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Adrienne Dellwo

Is There a Cure for Fibromyalgia & Chronic Fatigue Syndrome

By September 20, 2013

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It seems like everyone who's diagnosed with fibromyalgia or chronic fatigue syndrome goes through this: a period of frantic searching online, certain that there's a cure somewhere out there.

This quest is made frustrating and treacherous by myriad false claims of cures, all with patient testimonials and "scientific" claims just far enough above your head that they seem legit.

To answer the frequent question about a cure, I've written:

Did desperation lead you to try supposed cures that failed? Leave your comments below!

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Comments
September 20, 2013 at 9:03 am
(1) Rachael says:

At this time, there is no cure for ME/CFS, but that doesn’t mean there aren’t ways to dampen an up-regulated immune response (the cause of my case of ME/CFS). There are no cures for many illnesses, but that doesn’t go to say that they can’t be controlled. I am so thankful that the internet was there for me to do my own research. If I had left it up to the medical professionals that I consulted about my illness to find answers, I don’t think I would be here today. I was sooooo sick, but most doctors didn’t even believe ME/CFS was real; I had no time for that nonsense. Desperation led me to find my own way. Researching online and reading everything I could about ME/CFS and related conditions/illnesses helped me connect-the-dots in finding my own solutions.

September 20, 2013 at 11:03 am
(2) MissyD says:

I have tried numerous “cures”, but probably the most off the wall was “beaver juice” We live in Northern Ontario and one of the locals gets Beaver castors from a trapper. They are dried and then soaked in vodka for months. The resulting tincture is spectacularly nasty tasting, but some swear by its efficacy. Since I am willing to try almost anything to make me feel better, I gave it a shot. I was to take one ounce each morning for 10 days. Besides tasting foul, the medicine is 40% alcohol – the 10 days were lost, and of course I experienced no improvement. It just goes to show the lengths some of us will go to in order to feel better. And this stuff was vile… I mean VILE!

September 20, 2013 at 12:59 pm
(3) Vandamir says:

I’ve had Fibromyalgia since age 18, was diagnosed at 20 and am now 40. While I’m not “cured” my Fibro is controlled and in 20 years I’ve only had one major flare that knocked me down for a year and it was after a major mold event in my building. Lifestyle changes such as gentle exercise, dietary changes and a sleep routine plus Flexeril to promote quality sleep, magnesium & Melatonin keep my Fibro pain way.

September 20, 2013 at 4:27 pm
(4) Lanny says:

Rachael…Please share your solutions. I appreciate any and all info that has helped someone else as I am still suffering. Thanks!

September 20, 2013 at 6:23 pm
(5) Rachael says:

Lanny: I think you first have to figure out if your illness is caused by poor immunity (prone to illnesses like cancer, diabetes, depression, infections, viruses etc) or up-immunity (prone to autoimmune type illnesses, allergies, anxiety etc). Most people seem to be in the first category (poorer immunity). Things like exercise, raw vegetables and fruit, low fat anything that boosts immunity makes them feel better. I fall into the second category (up-regulation of the immune system). So, I do just about everything opposite of what they tell everyone else to do now-a-days. I try to keep my immune system calm. If you don’t fall into the 2nd category, what I do will probably be of no benefit. If you do let me know and I will try to explain what I take and why?

September 20, 2013 at 8:57 pm
(6) Gail says:

Hi Rachael – I too have up-immunity and take numerous supplements which I have researched on-line (which can be time consuming and leads to many false starts), so would love to hear the solutions that you have found work for you.Thanks.

September 20, 2013 at 9:49 pm
(7) Ann Compton says:

I enjoy this web site, my son and I both have Fibromyalgia and all the other related illnesses. We are having trouble now with Multiple Chemical Sensitivites, which I am thinking is the underlining cause of FOB! I still laugh at the doctor that said” If you can sleep like a 5 year old you won’t have Fibromyalgia !” All the meds he had me try did not help what so ever. I now take Ambien nightly but still don’t sleep soundly.

Think about it do you have problems with allergy symptoms to perfumes, cleaning products, petroleum products, and the list goes on? Look up MCS and see if you have the symptoms, you will be surprised…

September 20, 2013 at 10:35 pm
(8) Abot Bensussen says:

No, there is no cure at this time, nor is there a specific cause. My drs. tell me it is now considered a neurological disease, not rheumatic. The dr. who has helped me the most is a psychiatrist, a sleep specialist. He prescribes Xyrem for me, and a Vpap machine.

