A Journey into a Chronic Illness Survivor: Mast Cell Activation, Fibromyalgia, Interstitial Cystitis, Osteoarthritis, A blog of what has helped and where I go from here.
Today I need to take a few minutes and give my readers an update on life. Life has been a struggle for others recently, I have taken time out from writing, authoring, and blogging to actually assist family in their time of need. I actually had to return to my previous position before I became unwell 6 years ago, to assist my father. Let me tell you, I THANK THE STARS ABOVE, that I am well enough to do so.
Then the flu hit. Let me tell you, the flu this year is no joke. Welcome to my world of fibromyalgia, and mast cell activation. I actually had to see my primary care doctor Friday before last. After over a year of not NEEDING to see him. The news is beyond AMAZING.
First, it was his assisting nurse that asked what I had been doing to be 30 lbs lighter than what I was the last time I was in. I told her I went all natural with my treatments with supplements and things. No extra exercise, with the exception about 6lbs of that was because I have to go into a workplace from 8 a.m. to 5 p.m. where I am forced to walk, at least a mile a day, not too much. Sometimes, I just choose to be “out on the floor” to get some exercise if I feel motivated to.
I can’t rave enough about the fact that my neuropathy has not been much of a problem, except for a few days. Those few days happened to start after the flu, and now I’m dealing with the mast cell inflammatory response to an upper respiratory infection, dual ear infection, and now laryngitis. To be honest, I didn’t know humans could produce that much mucous, but here by body is, being an over achiever and giving it the old Guiness Book of World Record try.
The other astounding results that my practitioner noticed is that my blood pressure was a cool 152/92 or somewhere in that neighborhood when I was there meeting with them. ”Slightly elevated” yet a darn good improvement over the last 4 to 6 years where I was in cardiac crisis most of the time 220/182. I’ll take that!
The coughing and lack of sleep has stressed my body out more than normal lately along with the laryngitis, so that has been a task to handle this week before a holiday, along with other obligations that I have to help others take care of. That being said, I have noticed a pickup in the neuropathy in my feet. My artillery of supplements has pretty much stayed the same. I did add Saffron a little more regular, and there is a new one that I am trying and will let you know if it’s worth a try as well. I just started it today, so I cannot even give you a full review of it as of yet, but that is Cayenne Pepper, and since the neuropathy started in my feet today, I’m very well hoping that it shows me improvement in pain. I also know when I do not get a proper amount of sleep my nervous system has a tendency to go into overdrive.
If you are reading this, I wish you the best during this holiday season. I am grateful for my health as well as the ability to help others with theirs. If you have made it through this year and headed into 2024, let me say congratulations! No matter the circumstances you have been through, you made it, and there is always hope, help, and love the next day! Proud of you! Much love this Holiday Season from Your Author to you! –Misty Romack
Fibromyalgia from a patient’s perspective is probably one of the hardest syndromes to navigate. Not only for patients but also for doctors. What was once thought to be a dysfunction of the peripheral muscoskeletal system has now become an obvious disorder of the entire muscoskeletal and peripheral nervous system. This leads to chronic widespread pain, and dysregulation of many different systems, including emotional regulation in turn amplifying pain perception.
“Fibromyalgia was originally thought to be a peripheral muscle disorder; however, recent studies have shown the presence of central pain susceptibility. Fibromyalgia patients have more reactions to pain compared to normal individuals, as in they have a lower pain threshold. Problem solving skills and defining and experiencing emotions are decreased. Therefore, they have difficulty in expressing emotions, and pain sensitivity increases in the presence of psychostressors,” states the Turkish Journal website.
Alexithymia has currently been studied when it comes to patients with Fibromyalgia. Alexithymia is referred to as emotional blindness where a person has significant challenges in recognizing, expressing, or describing one’s own emotions to others around them. This can have a significant impact not only in attachment but also interpersonal relationships. Alexithymia is commonly recognized and prevalent among individuals with autism spectrum disorder (ASD).
Studies generally show that fibromyalgia patients are individuals who have difficulties in expressing their emotions. Alexithymia rates were found to be high in patients with fibromyalgia,” states the Turkish Journal website.
It is understandable that Fibromyalgia patients have a dysregulation of emotions and responses to chronic pain. Long term emotional distress amplifies many different aspects of Fibromyalgia. It can instigate new pain, thoughts of hopelessness, financial distress from a multitude of physician visits, along with medical anxiety of having new symptoms appear out of nowhere. Patients can also feel guilty for not being able to complete simple tasks along with having difficulty thinking or remembering. Fibromyalgia also creates an environment for patients that either sleep too much or too little, changes in appetite, unusual anger and/or irritability, and the need to isolate from people or activities to navigate their symptoms.
