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I LOVE LIFE

Today is International SPS Awareness Day. I dedicate this article I wrote for l’orient le jour, a french publication, to all the people who have inspired me along this journey.#stiffpersonsyndrome #raredisease LOVE LIFE

I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome.

Almost four weeks ago, I came out of the Intensive Care Unit ALIVE - that word has never had such an impact in my life.

On the eve before the 12th of February, feeling weak I told my husband not to worry if I took time to call him post treatment. My mum asked me if I needed her to drop me, but I asked her to pick me up instead because I told her I did not feel ok.

It’s like I knew…

Post treatment, my blood pressure went so low that I passed out and after various attempts to wake me up I was taken to the ER and a few hours later to the ICU. I was soon diagnosed with Septic Shock due to four different bacteria in my blood. In twenty-four hours my condition became critical, and my dad asked my husband to travel immediately back to Beirut from Africa.

From these eighteen days, my memories are the ones that my subconscious created as I was delirious, in and out of consciousness.

I dreamt of life, and how much I loved it, of music and dancing. I heard my parents and husband’s voices and gentle words of love without being able to respond.

Their love and my strength woke me up and I was alive again and able to communicate.

I love life, my body and its strength is undeniable despite all of my sicknesses.

I am thirty-seven years old and neither Stiff Person Syndrome nor its treatments will defeat me.

Whatever defines you hold on to it, do the things you love, live life because it is truly beautiful, live every day and appreciate it.

Life, you brought me back I will not disappoint you.

To all my loved ones, this is for you!
#delirium #gastroparesis #coma #BackPain

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I'm Lost Today

Good day all. I'm wondering if you can identify. I feel lost today. I'm not quite sure who I am, how much more pain can I take, what's life going to be in 3 years or 5 years, why bother with all the self-care, why tolerate people who just can't understand, why do the cleaning, why bother with many doctor visits and tests, why, why, why bother? I am living to survive and surviving to live. I just don't know why today. I'm sure many of you have had this experience but I'd like to actually hear from someone. Have a great rest of your day. #BackPain #ChronicFatigueSyndrome #IBS#IBS #Anxiety #long haul constant pain #Tremor #Fibromyalgia

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All of a sudden I don't feel good at all

I've been sipping on some orange Gatorade for the last hour. I ate a chicken pita melt for lunch today. But all of a sudden I'm very shaky and dizzy and nauseous. I had 2 cups of coffee this morning. My tummy doesn't hurt and I don't have a migraine and I took 2 percocet this morning for my back pain so my back and hips don't hurt. But I'm feeling like I usually feel when I drink coffee on an empty stomach. I probably should eat something else. I think I'll have a honeybun. It'll soak up the coffee in my tummy.

#CheckInWithMe

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I'm new here!

Hi, my name is Ellyn. I'm looking for community and friendship. I believe I may have introduced myself before, but I have not been looking into the Mighties for awhile and lost touch. I am a stage 4 lung cancer survivor ( remission). I was diagnosed in 2017 and feel blessed to still be living life.! Although, I am far from the person I was before ca and all the treatments needed to get me into remission. Physically suffer from chronic fatigue and chest and back pain daily. I feel as though I am trying hard, but find myself discouraged and blaming myself with thoughts of (if I only tried harder and ignore this pain and fatigue that feels crippling). I believe other people , besides my own husband and close family, think I just need to try harder and have a different mental outlook. Although when I really think about it I am trying hard every day. Today I cleaned windows for 3 - 4 hours and I am exhausted! I am looking to hear stories from others suffering from chronic illness ( what ever type). Love to hear secrets on how you make it through your day. How to make and keep friends when life feels like it is getting smalller and smaller. Also, how to make on feel like they make a difference in this world and not just someone struggling to make it through the day.

Question for anyone suffering from lung scarring / lung disease- what does it mean when my oxygen drops with exercise but than recovers quickly? I notice big variations in my O2 sat from 99%-86%.

#MightyTogether #Anxiety #Depression #LungCancer

8 reactions 3 comments
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All my nerves are firing at once!

I am at my wit's end with pain! It is too bad right now to even go into details. Suffice it to say that I am suffering terribly. I think my chronic back pain, neurogenic claudication, and fibro have all the nerves in my body firing at once. I just NEED them to calm down. If you believe in prayer, will you please pray for me? Thank you so much!!! I can write more details when I am feeling better. Right now I just need to reach out to someone who understands. I know many of you dear folks do. Thank you!

