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.
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.
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
Funny story, I came across an article that I wish I had found a few years ago. I actually wish that it had existed when I first got sick 6 plus years ago. It would have made a hell of a difference in my life.
When massive bloating happens along with a 15 pound weight gain in a week…..MCAS may be a cause. Picture Cred:Pixabay“When a patient reports massive bloating accompanied by a 15-pound weight gain in a week, or that they can only eat a very restricted diet because they have instant horrible reactions to foods, or are experiencing weird neurological symptoms, or that they have become ultra-sensitive to a wide variety of stimuli, I immediately wonder if MCAS is at play. For some patients, the recognition and treatment of this condition have made a big difference in terms of quick symptom relief.” stated the Psychology Today website in 2019.
I remember that conversation with my Kidney Doctor, she was the only physician who tackled this complex case head on, and back in 2016/2017 Mast Cell Activation was rarely even discussed, and still hardly recognized as a condition. My condition perplexed all my physicians. If ONLY we knew then, what we know now, I may have not degraded quickly and almost lost my life. However, as I was kindly reminded last night again, I guess I never gave up the fight or gave in, I never stopped searching for answers or doing research, or using my body as a guinea pig. I was either going to get better or die. Those were my only options, and I CHOSE LIFE.
But to read this, reminds me of countless doctors that tried to get me to believe I was in a psychosomatic condition, that it was all in my head, when it was REAL.
When patients consult their primary care doctor with many seemingly random dramatic complaints affecting unrelated organ symptoms, which often feature prominent psychiatric symptoms, they are often thought to be suffering from a psychosomatic condition and told “its all in your head.” They may be sent home with a prescription for an antidepressant or anti-anxiety medication, which not only is experienced as invalidating but does not address the root cause of their symptoms.” stated the Psychology Today website .
I chose not to buy what those physicians were selling. It wasn’t in my head, and I had to trust myself on that. I chose not to be invalidated. I felt defeated several times, but never did I invalidate myself in my head or resign to believing this is just the way it was going to be. Super bummed yes, but never to the point of being willing just to give up. I sought advice, and information as much as I could hold in my head for short bouts of reading.
What has worked for me is in immediate flare of a critical reaction, I choose to take a Generation 1 antihistamine which is Diphenhydramine (Benedryl). However, long term use has indicated that it can cause or create dementia/Alzheimer’s or at least exasperates symptoms. I had been using Diphenhydramine for years, because the allergy shots never worked, and I’m allergic to steroids and Prednisone. So I gave that up. I had to do something.
Once I verified exactly what symptoms I was suffering from, and then figured out what receptors I needed to block, and what drugs coordinated with the ones I searched up. What worked for me was H1 and H2 blockers, which was Cetirizine (Zyrtec) and Famotidine (Pepcid AC)
Since I already was diagnosed with Fibromyalgia, and Neuropathy (even my feet were killing me and I wasn’t on them) along with my GI tract flaring, I knew that the only way for me to calm down my whole body was to block my H1 receptors and H2 receptors from antihistamine. My skin was reacting as well by the time I was diagnosed. Showers felt like whole body tattoos all at once, even the water hurt my skin like tiny needles. Each person is different, and each person will have different results and responses.
**Note: I was a guinea pig, and my primary physician was on board. He told me, “a serving suggestion is very literally a suggestion, you can take MORE of a antihistamine than what is suggested, so it took a lot of trying one , and upping the dose. My dosage is 4 times a day. 30 minutes before eating , Morning wake-up, Lunch, Dinner, and then 30 minutes before bed, to account for the histamine dump while I sleep to fight the insomnia and night sweats, when I forget to take them.
**Always check with your primary physician when taking OTC or Prescription medications. They are not pharmacy technicians, but it is important to discuss uses if you are on any other medications as well!**
The confident little man, told me at the tender age of 5.