If you feel as a patient that you struggle with the above listed symptoms, it can be helpful to be assisted with different options available pharmaceutically coupled with cognitive behavior therapy. Definitely seek help from your physician promptly. Stay calm, stay cool, collect your thoughts, and continue to educate yourself about Fibromyalgia.
A few days ago, I ended up with this lovely sinus migraine. Now remember, my journey is slightly different than most. Mast Cell Activation can make all kinds of things swell and inflame when they are agitated. My ears were feeling clogged, my drainage tubes in my neck hurt, my whole head hurt. Not acetaminophen and sinus worked, not an OTC migraine medication with caffeine worked, nothing. I even took a nap to kick it. Still nothing.
The powers that be showed up with an Amazon package after my nap that had this Black Seed Oil** in the package. I had ordered it, seeing a video clip on the world wide web about a woman fighting breast cancer, and I was curious. I didn’t really look much up on that day, but I had ordered it, and it showed up. I thought, oh well, something else for science, so I popped one in my mouth, and grabbed my drink, and down the hatch it went.
What is Black Seed Oil**? It is of course black cumin seeds crushed. Mainly known as Nigella Sativa, but the active component that is garnering the most attention is the thymoquinone (TQ) it contains. This has been studied as a therapeutic agent in just about everything. However, I found no specific articles for Fibromyalgia itself, all the comorbid conditions and inflammatory conditions that Fibro can cause have been studied.
“Nigella sativa (N. sativa), commonly known as black seed or black cumin, belongs to the family Ranunculaceae. It contains several phytoconstituents, thymoquinone (TQ), thymol, thymohydroquinone, carvacrol, and dithymoquinone. TQ is the main phytoconstituent present in N. sativa that is used as an herbal compound, and it is widely used as an antihypertensive, liver tonic, diuretic, digestive, anti-diarrheal, appetite stimulant, analgesic, and antibacterial agent, and in skin disorders,” states the PubMed website.
One caveat, please learn from my mistakes. NEVER take it on an empty stomach. You have been warned, you will belch it a lot. However, 20 minutes later, my headache was gone, my ears and sinuses drained, and that was that. I only took one, and the dosage says to take two on the bottle! I was hooked, and pretty darn curious. I went on a research deep dive to find out all we needed to know.
There’s SOOOO MANY STUDIES ON THIS stuff…. it will blow your mind!!!! It’s actually known as the Gold of the Pharoah’s. It’s actually mentioned in Greek Medicine, it’s been used for more than 2000 years for “many diseases except death”. For example, it has been studied for the stress-sleep-immunity axis where patient’s sleep and immunity improved after 7 days. Antifungal activity, because it helps kill Candida. Used in treatment for polycystic ovarian syndrome, and fertility in male and female. Kills oxidative stress, been tested for its use against ischemic stroke. If you use it a salve, it promotes wound healing, and if taken by mouth helps heal and aid with things like eczema.
You think I’m done yet? Not hardly, Black Seed Oil** is also an antioxidant. Helps heal dry eye too (a common comorbidity to fibromyalgia). It’s actually been used for arthritis, osteoporosis, and another one common to Fibro, peripheral neuropathy! Read that again! Oh, and bonus points for diabetes 2, inflammatory neurological disorders and diseases as well, Alzheimer’s, Parkinson’s, Huntington’s. Are you convinced yet? Not to mention there is some anti-allergic properties as well, obviously by the whole sinus experience. Then I found the article on Pulmonary effects.
Let’s talk about cancer for a minute, physicians are already using it in some places in conjunction with chemotherapy, and I’m talking about many different cancers, like breast, lung, and gastrointestinal, including pancreatic.
Also found a study where they proved that it had no toxic effects on liver, kidneys, blood serum levels at all after 8 weeks of taking it 3 times a day. There were no ill effects except for your cholesterol LDL levels were going to go down, along with your BMI, and your HDL cholesterol will go up a smidge to balance out, and it helps your blood pressure to regulate. So, I’m on this journey. I jumped this bandwagon, and along for the ride, adding it to my arsenal of vitamins I’m already on.
“Because the biological characteristics of TQ mainly include anti-inflammatory and anti-oxidative properties, nanocarrier delivery of TQ may play a key role in the treatment of chronic diseases caused by sustained inflammation. In addition, a recent study demonstrated the killing activity of TQ against COVID-19. TQ may thus represent a new approach to developing a new class of anti-viral drugs. Therefore, the targeted delivery of TQ combined with biological nanomaterials will become a research hotspot to treat various kinds of human chronic diseases,” states the MDPI website on Molecular Sciences.
You read that right! Black Seed Oil** is an anti-viral too…. on several viruses that have been tested so far. Remember, I follow the science. I’m not a doctor, I’m a patient. I’ve been on it a week for 3x a day so far, and all I’ve seen so far is I don’t have a sinus infection whereas I would have already been to the doctor to help me calm down the inflammation that is blocking my sinuses and ears holding it all in. I’ll take it. Oh, and a bonus points to my cousin who had an infection in his tooth the same day and that his face swelled up with chipmunk cheeks then after taking it, swelling went down. I’m game.