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Health update 2

I finally got my blood drawn for Lyme Disease on Monday this week. My symptoms are continuing to get worse every 24 hrs. Whether it’s Lyme Disease or something parallel to Lyme, it now is aggressively erroding my joints. This morning my SI joint gave out. All I was doing was putting some pants on. I collapsed onto the floor with my pant still around my ankles. Went face first into the hardwood floor. I have been dealing with SI joint dysfunction for years now due to the 6 cortisone shots have had in my low back (L5/S1 disk herniation 2011). My ankles, wrists, shoulders, and knees are inflamed and starting to swell. Tingling/numbness of both hands and feet is becoming more prevalent. My arms have become so weak I can hardly hold up my phone anymore. One of my family members was going to fly me back to Chicago for medical treatment this Saturday, but as of now and with how things are going. I won’t be able to sit on a plane or travel for that matter. Most of the support I have gotten has been here, on The Mighty. It was the feedback people gave me on here that finally narrowed it down what it most likely is, Lyme Disease. I would like to thank you for those of you who have sent me hugs, positive thoughts, prayers. You have helped me get through one of the scariest times in my life.
#LymeDisease #BackPain

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🗓️Leap Day with #ChronicPain 🗓️

February 29th is a special day for so many reasons – Leapers get to celebrate their actual birthdays & then, of course, there are some romantic traditions too. Unfortunately, for those of us who live with Chronic Pain & Chronic Illness, Leap Years have a downside too because Leap Day means 24 extra hours of pain & other symptoms so amongst the mystery & magic of today please don’t forget to reach out to those who may be having a difficult time.

#ChronicPain #ChronicIllness #FunctionalNeurologicalDisorder #MentalHealth #MightyTogether #Fibromyalgia #ChronicFatigue #BackPain #Depression #Endometriosis #MightyMinute

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looking for advice!

hope i can find some advice on here!
any idea on what could be causing all this?

i started having symptoms in February 2023, my first symptom was Abdominal pain. (These aren’t all my symptoms but most of the ones that affect me the worst)
these are some of my current symptoms
abdominal pain (February 16) (achy,stabbing, sharp, cramps, /sometimes spasms)
temperatures/ fevers (99.0-102.1)
joint pain
heart palpitations when standing
dizziness
feeling extremely full after eating something small
nonexistent appetite at times
vomiting/nausea
upper stomach pain (achy/cramps)
abdominal pain getting worse after eating (about an hour after)
Upper stomach pain getting worse after eating (30-40 minutes)
(lower and middle)back pain (cramps and achy)
SOB when standing or sitting up too fast
lightheadedness when standing or sitting up too fast/ everything going black
stomach hurting/ feeling full after a sip of water
waking up with weak arms/legs
my hands feel like puffy and stiff when i wake up?
Salt cravings
Headaches upon waking up and last for a couple days
lower back pain/ back pain
shaking (my arm shakes a lot randomly)

i have been diagnosed with joint hypermobility, Fibromyalgia, and IBS.
possible EDS as well
i don’t fully believe the IBS because i continuously get undiagnosed and then diagnosed with it/ my doctors don’t agree on anything.
i was also diagnosed with somatic symptom disorder but have been cleared from that.
my psychiatrist says they don’t believe it’s “my mind causing my symptoms” because our “minds are powerful but not to this point”

i have seen a GI doctor, rheumatologist, and awaiting to see an endocrinologist.
i have had fevers since i got sick, i believe my highest one was 105F (this happened while i was in a helicopter being transported)
i had abnormal labs back in March 2023 and some of them are still a little strange.
(i think these are all?)
lab work:
low WBC
low MCH
high RDW
low neutrophils
low lymphocytes
high CRP
mildly elevated ESR
low Ferritin (has gone up now though)

i have had 4 CT scans (some doctor claimed he saw inflammation in my right side, however i have been told that is not true)
MRE
brain MRI
colonoscopy
Endoscopy
Ultrasounds
HIDA scan
i also have been tested for POTS but was told everything was normal and i will grow out of it

i am starting to feel like maybe everything is just in my head and i won’t ever find an answer 😞

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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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I'm new here!

Hi, my name is Mabka. I'm here because I've been living with chronic back pain and I realized last week that I may have fibromyalgia. My mom has it and I have a lot of the symptoms. A massage therapist recommended that I check out this site, and told me that it is hard to get a diagnosis for fibromyalgia. I've found that massage is the only thing that helps when the pain is really bad, and was only referred for massages last year. My insurance only covers 3 massages a year, so I can't even get that many massages. I am sick of dealing with back pain and need better solutions moving forward, and it's hard to get a diagnosis when it's really hard to get a doctor's appointment where I live.

#MightyTogether #Anxiety #Depression #PTSD #Migraine #Fibromyalgia

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