july fibromyalgia newsletter 2

8/14/2019 July Fibromyalgia Newsletter 2

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The Treatment SessionCraniosacral treatment sessions generally lastbetween 40 minutes and one hour, dependingupon your specific needs. It is usually per-formed in a quiet office or clinic and should bedone by a trained professional. You are fullyclothed during the session. You will be asked to

lie down on a treatment table. Your practitionerwill place her fingers over specific points onyour body to measure your cranial rhythmicimpulse. She will then begin to palpate yourbody. She will gently touch the bones in yourskull as well as your spine, neck, and head.During the treatment, you may experience avariety of different sensations. These include:extreme relaxation (you may even fall asleep);temperature changes throughout your body;increased energy; immediate pain relief.After the TreatmentIt really depends upon the individual, but peopleoften report feeling immediate and continuouspain relief. This pain relief can build up for aslong as two weeks after your session. Somepatients also feel uplifted and energized in theweeks following treatment.I have had one treatment. The relief in leg painwas amazing. It lasted for a couple weeks. Ihope to try it again. Take care...until nexttime...Jodie In the next Alternative CareArticle: Massage Therapy

Last month we discussed Acupuncture & Acupres-sure therapy as an alternative therapy for painmanagement. Please let me know if you had anyquestions regarding that article.Craniosacral therapy, an offshoot of osteopathy, itis a relatively new treatment technique that manyfibromyalgia sufferers have benefited from. Using

gentle palpations, Craniosacral therapy helps re-duce symptoms of pain, headache, and fatigue.What is Craniosacral Therapy?Craniosacral therapy is non-invasive and usesgentle palpations on your skin in order to restorehealth, reduce pain, and increase resistance todisease. Craniosacral therapy was created in the1970s by Dr. John Upledger, based on theoriesdeveloped in the 1930s by William G. Sutherland.It is now widely used in North America.Theory of Craniosacral TherapyCraniosacral therapy is based on the idea that theCraniosacral system is directly related to youroverall health. The Craniosacral system includesyour brain and spinal cord, as well as the cerebro-spinal fluid that surrounds them. Craniosacraltherapists believe that the cerebrospinal fluid emitsa measurable pulse as it rises and falls (called thecranial rhythmic impulse), much like your heartand blood vessels do.) A healthy pulse shouldmeasure between 10 and 14 cycles per minute.However, if this pulse is somehow interfered with,it will cause a number of nasty health problems,including chronic pain disorders like fibromyalgia.

Craniosacral PalpationIn order to treat disease and improve the overallfunction of your central nervous system, Cranio-sacral therapists locate and measure your cranialrhythmic impulse. This can be measured by plac-ing the fingertips over specific areas of the body.Once your therapist has located the blockage in

your rhythmic impulse, he can begin to restore it.This is done through a series of extremely gentlepalpations. Your therapist will palpate specificareas of your skull, focusing on the connectionsbetween your skulls bones. By palpating thesebones, he will be able to restore a healthy cranialrhythmic impulse, thus reducing symptoms.Benefits in Fibromyalgia SufferersThere has been no extensive research on Cranio-sacral therapy in treating fibromyalgia. Manystudies suggest that Craniosacral therapy is help-ful for the first few sessions, but after that, itoffers no significant improvement in fibromyalgiasufferers. However, Craniosacral therapy ishighly regarded by many fibromyalgia sufferers.A large percentage have tried Craniosacral ther-apy at least once, and have found it to be ex-tremely effective at reducing their symptoms offibromyalgia syndrome. Craniosacral therapy issaid to:reduce widespread pain; reduce the number ofchronic headaches; increase range of motion;decrease chronic fatigue; improve mood

I am sick and tired of being sick and tired!!! Whatthe heck is wrong with me? I would bet money thatwe all have said this. With all the symptoms goingon you are probably thinking OMG, I have Lupus,or Rheumatoid Arthritis, no, wait, its a muscle ornerve disease. Wait, maybe I am just anemic or Ihave a hormone imbalance. Regardless, it is timeto see the Doc.

