Combatting Raynaud’s Disease (found in 50% of fibro patients)

I had Raynaud’s disease LONG before I had fibromyalgia. It first started occurring when I was about in the 3rd grade. To me, this also is an indication that fibro is partially genetic and I was probably going to get it sooner or later. If you don’t know what Raynaud’s is, it’s a phenomena where your fingers and/or toes turn blue or entirely white in response to the cold. If going hypothermic, this would make sense– cut off blood supply to the extremities to preserve heat in the vital organs. For whatever reason, in autoimmune diseases and in some random people in the population, the body overreacts to the cold. It also makes sense to me to occur with fibromyalgia because 1.) it’s sorta-maybe-kinda-autoimmune-related and 2.) fibro patients are extremely sensitive to pretty much everything.

So how do we deal with this? If you’re like me and live in a climate with chilly winters, it’s pretty unavoidable, despite numerous layers, hand and feet warmers, and thickest of gloves or socks. But my Raynaud’s is far more severe than that. My sister has it too, but rarely, and not nearly as bad as I do. When I get out from underneath the warm covers, get out of the shower, on humid days, and even running in gym class gave me instant white digits. Sitting in a somewhat chilly room for an extended period of time is when they’ll go blue.

But today I learned something pretty darn effective. I saw that Rosemary oil was used to treat Raynaud’s so I figured, “why not?” and ordered myself a small bottle a number of weeks ago. We patients have tried everything in the book, what’s one more thing? Today was an especially cold day and figured I’d put it to the test. I rubbed in a whole lot of it about 10 minutes before going out to the bus stop, and to my amazement, even though my hands were freezing, no numbness or white fingers! The whole way to work, I was just fine. The effects seemed to where off in less than an hour because I went into our cold room for chemical supplies and my hands started going white again.

How does this stuff work? No idea. I’ve heard of people being prescribed Viagra to deal with the blood flow issue with the hands, but who knows.

My Fibromyalgia Regiment

My Fibromyalgia Regiment

Muscle and nervous tissue are cellularly very similar. So to me, as a trained physiologist, it makes sense as to why fibro patients experience nerve, brain, and muscle problems simultaneously. Moreover, we know the brain/nervous system control the body, but the way the brain communicates with muscle is unique. This also means that you can target both tissues at once with therapeutic agents/supplements.

Healthy muscles and neurons: fighting stiffness as well as physical and mental fatigue

Let’s start with talking about mitochondria:

Mitochondria are the energy producing parts of the cell and the brain and muscle  are packed with them (which makes sense since our brains and muscles have a high energy demand.) The process in which mitos make energy is called cellular respiration, with the ultimate goal being to make ATP, the molecule which is the energy currency in the cell. Interestingly, ATP is needed to relax muscle rather than contract it, which may seem counterintuitive at first, but that’s why there may be muscle stiffness in patients if cells are failing to make enough ATP molecules in mitochondria (fun fact: it’s also the cause of rigor mortis).  In fibromyalgia it is widely accepted that there are pathologies causing dysfunction in the mitochondria and therefore they require help to function normally. To help muscle pain, fatigue, and stiffness, nurturing your muscles, especially their mitochondria, is vital, as well as to help “fibro fog” and cognitive impairment.

In routine blood tests to check for organ failure, doctors will test kidney enzymes and liver enzymes. Here’s something to think about: muscle enzymes. One muscle is considered an entire organ in the muscular system. My muscle enzymes was elevated, indicating what would be analogous, in a sense, to muscle failure.

Magnesium Malate- Malate is a part of the Krebs Cycle, the series of reactions in mitochondria that produce a collection of cofactors which  carry high energy electrons to further go on to aid in the production of ATP (molecular energy). Providing your cells with malate allows for efficiency of the Krebs Cycle and therefore ATP production. 2.5 grams daily (yes, grams.) You could also drink apple cider vinegar diluted in tea to obtain malate.

CoQ10- After the Krebs Cycle, high energy electrons are shuttled through the electron transport chain (ETC) where the final product is that great energy molecule we love, ATP. CoQ10 is a coenzyme in the ETC that helps shuttle the electrons along and is necessary for good mitochondrial health. I purchase CoQ10 in its active form, ubiquinol, but it is often sold in its inactive form, ubiquinone (named as such because they are ubiquitous throughout all cells). Although the body can convert between forms, I’d prefer to have it readily available to my cells. 100 mg daily.

