#mcas #mastcelldisease #mastcellactivationdisorder #mastcell #mastcellactivation #mastcellactivationsyndrome #mastcellactivation #mastcelltumor #mastcells #histamineintolerance #histaminefriendly #chonicillness #migrainesupport #anxietyrelief #mentalhealth #mentalhealthrecovery #panicattack #panicdisorder #manicpanic #manicdepression #lowmoodsupport #sean #lowmood #lowmoodreason #unexplained chronicillness #vitamind #lovechronicles2018❤️❤️❤️❤️❤️❤️ #vitaminsandminerals101 #vitaminc
🎧 Have you checked out my podcast collaboration with POTScast? It’s called Mast Cell Matters, and we dive deep into the fascinating world of mast cells! With a practical approach, I aim to empower both doctors and patients in managing MCAS effectively. From symptoms to testing, diagnosis to treatment, challenges to practical strategies, and even exploring common co-occurring conditions like POTS, hypermobility spectrum disorders, ME/CFS, autoimmunity, and GI dysmotility. Plus, I’ll keep you updated with the latest research findings and clinical pearls! 🌟 Head over to the 🔗 LINK IN BIO 🔗 to watch all episodes. These episodes are a monthly feature of The POTScast, presented by Standing Up to POTS, a non-profit organization dedicated to improving the lives of individuals with POTS and related chronic illnesses. 🤝💙
My job is to take care of myself and try to get healthy...' 👍👍 . . . d - 📸 Via 📷: Unknown, tag to credit! - Tag someone who needs to see this💙 - 👉𝖄𝖔𝖚 𝖈𝖆𝖓 𝖔𝖗𝖉𝖊𝖗 𝖎𝖙 𝖔𝖓 𝖙𝖍𝖊 𝖑𝖎𝖓𝖐 𝖒𝖞 𝖍𝖔𝖒𝖊 𝖕𝖆𝖌𝖊🛍️ - - - - #neurodivergent #startrek #potssyndrome #crps #chronicpain #posturalorthostatictachycardiasyndrome #eds #disabled #wheelchair #dizziness #potsie #migraineawareness #chronicillnesslife #chronicfatigueawareness #mecfsawareness #dystoniaawarenessmonth #mastcellactivationdisorder #complexregionalpainsyndrome #orthostatichypotension #syncope #potswarrior #neurocardiogenicsyncope #spooniehumor #makenoiseforturquoise #babewithamobilityaid #dysautonomiawarrior
Inactive ingredients (excipients) are common causes of medication intolerances and allergic reactions. Physicians who treat mast cell activation syndrome and their patients know that inactive ingredients (including medications to treat mast cell activation syndrome) can trigger an immune reaction. The U.S. National Library of Medicine’s DalilyMed is a database of excipients in drugs that can be referenced before prescribing or whenever someone has an adverse reaction to a medication. However, there have been inconsistencies in DailyMed. The authors of this new paper compared the excipient reporting of 50 commonly prescribed medications with the product labeling provided by the manufacturer to the FDA. They found inconsistencies in inactive ingredients in 39% of the medications examined. Common inactive ingredients are food dye and color (FD&C), magnesium stearate, titanium dioxide, corn starch, silicon dioxide, microcrystalline cellulose, lactose, and gelatin. Inactive ingredients make up 70% of the bulk of medication, which can significantly contribute to immune reactivity. Often, sensitive patients and people with mast cell activation syndrome require compounded medications so that hypoallergenic inactive ingredients can be used. Link in bio to publication: (https://pubmed.ncbi.nlm.nih.gov/38563879/) Link in bio to read about mast cell activation syndrome: (https://drtoddmaderis.com/mast-cell-activation-syndrome) #spoonie #spooniewarrior #spooniecommunity #spooniesupport #spoonies #chronicillness #chronicillnessandme #chronicillnesswarriors #spooniestrong #mcas #mastcellawareness #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mastcelldisease #mastcellactivation #mastcells #mcaswarrior #eosinophilicesophagitis #lymedisease #histamineintolerance #ebv #epsteinbarrvirus #epsteinbarrfighter #epsteinbarr #lyme #lymedisease #lymewarrior #chroniclymedisease #chroniclyme
Continuing #rosaceaawarenessmonth with a repost from @mebykatie. According to recent study findings, mast cells appear to play an intricate role in the pathophysiology of rosacea and could serve as potential targets for future therapies. Mast cells are the first line of immune system cells that interact with environmental allergens and antigens and are involved in other immune-related conditions like asthma, eczema, and seasonal allergies. When they detect an allergen, mast cells release histamine, which expands the blood vessels and can make the surrounding skin itchy, red, and/or swollen. Histamine is an immune signaling protein that causes allergies and swelling but has many other effects. For example, histamine regulates stomach acid, ovulation, and libido, which is why estrogen increases libido, and antihistamines decrease it. Histamine is also a stimulating neurotransmitter that can cause anxiety and insomnia. We now know that rosacea patients have higher levels of mast cells and, therefore, histamine. Histamines come from 3 primary sources: + Mast cells make them in response to allergens or irritants + Foods that naturally have histamines in them + Gut bacteria and yeasts that produce histamine When your body has more histamine than it can break down and remove, symptoms like red, itchy, or swollen skin, sneezing, watery eyes, diarrhea, rosacea, etc., can develop. Inside mast cells, these granules act as warehouses for a variety of inflammatory agents in your body, including histamine, heparin, a variety of cytokines, chondroitin sulfate, and neutral proteases. These substances are released when the mast cell degranulates—essentially, the granules open their doors to release what they hold within. When mast cells become increasingly triggered, you can find that you’ve become intolerant to histamines or have developed a condition called Mast Cell Activation Syndrome (MCAS). Mast cell activation and histamine can play a role in premenstrual syndrome (PMS) and premenstrual dysphoric disorder (PMDD).