At that moment, I knew that this child in particular, had no plans anytime soon of behaving himself. He fully intends to leave this earth in a blaze of glory. Recently he ventured out on his own at age 18 and managed to crash and burn within two weeks of leaving the homestead, but we’ve got time, he’s going to one up himself until he hits a wall. In his defense, he warned me years ago. However, I plan to fulfill his final wishes anyway I can. After all, I tell everyone that story, so as to make sure if I am gone, someone will manage to get it done, just for me, so I can laugh from the unearthly plains. (Remember, how I said, I was allergic to stress? Yes, he’s THAT child, and I am owed a slap on his behind on the way out. Haha)
I’ve spent most of my time last week remembering people, mourning a loss of someone near and dear to our family, and reorganizing my room in the process. A few weeks ago, it was a father of a bestie who was diagnosed with Alzheimer’s. This past week, a mother of a different best friend, whom had Dementia.
I honestly wish I had taken a before picture of my bedroom, but alas I didn’t. When I started falling ill, my bedroom became a little bit of a hoard, since 2014 I’ve been collecting many things. When you start to lose mental functionality, and also if you have ADHD or ADD, there is a thing called, OBJECT PERMANENCE. You may notice yourself, or even your children leaving various objects in plain view so you remember you have them so you can use them. Don’t you dare ever put anything in boxes, you’ll forget you have them and then buy more, turning into a mini hoard.
Honestly, I’m grateful for the ability to now, 1) Have the energy and focus to start tackling the “hoard”, 2) Have the ability to recognize now, why I was doing what I was doing., 3) Share this knowledge with you, or your loved ones so they can recognize an issue before it becomes a major problem.
Your loved ones, who would regularly and normally stay fairly well organized and confident in their function, start to show signs of object permanence, starting to leave things in “convenient” places so they don’t “forget” to do things or use things daily. It actually comes on pretty subtle at first. Then, there is obsessive compulsive behaviors as well coupled with the “convenient” storage of items they need daily. It’s an ugly vicious cycle to lose your cognitive function, and the family has to constantly ask themselves, “Why did they do that?” I’m telling you the why. However, don’t you dare touch their system that they have created, because there will be an argument that ensues, or at least a lot of grumbling, because they’ve lost enough cognitive or memory to remember where it was placed, once you take it out of its position to clean the house again. To be honest, they’re going to forget anyway eventually if you know they don’t use it daily, and they definitely won’t remember it at all if it’s placed in a box next to them, it’s in a box, and it is UNSEEN. “Out of sight, out of mind.”
During the process of cleaning and organizing I’ve found a treasure trove of notes that I had written myself, organized my supplements, and took up collection of EVERY SINGLE prescription bottle they had me on during my years of illness. It’s an impressive collection, and I don’t suggest you take modern medicine by the handfuls like this. Yes, there is at least two bottles that are duplicates, but that’s because it’s how it is filled, and a few creams and lotions per prescription are tossed in to balance out the multitudes of drugs my body was consuming. Essentially, I was on at least 10 medications simultaneously at all times.
I came across one of my empty bottles of Naringin as well, and I was reminded of just how far I’ve come from the days of modern medicine to healing myself naturally. Naringin deserves a Grammy or Oscar in my lineup. It’s one of the top supplements that keeps me going. To see the supplement, just follow the link here: https://amzn.to/3JCQakR
“The results of the present study concluded that naringin can effectively improve the cognitive abilities of mice with memory impairment and exert neuroprotective effects. Thus, naringin may be a promising target drug candidate for the treatment of Alzheimer’s disease.”
Meng X, Fu M, Wang S, Chen W, Wang J, Zhang N. Naringin ameliorates memory deficits and exerts neuroprotective effects in a mouse model of Alzheimer’s disease by regulating multiple metabolic pathways. Mol Med Rep. 2021 May;23(5):332. doi: 10.3892/mmr.2021.11971. Epub 2021 Mar 24. PMID: 33760152; PMCID: PMC7974313.
You clicked on this article, so join me in laughing. I’m cracking up at the advertising for Butea Superba…
The fact that advertising for something as awesome as this herb makes me just laugh. To convince people that something is good enough, we have to promise a huge erection. Instead of the fact that it ameliorates (improves) cognition… wrap your mind around that one. It blows me away that erections are more important to our society than our main ECUs (our brains), but then again, you probably didn’t live the demented life like I have.
My focus has solely been the fact that I’m losing family and friends to cognition issues left and right it seems. That there is an epidemic of people that are literally going to leave this earth with Alzheimer’s and Dementia in the near future, but no one is talking about that. After my experience, I’m set out to tell others what I have experienced, and what I have found that helps me. I am an anomaly to science, and even my neurologist says so.
