whew! i'm still standing. or rather sitting. or am i passed out on the floor?? all i know is... i made it through the holidays and now... i'm getting ready for 2010!!

merry christmas!! i’m still standing. or rather sitting. or am i passed out on the floor? all i know is… i made it through!!

what a whirlwind holiday season this has been! most days i had no idea if i was coming or going. i was foggy brain multi-tasking which, trust me, was the scariest thing ever. i mean it. think of this… my family room had about 15 projects going on, you could not see the floor, the table tops, the chairs, the couches, it was absolute chaos in there… but for me? i was workin’ it. i had three 6-foot tables in that room, i swear when i wasn’t in there, there were little project angels helping me… (a girl can dream, right?) i have to really give it to my husband, he let me do my thang (that’s right THANG). he generally (and by generally i really mean always, can’t stand it, has no patience for it) hates clutter and if that room was not the ultimate, extreme definition of clutter, i don’t know what is… but he just soldiered on each day, for weeks, and let me work. i’m pretty sure he knew i would have lost my mind if he said something, but that, my friends, is support.

i gotta tell you, i had a lot going on before that big guy was comin’ down my chimney… i had:

• eight 12×12 scrapbook calendars to make (only 3 of which were the same) so i was designing scrapbook pages for hours!,
• 28 kids to buy for (thank goodness for amazon.com!!) – let me tell you those lightning deals on amazon saved my “you know what”,
• one 12×12 album to scan and copy to create two smaller 8×8 albums (seriously can santa bring me a 12×12 scanner next year?? scanning a page 4 times is so not fun!! can you say 26 x 4? and honestly my husband did all the scanning, what a guy!),
  
  
• two desk calendars (thankfully there’s snapfish where i went to create online) and
• two poster collage calendars (again i love snapfish!)
• christmas cards (last minute decision… snap! fish!) and
• i helped my daughter make eight custom designed tshirts (what was i thinking…. i was thinking in October… that she needed to start, which is what i told her… told her in November… told her December 1… 2… 3… you get what i’m sayin’… her beautiful brother helped me in the middle of the night to get these and the calendars done)
• in addition to her one 12×12 scrapbook calendar… (again, why do i encourage the start of all these projects? i love the feeling of frustration and stress all at the same time… it’s such a yummy feeling! and honestly (again) i didn’t really do anything but encourage/motivate/yell/yell/yell at her to get it done) but… her creations were awesome! i have to say it again… totally awesome!!!
  
  

and all this in the span of the three weeks before santa arrives… 80% of it the 5 days prior to… oh yeah, totally forgot…i also had:

• the cookies to bake, which the kids did (thank goodness for auntie cheryl who faithfully comes every year to lead the troops while i quality check the end result)
• the tree to decorate, which i did in the middle of the night one night after i just couldn’t take it anymore (the tree had been put up and the lights were on it, what was my excuse? don’t get me started… but i had to put my mom’s handmade ornaments on it.)
• i scrapbooked an album as a birthday gift for a family member (i was really happy to have done this, this one made me feel really good)
• i worked a little bit up until christmas eve, which i had meant to take off completely… because i was needed to do some things. it took more time than expected, but it was worth it.

moving on… i’m getting ready for 2010!!

now that christmas is over it’s that time of the year where everyone starts to make resolutions for the coming year and reviews the goals they did or did not achieve for the prior year. we do this as a family in my house. we set aside a day and scrapbook a page and each list our “10 most memorable moments” and “10 goals for the year” some of the goals are the same for each year, some are different – it’s not a time to be judged. my son is very good about listing smart achievable goals, he knows how to create achievable goals. i am going to learn from him this time. what a novel idea… an achievable goal! this is such a great skill he has at such a young age… he is very wise for a 17-year old. tomorrow is the day we will work on our lists and scrapbook together as a family. i hope for a drama-free day… i plan to just work at my desk with the family with tani by my side and get into my groove with positivity and God on my side… because that is how i plan to start 2010!

this will be a year of change for my family…

• my son will graduate from high school. we will find out what his next path in life will be in the spring, i am going to be brave about this, but i already miss him. my best friend’s son is leaving for the air force in february… i miss him already even though i never see him as they live a state away. he was the first baby between the two of us bff’s so i feel as though he is leaving me too.
• the company i have worked my entire adult life for, the last 24 years will be acquired by another company come the end of January. this will be a change like no other for me…
• i start my chronic pain program in january, this is supposed to change everything for me as far as my pain. the pain team says they have seen people leave this program, literally, with renewed lives. i’m excited to see how i am doing as i progress through the program.
  
  

i am thinking about my goals for the coming year, i know all of you are as well. i am wishing all of you less pain in 2010 than you had in 2009 and continued sharing and support. we hold each other up in the good times and the bad and together we will continue to make each other stronger.

thank you so much for making me a stronger and better person despite having fibromyalgia, this community of fibromites/ chronic pain people seriously ROCK! nothing can hold us down!

thank you for reading and stay cool!

[Via http://myfoggybrain.wordpress.com]

This Time

Today, I will keep stress at bay.  I will focus on my health and well-being even though I  woke up to being so stiff and tired and my only thought is staying warm and having my cup of coffee that I know should be caffeine free.  I am happy that perfection is not what I’m going to strive for.  Browsed some very good blogs on Fibromyalgia and exercise.  I have signed up at another exercise establishment and I’m already wanting to quit.  Of course, I recognize I really started out fast and now I’m paying for it which leads to extra soreness and stiffness which leads to numbness and tingling which leads to anger which leads to depression.  Yea, I’ve seen this cycle before.  This time I will temper my desire to exercise like a prize-fighter with some compassion for my body.  I can strive for every other day instead of everyday.

[Via http://ranjk.wordpress.com]

holidays and fancy ladies

I’m on holidays – woot!

I can’t believe how much better I feel just having -less stuff- to do each day/week/minute. We had such a fun day yesterday and last night I went to bed smiling! Not moaning or crying or stressing or worrying. I felt happy! Okay, so today I am fighting off yet another virus but at least without work or study or the girls school stuff, I can just look after myself and eat well and get better quicker – this is the plan:)

Yesterday we played fancy ladies. For me, this mostly meant painting my nails and even that turned out not to be as much fun as I had imagined. I was onto the second coat of Revlons creme brulee while watching the Paris news on SBS when it all went horribly wrong. We were speaking French, well parroting it I guess. We were probably saying ‘ten dead in horror pile-up in Toulouse today’ or something, but it was all about the accent and sounding fancy. I touched something then bumped something then grabbed something and just like that my nails were ruined! Had to clean the whole sodding lot off and settle for a bit of clear topcoat, more my style anyway:) Titch had purple sparkle polish -very fancy! And Lil had purple sparkle too but apparently she is too old to play fancy so she was a ‘funky lady’. Titch went all out with her outfit - Purple and green summer dress with a pale green shrug, pink sparkle shoes with diamontes, a wide fuchsia ribbon which doubled as a sash/neckscarf throughout the day, and my big black and white striped beach hat with an enormous emu feather poking out the side!!!

And when it came to dining out at lunch time? Fancy and Funky wanted meat pies and sausage rolls. Not quite what I had in mind for a girls day out but I bit my tongue, drank my thickshake and tried to avoid eye damage from the ever bobbing emu feather. The ladies got some new summer clothes and shoes before returning home to eat watermelon and play lego all afternoon. Bliss:)

Today we went to the library and stocked up on books and dvd’s to stay home and flomp about with. I have done the entire washing-folding-putting away x4  fiasco and even managed to keep the kitchen clean, make a proper lunch and home-made ice blocks for the girls. I am exhausted! but determined to get through the day without napping. The insomnia is still with me and I hope to beat it (with a stick if necessary) these holidays.

Eat well, Sleep well, Stress less, is the goal.

Au revoir m:)

[Via http://littleweirdy.wordpress.com]

A Very Promising Supplement for Fibromyalgia, D Ribose

Research shows Ribose supplementation is a beneficial addition to a comprehensive treatment program for fibromyalgia.1,2,3,4  Ribose is necessary for the production of ATP.  ATP is a chemical produced by you body that is responsible for the energy produced by your cells.  Ribose has been shown to decrease symptoms associated with fibromyalgia.

1. Gebhart B, Jorgenson JA. 2004. Benefit of ribose in a patient with fibromyalgia. Pharmacotherapy. Nov;24(11):1646-8.
2. Park, J.H., P. Phothiamat, C.T. Oates, M. Hernanz-Schulman, and N. J. Olsen. 1998. Use of P-31 magnetic resonance spectroscopy to detect metabolic abnormalities in muscles of patients with fibromyalgia. Arth Rheum 41(3):406-413.
3. Bengtsson A., K. G. Henriksson, and J. Larson. 1986. Reduced high-energy phosphate levels in the painful muscles of patients with primary fibromyalgia. Arthritis Rheum. 29:817-821.
4. Teitelbaum JE, Johnson C, St Cyr J. 2006. The use of D-ribose in chronic fatigue syndrome and fibromyalgia: a pilot study. J Altern Complement Med. Nov;12(9):857-62.

