ME, CFS och FMS — fokus i media

Intressant! Nu kanske vi äntligen kommer att se lite mer fokus hos både vården och i samhället på vad det här faktiskt innebär för oss med detta syndrom, denna diagnos. Du vet väl att ME (Myalgisk Encefalomyelit), CFS (Cronic Fattigue Syndrom) och FMS (Fibromyalgia Syndrom) i grund och botten är samma enhet/syndrom? Orsaken är densamma men huvudsymptomen är är något olika hos olika personer. Vissa har huvudsakligen kronisk trötthet, andra värk.

Såg en repris på TV4's Efter Tio där Malou intervjuade både Pernilla Zethraeus och Carl-Gerhard Gottfries (som startade specialistkliniken för FMS - Gottfries Clinic i Mölndal).

Malou intervjuar Pernilla Zehreaus

Malou intervjuar Carl-Gerhard Gottfries

Svårigheten med denna sjukdom är att vården står maktlös. Många läkare erkänner inte ens att det finns utan hävdar att symtomen har psykosomatiskt ursprung. Det är som att sticka huvudet i sanden. Dessa människor är sjuka! Många blir totalt inkapaciterade men får ingen hjälp. Det finns hjälp! Men du måste nästan vara frisk för att nå fram till den...

Det som är synd är väl också att den forskning som bedrivs är ensidig, och känner jag, lite revirhävdande och prestigefylld. Inte minst är den styrd av de stora läkemedelsbolagens goda vilja att skjuta till pengar. Ingen utsikt av profit, inga pengar. Hade det inte varit så här tror jag man hade varit mer öppen för att lyssna och lära.

Hjälp till att påverka din läkare så han/hon blir upplyst! Be dem ta reda på mer om behandlingen Guaifenesin Protocol så kanske även vi i Sverige kan få ta del av den!

http://www.fibromyalgiatreatment.com

Ta hand om dig!

Why Sudoku?

You know how hard it is to go training when your whole body is screaming NO? Now, we know any kind of activity is good for our body but it's really hard when everything you do hurts. So how do we get around that? Just do it anyway! But do it little by little, softly. There is just no way around that...

Same thing goes for brain activity. It's like the the hard disk/drive (mind/brain) just wont go to work... Any person can feel foggy once in a while but when this fogginess clouds your way of coping, your thinking abilities, it's not fun anymore. Is there, then, a way to ease that? Apart from the benefits of Guaifenesin that is. Yes, but there is a catch — training! Sorry but that's the way it is. Again, take small steps at a time. One very good training for the brain is actually sudoku. But any puzzle, music instrument or something that allows your brain to be activated is fantastic. Give it a try! http://www.sudokukryss.se/

Another thing I love to do is to talk to people. But not just talking about the weather or usual, "ordinary" stuff. I engage in more profound discussions and I build pictures of what that person is saying. It is great and it is stimulating!

Again, small steps...

There is no shortcut

There is a jungle out there with information — also about fibromyalgia. However, many feels they don't get the right information or they simply resign to the (many times) poor information and support their regular doctor give them. So what to do?

There is no shortcut. You have to search for and read the information yourself and then decide what to do with that information. Perhaps I can offer some good (I think) links to look up? Look on the right hand sidebar under links or below in this blog. If you continue to read on this site I will add information piece by piece. Since I live in Sweden I also (for selected parts) add a Swedish translation.

How I retrieved my information and got to where I am today

We all (well, I should think most of us anyway) want to have good health and not to be bothered and burdened with a decease such as fibromyalgia. Though, as life is, we don't get to chose that, meaning our genetic setup. (Yes, fibromyalgia is inherited and more and more physicians recognize that.) So, we are here with all the circumstances that each of us have (which vary from person to person).