I visited my neurologist post pandemic and hadn’t seen him since 2019. He literally questioned if I was the same patient he had seen before, so I had to SHOW him the photos on my phone, my ID and proof that it was still the same patient he had been treating. He couldn’t believe his eyes, and then encouraged me to “Write that book!” So here I am. Blogging, Researching, and Writing.
“These results indicate that BS (Butea Superba) ameliorates not only cognition dysfunction via normalizing synaptic plasticity-related signaling and facilitating central cholinergic systems but also depression-like behavior via a mechanism differing from that implicated in BS amelioration of cognitive function in OBX animals.”
Mizuki D, Qi Z, Tanaka K, Fujiwara H, Ishikawa T, Higuchi Y, Matsumoto K. Butea superba-induced amelioration of cognitive and emotional deficits in olfactory bulbectomized mice and putative mechanisms underlying its actions. J Pharmacol Sci. 2014;124(4):457-67. doi: 10.1254/jphs.13252fp. Epub 2014 Mar 19. PMID: 24646653.
I’m not a doctor, and I will never claim to be, but after taking it for a day, I feel laser focused. I’m the guinea pig, I’ll continue to do it too. Therefore, you know if something helps you or not. My mission is to heal my brain so that I can get my body back.
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…
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,…
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…
Butea Superba is an herbal supplement that I recently discovered. Let me tell you if you click the link above, you can purchase and partake in the said herb. Throughout my venture of getting better I’ve came across various supplements that have helped me in my journey, some that I continue to take, and some that only helped for a little while, but not for the long term.
I’ve been a on a specific hunt to heal my brain, and improve my cognitive function, knowing that eventually I may actually have to relent to dementia or Alzheimer’s at an early age. I still leave that in the back of my mind. The MRIs don’t lie. I have a lot of black space in there, from the various abuses I sustained over my lifetime in my early years before I turned 28, that basically results in damage. Science has proven, that abuse in many forms is just as damaging to the brain just as much as the many concussions that I have suffered in my lifetime. I can at least count 5 maybe 6 total that I did suffer, that I remember.
My husband is also 18 years my senior. Don’t worry we were well beyond the ages of we didn’t give a shit when we fell in love, and age wasn’t a consideration, and still isn’t today. When it comes to my venture into the world of supplements, he’s been ALL in for choosing this over the millions of doctor appointments and tests that had not been getting me anywhere.
I became essentially my own guinea pig, and I’ve been following a regimen for over a year now, and when I stopped the regimen, I suffered memory loss, cognitive dysfunction, headaches and the like, I recently returned to my regimen before I was confident in finishing the book I was writing and beginning the blog you are now participating in reading.
I very well may be on this supplement train forever, but not without all the research that led me to the supplements I’m on. Remember, I’m allergic to just about everything. I have to carefully find things, that are peanut, shellfish, yeast free and gluten free for the most part. I also have to avoid medications and supplements with ACIDS (lets not forget my bladder disease).
Today, my husband and I have ventured onto the train of Butea Superba, because PubMed has literally published articles, verifying that this tubular root, has the potential to literally be a turning point in Alzheimer’s Disease treatment and prevention. So, sign us up, no questions asked. The various other articles tell you about how it helps erectile dysfunction as well as it being nontoxic to the various patients that were tested, and so on.
With our hereditary backgrounds, we know that it very well be in the cards for us, so cognitive decline is what we are preventing. So, we have chosen this supplement specifically. I’ve done the studying, and I’m not a doctor, but it never hurts to try.
Yes, that black space is not supposed to be there, that’s supposed to be full of white matter.
That’s what one of my physicians told me, literally word for word.
This physician was staring at my x-ray puzzled as to why I looked so swollen and that I literally was full of human excrement, and hot air. Insert the various jokes, of how much I’ve heard that in my lifetime, for one various reason or another. It does NOTHING for your psyche when you are chronically ill, chronically bloated, chronically FULL to the point you can’t eat, sleep, walk, or function.
