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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Today I needed to give you an update to my guinea pig status. So even though I started the L-Serine I wasn’t feeling all the love with it, all the time. I was getting pretty much a dosage of what felt like taking an NSAID for a few short hours. So, I decided to dig deep into my arsenal of vitamins and dig out the Melatonin.
Recently I had did an article for Newsbreak, explaining the benefits of many different vitamin supplements. One article in particular I decided to do was on Bone pain and Melatonin. Let me tell you, my osteoarthritis is my knees and the joints in my hands have hurt for DAYS…and even when I pulled out my TENS unit to use on my shoulders and the muscle pain, I still wasn’t getting the bone pain relief and it’s been a struggle to sleep.
Even when the kids were much younger and it was suggested I try Melatonin for my ADHD child, I tried taking a 10mg tablet just to see the effects for myself and never really paid attention to the fact of what it did then, even though it didn’t make me want to sleep at all. However last night, I took the 50mg dose, I swallowed five of those little pills. Let me tell you, I haven’t felt that kind of completely relaxed state in my joints or muscles in so long, it felt like I sank deep into a pillow of cotton candy, I was floating… my body was completely in homeostasis. No muscle or joint pain whatsoever as I let sleep take over. I laid there and let it set in. I was still half awake and half asleep, but I achieved that analgesic effect I have not had since one of my major surgeries.
So this morning, with my morning vitamins, I went ahead and took 10 mg of Melatonin. Just to see if it would help or assist in that same feeling, because after a shower, my shoulders hurt again. My joints aren’t agitated yet. So far, not really the same feeling as last night, but I do feel “relaxed”. My joints and hands sure don’t hurt as much, so there is something to assisting with bone pain, and I’m good with that. I hate that ache I get when it feels like “it’s going to rain” and then it perpetuates for days. So I’ll accept that. In the meantime, I’ll take the L-Serine for the shoulder/muscle pain and keep at 10 mg doses during the day for the joints. I believe I’m going to like those results. A little relief is better than no relief.
I’ll be very honest though; it’d be nice to have all these supplements in just a fraction of the pills I swallow. When mainly my breakfast seems to be supplements, until I get hungry again around 10. If you know you know. I’d rather swallow a bazillion supplements if I have to rather than a bunch of medications that I have to navigate through side effects from. Happy Monday!
***UPDATE: when dosing melatonin, do it only AS needed for pain, so far I’m a week in, I have found myself only using them when I need them most, especially the higher dose at night.***
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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.
On this day, July 5, 2019, I changed my mind. I had changed my mind about a lot of things. The pain I was in, the depression I was suffering, the fact that I may lose my life entirely to a handful of diseases that were shutting my body down at such a young age. Things that normally “old people” suffered was going to destroy me before I even hit 50 years old. I had a laundry list of ailments. Those ailments may never go away but I decided the time I have left on this earth after years of fighting for answers and a diagnosis, I would change my trajectory.
“Depressive symptoms significantly impact the quality of life and prognosis of fibromyalgia patients. Therefore, the development of novel management approaches is crucial. Researchers and clinicians in the fields of immunology and psychiatry should conduct future studies with larger sample sizes to provide more robust evidence on the efficacy of current approaches in addressing depressive symptoms in people with fibromyalgia.” states National Library of Medicine website.
Somedays I wake up just fine, other days I’m in pain worse than the day before, but I wrote a promise to myself, my family and my friends and posted it for all to see. I have not looked back from that moment. Now I’m here being able to journal, record, and research and share my findings of the very illnesses that brought me to the brink of death. I encourage you to also find strength in yourself as you read my personal promise that I had written to myself and loved ones four years ago.
MY PROMISE TO FIBROMYALGIA
My brain says, “I can’t”… but I did it anyway.
My body groaned and ached… but I did it anyway.
Then it started tremoring… and I still did it anyway.
The day after, my brain says, “I’m hurt, so I’ll hurt you!”… but I got up out of bed anyway.
My body says “you hurt me, so I’ll hurt you!”… yet I’m up and moving and doing things anyway!
How can a person endure so much pain, and still do it anyway?
Because my heart says, “You have to enjoy as much of what’s left of this precious life as you can, so do it anyway!”
And so here I am. My life has changed, my world has changed. I may have to take naps in between, I may have to take meds to do it, I may have to do everything in short little bursts…..but no matter how I get it done, I’m going to do it anyway!
Because my heart is untouched, and I’m going to love this life anyway.
There’s been a lot happening in my life that doesn’t happen to be anything about my chronic illnesses, however they directly have an effect on my wellness. Remember, that just because you are doing everything possible to control your illnesses, the outside world and uncontrollable influences can send you into a flare. I’m really allergic to stress, even emotional stress. How can I tell?
I have this superhuman ability to gain like 5 to 10 lbs. overnight, which my kidney specialist told me one time was absolutely impossible. No one can eat or drink that much in one day for that to just appear. No doctor had an answer. However, here I was being this fabulous super growing and shrinking woman depending on what was going on in my life. Never did we realize at that point in time, it was directly correlating with the stress that I was under. Yet here I am, rocking it, even when my body was in a peaceful state as far as illness the day before.
So, I’m going to share with you some wisdom, that has seemed to come to me over the past few years. It took a group of my family elders and myself along with an example that shortly followed that brought me to this outright wisdom.
In Parenthood and Life, “It is okay to be human, but it’s always best to be a GOOD human.”
It takes nothing to be a Good Human to Yourself. Picture Credit: Engin_Akyurt/Pixabay
There’s been many different times I’ve asked myself over my lifetime, why certain people just choose to be a bad human. Then you wonder what kind of people would raise such a human. I am naturally a curious person and a people watcher. I even studied a bit of psychology when I was young in high school prepping for college, along with any and every child development course I could and even though I didn’t follow through with any type of degree, it certainly helped me in some pretty tight spots myself.
You can meet some of the most insanely nice people and then there are just inherently bad humans, ones that steal, lie, cheat and or abuse others. However, you meet their families and parents and question “How is that even possible?” No matter the upbringing, humans are responsible and should be accountable for their own actions, and sometimes they just aren’t, and refuse to.
It’s going to directly affect you in one way or another, but you still have the choice to still be a Good Human, and act accordingly if someone does something to you that hurts you. You have control on how you react to certain situations. You do not have to bow down to their tactics, walk their path, you have the ability as a human to walk away. Even good humans, still make mistakes, choose the wrong path inadvertently, but eventually they find their way back on the right path. It takes time and it takes patience for them to catch back up, but everyone has to make their own path, and that’s okay. Like I said, it’s okay to be human.
You personally, for your well-being (and sometimes health), have to be willing to allow yourself the patience and kindness to remove yourself from that situation. You have to remember “I am human too; I have offered my help, my love, and my advice, that’s all I have to help a fellow human. I can only maintain the things that are within my control.” Whether it’s a family member, or just another human friend, sometimes you need space, and that’s okay. As a Good Human, you also have to be a GOOD HUMAN TO YOURSELF AS WELL.
Let peace reside in your heart as much as possible, to reach the best possible feeling of well-being whether you are chronically ill or not. Love and Guide where you can and forgive the ones that choose differently because it’s out of your control. –Wellness wishes from your Author
ALLERGICTO YOURBULLSHIT 
