Degenerative Disc Disease

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Degenerative Disc Disease
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Medical PTSD

In 2021, I went to an urgent care, telling them "this is the sickest I have ever been". I was told to get a rapid covid test and return in 3 hours which became 3 days because a doctor never officially read the same result I had in MyChart. Finally get in and am told I have a staph infection and given antibiotics, and told to return in 48 hours if there was no change. There wasn't. I went to the ER and they did a lot of labs. Ultimately sent me home with the admonition to see a hematologist. I happened to have a hematologist appointment 5 days later, but, if I hadn't it's pretty much impossible to get a new patient appointment in a few days' time. By the time that day rolled around, I was incontinent, vomiting, running a 102.0.0.5 fever. I called the doctor's office and asked to speak to the doctor and explained my situation. Because they use a different charting system, this was all news to her. She told me to go to a specific ER where she has privileges. I got there and was thrombocytopenid enough to be transfused with platelets. I was taken on 3 hour ambulance ride to 'the only available bed'. When I got to the new hospital I was gray, except for where I was bleeding around my mouth and eyes. Early the next morning a phlebotomist came to draw my blood with a pile of vials and bottles. Jokingly I asked if they were all for me. I was hungry but was not allowed to eat because I was NPO. About lunchtime I was wheeled to a CT machine for a guided bone marrow biopsy. The only thing they told me is I was pancytopenic (too low platelets, red blood cells and white blood cells), I was given more platelets, meds and antibiotics over the next 7 days and sent home. I still had no idea why this happened. A week later I saw my primary on video. Without discussing a diagnosis she told me to look up myelodysplastic syndrome. I looked it up and it sounded like cancer. I was, after all, on an oncology ward when I was in the hospital. Nobody said I had cancer or MDS nobody really said I had anything specific. I wanted answers and managed to get the bone marrow biopsy report and there was genetic damage in the DNA. My primary referred me to oncology locally. They said it was likely due to toxicity from taking methotrexate for alopecia. I wasn't so sure because I had no methotrexate in my system for 2.0.0.5 months. The life/death cycle of red blood cells is around 90 days but the white and platelets are much shorter so how is this drug affecting me? I don't know and nobody else does. A repeat biopsy 9 months later was clear. My blood recovered over the last 3.0.0.5 years.

Something that has plagued me for 30 years is neuropathy and weakness in my hands. I was tested over and over for diabetes and I did not have it. Somehow the doctors decided, since they had no answers, it was all in my head, and gave me psych meds (!). One doctor ordered a cervical MRI and I had degenerative disc disease that was slightly touching my spinal cord. I was told repeatedly this could not be the cause. I have had emg after emg, x-rays, ct scans, mri's, I'm surprised I don't glow in the dark!! Every neurologist has told me it's diabetic neuropathy. I guess the neuropathy started before the hyperglycemia that the $@!% psych meds created. Who am I to know? I'm just the patient.

I ask for a new neurology appointment at a different hospital. I was directed to the spinal clinic who told me the same %@@! thing - it's diabetic neuropathy. He said I needed a new emg and physical therapy, neither of which I can refer myself to and he did nothing to further that goal. I finally go to neurology and after looking at the same MRI the last neurosurgeon looked at said I needed surgery to relieve compression on my spine. Back to the spinal clinic but a different doctor, and he said I most definitely need surgery to prevent further damage. In the year between surgeon 1 and surgeon 2 I have lost so much function in my hands, I can not longer do anything detailed, play music and often I cannot write my name.

My surgery is scheduled in 4 months from now. I cant help but think that that loss of function could have been prevented but when one idiot doctor writes "diabetic polyneuropathy" on your chart, it becomes the diagnosis, regardless of history, so the first surgeon just saw that and blew me off.

These two examples are far from the only times I have had care delayed, denied or been blown off by physicians.

So now, every interaction I have with doctors is met with suspicion. Now a new doctor has to prove their trustworthiness. This is not a conscious decision - this is medical PTSD.

It is absurd that a condition has to get irreparably bad for a doctor to take action. I don't think, in schools of medicine, they discuss things like medical ptsd. Often, particularly surgeons, they think of the patient as the disease, not a person.

I wish I knew how to change that about medicine, but, I wouldn't know where to start. It seems explaining this to other doctors falls on deaf ears.

#medical #PTSD

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Poet of Pain

I am me.
I am pain.
In America,
I’m a stain.

I’m the problem
Cause I am sick
I didn’t ask for this,
it’s not a trick.

Walking thru quicksand
with weak legs and arms
So intense it takes my breath away,
I stay so strong

I am alone. Nobody cares.
You keep telling me my pain isn’t there.

I can’t take it.
I’m not dumb.
I’m paying for other people’s problems

I get the epidemic,
But this is insane!
I am human.
I have pain.