I wasn’t intending on hearing these words, but that was the most likely explanation, after all, I saw the x-rays myself, and that’s exactly what it looked like to me. Now at this point, we didn’t know I had Mast Cell Activation, we didn’t suspect that my mast cells were swelling my bowels so that they wouldn’t work, but that is exactly what was happening. So, for the first year, and 3 emergency room visits, what do you think they did? Gave me human drain cleaner, I drank more MiraLAX than what was absolutely necessary for a human to do, and WAYYY MORE than a colonoscopy requires.
Eventually when I found a Gastroenterologist that was willing to take my case and LISTEN to me (I did have to fire one.) we identified that all I had managed to do was get an awesome gut infection that required medication that required them to fight with my insurance to cover the $2k plus a pill to get rid of said infection. They managed to get it done, but it wasn’t fun, and it took 3 months to heal the infection. That Gastroenterologist was annoyed that not one PHYSICIAN, ER or otherwise had suggested when I’m consuming massive amounts of human drain cleaner that it would be wise of me to be on a probiotic, it could have prevented all of that mess.
Don’t ask me about the room. I couldn’t bend over to even clean. Felt like the blueberry girl from the Wonka movies.
Talk about a blow to the gut, very literally. I was suffering for nearly an entire year and a half, with no idea what I was fighting. Again, we didn’t know MCAS was even a thing then. However, the characteristic of mast cell is that when something is agitated in the body, it gets inflamed, much like the hives, or a mosquito bite or bee sting.
After we were able to get the bowels calmed down, it’s when we found that my lady parts had already been swollen 7 times the size due to polycystic ovarian syndrome, and Fibroids…and then scheduled to have said dysfunctional items to be removed. I’d only given birth to one child, blessed with helping many others grow, and married into becoming a mother to another child, I was okay at the age of 40 to give up my right to birth. I nearly died just giving birth to the first one, it took me YEARS to even get pregnant the first time, my psyche was already okay to give up that part of me. That’s when we found the bladder issue, my bladder had been crushed, it had created another issue in the process, it’s called Interstitial Cystitis of the bladder. Essentially when it swells because it’s mad, it rips the walls open and basically has an allergic reaction to anything I eat or drink, causing great abdominal pain, heartburn issues and the like.
One hot mess is where I was in life at that time. Couple that with beginning to lose my sanity… I wouldn’t wish what I had gone through at this point on anyone.
This was my live in caretaker, and also cousin. My partner in crime, when he was available to attend appointments with me. Blessed to have him with me every step of this journey.
If you ever wanted an excuse to be allergic to exercise, Mast Cell Activation Syndrome and Fibromyalgia are your friends.
Desperate for answers I employed a friend to follow me to this giant diagnostic hospital for answers. My family physician thought it would be time for me to visit a Rheumatologist. Considering the options that I was running out of, I opted for the closest facility.
Neat fact, I should have opted to be dumped at the front door, because just getting to where we needed to be in that building I wanted to curl up in a ball and die. I do have to say, my friend opted to get me a wheelchair, but I’m a little stubborn about resorting to that when my legs aren’t broken, they just hurt ALOT. By the time we got to the waiting area, I have nothing left in my reserves, exertion of any sort would make me sleep for days. I wanted to cut off my feet they hurt so bad. When I would get overheated, I couldn’t breathe, I’d break out in a weird rash, sweats, EVERYTHING on my body HURT. I was lucky if I wasn’t having Parkinson’s like tremoring, and walking with all the physical pain on top of the random neurological symptoms was HARD. I was 40 at this time, (before my actual dementia diagnosis I believe) and I’m hunched over with a dementia type gait, because my nervous system has had ENOUGH, I’m shuffling around like I’m 80-90 yrs. old like I’d lived my best life already, I’m just getting started!
I got to visit the doctor along with my huge 4″ binder file that was forwarded to them before I even attended the facility. I was sent for random testing, then the Rheumatologist walks in starts poking me, and talking with me, and EVERYTHING she touched hurt. Oh…you have Fibromyalgia. Oh great, I thought to myself. This doctor quickly leaves the room and informs me I’m to see another person at another facility in an hour. “ANOTHER DIAGNOSIS, that people think is a load of total nonsense”, I thought to myself. (I only had a few believers in my small circle of loved ones that I was even ill at all.) I used to be one of those people that didn’t believe Fibromyalgia was a thing. In a few short minutes I was ever so sorry for EVER thinking that way, because when you look at people with chronic illness, sometimes YOU HAVE NO IDEA there’s anything wrong, and now I WAS ONE OF THOSE PATIENTS, talk about eating a HUGE PIECE OF HUMBLE PIE.