[Via http://drbradshook.com]

Your Muscles, a Common Cause of Pain and Confusion in Fibromyalgia

The most common misconception about fibromyalgia is that it is a myofascial  (muscle pain) problem.  The research shows us that fibromyalgia is a problem with the way your brain processes pain signals.1,2,3  How the brain becomes dysfunctional in its ability to normally process pain, is a topic for another post, but I’ll tell you in one word, stress.  To make improvements with fibromyalgia, you have to fix the problem with the abnormal processing pain signals in the brain, not just treat the muscle pain.  With that said, muscle pain is often concomitant with fibromyalgia, and should also be addressed.  Before we jump into discussing muscles, fascia, and connective tissue pain, let’s cover some foundational basics so we are on the same page when talking about this topic.

Fascia is a connective tissue just below the skin, which wraps organs, muscles, bones and nervea covering your entire body like a swimsuit below your skin.  Muscles connect to bones via tendons.  Your skeleton is able to move through the shortening and lengthening of your muscles, which are controlled by your nervous system.  Fascia, tendons and ligaments hold the skeleton together and give it support even when the muscles are relaxed.  Fascia, is also very complex in its structure and function, and is involved in the transfer of energy and loads through the entire musculoskeletal system.4  Now, all of these tissues can be injured, and will scar.  Many times, you will hear scarring of these tissues referred to as adhesions.  An adhesion of fascia, refers to a scar that causes two adjacent layers to stick together because of tissue damage.  The tissue will “adhere” to adjacent layers as it heals because of the chemical and “inflammatory soup” that makes the tissue layers sticky.  When these tissues scar and adhere to one another, they can become a source of movement dysfunction and pain.5  Adhesions and trigger points, can cause decreased range of motion and require increased energy expenditure of up to 300 percent, as compared to someone without these problems.5  Does it make sense that if you have increased energy requirements just to move your body, that you may fatigue much faster than someone without these problems?  To better understand what scarring in these tissues is like, picture gristle in a piece of meat.  The healed scar tissue or adhesion, is different from the original tissue, and as a result, muscle, ligament, and fascia movement can be impaired, cause pain, and easily become reinjured.

The reason fibromyalgia is commonly thought of as a muscle problem by many practitioners, is because in most cases, patients come in complaining of muscle pain.   Fibromyalgia diagnosis is also based on having at least 11 of 18 tender points at specific locations on the body.  I personally think that your symptoms and history are more important in the diagnosis of fibromyalgia than testing the tender points.  Unless the your muscles were injured at some point, or have been under high levels of mechanical stress, like from performing repetitive tasks at work, poor ergonomics when standing or sitting, lifting with poor form, or from poor posture, then your muscles should not hurt.  There are some exceptions for muscle pain, like lactic acid build up, but in large part, your muscles shouldn’t hurt on a regular basis.  With fibromyalgia patients, the fact is that the normal sensory information being sent from the nerves throughout your body to your brain, are being interpreted in an abnormal way.  This loss of normal interpretation of pain signals means that fibromyalgia patients often feel full body pain, or pain that moves around to different areas.  Most doctors don’t know that this is the problem, and they only focus on treating (muscle pain) with medications, and fail to address what is usually the major problem, abnormal pain processing in the brain.  Currently, there are no medications to treat the brain for abnormal pain processing.  Our treatment, using Brain Based Therapy (BBT) targets areas of the brain that have a decreased impulse or rate of firing.  BBT works on strengthening neural networks and increasing firing of the brain’s weak areas.  The treatments work because of neural plasticity, and the brain’s ability to “rewire” and strengthen weak neural networks. This type of treatment has been successful clinically, in the treatment of fibromyalgia and many chronic pain conditions.  These therapies were pioneered by the country’s leading chiropractic neurologist, Frederick Robert Carrick, DC, PhD, DACAN, DABCN, DACNB, DAAPM, FRCPN, FACCN, FAAFN, FEAC (Neurology), FACFN, FABVR, FABES, FABCDD, FICC.

1 Burgmer M, Pogatzki-Zahn E, Gaubitz M, Stüber C, Wessoleck E, Heuft G, Pfleiderer B. “Fibromyalgia unique temporal brain activation during experimental pain: a controlled fMRI Study.” J Neural Transm. (2009) Jan;2(1):26-40.

2 McCabe CS, Cohen H, Hall J, Lewis J, Rodham K, Harris N. “Somatosensory conflicts in complex regional pain syndrome type 1 and fibromyalgia syndrome.” Curr Rheumatol Rep. (2009) Dec;11(6):461-5.

3. Chervin RD, Teodorescu M, Kushwaha R, Deline AM, Brucksch CB, Ribbens-Grimm C, Ruzicka DL, Stein PK, Clauw DJ, Crofford LJ. 2009. Objective measures of disordered sleep in fibromyalgia. J Rheumatol. Sep;36(9):2009-16.

4. Vleeming A, Pool-Goudzwaard AL, Stoeckart R, van Wingerden JP, Snijders CJ. (1995) The posterior layer of the thoracolumbar fascia. Its function in load transfer from spine to legs. Spine. Apr 1;20(7):753-8.

5.Greenman, P.E. 1996. Principles of Manual Medicine. Second Edition. Baltimore: Williams & Wilkins.

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[Via http://drbradshook.com]

Update of progress

I haven’t written an article here for ages.. well so it seems anyways.. Right this is where I am right now and its a long way from those dark days that were happening to me for weeks, months and the best part of this year… I am now getting back to normality or whatever that is.. but I am on the mend and long may it continue…

What has brought about this dramatic change in my condition.. Well to be honest, I stopped taking just about every tablet the doctor had told me to take, the amitrypeline were making me mental and sleepy adding to my already sleepy self and I think it took the last bit of energy out of my system. I also started forcing myself when I had to rest, was to stay awake and try anything to get my mind going…

I am not cured not by any means, but what I will say is I feel totally re-energised and alive, my moods have changed back to me being my normal funny self what a difference a few weeks makes but I have tried so hard to get to this point and didn’t think it would happen to be honest, but I hadn’t given up hope…

I dont know if this blog will ever help anyone but its a very very small record of maybe how I was feeling when I had the energy to type out some lines.. I hope though people can read this and they can see an end to Fibromyalgia or at least to their nightmare.. keep trying and keep your chin up, remember your special and the world needs you..

Not sure if this will be my last post but for now, I dont have anything to write about FM and the chronic fatigue I was suffering “and my family too”…

Thanks to anyone who will ever come across this blog..

[Via http://meandmyfibro.wordpress.com]

My Fibromyalgia Update

Fibromyalgia has been, at least for me, a constant balancing act of trying to use the right meds at the right time and balance that with activity and rest. Although I may find a regimen that works great one day, there is no guarantee that it will continue to work another day.

So I’ve been playing with sleep aids, which seems to be where most of my troubles lie. I don’t remember when I’ve had a good night sleep and woke up refreshed (actually, I do remember one day in February of 2007). How sad.

And lately I’ve been having lots of nights with active dreaming again. Makes me tired just to think of it. I’ve had lots of dreams about houses; so big and complicated you need GPS just to get around.

One of my really good friends is a nurse and also very in to natural medicine. She works the late shift so sleeping cycles can be very challenging for her, too. Lately she’s tried L-tryptophan, the amino acid that’s found in turkey that makes everyone sleeping on Thanksgiving afternoon. She said it has really worked great for her.

So I decided to give it a try. Wow! I’ve actually gotten 2 good nights sleep (not to say they were dreamless) but I wasn’t exhausted when I woke up. I actually feel good! Amazing!!!! I forgot how much energy I could have when I feel refreshed!!!! It’s definitely an exclamation point day!!!! I’ve already offered up thanks to God; now I’ve got to call my friend. She’ll be so pleased for me.

I hope this continues for a long time, but I’ll enjoy it for however long it lasts. I’m off to conquer the world!!!

Until next time…

[Via http://glaumland.wordpress.com]

If Wishes Were Hotdogs

Wow, it’s been forever since I blogged. It hasn’t been because I don’t have anything to say, it’s just been because…well, life has been wacky lately.

I’m finally off the meds that turned me into an anti-social zombie. So now I’m spending lots of time trying to get my life back in some sort of order. It’s been challenging, but it’s much better than the alternative. I feel like a real person again.

I was feeling sorry for the dogs, since the time change has meant that we don’t spend as much time outside with them. So Santa came early and brought them a couple Kongs (hard rubber toys with room inside for treats).

They were so happy, because tonight I filled them with hotdogs! The pups didn’t know what to do…they kept running back and forth to make certain the other Kong didn’t have more goodies than theirs, then ran back to try to figure out how to lick a hotdog out of the center.