Good, deep sleep does influence the pain of fibro, it has stopped the shaking, all over aching body pains. Where you just want a opium blanket to wrap yourself in! A cpap or vpap machine helps with sleep apnea, that can disturb the deep levels 3 & 4 of sleep that people with fibro do NOT get on their own.

Years without decent, deep level sleep, will cause anyone to be ill. Daily migraines, and being bedridden was just the norm for me until 7 years ago when I found my sleep dr. Referred to me from my pain dr. I also had psychotherapy to help me deal with my chronic illnesses. (I have Sjogren’s syndrome, too). I still take Xyrem twice a night, and believe I will probably need to continue for a long, long time, if G-d grants it.

September 20, 2013 at 10:42 pm
(9) Bobbi says:

Started having problems with MCS and other strong odors when I was 8 and passed out when opening a fresh can of coffee for my grandmother. Ever since strong odors of any kind can make me ill or faint. It doesn’t matter if they are petro-chemical in nature of organic, any strong odor can cause it.

As far as a cure goes, I wish. I have tried every medication that has been approved by the FDA for Fibromyalgia and several that haven’t including one that I was asked to try by a medical student on a website that I used to moderate for fibro patients. It might have helped somewhat (I think the main ingredient was tumeric) but it made my IBS 100% worse. Some of the drugs have worked well, some have made me worse and others seem to have no effect on me at all. Currently I’m on a cocktail of an antidepressant, an anticonvulsant, a muscle relaxer, several vitamins (CO-Q10 seems to give me added energy) and 2000 IUs of Vitamin D. I manage to hold down a job although I do find most of my non-working hours are spent sleeping.

If someone finds a cure I’ll givve you my most prized possession, my Maine Coon cat (not really). Please someone, find a cure!! I get relieve from some of my symptoms, but no relief from the dread disease itself :(

September 20, 2013 at 11:30 pm
(10) Rachael says:

Gail: This is what I do. I am not a doctor and I am not recommending this to anyone. It has helped me, but we are all very unique and we all present with many varying symptoms. In fact, I don’t even think that we all have the same illness. When doctors didn’t help me, I found my own way. This is what I do.
*************************
First I replenish my depleted dopamine stores (re-fuel):

1) I break open a capsule and take a dab of tyrosine (amino acid precursor to dopamine) in the morning. Dopamine can act like a brake, without it the immune system becomes hyper-responsive making you feel like you have a terrible flu, or hangover. Through trial and error, I found that while I seem to require tyrosine in order to feel well (replenish dopamine), the amount I take is small.

2) Salmon oil capsules – one or two depending on how I’m feeling – fuel for the brain

3) MSM – also in very small doses (methyl sulfonyl methane) is a sulfur-containing compound. – sulfur is a building block

***************************
Afternoon:

4) Vitex or Chasteberry – dopamine agonist – suppresses prolactin – prolactin triggers pro-inflammatory immune responses – one or two capsules

5) Plain old-fashioned aspirin (ASA) – anti-inflammatory – one or two regular tablets

***************************
Bedtime:

6) Over the counter sleep aids, which are actually sedating antihistamines – helps me sleep and calms my hyper-reactive immune system.

***************************
I think of food as fuel for the body and the brain. I eat plenty of protein and I also eat saturated fat. For me a little sugar is not the enemy.

September 21, 2013 at 12:51 am
(11) Julie says:

I agree there is no cure, but there are definitely ways to improve the symptoms if you are willing to make the effort. I have found about 80% improvement by making major changes to my diet. It’s definitely not 100%, and I still have bad days, but it’s a heck of a lot better than it was.

September 21, 2013 at 4:47 am
(12) Sandy says:

Has anybody out there in the medical marijuana states found if it helps? I read where the canniboids (? spelling) helped more than the THC (which is probably one of many reasons synthetic THC doesn’t work)

Thanks, I’m in a state that does not have that advantage but since I will be moving in the next year and can live anywhere SS disability can afford, I figure why not move to a good doc and something that can help.