It’s a good thing I didn’t listen to them for two years that nothing was wrong to be found with my weight, muscle issues, and pain levels. I kept pushing and asking for further testing but no one thought to check my vitamin c levels with my severely limited mcas diet. I had mentioned malnutrition so many times yet it wasn’t done. You want to know why EDS diagnosis is important even if there’s no cure?! This is why. My annual Eds appt is where my doctor checked vitamin c levels as part of their new protocol. Getting vitamin c in my system now has me getting some tone back! My upper arms aren’t as loose or flabby. My bum has gained some needed shake to it and I have a little bit of a firm belly pooch. Im still fighting to get a vitamin c infusion and praying that the years of that limited diet didn’t now leave me with irreversible scary damage throughout my entire body. Im grieving what was missed, frustrated with what neglect I’m currently facing with the healthcare system, fighting anxiety every moment, and utilizing every tool I can from the natural and Holy Spirit to get through it. Excuse my sink and the soap dripping please. I ran out of spoons while cleaning floors today. If armpit hair offends you, that’s your problem. If you think this post is inappropriate in any way, refer to end of last sentence. #chronicillnesswarrior #potssyndrome #moldillness #providerinducedtrauma #medicalptsd #malnutrition #millenial #vonwillebrands #reynaudssyndrome #mastcellactivationdisorder #americanhealthcareisbroken #insurancedelays #hemophiliatreatmentcenter #disabilityadvocate #autism #etsysellersofinstagram #etsyseller #disabledartist #crochet #ehlersdanlossyndrome
Our bodies have the ability and capacity to heal on its own known as innate intelligence. The sole purpose is to keep you alive and protect and defend you as required. Your cells know to heal and it may take time. Toxins from the environment, negative news, negative people and an unhealthy lifestyle damage our cells. Mast cells are a type of white blood cell that is found in tissues and organs. They are involved in allergic reactions, inflammatory responses, and other functions. Mast cells produce histamine, heparin, and cytokines which help combat inflammation. Histamine is a compound stored in specific immune cells, including mast cells and basophils. The body releases the histamine to protect the body during an inflammatory or immune response to allergens. This is a normal part of a healthy, balanced immune system. Seasonal allergies, cough, cold, allergies to food triggers histamine to release in the body, Our problem begins when there is dysfunction or deficiency in the enzymes that break down histamine Headache, tachycardia, urticaria, pruritus, diarrhea, hypotension, food allergy , flushing, itching, brain fog, digestive problem, fatigue, hormone imbalance, migraine and hives all are correlated to histamine regulation and lack of Dao enzyme. To combat this we need to reduce high histamine foods for a while, high array of antioxidants and nutrients required. Listen to your body begin the journey of healing and wellness. #funtionalnutritionst #WellnessCube #hormonesbalance #chronicfatigue #chronicinflammation #mastcellactivationdisorder #histamine #cleaneatingchallenge
While the symptoms of Histamine Intolerance (HIT) may mimic allergic reactions, HIT is not a classical food allergy. Rather, research suggests that HIT is mediated by a deficiency in levels and/or activity of the Diamine Oxidase enzyme. Check our website to learn more about the differences! #omnediem #histaminedigest #histamineintolerancediet #histaminefree #lowhistamine #lowhistaminediet #glutenfree #healthyfood #mcas #dietabajaenhistamina #foodintolerance #mastcellactivationsyndrome #histamin #histaminosisalimentaria #mastcellactivationdisorder #healthylifestyle #ibs #intoleranciaalahistamina #leakygut #guthealthmatters
I remember working with a practitioner years ago when I was starting my MCAS recovery and she asked me, "have you ever grieved the body you had before you got sick?" I was so hyper focused on physical healing, on figuring this nightmare out, on feeling "normal" again, that I hadn't really stopped to think about what my body went through, what I lost, and how I really felt about it. When you have a chronic illness - whatever it is - it's not something you deal with for a few weeks or months and move on from. It changes you and how you move in the world. And it can really take you out of your life and affect your work, your finances, and your relationships. So it's ok to feel angry and sad around the things you can't eat, the places you can't go, the things you can't do, and the life you thought you would have. Not only is it ok - it's a crucial part of healing. Because when you acknowledge and move through those feelings, you shift into a state of acceptance and create space for healing to come in. And I've found that more often than not, that's when people start to move forward and make progress. 🙏❤️ #mcas #mastcells #mastcellactivationdisorder #mastcellactivationsyndome #histamineintolerance #mastcellactivationsyndrome #chronicillnesswarrior #chronicillness
✨Today was a good day. I’ll take it!🕯️ ✨I spent the day making all kinds of creations of mine over at @apothecaryrising & I fully enjoyed myself! It feels good to be able to slowly create beautiful things for people in my own time. I honestly just love to make healing & spiritual things already, it’s only natural for me to want to share it with others. As a healer, I take myself very seriously. Being a Certified Aromatherapist, Certified Herbalist, Spiritual Advisor, & Reiki Practitioner makes me feel so good about myself & more confident in what I like to do. I’m always learning something, as I take many online courses to keep myself accountable & prepared!✨ ✨Creating for others has definitely been something that has brought a lot of joy into my little heart!🥰 It just feels nice to share what I already do at home for myself, because it really is quite lovely how Mother Nature provides us with all that we need, as long as we look close enough.✨ ✨I’m just so grateful that my body decided that it is time to cooperate! It’s been a long painful journey over the last month, so it is great to be back to doing what I love most! As long as my body continues to let me do this, I will keep on keepin’ on!✨ WHAT IS SOMETHING YOU DO THAT IS CREATIVE? 💘 -Ally . #chronicillness #stillgrowing #movingforward #oregon #chronicpain #pain #eds #ehlersdanlossyndrome #pots #dysautonomia #mcad #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #mentalillness #adhd #bpd #ptsd #siezures #anxiety #medicalptsd #spoonie #zebra #zebrastrong
‼️HISTAMINE SYMPTOMS & EATING MORE‼️ In these slides, learn about: ✅histamine & metabolic rate ✅is this relevant to you? ✅increasing your metabolism ✅reverse diet ✅considerations ✅follow @symptomreversalformula for more information on improving or reversing chronic symptoms and conditions #chronicillness #chronicfatigue #chronicpain #chronicpainwarrior #chronicdisease #chronicdiseases #healthcoach #healthcoaches #autoimmune #autoimmunedisease #histamine #mcas #mastcellactivationdisorder #mastcell #mastcelldisease #gut #guthealth #guthealing #guthealingfood #thyroid #thyroidhealing #thyroidproblems #thyroidweightloss #thyroidhealth #paleo #paleodiet #paleolifestyle #paleofriendly #ibs #ibsdiet
✨”The way you speak to yourself matters”.✨ ~Always try to treat yourself with kindness & be gentle on yourself.~ 💘💘💘💘💘💘💘💘💘 . #chronicillness #stillgrowing #movingforward #oregon #chronicpain #pain #eds #ehlersdanlossyndrome #pots #dysautonomia #mcad #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #mentalillness #adhd #bpd #ptsd #siezures #anxiety #medicalptsd #spoonie #zebra #zebrastrong
