Chronic Daily Headache

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Telling colleagues why I’m off work

I’ve been off work for a few months while we investigate some newly developed and worsening health issues. A few colleagues that I’m friendly with have started to reach out to me and I’m not sure what to tell people because I don’t have a diagnosis yet. I don’t want to share details, but I’m really hopeful that I’ll be able to go back to work with these people some day soon, so I also don’t want anyone thinking I’m just using this as an excuse for a long holiday. I know I shouldn’t care what anyone else thinks, but I do have a professional reputation and in that environment (very large federal government department), I work with a lot of people and it doesn’t take much for the rumor mill to cause lasting damage.

Any guidance or suggestions on how to approach these conversations?

#Fibromyalgia #Lupus #guidance #ChronicDailyHeadache #Headache #ChronicFatigue #MentalHealth

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General Update + New Diagnosis

So we got a diagnosis for Fibromyalgia from the Rheumatologist. And just recently I did get an official diagnosis for POTS. We have upcoming appointments with a dietician and a geneticist to discuss suspected type 3 EDS(I have the criteria and we were told this from a professional). Fibromyalgia is genetic and turns out my aunt had it. It lies dormant in your system until something traumatic happens and it triggers it. Hers was a car accident and we suspect mine might have been the HPV vaccine, we aren’t sure. Funny enough all this is rare to happen someone of my age, I’m not even an adult yet and here we are.

I don’t think of this as good or bad news but we are making progress and I view that in a positive light.

I am on a strict elimination diet because meds are our last resort especially with my track record of all of the rare side effects. I had to cut my hair because it was falling out because of Metoprolol, but on the positive side my hair is healthier shorter (it’s curly and was in need of a trim).

I have been eating rice, chicken, broccoli, cauliflower, gee(butter alternative), olive oil, 2 teaspoons of salt daily, and just water (80-100 oz daily). We also slowly reintroduced avocado and turkey which my body was fine with.

It is a slow and very annoying process because all I want right now is chocolate, bread, and ice cream (my kryptonite). The diet is working and I have done nothing but improve as of late. Although we tried a bunch of new things in one day and we regretted it shortly after because I wasn’t able to walk because of how dizzy I was, and I had a on and off migraine for 3 days. I had 1 chunk of pineapple, 2 strawberries, Liquid IV drink mix, and some supplements and my body did not like that. So we are taking it even slower now.

We know I can’t have gluten right now, and maybe sugar but I’m in denial about that right now. I have always been sensitive to sugar and caffeine, but I had a strawberry and I was okay so maybe there’s a limit on how much I can have? Although my blood work did say I have low blood sugar so we don’t know.

My metabolism has skyrocketed though! I eat that meal above 4-5 times a day now (and I’m still hungry), and I’m still losing weight (which isn’t necessarily good at 5’4 and 113 lbs). I have actually lost over 10 lbs of muscle since October so we are working on getting me active again.

Overall this is definitely a process and also an unintentional David’s fast lol. Life is looking up a bit finally!🩵

#Fibromyalgia #MightyTogether #ChronicFatigue #POTS #ChronicFatigueSyndrome #ChronicDailyHeadache #ChronicPain #Migraine #EhlersDanlosSyndrome #MentalHealth #Depression

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😳What Said What?!😳

When you live with a chronic health condition or disability, especially if you’re a younger looking person, young adult, or an ambulatory wheelchair user, there’s a good chance that you will have been unfortunate enough to have experienced some negative & hurtful comments from people.
There’s the classic comments that people living with Invisible Disabilities will have heard, for example “You don’t look sick.” & “It’s all in your head.”
Then there’s the unfortunate comments that people living with Mental Health conditions such as Depression & Anxiety will have heard, for example “Cheer up.” & “Stop worrying about it.”
And if you’re an Ambulatory Wheelchair User? Wow! The looks alone can be upsetting! I’ve lost count of the number of times I’ve been met by judgemental looks from people when we park our car in a Disabled Parking Space (I am a valid Blue Badge/Disabled Parking Permit holder) because I “don’t look sick/disabled” when I’m sitting in a car. These looks soon change when these people see my wheelchair but by then I’ve already started feeling awkward, embarrassed & like I have done something wrong when all that’s really “wrong” is that I have a neurological disorder which causes debilitating symptoms. It may be a brief moment of prejudice but that is still a brief moment too long in my books. It’s so important that we continue to raise awareness of the various chronic conditions & disabilities because it’s only through making people more aware these issues that change can happen & hopefully people with disabilities & chronic illnesses won’t have to deal with such rude, inappropriate & often upsetting remarks. In the meantime, when we heard comments that are hurtful or prejudice looks, we need to do our best not to let these remarks cause us any further damage or embarrassment – which is something that I definitely still struggle with a lot.
Stay strong, stay Mighty & by the best ‘you’ that you can be!
🧡💙💜💝
#ChronicIllness #ChronicPain #MentalHealth #Anxiety #Arthritis #BackPain #ChronicFatigue #ChronicFatigueSyndrome #FunctionalNeurologicalDisorder #ChronicDailyHeadache #ChronicLungDisease #Disability #ChronicObstructivePulmonaryDisease #ComplexRegionalPainSyndrome #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS #Lupus #Fibromyalgia #Grief #ADHD #AnorexiaNervosa #Endometriosis #MightyTogether #MightMinute

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“Listen to Your Body”

When you live with a chronic health condition there’s a good chance that you’ll have heard the phrase “Listen to your body” more than once. Which does sound a lot easier than it actually is because it’s not as easy to get your brain & body to agree!

#ChronicIllness #ChronicIllness #ChronicPain #FND #FunctionalNeurologicalDisorder #Arthritis #BackPain #ChronicFatigue #ChronicDailyHeadache #ChronicLungDisease #EhlersDanlosSyndrome #JointHypermobilitySyndrome #HypermobilitySyndrome #Fibromyalgia

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You Didn’t Ask for This

You didn’t ask for this, but you’re dealing with it nonetheless. Hang in there. Be kind to yourself. It isn’t your fault. There are struggles in life we have no control over.

#ChronicIllness #ChronicPain #ChronicFatigueSyndrome #ChronicDailyHeadache #Migraine

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I’m new here!

Hi, my name is Athenamjt. I just typed a long, boring story of my life living with multiple chronic, disabling illnesses and complications. Unfortunately, I hit the wrong button, and all of it disappeared. Now, I am too tired and depressed to start over. Welcome to the spoonieworld!

#MightyTogether #Anxiety #Depression #Fibromyalgia #Migraine #RheumatoidArthritis #Lupus #irritablebowelsyndrome(IBS) #ChronicPain #ChronicDailyHeadache #Arthritis

24 reactions 9 comments
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I'm New Here!

I am a 41 year old single mom of three amazing sons and a chronic illness warrior. I have been diagnosed with Small Fiber Neuropathy (SFN), Rheumatoid Arthritis(RA), Chronic Fatigue Syndrome, Irritable Bowel Syndrome (IBS), Reynard’s Disease, Hashimoto’s, Exocrine pancreatic insufficiency(EPI), chronic pain, migraines, and daily chronic headaches and anxiety. I have an upcoming appointment at the end of August to see a cardiologist as I have had two abnormal EKGs. #MightyTogether #HashimotosThyroiditis #SFN #RheumatoidArthritis #ChronicFatigue #ChronicDailyHeadache #ExocrinePancreaticInsufficiency #IrritableBowelSyndromeIBS #ChronicIllness #ChronicPain #Migraine #Anxiety

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