September 21, 2013 at 7:38 am
(13) Julie in Oregon says:

I live in a state that allows medical marijuana. I tried it. For me, it seemed that I became so much more aware of my symptoms – not something I want. Granted, I only tried smoking it. Nevertheless, it did me no good.

September 21, 2013 at 11:36 am
(14) Nitalynn says:

Every time I see a new site proporting to “cure” fibro as ask myself two questions. First, what are they selling (because they always are) and if it is such a great new find why are there hordes of people in fibro groups online talking about it. If it sounds like it may be legit I wait and listen. So far nothing has made a splash.

September 21, 2013 at 11:40 am
(15) Nitalynn says:

On the serious side I would like to add that one thing that has helped (not cured but helped significantly) me is magnesium.

September 21, 2013 at 5:45 pm
(16) Lois says:

I seem to be most like Rachel. I have tracked my fibro/cfs down to dopamine. However, when I took the tyrosine precursor it made my heart pound so I can’t take it.

I did get totally rid of fibromyalgia however. To get a deep sleep I tried L-Glycine and, along with my usual sleep med, I got a great sleep. took the L-Glycine for a total of three nights and woke up with no fibromyalgia!

It seems that I cannot metabolize protein, at least that’s what I get from my reading. The glycine somehow gets the protein to your muscles? It certainly did something for my muscles. I do have to take it again every few weeks to keep the fibro away.

It’s either a neurological or metabolic disorder. Nothing at all to do with rheumatology. Most of us are apparently lacking in a number of amino acids and those are related to the neuro transmitters. Different for everyone, I think. I’d like to get tested for amino acids.

September 21, 2013 at 8:27 pm
(17) Rachael says:

Lois: Just curious…when you tried tyrosine did you take a whole capsule? I found that a whole capsule was definitely too stimulating also, especially as the days accumulated (accumulative effect). That is why I now just take a dab on the tip of my finger; one capsule can last me almost a week. I came to the conclusion, that it most have something to do with brain structure, since it seems most people can take much larger doses of almost everything.

That small dab of tyrosine is all I need to feel dopamine replenished. Some of dopamine’s notable functions are in memory, cognition, sleep, inhibition of prolactin, mood, pain, learning, control of nausea etc. I’ve always taken much smaller doses of most medications, supplements etc than the average person. I often wonder if this difference contributed as to why I developed ME/CFS in the first place and why I eventually was “running on empty” (dopamine depleted).

Dopamine Functions
http://www.news-medical.net/health/Dopamine-Functions.aspx

September 22, 2013 at 3:08 am
(18) Gail says:

Thanks Rachael – it is always interesting to hear what has helped someone overcome ME/CFS. Because I am hyper sensitive to chemicals I take a magnesium tablet at bedtime rather than in the morning and this helps my sleep somewhat while being a natural alternative to medicines. I have also been wondering about trying MSM – does anyone else take it? As it was a prescribed medication which gave me ME/CFS originally, I am very wary of adverse reactions to meds.

September 22, 2013 at 9:04 am
(19) MissyD says:

@ Sandy, It seems to help me a lot. It doesn’t make me better, but it does make me feel better. Does take some getting used to – the intoxication and increased appetite can be an issue. I don’t know if you saw Dr Sanjay Gupta’s piece on medical marijuana, but it was quite good, (it is available on you–tube) btw, I’m not in a medical state, but, like a lot of prices, am slightly higher in Canada.

September 22, 2013 at 10:49 am
(20) Magen says:

Dr.stamand said that gauifenesin cause reversal,elimination of all symptoms

September 22, 2013 at 10:04 pm
(21) Melody Lutterman says:

I experience Fibromyalgia, asthma, and degenerative disk disease in neck and lower back. I take Oxycodone for pain, Citalopram for depression, Lorazepam for anxiety and sleep, Trazadone for sleep, Sumatriptan as needed for Migraines. I am currently pursuing a plan to get off of Oxycodone as it has reached the point where it is not as effective as it was and I do not want to increase the dose or take another narcotic. My doctor advised me to purchase Turmeric in a capsule and follow the directions on the bottle. Turmeric is known for being a natural anti-inflammatory. My doctor also had me increase my fish oils to a therapeutic dose of 4000mg. While I am certainly not pain free; I am noticing some positive difference. Part of the difference is in my recovery time when I overdo. I also take a lot of supplements. I am very pro capsules. I believe that the powder contained in the capsule is easier to digest than hard tablets. I am also walking 1 1/2 miles a day. While it is not and earth shattering amount; I feel that it helps. Both my husband and I are fair weather walkers. Therefore, we walk inside a local mall. Three complete laps equals 1 1/2 mile, which we can increase at anytime. I also schedule in quiet time for meditation and positive visioning. I agree that everyone is different and what works for one doesn’t work for all. I hope that someone finds something helpful in this comment. Wishing You All Best Days, Mel