I am no different... I long acted on these circumstances, like if I got the flu I went to the doctor to get antibiotics; if I gained a kilo I didn't eat for a day or two... When you are young you don't worry so much about how you treat you body or that your body will be with you for a long time. You sort of get the quick fixes and then the problem is gone. And it works for a while. Until one day it doesn't anymore.

2004 was the year for me when it didn't work anymore. I just knew something was very wrong with me. I was constantly ill in some way. I hurt all the time. When I worked out at the gym (still was doing that as I had been since my teen-days) I all of a sudden couldn't do certain movements and I started to get this great pain afterwards, not the usual kind of muscle ache. It took until April 2006 before I got a lable on what was wrong with me — I was diagnosed with fibromyalgia — after a long period of disillusion and many test to role out other potential deceases.

Though, my new specialist doctor didn't inform me about any treatment — he said there simply was none. I got very sad. I wanted to get my old self back! I wanted to be healthy and fit! So I searched... and searched and searched up to a point that seemed hopeless. So I turned to a dear friend of mine, Rosalind Fritz, who is also my teacher and mentor in structural consulting. She directed me to a friend of hers who also had fibromyalgia. She, Gabriela Lerner, then wrote me an e-mail that turned my life around. This was in March 2007, 2,5 years ago. She began her e-mail like this: "Dear Eva, I'm a friend of Rosalind's and she has forwarded your message to me to ask if I would tell you about how I cope with my Fibromyalgia. So I'll start from the beginning, bear with me."

So, I did... I let it sunk in. This Guaifenesin treatment seemed oh so frightening to begin with. To think of all the things I had to give up... I really felt sorry for myself. So I looked at some other strings of information as well. All other so called treatments or, as we swedes sometimes call it — artificial breathing, were just pills pills and pills. Painkillers, Lyrica, opioids etc. I realized after a while of reading about those that this was just a band aid and that a pill would never get me my health back. So back to Guaifenesin treatment.

I started taking Guai August 2008 but since I was inexperienced I didn't order enough so I was out of Guai after three months... I restarted July 27 this year and it certainly has been a journey so far! I will write about my progress a bit later.

Now to some 1-2-3 steps and some useful links!

1. Get diagnosed. Make sure all other, potentially more dangerous, deceases are excluded.
2. Order and read the book "What your Doctor may NOT tell you about Fibromyalgia" (WYDMNTYAF).
3. Read all the info on the official web side www.fibromyalgiatreatment.com.
4. Do a body mapping, preferably before you start the treatment. You can get the instruction CD ordered, see link.
5. Very important — Get rid of all topic products that contain salicylates!
6. Determine if you have hypoglycemia (HG) or carbohydrate intolerance. If not, go to 8.
7. If you do have HG/carb-intolerance you HAVE TO keep a strict diet! Look up Hypoglycemia link.
8. Start with Guaifenesin. Do it exactly as Dr St Amand prescribe in the book WYDMNTYAF.

Links

The official web side for Fibromyalgia Treatment Center and studies:

www.fibromyalgiatreatment.com/board

City of Hope Paper, pdf

Dr St Amands review on the City of Hope Paper

Supportgroups:

GUAIGROUP

UK-FMS-GUAI

Other fibro-bloggers and communities:

Fibromyalgia Journal

WeAreFibro.org

To order Guaifenesin:

www.amazon.com

www.fibropharmacy.com

www.prohealth.com

www.cleure.com (only fast acting)

To order Salicylate free products (these sites display the ingredient list):

www.cleure.com

www.fibropharmacy.com

www.amazon.com

www.drugstore.com

Books, CDs, DVDs:

What Your Doctor May Not Tell You About Fibromyalgia

What Your Doctor May Not Tell You About Fibromyalgia Fatigue

What Your Doctor May NOT Tell You About Pediatric Fibromyalgia

First Year-Fibromyalgia-An Essential Guide For The Newly Diagnosed

The Guaifenesin Protocol DVD

DVD on Dr. St. Amand and Claudia Marek speaking to the Fibro-Free Support Group in Edmonton, Canada in Sept. 2009.