You go to your appointment and start to explain allyour symptoms to your doctor and as you do, hestarts writing out the orders for you to go have yourlab work done. Tube after tube of blood is drawn.Then you have an x-ray or two. You are a nervouswreck because you know there is something terriblywrong. The pain, the fatigue, all the other crazysymptoms. Its time for you to get your results.Well doc, give it to me straight...whats up? Docproceeds to tell you that there is nothing wrong andall the tests have come back normal. What?!?How is that possible? Unfortunately, this is how ithas to go. There are no specific blood tests toprove that a person has FM. (yet) Having all theseblood tests is still necessary though. It is a processof elimination the doc has to perform. Besides, it ispossible to have FM along with any of the afore-mentioned diseases. When all the blood workcomes out fine and you are still suffering from the

symptoms, the doc will more often than notconsider FM.

Hopefully he will consider the FM before heconsiders you to be crazy. When he tells youthat there is nothing wrong with youphysically, what is it he is trying to say? Thatmentally you have something wrong? Makesure you are talking to a doc that is sympa-thetic and not make you feel less than youshould. Your pain and suffering needs to bevalidated.

I also did some reading about a new blood testin regard to antipolyme antibodies. (http://arthritis-research.com/content/9/5/R86)

Another form of testing is hair analysis. (http://www.fibromyalgia-symptoms.org/tests/hair_analysis.html) We will discuss more testsnext month.

I personally feel that FM is a neurologicalcondition. More and more studies show thisas well. I am now going to a neurologist and Ihad my first visit last week. She confirmed myFM on the first visit. (see the email attachment

My Neurologist's Diagnosis) Next I am set for abunch of blood work, Some new blood tests thatI have already had and some that I haventwhich includes a B12 level test. I am alsoscheduled for a nerve conductivity test on myarms and legs. I will keep you all informed. It isalmost like starting over and I am not sure if it isgood or bad.both I guess.

Anyway, FM diagnosis isnt easy and it is frus-trating as HECK. We tend to keep on searchingfor a more established diagnosis. Ya know, thewhole theres gotta be something else rou-tine...it cantjustbe FM. Wait, hold on theresweetie!.dont say JUST! Just because thereare still some Dr.s out there that are narrowminded about FM, doesn't mean that they candown play FM. FM is a big deal and it causesmany people to be disabled. Oh, wait, I have toget back on track.this is a whole other articledirection here..

You have been diagnosed with FibromyalgiaSo have I. Know what? It sucks! Know whatelse? You and I together will deal with it. Wewont let ignorance get us down. Education isthe Key to Our Health. Dont forget I am herefor you...FibroHugs-Jodie

A l t e r n a t i v e T h e r a p i e s f o rP a i n m a n a g e m e n t

T h i s m o n t h : C h r a n i o s a c h r a l( F r o m F i b r o m y a l g i a S y m p t o m s )

U n d e r s t a n d i n g f i b r o m y a l g i a : D i a g n o s i s

F ibro F riends F oreverJuly, 2008Volume 1, Issue 5

Butterflies are symbols of metamorphosis. Fibromyalgia gives us the opportunity to

change, grow and become stronger.


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4. Skip Medications-With Stephen around,this will never happen.

We all react differently to different meds.

The docs prescribe meds in a specific way

that is supposed to benefit us best.

5. Get Inadequate Sleep-Sleep? Who needs

sleep?In the May newsletter I had an article

Deep Sleep as a Pain Reliever. Get

Some Sleep!!!

6. Gain Weight-No problem, I can do

that

Even some of the meds we take will causeus to gain weight. Managing weight isnt

easy, but even watching those 10-15

pounds I put on with the Prednisone the 2-

3 weeks I had to take it last month makes a

difference.

7. Don't Protect Your Joints-I need to

protect my whole bodyLOL!!!

