30 Top Tips for Treating CFS & Fibromyalgia When All Else Fails
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-fungals Diflucan and Anti-Yeast, and the thyroid supplements Armour or BMR Complex). 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 treatments that can be very helpful in stubborn CFS/FM cases, and I explain an overall approach to using them. I group the 30 treatments by categories, in the order in which they should be considered. Each part in the series will cover 10 of these special treatments.
You should begin with the basics by getting started on the core SHINE protocol. If you haven't already done so, do the free Symptom and Lab Analysis Program. This will create an individual SHINE treatment protocol customized to you, based on your symptoms, and if available, the pertinent lab tests.
The basic treatments, 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: Recheck the Basics
Part 1 includes the first 10 of 30 treatments to try "when all else fails" — and a lot of these focus on sleep.
For easier readability, I show an asterisk (*) next to the treatments that are self-care/non-prescription. The other treatments require that you work with your doctor. (Note that some of the asterisk treatments are actually a mix of self-care and medical care.) At the end of this section, you'll find a list of which treatments require a blood test (a convenient summary in case you want to do all these tests at one time).
Start by trying the following four treatments. If they fail to work, move on to the numbered steps below:
- Herbal mixes Revitalizing Sleep Formula and Sleep Tonight
- Medications Ambien, trazodone and/or Neurontin
- Low dose melatonin (.5-1 mg)
- And a drop of lavender oil on your upper lip at bedtime
*1. Be sure you are sleeping eight hours a night.
If not, read my article Sleep and Insomnia. If you've found that sleep medications aren't working for you, download the SHINE Protocol document and review treatment numbers 22 through 46a for a partial list of natural and prescription sleep aids that can help with fibromyalgia. Most people discover that there are many helpful sleep treatments that they've not tried yet.
*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 treatments) 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 the herbal mix Sleep Tonight. This product brings 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) — Sleep Tonight 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 treat 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 on my Facebook page and I'll give you the solution (and stay tuned for an article on this in an upcoming newsletter).
*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 treat you for restless legs syndrome (RLS). The best treatment 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 treatment (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!
*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 treatment. 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 treat for 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 treating 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. I order it by prescription from a compounding pharmacy (ITC Pharmacy, at 888-349-5453). 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.
About 50% of people who don't respond to any other treatment 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 treatment 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 treatments discussed in this three-part series. They are summarized below for your convenience:
- Ferritin (treatment no. 3)
- Anti-transglutaminase IgA and IgG antibody (treatment no. 7)
- Serum ammonia level (treatment no. 8)
- Fasting morning cortisol; DHEA-S (treatment no. 12)
- Pregnenolone (treatment no. 13)
- IGF-1 (treatment no. 14)
- Free and total testosterone (treatment no. 16)
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