**I am an Amazon Affiliate mainly for the convenience of sharing easily the products I use in a convenient way to my readers so that they can easily gain access to it. I do receive a small commission that goes towards helping keep my blog running. Typically, a few cents if you order by the links provided. I highly recommend when adding or changing any regimen you discuss with your primary physician and pharmacist before making changes. I personally, have went all natural in treating my fibromyalgia and co-morbid conditions to avoid reactions to pharmaceuticals. I hope you find wellness in your journey! –Wellness Wishes from Your Author!**
We hear it all the time, another supplement that we should take. Something else to swallow, but why? My personal opinion as a Fibromyalgia patient is that I’ll swallow 30 supplements over 30 prescriptions any day. The human body is designed to heal, if we feed it naturally. How did we last this long in the role of evolution, if we weren’t designed to grow, learn, heal, and adapt?
Magnesium is necessary for human bodily function. In fact, for the role of a patient that has neuropathic pain and pain hypersensitivity magnesium can decrease this effect. Magnesium blocks the calcium influx that decreases that hypersensitivity and inhibits central sensitization from happening in the first place. What’s important to note is that as we age our magnesium consumption seems to lower, and our capability of absorption decreases leading to inflammatory stress and poor sleep quality.
A study titled Psychological and Sleep Effects of Tryptophan and Magnesium-Enriched Mediterranean Diet in Women with Fibromyalgia actually concluded with the following information.
“Daily consumption of a Mediterranean-diet enriched with a high dose of TRY and MG (60 mg of TRY and 60 mg of MG) by middle-aged women with fibromyalgia during 16 weeks had modest beneficial effects on emotional processing, decreased fatigue, anxiety, and depression, and reduced possible eating disorders and dissatisfaction with body image, but did not modify sleep quality,” states the MDPI website on Environmental Research and Public Health.
I’m certain, as a patient myself, that most of us do not get proper nutrition with the varying different co-morbid conditions that we have. Especially for ones that suffer from heartburn influxes, and irritable bowel, and swallowing issues. After all our central nervous systems are all dysfunctional, our receptors are on full volume, we are lucky to have the energy to cook let alone consume food at all somedays.
“Several research studies have shown that patients with chronic pain do not follow the recommended dietary intake of most vitamins and minerals; and such deficiencies have been associated to several pathological conditions of chronic pain, including FM. Additionally, studies have investigated the impact of magnesium (Mg) on pain improvement. Mg is an important trace element for many metabolic functions, also vital for the activity of over 300 enzymes. Mg deficiency has been associated to headache, migraine, fibromyalgia, increase in C-reactive Protein (CRP), osteoporosis, cardiovascular disease, and other conditions,” states the BMC website on Advances in Rheumatology.
Fatigue, muscle weakness, irritable bowel, and paresthesia are similar to the symptoms of deficiency in Mg, which are all symptoms of FM. If a Mg deficiency does exist, it may have a shared link among stress, inflammation and metabolic syndrome, this may cause an inappropriate response with the activation of intracellular calcium (Ca). So it stands to reason to supplement Mg when necessary. Magnesium (Mg) deficiency actually has a name, it’s called Hypomagnesemia.
“Although more than 99 % of the total body magnesium is located in the intracellular space, intracellular magnesium measurement is not included in daily basis in the clinical laboratory, being measured in serum and/or plasma. Hypomagnesemia – considered when serum magnesium concentration is below 0.7 mmol/L– is common, especially in subjects with comorbid conditions. The causes of hypomagnesemia can be broadly classified into four categories: gastrointestinal loss, renal loss, secondary to medications, and decreased intake. The prevalence of hypomagnesemia depends on multiple factors and varies according to different healthcare scenarios: 2.7 % in the general population, approximately 10 % in hospitalized patients, most commonly in critically ill patients, 14.7 % in patients with chronic kidney disease, 30–80 % in persons with alcohol use disorder and 10–60 % in patients with diabetes. Mild deficiency can remain undetected because it often presents non-specific symptoms, such as irritability, nervousness, mild anxiety, muscle contractions, weakness, fatigue, and digestive problems. A more pronounced magnesium deficiency can cause more severe symptoms of neuromuscular, cardiac, or nervous disorders,” states the De Gruyter website.
Okay, the big question, which is the best magnesium to take?! There seems to be a plethora of them to choose from. Personally, I take a triple form of Magnesium. The most highly absorbable is actually organic magnesium salts. If you can tolerate Magnesium by mouth, using Magnesium Citrate, Glycinate, Malate can help. Be forewarned that Magnesium Oxide is the one that has the tendency to have the most pronounced gastrointestinal issue effects. I highly recommend especially for FM patients to avoid Magnesium Oxide especially if you already have IBS, we want our small bowel to absorb the magnesium to help ourselves at the intracellular level rather than reject it.
