Working In A Gym Helped Me Changed My Perspective Amanda’s Spoonie Story

I have been a chronic illness warrior since I was 4 years old and now I’m almost 30. It’s been a long road. First, I was diagnosed with Juvenile Rheumatoid Arthritis, which then was complicated by Lyme Disease contracted in my early teens but not diagnosed until a decade later. Finally, in the last 3 years I have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers Danlos Syndrome. Crossing my fingers that’s everything diagnosed!

Watching The Other Kids

Growing up I fought back a lot of bitterness and resentment as I watched the other kids, teens, and twenty-somethings living their lives. I wanted to play sports, go out dancing and drinking, get a job I loved, or at the very least not need crutches and pills to get through my day.

Growing up I fought back a lot of bitterness and resentment as I watched the other kids, teens, and twenty-somethings living their lives.

I spent decades shuffling from doctor to doctor and doing what they said, thinking of my body as a malevolent adversary more with each passing year. 

Changing My Perspective

Three years ago I got a job at a gym during a period of remission. As I learned about fitness and got deep into the strength athlete world I began to shift how I thought of my sick person lifestyle. Surrounded by people who did their PT, stuck to their diets, and took their supplements with religious intensity, I no longer felt alone. Here was a mindset I understood and, although my results didn’t look like an athlete’s, the similarity in lifestyle began to change my perspective.

There was a mindset I understood and, although my results didn't look like an athlete's, the similarity in lifestyle began to change my perspective.

Today, in recovery from one of the worst flares of my life, I balance my time between napping and gym-going. I lift weights and use a cane. I take creatine and also NSAIDs. My diet is dictated by painful digestion and I also count my macros. For the first time in my life I see my body as, at worst, a project I’m working on and, at best, my teammate in life.

The Athlete’s Approach

The athlete’s approach to chronic illness hasn’t solved all my problems. When I’m in pain for days on end I still sink into a stupor of depression. I still hate the choices I make to miss important events with my friends or give up a job I love because of my health. I may never be able to have children or pursue a high-powered successful career. But this new mindset has given me a rope to hold onto in the dark days.

On Instagram I follow a mix of powerlifters and spoonies. I find I have connections to both groups. I write meal plans and teach yoga for athletes and coach spoonies on managing their energy levels in flares and during recovery periods. I get to learn new ways to activate my quads before a squat from a powerlifter and then scroll a bit more for a new way to use turmeric to reduce inflammation from a spoonie. It’s a beautiful meeting of the worlds of sport and sickness and I’m learning to find the balance.

It Is Possible!!

I’m signed up for my first powerlifting meet this fall. I know my numbers are going to be awful and I wont be even slightly competitive in the sport. But I’m doing it. I’m getting up there and doing the thing while still being sick, which is more than my pre-athlete mindset would have even known to dream.

I spent years trying to get better so that I could do things. Now I’m trying out doing things and getting better all at once. Doing things and being chronically ill simultaneously. It’s hard. It’s a daily battle and I slip and I fail and I cry a lot. But it is possible. And I’m doing it. And you can too. 

Spoonie Story: Christel Evans

Hello my name is Christel Evans and I live with Lyme disease.


spoonie christel

I know you’re thinking “she doesn’t look sick”. But I really don’t even know where to begin because this has been a part of my life since I can remember. My mom noticed when I was younger that I would have facial tics. This is where you can’t control the muscles in your face and they just move on their own. When I got older I started having severe muscle spasms throughout my body. This is when I was about maybe 6 or 7 years old. When I started going through puberty it got even worse. I was always sick as a kid and doctors would always just tell my mom that I’m a kid and I’m just making it up. When you’re that young you even start to believe the doctors and just try to live your life normally but that was never my case. I was alone for a very long time and no one would believe me not even my own family and friends.