🔔𝑹𝑬𝑴𝑰𝑵𝑫𝑬𝑹:🔔When you visit our office, we kindly ask that you 𝐧𝐨𝐭 wear any perfumes, body sprays, etc. to be courteous to our MCAS patients. (MCAS) Mast cell activation syndrome is a condition where the allergic system goes haywire. This occurs in many patients with EDS, POTS, and Long COVID. Individuals with MCAS are prone to unpredictable rashes, hives, or skin sensitivities. Mast cells release histamine and other chemicals that can affect a person’s immune system. MCAS can be hard to diagnose. There are blood and urine tests, but these are frequently normal. The symptoms of MCAS can often be brought under control through the use of antihistamines, mast cell stabilizers, and other medications. Dr. David Saperstein worked with a group of mast cell activation specialists, in an effort led by Dr. Lawrence Afrin to propose new diagnostic criteria to update a Diagnosis Journal first published on January 22, 2014. This journal is called Diagnosis of Mast Cell Activation Syndrome: a Global “Consensus-2”. It is a must-read for all neurologists. Check it out now at the LINK IN BIO. #complexneurology #mastcellactivation #mcas #mastcellactivationsyndrome #mastcellactivation #mastcellactivationdisorder #mastcellactivationdisorderawareness #eds #ehlersdanlossyndrome #ehlersdanlos #posturalorthostatictachycardiasyndrome #posturalorthostatictachycardia #posturalorthostatictachycardiasyndromeawareness #allegies #severeallergicreaction #neurologist #acceptingnewpatients #phoenix #autoimmuneawareness #autoimmune #eds #edsawareness #pots #potssyndrome #ehlersdanlos #arizona
💌 NEW INSPIRING INTERVIEW 💌 🌟 Meet Lola! 🌟 after experiencing anaphylactic shock in 2022 with no known allergies, Lola believes she has MCAS (Mast cell activation syndrome), but has been unable to seek treatment or diagnosis within the NHS due to its lack of recognition screening from the absence of NICE guidelines. She hopes that by sharing her story with a note of Hope will help raise much needed awareness! Search anoteofhope.com 🔎 or click the link in our bio/stories to read Immy’s full interview! • #mcas #pots #chronicillness #spoonie #invisibleillness #chronicpain #mastcellactivationsyndrome #zebrastrong #fibromyalgia #spoonielife #mastcellactivationdisorder #butyoudontlooksick #chronicillnesswarrior #chronicallyill #histamineintolerance #mcad #allergy #allergyawareness #anaphylaxisawareness
According to recent study findings, mast cells appear to play an intricate role in the pathophysiology of rosacea and could serve as potential targets for future therapies. Mast cells are the first line of immune system cells that interact with environmental allergens and antigens and are involved in other immune-related conditions like asthma, eczema, and seasonal allergies. When they detect an allergen, mast cells release histamine, which expands the blood vessels and can make the surrounding skin itchy, red, and/or swollen. Histamine is an immune signaling protein that causes allergies and swelling but has many other effects. For example, histamine regulates stomach acid, ovulation, and libido, which is why estrogen increases libido, and antihistamines decrease it. Histamine is also a stimulating neurotransmitter that can cause anxiety and insomnia. We now know that rosacea patients have higher levels of mast cells and, therefore, histamine. Histamines come from 3 primary sources: + Mast cells make them in response to allergens or irritants + Foods that naturally have histamines in them + Gut bacteria and yeasts that produce histamine When your body has more histamine than it can break down and remove, symptoms like red, itchy, or swollen skin, sneezing, watery eyes, diarrhea, rosacea, etc., can develop. Inside mast cells, these granules act as warehouses for a variety of inflammatory agents in your body, including histamine, heparin, a variety of cytokines, chondroitin sulfate, and neutral proteases. These substances are released when the mast cell degranulates—essentially, the granules open their doors to release what they hold within. When mast cells become increasingly triggered, you can find that you’ve become intolerant to histamines or have developed a condition called Mast Cell Activation Syndrome (MCAS). Mast cell activation and histamine can play a role in premenstrual syndrome (PMS) and premenstrual dysphoric disorder (PMDD). #mcas #histamine #rosacea #PMS #mastcellactivationdisorder #nutritioncoach #rosaceaskincare #Estrogen
My happy place🌲🌲🌲🌲🌲 For as long as I can remember I have always seeked solace amongst nature, especially within the trees of a forest. It is where my soul feels most at home, where I can feel the warmth fill me up even on the coldest of days. ✨Do you have a spot like this? Somewhere you can go to & know it is always there, ready to embrace you?✨ 🤍, Ally . #nature #natureistheremedy #chronicillness #stillgrowing #movingforward #oregon #chronicpain #pain #eds #ehlersdanlossyndrome #pots #dysautonomia #mcad #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #mentalillness #adhd #bpd #ptsd #siezures #anxiety #medicalptsd #spoonie #zebra #zebrastrong
In recent weeks, I have seen multiple patients with urinary frequency symptoms. The symptoms affect daily activities, including nighttime waking. Prior testing for urinary tract infections was negative, but all patients were prescribed antibiotics because the doctors were uncertain of the cause. Antibiotics might temporarily help in these cases, but symptoms often persist. It is not widely known that mast cell activation syndrome (MCAS) can contribute to interstitial cystitis (IC). IC is a condition of bladder wall inflammation that causes urinary tract-like symptoms of urinary frequency and bladder pressure/pain when it is full. Mast cells can cause vasodilation and attract inflammatory cells to the bladder wall, contributing to these symptoms. Not all cases of IC are caused by mast cell activation syndrome, but it should be considered in people with a history of other symptoms consistent with MCAS. Read about the connection between MCAS and IC by clicking the link in bio: (https://pubmed.ncbi.nlm.nih.gov/8284844/) Link in bio to read more about MCAS: (https://drtoddmaderis.com/mast-cell-activation-syndrome) #spoonie #spooniewarrior #spooniecommunity #spooniesupport #spoonies #chronicillness #chronicillnessandme #chronicillnesswarriors #spooniestrong #mcas #mastcellawareness #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mastcelldisease #mastcellactivation #mastcells #mcaswarrior #lymedisease #histamineintolerance #ebv #epsteinbarrvirus #epsteinbarrfighter #epsteinbarr #lyme #lymedisease #lymewarrior #chroniclymedisease #chroniclyme #interstitialcystitis
✨“May your hands be so busy catching blessings that they don’t have the capacity to hold onto things that no longer serve you!”✨ 🤍🙏🏼🤍 -Ally (PS: I found a song that someone wrote about my town!) . #blessings #blessedbe #witchlife #disabledwitch #chronicillness #stillgrowing #movingforward #oregon #chronicpain #pain #eds #ehlersdanlossyndrome #pots #dysautonomia #mcad #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #mentalillness #adhd #bpd #ptsd #siezures #anxiety #medicalptsd #spoonie #zebra #zebrastrong
6 months of empties = 6 more months behind me #progress . Battling Bartonellosis: https://www.battlingbartonellosis.com/ #bartonellosis #chronicillness #chronicpain #vectorbornediseases #onehealth #bartonella #mastcellactivationdisorder #zoonosis #mcas #zoonoticdiseases #mastcellactivationsyndrome #catscratchfever #connectivetissuedisorder #autoimmunedisease #notonemorevet #vetmed #veterinarian #biomedicalscience #veterinaryawareness #lymedisease #bacteremia #godisgood
It’s MCAS flare season 🫠 Spring has sprung, which means MCAS flare season is here. Spring is the worst time of year for my Mast Cell Activation Syndrome - with more severe reactions, new symptoms and allergies… it really is flare season 🌷 So I’m wearing my ‘Faulty Mast Cells Club’ hoodie to bring some much needed dark humour to the situation 🥲 [ID: Three photos with three women, one wearing a white t-shirt, the other a grey marl sweatshirt and the next a white hoodie. They all have an illustrated piece of artwork on them, a blue mast cell with the words “faulty mast cells club” in rainbow.] #mcas #mcad #mastcellactivationsyndrome #mastcellactivationdisorder #ehlersdanlossyndrome #edsawareness #hypermobilityspectrumdisorder #zebrastrong #gastroparesis #dysautonomiaawareness
