From Our Readers: Comments & Suggestions – 3/18/2015


For Now, Treat Each Person's Symptoms

Re: The Myth of a Perfect Drug for Fibromyalgia or ME/CFS: the NNT Dilemma

Great article! I agree that without something to test for and measure, it's almost impossible to develop treatment protocols. Each patient must be treated individually, measuring their responses, and currently the only real way to measure success (NOT a cure), is by noting if there is an improvement in quality of life, function, ADL's, and patient perception of improvement.

There are so many meds, therapies, treatments, etc. that Fibro patients use…….and our responses to them can be vastly different.

It has taken me several years to find what works for me…….and maybe more importantly, what doesn't work! I think it is very very important for us to keep good documentation regarding what types of things have been tried, and our responses to each.

One area this is of utmost importance in is Disability. Whether it's SSDI or employer disability, one of the major things looked at is what you have tried to do to help yourself? What has worked? What hasn't? When I had my SSDI hearing before a judge, it was back before Fibro was getting approvals……and I was only 39 years old! I believe a huge part of my approval was based on the many things listed I had submitted, such as meds, therapies, even supplements and alternative therapies, that I had tried before being forced to file for disability. It was clear to the judge that I truly had TRIED, and tried hard, to seek help for this illness.

Hopefully someday there will be tests to prove the presence of Fibro, and to measure the success or failure of treatments. Until then it's just going to have to keep being measured by each patients response to meds and treatments ordered by their doctors. I just hope they (we) all know that you have to keep trying! If what you are on hasnt helped, keep going back and insisting on something different! Never give up trying to find what works for you, and makes your life easier and less painful! – Roni

Just Happy to Know I'm Not Crazy

Re: Cymbalta Warning: Discontinuing May Result in Severe Withdrawal Symptoms

I'm really glad I found this board and all of the information out there about weaning myself off Cymbalta and transitioning to a new anti-depressant. I've been taking Cymbalta since about 2008 for depression after I had a back surgery and my other medicine was no longer effective. I originally started at 30mg, but over the years it stopped working and last year my dr moved me to 120mg. Over all these years NO ONE has ever explained the severity of withdrawal symptoms that I could experience. All I knew was that if I missed even 1 dose I would live in a fog, 2 days left me physically ill, and 3 days had me crying hysterically. Now that I HAVE to get off of it because it absolutely no longer worked for me, I have felt like I'm living with the flu – all the same symptoms, but in combination with brain fog, hysterical crying or maniacal laughter, and weird feelings in my brain. I'm trying to combat it all with lots of water, green tea, multi vitamins, and eating right. I also shared the info with my husband, kids, and friends – so if something happens to me they know what to tell the doctors. Thank you to everyone for sharing your experiences because I know that I'm not alone in this. – petie 1999


Hey guys, I'm so happy I found this message board.

I was prescribed cymbalta for my anxiety and avoidant personality.

It was magic, I felt amazing, best I've felt in years. It really worked wonders for me.
I was away camping blissfully having a good time. It got to Sunday afternoon and I realised
Hey now I haven't taken my tablet in two days. Must remember to take it when I get home.

Enter "whoa what's that" turns out my first brain zaps were happening.
I googled it, I panicked, I want off this crazy medication.

I took my last tablet on Thursday last week after almost a year and a bit on it, 30mg then up to 60mg for a couple of months and then down to 30mg again for around a month. Yeah it was a fun year. Laziest year of my life. But anyway.

The withdrawals are strong, it sucks, I have the inner shivers and kinda like vertigo.
Luckily I haven't had much nausea or vomiting. My guts are going crazy though.

So is my heart. The thing that scares me most is that out of all of the posts there is not one here that says, "hey don't worry guys. Symptoms last two months and then you're golden. All good"

Why? I don't think you'd forget to Inform other people suffering with the same afflictions you are that you're all better. Out of this whole process thank goodness I actually feel like I am keeping my mind. No real deep depression or eratic thoughts yet. Here's hoping I won't get too emotional.

I really feel for you all. Thank you for sharing and I wish us all the best of luck… Something tells me we are gonna need it. – Brainzap85

The Chicken or the Egg

Re: Body Composition and Fibromyalgia

People assume the homeless got to be homeless because of drug use, while most homeless are homeless for other reasons and are coping with their situation with drugs and alcohol. People assume those with fibro have been overweight since day one, but I'm here to say that my weight gain came mainly with medications and the lack of a proper diagnosis and treatment. Before I diagnosed myself and demanding confirmation (which I got), I still have yet to get proper support for this condition – the result, my ability to walk everyday, to stretch and move about correctly without doing more damage is limited, so the weight goes on. So which came first, in my case, Fibro was set in long before I started gaining weight and if I had proper care and support, I doubt I would weight as much as I do. – Mazer

The Debate Over Dental Amalgams

Re: A Link Between Dental Amalgams, Fibromyalgia, ME/CFS and Other Chronic Illness

This article attempts to tell me that the effects of dental amalgams is settled science; however, that is not the case according to the ADA.