“A daily dose of 800–1,600 mg (40–80 mEq [20–40 mmol]) can be used to treat moderate to severe hypomagnesemia. Patients with gastrointestinal disorders that are not easily correctable can be challenging to treat because oral magnesium preparations can cause diarrhea and potentially worsen the deficit. Oral preparations should be started at the lowest dose and only gradually increased. Magnesium oxide tends to cause more gastrointestinal intolerance than other oral preparations” states the De Gruyter website.
What got me started on the Magnesium pathway to begin with is that my blood pressure was all kinds of crazy and no heart medicine they put me on did anything for it. I had paresthesia in my veins (where they shrink) and in my carotid arteries to my brain. Once I started my supplementation my blood pressures started to calm down a bit, they are not perfect but doing way better than they used to be.
Like many other vitamins and minerals that work hand in hand. It is important that if you are supplementing with Magnesium that you are also taking a Vitamin D supplement for maximum potential of absorption.
“Magnesium absorption and excretion are influenced by different hormones: 1,25 dihydroxy vitamin D can stimulate intestinal magnesium absorption, estrogens are known to stimulate TRPM6 expression and parathyroid hormone (PTH) is involved in magnesium reabsorption in the kidney, absorption in the intestine, and release from bone excretion” states the De Gruyter website.
It’s been several months now, and I’m going to start sharing with you the really awesome part of my life. I’ve not needed prescriptions, and I’m tackling Mast Cell Activation, Fibromyalgia, Interstitial Cystitis, and all the other junk that goes along with these nasty things Naturally. Recently, my friend and I were discussing the importance of Folate (Methylfolate) and Cobalamin (Vit B12).
“Vitamin B12 deficiency is more prevalent in the elderly and can develop as a result of malnutrition, malabsorption, chronic alcoholism, and chronic use of common medications (e.g. metformin, PPI, methotrexate) along with other causes. A wide spectrum of hematological and neuropsychiatric manifestations exist with the most common being Megaloblastic anemia and subacute combined degeneration, respectively. The mechanisms leading to the manifestations specific to these two organ systems are thought to be different. The severity of neuropsychiatric presentation is reported to be inversely proportional to that of hematological presentation, thus making it uncommon for both to be readily apparent simultaneously, ” states the PUBMED website.
What does that mean for us? Cobalamin (Vitamin B12) deficiency can impact many different factors in our lifestyles just from neurological to neuropsychiatric by themselves. Cobalamin is very important when dealing with pain and varying symptoms in Fibromyalgia Syndrome (FS).
“Vitamin B12 (VB) is a necessary vitamin for routine cell activity and metabolism. A deficiency in VB causes symptoms that are also frequently observed in FS, such as weakness, fatigue, general muscle pain, and sleep disturbances. Interestingly, subnormal VB levels may cause these symptoms. Previous studies have reported that FS patients have similar VB levels to healthy individuals. VD deficiency was associated with fatigue and generalized pain. VD deficiency is seen much more often in females than males, and FS is usually seen in females,” states the Sciendo website.
What makes it interesting to know is that Cobalamin deficiency can be caused by medications such as anti-seizure medications, and H2 histamine antagonists. These are medications such as gabapentenoids, and heartburn prevention medications and histamine blockers. These are medications that are regularly taken by Fibromyalgia patients.
“VB deficiency could disrupt methionine synthesis enzyme activity and cause nerve demyelination. Demyelination of the nerves causes a decrease in the pain threshold and general body pain in patients. There is a strong relationship between VB levels and general body pain, and most patients’ pain symptoms may decrease with VB supplementation,” states the Sciendo website.
Knowing that FS also includes a high occurrence of patients that also have small fiber neuropathy and that with a cobalamin (VB) deficiency can cause nerve demyelination makes it blatantly obvious that it can actually contribute to our pain receptor dysfunction.
Folate can be found in leafy green veggies like kale. OldieFan/Pixabay
So along with co-morbid conditions like IBS and various other conditions than can create a malabsorption problem, I started searching out the best way to get the most out of my vitamin supplementation. That was looking at methylated versions of what I was taking. Methylated, Liposomal, and Liquid is to get the most out of your vitamins and ensuring that you are getting what you are taking.
Let’s discuss a little bit about folate, and how this works. Folate works in conjunction with Cobalamin (VB) for energy metabolism, and cell function and repair. What is interesting to know is that folic acid, which was created and added to food sources, does not metabolize correctly and can be stored, to actually block the folate pathways, which can cause a folate deficiency.