Ha, ha, ha…mind games with puppy dogs – I can definitely win that battle! (Probably)

Until next time…

Progress

Im feeling a bit more upbeat today and as you see from my last post, sometimes it just gets a bit much but then you grit your teeth and grin and bear it and just get on with what life throws at you..

My freind came up today and started the first part of his case study and tried out some techniques for reversing my mental attitde to F.M and how it affects me and probably help others around me too as they cope with me..

I will try and get some notes from him and post them online, from what I can say from the first session.. its good and his time will be well spent “i hope” further updates will keep you informed of my progress…

Anyways I hope this week holds out better, today I only had two real points of fatigue.. heavy though but im still challenging it as best I can…

Krakow Photos

Sorry for not getting these photos up sooner – I work at the local performing arts center and we had RENT in town last week, so I have been extremely busy between working the ticket office and seeing the show five times! I am a huge Anthony Rapp fan, and as he and Adam Pascal were both in the tour, I soaked up as much RENT as I could.

Now back to reality…I have added the photos from Krakow, Poland. I’ll attempt to get Gdansk and Warsaw up later this week, now that the passionate singing and acting of Anthony Rapp aren’t in town to distract me.

What mattress is better for my bulging discs

I have a Natures rest mattress that is about 4 years old. I have bulging
discs in L4/L5 region and it is not comfortable sleeping on the natures
rest. I have a Kingsdown emerald crowne which better but no perfect. I
am 5′3″ and about 200 lbs and my husband is 5′10″ 185 lbs. Any thoughts
on a better mattress

You might consider an interlocked coil system….like the Sealy Posturepedics. The more rigid base support works well with disc problems. The two you’ve had provide a more contouring support, which obviously doesn’t to work for you. A Reserve Series Posturepedic in a cushion firm with a latex topper will give you support, comfort and longevity.

Help for Fibromyalgia Sufferers

Fibromyalgia and Exercise

 

Gentle exercise from EverydayHealth.com

from WebMD

If you have fibromyalgia with painful tender points, deep muscle pain, and fatigue, exercise is probably the last thing on your mind. Yet did you know that exercise may be just what the doctor ordered? Whether it’s daily walks, stretching, swimming, yoga, tai chi, or Pilates, low-impact exercise programs can keep you fit in spite of your fibromyalgia and may help reduce pain as well.

Why Is Exercise Important for Fibromyalgia?

Experts believe that exercise is essential for keeping muscles strong and flexible, controlling weight, and helping you stay active in other areas of life. In fact, exercise and activity allow patients to have some control over fibromyalgia and the amount of pain they feel.

It used to be that doctors thought that exercise might worsen fibromyalgia symptoms or accelerate the disease. So doctors encouraged patients to seek rest, not activity. But recent scientific studies have shown that, for most patients, range of motion, strengthening, and aerobic conditioning exercises are safe and necessary.

Does Exercise Boost Endorphins in Those With Fibromyalgia?

Studies show that exercise helps restore the body’s neurochemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins — pain-fighting molecules that may be responsible for the well-known “runner’s high.” Endorphins help to reduce anxiety, stress, and depression.

Does Exercise Boost Serotonin in People With Fibromyalgia?

Serotonin is a neurotransmitter in the brain that scientists have found to be related to fibromyalgia. Neurotransmitters are brain chemicals that send specific messages from one brain cell to another. While only a small percentage of all serotonin — 1% to 2% — is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods.

Studies have found that too much stress can lead to permanently low levels of serotonin. That, in turn, can create aggression. An increased level of serotonin in the brain is associated with a calming, anxiety-reducing effect. In some cases it’s also associated with drowsiness. A stable serotonin level in the brain is associated with a positive mood state or feeling good over a period of time. Lack of exercise and inactivity can aggravate low serotonin levels.

How Is Serotonin Related to Women and Fibromyalgia?

It appears that women may have a greater sensitivity to changes in this brain chemical. Mood swings during the menstrual cycle, menopause, or following the birth of a child may be hormonally induced through the action of the hormones on neurotransmitters.

Various factors — such as sunlight, certain carbohydrate foods, some hormones, and exercise — can have a positive effect on serotonin. Exercise acts as nature’s tranquilizer by helping to boost serotonin in the brain. Studies have also shown that exercise triggers the release of epinephrine and norepinephrine, hormones that are known to boost alertness. For those who feel “stressed out” frequently, exercise will help to desensitize your body to stress.

What Are Other Benefits of Exercise for Those With Fibromyalgia?

Regular exercise benefits people with fibromyalgia by doing the following:

• burning calories and making weight control easier
• giving range-of-motion to painful muscles and joints
• improving a person’s outlook on life
• improving quality of sleep
• improving one’s sense of well-being
• increasing aerobic capacity
• improving cardiovascular health
• increasing energy
• placing the responsibility of healing in the hands of the patient
• reducing anxiety levels and depression
• relieving stress associated with a chronic disease
• stimulating growth hormone secretion
• stimulating the secretion of endorphins or “happy hormones”
• strengthening bones
• strengthening muscles
• relieving pain

What Types of Exercises Work Best for Fibromyalgia Symptoms?

Some new findings suggest that exercises such as walking, strength training, and stretching activities are effective at improving physical, emotional, and social function. They also are effective in addressing key symptoms and self-efficacy in women with fibromyalgia who are also being treated with medication. Other studies point to long-term aquatic exercise programs — such as water aerobics — as being effective in reducing symptoms and improving the health-related quality of life of the participants.

As you begin your exercise program, focus on three different types of exercise:

• Range-of-motion or stretching exercises. These exercises involve moving a joint as far as it will go (without pain) or through its full range of motion. Range-of-motion exercises or stretching will help you maintain flexibility in your muscle groups. Talk to your doctor or physical therapist ab

  Light weight training from PsychologyToday.com

  out range-of-motion exercises. They can explain how to do these exercises properly and give you some guidance if you have difficulty performing the stretch.

• Endurance or conditioning exercises. When you increase your endurance threshold with cardiovascular forms of exercise such as walking, biking, or swimming, you do more than simplystrengthen your muscles. You also condition your body, tone your muscles, and build coordination and endurance. In addition, endurance exercises help with weight loss.
• Strengthening exercises. These exercises help to build strong muscles and tendons needed to support your joints. Some studies show that strengthening exercises may improve fibromyalgia symptoms. Be cautious not to hurt yourself when doing strengthening exercises. A personal trainer or fitness expert can explain how to use resistance, starting slowly and increasing as you build your strength.

Can Low-Impact Exercises Help Flexibility and Stress in Fibromyalgia?

Low-impact aerobic exercises have been shown to improve symptoms and restore muscle strength in people with fibromyalgia. Some helpful exercises include:

Yoga pose from Yoga For Blood Pressure Blog

• Yoga – an ancient form of exercise that can reduce stress and relieve muscular tension or pain by improving range of motion and strength. Practicing yoga for fibromyalgia when you are feeling tense or anxious may help you reduce stress and the risk of injury when you are on the job or at home.
• Tai chi – a series of flowing, graceful movements that can give you a good workout and stretching regimen. Studies show that tai chi participants also increase their sense of balance, can bend easier, and are better able to do household tasks. With fibromyalgia, tai chi can keep your back flexible and strong.
• Pilates – a form of exercise that focuses on breathing and strengthening the torso muscles. With Pilates, an instructor will help you work on postural muscles that are essential to supporting the spine.

Can Water Therapy Help People With Fibromyalgia?

Yes. If you have fibromyalgia, water therapy can give you good results. Water therapy strengthens and conditions as you move your body against the water. Water supports your weight during movement, which helps alleviate any impact on muscles and joints.

The water alleviates the force of gravity and provides buoyancy as well as mild resistance. Whether stretching in the water, using a kickboard as a floatation device as you push and kick, or swimming using slow, gentle strokes, water therapy can provide a gentle form of conditioning. That makes it quite beneficial for people with fibromyalgia.

How Can I Get Started Exercising With Fibromyalgia?

If you have fibromyalgia and want to start exercising, it’s important to start slowly. Begin with stretching exercises and gentle, low-impact activity, such as walking, swimming, or bicycling. Muscle soreness is normal when you are just starting an exercise regimen. But if you have sharp pain, stop and call your doctor. You may have overworked or injured your muscles.

Are There Exercises to Avoid With Fibromyalgia?

There are no particular exercises to avoid if you have fibromyalgia. Aerobic exercise (running, jogging), weight training, water exercise, and flexibility exercises can all help. Golf, tennis, hiking, and other recreational activities are also healthful. If you have other medical problems or if you’re planning more than a moderate-intensity exercise program, discuss your plan with your doctor before you start.

More information at WebMD.

What if Conventional Exercise is Too Painful or Difficult for Some Fibromyalgia Sufferers?

From ProHealth wesbite, full article here.