By the age of 13 my body would have uncontrollable muscle spasms and verbal spasms as well. So test after test after test and nothing would come up. Many vials of blood were taken. Many different Specialists were seen. I have had so many MRIs, CAT scans, EKGs, EEGs, and so much more done as a child. I was just always sick. But the older I got the more crazy the doctors thought I was. They even decided to tell me i was epileptic and Tourette’s. When I was 15 I had a severe seizure at school. To me these seizures are just uncontrollable muscle spasms and it feels like someone is electrocuting your whole entire body and you can’t control it. We went straight to the neurologist and they did an MRI. All I can remember is them telling me to stop moving and I could just remember yelling at them I can’t.

After having my son, who also needs to be tested and possibly treated for Lyme, I lived with severe vertigo, constant migraines, and just overall pain everyday. There are good days and bad days but mainly bad days. I lost many jobs because of this invisible disease. They still to this day can’t seem to find anything wrong and what’s causing these seizures. It wasn’t until I was 23 years old when I found out I had Lyme disease. I was working at my old job driving rental cars and something unexpected happened. My whole right face started drooping and I couldn’t control my face any longer. I started having my seizures but because I was driving I forced myself to focus until I got to a safe place. Then my wife, who at the time was my girlfriend, came and picked me up and took me to St. Mary’s Medical Hospital. They wouldn’t see me for a while and I even told the doctors it seemed like I was having Bell’s palsy. The doctor kept insisting no it’s not Bell’s palsy it’s something else and then proceeded to give me a muscle relaxer after I told them I was not allowed to have that because of my heart condition. I started to feel really sick at this point and they realized I wasn’t knocked out yet. So they then proceeded to shoot me up again with something else and told us that it was just more muscle relaxers.

Come to find out they thought I was schizophrenic and gave me a high dosage of Ativan & Chlorpromazine. They then filled a script for me to take at home called Thorazine. After the last dosage they gave me through my butt I knocked out and my heart stopped. I didn’t wake up for another 3 days in my home. And from then on I have had nothing but horrible blackouts. I decided to go back to the neurologist and make sure everything was okay. That is when he decided to tell me my blood results came back and showed positive for Lyme disease but not to worry because it’s not a real disease. He then proceeded to tell me that I needed to go to the University of Miami and live in a glass box for two weeks to be studied on because they cannot figure out why I have these so-called seizures.

That is when I took matters into my own hands and looked up Lyme disease. Never saw that neurologist again let me tell you that. It’s very hard to find a Lyme doctor in Florida. But my mom somehow found a doctor for me to go speak to. Most doctors lose their practice or their license because they help people like me. These doctors cannot take insurance  so everything is out of pocket.  I paid $700  for me to sit with a Lyme doctor for 3 hours. This doesn’t even include the blood testing that needs to be done and that costs an arm and a leg. You want to know about medications? I haven’t even gotten that far because of how expensive everything is. I just try to live my life as normal as I can and be healthy. I’m hoping to go to Jacksonville soon to get the rest of the help that I need. Until then this is my story and it’s still being written.

My Symptoms:
-Uncontrollable muscle spasms
-Facial tics
-Severe migraines
-Heart palpitations
-Numbness in my fingers and toes and even sometimes legs
-Severe pain throughout my whole body
-Feels like someone is electrocuting my spine
-Unable to with stand too much heat or cold
-Vitamin waster
-Memory Loss
-Constant confusion
This is just a small list of things I live with on a daily basis….I hope my story can help many others that are being told they are crazy or nothing is wrong with them. Don’t ever fall into a depression because of someone with a Dr. degree is telling you you’re making it up. Because there are so many others with you. I am someone who lives with Chronic Lyme Disease and may never have a different life but that wont stop me from living my life. Never give up. Ill keep you all posted once i go to Jacksonville!
Love Always,
Christel Evans


ANSchart (1)

Dysautonomia (“Dys” from the Greek word for bad or malformed and “Autonomia” referring to the body’s autonomic nervous system (ANS)) is an umbrella term referring to a failure of the sympathetic or parasympathetic parts of the autonomic nervous system (ANS). It may also refer to an overactive ANS. The ANS is what controls the involuntary functions of the body. It affects the nerves, which carry information from the brain to the rest of the automatic nervous system, including the heart, blood vessels, bladder and sweat glands.

