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Didn’t even realize…

Didn’t even realize … I couldn’t do it anymore without severe consequences.

Needless to say I am still struggling to find that balance for myself and what I can handle, be ehh after vs pushing myself farther than I should have because my brain doesn’t understand my body just can’t. Now am severely am / going to be paying the issues over the next week+.

Went on my first really long car ride OH to SC and back over a span of 4 days. To pick up my daughter from Bootcamp Graduation and Celebrate her becoming a Marine.

I didn’t have to drive to much which I have kinda figured out I really start having issues after driving an hour and am absolutely drained to nothing after. Every little movement in this car ride just sends shooting pain down my nerves.

So needless to say I have been gritting my teeth sense Wednesday. So I can actually have a smile on my face and show how proud I am of her and to celebrate with my family.

So yep…. It’s been a long never ending day the last 4 days and have not slept. On the positive I will be home in 30 minutes and hopefully relax my body.

#MixedConnectiveTissueDiseaseMCTD #Anxiety #Depression #RaynaudsDisease #RaynaudsPhenomenon #ChronicMigraines #Nervedamage #AutoimmuneAutonomicNeuropathy


What's one thing you wish you knew when you were diagnosed with chronic pain?

If you've been working through your own chronic pain for a while now – what would you tell someone who's just been diagnosed that you wish you had known?

I'll start...

I wish someone had told me to NEVER compare myself to others who were also sick. Pain management looks different for everyone. #ChronicPain #Neuropathy #neuralgia #ComplexRegionalPainSyndrome #Fibromyalgia #Nervedamage #MultipleSclerosis #Arthritis #Shingles #Migraines #BackPain #Cancer

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What are your favorite gastroparesis-friendly snacks, meals, and drinks?

Finding safe foods and drinks is a difficult and exhausting process, especially when dealing with everything else gastroparesis entails.

After I was diagnosed (which was a whole process in and of itself, as I’m sure we all know too well), my gastroenterologist’s office just told me to “look up the gastroparesis diet online.” Yeah, not helpful. While there is some information online about the diet, it’s hard to follow, physically and mentally, and requires a lot of patience as you test your limits.

While I’m still searching for the ideal plan for my gastroparesis journey (I will admit that I do love taste-testing different flavors of Ensure), I want to hear from you, my fellow Mighties living with gastroparesis! Friends, what are your favorite or go-to gastroparesis-friendly snacks, meals, and drinks?

#Gastroparesis #Diabetes #EhlersDanlosSyndrome #EDS #CheckInWithMe #Neuropathy #Nervedamage #underactivethyroid #Hypothyroidism #Scleroderma #Lupus #Parkinsons #MultipleSclerosis #MS

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How much do you push your body when in an effort to fight for mobility you can’t control the nerve pain or the muscle spacticity and spasms?

I’m living with chronic intense spine pain with nerve damage and muscle atrophy in my lower body. Just a few weeks ago I was in a wheelchair for eleven days straight and could not walk at all. I haven’t been able to do anything besides the bare basics of caring for myself and my pup. Yes, the bare basics. I’m not in a wheelchair right this minute but I cannot walk without my rollator or walker with my attached cane. It’s been that way for a long time now, years.

Anyway, I’m trying to walk (via walker) and track my steps, push myself a little more each day.

The pain, burning and numbness take over my body and I have to stop repeatedly to bend my spine forward and relieve the pain and pressure, ease the burning. It’s horrible and the pain sucks but still, I want my life back and I’m not going down without a whole lot more fighting (again). Yes, I’ve been living with chronic pain my entire adult life, so it’s been an ongoing battle for years.

The problem I’m having right now and daily is: when I’m pushing for mobility and trying to save my lower body (mid spine to feet) from being permanently paralyzed I’m fighting nerve damage that only relieves with ice for hours (mid to low spine and bum and hips) but muscle spasms that only relieve with heat (legs/feet).