In response to inquiries, the American Dental Association issued this statement on June 5, 2008:

“The American Dental Association (ADA) believes the recent settlement between the U.S. Food and Drug Administration (FDA) and the group Moms Against Mercury simply sets a definite deadline (July 28, 2009) for the FDA to complete what it began in 2002—a reclassification process for dental amalgam, a commonly-used cavity filling material. As far as the ADA is aware, the FDA has in no way changed its approach to, or position on, dental amalgam.

“Contrary to some assertions, the FDA’s current reclassification proposal does not call for restrictions on the use of amalgam in any particular population group. It merely restates FDA’s ongoing call for public comments on that issue, as well as the findings of the most current scientific studies on amalgam….Presently, FDA has different classifications for encapsulated amalgam and its component parts, dental mercury and amalgam alloy. The FDA’s proposed reclassification, which the ADA has supported since 2002, would place encapsulated amalgam and its components under one classification.” – LouisVA


Around 10-15% of people who have their amalgams removed do not experience any particular benefit in the short term.

A friend of mine, who is in is mid-60s, was recently diagnosed with Steele-Richardson syndrome, the variant form of Parkinson's disease. He has had all his amalgams removed several years ago, but was now faced with an invariably fatal neurological disorder, with an expected life-span of 7 years.
We ran a hair test for heavy metals – nothing showed up. That made me very suspicious that he was unable to excrete heavy metals and was therefore accumulating them instead. We next ran a DMSA/Glycine Challenge test that confirmed that he was storing vast quantities of mercury, with smaller amounts of other toxic metals.

12 months of medically supervised DMSA & detox therapies has eliminated his heavy metal stores, and completely changed his life for the better. He is now on a combination of brain-building nutrients and he feels like life is worth living again.

Not everyone should have their amalgams removed. I've seen colleagues who have had this done by some well-meaning biological dentist, only for the outcome to set back their health by months-years. On the other hand, many people do experience a positive benefit from the procedure.
Regardless of whether or not you choose to replace all your existing amalgams, the fact remains is that you still need to eliminate all the heavy metals in your body sooner or later.

I would encourage everybody in the ME/CFS community to have their hair (or toenails) tested AND to have a properly performed DMSA/glycine Challenge test, to ascertain exactly what sort of burden you are carrying. Only then can an individualised treatment plan be devised, that will make a big difference to your overall health and functional capacity. – bj203

Service Dogs and Allergies

Re: Two Fibromyalgia Patients Turned Away Because of Their Service Dogs

The ADA disallows allergies as a reason to deny access to a person with a service dog for a reason. Allergies to dogs that rise to the level of being a disability are very rare. Disabling allergies that are not contact allergies are almost non existent. The allergist who denied access to the woman with a service dog broke the law and can, and should, be fined for it. Depending on state law, criminal charges could also be filed.

As a disabled service dog handler and disability advocate, I see the "allergy card" played A LOT. People see it as a "get out of jail free" card, and it is not. If someone has a non contact allergy to dogs that is disabling, they are going to react to every dog owner they come in contact with bc dog hair and dander will be on the clothing.

As for the woman at the restaurant not knowing about non guide dog service dogs, the law is 25 years old. That excuse no longer holds any water. – Illfarfa


Fibromyalgia and Brain Surgery

Re: The Pain Brain: Hippocampal Atrophy Found in Fibromyalgia

Years ago I read about how a doctor's wife was cured of FM by an operation at the base of her neck. This article seems to point to a connection. I would get this surgery in a heartbeat!! – nanatoyou

Editor's comment: The surgery you read about was most likely done to repair a Chiari malformation. According to the Fibromyalgia Information Foundation, “The Chiari (kee-ar-ee) malformations are a congenital abnormalities of the posterior fossa (base of brain where the spinal column joins the skull). This usually causes a protrusion of the cerebellum through the bottom of the skull (foramen magnum) into the spinal canal. This results in a poor circulation of cerebrospinal fluid from brain to spinal cord.”

The symptoms of fibromyalgia and Chiari malformation are very similar. While it's true that fibromyalgia patients who have a Chiari malformation may benefit from surgery, the results have been mixed and not every FM patient experiences a cure.

Fibromyalgia, Mitochondrial Disorders and PQQ

Re: Is Fibromyalgia a Mitochondrial Disorder?

I have commented previously on this issue in ME/CFS but the relevance to FM is the same. Brad Chazotte showed very clearly that the mitochondrial membrane is depolarized in his CFS cohorts. Some of these people had FM (as you would expect).

Subsequently Julian Ambrus revealed a case of FM but which he reinterpreted as a case of Mitochondrial Myopathy

For more information see also my notes in the ProHealth forum.

Currently we strongly recommend a high dose of PQQ to reduce neuropathy in FM, ie 20 mg PQQ twice daily.

This dose actually works quite fast (within weeks), possibly by reducing nf=kb and the pro-inflammatory network. It also appears to increase CSF IL-10 which is also essential to reducing neuro-inflammation.

Some people have actually described it as like being on pain killers. It is that noticable!

Of course it is also wise to add the other mitochondrial support nutrients:
CoQ10, Acetyl-carnitine, methyl-folate, sublingual B12,Magnesium (min 600 mg daily), DHA/EPA and vitamin D3, glucosamine. – IanH

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