Dysautonomia can cause problems within the heart, affecting heart rate, body temperature and blood pressure. It is often a secondary symptom of other chronic illnesses. Some dysautonomia conditions are reversible however, many conditions, such as co-morbidity with Parkinson’s disease are not. It may affect a local area of the body, or be more generalized throughout the body.

Dysautonomia affects over one million Americans and close to 70 million people worldwide. It affects both men and women. Despite its prevalence, dysautonomia may take a long time to be diagnosed due to the lack of awareness among patients and physicians. It is an “invisible” disease, as symptoms occur within the body. Often symptoms are more observable after the patient is exposed to heat, anxiety, or physical activity.

The most common forms are POTS (Postural Orthostatic Tachycardia Syndrome), NCS (Neurocardiogenic Syncope), MSA (Multiple Systems Atrophy) and PNF (Pure Autonomic Failure).


ANSchart (1)



Dysautonomia can occur due to injury of the ANS from another disorder, and may be genetic. It may also be caused by exposure to toxic chemicals, trauma or a viral illness. Some of the diseases that may cause dysautonomia are:

Diabetes                                                    Multiple Sclerosis
Alcoholism                                                Guillian Barre Syndrome
Parkinson Disease                                   POTS
Ehlers-Danlos Syndrome                       Lyme disease
Injury to the spinal cord or nerves       HIV
Celiac Disease                                           Lupus

Symptoms and Diagnosis

To diagnose dysautonomia, the physician will test the functionality of the ANS, especially on the organs that are affected. Tests will likely include measuring blood pressure and heart rate in several positions, using a tilt table, sweat testing, and deep breathing.
Common symptoms of dysautonomia are fatigue, impotence in men, faintness upon standing, rapid pulse rate with exertion, weakness, dry mouth, cognitive impairment, orthostatic hypotension, urinary incontinence, and constipation.

Treatment and Management

While there is generally no cure for dysautonomia, treatment of the co-morbid illnesses may be beneficial in reduction of the symptoms. Medications may be used to treat the individual symptoms of dysautonomia, such as controlling blood glucose and using medication to treat acid-reflux, or giving injections of botulinum toxin type A to manage hyperhidrosis (excessive sweating). Other management measures can include elevating the head of the bed, and adding a high-salt diet and other lifestyle changes. Taking cooler showers, standing slowly from a sitting position and other postural changes may help.

tempurpedic bed


Depending on the cause of dysautonomia in the individual, prognosis can vary.

A few great places to find reference materials about dysautonomia are the National Dysautonomia Research Foundation, and the National Institute of Neurological Disorders and Stroke. At Dysautonomia International, there are excellent materials for patients, physicians and educators, including brochures and slideshows to spread awareness of dysautonomia.

All You Need To Know About Chronic Lyme Disease!

bulls eye rash

What exactly is Chronic Lyme Disease?

tick in skin


Lyme disease is a bacterial infection that is caused by Borrelia burgdorferi bacteria. The majority of cases have been caused by black legged ticks or deer ticks. The patient is bitten and the bacteria carrying tick will infect the patient with chronic Lyme disease.



Symptoms of Chronic Lyme Disease

bulls eye rash


The patient will soon experience some of the common chronic Lyme diseases in the early stages such as: stiff neck, fever, fatigue, joint pain and muscle aches. The patient may also have rashes around the the bitten area, most notably the bulls-eye rash. In some extreme cases, the patients may have nerve problems and arthritis.


How is Lyme Disease Transmitted?

Lyme disease is mainly transmitted by the bite from a specific tick. The animals that transmit these insects are mice, deer, black legged ticks and raccoons.


Risk Factors for Chronic Lyme Disease


Chronic lyme disease is also termed as “post lyme disease syndrome” and because of its lingering affects there are certain risk factors. If it is not treated properly or ignored the symptoms then the disease will progress to a stage where the effects might last even for years after the initial tick bite.