Clarification is needed at this moment in time. Apparently when your brain shrinks and you start to have pain issues like I have, your brain is the central (computer) of your nervous system. It runs all of the things, including the nervous system that is all those tiny wires that go all the way to your fingertips, toes, and in your skin. Well, when they get mad…. you’re just done. Just sleep is what my neurologist had told me. The only thing that will make it calm down is to hit the reset button on your personal computer (brain) so it’s time you sleep. Let me tell you, SLEEP was my OTHER hobby already, but the guy isn’t lying. (Note: When I mean sleep, I was taking naps throughout the day, because I had some insane insomnia at night, I was not actually getting a full 8 hours of restful sleep a night and that IS WAY MORE IMPORTANT than napping.) Later on, I would figure out that sleep is a big deal when you are basically experiencing neurological pain and neuroinflammatory processes, but I wouldn’t learn that for a long time later.
Back to the whole big diagnostic hospital event…. they sent me to see the actual REAL NURSE RATCHED in the flesh. At least that’s what my friend and I named her. I sat in front of this woman, as she spoke down to me like I WAS SEEKING MEDS. I had already told her my journey, and shared with her I WAS ALLERGIC to all said NARCOTICS, and ALL I WANT IS MY LIFE BACK, and explained to her, that I NEVER SIT STILL until I got sick. I WANT MY LIFE BACK without the drugs! This woman for real, asked me straight up, “Have you tried YOGA?!” I don’t remember the colorful things that followed but I did sum it up, we are wasting each other’s time and left. I WAS SO ALLERGIC TO HER JABBER, I just wanted to go home.
“People with fibromyalgia experienced significant pain and fatigue in the exercising muscle during recovery from low-intensity and short-duration resistance exercise, with greater pain during concentric contractions.” states the PubMed website.
Observational Study posted about Localized Pain and Fatigue During Recovery From Submaximal Resistance Exercise in People With Fibromyalgia
The stress just made me hurt worse, and I was over the day, and so was my friend to be honest. Obviously, that physician isn’t aware that Mast Cell Activation Syndrome makes you ALLERGIC to exercise and physical exertion. (Little did I know that basically, Fibromyalgia gave you the same symptoms after exertion too.) I guess I feel as though our medical system is flawed because when new illnesses are identified there should be some type of education about it, and there is. Some people receive it, others do not, that goes for both patients and physicians; there’s a disconnect. However, it’s the free will of the physicians you employ on whether or not they choose to continue to educate themselves and indulge in educating you in the illnesses you are diagnosed with. In this particular experience, I received a diagnosis with no education, then sent to Nurse Ratched to ask me if I had tried yoga, with no backstory or education as to why I needed it, or the benefits to it and the diagnosis I had just received a few hours before. I was confused, tired, angry, and in excruciating pain, just to make the trip and the walk into these facilities to see these people.
Remember, physicians can be hired and fired too, and you can get second opinions. Just because you have seen one doesn’t always mean you take their word as the written word of some saint in a book like the Bible. Trust your instincts and will to live!
Looking back on this experience, it was the start of when I began educating myself. In hindsight, I just got so mad that I still knew nothing when I left. Indirectly, it sent me into a domino effect of healing. First, I started reading, that was neurological stimulation even if I read only one paragraph a day, if you know, you know that brain fog is no joke. This in turn exercised my brain just enough to remain in the real world long enough to continue to strive for another few paragraphs the next day, until I was reading solidly again. Second, I did figure out that any type of exercise is better than no exercise, whether its walking in a pool, doing a sauna, just light stretching, or yoga, or simply going grocery shopping it stimulates oxygen in the brain and that was particularly important for my central nervous system. Do I exercise? NO, but I did force myself to remain as active as my body would allow, and even now I still overdo it, and have to sleep for a day or two. Has the pain improved? Absolutely! It doesn’t happen overnight, but out of pure stubbornness you got to start somewhere, right? I did.
ALLERGICTO YOURBULLSHIT 