PQQ-Pyrroloquinoline quinone, a pretty nifty molecule. Studies have shown it plays a role in protection from oxidative stress to mitochondria as well as exerting neuroprotective effects. What’s more, it’s been implicated in mitochondrial biogenesis, where cells make new mitochondria. 20 mg daily.

Vitamin B complex- Many B vitamins are implicated in helping mitochondria with cellular respiration while others (B6) help make neurotransmitters (which are also dysfunctional in fibromyalgia). B1, for example, helps convert a molecule called pyruvate to acetyl CoA (which is used in the Krebs cycle) whereas B5 is a part of acetyl CoA itself. B7 is a coenzyme that is required for many enzymes involved in cellular respiration to function. Be careful though with the brand you buy. B12 for example is such a large molecule that it is mostly destroyed by stomach acid without a protective covering to last until it reaches the small intestine for absorption.

D-Ribose- Although it’s a sugar, intake of ribose isn’t the same as gulping down sucrose(table sugar.) D-Ribose is the sugar backbone of our best friend ATP. So can probably already guess where I’m going with this one. One teaspoon in my breakfast or water bottle, can be taken several times throughout the day.

Acetyl L-Carnitine– It is used to transport fatty acids to make acetyl CoA, the main substrate used to begin the reactions of the Krebs cycle in order to make energy in the mitochondria (we talked about acetyl CoA with B-vitamins). This helps with fatigue. What’s also great about acetyl L-carnitine is that it too can pass through the blood-brain-barrier, helping with fatigue and memory problems in neurons. 500-1,000 mg daily. Can be taken in separate doses throughout the day.

Alpha Lipoic Acid- ALA is an antioxidant. You’ve probably heard that these are great for you! But they’re especially important for fibro patients. When mitochondria are dysfunctional and unhealthy they produce ROS (reactive oxygen species). Since the mitochondria house high energy chemical reactions, if they can’t protect themselves properly when unhealthy, ROS damage mitochondria and other parts of the cell. What’s special about ALA is that it can pass through the blood-brain-barrier, a special lining evolved to protect the very fragile/sensitive tissue that is the brain. The disadvantage to this barrier is that while bad things are kept out, so are many good things. But ALA is one good thing that can get right through! 100mg/daily is the recommendation on bottles, but diabetic neuropathy patients have shown improvements with up to 800mg/daily.

Other antioxidants– There are MANY, MANY antioxidants out there. I take Andrew Lessman’s ProCaps ultimate antioxidants for starters.

Ca/Mg- Both Calcium and Magnesium are important in the healthy function of muscles. They help the contraction and relaxation of muscles work normally and are what helps the fibers in muscles interact. Have a spasm in your back? My mom always takes magnesium. Have a spasm over your whole body (fibro patients)? Maybe this will take the edge off. I definitely notice being tenser without it. Calcium, 500 mg daily, magnesium, 200 mg daily. Be careful with magnesium, too much also relaxes smooth  muscle in the intestines and it can get ugly.

Targeting pain and the brain

Phospholipids***THIS IS THE MOST IMPORTANT AND EFFECTIVE TREATMENT FOR FIBRO FOG I HAVE EVER TRIED.*** My fibro fog was terrifyingly severe– at 17, I felt like I had dementia and was losing my mind, but as soon as I started taking phospholipids it’s been 85% gone. It is probably the most important thing I take for fibro overall. The cocktail of different phospholipids and oils seems to nourish the brain. It’s not exactly clear but the brain may be using phosphtidylcholine (PC) to make acetylcholine (the neurotransmitter involved in memory).I take the powder by Andrew Lessman’s ProCaps because absorption and effectiveness is much better than the pills. I take about 1.5 tablespoons/daily. And it tastes like nothing, I put it in my oatmeal during breakfast but could easily eat it raw.

Vitamin D3- Vitamin D is more than just a vitamin. It is THE super vitamin. In fact, some people consider it more than just a vitamin. There are receptors for Vitamin D on every single cell in your body. Not to mention we need Vitamin D to absorb calcium. Evidence shows that fibromyalgia patients often are Vitamin D deficient and returning blood levels of Vitamin D to optimum decreases overall pain levels. Routine blood tests by your doctor should show if you’re deficient. If deficient, about 5,000 IU daily is safe. However, Vitamin D is fat soluble (you can’t pee it out if you take too much) so if  your levels don’t need a huge boost, taking it once a week should be OK.

