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From Our Readers: Comments & Suggestions – 4/09/2014

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CoQ10 Dosage


Good article…but what daily dosage is recommended??granna4

Editor: According to Dr. Pellegrino, typical dosing is 100-300 mg. However, Dr. Lapp once told me that many of his FM and ME/CFS patients take from 600-1200 mg of CoQ10. I personally take 600 mg of Ubiquinol per day, which is a really high dose since Ubiquinol is supposed to be up to 8 times more absorbable than regular CoQ10. It works very well for me, though. In my experience, it takes takes awhile to notice the effects of taking CoQ10 – anywhere from two weeks to a month.


Antivirals for Fibromyalgia?

Re: Big Antiviral Trial Could Usher in New Treatment Era for Fibromyalgia

I have seen many studies suggesting that FM patients have a dampened and dysfunctional immune system making us more susceptible to viruses, and there is certainly a breakdown in the gut of FM patients as evidenced by one of the major comorbid conditions IBS. The question is, “Does the virus occur as a primary problem or because our immune system is inadequate to handle it? My opinion is that CFS/ME is caused by an indwelling viral pathology, perpetuated by a dampened immune system. There is no doubt that both FM and CFS/ME have cross over symptoms, but symptoms can mean many things. For instance, low blood pressure can be from an acute bleeding, diuretics, hypovolemic (low blood volume) or neurogenic shock, NMH and/or POTS, or it can be a normal variant. The other thing to consider is the diagnostic criteria used for screening participants. We know FM and CFS/ME can, and do, co-occur in the same patient, but not always. Study participants should be closely screened and those with this dual diagnosis should not be participants in an effort to get results that are not skewed.

Many studies have been done regarding the immune dysfunction in FM, to name just a few more recent ones, Ahmad J, et al. 2014 Jan 18, Behm FG, et al. 2012 Dec 17, Blanco I, et al., 2010 Dec, Cordero MD, et al. 2011 Oct, Giacomelli C, et al. 2013 Oct, Pernambuco AP, et al. 2013 Sep, Fava A, et al. 2013 Jul, Feng J, et al. 2013 Jun, Hackshaw KV, et al. 2013 Aug Oaklander AL, et al. 2013 Jun, Yigit S, et al. 2013. Though studies may not be bill boarded as immunological (in the title of the study), there are many to suggest that FM is immune mediated.SiSiRN

Truly, thanks to Cort and ProHealth, I’m always up-to-date with recent findings and doings regarding FM research.

This truly sounds promising. I’m already on the Canadian approved FM prescriptions (Cymbalta and Lyrica), but they only help marginally. I’m taking 660mg of Naproxen every 12 hours and 250mg of Nucynta every 12 when I can afford it. The Naproxen is going to eat my stomach lining eventually. The Nucynta has been the *only* thing that takes my pain down to a “comfortable” level. Otherwise I’m stiff as a board and suffering daily. – idylarke

Thanks so much for sharing what you find Cort! Truly. idylarke


Withdrawing from Cymbalta

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

I can attest to SEVERE withdrawl symptoms with Cymbalta. Without going into detail, please know that one should absolutely consult their physician before discontinuing and be prepared to have family or friends able and willing to help keep an eye on you during the discontinuation.tbrhslp

You can indeed open the Cymbalta capsules and count out the beads, but you cannot dissolve Cymbalta in anything.

The gelatin capsule doesn’t do anything. The coating on each bead protects it from being dissolved in your stomach. This destroys the drug. Cymbalta is absorbed further down in your intestines.

Many, many patients have found this is the way to taper off Cymbalta. Some people are so sensitive to dosage reductions, they can reduce only a bead at a time, by week or even by month.

You can search the Web and find many, many reports of severe Cymbalta withdrawal syndrome, and many people tapering by the bead-counting method because it’s the only way to go off gradually enough.Altostrata

So I go to the Lily website because I could swear they tout that it isn’t a narcotic. If you go to the products page you can click on every product. Except Cymbalta. Try it and tell me whether or not I’m crazy. If it is blocked out, then why?Zachary1018

Editor: You’re right. I couldn’t click on Cymbalta either. You can still click on the Prescribing Information and the Patient Information but not on the product name. I”m not sure what that’s about. I can tell you, however, that Cymbalta is not a narcotic; it’s an antidepressant. Most of us tend to think of withdrawal as only happening when someone stops taking narcotics (opioids). But there are a number of other drugs that result in withdrawal symptoms if you stop taking them abruptly. That’s true of most antidepressants. Judging from what many patients and some doctors have said, though, SNRI antidepressants in general and Cymbalta in particular seem to have more severe withdrawal symptoms than some other types of antidepressants. So it’s important to taper off of those medications as gradually as possible.


Fine-Tune Exercise for Fibromyalgia

Re: Studies Show Physical Activity Improves Quality of Life for People with Fibromyalgia

Fibromyalgia is not a single disease. It is a cluster of symptoms.
Diagnosis is still unclear and will include people with different pathologies.

Exercise is valuable but the exercise MUST be tuned for people with FM, not part of a general fitness training or be in a gym along with non-FMs.

Swimming is useful but must be done carefully. Ideally water wading in thermal pools is best to start with followed by slow swimming in thermal pools. This should be combined with muscle stretching, particularly for the spine.

Many people diagnosed with FM have ME/CFS and must be extra careful. Many problems arise when people gain a diagnosis of FM without consideration of ME/CFS – and this happens a lot.

The key to exercising is to start VERY slowly, progress will be slow but improvement does happen.

If you find that exercise is hurting or worsening symptoms – you are doing too much, step back. Improvements can take many months or even years.

Exercise is not a cure but does reduce pain and fatigue if done properly. I would never advise someone with FM, and certainly not ME, to start exercising without first starting on a mitochondrial support program and in the case of people with FM who also have spinal stenosis an “anti-inflammatory” regime.

You should also get tested for herpes virus activation. Even a treatment of aciclovir can reduce symptoms a lot in many people with FM. (and ME). – IanH


Reducing Oxalates May Reduce Pain

Re: Fibro-Friendly Snack Recipes

Useful article but it is worth pointing out that many berry fruits are high in Oxalates.

I have reduced my FM pain by about 90% by following a low-oxalate diet. Google it and get a food list showing which foods are High, Medium or Low in oxalate content and just avoid the high ones. I was using Soya Milk as a substitute for dairy, not realising that it is VERY high in oxalate.

Can’t say if it will work for anyone with FM but it worked for me.andrewclark55

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Are you vitamin d deficient?

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