My spine is gonna be the death of me.
Why won’t these doctors let me be?
Pain is hard, it’s all I see.
Please don’t kill the rest of me.

Pain stole my job,
Pain then it stole my dreams.
It stole making love,
even that hurts me.

Why can’t they see me,
Why don’t they care?
Read my MRI,
measure it there!

I feel the fire,
what lives inside flames.
My child sees this,
who do you think he blames?

You can’t fix me,
Everything I’ve tried.
Now taking my meds,
Would you rather I died?

I wish they could feel how much it hurts to be me
I don’t matter, I want to be free.
No one hates this more than me.

Those pills help me
They’re all I have left
Why are you killing me?
I wish for death.

A broken body.
A spine that’s failed.
Oh, you saw my med list…
Discrimination prevails.

Please don’t take my pills away.
You can count them everyday.
You can test me as you wish.
Please don’t treat me like I don’t exist.

So sharp it steals the breath away,
I will smile,
but it won’t stay,
Pain takes my happy away.

Please don’t take what works for me.
For the sake of my sanity,
I am slowly being driven insane…
What do you think this does to my brain?

I am me.
I am in pain.
You can’t fix me.
What will remain?

I can’t do this.
It’s getting too hard.
I am a problem,
you want to discard.

When I can’t go out,
no sun in my day.
Debilitating pain,
Those pills are all that can take it away.

The pain I feel is real to me,
for 13 years on disability.

It stole my youth.
It stole my job.
I’m legally disabled.
Not a wack job.

I’ve been a good patient,
I don’t make a scene.
I don’t give you any reason
to think I’m not clean.

What do you think happens at the ER?
Cold and rude, absolute disregard.
I’m the problem because I’m there.
I’m not asking for drugs,
I praying they’ll care.

Imagine being me,
scared and alone,
If Tylenol worked,
I’d be at home.

I lay there anyway.
I can’t take anymore.
I’m belittled and labeled,
my tears hit the floor

Why do you think people are dying?
In pain and alone
Alone in pain crying

The fentanyl crisis will take me away
Please don’t take my meds away
Chronic pain
Suicide.

Pain like this can eats at your soul
My narcotics,
I’ve clearly controlled.
I don’t want to die, don’t leave me alone…

Treated like a criminal,
When I am sick..
This is something I didn’t pick

I’m not a criminal
This is too hard.
Opiates work.
Please don’t discard.

One article from the CDC
Ever since then,
I never feel seen.
I deserve to live life with quality
Discriminated at my hometown pharmacy

I am sick, so I’m the problem.
Opiates work.
How old is Laudanum?

Please just please, will you help me?
I’m so much more than my MME
I’m more than orange bottles,
I am me.

I’m more than orange bottles
I am me.

I’m more than orange bottles
I’m more than your orange bottles

#Migraine #backpain #opioidusedisorder #chronicillness #DegenerativeDiscDisease #sciatica #arthritis #PosturalOrthostaticTachycardiaSyndrome #Depression #HashimotosThyroiditis #Depression #SpinalStenosis

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Relationships & defeats where do we discuss that?

Hello, I’m new here and I’m dealing with some really rough relationship issues that I feel have a lot to do with my health. Where do people discuss these challenges on The Mighty? I will admit that tim struggling with the relationship and it’s a 10 year relationship and we love each other very deeply yeah I feel like my medical condition. Makes it too scary or risky for someone to take a chance to be with me based on the numerous systems have been affected by my systemic connected tissue and auto immune disorder. The person I was dating for 10 years that we’re about to be engaged is a physician had a kidney transplant and I think understood too well how much risk I’ve had recently with several near death medical crisis according to my present medical history, my trajectory is not going upward at all. In fact, my immune system has attack more organs systems and now I’m not a surgical candidate, major spinal deformity or hammertoe/bone spur injury.
Im still here. My bf broke up w me. We were supposed to get engaged shortly. Hard week. I think it’s too late I missed my chance. I was in a to me and my kids which took me 15 yr marriage that was destructive to me and my kids. It took me ten years to get a divorce. I’m still dealing with the fallout from that. Dating# #mixedconectivetissuedisease #PrimaryImmunodeficiency #DemyelinatingNeuropathies #MultipleSclerosis #CrohnsDisease #AutoimmuneDisorder
#Epilepsy #Arthritis #DegenerativeDiscDisease #ChronicFatigueSyndrome #Arthritis #DiffuseIdiopathicSkeletalHyperostosis #seronegativearthritis #Scleroderma #Endometriosis #Gastroparesis #ChronicVestibularMigraine #Migraine

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Coping skills #MentalHealth

When I’m dealing with a bunch of stuff and my mind is going round and round, I just want to cry out. I feel angry and frustrated and I don’t want to talk to anyone. I grab my sweater and headphones and go for a walk. I have degenerative disc disease, sciatica left and right sides, arthritis, fibromyalgia,,,,🙄 but when I’m stuck in my head and feeling mentally exhausted, taking a short walk helps. I take deep breaths, touch the leaves 🍁 and feel the cool air on my face. Instead of thinking about hardships and negativity, for those few moments, I try and enjoy the fact that I’m blessed to be able to take that walk, see the changing seasons in the trees, feel that cool air in my lungs. Sometimes it’s difficult to see beauty in our lives because of our illnesses, find something beautiful in your daily life that can bring you peace, even if it’s only for a short walk.