“Food fortification and increased vitamin intake have led to higher folic acid (FA) consumption by pregnant women, and some studies have suggested that buildup of unmetabolized folic acid may have negative effects on folate pathways. Recent studies have suggested that unconverted folic acid may affect folate pathways by interfering with folate-dependent enzymes and metabolism. Folate deficiency during pregnancy has been associated with developmental abnormalities such as neural tube defects in the fetus and autism spectrum disorders in children. These disorders can be prevented and treated with high-dose vitamin B9. Folate receptor antibodies are significantly associated with the disruption of brain development in the fetus and function in later life. Folate is actively transported to the fetus, and this transport can be blocked by an antibody against the folate receptor. Folate receptor antibodies are significantly associated with neural tube pregnancy and autism spectrum disorders, and folinic acid treatment in the latter condition has shown improvement in core behavioral deficits along with normalizing the CSF folate status. ,” states the MDPI website.
What is more interesting that if those pathways are now blocked with unused and unprocessed folic acid, we no longer can methylate and do DNA repair. The need to take a methylated version of Folate known as Methylfolate, is the only way to “skip” over the blockage of built-up folic acid so our bodies can get the proper micronutrients. During that methylation process of folate, it uses cobalamin (VB) to help detoxify, methylate, and open back up our pathways for proper DNA repair.
“Folate is a water-soluble B vitamin that plays a critical role in nucleic acid biosynthesis, DNA repair, and methylation. Adequate folate intake is vital for cell division and homeostasis because folate coenzymes play essential roles in nucleic acid synthesis, methionine regeneration, and the shuttling, oxidation, and reduction of one-carbon units required for normal metabolism and regulation. Low folate status is associated with elevated plasma Hcy, which are both risk factors for cardiovascular disease, stroke, megaloblastic anemia, neural tube defects (NTDs; congenital malformation of the fetus), depression, Alzheimer’s disease, and tumors,” states the National Library of Medicine website.
Using methylfolate or (5-MTHF) is the optimal supplementation especially in people that have MTHFR gene mutations.
“5-MTHF has many advantages over folic acid as a supplement. 5-MTHF participates directly in one-carbon metabolism without activation. Thus, 5-MTHF supplements should bypass the limitation of low DHFR activity and the decreased efficiency caused by several common polymorphisms of MTHFR and other enzymes. Unlike folic acid, data suggest that 5-MTHF will not mask vitamin B12 deficiency. 5-MTHF is also more effective than folic acid supplementation in improving folate status. Studies on the safety, tolerability, and retention rates of 5-MTHF/5-MTHF-Ca have suggested that 5-MTHF-Ca is a safe alternative to folic acid as a source of folate and may be particularly advantageous for individuals with MTHFR defects, who could have difficulty processing folic acid from supplements or fortified foods,” states the National Library of Medicine website.
What has been found and published is that B12/Folate can actually benefit Fibromyalgia patients as found in the following study.
“Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia. It’s important to be alert on co-existing thyroid dysfunction, and we suspect a risk of counteracting interference between B12/folic acid and certain opioid analgesics and other drugs that have to be demethylated as part of their metabolism,” states the Plos One website.
What have I personally experienced? That when I stopped my prescription medications, and I discovered this information. I started Methylfolate and a methylated version of B Complex together, and things have changed drastically for me. Since they are water soluble vitamins, I take them 3 times a day. What my body doesn’t use disposes of them. Knowing that I had already been taking H2 antagonists because of my mast cell activation and different allergic type reactions, I knew that I was already B12 deficient. This didn’t even include the short period of type that I was on gabapentenoids, in all hopes and purposes of stopping the pain. I’m not entirely pain free, but I did notice that my brain fog dissipated, and I felt my arms and legs “tingle” knowing that essentially it started repairing my nerve endings right away.
I may sound like a broken record if you’ve read through my blog, but I’m telling you that I don’t regret it, and I highly suggest you try this first. I also supplement with a methylated Triple Magnesium for optimal muscle health and regeneration along with Vitamin D supplement as well. I’m not the only one either, my mother and sister are in the same boat as me, and we are all improving so greatly. I cannot recommend it enough.
If you found this and read it all the way through. Thank you and congratulations. It’s the first step in your wellness. Always remember, I’m not a doctor, I’m a patient, living this life. I have no affiliation with medical field or the product companies that I use but I am an Amazon Affiliate for the soul purpose of generating a small income if you choose to order from the links provided on the products that I personally use. This is to assist in keeping up the blog, and to give my readers the convenience of finding them quickly. As always, please speak with your primary and pharmacist before adding anything or taking away anything from your regimen. –Wellness Wishes from Your Author!
Fibromyalgia comes with many comorbid conditions that can be directly affected by mast cell reactions. Some conditions can include bladder pain syndrome/interstitial cystitis (BPS/IC), gastrointestinal symptoms (GI), neurologic inflammation and pain, and mast cell dysfunction and disorders.