September 27, 2013 at 3:56 pm
(22) Carla says:

I have had CFS for over two decades. I have done just about every modality, supplement , you name it -all to no avail. Acupuncture was probably the most effective but too expensive to do on a regular basis.
I take Trazadone and Klonazapam to sleep, plus alot of melatonin. I
have reduced my Trazadone dosage to .75 mgs. a nite and plan on slowly reducing the Klonazapam. I have been following a healthy diet for years, no alcohol, gluten, high glycemic anything. Still no progress. It was not until I started taking colloidal silver that I saw any changes. I have been on it for 8 mos. now-building very very gradually. I see changes subtle, but changes nonetheless. I find that I have more good days than bad ones. I also find that the hyperactivity has lessened . If I am tired during the day I can actually take a nap and sleep, rather than tossing around in bed . I highly recommend it. The person that told me about it was cured of Lyme’s. She took it for a year and a half. I think that it will probably take me longer than that, but that is ok.

September 27, 2013 at 4:27 pm
(23) Lucy says:

I’ve tired most of the medications that the docs suggested and to no avail, If anything, they made things worse in both the fibro and other ways.

I believe someday there will be cures or at least good management therapies for many of the incurable chronic diseases of today. I think the best hope may be in gene therapy. But at age 65, I don’t hold out hope that this will happen in my life time.

I have found that the best things I can do for myself are to get as much restful sleep as possible, even if it means using sleep aids, doing gentle yoga several times a week, managing my stressors better and trying to get out of the house and with other people more often so I don’t go crazy staring at the same 4 walls all the time.

Beyond that is just accepting it is what it is and not to let anger over what I thought I deserved at this age to consume me.

September 27, 2013 at 8:55 pm
(24) Connie says:

Hi, Rachael I may try some of what you posted. For me it makes sense. Thanks.

Also Carla, do you make or buy your colloidal silver? I wanted to buy some and it was always so expensive and confusing. I am broke. Also read good and bad about it in the past. About one man turning blue or something like that?

I want to try some new things because I am suffering so bad right now. I don’t want to leave any stone unturned so to speak. I will continue to try what I can as I have found some little things others have mentioned here that help.

But still suffering very much. Just want to be able to have some sort of life. My life seems so small.

Money is one thing that is preventing me from trying a lot. Even things I need medically etc…So tired of suffering. Feel so alone in my pain. My husband is more distant. Best of luck to everyone. I hate this illness.

September 27, 2013 at 10:47 pm
(25) sue smith says:

I have been dealing with CFS since 1986 and I was disabled at 30 years old. 27 years later, after a 15 year repreve, it came back but I am healthy again. I didn’t know menopause would deplete me of all vitamins in additions to all the other health issues I deal with and increase with getting older.

First of all, I eliminated all processed foods, used reliv in my thirties. Still it took a lot of effort and ten years to get on my feet.

I am using vitamins, or did religiously for a year along with supplements and checked my neurotransmitters which I believe is key, especially adrenal gland support.

Research and do everything you can to stay strong.

I really hate when people self-diagnose themselves and are totally self-sufficient when as a college educated professor, I get completely debilitated and disabled. I have only worked part-time since I was thirty. Fatigue is not being able to get out of bed for months and years and if this hasn’t happened to you, you will not understand or even touch the illnesses.

September 28, 2013 at 10:20 pm
(26) Connie says:

I was diagnosed with FMS at the age of 28 and I am almost 47 now. I was sick before that. I got sick after having my daughter at 21. I have really suffered. Tried so much. I can’t afford to be sick.

I have not been able to even work part time for years. Many years ago I wish I had applied for disability when I had enough credits but thought I would get better. I have not.