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- A Healing Journey (Actual progress!)

Dealing with Ehlers-Danlos Syndrome (EDS) and other chronic muscle and joint conditions has taught me a lot about how the body works under stress. One key takeaway is that when muscles are overworked or injured, they tighten up as a defense mechanism. This process takes up a lot of energy, so to conserve resources, the body smartly creates scar tissue to bind everything in place. It’s a clever form of resource management, designed to prioritize immediate survival needs. But the trade-off? Long-term function gets compromised.

One of the most important things I’ve learned is that getting those tight, restricted tissues moving again is the critical first step in recovery. Over the past decade, tools like foam rollers and massage balls have become mainstream. But while they’re great for some people, they don’t always work for bendy bodies. Our muscles overlap differently, and areas like joints require special care. Plus, when you add issues like Mast Cell Activation Syndrome (MCAS), dysautonomia, and fragile lymphatic systems into the mix, direct compression often does more harm than good for many of us.

For people with hypermobility, it’s all about balancing the release of bound-up tissue and restoring healthy function—without irritating the body further. Once the soft tissues regain mobility and inflammation calms down, the body stops compensating and is ready to rebuild strength and proper function and with even better body-mind awareness. Proprioception (the body's ability to know where it is in space, e.g. how you can touch your nose with your eyes closed) can improve, and daily tasks can start to become less burdensome.

It's all incremental though, hypermobile bodies deserve and need gentle progress.

I'm so thankful to the Muscle and Joint Clinic for their diverse and gentle approach to healing. Focused shockwave therapy brings instant relief to my tired muscles and red light therapy down regulates my nervous system. Getting myself into the rest and digest mode has been so vital to my healing.

While my symptoms can flare up in sudden and unpredictable ways, my recovery time is dramatically shortened. I most recently had a migraine with a brainstem aura that had me 1. worried I was having a stroke and 2. asleep for close to twelve hours and sensitive to light for more. I was worried about what that much bed rest would do to my recovery. Luckily, I have some more wiggle room when it comes to full bed rest. My strength and function have been rebuilt enough that I get a day off from physical therapy. A year ago, one day off would cause a cascade of debilitating subluxations and autonomic dysfunction. So while these days feel scary and like there's no end in sight, I'm sitting at my desk two days later amazed that I'm back at 80% function, and not the 20% I would be a year ago.

I’ve focused here on the physical aspects, there's also the emotional layers of healing. Underneath a lot of this body pain, there's definitely the younger version of me, ignored by doctors, teachers, and even childhood friends. I also have to look after her and remind her to not minimize the pain, to acknowledge it, talk about it, and seek the treatment I know I deserve.

#EhlersDanlosSociety #EDS #POTS #HypermobilitySyndrome #DegenerativeDiscDisease #AutonomicDysfunction #ADHD #neuro #Fibromyalgia #MastCellActivationDisorder #MentalHealth

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What I REALLY wanted to say

I read Brianna’s story about when friends get tired of hearing about your chronic illness, and then a “friend “ texted me and asked how I’m feeling and I said “the same”… but this is
What I really wanted to say…

l have better days and then really bad days where I can’t do anything at all because the pain is so bad or the symptoms are in full force- it depends on the day.
It’s like one day I can pick my leg up instead of dragging it and then the next day I can’t. The pain is horrible and constant- the muscle spasms are constant and my neurologist is talking about a pump for the muscle relaxer medication.
I’m learning a lot about syringomyelia though and trying not to get depressed or discouraged but it’s really hard because it’s a very rare and Besides doctors appointments or being in the hospital I haven’t been out of the house since august 13. I literally can’t go anywhere because I can’t walk. My right leg doesn’t work-I have to drag it more or less. A friend of ours offered a wheelchair but dave hasn’t gone and picked it up.

I have a form for the Secretary of State to get a handicapped placard for parking but I have to find out how to get it. the police department here in WC doesn’t do them but —city—- does but i think i have to be a —-city—- resident. I don’t know how to get it.