Fibromyalgia and ME/CFS specialist Dr. Charles Lapp suggests redefining “exercise” for Fibromyalgia  patients.  Perhaps a better word would be “movement” or “activity.”  He says the main thing is to avoid strict bed rest, which causes deconditioning, which in turn makes symptoms worse.

Important FM “exercise” tips:

• Move your body as much and as often as you are able – even if it’s just walking to the kitchen for a glass of water.
• Deep breathing exercises – learning to breathe from the lower part of the diaphragm – is essential.

  Deep breathing from Anxiety Therapy Online

  Shallow breathing increases neck and shoulder pain and can cause chest tightness, shortness of breath and spasms in the postural muscles.  Deep breathing eases tension and improves the circulation of oxygen in your body.

• Stretch your muscles periodically throughout the day.  Begin slowly with seated stretches.  After several weeks, if you are able, progress to standing stretches.
• When you first begin any new type of exercise, begin very slowly.  Depending on the severity of your illness, start with as little as one minute and build up very gradually (i.e., spend several weeks at each level).
• Take frequent rest breaks.  Try resting three minutes for each minute of exercise.  Once you’ve moved into strength training or cardiovascular exercise, it’s a good idea to only exercise every other day, allowing yourself a day of rest between workouts.
• Break up your exercise sessions.  Five three-minute sessions are better for FM patients than one fifteen-minute session.
• For those who are able to tolerate a longer period of exertion, water exercise may be a good option.  Water’s buoyancy decreases the effects of gravity, displacing 85 percent of your weight.  As a result, it takes less effort to move because you don’t have to support your whole weight.  Also, immersion in water promotes relaxation, reduces muscle fatigue and lessens pain perception.

BEWILDERED ABOUT APPLYING ESSENTIAL OILS

Yesterday I ordered the three essential oils I was told might help with my multiple chemical sensitivities.  Oddly, what caused my greatest confusion was how to apply this oil.  The aroma therapist told me to use 5 drops of Lemon, 5 drops of Geranium Egyptian, and 2 drops of Benzoin.  Now what?

I had taken a book out of the library called Essential Oils by G. Gary Young and I began skimming this rather large text trying to discover what I do when these oils arrive!  I learned that the English model of application suggests that you dilute a small amount of the essential oil in a vegetable or massage oil and rub it into your skin.  The French model prescribes undiluted topical application or even to ingest it by putting it on a piece of bread!  And the German model focuses on inhaling the oils.

With that information, I was still trying to figure out if I can fill a container  with this combination of drops or do I mix these drops each day.  If I combine the drops for more than one day, I still had to determine how to measure 25 mls each time!  I began thinking that a syringe would be ideal.  The aroma therapist mentioned adding the oils to a favorite cream or adding them to water and spritzing it on me.  However, I am still back to the same dilemma of knowing how much to use!  She seemed to reiterate the importance of using just that amount each day and no more.

I finally ordered two containers – one a small jar and the other a serum spray.  I still have no idea what I am going to do when the oils arrive.  In fact, I have begun wondering if I should order a diffuser and just sit by it and burn the oils.  But then how long does it take for the oils to burn?  I am rather embarrassed that I am stuck on a problem that is most likely obvious to everyone else!  However, I admit that I am bewildered!

Why being stuck in a perspective keeps us, well, stuck...(and unwell)

“Out beyond all ideas of right-doing and wrong-doing there is a field – I’ll meet you there”
Rumi, Sufi mystic and poet

One of the lessons I have been learning recently is how being attached to a particular outlook or perspective can prevent us from getting well. These perspectives are indicative of underlying beliefs and paradigms about life, which become so transparent we do not even see them. However, not seeing them does not mean they are not there or are not affecting our overall health.

So why do I say that being stuck in a perspective can prevent us from getting well, ie, keep us ill? Because underneath the perspective / belief / paradigm will usually be some FEELINGS which we are usually subconsciously avoiding by staying stuck in our perspective. It is these deeply repressed feelings which are blocking our cells and keeping us less than well – infact literally internally divided – which we need to get in touch with.

The interesting thing is, these perspectives usually play out as ‘the need to be right at all costs’. And at some point, we come to realize that if we wish to make progress, we are going to have to go beyond ideas of right and wrong. This is a huge ask for many people, as it requires humility, courage and vulnerability, plus the ability to feel old unwanted feelings.

To give an example which will help understand what I am talking about:

Last year I agreed with a friend to work on a project. We decided which tasks each of us would do, and due to his tasks needing to be completed first, I waited until he had completed his before beginning. The next thing I knew, a week later, I received an email to say he had completed both sets of tasks. My feathers were immediately ruffled as I had been looking forward to my part of the project. I immediately put my Mickel Therapy tools into place by saying ‘How I felt’ about what had happened (key 2) and what I would have liked (key 3). This was all well and good and my body felt better for speaking my truth.

However, he then rejected what I said, (in other words, he had ‘another perspective’, while I had mine), and it was apparent that ‘never the twain shall meet’. I was deeply hurt and shocked that he did not see ‘my point of view’ as our agreement over tasks had been quite clear.

At that point, I realized that the only person that could do anything about this situation was me. I started to ask myself, OK, what’s this situation REALLY trying to teach me? And more to the point, what I am actually FEELING?

I realixed that huge feelings of betrayal and injustice were rising up inside. And I sensed that I had come to that critical point where I had to ‘let go of the story’ (whatever that story was, and whether I felt I was ‘right’), and give myself permission to allow and feeling those feelings.  And to allow myself to feel the feelings without any attachment to the story my mind was attaching to them.

So I very consciously chose ‘yes, I choose to feel what I am feeling right now’, without being attached to the story. And so the healing commenced.

It was excruciating, as I tapped into the pain in my heart that had been there for years, which I was avoiding by staying in wanting to be right. I felt like my heart had been sliced open with a pairing knife, and that a writhing mass of snakes and puss was pouring out. (Sorry for the less-than-savoury graphic description, but this was exactly what it felt like).

There was nothing logical to this event. And there was nothing I could do to lessen the pain by thinking about it or rationalizing it away. I simply had to feel it. These were feelings that had been ‘festering’ inside of me for years, and I had been avoiding feeling by protecting and surrounding the heart with criticalness and judgement. It was time to let it go. The process lasted about 3 days, where I went through despair and heart-pain like I had never experienced before. Even so, I knew that a great healing was taking place, and that this was a gift.

And for the first time I understood the saying by the wonderful mystic Rumi “Out beyond all ideas of right-doing and wrong-doing there is a field – I’ll meet you there”.

When we learn to let go of our perspective and transcend right and wrong, (even if we know we were ‘right’), we take ourselves to a bigger perspective where we see that everything that happens is there to help us evolve into a better and bigger person. From a health perspective, that pain that had been inside my heart, blocking my cells, was gone forever, freeing up my ability to be more compassionate and loving towards both myself and others. Even though it was emotionally excruciatingly painful at the time, I am eternally grateful for the lesson.

Taking Charge

I went to see my primary doctor today. We had a good chat about everything and anything that has transpired over the last 2 months since my last appointment with him. There was quite a lot of information to give him. From my adventure with facet joint injections in my lower back to swine flu. I was very up front and honest and told him that I needed him to listen to me. I told him that these medicines for this disease aren’t working for me. They are actually making me sick with other things that are requiring an additional medication to help with relief. My body is becoming septic and turning on itself. I refuse to have to take medications for every little thing that crops up. I will not be medication dependent. That is insane!

He told me that sometimes doctor’s couldn’t cure things and sometimes in their eagerness to try to help with the cure, they inadvertently do the opposite. The smart ones back track and try a different method later. He is taking me off the meds for right now. Praise God! He said he wanted to see me back in a month and we may try a different route. I do know that right now, this is the destination to go. I also realize that with this decision it will bring me back to the living hell I have experienced the last 13 years of my adult life. Better the devil you know than the one you don’t, right? I least I can look this one in the eye, grit my teeth, and keep my mouth shut daily about how I really feel. Masks I am good at.

- Gigi

Egad, I have become a stereotype

I was chopping vegetables last night when I was suddenly overcome with a frig-awful pain in my shoulder and neck.

Afterwards I thought of that TV ad for Fibromyalgia and thought oh god, i’ve become the fibromyalgia woman! I would have laughed if I hadn’t been crying.

I lay down for a bit once the veggies were cooking but the pain got worse, going up into my jaw, face and scalp. When the dinner was ready and served up to the kids,  i jumped into a hot shower, then rubbed deep heat in, took ibuprofen, drank hydrolyte and went to bed. Quick chat with sidekick then tried to sleep. The fibro-lady tried to sleep.

