Fibromyalgia--Orthostatic Intolerance (NMH & POTS) Made Easy.
The answer is that it does. Because of this, our autonomic nervous system has to direct the blood vessels in our legs to contract and send the blood back up to our brain and muscles where it is needed. Otherwise, the effect can be similar to rapidly losing several units of blood.
When this system is not working properly, people's blood pressure can drop significantly when they are upright for an extended period. This can result in low blood pressure (Neurally Mediated Hypotension-NMH) or a compensatory rise in heart rate called Postural Orthostatic Tachycardia Syndrome (POTS). Whatever name you choose to call it, it falls under the umbrella of orthostatic intolerance. When people stay upright, they can get dizzy, exhausted, and brain fogged.
Orthostatic intolerance is a major part of what causes disability in chronic fatigue syndrome (CFS) and fibromyalgia.
Just a quick refresher. Fibromyalgia, which reflects as widespread pain, fatigue, significant insomnia, and cognitive dysfunction, essentially represents an energy crisis in the body. The body is unable to make enough energy to meet the demands. When this happens, the area that uses the most energy for its size, called the hypothalamus, malfunctions. Basically, it is like tripping a circuit breaker when one has an energy crisis. Just as there are hundreds of ways to blow a fuse, there are numerous triggers for the energy crisis that precipitates fibromyalgia.
So, what does the circuit breaker that goes off-line control? The hypothalamus controls the following:
1. Sleep, which is why insomnia despite exhaustion is a hallmark of this condition;
2. Hormonal function;
3. Temperature regulation; and
4. Autonomic function.
We have addressed these other components in earlier articles. To summarize, our research showed that by treating with the SHINE Protocol, 91% of people with fibromyalgia improved with an average 90% increase in quality of life (p<.0001 vs placebo). SHINE stands for the following:
* Hormonal support and hypotension (Dysautonomia),
* Nutritional support, and
* Exercise as able.
To make this easier for practitioners, we have created a free "Tools" file, which has a questionnaire and treatment checklist that you can use to dramatically simplify care of this illness. There is also a free Energy Analysis Program at www. EndFatigue.com, which can analyze your patient's symptoms and lab tests to determine the underlying causes of their fibromyalgia.
I had this illness in 1975, and it left me homeless. So, my goal is simple. Helping you make effective treatment for people with this illness available-to everyone.
Basically, autonomic dysfunction is a routine part of fibromyalgia and contributes markedly to its symptoms. People are upright for a few minutes, the blood rushes to their legs, their tissues don't get adequate blood flow, and they feel wiped out and brain fogged.
Simple so far. It gets simpler.
How to Diagnose It
The standard approach to diagnosis is to use a Tilt Table Test. It is unreliable, will make the person miserable, and insurance tends to not cover it, leaving them with a $2000 bill.
An easier approach? A wonderful study in the Mayo Clinic journal showed that a simple quiz can be quite reliable (See Sidebar). It is free and takes about two minutes. If you would like a copy in a Word file for office use, email me at FatigueDoc@gmail.com. Scores of nine or higher suggest orthostatic intolerance. In fibromyalgia, I consider a score of seven or higher to be suggestive.
In addition, the instructions for how to do NASA 10-minute lean test in your office can be found at https://batemanhornecenter.org/assess-orthostatic-intolerance/.
So, whether you simply want to diagnose it by history, checking blood pressures, or both, the diagnosis can be fairly simple.
Basically, these simple treatments can markedly improve function:
1. Increase salt and water intake. People with fibromyalgia will tell you that they are already "drinking like a fish." But tell them that they are also "peeing like a race horse!" This occurs because one of the hormone deficiencies is antidiuretic hormone or vasopressin, which leaves them dehydrated. In addition, salt is the sponge that holds water in our body. They should eat large amounts of salt, sometimes even licking sea salt from the palms of the hands. You will sometimes find that in an attempt to be healthy, many are salt restricting. That misguided advice is a good recipe for them to crash and burn.
2. It is remarkable how much improvement people will see by simply using medium pressure (20-30 mm) compression stockings. They should use ones that go at least to mid-thigh, but if they can't wear those, then knee-high ones will still be fairly helpful. They should wear them during the day when they are active (not when they are lying down for extended periods). Although low cost, these first two treatments are very helpful. Wearing something that constricts the abdomen, such as a corset or a girdle, may also be helpful.