Since it ls -SPORT- season everyone is busy doing that and with everything that happened to- husbands NAME- he’s not much help which i totally understand. He gets up at 3:30 in the morning every day. Then goes to SPORT practice right after work and comes home and eats dinner and goes to bed at 8:30. On Saturday they have practice and go over film and he and YOUNGEST SON get home at 12:30 then he takes DAUGHTER to the grocery stores and there’s a few hours but he has to do stuff around the house like the garden, yard etc. they do a zoom meeting on Sundays for SPORT too so literally he has no time and I understand. This is what life is always like due SPORT season but usually I’m included in it. I want to go to the games but can’t. It was such a big part of my life and now that’s gone too.

Someone literally told me if I imagine myself walking my brain will make it happen- Nobody understands or gets this. If I had a stroke or broken leg I think people would understand it better but because it’s so rare some doctors don’t even understand it. My primary care doctor said “but aren’t you glad it’s not MS?” Well of course but this is an awful thing in and of itself.

In addition to my degenerative disc disease (I have multiple herniated and bulging discs in my neck and lower back which is painful and causes sciatica in my legs) and I have multiple hemangiomas (blood vessel filled benign tumors on the spine) in my neck, thoracic and lumbar spine which can cause pain too- and now the Syrinx is located at C7 to T1, it’s 5mm wide (your spinal cord is around 6mm wide) so it’s blocking the normal flow of cerebral spinal fluid which is what is causing all the symptoms. (Pain, numbness and pins & needles that travels over my whole body: arms legs chest face back etc , the inability to use my right leg, incontinence and constipation, migraines, dizziness and vertigo,

There’s literally nothing they can do for the syrinx in my spinal cord other than treat the symptoms. It is interrupting the flow of cerebral spinal fluid and also putting pressure on my spinal cord from the inside out - and causing all of my symptoms. I may have had it since 2021 based on MRIs but it was much smaller and since recently it’s swelled and grown in size (see the MRI image) .

In some cases they can put a shunt in to drain the fluid but it literally fills right back up so they drain the spinal fluid into your body- but my team at HOSPITAL NAME said I’m not a candidate for that because of my degenerative disc disease and in some cases it doesn’t help or makes symptoms worse- it’s not a very successful thing either- sometimes they can do a “decompression “ surgery but they usually do it only for syringes that are really big - but they want to monitor it to be sure it doesn’t grow bigger since it has recently swelled and grown. Sometimes syrinxes have a rapid onset and growth period. They keep asking me if I’ve had a recent trauma like falling down stairs etc and the only thing that I can think of is just repetitive motion at work that one day with all the customers in a row but other than that … nothing has happened. They said that could have flared it up but I truly thought at the time it was my degenerative disc disease and associated symptoms.

I want to use my neurologist appointment in October as a second opinion- and I found a doctor in TOWN NAME that has experience with syringomyelia
but his wait list of 12-18 months out.

As for work- I have no idea if I qualify for social security, I haven’t filed yet for it but I’d rather make money other ways- and not depend on that- sooo…
I’ve been doing BUSINESS NAME because it’s all online and I am trying to keep it going because it’s the only way for me to make money. I’m also joining some brands to be an affiliate/ambassador trying to earn commission on sales (also since it’s online) in a nutshell , I’m trying to make the best out of a crappy situation. It’s just hard because one day I might feel ok like I can manage the pain and the other symptoms and the next day might be awful where all I can do is lay on the couch because of the pain or a migraine or can’t feel my arm or hands. Every day is different and I have no idea until I wake up what it’s going to be like.

I’m really sorry to dump all that on you but I’m so not in a good place at all. I’m not saying it to be a “poor me” person but honestly my life sucks right now.
#Syrinx #Syringomyelia #chromic #PainManagement #Loneliness #Depression #cps #EhlersDanlosSyndrome #DegenerativeDiscDisease #DDD #spine #Chiari #ArnoldChiariMalformation #myelin

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Is pain your “old friend “?

I have been struggling with Pain for many years. There is a saying that that Pain is an old friend ,,,but I don’t know if I would call Pain my “friend”. Friends are nice, they like to do fun things with you, they like to celebrate accomplishments and they support you when your down. Pain does none of those things! When Pain is around,,,she’s not nice at all! She doesn’t like doing fun stuff nor celebrate, and when I need support,,,she kicks me while I’m down! So yeah, I debunk that saying. What do you call your Pain?
#Arthritis #DegenerativeDiscDisease #Fibromyalgia #ChronicMigraines #IBS #ChronicFatigue #Anxiety #Depression #MentalHealth #BackPain #ChronicPain #ChronicIllness #InflammatoryArthritis #chronicinflamation #chronictendonitis #Bursitis

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I'm new here

Currently I am on LOA and getting ready to undergo my second back surgery. I have suffered from chronic pain for years. And am I EVER worried about becoming addicted to pain meds again. That was one wild ride I don't plan on standing in line again for!! #DegenerativeDiscDisease #ChronicPain #AddictionRecovery #Backsurgery

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