8. Pile on More Stress- Yeah and tell eve-

ryone that you will help out with whateverit is that they need. Bake those 2 dozen

cookies for the class party, as PTA Presi-

dent meet with the school board this week,

take over for the 2 co-workers out on vaca-tion, coach the soccer team this week,

babysit for you sister this weekend, etc,

etc, etc.

Stress and the immune system play handin hand. Stress=weakening immune sys-

tem=pain and fatigue=stress about not

feeling well=added stress=well, you knowthe cycle

9. Pessimism Provokes Pain-This one I

have to be serious about. There is no needto feel hopeless. Back to what I am al-

ways saying You are NOT alone. There

is hope and life even with a chronic paincondition.

10. Focus on Unproven Remedies-

There is NO known cure to FM. If you

have other chronic pain disorders, thenyou have no doubt discussed them & the

remedies with your doc. The facts remain.

Dont buy into those horrible people outthere that are taking advantage of others

pain. Doing so will just take more out of

you than you have to give, both financiallyand physically.

Ok, now that you know how to bring on

more pain, GO FOR IT!!!.....Just kidding.

Seriously though, when you look at it from

this perspective, doesnt it make you want

to laugh a little? We fibromites can be so

freakn stubborn sometimes. Just ask

StephenFibroHugs...Jodie

and friends were all confused. My hus-

band at that time came to resent me for

loosing this job. This job had great

financial rewards. I loved this job. I loved

working. I am not one to NOT work

Some people go on and on about their

problems. We each have our own style of

coping with this crappy condition. But

what is it that I ALWAYS say? Remem-

ber that you are NOT alone! We are inthis together. I am not the only one in my

home that suffers from health issues.

Stephen has his own issues, plus he takes

care of me. This is a chore in itself. It is

easy to forget about being compassionate

for the other members of the household

when we feel so exhausted and sick our-

selves. Dont forget about them. They

need it more than we do most times.

I was going through this illness for some-

time before I knew it. Suffering and not

understanding what was happening.

Among other known and unknown

issues, I have fibromyalgia and chronic

fatigue. I am always doing more than I am

suppose to and I am not the type of person

to continually complain about it. I do like to

advocate it. But, not complaining has been

part of the problem. I ignored my body for

so long, pushing it to do my own plus usu-

ally 2 or 3 other people's responsibilities day

in and day out. I didn't bother talking abouthow bad I felt most of the time until I found

myself in the ER after passing out at work.

Once I knew I wasnt going to return to

work immediately, my boss and I talked and

he was concerned about my recent job per-

formance due to some cognitive problems I

was having. He wasnt sure how to ap-

proach me about it. Hmmm, constant pain,

fatigue, cognitive problems..anyway,

needless to say I had to step down from that

job. Doing so affected my life tremendously.

My relationships, my marriage, my family

1 0 W a y s t o I n c r e a s e P a i n

P a g e 2V o l u m e 1 , I s s u e 5

Yes, you read that right...10 Waysto INCREASE Pain...We are always looking at ways to decrease

our pain. I thought it was funny when Icame across an article that discussed the

top 10 ways to increase our pain. Yeah,

that is what we want to do, right?LOL!!!So my FibroFriends here is another way to

look at how to take care of ourselves.

Looking at it in reverse. Some of us need

to think backwards...LOL!!!

1. Over-do Activities-The more I can ac-

complish the better off I am. (Yeah right)

2. Do Not Rest or Relax

A Fibromites activity should be balanced

with rest and relaxation. Without periodsof rest and relaxation, our bodies rebel and

send pain signals. The level of intensity wetry to maintain by not resting or relaxing is

where we get that vicious cycle of fatigue -pain - more fatigue - more pain.

3. Do Not Exercise-I hate exercise..but

even I do some light stretching and swim-ming.