So far, I see a huge difference in my symptoms when i stick to keto and super low carb. I threw in the towel this weekend for a few days and today I am exhausted and have hives. That is some solid motivation to keep going. #mastcellactivationsyndrome #mastcellactivationdisorder
Seeking a diagnosis for MCAS can be challenging, especially when many doctors are unfamiliar with Mast Cell Activation Syndrome. A common question we receive is, “How can we effectively present our MCAS case to ensure that doctors understand and listen?” Click the LINK IN BIO to download my ten tips to help you make the most out of your doctor’s appointment when being evaluated for Mast Cell Activation Syndrome. #mcas #pots #chronicillness #eds #ehlersdanlossyndrome #dysautonomia #spoonie #invisibleillness #chronicpain #mastcellactivationsyndrome #zebrastrong #gastroparesis #potssyndrome #chronicfatigue #fibromyalgia #ehlersdanlos #spoonielife #posturalorthostatictachycardiasyndrome #heds #mastcellactivationdisorder #edsawareness #butyoudontlooksick #hypermobility #chronicillnesswarrior
Leaky gut syndrome is characterized by inflammation in the intestinal barrier that allows bacteria in the intestine to enter the bloodstream. Once in the bloodstream, the bacteria trigger an immune response, forming immune complexes. Immune complexes can deposit into joints, contributing to arthritis. Reactive, rheumatoid, and Lyme arthritis are associated with circulating immune complexes. Research has shown that repairing a leaky gut in the pre-phase of arthritis can inhibit the development of arthritis. This new review article highlights the association of inflammatory bowel diseases, leaky gut syndrome, and immune complexes that lead to arthritis. I routinely test patients for leaky gut syndrome with stool and blood tests. Effective treatment can help reduce systemic inflammation and immune system dysregulation if the results are positive. There is an interesting connection between microbial dysbiosis, mast cell activation and leaky gut syndrome. Mast cells migrate to bacteria and fungal overgrowth in the small intestine and release their mediators. Mast cell mediators contribute to inflammation in the intestinal barrier, leading to leaky gut syndrome. Click the link in my bio for the study: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10987687/) You can read more about leaky gut syndrome and mast cell activation syndrome by clicking the link in my bio: (https://drtoddmaderis.com/leaky-gut-syndrome) (https://drtoddmaderis.com/mast-cell-activation-syndrome) #spoonie #spooniewarrior #spooniecommunity #spooniesupport #spoonies #chronicillness #chronicillnessandme #chronicillnesswarriors #spooniestrong #mcas #mastcellawareness #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mastcelldisease #mastcellactivation #mastcells #mcaswarrior #lymedisease #histamineintolerance #lyme #lymedisease #lymewarrior #chroniclymedisease #chroniclyme #IBS #ibslife #dysbiosis #leakyguthealing #leakygutsyndrome
It has been a month since my doctor cleared me to go back to work with restrictions!! I can’t even begin to explain how meaningful it has been for me to contribute my talents to something that matters to so many patients’ care. It also helps keep my brain and body working, something I wasn’t sure I’d be able to do again just a few months ago. Don’t get me wrong, it is hard, always has been. I am thankful to now know why my body struggles and how I can best support it to try and achieve great things anyways (shoutout all of the connective tissue disorder specialists; i owe everything to them). It still sits heavy that achieving great things comes at a higher cost for me, oftentimes meaning symptom flare and recovery periods. Everything is different, just from precautions and restrictions alone, and realistically every night brings pain and fatigue and the subsequent tending to those on top of the many things I do just for symptom management throughout the day. So. many. medications. The reality of life is often painful and grueling though, I’m just honored to be witness to some of the greatest moments in life when I can, they’re just that much sweeter. Despite everything, this has been a period of deep gratitude, for every small moment of hope, for every lent hand and hug, for the perseverance I carry with me. Now on to PT (that is after waiting until May 2 because shortages of physicians, i was actually supposed to start a couple weeks ago), specifically Muldowney/CHOP protocols, to hopefully feel better and even get this brace off for low risk activities 🤞 #disabled #livingwithdisability #medicallycomplex #chronicillness #complexpatient #complexillness #raredisease #raredisorder #rareillness #connectivetissuedisorder #ehlersdanlos #dysautonomia #mastcellactivationdisorder #spinalmanifestationsctd #cci #aai #craniocervicalinstability #atlantoaxialinstability #cervicalinstability #tarlovcystdisease #LSTV #csfleak #misdiagnosis #misseddiagnosis #ptsd #medicalptsd #chronicpain #acutepain #cpp #spoonie
Yesterday I had a #mcas flare up, when I started feeling anxious while packing for surgery. I hadn’t eaten anything so the trigger didn’t come from there. I was fine while running errands with my friend Kat (@katdkatdkatd). I was fine while we tidied up the main level of my house when we got home. I wasn’t fine when we went upstairs to sort through my piles for Germany and officially start packing. They say the body keeps score and my nervous system certainly goes haywire whenever anything medical or surgery related enters the chat. Thanks Kat for your help getting through it all in one day. I’m also so grateful to my kiddos who played a big role in my symptoms calming down pretty much immediately after they got home from school. Being with them will forever be my happy place. Based on the 3:30 pm pic…I think my nervous system agrees. #mastcellactivationdisorder #mcas #lipedema #inflammation #chronicillness #chronicpain #invisibledisabilities
What a difference a few days and a strong dose of steroids does 🙃 . . . . . . #mastcellactivationdisorder #mcas #allergicreaction #steroids #spoonie #chronicillness #clearskin #nofilter
What is Mast Cell Activation Syndrome (MCAS)? Mast cells are important part of your body’s immune system. In normal circumstances, mast cells play an important protective role, helping wounds heal and defending the body from external threats. When triggered, they release over 200 different kinds of chemical compounds called mediators, including histamines, prostaglandins, and cytokines. MCAS is a condition that occurs when the mast cells are overactive or easily triggered, releasing inappropriate amounts of these mediators. The body ends up in a state of continual mast cell hyperactivation, causing many serious physical symptoms that can appear to be unrelated, such as bloating, skin rashes, abdominal pain, nausea, chronic aches and pains, headaches, allergic reactions, or hypersensitivity to drugs or medications. Blair Medical Group has collected current research on MCAS in our latest white paper. Learn more about mast cells, and how they affect important body systems when they are overactive. The paper also includes information on how medical practitioners diagnose this disease, and their recommendations to help relieve symptoms. Download the MCAS white paper https://bit.ly/3JeMNPT #mastcellactivationsyndrome #MCAS #mastcellactivationdisorder #mastcell #betacaryophyllene #BCP #BCPlus #blairmedicalgroup #abledocsapothecary
Gotta laugh.... #humor #fallingapartbutstilllaughing #zebra #bodyisfallingapart #eds #ehlersdanlossyndrome #chiari #tetheredcordsyndrome #mastcellactivationdisorder #spooniehumor
New Recipe @ Sin & Scandal - One-Minute Mug Cake https://sinscandal.wordpress.com/2024/04/12/one-minute-mug-cake/ #lowhistamine #lowhistaminediet #lowhistaminerecipes #lowhistaminefoods #mastcelldisease #mcas #singapore #LongCovid #COVID19 #mastcellactivationsyndrome #allergies #mastcelldisease #mastcellactivationdisorder #mcas #covid #histamineintolerance #hives #asthma #ibs #eds #pots #chronicillness #invisibleillness #gastroparesis #Myalgicencephalomyelitis #fibromyalgia #chronicfatigue #singapore #multiplesclerosis #smallfiberneuropathy #endometriosis #vasculitis #asthma