Mast cells in the skin are the guardians that quickly react to stimuli that disturb a person’s homeostasis. Mast Cells (MCs) are found in the mucous membranes of the respiratory along with the digestive tract along with submucosa and connective tissue adjacent to the conjunctiva and skin. MCs are part of the pathogenesis of allergic, auto inflammatory and cancer disease as well.
Since our skin is the largest organ of the body that protects us from external physical, chemical, along with microbiological factors. MCs are one of the representatives that react first in the immune response. MCs are part of both the innate and adaptive immune responses.
Neurological Inflammation & Pain
“Thalamic mast cells contribute to inflammation and pain, by releasing neuro-sensitizing molecules that include histamine, IL-1β, IL-6 and TNF, as well as calcitonin-gene related peptide (CGRP), HK-1 and SP. These molecules could either stimulate thalamic nociceptive neurons directly, or via stimulation of microglia in the diencephalon. As a result, inhibiting mast cell stimulation could be used as a novel approach for reducing pain and the symptoms of FMS,” states the PubMed website.
“Mast cells involved in allergic reactions are distributed throughout the blood vessels, lymph glands, and nerves of the bladder, as well as the bladder smooth muscle and mucosa. Mast cells activated by the involvement of neurological, immune, and endocrine factors are thought to play a central role in the progression of IC/BPS in many patients,” states the International Neurology Journal website.
Gastrointestinal Pain & Inflammation
“Diet modification in patients with fibromyalgia by specific histamine release test improves certain clinical parameters related to the symptoms of the digestive sphere, compared to the control group. Our work opens a possible way of non-pharmacological treatment to improve some symptoms of this very prevalent disease,” states the Rheumatologia website.
The identification of the DAO enzyme deficiency in FMS patients has made it obvious that histamine and mast cell reactions directly correlate for a lot of the sub symptoms of Fibromyalgia and it’s associated pain.
DAO deficiency can create a histamine intolerance in FM patients. Photo cred:meineresterampe/Pixabay
“Associations between fibromyalgia symptoms and candidate variants of the AOC1 gene in DAO enzyme activity. Identification of reduced DAO activity may improve the quality of life and treatment of symptoms in fibromyalgia patients.” states the Frontiers website when discussing Frontiers in Genetics.
DAO is an enzyme stored in tissues but primarily are found in the renal and intestinal mucosa. DAO’s purpose is to catabolize, or break down, histamine and diamines. Deficiency in DAO can create Histamine Intolerance (HIT). This can lead to neurological, gastrointestinal, and epidermal disorders.
What is recommended to assist patients in treatment is an elimination diet of high histamine foods can help patients along with recommendations of the following:
“Inhibitors of mast cells would be useful in the treatment of FMS. Natural molecules could include the flavonoids, luteolin and tetramethoxyluteolin, alone or in combination with other substances selected to reduce stress. Other natural molecules could include palmitoylethanolamide, which apparently inhibits neuro-inflammation and reduces pain,” states the Frontiers in Cellular Neurology website .
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Recently I have been doing a lot of series work on Fibromyalgia for Newsbreak. I have been sharing a lot of information there on the research I had recently done. One thing that during my research I discovered a lack of L-Serine was discovered in Fibro patients’ urine. L-Serine is an amino acid that our bodies use daily, and usually produce, and there is a block. In true fashion, I have been the guinea pig, so you can reference previous posts.
On June 23rd, I had posted that I was making some great progress. I had to leave town for approximately 10 days shortly after that post, and I decided that would be the time to stop using L-Serine to see if there was a noticeable difference. Let me tell you now, I regretted every minute of being of L-Serine. The first few days didn’t seem to be that bad, in fact for the first 4 days or so, I couldn’t tell an issue at all. However, I stayed in mainly a controlled type of environment and temperature most of the time, however we were close to Chicago and the Canadian Fire Particulates contaminated the air we were breathing. When I say controlled environment, I mean hotel, even 72 degrees, and event was also a controlled 72 degrees, not heavy activity, mainly brain power was used.
Camping stock photo from: xuanduongvan87/Pixabay
Well fast forward to the July 4th weekend, and I changed locations with the family and went camping in Kentucky. I was out in the heat, humidity, and storms that decided to grace our family “adventures”. Lovingly my mother has coined our family vacations with “family adventures” because nothing ever goes to plan. During the flash flood at our campground, the pain started to sneak up on me. First it was the knees, and by the time I drove home, then this morning, I was full blown burning and aching. In fact, I woke up with the burning and aching in the neck and back of my shoulders, headache….the works. I actually had a bit of brain fog this afternoon which hasn’t happened in what seems like forever, I found myself searching for a few simple words.