FM, Chronic Pain & RelationshipsThere was cause and effect, but I wasnt

realizing it.I lost a marriage, a house, acareer, and other relationships to this

illness without understanding what was

happening to me. I now have a different

life, a new life, amazingly enough, a

strong happy life. I am still suffering, but

with understanding and knowledge. I

believe that education is key to our health

and I am living proof.This illness is very difficult. I believe it

makes us stronger. Anyone who can sur-

vive what this illness does as far as taking

away is my hero. Next issue I will dis-

cuss some tips that will help in our rela-

tionships. Until then,Love one another

unconditionally. Live with each other

with understanding. Laugh with your

loved ones uncontrollably. Thank you

Stephen for giving me the opportunity

to do all of these...


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wasnt yet approved for FM...LOL!!!And she almost had me convinced tochange to another med.I said Iwould like to wait since I had just

started it I wanted to give it achance...plus my insurance just gaveme the ok to have me get it throughthe pharmacy instead of just samplesfrom the doc. She was just concernedbecause it wasnt yet approved as anFM drug. Hmmm..I will attach theannouncement for that as well.

Do you have CFS? There is some newinformation on the CDC.gov websiteregarding new treatment guidelines. Ihave never read the info on the CDCwebsite regarding CFS or FM. I foundit quite interesting to see how thegovernment looks at these. Check itout.

I think we have previously discussednatural sleep remedies. Maybe inemails and not in the newsletters, butI thought I would mention that re-cently, my kids, who have unfortu-nately inherited my inability to fallasleep at night, have tried two OTCnatural sleep remedies. Sleep MDand Rapid Sleep. For some reason,the Sleep MD doesnt work for thembut the Rapid Sleep does. Why am I

mentioning this? Just as a reminderthat what may work for one personmay not work for another. Pleaseremember this when I discuss medica-

tions and other therapies. Thanks.

Not New in the News

You are NeverAlone!!!!!

suppose to decrease.

Everyone is different. There aredays that the thought of moving oreven actually moving is just toomuch and for some doing exercisecould put them down for a week ortwo. Each person should discuss

exercising with their doctor.

For most, the benefits of exercis-ing include:

Increased muscle strengthDecrease in painPrevention of further bodily

injuriesBetter quality of sleepIncreased energyLess stressImproved sense of well being

There are many different types ofexercise. As I mentioned before, Istretch and swim. There is alsoYoga, Strength Training, LowImpact Aerobics, Walking, Station-ary Biking, etc. Whatever it is youtry, keep it simple. It is hardenough to stay motivated to exer-

cise, much less to have a chronicpain condition and have to exer-cise. Another tip to keep moti-vated is to set small goals andwhat I have found helpful is totrack my progress. Weighing,measuring, and timing myself.Using these to track my progresshelps me keep motivated. I didntsay I stayedmotivated for longperiods of time, I just said that ithelped me to keep motivated.Two more important things I can

think of to keep on track would beto exercise with a friend and lastbut not least, DO NOT be too hardon yourself. Start off with teenytiny little exercises. Seriously!!!!

Anyway, this is my take on exer-cise. This section of the newslet-

ter is still up for grabs. LISA?!?Let me know when you are ready.

Oklift your arms and stretch for5, 4, 3, 2, 1 and we are done

FibroHugsJodie

Just the thought of exercisingmakes my body hurt. I meanreally, if I do too much of anyphysical activity, I wake up thenext morning feeling like Ihave been hit like a MackTruck. Just so you know, asmuch as I hate exercising, I

have implemented a sort ofstretching out to my daily rou-tine as well as swimming a fewtimes per week.