The Pain Behind The Mask

...or simply google the title or search on Amazon.

Hypoglucemia Diet

Dietary Restrictions The Hypoglycemic Must Follow:

HAVE NONE OF THESE:
Alcohol (for the first month)
Sugar in any form
Soft drinks
Fruit juices
Dried fruits
Bbeans
Lentils
Starch
Potatoes
Corn (limit popcorn to one cup)
Bananas
Barley
Rice
Pasta
Burritos/Tortillas/Tamales
Caffeine

Sugar/Sweetners; Dextrose, Maltose, Sucrose, Glucose, Honey, Corn Syrup, Rice Syrup, Cane Syrup, Fructose

No compromise is allowed with the diet for the carbohydrate intolerance syndrome. One must eat correctly or symptoms continue. The reward of well‑being is exhilarating when contrasted with the disabling symptoms of hypoglycemia. It is yours to control.

Hypoglucemia

A summary made from the webside of Fibromyalgia Treatment Center:

The word hypoglycemia simply means low blood sugar. It’s often used to suggest a disease but it is actually only one symptom of a syndrome with many complaints. This complex would be better defined by the term carbohydrate intolerance. It is expressed by the body’s inability to use certain carbohydrate loads effectively without adverse consequences.

Chronic symptoms are experienced even when the blood sugar is normal. They consist of fatigue, irritability, nervousness, depression, insomnia, flushing, impaired memory and concentration. Anxieties are common as are frontal or bitemporal headaches, dizziness and faintness. There is often blurring of vision, nasal congestion, ringing in the ears, numbness and tingling of the hands, feet or face and sometimes leg or foot cramps. Excessive gas, abdominal cramps, loose stools or diarrhea are frequent.

Acute symptoms are frightening and occur at highly variable glucose levels, but usually three or four hours after eating. The release of adrenaline, more than sufficient for correcting the fallen blood or brain sugar, induces these distressing twenty-to-thirty minute events. They include hand or internal shaking accompanied by sweating, especially with hunger. Heart irregularities or pounding and severe anxiety completes the picture. The more intense bouts are labeled panic attacks. Feeling faint is common and actual syncope may occur. Nocturnal attacks are often preceded by nightmares and cause severe sleep disturbance resulting in daytime somnolence.

Only a perfect diet will control hypoglycemia. It is not the food you add but what you remove that assures recovery. You must totally avoid sugar, corn syrup, honey, sucrose, glucose, dextrose or maltose. Heavy starches such as potatoes, rice and pasta are also forbidden. We allow one piece of fruit in a four hour period but no juice since they contain excess fructose. Certain carbohydrates such as sugar‑free bread are allowed but intake is limited to one slice three times per day. All carbohydrates are not created equal as can be seen by our list. You must follow the diet as written with no substitutions: for example puffed rice is allowed but not rice. Caffeine is not allowed since it prolongs the action of insulin. See Hypoglycemia Diet.

Fibromyalgia - brief facts

• A legitimate and common illness. Officially 3-4% of the population has Fibromyalgia. The hidden number is may be much bigger. This means that in Europe 33 216 000 (830,4 million x 4%) has FMS and in Sweden 372 thousand (9,3 million x 4%) has FMS.
• A cyclic and progressive illness with multiple symptoms. These symptoms shows up more seldom in the beginning, but as time goes by they come more often and in the end a constant state.
• The illness affects several of the bodies areas and systems.
• It is now generally accepted as an inherited disease.
• There are no diagnostic laboratory test.
• Diagnose is commonly made by putting pressure on 11 of the 18 so called tender points along with at least 3 months of chronic pain in all four parts of the body.
• Many people have symptoms that overlaps other diseases, like Hypoglycemia, which strikes about 30% of those with Fibromyalgia.
• There is currently no cure for Fibromyalgia.

But, there is a treatment and that is the Guaifenesin Protocol.