Chronic pain can be so all consuming sometimes that I can only focus on pain pain pain. It feels as though there is pain flowing through my veins & even my hair hurts. 🫠 I am currently working through one of my worst flare ups of pain. Whenever I aggravate this particular injury (all of my injuries become chronic issues. Thanks EDS!) it is the worst feeling ever. I’m not okay.. but it’s okay to not be okay. I am still so very grateful for the air in my lungs, the shining sun, & my beating heart. 🙏🏼Even though I can’t hardly do a thing, I am still worthy of so many things & so are you. 💘 #chronicpain #painflare #EDS #ehlersdanlossyndrome #chronicillness #chronicallyill #chronicallychill #chronicillness #stillgrowing #movingforward #oregon #pain #pots #dysautonomia #mcad #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #mentalillness #adhd #bpd #ptsd #siezures #anxiety #medicalptsd #spoonie #zebra #zebrastrong
✨️💃❤️🔥 Survived & thrived at Texas Eclipse Festival 2024 ❤️🔥💃✨️
One of the hardest parts of living with a chronic illness is grieving who you used to be before you got ill. I can remember a time when I had a lot less pain, a lot more energy and had the ability to do whatever I wanted without thinking about my health. But I think what’s hardest for me is grieving about the expectations I had about my life. As a kid I always had such high expectations for my future, because kids dream. I would imagine how successful I would be and how perfect life would be. But I have learned that although life didn’t go as planned, that version of myself that I envisioned isn’t an any better version of me. Sure, I wish I wasn’t ill, but what I know is that how much I work, how successful I am, and how much money I have doesn’t define me. What defines me is how I treat others and the positive impact I can make on someone’s life. So it’s okay to have moments to grieve and even think “what if” but don’t let it take over your mind. Let the past be the past and focus our energy on the present and future. Cre: @how.u.feeling . . . - 📸 Via @how.u.feeling - Tag someone who needs to see this💙 - 👉𝙂𝙚𝙩 𝙜𝙞𝙛𝙩𝙨 𝙗𝙮 𝙩𝙝𝙚 𝙡𝙞𝙣𝙠 𝙖𝙩𝙩𝙖𝙘𝙝𝙚𝙙 𝙞𝙣 𝙩𝙝𝙚 𝙗𝙞𝙤❤️ - - - - #disability #ehlersdanlossyndrome #neurodivergent #startrek #potssyndrome #crps #chronicpain #posturalorthostatictachycardiasyndrome #eds #disabled #wheelchair #dizziness #potsie #vasovagalsyncope #dysautonomiainternational #chronicfatigueawareness #mecfsawareness #dystoniaawarenessmonth #mastcellactivationdisorder #complexregionalpainsyndrome #orthostatichypotension #syncope #potswarrior #neurocardiogenicsyncope #spooniehumor #makenoiseforturquoise
Mast cells are immune cells located in tissues and organs that interact with the outside world. They are present in high concentrations in the skin, respiratory, and gastrointestinal tracts. When mast cells are triggered by an antigen, they release inflammatory mediators that cause symptoms. Mold and the mycotoxins it produces are known to trigger mast cell activation and subsequent symptoms. This is a case report of a 63-year-old man who presented to a gastroenterologist with a four-year history of frequent attacks of nausea, vomiting, and abdominal pain. He was a property manager, and the attacks would occur when he visited homes with water damage. He was hospitalized on four occasions, and CT scans showed abnormal findings in his small and large intestines (continued in comments). Have you experienced digestive symptoms from mold exposure or mast cell activation syndrome (MCAS), or both? Link to study in bio: (https://www.ulopenaccess.com/ulpages/fulltextULMHS?ArticleID=ULMHS20240201009) Links in bio to read about Mold-related illness and MCAS: (https://drtoddmaderis.com/symptoms-of-mold-exposure) (https://drtoddmaderis.com/mast-cell-activation-syndrome) #spoonie #spooniewarrior #spooniecommunity #spooniesupport #spoonies #chronicillness #chronicillnessandme #chronicillnesswarriors #spooniestrong #mcas #mastcellawareness #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mastcelldisease #mastcellactivation #mastcells #mcaswarrior #lymedisease #histamineintolerance #lyme #lymedisease #lymewarrior #chroniclymedisease #chroniclyme #moldillnessrecovery #mold #moldwarrior #moldtoxicityrecovery #moldillnessisreal #molddisease
💚🚀🌈✨️ Camp Spark Master Boag at Texas Eclipse Festival 2024 ✨️🌈🚀💚 #iloveyall #festivalfam
6 T H S T O M A V E R S A R Y🔴 - Today marks six years since I had my stoma surgery and Stewie was formed! For the most part, Stewie has changed my life for the better - prior to having a stoma my life consisted of having to irrigate daily, doing countless enemas, having frequent bowel obstructions and having perforations etc which were all absolutely horrendous😭 - Whilst I feel so fortunate that Stewie has taken away most of those things and has improved my quality of life on the whole, life with a stoma is far from perfect and more awareness about them needs to be raised 💩 - Happy 6th Stomaversary Stewie, thank you for saving my life in more ways than one 🫶🏼
Mast Cell kicked my ass today 😪 #mastcellactivationdisorder #allergicreaction #allergy #epipen #rash #swollen #wtfhappened
The gut is the source of a lot of histamine issues, and I often show this picture when educating clients. 💡 TOP: when the gut microbiome is balanced, and there is no GI inflammation, the mast cells are behaving. 💡 BOTTOM: when the gut microbiome is imbalanced and the gut is inflamed, the mast cells release histamine and other inflammatory mediators, which inflames the vagus nerve (the red river on the bottom), which is in close proximity. In order to decrease histamine and mast cell activity, you have to balance the gut and decrease GI inflammation!
The biggest lessons you will learn today … 1. Doctors don’t have all the answers. 2. You need to trust yourself. I spent 20+ years being chronically ill and misdiagnosed. ⁃ In 1998, I was diagnosed with Celiac Disease ⁃ In 2008, I was diagnosed with Multiple Sclerosis. By 2019, I hit my breaking point. - I could barely eat - Was covered in itchy burning rashes - And going into anaphylaxis constantly (Among numerous other symptoms not accounted for by MS or Celiac disease.) I felt like every part of me had died. I didn’t even recognize myself in the mirror. (See the pic to the left - who is that?) 🤷🏻♀️ Then a miracle happened. I met a doctor who listened: - He gave me a bone marrow biopsy - A diagnosis of Hypereosinophilic Syndrome - And put me on the right medication called Fasenra (My bone marrow was producing too many eosinophils and attacking all of my organs.) That’s why I was so sick. Plus, I had a neuro disease and MCAD which I knew about. Finally, I had a FULL proper diagnosis. After years of being gaslit by docs all that resilience and being my own advocate paid off. I am sharing this story for anyone out there who might be struggling with mystery illness or incomplete diagnosis. DO NOT give up hope! Believe in yourself and keep advocating for yourself. And remember … Just because the doctors don’t know what’s wrong with you does not mean you are crazy. P.S. Before you write about Keto, Vegan, or any other diet STOP. I did every cleanse, holistic treatment, and was free of EVERYTHING for well over a decade- it didn’t matter. Some things are beyond fasting and allergen-free diets. Even though, I’m still very much on an allergen-free organic diet to this day.
When it comes to helping your mast cells find some balance, addressing stress is a crucial part! Here are some ways you can manage stress to soothe your mast cells: 🧘♀️ Try out stress management techniques like deep breathing, meditation, or mindfulness. They work wonders in reducing stress levels and promoting relaxation. 🏋️♀️ Get some regular exercise! Physical activity releases those feel-good endorphins that help relieve stress. Aim for moderate exercise to keep stress in check. 🥦 Don’t forget about a healthy diet! Opt for fresh, whole, and nutrient-dense foods. Modern-day diets can leave you feeling overstimulated and malnourished, so let’s nourish those mast cells and immune system! 💤 Prioritize getting adequate sleep! Lack of sleep can crank up your stress levels. Establishing a bedtime routine and sticking to a consistent sleep schedule can really help. 👥 Remember the power of social support! We all crave love and connection, so don’t hesitate to reach out to loved ones and seek support when needed. 💆♀️ Explore mind-body therapies like acupuncture, neurofeedback, or aromatherapy. They can work wonders in alleviating stress and helping you relax. For an added dose of relaxation, you can also try wearable devices like Apollo Neuro. 💊 Consider stress-busting supplements! Stress affects both your body and mind, so including supplements like Cortisol Essentials and Adrenal Boost can help your body physically bounce back and combat stress. Remember, managing stress is a crucial step in treating any mast-cell-related condition. So let’s give your mast cells the stability they need by keeping those stress levels in check! 💪