My husband does not make a lot but I was told to apply for the other benefits he would have to be making nothing. So I could not apply for that. This has been very hard on our family.

We live on hope and prayers. We have one old van, we must keep as we live in a rural area. We are lucky we have a modest home(still paying on) and my husband of 27 years has a job.

We live in a very poor state, WV. We lack a lot where I live. We have been through a lot.

I pray every day. Does anyone else sell on Ebay or do any kind of work like that at home? I have not tried that. I may need to post in other places for this. We are broke.

I will try stuff if I can afford it. Which is not much. I can’t afford the doctors any more I need. We lack a lot where I live, esp for this type of illness. It is very lonely. No support groups or anything here where I live.

So the web is the only thing I have left to look for things to help me. I need a poor person’s cure. My husband is not the most supportive either.

I wish I could find a part time job I can do at least even from home. Any ideas? I can’t stand for long times or anything.

September 29, 2013 at 11:27 pm
(27) Tony says:

I have had symptoms of chronic fatigue syndrome for about 20 years. I also have a skin disease on my scalp – a form of scarring alopecia for which I am presently being treated. My last biopsy showed evidence of a bacterial infection in the roots of my hairs. Within a week of using daily topical antibiotics, my chronic fatigue symptoms showed a marked improvement. I have varied my use and each time I stopped I have become worse. I have being adding 100% pure tea tree oil to my shampoo weekly for the last year and I am now quite well. I do not mean to raise anyone’s hopes – I have tried may thing over the years and most do not help; however, this seems to work for me. If you have a similar experience, please make sure that you do not share hair care products and have your barber disinfect his equipment before and AFTER your haircut.

September 30, 2013 at 11:18 am
(28) gINNY says:

My symptoms started after a tick bite, decades ago and I was diagnosed the week the diagnosis criteria was released. Overall, my symptoms were very manageable, with little impacton my qualtiy of life.

Seven years ago, Ihad hundreds of seed tick bites, and again did not develop the typical rash. I became very ill, with an enlarged spleen and lymph nodes everywhere. I was told that seed tick do not transmit Lyme (wrong! animal reserch shows they do). My symptoms progressed and I was facing disability as one of hte fibro drugs were helping. I saw an MD who herself has Lyme disease, and I finally got a proper diagnois. So far, I have had 18 months of treatment for an infection that I’ve had for at least 6 years, and possibly 20+. I’m feeling better and better, with few fibro symptoms at all :)

October 5, 2013 at 4:44 pm
(29) Martine Peters says:

Hi everybody,

I have been ill for a year. Lost my job, my house and my marriage. I am too ill to live alone and do all the house keeping. So I live at a sweet friends house.

From tomorrow on I am going to try a total raw food diet. A littlebit of sport helps me a lot. But last week I did too much (still nothing compared to a healthy person) and now I am knocked down in bed again with a lot of pain.

October 24, 2013 at 9:43 pm
(30) Reg says:

Have had Fibromyalgia for about a year triggered from PTS due to violent incident. Wake up all night long due to pains.
Went 70% raw food, juices and green smoothies, multiple vitamins including magnesium, vit c and vit b, adaptogen teas etc etc.
No noticeable improvement for pains, fatigue or sleeping .

Then 3 weeks ago recently my sister gave me a glass of water with powdered Creatine amino acid in it. Literally within 10 minutes most of my pains disappeared like a miracle. Simply mind blowing for me.

There may be someone else out there with this nasty Fibromyalgia who may wish to give this Creatine a try coz truly works like a miracle. I take large teaspoon in the morning and another at night in water before bedtime. Like night and day for me. You can sip this all day long in water bottle. Pls note it keeps my symptoms largely at bay. If I stop taking it everything returns to continuous pain. Doesn’t cure Fibromyalgia but manages it beautifully.

October 30, 2013 at 3:05 am
(31) Gary Legge says:

I have been using Laminine My Email lbtrains@mullum.com.au

November 15, 2013 at 11:51 am
(32) Michele DeVoe Lussky says:

I had fibromyalgia for 15 years but cured it this year with a LOW-OXALATE diet. It took four months of following this diet (that is normally prescribed for kidney stone patients) to totally cure myself. Please look it up. It was a miracle for me. I tried everything under the sun. I am on no meds and I feel amazing!