Potential Chronic Fatigue Syndrome Breakthrough a Reminder of 'Patient No One Listened To'

By Shawn Kennedy, MA, RN, AJN interim editor-in-chief

by obo-bobolina/via Flickr (Creative Commons)

The other day I saw a news report from Reuters noting that a study in the journal Science found that a retrovirus linked to prostate cancer may be implicated in chronic fatigue syndrome (CFS).  The report explains that researchers “found the virus, known as XMRV, in the blood of 68 out of 101 chronic fatigue syndrome patients (67%). The same virus showed up in only 8 of 218 healthy people (3%).”  The hopeful take-away message is that IF this virus does have a role in the development of CFS (and that’s still to be proven—all that can be said now is that this study found it to be predominant in people with CFS in comparison to those without CFS), then researchers can develop medications to treat this disease.

But what I took away was a different message.  I remember when CFS was considered one of those nebulous, often self-diagnosed syndromes that led health care providers to attach some skepticism to whatever a patient who claimed to have one of them might say. There have been other diseases or clinical problems that have been dismissed by clinicians only to be verified later—fibromyalgia, restless legs syndrome, and “chemo brain” (the cognitive difficulties that often occur after chemotherapy; though a complaint of patients since the 1970s, it has only recently been verified by research) come to mind. There’s also another one, Morgellon’s Disease, the existence of which is now being researched by the CDC. 

We’ve finally accepted the premise that pain is what the patient says it is.  Why shouldn’t that extend to other complaints?  Why is the burden of proof on the sufferer?

As clinicians in an evidence-based environment, we look for physiologic changes that can be screened, measured, palpated, auscultated, and monitored—we want to see or verify symptoms for ourselves.  If you practice long enough, you’ll have at least one story about “that” patient who no one listened to—the one who, regrettably, someone should have listened to.  Do you have a story to share?

TORTOISE-LIKE MOVEMENT, BUT IT'S STILL PROGRESS!

DAY 36, 37 : It may not always look like my health is improving, but like a tortoise, I am still moving forward.

When Greg and I were in Spokane, he commented how we were here ten years ago. I replied, “ I just don’t remember much of that trip.” He smiled and said, “That’s because you spent most of that time in the hotel room, You were sure ill.”

We had driven with our daughter to Spokane for her to play in a basketball tournament. I did my best to watch her play if she had games in the morning. I do remember when another player ran into her and broke her collarbone. I remember Greg concerned whether I should be going into the hospital with them but I was determined to be with her and God gave me the strength to do that. It’s funny, but during these years of illness , I often don’t remember much about where I was, but I will have strong recollections of how I was feeling. When I relive how I was feeling in the hotel room in Spokane nine years ago, I am grateful for the health I have now.
On Tuesday morning, I was able to walk slowly through the Riverfront Park. The weather change had affected the pain and stiffness in my arms and legs, but I was still strong enough to take this stroll. And even better, after my afternoon nap, we had a great meal at a restaurant called Moxie – which we thought was the franchise restaurant Moxies, but the food was even tastier. Then we walked across the street to the Fox Theatre that was built when ceilings were ornately decorated as well as the walls. We sat down in our seats, the lights turned down, and only the  stage was lit. Bryan Adams walked onto the stage while carrying his acoustic guitar and he began to sing song after song. Occasionally, a pianist would sit at the grand piano and accompany him. I just sat there overwhelmed by gratitude that I could be here since yesterday it looked rather doubtful. And here I was sitting beside my terrific husband who leaned over and kissed me after a beautiful ballad! And as I enjoyed listening to the music, I felt such peace and certainty since I knew that my health may be moving forward like a tortoise, but it is still progress! After the concert, we walked back to our car that was parked at a meter. As we sat in the car, the truck in front of us slowly backed into us and pushed in the grille. Even this incident could not dent my optimism.

my list

I’ve been pretty sad the last few nights. I’ve tried to keep it to myself, but I love to write about me…even if there is nothing interesting to write about.

When I think about all my illnesses…I feel overwhelmed, sad, manic, tragic, angry, revengeful, pissed off and in general FUCKING PSYCHOTIC!!!

*  Since 11 1/2, I was diagnosed with Vitiligo…and with that comes a weakened immune system.

*  Shortly after I was diagnosed with Depression and GAD (Generalized Anxiety Disorder.)

*  Skip ahead to my mid-20’s and I was diagnosed with Severe Depression and Anxiety, Agoraphobia, OCD (Obsessive Control Disorder) and Panic Attacks.

*  In my early 30’s I was noticing something not right; feeling sick all the time. Around the age of late 32 or early 33 I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and unbelievable Insomnia.

*  Ages 33-present, I’ve suffered from horrible allergies and allergic reactions.

In about a week I turn 35. I still have all the above issues, and I probably will till the day they shove me in the oven and burn it all away. The diseased mind, body, skin and central nervous system…all of me…is fucked up. Now wouldn’t you be sad too?? ;c(

perfect timing!

Last night as I was getting ready for my much anticipated bath (since for the Dermatologist “patch tests” I could not shower or bathe Tuesday through Friday of last week,) I took my shirt off and just began to sob in a very manic way. Ever since I’ve been sick, on top of that I have to like fucking take my clothes off for doctors to examine this or that…blah, blah. It’s a very violating feeling, even though I understand it and know it’s in my best interest. But everything with the doctors, the drives downtown, the needing my mom and Pedro so much and being so sick and hurting…I just was looking at myself in the mirror and balling my eyes out.

I came back to my room to shut off my laptop, and FaceBook was still on the screen…and I had a message from a friend I went to Grade School with back in the mid-to-late 80’s. It was a guy that I wasn’t really friends with per say, but ya know…we knew each other to some degree. He wanted to apologize for “teasing me” back in my awkward years when I was developing my vitiligo skin disorder and severe depression. I told him that it meant a lot to me….and I meant it in the biggest way.

We chatted for hours about his life now, my life now…and it was so sweet. I didn’t feel ashamed to be me. And I was so happy to hear about his romantic life with another classmate I went to school with. How cute that they hooked up after all this time, and now they are having a baby.

He kept asking me for specific things he said or did that might have hurt me. And I told him it was so long ago, it’s OK. We were kids then, too honest for our own good. Now we’re grown up and more sensitive and mature, and that everything was cool between us. But the way he kept asking, really touched me. Like he really wanted me to know that I was an OK person…and that it hurt him to know that maybe he hurt me.

He is the ONLY person from my past to ever of apologized for teasing me during my awkward ugo  pre-teen era. I told him the worst of the teasing was from High School…but the girls I talk with now from on there just accept me and like me….and it’s like…so refreshing to feel…accepted and understood.

I can’t quite say my life is peachy-fucking-keen because of any of this…but it probably helped heal a very aged self-esteem wound that I’ve carried around with me for 20 some odd years. I doubt he would ever read this, but in case he does…THANK YOU!!! It’s wonderful to finally become friends. (((HUGS to you and your lovely lady)))

One Month - Pain While Flying = Zero

Whoever says you can’t do Egoscue while on vacation is just wrong. If you don’t do it during vacation you are just hurting yourself. It only took me a half hour to make sure I got an Egoscue work-out in. My girlfriend were either watching the news or jumping in the shower and I was getting ready for the day. So I didn’t hold anyone up on our busy time schedule. And I felt amazing during my vacation.

I can only think of one thing different that I did this time before flying. You guessed it my Egoscue menu. I think it made my four hour and forty-five minute flight so much better. I am that person that usually just can’t sit still, I move or cross my legs then un-cross them, then move again. This flight I was so comfortable the whole time. Never got fidgety or felt any discomfort in my shoulders or lower back.

New menu today and I just can’t wait to see what is next.

IT GETS A LITTLE BIT BETTER BY STANDING TALL

DAY 24 -26:  Pay attention to my posture.

Since I have been doing some simple yoga poses, I have become increasingly aware that my posture is poor.  I used to stand tall keeping my shoulders upright but I have allowed my body to reflect the pain I feel.  And today, feeling a little more discouraged by my symptoms I notice my poor posture is reflecting my poor mood. When I googled “good posture”, I came across the web-site http://www.sixwise.com.  It mentions some of the benefits of good posture:

Be able to use your muscles more efficiently because your bones and joints will be in the correct alignment.  This will result in less fatigue, as your body will require less energy to move around.

Prevent your spine from becoming fixed in an abnormal position.  This can lead to constricted blood vessels and nerve, and problems with muscles discs and joints, which can lead to headaches, fatigue and even problems with organs and breathing.

Experience fewer strains and pains because you won’t be overusing certain muscles and joints, nor putting unnecessary pressure on bones, joints and organs.

Put less stress on the ligaments holding the spine’s joints together.

