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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

(edited)
133 reactions 46 comments
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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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The Pain Within #ChronicPain #Endometriosis #MentalHealth #ChronicFatigue #BackPain

Living with endometriosis feels like being trapped in a storm of agony, where each day is a struggle to stay afloat amidst crashing waves of pain. It is like a relentless drumbeat, pounding away at my body, leaving me battered and bruised, both physically and emotionally.

Imagine your worst cramps multiplied tenfold, tearing through your abdomen like fiery tendrils of torment. It’s like a grip tightening around your insides, squeezing the air from your lungs with every breath. The pain is so intense that it feels like your entire body is on fire, with no relief in sight.

The pain of endometriosis is like nothing else. It is like having a monster inside you, tearing you apart from the inside out. For three weeks every month, it takes over my body, leaving me with just a few days to feel like myself again.

The pain starts in my abdomen and spreads to my stomach ,back, buttocks, and legs. It feels like my nerves are being attacked. Painkillers don’t help much, so I try hot packs and oils, but it’s still overwhelming. Sometimes, it is so bad that I can’t even find the words to describe it. It is like my body is betraying me.

The pain shoots down to my bottom, making everything hurt. I hide away in my room, trying to escape from it all. I feel hopeless and alone, wishing someone could understand what I’m going through. Even when I finally manage to sleep, the pain wakes me up again and again.

Endometriosis pain isn’t just a dull ache; it is more like intense, spasmodic cramps that feel like waves crashing over me. These spasms grip my muscles with such force that it’s hard to even catch my breath at times.

The pain isn't just superficial; it feels like it is deep within my body, involving my nerves and causing sharp, shooting sensations. This nerve pain amplifies the overall discomfort, making it even harder to bear.

One of the most distressing aspects of endometriosis is the rectal pain. It feels like a sharp, stabbing sensation that shoots from my ovaries to my rectal area, almost like a relentless assault on my entire pelvic region.

The pain doesn’t adhere to a schedule; it can strike at any moment, often catching me off guard. This unpredictability adds an extra layer of anxiety and makes it challenging to plan or enjoy activities without the constant fear of pain. The pain dictates my life, dictating what I can and can’t do on any given day. It disrupts my sleep, my work, and my relationships, making it difficult to maintain a sense of normalcy.

But it is not just the physical pain that weighs heavy; it’s the constant fear and uncertainty that comes with it. It is the dread of knowing that no matter what you do, the pain will always come back, lurking just around the corner, ready to pounce when you least expect it.

And then there is the emotional toll – the frustration, the anger, the despair of feeling like your body has betrayed you. It is the feeling of helplessness as you watch your life slip away, consumed by this invisible enemy that no one else seems to understand.

But amidst the darkness, there is a glimmer of hope – the unwavering strength of the human spirit. It is the resilience to keep fighting, to keep pushing forward, even when every fiber of your being screams to give up. It is the small moments of relief, the fleeting respites from the pain, that remind you that you are stronger than this, that you won’t let it break you.

So, yes, living with endometriosis is like navigating a minefield of pain and uncertainty. But it is also a testament to the power of the human spirit – the resilience to endure, the courage to persevere, and the hope for brighter days ahead.

I know I am not alone. I belong to the group of women facing excruciating and ongoing pain. I think all endo warriors will agree with me on the fact that we are not getting the support we need from society or the government because our condition isn’t visible. We want to shout out that endometriosis is making our lives worse. It is like we are invisible, disabled, and left feeling helpless and hopeless, just waiting for things to change so we can juggle our health and careers. May this description serve as a shedding light on the often misunderstood and excruciating reality of endometriosis pain.
#ChronicPain #Endometriosis #ChronicFatigue #BackPain #Disability

(edited)
15 reactions 3 comments
Post

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 😞

(edited)
17 reactions 24 comments
Post

Thank you all for your kind words & support! I felt it… when I needed every word of it🙏💜🫶🤗👍Unfortunately that last post was just the BEGINNING…

…of what I am calling my “ordeal” here at the hospital (yes, I’m still here🥲🥲🥲) and things went downhill and got much worse after I got that room I was so excited about…in a really ugly and scary experience that led to my being rushed to the ICU in the wee hours. I will post again soon with a full update of what has happened in the 6 days since I wrote that first post. Let's just say while being in the ICU I dealt with major levels of pain, living in discomfort 24/7 stuck in a bed that began to feel like a cage…with bleeding in my chest that was bad enough that I ended up needing SIX transfusions of blood and was a little touch and go in some ways for a day or so.

