Think about it a moment. We are a big bag of water. Ever wonder why it doesn't just all flow down to our legs when we stand up?
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 Hypertension-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 and very treatable part of what causes disability in CFS and fibromyalgia.
Just a quick refresher. Fibromyalgia essentially represents an energy crisis in the body. 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:
- Sleep. Which is why insomnia despite exhaustion is a hallmark of this condition
- Hormonal function
- Temperature regulation
- 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:
Hormonal support and Hypotension (Dysautonomia)
Exercise as able
To make this easier, there is a free Energy Analysis Program at www.EndFatigue.com , which can analyze your symptoms and lab tests.
I had this illness in 1975 and it left me homeless. So my goal is simple. Helping to make effective treatment for people with this illness available – to everyone.
So 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 the 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 this simple quiz can be quite reliable. It is free and takes about two minutes.
Self report Orthostatlc Grading Scale
Mayo Clin Proc. 2005;80(3):330-334
("Orthostatic symptoms" include worsening dizziness, fatigue, Racing heart or brain fog when standing)
Circle 0-4 below as best applies to you
A. Frequency of orthostatic symptoms
0 I never or rarely experience orthostatic symptoms when I stand up
1 I sometimes experience orthostatic symptoms when I stand up
2 I often experience orthostatic symptoms when I stand up
3 I usually experience orthostatic symptoms when I stand up
4 I always experience orthostatic symptoms when I stand up
B. Severity of orthostatic symptoms
0 I do not experience orthostatic symptoms when I stand up
1 I experience mild orthostatic symptoms when I stand up
2 I experience moderate orthostatic symptoms when I stand up and sometimes have to sit back down for relief
3 I experience severe orthostatic symptoms when I stand up and frequently have to sit back down for relief
4 I experience severe orthostatic symptoms when I stand up and regularly faint if I do not sit back down
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C. Conditions under which orthostatic symptoms occur
0 I never or rarely experience orthostatic symptoms under any circumstances
1 I sometimes experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (eg, walking), or when exposed to heat (eg, hot day, hot bath, hot shower)
2 I often experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (eg, walking), or when exposed to heat (eg, hot day, hot bath, hot shower)
3 I usually experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (eg, walking), or when exposed to heat (eg, hot day, hot bath, hot shower)
4 I always experience orthostatic symptoms when I stand up; the specific conditions do not matter
D. Activities of daily living
0 | My orthostatic symptoms do not interfere with activities of daily living (eg, work, chores, dressing, bathing)
1 | My orthostatic symptoms mildly interfere with activities of daily living (eg, work, chores, dressing, bathing)
2 | My orthostatic symptoms moderately interfere with activities of daily living (eg, work, chores, dressing, bathing)
3 | My orthostatic symptoms severely interfere with activities of daily living (eg, work, chores, dressing, bathing)
4 | My orthostatic symptoms severely interfere with activities of daily living (eg, work, chores, dressing, bathing). / am bed or wheelchair bound because of my symptoms
5. Standing time
0 | On most occasions, I can stand as long as necessary without experiencing orthostatic symptoms
1 | On most occasions, I can stand more than 15 minutes before experiencing orthostatic symptoms
2 | On most occasions, I can stand 5-14 minutes before experiencing orthostatic symptoms
3 | On most occasions, I can stand 1-4 minutes before experiencing orthostatic symptoms
4 | On most occasions, I can stand less than I minute before experiencing orthostatic symptoms
Scores of 9 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 checking blood pressures 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:
- Increase salt and water intake. I know. You are already "drinking like a fish." But you are also "peeing like a race horse!" This occurs because one of the hormone deficiencies is antidiuretic hormone (vasopressin – the "anti-peeing hormone), which leaves you dehydrated. In addition, salt is the sponge that holds water in our body. You need to eat eat large amounts of salt, sometimes even licking sea salt. You can simply do this from the palms of your hands. If you notice, will find that your body is craving salt. You will sometimes find that in an attempt to be healthy, many of you are salt restricting. That misguided advice is a good recipe to crash and burn.
- It is remarkable how much improvement many 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. You should wear them during the day when you are active (not when you 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.
- Improve adrenal function. This is a critical part of our holding onto salt and water. As discussed in earlier articles, some will benefit prescription from low dose hydrocortisone (do not go over 20 mg daily). In addition, natural adrenal support with Adrenaplex or Adrenal Stress End is very helpful for optimizing adrenal function.
- Salt and water retaining hormones (prescription). Florinef .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 .1 mg 1-2 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 1 to 2 weeks.
For those with problematic frequent urination during sleep, giving a dose of the DDAVP at bedtime can help with this as well. This is the same medication that is given to children who bed wet.
- Increasing sympathetic/adrenaline tone. The medication midodrine (ProAmatine) 5 – 10 mg twice daily (morning and early afternoon) can be fairly helpful after six weeks of use. Do 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 but 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.
- Medications that increase serotonin and dopamine. Prozac, Zoloft, and Dexedrine have all been shown to help autonomic dysfunction.
- 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. Those of you interested in a bit more of the science can read on.
Excellent research by Dr. Mark Sivieri in Maryland is showing that many people with fibromyalgia also are showing IgG1 and IgG 3 antibody deficiencies (deficiencies in our body's defense function) on blood testing. 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.
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 retreat who have 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. 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 (infection die off) reactions can be seen. Treatment benefits, often dramatic, 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!
For a superb 27 page orthostatic intolerance information sheet written by my favorite orthostatic intolerance specialist, Dr. Peter Rowe at Johns Hopkins, see http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
It's time for you to get well NOW!
Jacob Teitelbaum, M.D.,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 the lead author of 4 studies on effective treatment for fibromyalgia and chronic fatigue syndrome.