SpoonieHacks

The Neurologist found Neuropathy in my legs and feet. Next, blood testing. I've gotten a few tests back, some were sent out. A few elevated proteins, positive ANA, high sed rate, all pointing to inflammation. His best guess was a connective tissue disease and not MS. He also thought I might have secondary Erythromelalgia. (No surprise there)

I just hope they find out what's causing my neuropathy. My feet are worse than I thought. Kind of scary..

I started out on gabapentin, and it has helped with the pain, which is good news :-) I know there's so much going on in the world and I continue to keep Ukraine, its people, in my thoughts and prayers.

Soon I add to PT , steroid injections in my back and chiropractor visits for Kyposis, etc. Not really sure how this will pan out, especially the 3 hour round trip drive :S

Guess I'll stop bitchn and just do my best. Kinda nervous though! #PeripheralNeuropathy #ukraine #peace #Anxiety #PTSD #Depression #MentalHealth #RareDisease #ChronicPain #ChronicIllness #Erythromelalgia #CheckInWithMe #MightyPets #Migraine #Upallnight #Neuropathy #DistractMe #SpoonieHacks #Trauma #Vasculitis #Ana #kyposis #Arthritis #Inflammation

Cannot sleep again any up for a #Chat #Fibromyalgia #ChronicPain #Pain #ChronicFatigue #Anxiety #Depression #MentalHealth #Conversation #UK #Advice #Tips #BrainFog #Fatigue #Insomnia #Tinnitus #GAD #Information #mighty #TheMighty #nausea #OnedayAtaTime #Spoonie #chargie #SpoonieHacks #zzz

It’s almost summer where I live and oh wow, is it hot right now. I am doing absolutely everything I can to keep cool. I have been taking cooler showers, sleeping with less blankets, drinking more water and electrolytes. And yet… I am still finding myself overheating in the middle of the day. How do you stay cool when the weather is in the 90s (30s for our Celsius friends) and above? Let me know ☀️

P.S. Stay cool!

#MentalHealth #ChronicIllness #RareDisease #Disability #Parenting #Autism #HypothyroidismUnderactiveThyroidDisease #Hacks #CheckInWithMe #DistractMe #52SmallThings #selfcare #SpoonieHacks #Summer #themightylife

Hey Mighties 💪🤗!

Do you struggle with having the right type of support for your health problems or journey through them?

There's a perception on one end that a family member may feel they are supportive by offering advice or driving you to an appointment every once in a while. Does that sound familiar? But, you feel like your lacking support in other ways?

Are you familiar with " The 5 languages of love?"
It's a book that helps people learn what tools they go for when they feel fulfilled and care for by others and how they show they care others.

By applying that same logic to support this could help you and your family communicate your needs. Even though each "language" doesn't exactly apply in this scenario, the principle may help you better explain what you need to feel heard and supported.

For example, when my family validates how proud they are of me being successful in spite of all of my health problems OR that they can empathize with the amount of pain I could be in and give me space, I appreciate it SO much. These are basically words of affirmation.

For you, it could be that you family member buys you something that helps you navigate the home or car easier. Maybe it's a tool to help you cook easier too. That would be "gifts" language.

Check out this book and let me know what you need from your family. Maybe it will help you better describe what works and what doesn't.

#SpoonieHacks
#FibromyalgiaDiagnosis
#MentalHealth
#ChronicPain
#Fatigue
#MultipleSclerosis
#Lupus
#Depression
#Disability

Studying is already tough, add brain fog and it's an overwhelming mess.

What helped me:

1. Go to the student center at college or your school counselor (in high school). Have them start a "504 plan" or request extended time to do things like write papers, take tests, hand in homework by using the ADA (Americans disability act). This requires a doctor's note.

2. Figure out your brain fog triggers.
Some examples are:
😳low B12,6 (*optimal* range of lab work B12=500-1000) Optimal is different than "regular" ranges. It's more precise.
😳Food sensitivities: gluten, soy, dairy. These are hidden in everything from spices to tic tacs/gum/salad dressing etc. I've found that avoiding inflammatory foods helped A TON.

3. Get a study buddy who is in class and gets paid to help other students. They can work with you whenever you need them to and at your own pace.