Just exactly how much muscle spasms/spasticity is too much and how do I know if I’m pushing way too much or just not enough? I’m really not knowing and I know if I don’t keep fighting and just stay in whats comfortable and least painful I won’t be out of the wheelchair very long. Any tips, advice? I welcome them all please. This pain is making me a little bit nuts and I’m using ice and heat at the same time to combat the different parts and symptoms on my lower body. I’m exhausted and frustrated to say the least. #ChronicPain #FailedBackSurgery #Nervedamage #DDD #Osteoarthritis #spinestimulator #migratedleadwire #Exercise #Neuropathy #MuscleWasting #Tremors #numb #tingling #Burning #Spasticity #musclespasms #mobility #Fibromyalgia

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New Month! #welcomeMay #ChronicPain #MentalIllness

Hoping, praying this new month is bringing us strength, blessings, love and overall lots of patience and understanding. We all know how hard it can be to find people that will support and stand by us! Our illnesses do not define us! Hugs! 💕🥰🙏 #ChronicPain #MentalHealth #type2diabetic #ChronicIllness #ChronicMigraines #Fibromyalgia #Nervedamage

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Hello Everryboddy ! ( I'm saying hello in my best Grover voice. ...a blue fur covered muppet from Sesame Street kid's program. )

I was told that I should come and say hello. My name is Tavia, short version of Octavia. I am married. I live in bed ( if you can call that living..) due to the pain of several chronic pain conditions /injuries from a serious car accident I was in 23 years ago. I am now in my 50s. I deal with a lot of loneliness and isolation and some depression about losing my life and most of the people I cared about to an existence in pain.

#EhlersDanlosSyndrome #Fibromyalgia #AnkylosingSpondylitis #SpinalStenosis #ChronicMigraines #sciatica #Bursitis #Nervedamage #cervicalfusion #cervicaldiscectomy #spinalbonespurs #Hypothyroidism #PeripheralNeuropathy #numbness #Insomnia


Share your experience with depression and connect with people to support you.

Treating Symptoms and Finding Answers

This is my first post, but I am hoping to get some opinions from people. I have battling chronic illness for years and it has recently gotten bad. I have a lot of blood work/tests that indicates a problem, but is very unspecific. I'm starting a new medication to treat the pain I experience (assuming it works), but I am experiencing some cognitive dissonance about the whole thing. I want the pain to go away, but I desperately want an answer, a reason for the pain. If my pain goes away, I am afraid doctors will stop helping me try to find an answer. Do I NEED an answer? Or do I just want an answer to make myself feel better mentally? If the medication works, should I stop looking for an answer? I don't want the past 5 years to be chalked up to nothing and just be stuck taking random pills. Any thoughts/advice is appreciated.#LymeDisease #ChronicIllness #AutoimmuneDisease #Undiagnosed #Mystery #AbsenceSeizures #Nervedamage


Advice for stopping Savella

Does anyone have any suggestions for how I should go about tapering off of Savella? I tried contacting my doctor but haven’t heard back. I’m having some symptoms that I don’t like and I’m thinking they could be caused from the Savella. I looked online for suggestions and all I could find was that it’s important to taper slowly and not to stop cold-turkey. However I could really use more specific advice for how to taper the dose safely. I’m currently taking the max dose of 200mg/per day (100mg in morning and 100mg at bedtime). If anyone else has had to stop this medication, your input on how you went about it, will be greatly appreciated.
#Fibromyalgia #ME /CFS #Migraine #IBS #ic #Nervedamage #DegenerativeDiscDisease #FoodAllergies #fragranceallergies #KidneyStones #spinalmass #Depression #sensorysensitivities

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Medical Marijuana ~ I Never thought I’d Be a 50 Year-Old Stoner. But Here I Am.

Life with chronic illness is hard.

Living every day in pain and with illnesses/conditions, is a lot to manage.
There is medication (so.many.pills), physical therapy, occupational therapy, doctors, health insurance issues, massage therapy, trigger point injections, muscle Botox, dry needling (#FibromyalgiaDiagnosis ), home exercise programs, “pre-gaming” showers with electrolytes so that I don’t faint from the heat and standing for too long (#LivingWithPOTS ), making sure I get enough sleep, and the acrobatics of just trying to get dressed by myself (#JointHypermobilitySyndrome ) without falling over (#Neuropathy ).