3. Improve adrenal function. This is a critical part of our holding onto salt and water. As discussed in earlier articles, some will benefit from low dose hydrocortisone (do not go over 20 mg daily). In addition, natural adrenal support with Adrenaplex (EuroMedica) or Adrenal Stress End (Integrative Therapeutics) is very helpful.
4. Salt and water retaining hormones. Florinef 0.1 mg each morning can be helpful but is most helpful in those under 20 years of age or those with more severe orthostatic intolerance. DDAVP, 0.1 mg one or two tablets once or twice daily (basically vasopressin or antidiuretic hormone), can also be quite helpful. These replace the hormones that are low because of the hypothalamic dysfunction. It takes six weeks to see their effect. Rapid shifts in fluid levels can trigger headaches and migraines in some people. In these, it is best to slowly raise the dose, increasing by a quarter tablet every one-to-two weeks.
For those with problematic nocturia, frequent urination during sleep, giving a dose of the DDAVP at bedtime can help with this as well. This is the same medication that they give children who bed wet. It is reasonable to occasionally check electrolytes to be sure these are stable during treatment.
5. Increasing sympathetic tone. The medication midodrine (ProAmatine) 5-10 mg twice daily (morning and early afternoon) can be fairly helpful after six weeks of use. Warn them not to use the medication after 5 PM, or when lying down, as it can drive blood pressure too high. Lower the dose or stop if it causes too high of a blood pressure or shakiness. I will occasionally increase the dose to a maximum of 10 mg three times daily, with the last dose at 4 PM.
6. Medications that increase serotonin and dopamine. Prozac, Zoloft, and Dexedrine have all been shown to help autonomic dysfunction.
7. Some people find that a gluten- and milk-free diet is also helpful
Although all of these treatments can be combined, I would begin them in the order listed as needed.
Finding the Missing Link
Although we have given a simplified version, you will find that it serves very well clinically. But there is much more to the story.
Excellent research by Dr. Mark Sivieri in Maryland is showing that many people with fibromyalgia also are showing IgG1 and lgG3 antibody deficiencies. This expectedly contributes to the immune dysfunction, but research and clinical experience are additionally showing that these immune deficiencies are also associated with small fiber neuropathy, which is common in fibromyalgia. This is one of many factors contributing to the pain and also seems to cause a "shrinking" of the nerves involved in autonomic function.
Because of this, the QSART sweat test is another way of looking for autonomic function (which control sweating). Studies are showing that treating with IV gamma globulin actually can result in a growing back and recovery of these nerves, helping both the small fiber neuropathy pain and autonomic dysfunction.
So, we are now finding a missing link between immune dysfunction, autonomic dysfunction, and small fiber neuropathic pain.
We have found IV gamma globulin to be very helpful in a small subset of the most critically ill people with fibromyalgia and orthostatic intolerance. Essentially, these are people who are often housebound and bedbound. Getting insurance coverage for this expensive treatment can be difficult, and I will have my patients consult with Denise Haire (office@EndFatigue.com) to help guide them through the process of getting insurance authorization. She does an excellent job and is highly recommended. She can also help guide the practitioner on its use. It is important to start with a low dose of gamma globulin and work up to the half gram per kilogram IV each three weeks. Otherwise, significant Herxheimer reactions can be seen. Treatment benefits usually begin at about four months on the optimal dose.
Addressing the autonomic dysfunction and orthostatic intolerance seen in fibromyalgia can be fairly simple using the above quiz for diagnosis and the treatments listed above. In combination with the rest of the SHINE protocol, and even done on its own, the clinical benefits can be marked.
Fibromyalgia can be effectively treated. And you now have one more easy and powerful tool in your toolkit!
Please feel free to email me at FatigueDoc@gmail.com to request the free fibromyalgia treatment tools file, the orthostatic intolerance quiz above, and a link to a superb 27-page orthostatic intolerance information sheet written by my favorite orthostatic intolerance specialist, Dr. Peter Rowe at Johns Hopkins. Both you and the people you treat will find the information sheet to be very helpful.
by Jacob Teitelbaum, MD
Jacob Teitelbaum, MD, is the author of the best-selling From Fatigued to Fantastic!, and The Fatigue and Fibromyalgia Solution, and the popular free Smart Phone app Cures A-Z. He is also the lead author of four studies on effective treatment for fibromyalgia and chronic fatigue syndrome.
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|Title Annotation:||neurally mediated hypotension / Postural Orthostatic Tachycarida Syndrome|
|Date:||Nov 1, 2017|
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