Before I sat down to write this, I took a dose of L-Serine . Waiting for some of the pain to subside now. So, for the ones who incorporate L-Serine into their regimen, trust me, you are going to know it if you forget it for too long. Praying for relief quickly.
During my research and reporting for Newsbreak….. I’ve found some valuable information that I would like to share. If you found me due to the app, then follow the author, share, and like! That way you stay up to date and notified when I continue to do more research for myself and you guys! **Note: I am an Amazon Affiliate to support my page and all the work I do here. So if you do click the links to the products that I list, I make a very small compensation, to support my website. Thank you for your support!**
Currently I am continuing to “Methylate” I probably will never stop doing that. Methylfolate and Methylated B Complex have been a game changer for me. Since I have started doing that, my GI has seemed to calm down greatly and doing its thing like it is supposed to. I started processing a lot more histamine and not degranulating as much as far as my Mast Cell Activation. Which has been amazing. I’ve been pushing my limits, and there are still limits to my histamine tolerance. I went dangerously all in and tried eating shrimp, peanuts, started drinking my favorite margaritas again on a regular basis. I did “hit a wall” at one point, where I did have to take antihistamines a few times again, but I never have went into a full blown Mast Cell Activated reaction even when I pushed my limits. That has been a blessing.
I tried a few versions of B Complex, and the best thus far that I have found was this Methylated version. There are several loved ones around me that are also taking these supplements as well. These are individuals with different ailments than I. For example, one person has Lupus, another two just have ADHD, and then there is yet another individual that is otherwise healthy but struggling with bouts of depression, and one person with COPD. None of these individuals have interference with any other medications that they are taking because these are vitamins and are water soluble. That means after 4 hours your body urinates them out if they are not used.
So the few different versions of B Complex that weren’t methylated that we used, had a tendency to irritate stomachs and make your urine a higher concentration of yellow. The current version gives no effects other than a lighter yellow urine, and if you are drinking electrolytes and proper amounts of water, it becomes almost unnoticeable.
I had no idea that just methylating would do so much good for myself. Let alone others. The energy boost alone has been amazing in itself. The ADHD users that I know, are noticing after a few weeks that their ADHD symptoms virtually disappear during use, making them more focused, with energy, that doesn’t require caffeine consumption. For LUPUS, there has been new hair growth, great energy, and brain fog is virtually non existent. Another thing, that I had also noticed is I don’t struggle at all with brain fog like I used to.
In our current area, we have had a low barometric pressure that has pushed me to my limits, and after 5 consecutive days of it being below 30.0inHg it has literally made my shoulders burn and my neck ache, given me a migraine, and made my right eye twitch like crazy. Which has given me reason to research, and report more articles, on things to help with those crazy symptoms. Today, I started L-Serine as well to start seeing if those symptoms do improve, as I found, that this essential amino acid is actually missing or depleted in urine samples of Fibromyalgia patients.
You can consume L-Serine in some foods, but unfortunately most of the nuts, and soybeans and things that contain this amino acid are on lists of foods that I naturally avoid just due to the Mast Cell Activation. One thing, I have learned and decided is that I altered most of my eating habits to navigate around triggering certain symptoms, and although I can imbibe from time to time, I’m not going to continue to push myself when I can just abstain and continue the eating that I have been doing and keep the level of homeostasis that makes my body comfortable. I highly suggest you take that frame of mind as well.
What I have learned is that L-Serine is given to Dementia, Alzheimer’s, and Parkinson’s patients for memory and brain boost. It also has neuroprotective effects as well, along with a host of other benefits, and I’m all for neuroregeneration where I can find it. Restoring and repairing your cells, and neurons are very beneficial for the human body, and I do all I can to restore my brain when possible. L_Serine also has many other benefits so I will give you the link to the research article that I had done. Fibromyalgia/CFS Sufferers: Improving Sleep and Brain Function
Right now my current regiment: 3 Methylfolate, 2 Methylated B-Complex, 4 L-Serine, 1 Cetirizine, 2 Famotidine, in the A.M. then 3 Methylfolate, 2 Methylated B-Complex at lunch, and again at dinner.
My sleep is regulated already just by methylating but I’ll be curious to know whatever changes I see with the added L-Serine. Stay tuned!!!
When I hit a plateau, I search for the next step in treatment to improve. So that’s what I have been up to.
My focus and mental clarity are spot on, with the simple stuff, like taking forskolin, and Rutin, along with my antihistamines. However, I have a tendency to keep looking even when things are good, in case I missed something, then when it goes to plateau, I dig for more!
Everywhere I go, I start discussing illness in forums and groups, you get varying levels of acceptance. What I mean by that is, there are patients that accept their illnesses and want to “live with them” for the rest of their lives, and then there’s the patients constantly at “unrest”, basically not comfortable with being sick, that’s me. I’m not comfortable knowing that I have to live like this the rest of my life. I ACCEPT the fact that there is possibility I may have to, but it will never stop me from continuing to fight against it. After all, as the world turns, every day there is new science. Something new coming to the forefront. This is a revolutionary time in science and medicine.