The more reading and re-search I do about FM andother pain conditions the moreI read that exercise in someform is important. It strength-ens our muscles and preventsfurther injuries. Eventually,the pain from the exercising is

W h a t s N e w I n t h e N e w s ?A n d o t h e r a n n o u n c e m e n t s

P a g e 3V o l u m e 1 , I s s u e 5

This past week I went to the Neurolo-gist for my FM. I have felt for sometime that FM is a Neurological issueand finally my doc gave me the refer-

ral I have been asking for. It amazesme what I know in comparison to myregular doc. Anyway, guess what testshe is requesting??? She wants totest my B12 levels..I couldnt havebeen more thrilled!!! In April I hadread an article regarding B12 and Iwas so excited about it that I con-tacted the editor of the online maga-zine to get permission to print it foryou. Ms. Glaseen was very agreeableto allowing me to reproduce the articlefor you. Well my Fibro Friends, so youcould get the full effect of this greatarticle I decided to include it as anattachment in the email along with thenewsletter. So click on the extra at-tachment so you can read the article:The Vitamin B12ME/ CFS/ FM Con-nection: A Key to Improved Health forMany? This article is reproduced withpermission from the April 2, 2008issue of ProHealths FM HealthWatche-newsletter. Thank you Janet!

Next in the news: Did you get myemail regarding Cymbalta? Well, was Inot surprised?!? Just yesterday mynew neurologist told me Cymbalta

Exercising with aChronic Pain Condition

Body Care

Corner

All material in this newsletter is providedfor information only and may not be con-strued as medical advice or instruction.No action or inaction should be takenbased solely on the contents of thisnewsletter. Instead readers should con-sult their physician or other qualifiedhealth professionals on any matter relat-ing to their health and well-being. Read-ers who fail to consult with appropriatehealth authorities assume the risk of anyinjuries. The publisher is not responsiblefor errors or omissions.


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Last month a question was asked regarding Ribose. Susan is one of your fellow Fibro Friends. I would like to thank Susan C. (NewJersey) for writing back and contributing to this months newsletter. With her permission, I give you the following:

Im sending you a big hugggggggg. Hopefully you hired movers or moved from a minimalist apartment to a house?

I read the newsletter, and you are right on the money. I tried D-Ribose (beet sugar) and I ended up diabetic too, soon after that. I think, lookingat FM from a trained background in the physical body, that it is a metabolic disorder to fats and proteins as well as carbs that happens from thebreakdown of ATP (adenosine triphosphate) for the use of energy in cells. I think this is part of the weight gain that goes with it tooloweredactivity due to pain, combined with exhaustion, combined with trash in every cell filling it up. Something goes wrong with the P, and it piles up incells, causing cellular toxicity (thus the random pains anywhere anytime). It would seem that the mitochondria of the cell is not working right togive the power chemically from the ATP, and then the endoplasmic reticulum of the cell is not taking the trash out. Think about it like abounced checkthe bank redeposit's it over and over againmaybe 50 times in a day. Each cell goes through this energy phase many manytimes, and the phosphates fall off and pile up like trash inside the cells. I STRONGLY urge you, if you have a lot of pain, to try guaifenesin. Ihave a friend in pharmacology who told me it is the only thing known to all of medicine that helps the body excrete the phosphates buildup. Itworks to get rid of the pain, by ridding the body of the phosphates, but you are supposed to be able to metabolize them for some use in yourbody, thus this is why you are still stiff, and tired, even if you combat the pain. It is a disease of a metabolic type of origin. Another reason I

think it is metabolicscientists have for many years known that putting a person from a cold climate into a warm climate and not changing exer-cise or diet factors, the person will lose 10-20 pounds of body fat. All the baseball training camps are in Spring in Florida for the same reason. Itgets them in shape a lot faster. Me, being a diabetic and a FM suffererput me in the warm climate and I have no sugar issues at all, and Ihave no fibro issues at all. It is like being 19 again, if you can believe that. Im pretty active, and on a two week vacation, I have taken off asmuch as 12 pounds just being there. It would seem to be, that given this factor of heat added to the equation, and heat speeds up reaction time,that some chemical reaction is not functioning at proper speed. Either there is a lowered amount of some hormone/acid/proteinsomething onthat basis, or it has something to do with the hypothalamus and your body temperature. My body temp is a constant 97.4. I also notice that allmy pain goes away if I eat something salty, perhaps because heat is raised? Although, I do try to limit salt intake for diabetic reasons.