Most web-sites regarding posture said similar such things such as sit up, stand straight, do stomach exercises to strengthen back muscles.  However, one web-site promoting the Alexander Method suggests that “Just building more muscle (so that it can stand more strain) may relieve the pain short-term, but it will also give you the strength to tighten yourself up even more.”  http://www.smilingbackmethod.com/articles/posture-p2.htm

Well, this is certainly a dilemma!  I certainly don’t need to increase any fatigue and pain and decreased energy by having poor posture, nor do I want to increase those symptoms by improving my posture the wrong way!! Just for fun, I typed in “Stand tall” on youtube.com and of course there was Burton Cumming’s song  “Stand Tall” However, I then clicked on Dirty Head’s “Stand Tall.”  The lyrics are about a relationship and yet I related to the chorus, “Stand tall/ Stand strong/ It gets a little better now”.  I believe that just standing tall – through mountain pose, or just simply pulling my shoulders back and stretching my back ligaments up long – is my body’s way of communicating to my brain that “It gets a little better now.”

Why Does The Massage Need To Be Painful

Every-time I get a massage on my back it is always so painful. It feels like all my muscles are so tight that when the massage starts I might even start to cry.

So I’m off to talk with my Egoscue therapist – the discussing touched how my upper body muscles are being overworked.

When I bend over to touch my toes I bend from the middle of my back instead of my hips (to get back up I have to use my upper body and mid back). When I sit I slouch right in that mid back area (Rounding my shoulders and my upper back is hard at work to hold me there). Driving in my car I lean my seat back because I thought it was more comfortable (my shoulders and upper back do so much work while I drive). I am starting to get the picture – for me to enjoy a massage I need to stop overworking muscles and start getting my hip-flexors to fire. Ok hips its time for some work.

Like many people I do my whole menu but during the day I am looking for just a little boost to get me working the right muscles. My boost is Supine Foot/Circles and Point Flex and of course the lovely Airbench. These two e-cise seem to stabilize my pelvis and I feel great after doing them!

Watch out massage therapists I am going to be ready to enjoy my massage very soon!

Stretch The Hip Muscles - Reposition the Pelvis :E-cise of the Week

Standing Quad Stretch

1. Stand in front of and with your back to a block or chair; your feet should be pointing straight ahead and hip width apart

* If needed, stand facing a chair or doorjamb which you can hold onto for support and balance

2. Lift one foot and bend that leg back, placing the top of the foot on the chair/block

* The height of the foot placement dictates the amount of stretch in the thigh muscles

3. Keep your hips and shoulders square to the wall

4. Look down and be sure that your knees remain pointed straight ahead and in line with each other

5. The key is to make sure that the hip of your down leg is not jutting out to the side. You must keep your hips level

6. Now, try to tilt your butt under

7. Hold 1 Minute

8. Switch legs and repeat

Purpose: This exercise stretches the muscles of the hip and repositions the pelvis

Standing Quad Stretch

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is:

Arthritis, chronic tendinitis caused by hypermobility, and fibromyalgia

2. I was diagnosed with it in the year:

2009

3. But I had symptoms since:

2001

4. The biggest adjustment I’ve had to make is:

Asking for help.

5. Most people assume:

I wouldn’t presume to know what others assume.

6. The hardest part about mornings are:

Waking up and getting out of bed.

7. My favorite medical TV show is:

House, not that it’s accurate, but it’s amusing.

8. A gadget I couldn’t live without is:

My laptop.

9. The hardest part about nights are:

The insomnia…  The lying awake begging to fall asleep.

10. Each day I take __ pills & vitamins.

Somewhere between 1 and 12 or so.

11. Regarding alternative treatments I:

Love my chiropractor, but wish he was covered by my insurance.

12. If I had to choose between an invisible illness or visible I would choose:

I don’t have to choose.  Some days I am visible (crutches/rollator) and some days I am invisible.

13. Regarding working and career:

I’m a full time and then some student also doing part-time student teaching and have recently been offered two student research assistant positions!  I’m accepting both and will make it through because school is a physically passive venture, as is being a research assistant.  The student teaching is hard, though, and I wonder how I’ll ever manage to become a full time teacher.

14. People would be surprised to know:

How little I can actually do for myself and my home.

15. The hardest thing to accept about my new reality has been:

All of the changes that I have to make in my life.  That this me is not the same me I was.

16. Something I never thought I could do with my illness that I did was:

Fly to Florida over the summer for a conference.

17. The commercials about my illness:

Are dumb.  A person with true fibromyalgia, even on meds, could not stand all day at a bakery.  Meds do not suddenly make you a typical person.  They just help you (hopefully) manage most of the symptoms most of the time.

18. Something I really miss doing since I was diagnosed is:

Going to any social event, really.  And ballroom dancing…  and sleeping.   I miss sleeping…

19. It was really hard to have to give up:

My hobbies of dancing and playing the piano, as well as cross-stitch…

20. A hobby I have taken up since my diagnosis is:

Knitting.  It keeps my hands busy, and is easier on them than cross-stitch.

21. If I could have one day of feeling normal again I would:

I don’t know, and I don’t really want to think about it, because it would just remind me more of how much I’ve lost.

22. My illness has taught me:

How to ask for help.  that I’m not perfect and don’t have to be.

23. Want to know a secret? One thing people say that gets under my skin is:

When they compare what I’m going through to their badly sprained ankle, etc.  Please don’t think you know what I’m going through.  You don’t.

24. But I love it when people:

Offer to help and do simple things like hold open a door.

25. My favorite motto, scripture, quote that gets me through tough times is:

“The Son of God suffered unto death, not that men might not suffer, but that their sufferings might be like His.”  –George MacDonald.

“And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infimities.”

Alma 7:12 (from the Book of Mormon)

Christ has felt my pain and my sorrow and knows what I am going through, and he is there for me, to comfort me and lift me up.

26. When someone is diagnosed I’d like to tell them:

You’re not alone.  There is a whole community of individuals with invisible illnesses out there, as well as people who truly love you and care for you.  Even on the days when you feel alone, you’re not, because Christ is still there for you.

27. Something that has surprised me about living with an illness is:

How many other people live with chronic illnesses.  It wasn’t something I was really aware of until I became a person with a chronic illness.

28. The nicest thing someone did for me when I wasn’t feeling well was:

I am so thankful for the women from my church who have brought in meals and cleaned my house for me.

29. I’m involved with Invisible Illness Week because:

The world needs to be aware of how many people suffer in silence.  They need help and understanding.

30. The fact that you read this list makes me feel:

Thankful.  Because maybe now you’re a little more aware, and can be more understanding of others you meet with invisible illnesses.

[Via http://ruminarispoonie.wordpress.com]

Nattokinase and Lumbrokinase Dissolve Biofilms Causing Fibromyalgia, Autism, Chronic Fatigue

In the following article, Dr. Peta Cohen uses a combination of Enzymes (nattokinase and lumbrokinase);  EDTA;  antimicrobials (i.e. grapefruit seed extract, or GSE; echinacea, goldenseal, gentian, tea tree oil, oregano oil, neem);   binders (citrus pectin, aluminum free sodium bicarbonate); and buffering agents (i.e. Vitamin C) to successfully treat autism.  He believes this therapy can be used successfully to treat lyme disease, lupus and multiple sclerosis.

DISSOLVE BIOFILMS WITH FIBRINOLYTIC ENZYMES:

A NOVEL APPROACH TO CHRONIC INFECTION IN AUTISM SPECTRUM DISORDERS

2009 Allergy Research Group

An Interview with Peta Cohen, M.S., R.D., founder of Total Life Center in Northern New Jersey. Cohen specializes in treating children with autism using a biomedical / nutritional model. Cohen received her Masters in Clinical Nutrition from New York University and has been a Defeat Autism Now! practitioner for the past ten years.

Focus: You have evolved a highly successful strategy to treating chronic bacterial infections and biofilms that involves some new insights and relies in part on fibrinolytic enzymes like nattokinase and lumbrokinase. I understand you are working with autism experts like Anjum Usman, M.D. and functional medicine pioneers to get the word out on your new insights.

Cohen: Bacteria build biofilms by first aggregating together, and then rapidly weaving this protective web or matrix around them.  They build a polymeric matrix … They’re very protected. They’re very crafty in creating a way to survive and procreate and hide from the immune system.

Focus: Why are they protected, and how does that impact our health?

Cohen: They’re protected because they’ve built this matrix but are still alive, still fermenting and metabolizing and leaching toxins into the bloodstream …Because of the biofilm they can no longer be reached by an anti-infectious agent or even the immune system. And because of the biofilm you may not find evidence of the infection in the fecal matter when you do stool cultures. For years, I knew from organic acid testing, from the short-chain fatty acids and metabolites the children were excreting, that they carried these infections. Yet when I did a stool culture I did not find the bugs.

Focus: When you began to work at dissolving the biofilms, did you find the bugs?

Cohen: Oh yes! But I found something else that was just as fascinating, something nobody was thinking about … It’s standard knowledge that biofilm bacteria sequester calcium, magnesium and iron to help build that matrix. Minerals give the biofilm integrity—as if you’re building a wall … To address this, first you use fibrinolytics to help dissolve the fibrin, then you use EDTA to chelate out the minerals. And guess what? We started getting huge dumps of toxic metal. Now why is that? I think the answer points to something so huge, whether we’re dealing with autism or lyme disease or multiple sclerosis or lupus or even cancer.