Most clothing hurts my skin (#SmallFiberNeuropathy ). You’ll usually find me in *soft clothes* (pajamas, leggings, no zippers, buttons, or stitching).

The rest of my day usually consists of ice/heating muscle spasms, trying to calm/stop fasciculations (#Nervedamage ), deciding which assistive device to use when going out, and worrying whether or not I’ll be able to sleep at night.

I cannot sleep in a bed, I sleep ON the bed - with a light blanket. Under the weight of the duvet, I’m too weak to turn over and change positions (#muscleweakness from so much muscle wasting).
And all of this is just managing my baseline.

It’s hard, after being in the cycle of being sick for so long, to remember what HUMAN feels like. Or what it’s supposed to…
Should I stay in bed or get up? Will showering help with the muscle pain, but make me faint because of the #POTS ?
Where is today’s pain coming from? Joints (#Osteoarthritis ), Muscles? Nerves? Bones?
I can always play my favorite game - “Heat It Or Ice It??”

I am not part of the opioid crisis in America. I am allergic to every pain medication available by Rx.
In the spring of 2019, I got my #MedicalMarijuana card (against my judgement/will/everything…because, well, #Stigma ).

I did not partake in college (I was actually allergic to the smoke, so when everyone else was getting high, I always had to go wait outside 💨 🤣).

Now I wondered what people would think. I didn’t want my teenagers to have a mother who was a stoner.
I didn’t want my friends to think I was high all of the time.

It didn’t help that my parents passed judgement…..

Then I tried it and decided WTF, because it WORKED!
Holy shit. Like, for reals, my pain was GONE. The nerves, muscles, all of it. And I slept. Like a little baby.
It literally changed and saved my life.

If I’m not sleeping during a flare up , or desperately trying to distract myself with something (anything), I’m stoned.
And probably keeping up with my dog’s instagram page. (Yes, simultaneously).

Any other pain-free stoners out there?
I’d love to hear what works for you.
#Dysautonomia #HypermobileTypeEDS #OccipitalNeuralgia #DegenerativeDiscDisease #Osteoarthritis #AutoimmuneDisease #ChronicPain #InvisibleIllness

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I am struggling with insecurities. My daughter is graduating from high school (homeschool) at the end of this month. As a way of celebrating we are taking a family vacation to Galveston, Texas to enjoy the beach and the ocean. It was my idea, so even though I’ve been dealing with recovery from surgery (nerve damage pain included), as well as my fibromyalgia and my many other chronic health issues that have been causing problems, I’ve been feeling excited about the trip...until now. My husband just informed me that he invited his best friend, the friend’s wife and young daughter to join us in Galveston. Now don’t get me wrong, I like all of them, but the friend’s wife has always caused me to feel extremely insecure about myself every time I am around her. She doesn’t do anything specifically towards me that causes this, it’s just that she is a very high maintenance kind of woman that always has her hair and makeup done perfectly and is dressed in the cutest, most stylish outfits and shoes and I am the exact opposite of that. I rarely wear makeup anymore because of allergies and skin issues, our income is much less than theirs, so I tend to bargain shop for clothes and shoes for myself, my husband and our four kids, and due to all my health problems I cut off my long hair into a very short pixie and only bother to style it when I have somewhere to go. I simply feel like I am not good enough when I’m standing next to her. About two years ago she went through a battle with cervical cancer. It was caught early so it was able to be cured. Not long after that she was diagnosed with fibromyalgia and I thought that was a commonality that would help us connect more as friends, but it didn’t. Even though she is nice, we just don’t have anything in common. Again, the kind of woman she is, and the way she presents herself, always leaves me feeling like I’m not enough when I spend time with her. Now I might end up having to spend a whole week sharing our vacation time with her and my anxiety is through the roof just thinking about how I’m going to be stuck feeling the whole week. I know that I shouldn’t feel like this. I am a relatively confident woman around everyone else. It is ridiculous of me, but I just can’t seem to change my mental or emotional reaction any time I’m around her. Any advice on how to handle these feelings? # #Fibromyalgia #Migraine #ChronicFatigue #IrritableBowelSyndromeIBS #InterstitialCystitis #Allergies #Nervedamage #Surgery