I also have not met a single person who wasnt a very active person before this occurred. I know a gymnast with it, I know a pro ice skater withit, I know a marathon runner with it, and I am an avid distance swimmer with it. We are all women. I think it might have to do with how we havemoved women into physical activity and sports today. In our grandmothers day, exercise for women was rather passive, and maybe we thoughtit was because of Victorian fickleness, but maybe it has a factual basis. FM has been on the books as a disease since the 1880s. I stronglybelieve that my fathers mother (died in a mental asylum) had a bad case of fibromyalgia. My dad told me a story about how there were twosofas in the living room, and he and his dad slept there. His mother slept upstairs. It was so they had enough time to hear her banter and runaway from her as she wielded shoes and things in agony. I suspect she didnt sleep well, and she probably felt and perhaps thought somebodydid something to her in her sleep when she woke up in that FM pain. I suppose if I was living in the 1930-1950 time era, I might think the samething. Silverware was kept in a metal tackle box with a padlock on it until dinner time. Apparently, she didnt suffer too much at dinner timeoooh, isnt that just like FM??? It is an AM disaster plan, I think. I also wonder when you see these women in the Olympics fail for drugs afterthe fact(and the men for that fact too), is it because of Oxycontin for pain???

Third thought on FM...in regards to nutrition in the USA . In our grandparents time here, a handful of peanuts had a daily supply of magnesiumin it (from the soil it is grown in). Today, it would take 1.5 tons of peanuts to get the same levels of magnesium from the nuts. Our soil in the USis VERY depleted. Overfarmed. No field burning to develop magnesium (ash) due to EPA clean air acts. We are and have been competingworldwide with countries that have three and four growing seasons to our two, and we have to push more use of the soil to get the commoditycontracts. The two foods containing the most magnesiumpeanuts and chocolate. Chocolate has been overfarmed around the globe also, andperhaps suffers the same issue. I have found that supplementing my diet with magnesium has helped get rid of joint pain associated withFM. Specifically joint pains. Perhaps women suffer from malnutrition more than men? Maybe too, if we didnt need to look like Barbie Dolls andcould look any way we wanted to look, we might get proper nutrition. The issue is nutrition in a sane amount of calories, given the soil condi-tions. I think this is a BIG issue. I also think the lack of magnesium in the peanut crop of today has given rise to the peanut allergy epidemic,because magnesium reduces allergic reactions. Can anyone answer why we could eat peanut butter sandwiches as kids and not have anypeanut allergy issues, and now there are kids with a deadly allergy just to the smell of it? Id be the first person to tell you that magnesium inyour diet reduces allergiesI ALSO have einosinophiliaan extreme form of allergies.. I only started supplementing with magnesium as of01/01/08 (part of my N Yr res and a good memorable benchmark to see if it was working because it was a date I could easily remember evenin FM fog). I have noticed dramatically reduced allergies. Even foods I couldnt have, I can have with no reaction (oh, and there are a TON ofthose!!)..

Fourth thoughtbest medical advice that I have seen results from, comes from Bottom Line Health magazine subscription. I read lots ofthings, but that advice is so dead on, and the proof is in the blood work.

I hope you enjoy your new home.

Susan, I LOVE my new home!!!!! Thank you so much for your letter.

1003 N. Maritza Pl.

Porterville, CA 93257

Phone: 559-756-0894

E-mail: [email protected] URL: myspace.com/ fibrofriendsforever

Fibro Friends Forever has been created for

Fibromyalgia and Pain Management Aware-

ness. Its mission is to help those with FM &

chronic pain disorders to change, grow and

become stronger. Our goal is to make every-

one aware of the issues that face those with

fibromyalgia (chronic pain) on a daily basis.

Education is the key to our health. Along with

informational services, we provide email sup-

port group services. Soon to include a

monthly, interactive support group meeting.

P A I N M A N A G E M E N T

S U P P O R T

F r o m y o u

change, grow and become strong

july fibromyalgia newsletter 2

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