They eventually did a procedure for me and the doc solved the problem, Then they monitored me for a few days and so far so good. I got to drink my first water after 3 days, and started a liquid diet the next day (vanilla ice and jello never tasted so good!) I'm now well enough that they transferred me out of the ICU two days ago and I am now in this room, actually using a bathroom for the first time in 4 days, had my first real food in a great meal that included fettuccine alfredo & egg salad and I am walking around on my own (with my trusty cane and under the nurses’ watchful eyes)

I will share all the gory details about what got me to the ICU and what I went through there once settled at home in a few days. In the meantime I thought I'd share a happy moment when I wrote after I got that room I mentioned at the end of my last post (the calm before the storm) :

“Great news… I have a happy update to share- the excruciating back pain and chest pain are completely gone😁👍👌🙏I was told the pancreatitis was caused because I had a Gallbladder Attack and the toughest pain was when I passed the gallstones. The pancreatitis stopped thanks to blood thinners and lots of fluids (that I drank through a straw…in my arm😉. Now I’m getting a lot of exercise walking my IV stand up and down the halls of this floor visiting the loo…IV’s make me pee much more than I remembered😂) I began to catch up on all of my colorful candy given to me in a small plastic shot glass. Doc said the fluids and bedrest helped…even if only 5 hours because I have had numerous kinds of visitors… ok, it was staff here bothering me for vitals, meds, blood work and a pharmacist - no party here☹️

Yet I have actually been much more social here than most of days isolated at home and I have focused on what Dad modeled for me when I was a kid and he was in hospitals: be positive and upbeat, even when it has been totally paradoxical to how I feel with my physical pain inside, and even when it was the 3rd time they got my meds totally wrong or my pain spiked at 9+! I always make a special effort to try to make people laugh, and laugh at myself… even when it hurts to breathe.

I am so excited that I have a private room now, very secluded down at the end of the hall, way around the corner from the nurses station, really quiet (well not now- I’m actually listening to a favorite playlist on my iPAD cranked pretty loud!) I even have taken off my migraine glasses after wearing them for pretty much 48 hours straight☹️Amazingly I survived this whole time with no migraines🙏👍☀️The first thing I did when I got up here in the middle of the day was to close the door and turn the lights off! I'm smiling with my feet up in my hospital bed listening to the new Billy Joel song on loop (It’s a beautiful ballad and although it made me feel lonely and very single the first few times I listened to it I then had the epiphany that for me it was about shifting to love MYSELF more)

I will be able to sleep well tonight with that comforting and empowering feeling (and the minor fact that I haven't slept in two days and it will be quiet and dark here as opposed to the insanity of the ER with bright lights and all the types of cacophony that was all around me!”

….or so I thought. Just hours after that my journey started in its next phase…

#MentalHealth #depression #anxiety #socialanxiety #disability #chronicpain #chronicillness #selflove #selfcare #bipolardisorder #bipolardepression #covid19 #parkinsons # concussion #braininjury #migraine #headache #backpain #neck pain #physicaltherapy #hivaids #ptsd #stigma #peripheralneuropathy #addiction #addictionrecovery #ifyoufeelhopeless #hope #checkinwithme #insidethemighty #mightytogether #distractme

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2024...you're kinda kicking my butt here lol. Anyone else on their 2nd or 3rd antibiotic already? Attempting to 'push through'?

We're in the 2nd month of 2024 and I'm on my 2nd antibiotic 🙃

(there was a high chance it would've actually been be my 3rd lol. Thankfully my asthma fixed up)

Anyone else feel...almost punished by the universe lol?

I barely go out (part fault of chronic conditions, part agoraphobia tendencies) and yet I still get sick, sick 🤔

I'm told by so many to 'push through', but I am pushing.

Everytime I get to the toilet in time. The times I make it to work. Remembering key dates. Having a bath. Drinking enough liquids. Replying to that text...

To all those pushing already by just existing: I see you and I am one of you. It isn't easy, but we're really trying our best💜

#ChronicPain #AgoraphobiaWithoutHistoryOfPanicDisorder #Agoraphobia #MentalHealth #ChronicFatigue #Fibromyalgia #BackPain #Asthma #Anxiety #Depression #FunctionalNeurologicalDisorder #IrritableBowelSyndromeIBS #Jointpain #AuditoryProcessingDisorder

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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

38 reactions 13 comments