January 21, 2014 at 10:39 am
(33) Chris Keeney says:

My wife suffered with ME for 5 years . We discovered a training program called “The Lightning process “. We travelled to Wales from Ireland to attend the weekend course . I, being the biggest sceptic in the world, thought this was just another crazy cure, but I was willing to try it as my wife had heard so many good things about it. The results were just amazing. For the first time in 5 years I saw my wife run along the beach near to where we were staying. Her energy had returned…I had my wife back .

January 21, 2014 at 3:24 pm
(34) redconvoy says:

There is no cure and I am tired of the “snake oil sales men” that claim that there is. I am also tired of people that think they know it all that “fatigue is just fatigue.” BS. What I have been doing is taking 100mg of Ginseng once everyday and 120mg of Ginko every other day to two days. After months of taking the Ginseng, I’ve felt a bit better and have more energy to do stuff. Consult with your doctor though before taking the stuff. If you take anti-biotics for an infection, only take the Ginseng with it after two hours. I also drink down a packet of Emergen-C plus in the morning with a meal. Don’t ever drink it by itself because it could upset your stomach. You will find over time that you will have more energy, but it is not the cure. Find out why you have it. My doctor suspects thyroid problems. I still have to do the test for ten days XD I wish you luck.

February 11, 2014 at 12:46 am
(35) Denise says:

I had fibromyalgia and I got HUGE results from Questran its a medication used for Cholesterol. I took it for 2 weeks powder form in apple juice 20 minutes before I ate my meals and it absorbed not only Cholesterol but it also absorbed and helped to eliminate toxins from my body at a great rate and it improved my vision from the toxic over load and I suggest googling it out there and see what you think. Personally its been a 3 fold winner for me

March 20, 2014 at 7:56 pm
(36) G says:

I have had CFS for 20 yrs after a trip to Mozambique that required a bunch of vaccinations and pils. I was fine up until then.

Got sick on the airplane over, thought it was a cold. Went to exercise 10 days later in Moz. and wound up back in bed. So I knew something was wrong.

Years of seeing doctors an naturopaths didn’t get me anywhere. I heard a lot of having it blamed on my attitude or that there is something in my head and if I just thought positive thoughts it would solve everything.

I have been going to a place called Northampton Wellness in MA that specializes in auto immune disorders on my GF’s recommendation.

I was on levothyroxine for hypothyroidism which helped. NW put me on Testosterone cream and famcylovir. The T-cream has helped considerably, certainly helped my sex life and my energy is better.

I now seem to bounce back a lot sooner form and over-do but still 3-7 or more days to get my mojo back is still expensive in productivity lost, important in college.

March 20, 2014 at 7:58 pm
(37) G says:

Was on Valcyclovir before Famcyclovir because blood tests revealed HHV6 and EB viruses were active in me. Doc switched me to Fam.

I am still leery of extended exercise, went for a mile and a half walk yesterday and hit the sack for a few hours afterward. I am probably de-conditioned as I am in a Masters program at the local university and I spend a lot of time at the screen writing and the weather has been below normal temps most of the winter dampening my desire to be outside. enough is enough of that. Can’t wait for spring (but I will anyway).

Stress kicks things up, too. Can’t seem to dodge that in a Masters program & I have had 5 colds in a row since October from being in the university petrie dish which just ads to my stress.

I have to say that I am probably better off than a lot of folks that I see posting here, but not being able to run at more than about 80% is something I still can’t seem to accept.

So, check out Northampton Wellness online. They may be able to help. But as we know there is no actual cure, just things to help make life better.

April 14, 2014 at 12:39 am
(38) Julie Ruengert says:

I have tried many things. Medication Ultram, but that just eases the pain. I take vitamins and Shakes with all 23 amino acids in them and have found that it gives me consistency to my life. Along with Fibro I have SOM-superior oblique myokemia that occurred because of a very stressful situation in my life. So for that I take Neurontin and that has side effects. I think my head injury that put me in a coma for 2 weeks and a viral infection-Mono started the fibro and Chronic Fatigue. So it may lie in the synapses in the brain. What we eat makes a big difference. I avoid MSG and Glutamate because it excites the synapses of the brain. Been on the Internet researching and if I hear of something, I will post it. Thank-you!

