30 Top Tips for Addressing CFS and Fibromyalgia When All Else Fails, Part 1

Published: July 10, 2012
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[ Part 1 | Part 2 | Part 3 ]

Part 1 of a 3-Part Series

When giving lectures, I'm sometimes approached by people who say they've tried everything for their CFS or fibromyalgia — but nothing helps. In most cases, I ask them if they've even tried the basic treatments in the SHINE protocol (such as the sleep medication Ambien, the adrenal hormone Cortef, the anti-fungal Diflucan or an herbal supplement that helps maintain healthy gut flora, and the thyroid medication Armour or an herbal supplement that supports normal thyroid function). Their answer is usually no.

Occasionally though, the person is still ill even having done SHINE. Though our published research shows that over 85% of CFS and fibromyalgia patients feel significantly better after just 3 months on SHINE, that's not good enough — Our goal is 100% relief!

In this series I discuss 30 remedies that can be very helpful in stubborn CFS/FM cases, and I explain an overall approach to using them. I group the 30 remedies by categories, in the order in which they should be considered. Each part in the series will cover 10 of these special remedies.

You should begin with the basics by getting started on the core SHINE protocol. If you haven't already done so, do the free Energy Analysis Program. This will help you identify issues that may be causing your fatigue.

The basic remedies, along with SHINE, will help most of you get your life back. But if you're having trouble getting better, or you're better but not better enough — read on to learn what to do next!

Part 1 includes the first 10 of 30 remedies to try "when all else fails" — and a lot of these focus on sleep.

For easier readability, I show an asterisk (*) next to the remedies that are self-care/non-prescription. The other remedies require that you work with your doctor. (Note that some of the asterisked remedies are actually a mix of self-care and medical care.) At the end of this section, you'll find a list of which remedies require a blood test (a convenient summary in case you want to do all these tests at one time).

Sleep

Start by trying the following four remedies. If they fail to work, move on to the numbered steps below:

*1. Be sure you are sleeping eight hours a night.

If not, read my article Sleep and Insomnia.

*2. Do sleep medications initially work for a few days or weeks, and then stop working?

If so, rotate them. For example, if each medication works for only two weeks, then take it (or a mix of a few remedies) for 10 days and then go on to the next medication. When you are on the last medication that works, go back to the first one(s). You'll usually find that it is effective again! Another advantage of using herbal sleep aids is that it's uncommon to develop a tolerance to them.

*3. Are you exhausted all day but wide awake at bedtime?

It's likely that your adrenal glands are under-functioning during the day — leaving you tired — but that your levels of the adrenal hormone cortisol are too high at bedtime — causing you to be wide awake. This is called a "blunted circadian rhythm." If this sounds like you, try an herbal sleep-support supplement that also addresses adrenal health. These bring down an elevated bedtime cortisol level, and often helps you sleep within the first few nights of use (and sometimes the very first night). You can take it along with other sleep herbals and medications. If after a few weeks of this herb working you start waking in the middle of the night, lower the dose or take a 1-2 ounce high-protein bedtime snack (see number 4 below) — The sleep-support supplement will have been lowering your cortisol too much.

*4. Do you wake up too early in the morning (between 2 and 4 am)?

This is very common in CFS and fibromyalgia, and has many possible causes. One that is common and simple to address is low blood sugar levels during the middle of the night. (It's not uncommon to see cortisol levels that are too high at bedtime become too low in the middle of the night, with a corresponding drop in blood sugar. See "*3" above.) The simple solution is to eat a 1-2-ounce high-protein snack at bedtime (cheese, an egg, some nuts). This will help maintain stable blood sugar during sleep. If nighttime low blood sugar is your problem, the snack will help the very first night. Also, acid reflux may wake you at night. Take an acid blocker at bedtime 1-2 nights and see if this helps. If it does, don't stay on the acid blocker (which is addictive). Instead, send me a message throug my Q&A page and I'll give you the solution.

*5. Undergo a sleep study to rule out sleep apnea, restless legs syndrome, or UARS (Upper Airway Resistance Syndrome) — or videotape yourself!

Here's a quick, do-it-yourself screening. Videotape yourself sleeping at night, putting the camera at the foot of the bed so you can see both your legs and your face. If your legs are jumping a lot during sleep, ask your doctor to alter your treatment to address restless legs syndrome (RLS). The best remedy for RLS is to take an iron supplement until your ferritin blood level is more than 60. The medication Neurontin can also help. If the video shows that you snore and stop breathing during the night, ask your physician to do a "split sleep study" to look for sleep apnea. In a split study, your physician looks for apnea the first part of the night. If it's present, they try CPAP remedy (Continuous Positive Airway Pressure, using a breathing mask) during the second part of the night. If you don't ask for a split study, the sleep lab will usually conduct the tests over two nights, which will cost you double!

Novel Therapies

*6. The Methylation Protocol.

This protocol, developed by Drs. Amy Yasko and Rich Van Konynenburg, and researched by Dr. Neil Nathan, addresses methylation defects. (Methylation is a biochemical reaction necessary for the building and repair of every cell.) The protocol can be very helpful in a subset of CFS patients who don't improve with standard remedies. For more information on the protocol, see Dr. Nathan's article at the ProHealth website. I have great respect for Dr. Van Konynenburg and Dr. Nathan — they are definitely on the side of angels!

7. Check for celiac disease, with two blood tests: anti-transglutaminase IgA and IgG antibody.

If your test is positive, you'll probably improve dramatically by avoiding gluten, a protein found in wheat. (Important: you must not be on a wheat-free diet before the test.) To learn more about celiac disease, see "How Often Are Spastic Colon (and CFS) Really Celiac Disease (Wheat Allergy)?"

8. Check for serum ammonia level.

If it's elevated, ask your doctor to address bacterial bowel infections. Elevated ammonia from bowel infections may also aggravate brain fog. (We talk more about these bowel infections in Part 3 of this series). Also, consider a trial of lactulose, a prescription laxative that binds ammonia.

9. Try low-dose naltrexone.

This safe, simple, and low-cost medication (an old standard in addressing alcohol and drug addiction) can boost immune function and decrease pain in fibromyalgia. More is not better, as it loses effectiveness if you take more than 4.5 mg a day. Generally, I give 3.5 to 4.5 mg at bedtime. Your physician can call it in, and the pharmacy can guide your physician in how to prescribe the medicine. An important point is that you need to give it at least two months to work. For more information (and you should read this before starting), visit the website Low-Dose Naltrexone.

10. Heparin.

About 50% of people who don't respond to any other remedies improve dramatically with 7,000 to 8,000 units of heparin, a blood thinner. I give a subcutaneous injection, twice a day. The benefits are usually seen within 3 to 6 weeks. Unfortunately, this option has some risks, such as bleeding, and even a potentially fatal drop in platelet counts. However, I've never seen or heard of either of these toxicities occurring when heparin is used for CFS. (You can find more information on heparin in my book From Fatigued to Fantastic!) I often save this for when all others fail, because of the risk.

Summary of Blood Tests

There are a number of blood tests used in the remedies discussed in this three-part series. They are summarized below for your convenience:

  • Ferritin (no. 3)
  • Anti-transglutaminase IgA and IgG antibody (no. 7)
  • Serum ammonia level (no. 8)
  • Fasting morning cortisol; DHEA-S (no. 12)
  • Pregnenolone (no. 13)
  • IGF-1 (no. 14)
  • Free and total testosterone (no. 16)

[ Part 1 | Part 2 | Part 3 ]
 

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