4. Learn when you're at your best. Is it morning or night time? Focus and study then.

What suggestions will you try?

#SpoonieProblems
#SpoonieHacks
#BrainFog
#Fibromyalgia
#Student
#Teen
#College
#ChronicPain
#MyalgicEncephalomyelitis
#ChronicFatigue
#Depression
#MentalHealth

You know those people that wake up in the morning and just "go" without thinking about how to get ready, how to get up and not be in pain? EWW. Kidding.

They are lucky and you can be too!

NO matter your cause, here is some great insight on WHY it happens and what to do to prevent most of it.

Here are some underlying causes of stiff/painful joints in our hands, arms, back, and neck that make our chronic conditions (lupus, fibro, RA, MS) worse!

1. The type of pillow you use and bed top.

2. Type of diet - there is a "good" and "bad" version of "healthy foods and diets" even with Keto, Paleo, Vegan. For example, granola bars, bread, yogurt, and cereal are packed (at least in the USA) with sugar.

Companies MUST list their ingredients from most used to least used starting at the top. If sugar is in the top row, that means majority of that item is SUGAR. Sugar feeds inflammation in our body, causing pain.

We don't learn anything about nutrition in school and doctors only take maybe 1-3 classes on nutrition because their expertise is on medicine and practing emergency medicine. It's best to work with a holistic nutritionist on stuff like this.

👉Check out prevous posts on EASY and healthy meals for when you're struggling.

3. Sitting most of the day = stiff/tension.
Our muscles are internconnected. If one muscle is tight, it will pull on others. That causes an uneven pull to surrounding muslces and organs/bones/tendons. Then the wrong muscle is overworking and over compensating.

For example, you could have lower back problems that are caused by a tight ANKLE muscle! Shocked? It's important to stretch at least 4 times a week. Look into "active stretching", "gravity yoga".

Solutions:

1. Whole foods diet no matter what you follow, choose the healthy version of it 80% of the time. We're human, so indulge with balance. For me, by going strickly healthy paleo for 30 days and then slowly reintroducing "healthy" cupcakes or bread, I noticed what my body could and couldn't handle in small doses. It has changed my life with 8 autoimmune diseases. Start low and slow by making one change to one meal each week. Some things to incorporate: Some of the best anti-inflammatory foods include wild caught fish, fruits and vegetables, olive oil, nuts and seeds, and tumeric.

2. Supplements: Chondrotin and glucosamine, tumeric, evening primrose oil, and a quality fish oil from Norweigen origin (Rosita or Carlsons brand is great).

3. Pillows and routine - Check out bamboo based or memory foam pillows. I set my alarm for 30 minutes earlier and lay in bed until I'm ready to get up and stretch/workout!

As always, this are just general suggestions. Work with a qualified practitioner to review what is best for you.

#FibromyalgiaDiagnosis
#Fibromyalgia
#Lupus
#ChronicPain
#LivingWithPOTS
#RheumatoidArthritis
#Arthritis
#SpoonieProblems
#SpoonieHacks
#CheckInWithMe

Here are some tips that help me feel good about myself when I have to run errands, go to the doctor's, or have lunch with family/friends.

1. Eye liner under the top eyelid with mascara takes 30 seconds and brings some attention to those colorful beauties.

2. A sprinkle of blush brings some color to my pale white face(thanks winter)

3. Clean shoes/sneakers are a must. Footware makes or breaks an outfit. You could be wearing leggings with a sweater, jeans with a sweatshirt, comfy pants and a t-shirt. As long as your sneakers, flats, sandles are clean it bumps you up to stylish.

3b. Throw a hat on too. Hats can be sporty, artsy, fun, and stylish.

If you have nice flats or stylish sneakers, it bumps up that outfit 10x always.

There you have it, you're comfortable while feeling and looking good.

Do you have a go-to outfit style for when you don't feel well, but need to look good?

#SpoonieHacks
#MyalgicEncephalomyelitis
#ChronicFatigue
#ChronicPain
#MentalHealth
#Depression
#Fibromyalgia
#CheckInWithMe
#Parenting

There are so many variables to weight issues. But, I've found a few underlying issues that could be stopping us from being healthier and achieveing our goals.