Omega 3s- Omegas do a lot– I believe everyone should be taking them. For starters, they help increase endogenous cannabinoid levels. That’s right, believe it or not your body has its own cannabis system. You need cannabis, like a vitamin. It’s hypothesized that fibromyalgia patients experience a cannabis deficiency, preventing it from relieving pain. Omegas help increase levels of cannabis in the body a tad. Alternatively, medical marijuana of course is the most effective way to do this, but it’s not legal everywhere unfortunately, and even where it is, it is difficult to acquire and I have not had tried it. Omegas have also proven to decrease cardiovascular risks, decrease inflammation, aid in mental illness, and memory loss. Omega 3’s are essential fats, meaning the body cannot make them on their own, even though they’re required. Which means you must ingest them. They aid in making hormones and function in the health of cell membranes and their receptors. Autoimmune patients are also especially notable for their positive response to Omega3 supplementation.

5HTP- This supplement is the precursor to serotonin (also called 5HT) and will increase levels of serotonin in the brain.  Medicine has known for some time that there is dysfunction of neurotransmitters in the brain in fibro patients. Cerebral spinal fluid shows indications of metabolites of neurotransmitters in vastly abnormal levels. The drug Cymbalta (duloxetine) is a SSRI, which also increases serotonin levels by preventing its reuptake and degradation in neurons; and Cymbalta is one of the commonly prescribed medications for fibro. It is also used to help depression but without harsh drugs. I had a very severe reaction to Cymbalta called serotonin syndrome, but 5HTP doesn’t effect me negatively at all. Make sure to check for interactions with other drugs/supplements before messing with your neurotransmitters. I take 300mg/daily but dosage depends from person to person.

DLPA and L-Tyrosine- D-L phenylalanine is commonly used to treat chronic pain. It includes two forms of the same molecule and thus works in two different ways: first by preventing breakdown of endorphins (your body’s natural pain killers) and second it acts as a precursor to dopamine and norepinephrine and will increase these neurotransmitter levels in the body (these are other neurotransmitters going awry in fibro patients.) Cymbalta (duloxetine) commonly prescribed for fibro patients by doctors is also an NRI (norepinephrine reuptake inhibitor) which increases norepinephrine levels. An increase in dopamine is also achieved by L-dopa, a Parkinson’s drug which has shown some use in fibro patients in trials. As an amino acid (building block of proteins), it needs to be taken on an empty stomach about 30 minutes before meals so that its absorption is not interrupted by other proteins in your meal. Recommendations for chronic pain are 100mg, three times daily, but work up to that to prevent any reactions you may have. DLPA didn’t work for me. It doesn’t work for everybody because we’re all different. L-Tyrosine has been said to improve alertness, energy, memory, and reduces stress response. Some use it before exercising. It is a different precursor to dopamine and norepinephrine. Recommendation is 100mg/daily. Do not use it if you have high blood pressure or thyroid dysfunction.

Other supplements: for overall health or with unclear mechanisms of action

L-Theanine- Another amino acid, theanine is safer and is said to improve sleep, cause relaxation, and reduce stress. It hasn’t been elucidated clearly how it works. Theanine is structurally similar to glutamate, a naturally occurring amino acid in the body that helps transmit nerve impulses in the brain, so that is one hypothesis. I take between 100-300 mg/daily depending on how I feel.

SAMe- I have yet to try S-adenosylmethionine but it is a common treatment for fibro and is said to alleviate symptoms overall. It is unclear exactly how it’s helping. Please check interactions with SAMe, there are several.

Ginko Biloba- Ginko is said to help memory, even in Alzheimer’s patients. It is unclear how it works but it may improve circulation and oxygenation.

Ginseng- Said to improve memory, physical stamina, endurance, sleep, and prevent muscle damage, ginseng contains many substances that create a variety of targets in the body. There are many interactions with ginseng and drugs so please check!