Focus: Why were the kids dumping toxic metals when you began to degrade the biofilms?

Cohen: EDTA is able to chelate them well. Mercury, and copper, and other heavy metals are positively charged. Why would the bug preferentially insert calcium or magnesium? It could use any positively charged metal.  As we degraded this biofilm matrix and liberated these bugs, not only did the organic acid levels get higher … but the kids started to dump metals into the bowel. I felt like I’d exposed these little terrorists in a cell.

Focus: So the metals and the bugs are both in the gut?

Cohen: Right. At an Autism One Conference in Chicago last May, one researcher presented his proton analysis of brain tissue, attempting to verify the presence of mercury in the brains of autistic children, and he couldn’t find it. Yet he still found evidence of activation of the microglia (a type of glial cell that acts as the first and main form of active immune defense in the central nervous system) as a consequence of toxic metals. So where are these metals? I’m suggesting they are in the biofilm, along with the bugs, in the gut. If the biofilm wasn’t using toxic metals, along with common minerals, to build the biofilm, then why all of a sudden do I get these huge dumps of metals on stool tests?

Focus: What exactly is your therapy and what sequence do you use?

Cohen: I start with enzymes like nattokinase and lumbrokinase, as well as other mucolytic enzymes, to get the best, broad fibrinolytic effect. Dr. Usman feels nattokinase is particularly good at degrading strep biofilms and I think that strep is a very big player in these childrens’ health. I will run strep titers and they will be extraordinarily high. And these children—and certainly some adults as well—will manifest strep as a comorbid infection that has significant implications for neurological function. They will have very OCD type tendencies, and sometimes almost psychotic outbursts.

Focus: How much do you recommend?

Cohen: Remember, these patients are very young; some are just a few years old. So I will recommend half a capsule of each, two times a day. That would be a 50 milligram capsule of nattokinase, and a 20 milligram capsule of lumbrokinase. First do the enzymes along with EDTA, then thirty minutes later, add in an arsenal of antimicrobials. I use formulations containing berberine, artemisinin, citrus seed extract, black walnut hulls, artemisia herb, echinacea, goldenseal, gentian, tea tree oil, fumitory, gentian, galbanum oil, oregano oil, neem, and pharmaceuticals as well when necessary, such as Vancomycin, Diflucan, Gentamycin.  I use a different one every day. Then an hour later you come in with the binders to help mop up the debris. I use chitosan, citrus pectin, a special bicarbonate formula, organic germanium, chlorella and others. I also use buffering agents, such as buffered vitamin C, since when the body is destroying bacteria it becomes acidic. Minerals must be assessed, and repleted when necessary. I test bloodwork and “pees and poos” (urine and stool) every two months to monitor the process.

Focus: Enzymes, EDTA, antimicrobials, binders, and buffering agents. What are the clinical results?

Cohen: They’re fantastic. It’s like the missing piece. I had one little autistic boy who lives in the city who is loaded with viruses and infections and is now almost fully recovered. His mother used to complain about the terribly high levels of copper in his bloodstream and that his hair was like a copper mattress. We measured the hair but there was a marginal amount of copper in it. He was not eliminating. As we got into the thick of the biofilms his copper blew out of his body in his stool, for months and months. He’d been loaded with copper. I’ve had other children struggling for ages to get mercury out, and out it came.

Focus: It sounds like this approach would work for any chronic illness in which chronic infection plays a role.

Cohen: Yes, I think biofilms are a huge missing piece in Lupus, Lyme Disease, Multiple Sclerosis and any autoimmune-type chronic infection. You have to ask, what compels the immune system to maintain this state of dysfunction? Ask yourself, how could an organism perceived by the immune system as foreign survive its presence? Either something has corrupted the immune system, or the organism has transformed itself in a way that the immune system can’t find it. That’s what the biofilm does. I believe it’s one of the biggest medical issues we’re dealing with today.

—— Abstracts ——

J Dermatol Sci. 1997 Nov;16(1):2-10 Biofilm formation of Staphylococcus aureus strains isolated from impetigo and furuncle: role of fibrinogen and fibrin. Akiyama H, Ueda M, Kanzaki H, Tada J, Arata J.

Appl Environ Microbiol. 2008 Aug;74 Fibrinogen induces biofilm formation by Streptococcus suis and enhances its antibiotic resistance. Grignon L, Grenier D.

[Via http://stevensponaugle.wordpress.com]

Staying Healthy on the Road

With only six days to go until my trip, I have been contemplating strategies for remaining healthy while I’m traveling. Of course, “healthy” is a relative term when you live with fibromyalgia. Obviously, with concerns in the media about a resurgence of swine flu this fall, my goal is to remain virus-free. But I am also aiming to maintain my basic health, such as my energy level , so that I avoid a severe fibro flare.

For basic health, I am carrying a 3-oz bottle of hand sanitizer for those situations in which I find myself far from soap and water. Especially handy while flying across the Atlantic or zipping around Europe on trains. I have also packed travel-size Kleenex for a variety of sanitary uses (hand-washing, sneezing, even toilet paper in a pinch). I will also be vigilant about washing my hands before every meal and snack.

I plan to carry a stainless steel water bottle in my day pack to keep myself hydrated and avoid unnecessary waste of plastic bottles. (At two bottles a day, think of how many bottles I will be saving over the course of five weeks!) I will also carry small snacks such as nuts and dried fruit to keep my blood sugar steady between meals.

Diet is a very important concern when traveling and the key to staying healthy, especially with fibromyalgia. I have worked so hard this past year to change my daily diet so that I can manage my fibro and have more energy, and traveling could easily wipe out all my progress. My first major test will be when I set foot in Chicago O’Hare airport and realize I need lunch before my long-haul flight to Germany. When I’m on vacation, I often adopt a very typical mindset that, well, I’m on vacation! I then proceed to eat whatever I want, no matter how greasy or sugary. This is a surefire way to land myself in bed with a very bad flare of symptoms and depressed that I’m missing out on my European experience.

My food strategy? The same common-sense advice we read and hear about constantly – eat rich foods like sweets and red meat in moderation, and load up on whole grains, fruits, and vegetables. Avoid anything greasy and deep-fried. In order to maintain as much control over the ingredients and preparation as possible, I plan to picnic for two meals a day. At breakfast and lunch or dinner I will assemble a picnic of healthy food purchased from the local store or from the outdoor markets so common all over Europe. By preparing my own meals, I control what I eat, how it is prepared, and get to experience a slice of local life, browsing their markets and interacting with the people. I will also save money in the process – no 20% Value Added Tax (VAT) or gratuity! I will still indulge in the local restaurant scene, just only once a day.

Indulgences will still be allowed in small doses. I will be in regions of the world where some fantastic wine is produced, so a glass of red wine with dinner will be mandatory! While caffeine and coffee can aggravate some of my symptoms, Eastern Europe hosts some of the best coffeehouses in the world, so I will still allow myself to sip some marvelous cups of espresso. Again, moderation is key. And of course, I absolutely MUST sample the gelato in Venice. It would be a crime not to!

To maintain my health and keep my fibromyalgia manageable, I plan to maintain a regular sleep and eating schedule, with a very forgivable exception for the opera in Vienna and Budapest. (Seriously, as an employee of the local performing arts center, NOT to partake in the amazing theater and opera scene in Eastern Europe would be blasphemous!)

Armed with these strategies, I hope to make the most of Eastern Europe, even with the daily physical trials of fibromyalgia.

[Via http://chronictraveler.wordpress.com]

Now This Was A First....Even For Me...lol...

Turkey Vulture photo by Lila

Turkey Vulture photo by Lila      Well I told myself that I would not use photos on this blog, but this is such a weird and funny thing how could I pass it up? Look I know that I have been feeling really bad but come on now….. what’s up with the vulture showing up on my patio…. just a few feet away from my bed next to the glass patio doors? Then up on the roof too? Does it know something I don’t? THIS is a “Hell if I know day” if there ever was one. I have all kinds of critters but never a vulture……lol….no I’d be ROTFLMAO only I would need help getting up and I’m afraid if I stayed on the floor too long and didn’t more that crazy vulture might try to find a way in and try a bite or two of this bird…..it’s times like these that a little ground fog cover could come in handy…. ya know what I mean? I’m gonna have to sleep with one eye open till that vulture gets lost in the fog too!  Beware if you have FMS and wander in the fog also…. never know when one of these vultures might show up at your place too….. stranger things have happened……walk quietly and in peace until our paths may cross again…… Lila

[Via http://lilabyrdakabirdladybyday.wordpress.com]

30 Things About My Invisible Illness You May Not Know

Hang with me peope, it’s Invisible Illness Week starting September 14th and I am GEARING UP! Finally! Find out more about Invisible Illness Week at www.invisibleillness.com

But read this first, okay?