Brain tumor (Meningioma) Update: Hello chronic illness warriors! Now in the 6 month after CyberKnife stereotactic radiosurgery for the “Merovingian” aka my Meningioma, Brain Tumor. Post radiation brain swelling treatment continues. Chronic (or major) illness takeaways: The First Rule of MRI Club! #chronicillness #chronicillnesswarrior #chronicillnessawareness #mcas #pots #blackheathmatters #potssyndrome #ehlersdanlos #dysautonomia #cpap #centralsleepapnea #hypopnea #brainaneurysmsurvivor #mastcellactivationsyndrome #mastcellactivationdisorder #meningiomabraintumor #meningioma #brainaneurysmawareness #braintumor #brainaneurysm #cyberknife #brainradiation #radiationtherapy #blackhealth #blackgirlmagic #blackwomensheatlh #blackgirl #disability #blackdisabledlivesmatter #blackfacebook
Even my meds are pink🎀🌸💗Wholesome Sunday dump⭐️ Btw to anyone who struggles with MCAS/food allergies I highly recommend @airup 🫶🏻 Being restricted to water, tea and milk isn’t much fun but at least with my Air Up I can my water tastes like different drinks! Been a real game changer for me💖 You can get so many different flavours but my personal fav is the cherry one🍒🌸 #chronicillness #illness #chronic #allergicreaction #pots #mcas #potsawareness #fibromyalgia #allergy #fibro #feedingtube #disability #gastroparesis #invisibleillness #mastcellactivationsyndrome #mastcellactivationdisorder #sunlightallergy #posturalorthostatictachycardiasyndrome #ehlerdanlos #eds #ehlersdanlossyndrome #airup #scoliosis #pink
ALLERGY UPDATE- Ok so long story short I’m now allergic to atmospheric rapeseed instead of it just being oral/in my food + feed - I’m reacting to the scent of it and BOY THATS ROUGH when it’s in pretty much every field around your house 🥲 Everytime I’m leaving the house I end up with severe nausea, headaches, tight chest, tight throat, pins + needles in my tongue, chronic fatigue, dizziness, and feel so out of it/like I’m in a daze/zoned out but can’t zone back in. Anyways, due to my symptoms my doctors are really worrying about me going into full anaphylaxis, so upped my Fexofenadine to the MAX dosage which is flaring up my POTS so badly:( but they said the risk of lowering the dosage is more severe than staying on the max🥲 I h and my face/skin is flaring again and we don’t know if it’s the rapeseed or the increased dosage of the Fexofenadine butttt either way it sucks. Although not as bad as my usual flares (touch wood) so taking that as a win! Joy. So basically been told it’s a waiting game for anaphylaxis as they’re expecting me to go into it at some point considering my symptoms right now, which is apparently pre-ana🤌 Any tips or advice is welcome!💗 #chronicillness #illness #chronic #allergicreaction #pots #mcas #potsawareness #fibromyalgia #allergy #fibro #feedingtube #disability #gastroparesis #invisibleillness #mastcellactivationsyndrome #mastcellactivationdisorder #sunlightallergy #posturalorthostatictachycardiasyndrome #ehlerdanlos #eds #ehlersdanlossyndrome #spoonie #scoliosis
i aint been the same, try so hard to hide the pain
It's Thursday, and I'm barely hanging on. Seems like every day is another hit. My daughter's eye script literally changed overnight. She woke up, and her right was staying inward. Multiple appointments and ordered her new script. The lenses can't be rushed, so she has to wait 2 to three 3 weeks until they come in. She can't drive. She can barely read(it hurts to) she's in college. I keep reassuring they have to make accommodations for you. And I will drive you where you need to go, no worries, love! My youngest had been sick for the past couple of days, fever, vomiting, body chills. I wish I could take it away. I'm flaring from overdoing! #chroncillness #chronicpain #chronicmama #eyeissues #zebramama #eds #ehlersdanlossyndrome #waitingonglasses #flaring #flareinprogress #zebrarare #mastcellactivationdisorder #tetheredcordsyndrome #chiarimalformation #sickkiddo #wishicouldtakeitaway #goaheadandswing #tryingmybestv #mamashurting #mykidsaremyworld
Welcome to My Place of Worship 🙏 #iveseenthegods #drumnbass
Do you pee a lot, or feels like you have a small bladder? Struggle with period pain and cramps? Endometriosis? Fibroids? Got pain with urination? Tomorrow, a new month, a new focus here on Histamine Haven. We're diving in to symptoms that show up in the Urinary System, and the Reproductive System in all genders. . Think: ✨ urinary frequency ✨ infertility ✨ fibroids ✨ PMDD ✨ PMS ✨ menstrual cramps ✨ pain associated with Interstitial Cystitis ✨ Endometriosis ✨ UTI's + more... . Make sure to 'like' this post if you're curious to learn more. Or hit the three dots in the top right of the image, and click 'Add to favorites'. This will help us get in your feed so you can learn some more throughout the month of April! . 🧠 Do you know if the symptoms and issues you are experiencing may have a histamine piece to the picture? 😔 Always check with your medical team first to rule out other potential reasons. But what if they can't pinpoint what's going on? What if histamine / mast cells could be playing a part in the scenario for you? 🤓 If you're curious to learn more about the mast cell piece to the picture of symptoms associated with the urinary or reproductive systems, then you're in the right place. . Want to learn more? Join our newsletter! Perfect place to start. Comment 'newsletter' and we'll send you the link directly to join us. . Or 'like' this post, 'add to favorites' or bookmark it so that you'll see more of our posts come through on your feed. . #histamineintolerance #mcas #histamine #histaminefree #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #urinary #reproductive
Super Low Histamine Quail Egg Salad sans Mayo https://sinscandal.wordpress.com/2024/03/27/quail-egg-salad-sans-mayo/ #lowhistamine #lowhistaminediet #lowhistaminerecipes #lowhistaminefoods #mastcelldisease #mcas #singapore #LongCovid #COVID19 #mastcellactivationsyndrome #allergies #mastcelldisease #mastcellactivationdisorder #mcas #covid #histamineintolerance #hives #asthma #ibs #eds #pots #chronicillness #invisibleillness #gastroparesis #Myalgicencephalomyelitis #fibromyalgia #chronicfatigue #singapore #multiplesclerosis #smallfiberneuropathy #endometriosis #vasculitis #lowhistamine #lowhistaminediet #recipes
I haven’t posted as often but if you actively see my story you’d know I’m at a pots clinic for the week getting a bunch of autonomic testing! It’s rough, exhausting and scary but I’m getting through in the hopes for answers and a better treatment plan! Chandler has been doing amazing and always amazes me when we go to new hospitals, he sees me having weird machines all over me but does so well! I don’t know what I’d do without him 🥰 ' . . . Repost from: @sdit.chandler_doodle ... - 📸 Via @sdit.chandler_doodle - Tag someone who needs to see this💙 - 👉𝙂𝙚𝙩 𝙜𝙞𝙛𝙩𝙨 𝙗𝙮 𝙩𝙝𝙚 𝙡𝙞𝙣𝙠 𝙖𝙩𝙩𝙖𝙘𝙝𝙚𝙙 𝙞𝙣 𝙩𝙝𝙚 𝙗𝙞𝙤❤️ - - - - #neurodivergent #startrek #potssyndrome #crps #chronicpain #posturalorthostatictachycardiasyndrome #eds #disabled #wheelchair #dizziness #potsie #migraineawareness #chronicillnesslife #dysautonomiainternational #chronicfatigueawareness #mecfsawareness #dystoniaawarenessmonth #mastcellactivationdisorder #complexregionalpainsyndrome #orthostatichypotension #syncope #potswarrior #neurocardiogenicsyncope #spooniehumor #makenoiseforturquoise #babewithamobilityaid