Friendly Flora- Ah, probiotics. If you’re like me, you’re also a fibro patient who suffers from IBS and nurturing the gut with good, symbiotic bacteria is very helpful. Emerging research shows that the gut microbiome has a vastly more enormous role in many vital aspects of our health, more than you could possibly imagine. Name an illness, there’s probably a link to the gut microbiome.

Turmeric and ginger- Both spices are said to be great for one’s overall health. Turmeric is packed with curcuminoids and is amazing for inflammation, even with diseases such as diabetes which causes a lot of inflammation of fat tissue. It’s also used to prevent cancer and shows great promise in doing so.

Epsom salts- Not sure how exactly the salts are getting into muscles during bath time but it’s worth the soak in the tub!

Drugs I’m on or have tried

Lyrica (pregabalin)– I take 150mg twice daily. Lyrica was great at first, but similar to what I’ve heard from many other patients, it stopped working and I had to constantly increase my dose. I want to get off Lyrica. I can’t keep going up and up.

Flexiril (cyclobenzaprine)- I am prescribed to take between 5 and 10 mg at night depending on how I feel. It helps when my muscles are tense and I can’t sleep but leaves me drowsy.

Minastrin (Estrogen therapy)- First things first, I don’t call Minastrin “birth control” or “oral contraceptive” because I think that’s misleading. There are medical reasons for controlling one’s menstrual cycle. Fibromyalgia gave me PMDD (the worst nightmare you could imagine) and overall my fibro pain was amplified drastically during my cycle and caused nasty migraines. Reducing my cycle to four times a year with Minastrin was an immense help and even improved my grades.

Nortrypteline- I started off on this one. I believe it was 30 mg/daily which had some effect but when I went up to 50 mg I started passing out and was shuttled onto the next drug.

Cymbalta (duloxetine)- I had a horrible experience with Cymbalta. I got serotonin poisoning, causing seizures, vomiting, heart palpitations, you name it. It was the worst experience of my life as far as health concerns.

Treatments I’ve heard may work & treatments I DO NOT recommend

Kratom- I’ve heard many people tell me how helpful Kratom is. Kratom is derived from a plant and contains a cocktail of at least 25 active drug compounds including opiates and stimulants that is NOT FDA regulated and is OTC because it is relatively new and hasn’t been banned or even studied yet. Although I’ve heard it’s beneficial, it contains serious drugs that haven’t even been tested, we don’t even know what many of them are chemically, and not even pre-clinical or clinical trials have been done. Doctors have no idea what the side effects are, how it works, or what the toxicity may be. It could be doing serious damage to the liver or God knows what else. Yes, it may be approved in the future and be very helpful, but it just hasn’t gone through the process of testing to be understood well enough to trust putting it in my body. Side effects have shown depression of breathing, liver toxicity, addiction and withdrawal, seizures, psychosis, tachycardia (heart racing), insomnia and others. It has been linked to 15 deaths in the past two years. I know it’s frustrating how limited in effectiveness most drugs are and doctors don’t understand so much of what we go through, but please do not risk your health and think you know better than the doctors scientists. Not to mention buying it from two different manufacturers can be completely different products because it’s not regulated– 20 ounces from one company may be required but the next company may only require one ounce and now you’ve assumed you needed 20 and overdosed. Your safety isn’t worth putting at risk.

Low dose Naltrexone- This is an off label treatment I’ve heard some doctors prescribing. It seems to help a lot and helps you get off Lyrica. I can’t say much more than that, but my doctor doesn’t approve of giving off label drugs if they haven’t gone through clinical trials yet.

Medical Marijuana- Cannabis and THC have been shown to be extremely effective in treating pain. There are many different strains of marijuana and street pot is very different from the medical marijuana because it’s bred to get you high. There are strains with reduced amounts of the “high” chemicals and packed full of “pain killing” chemicals. If you missed it above, I talked about how your body actually uses its own endo-cannabinoid system, meaning it makes its own cannabis, vital for your body. It’s not anything new to your system but it’s postulated in illnesses like fibro, we have cannabis deficiencies which require supplementation. CBD oil is one way around the legal limitations of marijuana, but again, it’s not regulated. Buying it from two different manufacturers can be completely different products– 20 ounces from one company may be required but the next company may only require one ounce and now you’ve assumed you needed 20 and overdosed. Trust the experts and do things legally and safely. I have yet to acquire medical marijuana but it’s legal by me so I hope to try it.