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: fibromyalgia

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2005

4. The biggest adjustment I’ve had to make is: my reality needed a complete makeover.

5. Most people assume: that I couldn’t hack working or am really, really lazy

6. The hardest part about mornings are: the first breath in as you wake up, you just know it’s going to be a bad day when you wake up and every single pain alarm in your body is going off. Days like that, throwing in the towel now, thanks!

7. My favorite medical TV show is: well, if you count Bones as a medical show. Just started watching it about five days ago. I only watch TV when I flare and it seems like TNT was having a Bones marathon…

8. A gadget I couldn’t live without is: oh, I probably could live without it but I really like it; my iPhone. It’s nice that it has a GPS system that can actually help me find my way out of a paper bag. I know that “total loss of direction” is NOT a listed fibromyalgia symptom but in my book it should be!

9. The hardest part about nights are: it’s a toss up between really trying hard to relax enough to go to sleep (who knew it’d be so hard to relax!) and waking up at 1am and knowing you are done sleeping for the night.

10. Each day I take 12 pills & vitamins.

11. Regarding alternative treatments I: have tried a whole lot of them…but am willing to try some more if they look promising. Whatever works!

12. If I had to choose between an invisible illness or visible I would choose: neither. Yes, my reality is taking it’s own sweet time adjusting…

13. Regarding working and career: an accountant with short-term memory loss working thirty cases in rotation…nope don’t see that happening. Blogging seems to be more my style at this moment. I can usually remember what I’m thinking in one sentence or paragraph. Any more than that…it can get interesting.

14. People would be surprised to know: I can smile. Few have seen it. I even show teeth occasionally.

15. The hardest thing to accept about my new reality has been: accepting my new reality! I notice that the longer this goes on, the fewer “good days” I have. That is chilling.

16. Something I never thought I could do with my illness that I did was: I found that I can travel with my husband. He travels lots! I pay for it, but it is so worth it because we have a lot of fun together.

17. The commercials about my illness: are incredibly stupid. How many people are actually helped by Lyrica? And how many are lugging around an extra 40 pounds because of it? The actresses are incredibly helped and incredibly thin. Oh please.

18. Something I really miss doing since I was diagnosed is: I miss not worrying about if I am going to be able to keep scheduled appointments. It really sucks when I have to be a flake and bail because I can’t get the brain in gear.

19. It was really hard to have to give up: working; at the end I really hated the job, but it was something that I’d worked hard for and it really hurt to give it up.

20. A new hobby I have taken up since my diagnosis is: blogging. kind of a silly answer because if you’re reading this, you already know.  When I find a new hobby I’ll tell you about it.

21. If I could have one day of feeling normal again I would: well…okay, how do I say this? How about…That would be between my husband and me and yes, it would take the entire day.

22. My illness has taught me: to know that the world isn’t going to end today just because my body is overwhelmed with pain and my brain refuses to work. Eventually I’ll get some kind of equilibrium…just give it some time.

23. Want to know a secret? One thing people say that gets under my skin is: Oh my sister said this and it made me want to stick a bunch of clothespins on her (with super glue) and say it right back to her “Can’t you just shake it off?” My sister, of all people! Sorry, haven’t found peace on that one.

24. But I love it when people: I love the way my MommaJan (my husband’s mom; she’s my favorite mom-in-law ever! Let me rephrase that…I love and admire her. We’ll leave it at that.) just finds a way to say something positive…and I’m pretty sure she’s never wanted to stick clothes pins on her sister.

25. My favorite motto, scripture, quote that gets me through tough times is: “When all you can do is all you can do, then all you can do is enough.” I heard that phrase while I was in college (working full-time, going to school full-time and lots of kids at home) and it has stuck with me. It really works for me now!

26. When someone is diagnosed I’d like to tell them: DON’T BUY SNAKE OIL! And just because a doctor prescribes it doesn’t mean it isn’t snake oil. Investigate everything…the Internet is a beautiful thing; a very useful research tool–use it! And get on the chronic pain and fibromyalgia forums…talk to people. You aren’t alone.

27. Something that has surprised me about living with an illness is: I have to walk with a hitch in my giddy-up when I use my blue handicapped placard even if I’m not feeling a hitch in my giddy-up because I’m tired of mean ol’ in-you-business people telling me off about I’m using that placard illegally.

Of course those “saints” don’t stick around for me to pull my “got a right to it” card or my explanation. Using a limp is a chicken’s way out. Yep, that’s me. Don’t have the energy to waste on that stuff. Get a life people!

28. The nicest thing someone did for me when I wasn’t feeling well was: the last five days I have felt like absolute pond scum…no, worse than pond scum. Algae? And my husband happily sat down and watched TV with me while I was pretty much confined to the couch. He loves to get out and about, but he’s lots like his Mom…he’s just so beautifully positive. Wish it would rub off!

29. I’m involved with Invisible Illness Week because: Wouldn’t it be a wonderful thing if I didn’t have to fake a limp when I use my handicap placard? Not all handicaps are visible…right up to the point I collapse and then it gets real visible.

30. The fact that you read this list makes me feel: Well, if you’re my sister, I’m scared. Anybody else, thank you so much, I appreciate your interest.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

[Via http://fibrochondriac.wordpress.com]

Understanding Chronic Fatigue Syndrome

This is from CFIDS Association of America…

Collected here are the top 10 most frequently provided answers to question number 22, “What is the one thing you’d like your family/friends to really understand about CFS?” Responses were limited to 100 characters, and some were stated using different words, but I’ve tried to capture the “essence” of the most consistent responses with a few direct quotes as well.

1. CFS is real.
   
   “I’m not making this up.”
   
   “My symptoms are very real even though you can’t see them.”
   
   “I am sick with a real disease and I’m doing the best I can.”
2. It is very debilitating and disabling.
   
   “CFS is as disabling as HIV, cancer and MS.”
   
   “Staying at home is not a ‘fun vacation from reality.’”
   
   “CFS is absolutely life-altering.”
3. The fatigue is very intense.
   
   “It’s more than being tired.”
   
   “My energy is very limited.”
   
   “I understand you’re tired, but it’s not the same as CFS.”
4. Looks can be deceiving.
   
   “I don’t look as bad as I feel inside.”
   
   “Even when I look good, I feel awful.”
   
   “Just because I look okay now, know that I’ll pay for it later.”
5. CFS is unpredictable.
   
   “I don’t know from one day to the next how I’ll feel.”
   
   “I have no control over how I feel.”
   
   “I need to be flexible in planning things.”
6. It has nothing to do with being lazy.
   
   “I wish I could accomplish more each day than I can.”
   
   “Even simple things are often beyond my ability.”
   
   “I’m not trying to get out of doing something when I say I can’t.”
7. Words don’t do CFS justice.
   
   “There’s no way to accurately describe how bad I feel.”
   
   “I still hurt as badly 20 years later as I did the first day I got sick.”
   
   “Even when I don’t talk about it, I still feel sick.”
8. CFS is very isolating.
   
   “I am often lonely and alone.”
   
   “Life moves on without me.”
   
   “Nobody understands what I’m going through.”
9. Your understanding is important.
   
   “I am so grateful for my family’s support.”
   
   “I am very lucky to have their understanding. It makes life bearable.”
   
   “I still need quality life experiences and to be involved.”
10. CFS is not a choice.
    
    “I don’t want to be this sick.”
    
    “I miss the person I used to be.”
    
    “It’s so sad to miss out on so many things in life.”

Consider sharing this list with the people in your life whose support is important to your well-being. Maybe it will start a dialogue that helps deepen their understanding of what it’s like to have CFS.

You can read the full article here.

[Via http://livingwithcfs.wordpress.com]

Paleolithic Diet: Day 28 - Backed up!!

Since yesterday or so.. I’ve been “backed up” in the fecal-machine. Yep. I’m constipated. Now, I’m not so constipated that I can’t eat… nor does my tummy hurt. But things aren’t “flowing” the way they should be.

I have very little in terms of theories to attempt to answer this riddle… all I know is I hope it rights itself.

I will keep you updated!

Today’s Menu:

Breakfast: 1 extra-small Local Cantaloupe

Snack: 1 Pear

Lunch: 2 LaraBars – Cherry Pie

- Dates

- Cherries

- Almonds

Snack: 4 Figs

Dinner: Blueberry and Avocado Salad

- 1/2 cup Romaine

- 1/2 cup Mixed Greens

- small pint of Wild Blueberries

- 1 Avocado

- fresh squeezed Lime

- Chives

- 1 Celery Stalk

Snack: N/A

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Nutritional Analysis:

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Physical and Emotional Changes:

1. Craved a lot of carbs today. Not sure why… wasn’t feeling “meaty”.

[Via http://sassifer.wordpress.com]