April 14, 2014 at 10:54 am
(39) Mick says:

Many people we have talked to have alleviated their symptoms by eliminating all excitotoxins from their diet. Many of the instructions that tell you to eat fresh vegetables, are simply a way to do this. But knowing what these excitotoxins are help a person to eliminate them. They would include MSG, hydrolyzed vegetable protein, autoylyzed yeast, calcium/sodium caseinate, Aspartame as well as any other fake sugars particularly maltodextrin, and binders such as any of the gums and carrageenan. Also topical creams and hair conditioners, toothpastes and medicines with any of these ingredients. Even the pumice your dentist uses to clean your teeth has MSG in it. There are a lot of sites on the internet that will give you the information needed to avoid these flavor enhancers, fake sugars and binders. You can go to http://www.saynotomsg.com for more information. There is nothing for sell on this site.

April 14, 2014 at 11:16 am
(40) Mick says:

One of the commentators suggested they use a packet of Emergen-C every morning. I had never heard of this product, but the word “packet” rang some warning bells for me. Whenever a food manufacturer puts a product in powder form in a packet, excitotoxins are usually part of the formula. http://www.emergenc.com/products#specialty-formulas.joint-health This is one of the products ingredients. I checked quite a few and all of them have maltodextrin, which is becoming a commonly used fake sugar, in the same realm as Aspartame. They also have aspartic acid, which is considered an excitotoxin in quantity. It does neuro damage. Most supplements use flavor enhancers to make you like taking them and all flavor enhancers are basically excitotoxins which enhance the symptoms of fibromyalgia. Eliminate excitotoxins have a happier and healthier life.

April 17, 2014 at 9:27 pm
(41) Frank P says:

I would like to share the experience of my 13-year-old daughter who started to have fatigue problem last December. I still wonder if she really has CFS/Fibromyalgia.

Don’t know how it really got started, but it could be due to her lack of good sleep in Oct./Nov. and getting cold while waiting for school bus. It also could be that her fatigue syndrome (or hormone change) caused her sleepless and her muscle pain. Almost every time when she was in school, she was so tired that she couldn’t move her legs and she couldn’t even speak. I had to bring her back. She had body pain (pretty much with her arms and legs) and was not able to walk in Jan./Feb. I sent her to one of the greatest children’s hospitals in the nation. But the doctors found nothing wrong and said she should go to school (even though she couldn’t walk). One doctor told me that it is not unusual for a straight-A teenage girl in winter time and it might take months to recover.

Then, I had her try acupuncture treatment which didn’t seem to help much.

Finally, I found one phenomena : after she took shower (sometime her mom would need to help her) and she was so happy and could jump around. So I bought a heating pad for her bed. I bought her hot water bags to wrap around her arms and legs. It got rid of her pain initially, but soon the technique no longer worked that well.

She could barely go to the school. She stopped taking music instrument lesson and stopped taking dancing lesson.

April 17, 2014 at 9:29 pm
(42) Frank P says:

Out of desperation, my wife tried to use her facial spa machine (<a href=”http://www.nuskin.com/galvanic/science.html” title=”Nu Skin’s Galvanic Spa System”>) to scrape my daughter’s legs and arms. It is similar to <a href=”http://en.wikipedia.org/wiki/Gua_Sha” title=”Gua Sha technique”>, but the machine is supposed to work deeper into your skin. It was very painful and she was crying when being scraped. However, within 10-15 minutes, her body pain were pretty much gone. But, the winter was brutal in Midwest, she was still very vulnerable to cold weather and could easily got her limb “frozen” for being outdoor for just a couple of minutes. Then, my wife needed to scrape her body again.

In March, we started to give her different kinds of supplements. During Spring Break, we took a trip to South America. She was wheel-chaired to the airplane. But, in summer-like weather, she could walk freely and didn’t feel the pain. As soon as she flew back, her body mode seemed to switch back.

But, having taken so many supplements, along with less severe weather, she seems to have more energy now. It doesn’t seem she would collapse like what she did early this year. She goes to the school 3 half-days in a week. Her brain still works a lot slower than before. Although she was in accelerated math class, she cannot do any math homework now.

April 17, 2014 at 9:56 pm
(43) david says:

thank you for the story!

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