This was a photo of myself right before I started the MTHFR journey.
Recently when studying histamine intolerance, I discovered a list of medications and things that can exacerbate histamine intolerance, and then I discovered the caveat. Even with the use of all the antihistamines I was taking and my great success with it, they BLOCK the histamines from attaching to the appropriate receptors so that you do not get symptoms. However, it does not degrade the histamine build up in your body. Which means then the histamines float around and find a new place to attach themselves to, leading to new or different symptoms.
I’m diving into that research as I go, however there had been a turn of events in my life, that turned me to studying MTHFR gene expressions, and how your body can’t methylate if you have certain genetic “SNIPS” as they refer to them. I haven’t done the testing, but I jumped on the bandwagon anyway, starting to treat myself “blindly” as is always my method since I started searching for my own health. I’m treating myself so far with Methyl folate and Vitamin B complex and Glutathione.
In one month, I no longer have to take all the antihistamines. Nothing. I have no pain, no arthritic pain, no fibromyalgia pain, and I am at full brain faculty first thing when I wake up. No longer do I sit with my caffeine for two hours waiting for my brain to clear, I’m crisp as a piece of paper first thing in the morning. I can now eat peanut butter again after 17 years, I’m pretty stoked about that. Now it doesn’t mean that I can’t have overactive histamine responses, I’m actually built to, but my body is now breaking down a great deal of histamine on its own through this methylation journey so that I’m not toxic, but if I overexpose myself, I do find myself reaching for my Cetirizine. So far, it’s only occurred twice, and only one pill for an entire day.
In our region currently, we have high tree pollen concentrations, and the farmers are out spraying, plowing and working the fields. That had put me into a migraine yesterday out of the blue, but I literally overexposed myself to more histamine than my body knew what to do with.
***NOTE: the next few links shared for Newsbreak is an affiliate link that the author can make a commission from. I appreciate the support, if you do decide to sign up!***
In my free time, I am now writing for NEWSBREAK….an app that gives you up to date information in your local area. When I’m not working on my book, I figured if I’m going to do the research to help myself, I might as well help others, so here I am. Sharing what I learn as I go, as far as fibromyalgia, Mast Cell Activation, and IBS, along with various other discoveries, and giving local information reports on barometric pressure and allergy reports in my local area.
If you feel that you would like to become a contributor or writer for your local area, it is a legitimate way to make passive income when your body is restricted in movement. I highly suggest you look into it. Just follow the link here to become a writer…. CREATOR REFERRAL.
Funny story, I came across an article that I wish I had found a few years ago. I actually wish that it had existed when I first got sick 6 plus years ago. It would have made a hell of a difference in my life.
When massive bloating happens along with a 15 pound weight gain in a week…..MCAS may be a cause. Picture Cred:Pixabay“When a patient reports massive bloating accompanied by a 15-pound weight gain in a week, or that they can only eat a very restricted diet because they have instant horrible reactions to foods, or are experiencing weird neurological symptoms, or that they have become ultra-sensitive to a wide variety of stimuli, I immediately wonder if MCAS is at play. For some patients, the recognition and treatment of this condition have made a big difference in terms of quick symptom relief.” stated the Psychology Today website in 2019.
I remember that conversation with my Kidney Doctor, she was the only physician who tackled this complex case head on, and back in 2016/2017 Mast Cell Activation was rarely even discussed, and still hardly recognized as a condition. My condition perplexed all my physicians. If ONLY we knew then, what we know now, I may have not degraded quickly and almost lost my life. However, as I was kindly reminded last night again, I guess I never gave up the fight or gave in, I never stopped searching for answers or doing research, or using my body as a guinea pig. I was either going to get better or die. Those were my only options, and I CHOSE LIFE.
But to read this, reminds me of countless doctors that tried to get me to believe I was in a psychosomatic condition, that it was all in my head, when it was REAL.
When patients consult their primary care doctor with many seemingly random dramatic complaints affecting unrelated organ symptoms, which often feature prominent psychiatric symptoms, they are often thought to be suffering from a psychosomatic condition and told “its all in your head.” They may be sent home with a prescription for an antidepressant or anti-anxiety medication, which not only is experienced as invalidating but does not address the root cause of their symptoms.” stated the Psychology Today website .
I chose not to buy what those physicians were selling. It wasn’t in my head, and I had to trust myself on that. I chose not to be invalidated. I felt defeated several times, but never did I invalidate myself in my head or resign to believing this is just the way it was going to be. Super bummed yes, but never to the point of being willing just to give up. I sought advice, and information as much as I could hold in my head for short bouts of reading.
ALLERGICTO YOURBULLSHIT 