NEW PODCAST with @rungalife :: Listen now as we delve into the complexities of Lyme disease, mast cell activation syndrome (MCAS), and the impact of marketing on diet recommendations. Learn how doctors tackle undiagnosed symptoms and uncover underlying causes, while exploring the importance of prioritizing protein and reducing sugar for optimal health. ✨ LINK IN BIO ✨ #mcas #pots #chronicillness #eds #ehlersdanlossyndrome #dysautonomia #spoonie #invisibleillness #chronicpain #mastcellactivationsyndrome #zebrastrong #gastroparesis #potssyndrome #chronicfatigue #fibromyalgia #ehlersdanlos #spoonielife #posturalorthostatictachycardiasyndrome #heds #mastcellactivationdisorder #edsawareness #butyoudontlooksick #hypermobility #chronicillnesswarrior #chronicallyill #histamineintolerance #lymedisease #mcad #dysautonomiaawareness #anxiety
We're heading into allergy season, and if you react to environmental allergens like pollen or ragweed, you may also cross-react to certain foods that have similar proteins/structures - the immune system reacts to them the same way. So, if you're having allergies on a really high-pollen day, and then you eat certain foods that are cross-reactive with pollen, it will drive up your symptoms even more. Click 👆 for a list of cross-reactive foods. #mastcellactivation #mastcellactivationsyndrome #mastcells #mcas #mastcellactivationdisorder #mastcell #histamineintolerance #histamineintoleranz #histamineintolerant (list adapted from the Insitute of Functional Medicine)
Asking for myself 🙃 . . . #disabled #disabledlife #chronicillness #chronicpain #spoonieproblems #spoonie #spoonielife #mastcellactivationsyndrome #mastcellactivationdisorder #posturalorthostatictachycardiasyndrome #chronicfatigue #pots #dysautonomia #IC #spooniesupport #mcas #mcad #sfn #neuropathy #smallfiberneuropathy #autonomicdysfunction #autonomicneuropathy #autoimmunedisease #scoliosis #spoonieproblems #hsd #disability #invisibleillness #invisibledisability #youdontlooksick
My disabled placard brings all the ableists to the yard! #youmad #disabled #disabledmama #disablitiesarenotalwaysvisible #ableismexists #dontbeanableist #getoffmyshit #eds #sijiontshattered #chiarimalformation #tetheredcordsyndrome #cci #aai # #mastcellactivationdisorder #pots #mayturnersyndrome #smallfiberneuropathy #spoonie #chronicmama #youdonthavetoproveanything #disabledplacard #disabledparking
There is a strong association between mast cell activation syndrome (MCAS) and hypermobile spectrum disorders(HSD), such as hypermobile Ehlers-Danlos Syndrome (hEDS). People with MCAS and hEDS often experience digestive symptoms. In this newly published article, gastroenterologists discuss hypermobile disorders’ role in nutritional deficiency. Swipe to see more information about digestive health in hEDS/HSD. Comment below if you have a hypermobile disorder and experience digestive or gastrointestinal symptoms. Source (link in bio): https://pubmed.ncbi.nlm.nih.gov/38393310/ #spoonie #spooniewarrior #spooniecommunity #spooniesupport #spoonies #chronicillness #chronicillnessandme #chronicillnesswarriors #spooniestrong #mcas #mastcellawareness #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mastcelldisease #mastcellactivation #mastcells #mcaswarrior #lymedisease #histamineintolerance #lyme #lymedisease #lymewarrior #chroniclymedisease #chroniclyme #ehlersdanlossyndromeawareness #ehlersdanloslife #ehlersdanlossyndrome #ehlersdanlos #hypermobility
New delicious low histamine recipe uploaded at my food & recipe blog https://sinscandal.wordpress.com/2024/03/26/not-a-chapati-not-yet-a-prata # #LongCovid #COVID19 #mastcellactivationsyndrome #allergies #mastcelldisease #mastcellactivationdisorder #mcas #covid #histamineintolerance #hives #asthma #ibs #eds #pots #chronicillness #invisibleillness #gastroparesis #Myalgicencephalomyelitis #fibromyalgia #chronicfatigue #singapore #multiplesclerosis #smallfiberneuropathy #endometriosis #vasculitis #lowhistamine #lowhistaminediet #recipe #recipes
It's Easter Week, and I thought I'd share a great duo for your diffuser & also let you know that I'm praying for your #healingjourney 🙏🏻💛 . . . @katynicholemusic #ylangylang #bergamot #diffuserblend #katynichole #ptsdwarrior #traumatherapy #traumarelease #traumaawareness #allergylife #allergymom #CSID #MCAS #mastcellactivationdisorder #mastcellactivationsyndrome #sucroseintolerance #aromatherapyoils #aromatherapy #posttraumaticgrowth #prayforme #prayingmom #prayingwoman #essentialoilsforthewin #essentialoilsrock #essentialoilsforhealing #essentialoilrecipes #diffuseoils #easter2024 #resurrectionday #resurrected
I’VE NEVER FELT SO SICK BEFORE Almost 4 weeks ago I shared through my stories that I had pain in my bladder and that I probably suffered from bladder pain syndrome. The pain was terrible, little did I know that this was just my first symptom and many more would follow. I spent a week and a half in bed 24/7, only dragging myself out of bed to go to the toilet. I thought I was used to something by now, I get sick so regularly, but this was really on a different level...! I have had pain or discomfort in every part of my body in that week and a half: - Bladder pain: not being able to stand up straight because of the pain, feeling continuous pressure to urinate, not being able to urinate and feeling a burning sensation throughout time. - Problems with temperature regulation of my body and this without fever: one moment I was very hot and suffered from sweat outbreaks, the next moment I felt incredibly cold and I had muscle spasms over my body that lasted at least 2 hours. - Insomnia: I couldn’t fall asleep for 6 nights, only dozing off. - Migraine: I had a terrible headache and could not tolerate any kind of light and sound. - No appetite: I also didn’t eat for 6 days because I wasn’t hungry, whenever I thought about food I felt really sick. I only drank water and chamomile tea. - No taste: everything I drank and later ate had no taste or a strange taste. - A tongue of leather - Diarrhea - Heartburn, especially at night. - Palpitations - Dizziness - Shortness of breath - Dry throat - Muscle pain - Extreme fatigue After not sleeping for 6 nights, I sent a message to my allergist asking if there is any form of antihistamine which helped me fall asleep better? I was prescribed Ketotifen and it did its job, I finally fell asleep again! Not that deep yet and for that long, but at least I slept again! I am still recovering from this, probably caused by a virus that made my mast cells go crazy. Fortunately, things are getting better day by day and this gives me hope again. For this reason I have been offline for so long, now at least you know why, 🤎
Previous research by the authors of this new publication demonstrated a connection between chemical intolerance and mast cell activation syndrome (MCAS). In the 2021 study, the researchers used the validated screening questionnaire Quick Environmental Exposure and Sensitivity Inventory (QEESI) to determine a correlation between MCAS and chemical intolerance. In this current observational study, the authors sent the QEESI (https://tiltresearch.org/self-assessment/ ) to over 10,000 adults and inquired about whether or not their children had been diagnosed with autism or ADHD. The responses were evaluated for data quality, and 4691 responses were included. Swipe to see results. Source (link in bio): https://www.mdpi.com/2039-4713/14/1/22 Read more about MCAS (link in bio): https://drtoddmaderis.com/mast-cell-activation-syndrome #spoonie #spooniewarrior #spooniecommunity #spooniesupport #spoonies #chronicillness #chronicillnessandme #chronicillnesswarriors #spooniestrong #mcas #mastcellawareness #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mastcelldisease #mastcellactivation #mastcells #mcaswarrior #lymedisease #histamineintolerance #autism #adhd #chemicalintolerance #chroniclyme #autismawareness #autismsupport #autismadvocate #adhdawareness #adhdsupport
