar spine due to the titanium screws, rods, and cages I currently have implanted there.  There was just no way around them.

My doctor and I were at a loss.  My MRIs and x-rays were clean, so why was I in so much pain?  My doctor's wife had just been diagnosed with Fibromyalgia and he was becoming more and more familiar with the symptoms, so he sent me to a Rheumatologist for examination.  I had several (hundred) blood tests to rule out various other disorders, diseases, whatever, and suffered through the trigger point examination recommended by the American College of Rheumatology.  11 out of 18 trigger point "hits" gets one the diagnosis of Fibromyalgia.  I believe I had 16.

So what did this mean in terms of my treatments? Increase Neurontin (Lyrica did not work for me). Increase anti-depressant.  Does the depression cause the pain or does the pain cause the depression?  In my view, both.  And it's a vicious cycle.

At this point, I am technically on my 4th medical leave from a job I've only had for 2-1/2 years.  I cannot sit up straight for more than a few minutes without severe pain my lower back, hips, and legs.  Thus, I cannot sit at a desk, answer the phone, and work at a computer.  I use my laptop at home, sometimes in bed and sometimes in my recliner.  While in my recliner, I have to be reclined at about 120 degrees (I really hope I'm figuring this right) and have full head and neck support if I'm on my laptop or just watching TV.  If I keep my head lifted off the supporting back, I experience muscles spasms, tightness, then blinding pain in my neck  - resulting in a fierce headache.  If I spend too much time typing on my laptop, however, I start experiencing moderate to severe pain in my shoulders, arms, and hands.

And it has already been too long!

In closing, I would like to welcome you back to this blog because I plan to discuss many, many things related to Fibromyalgia, chronic pain, various treatments, and disability.  It is my goal to have guest writers, such as my son who takes care of me full-time, and share various research articles with you.

Gentle hugs to all, and to all a pain-free day!

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