Effective Ways To Treat Lyme Disease

If symptoms are recognized early, then the patient may be cured with antibiotics; the sooner the medications are given, the better. If the patient is less than 9 years of age or a pregnant woman then amoxicillin or penicillin is prescribed by the doctor. If the symptoms are not showing any signs of stopping then patients might need internal cardiac pacemaker because they might have a chance to experience long term heart damage.


Complications of Chronic Lyme Disease

Lyme disease symptoms


Chronic Lyme Disease may severely affect the patients mobility and cognitive skills. They need to learn how to manage their extreme lifestyle changes and emotional stress as well. Patients should not lose their hopes quickly and should consult their doctors about remedies and therapy.

Diagnosis of Lyme Disease

Lyme disease is generally tested with a blood test and checks the antibodies to the bacteria that is causing the disease. The ELISA test is the most effective diagnosis for lyme disease. Other diagnosis including spinal tap where the spinal fluid is ejaculated from the spinal canal for testing.


How to Prevent Lyme Disease.

Prevention is always better than having to cure. It’s better to use insect repellant when you are going to wooded or grassy areas or wet pitches. You should avoid high grasses while hiking and changing clothes after hiking is also a good idea. If you are a pet owner then you should always check your pets for ticks every once in a while and clean them as well.

Remove the tick if you notice it immediately. You must remove it with the help of hair pin or tweezers and detach it completely. Buy a tick removal kit before your trip or night out for safety measures. If the tick is removed then you can be in your comfort zone. Do not squeeze the tick as it will “vomit” into your skin.

Some more interesting tips here-


Where is Chronic Lyme Disease Spreading?

lyme disease map

Chronic Lyme disease is reported in all 50 US states and more than 65 countries worldwide. Lyme disease was first discovered in England and since then it has been expanding throughout the world. WHO is constantly working for a effective medications for it.

Spoonie Story: Tina

spoonie story tina

Hello, I’m new to this community and this might sound strange but after reading several of the post on here I finally don’t feel alone. I can’t thank you guys enough for sharing how you feel and having this private group.

spoonie story  tina
I have all kinds of family and I’m a mother and I have a kind and loving fiancé who literally takes care of me but I still feel like people just don’t get it. And sometimes I think they actually forget I’m always in pain.

I was diagnosed with what they called a severe case of Fibromyalgia, and Chroniuc Lyme disease. Two years ago I was me! I was a dance coach, and an entrepreneur of a wedding and event company. I’m a free spirit kind of girl so being a Dance Coach for the local school district Monday-Friday and an ordained minister and event planner on weekends was my cup of tea.
I ran three to five miles a day and swam in Lake Michigan every single day (weather permitting) for no less than 40 min. Then one night in the middle of the night my legs started to spasm and my body was having trimmers.

It felt like my bones were detaching from my muscle. It was excruciating. The ER Doctor was stumped and said he could see the muscle moving with his own eyes but couldn’t tell me why it was happening.

Since then it’s been a min by min struggle. Every single day I’m in pain. Some days are better than others but everyday is painful. I go months on end were my legs, hips, back and shoulders just won’t carry me.

Most days I’m swollen head to toe, sometimes the swelling is random. I have nausea all the time so I’ve lost 30 lbs just from that and the stomach pains.

I can’t even touch my shins because they hurt that bad. Every once and a while I can get up and walk slowly and carefully but mostly if I need to pee someone has to physically put me in my wheelchair and push me and place me on the toilet ( so humiliating ).

This is not me! I feel like I can say this to you guys because you get it, but I feel like I am alone even though I’m surrounded by family and love. I’m always tired like crazy stupid tired. How does someone who has ADD & ADHD become so fatigued all the time. I don’t let my kids see me cry and they are always helping out and asking how I feel. I love my life but I hate this person I’ve been forced to be. I feel like my soul is a prisoner in this shell of a body just dying to get out and be me.