I do not talk about chronic illness to play victim... I talk about it to raise awareness.'🙌🙌 . . . d - 📸 Via 📷: Unknown, tag to credit! - Tag someone who needs to see this💙 - 👉𝖄𝖔𝖚 𝖈𝖆𝖓 𝖔𝖗𝖉𝖊𝖗 𝖎𝖙 𝖔𝖓 𝖙𝖍𝖊 𝖑𝖎𝖓𝖐 𝖒𝖞 𝖍𝖔𝖒𝖊 𝖕𝖆𝖌𝖊🛍️ - - - - #ehlersdanlossyndrome #neurodivergent #startrek #potssyndrome #crps #chronicpain #posturalorthostatictachycardiasyndrome #eds #disabled #wheelchair #dizziness #potsie #migraineawareness #vasovagalsyncope #dysautonomiainternational #chronicfatigueawareness #mecfsawareness #dystoniaawarenessmonth #mastcellactivationdisorder #complexregionalpainsyndrome #orthostatichypotension #syncope #potswarrior #neurocardiogenicsyncope #spooniehumor #makenoiseforturquoise
Second visit to the Disney100 Exhibition because there's no such thing as too much Disney ✌🏼 - We had such a lovely afternoon, and Disney and the magic of it is such a 'pick-me-up' for me and has been a big part of my life since I was very young. It gets me through the bad days, whether it be watching a Disney film or looking forwards to a Disney trip, it never fails to cheer me up😍 - My health has continued to be really unstable this past month with numerous problems rearing their ugly heads, and my blood sugars still dropping to dangerously low levels multiple times every day and throughout the night, meaning we're getting very little sleep and, as a result, are exhausted😴 - I've got some gruelling tests coming up in the next week or so, but I feel so lucky to have been able to make some lovely memories today with my fave human which will get me through the tough times ahead✨🏰🐭🐻
Because of surgery, I was late changing my central line dressing. It was unusually sore this time around. * The song “Titanium”, specifically the line about being bulletproof, plays in my head as I reflect on what this chronic health journey entails; lots of dodging bullets, watch-and-waits, close calls, near-misses, and the like. But stand here long enough and you cannot dodge every one. You’ll get hit; hard? frequently? fatally? There is no way of knowing. So you continue. * * * * * * * * * * * * * * * * * #tpn #ivnutrition #gjtube #ivig #centralline #hickmanline #dysautonomia #potssyndrome #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #zebrastrong #connectivetissuedisorder #chronicillness #chronicpain #fibromyalgia #ivhydration #spoonielife #spoonie #motilitydisorder #autoimmunedisorder #autoimmunediseasewarrior #autoimmunedisease #gastroparesis #gastroparesisawareness #smallfiberneuropathy #smallfiberpolyneuropathy #butyoudontlooksick #mastcellactivationdisorder #invisibleillness #medicalzebra
Cre: @chroniconfessions Not a day goes by… ... - 📸 Via @chroniconfessions - Tag someone who needs to see this💙 - Follow 👉 @dysautonomiafact for more content💓🌼🥰 ======================= Follow 👉 @dysautonomiafact for more content💓🌼🥰 - - - - #sickandtiredofbeingsickandtired #chronicfatiguesyndrome #invisibledisability #spoonie #chronicmigraine #spoonies #mentalhealthawareness #fibromyalgiaawareness #chronicfatigue #fibromyalgiawarrior #migraine #mecfs #chronicallyill #vasovagalsyncope #dysautonomiainternational #chronicfatigueawareness #mecfsawareness #dystoniaawarenessmonth #mastcellactivationdisorder #complexregionalpainsyndrome #orthostatichypotension #syncope #potswarrior #neurocardiogenicsyncope #spooniehumor #makenoiseforturquoise
Cre: @chroniconfessions Not a day goes by… ... - 📸 Via @chroniconfessions - Tag someone who needs to see this💙 - Follow 👉 @dysautonomiafact for more content💓🌼🥰 ======================= Follow 👉 @dysautonomiafact for more content💓🌼🥰 - - - - #sickandtiredofbeingsickandtired #chronicfatiguesyndrome #invisibledisability #spoonie #chronicmigraine #spoonies #mentalhealthawareness #fibromyalgiaawareness #chronicfatigue #fibromyalgiawarrior #migraine #mecfs #chronicallyill #vasovagalsyncope #dysautonomiainternational #chronicfatigueawareness #mecfsawareness #dystoniaawarenessmonth #mastcellactivationdisorder #complexregionalpainsyndrome #orthostatichypotension #syncope #potswarrior #neurocardiogenicsyncope #spooniehumor #makenoiseforturquoise
People in my close friends stories will know, but I’ve been having a really rough MCAS flare up recently. There’s been supply issues with a couple of my meds since December and, although we’ve been getting hold of them intermittently, I’ve been snowballing symptoms and not getting the meds consistently enough to settle back on them, leading to 10 anaphylactic reactions in less than 6 weeks. There’s appointments in the works with allergy consultants to get a longer term plan in place, and an interim plan last week off a short course of steroids gave me the longest gap between reactions that I’ve had since this all kicked off (4 days without even having low level histamine reactions and 7 days without anaphylaxis!) but that’s not without side effects, both some rough ones in the short term as well as bringing other issues if that ends up being a longer term plan. For now, I’m escaping hospital with another short course of the same steroids and a letter updating my consultant ahead of my emergency appointment next month (the urgent waitlist was 6 months so I’m grateful they’ve created an out of clinic appointment, even if it is still a few weeks away!). In the meantime I just have to keep on keeping on and deal with these reactions as they come and manage the side effects the best as possible in the meantime. 🤞🏻 #MastCellActivationSyndrome #MCAS #MastCellActivationDisorder #Anaphylaxis #EpiPensSaveLives #BlueToTheSkyOrangeToTheThigh
Are you battling with Mast Cell Activation Syndrome (MCAS) flare-ups? 🤒 You might not always pinpoint what sparks them, but here's a list of usual suspects that could be stirring up trouble for your mast cells. Watch out for these triggers: 🌞 Sun rays & sudden climate shifts 🤧 Pesky allergens like mold & pollen 💊 Certain medicines, including some painkillers & antibiotics 🏃♂️ Physical stressors like exercise or even fatigue 🍷 Foods high in histamine — think fermented goodies & some beverages 😷 Unwanted infections like viruses & bacteria Knowledge is power! Arm yourself by knowing these common triggers and manage your symptoms better. #mcas #pots #chronicillness #eds #ehlersdanlossyndrome #dysautonomia #spoonie #invisibleillness #chronicpain #mastcellactivationsyndrome #zebrastrong #gastroparesis #potssyndrome #chronicfatigue #fibromyalgia #ehlersdanlos #spoonielife #posturalorthostatictachycardiasyndrome #heds #mastcellactivationdisorder #edsawareness #butyoudontlooksick #hypermobility #chronicillnesswarrior #chronicallyill #histamineintolerance #lymedisease #mcad #dysautonomiaawareness #anxiety
I’ve been on a long hard journey especially since COVID. I look forward to sharing all that I have learned about my lipedema inflammation and how I am working to shed the severe inflammation once again. This time I have real answers about the root cause of inflammation from #MastCellActivationDisorder #MCAD #MCAS #VascularEndothelialGrowthFactor #LeakyVeins #ToxicTissue #AbnormalScarTissue #AbnormalAngiogenesis and #Fibrosis. Recently I diagnosed with #HereditaryAlphaTryptasemia which was dormant until #ChronicToxicExposureAtWork and #MTHFR (impairing detox) caused the gradual onset of #SystemicMastocystosis. The perfect storm of leaky gut, leaky blood vessels, trapped toxins, activation of dormant diseases, abnormal fibrogensis and angiogenesis leading to increased hypermobility, painful long bones, joints, muscles, fat and #lipedema. In 2019 a car accident Injury lead to cervical cranial instability; unstable knee, hip and spine; and increased systemic inflammation. In 2020, COVID led to Long COVID, microclotting, and even more systemic inflammation. In 2022, the COVID vax caused chronic Mast Cell Activation and I am now fighting for my life. I have #POTS #ChronicMCAS #CalcifiedBloodVessels #FibrosisEverywhere. My blood vessels around my bones constantly burn. I can’t wear any restrictive clothing. I can’t sit for more than 2 hours. I’m the heaviest I’ve ever been. When I exercise my head feels like it is going to explode and I get an #orthostaticheadache for days. I have cognitive impairments. My short term memory is shot. I can’t multitask. But I’m still not giving up. 💪🏼 #LipedemaWarrior #MastCellDiseaseWarrior #PEMFTherapyforMCAS #PEMFTherapyforLipedema #PEMFTherapyforFibrosis #SoftwaveTherapyForMCAS #SoftwaveTherapyForLipedema #SoftwaveTherapyForFibrosis #UltrasonicCavitationForLipedema #VibrationPlatformForLipedema #PompaProgramForLipedema