1. Thyroid issues. The lab results are out of date and doctor's are not proactive when we're boarderline "high" or "low".
This Doctor has all you need to know about it: thyroidpharmacist.com

2. Are you eating enough AND the right foods?

When we suffer with chronic conditions, we need to be more indivualized and not a one size fits all approach. I've found that the food pyramid includes inflammatory foods like dairy and wheat. Wheat protein are lab altered and not the same as what our ancestors had, look up the history on it! It resemble some of our organ proteins, especially the thyroid.
Since our body isn't functionaing properly, it will attack all things similiar.

Lastly, veggies and fruits hold ALL of the nutrients your immune system needs to function. Enjoy the rainbow of colors!

Diet should be 80/20 of fresh, whole foods veggies, the rest fats, proteins, and some fruit. If you're wondering what about carbs, well veggies have carbs, that's why with the keto diet, veggies are very limited.

Fresh food grown locally, at home, or even at Aldi's is way more afforadble than trending grocery stores like whole foods, trader joes et .

Did you know healthy fats are your friend (within reason). Healthy fats keep us feelign fuller longer, give our brain much needed energy ( it's fueled off of fats).

Sugar is inflammatory, making it harder on our body to communiate and work properly. Sugar spikes insulin levels, your body's "storage" hormone and ciruclating glucose is swept into your cells.

If your cells are full already due to a diet high in sugar, then this glucose is conerted and stored as body fat. Check out "whole foods diet" "Paleo" or anything that is highly fresh produce and veggie based.

Meat is important as well, so don't you worry!

Just stick with lean meats like turkey, chicken, and fresh seafood.

#WeightFluctuation
#CheckInWithMe
#ThyroidDisease
#HashimotosThyroiditis
#SpoonieHacks
#LivingWithPOTS
#Lupus
#Fibromyalgia
#RheumatoidArthritis
#MentalHealth

I've suffered with debilitating chronic fatigue due to lupus, fibromyalgia, adenomyosis and hashimotos (to name a few). Plus, being in pain all day made me unmotivated to even move. It was a viscious cycle. I was sick of the meds and sick of doctor's saying everything seems fine.

If it was fine - I wouldn't be contimplating whether to quit my job and accept that this will be the rest of my life - crappy and useless.

So, I went to doctor's who practice functional medicine. They are doctor's who go to the same med school as conventional doctors, but then go further into this speciality. It usually happens after they get sick and can't get better too.

They did in-depth testing (which was sent to my convetinoal doctors and they submitted blood work so it's covered by insurance). When my conventional doctor tested my thyroid it was fine. I learned they only test TSH and maybe T3,T4 (if you're lucky).

My FM doctor had tested TSH, T3,T4, RT4,RT3, and Thyroid Antibodies. She also used a smaller range that is more precise.

She put me on a compounded T3/T4 medicine and low dose naltrexone. That was a game changer. Once I learned that FM doctor's look at things more precise to prevent symptoms and dig to the root cause as compared to taking meds that only address managing symptoms for chronic disease.

I learned this:

1. Low Dose Naltrexone helps increase energy and dopamine levels (www.lowdosenaltrexone.org) and also helps treat lupus, fibro, hashimotos, lyme, and MS.

2. Tame inflammation occuring inside via anti-inflammatories (tumeric, CBD, primrose oil, plant heavy meals (80% of your plate is veggies)

3. Check your: D, B12, B6, Mg levels.

They should be in an optimal range, not "normal range".

Optimal means your body has enough & everyone is different.

Example, D levels 60-90ul show to be beneficial overall as compared to those with 35 or less.

Lastly, adrenal fatigue is a real thing to look into! Dr. Mark Hyman, Dr. Terry Whal, and others talk about this often.

I hope these help you find the peace and energy you're looking for!!

*As always, this is not medical advice to be taken in replace of your doctor. Personal stories only.

#SpoonieProblems
#SpoonieHacks
#ChronicFatigue
#ChronicPain
#Lupus
#MultipleSclerosis
#HashimotosThyroiditis
#Disability
#LymeDisease
#Migraine