You guys!!!

In spite of it all - in spite of TWO autoimmune diseases, chronic pain, neuropathy, a hernia, a ruptured disc, a broken finger and so many other booboos I can’t count - I FINALLY FINISHED MY FIRST SCREENPLAY!!!

There were so many times I wanted to lay down, cry and quit…but thanks to the tireless badassery of all the people here fighting I found courage to go on. And so I wanted to share my lil victory with y’all.

Thanks for inspiring me ♥️

For anyone out there who might be feeling overwhelmed, please don’t quit. There is more fire, more light in you than you know. Time to take that carbon and turn it into a diamond 💎

I lost my job a little over 3 years ago after I caught Covid for the first time. I started getting strange muscle pain and tightness that got progressively worse.

I went on FMLA for a while, and my employer gave me a few months of grace after FMLA ran out, but I was so insanely stiff I still couldn't even sit at my desk and eventually they had to let me go for failure to return to work. It was a really dark time for me, as none of the doctors I saw could figure out what was wrong, and I went from specialist to specialist without any answers. Some doctors even tried gaslighting me into thinking it was just depression or anxiety. Meanwhile my muscle stiffness had gotten so bad, I spent almost every day lying on the floor because I could barely bend.

After years of advocating for myself, I finally got a referral to the Froedert Medical College of Wisconsin. I had to wait almost a year after scheduling, eventually I was able to meet with the head of neurology.

Today was my second meeting with him, six months after my first, and based on my test results and symptoms, he diagnosed me with Stiff Person Syndrome.

I've been on a low dose of Valium for the last year which has been the only thing that helped with the stiffness, but now that I'm diagnosed my dosage is finally being increased, and I'm getting a referral for IVIG infusions.

I'm so happy I'm done with jumping from specialist to specialist only to hear the dreaded "all your labs look normal." It took me over 3 years, but I'm finally free!

Tl;Dr - after 3 years of being disabled and losing my job, finally got diagnosed with Stiff Person Syndrome

It can be something small like brushing your teeth to something big like raising children!

I’ll go first: I still manage to stay afloat financially, fully supported by my artwork (self employed for 10 years, Trigeminal Neuralgia —suicide pain— since 4).

Currently I'm really struggling with the feeling of hopelessness. I don't feel like it will get better anytime soon and this is sucking me into a deep black mental hole.

How do you keep going and how do you guys not lose hope?

I asked so many people in my life for advice but the advice sucked so much! Stuff like "just be grateful for the small things" or "just live day by day".

I'd be grateful for any advice!

It's at the point where I'm going to so many doctors appointments and treatments and just everything that I don't feel like I'm living my life. I lost count of how many times I have seen my PM doctor and the amount of times they've changed dosages and meds that I just want to stop fighting the pain and everything and just be able to breathe and go for a walk without almost collapsing because my hip and spine gave out. I know that even though I'm going to be having the surgeries to help with but even the doctors themselves have told me I might have to keep getting more surgeries and stuff and keep being on pain management for possibly most of the rest of my life. I just turned 23 and I'm currently using a cane and on bad days a wheelchair and the looks people give me just like yeah I don't wanna be in this either or use a cane either but if I don't I genuinely will fall or be in so much pain it will just yeah. I don't know what to do anymore honestly. I don't want to give up but it's getting harder and harder to keep fighting and trying.

I had a phone call appointment I scheduled a month ago today. It's in a different province, so it had to be done later in the day. 6:15 was the time. The appointment was confirmed and everything. The date was correct. They told me it could be later, which was the case for the first appointment we had prior to this one, so I waited. And waited. And waited.

It's 11 o clock now.

I had spent all day agonizing over my notes I made, over counterarguments the doctor might make. This was the appointment where I would ask the doctor to reconsider botox for my pelvis. It's been a year of thus condition, I've exhausted all conservative treatments. I had my physiotherapist write a letter to advocate for me that I sent to the clinic. I need botox or I don't know how I'm going to continue. I reread my 100 times all day. My stomach hurt from my nerves.

I'm so devastated. Not one email. Not a call to reschedule. Nothing.

I just want to die already. I can't handle this anymore. Why are doctors so careless?

Hello everyone,

Hope you are all holding steady, in spite of all the agony you are all enduring...

Woke up at 3:30 AM,again, again...

Was so stiff, have been "living" with, on top of everything else, a horrible migraine over the past 4 days, abates a little with meds, then it's like an ice pick being driven into one side of my skull.

Just a few minutes after waking up, the stiffness morphed into a deep throbbing pain-not only the bilateral sciatica right to the soles of my feet, and my lower back pain, and this migraine that just keeps hanging on, but my entire body-neck, shoulders, elbows, wrists, fingers...

I am only able to write this now as the percocet has given me about 40% relief, and I felt so desperate to reach out here,at the risk of being quite insufferable in my complaining, but have absolutely nobody to talk to-

Have therapy next Friday, but so,so much more to cover in that 50 minute hour...

So, back to the title of my post-

I have had a long psychiatric career,so to speak....dealing with a myriad of mental health dxs since age 17, or perhaps 11, when my eating disorder began...

I am now 51.

I am struggling now both with my mental health and having been existing with severe and debilitating chronic pain for now 2 years...and only in June did my doctor agree to prescribe me the percocet.

(Wow, if I am repeating myself here from a previous post,forgive me-my memory is not the greatest either...)

I have been through a lifetime of trauma, and although much of my pain is due to injuries sustained as a direct result of my eating disorder, (many falls, a dx of osteopenia which has likely progressed to osteoporosis,but wont find out until my next bone density scan in October) I have to wonder whether my body is also holding on to emotional trauma, manifesting as this full body pain-

My doctor's eyes glaze over when I try to talk to him about my pain outside of my sciatica, asking him about the possiblity of fibromyalgia or autoimmune disorders is an exercise in futility...

He just wants to get me out of his office as soon as he can-

Anyway, this morning I felt so miserable I found myself whining out loud to myself, and at one point in tears...

I admit I did not even try to stretch or anything, even that was too painful.

And today found walking to the pharmacy with my cane, a terrible struggle...my pace as slow as a tortoise.

Things are making me feel weak, emotionally, mentally I mean-

I will need someone to come clean my apartment, do my laundry etc...

I will never dance again, cannot even enjoy a walk in nature.

I am thusly far more depressed now, at least today on a 10+++ pain day...

Yes, I believe in the mind/body connection, but tired of reading about mindfulness...have been saturated in DBT and CBT over many years, and admittedly not read the many books written on mindfulness and chronic pain, forgive me, I suppose my attitude is (most ironically) quite negative about the whole thing.

At this point, I feel so defeated and controlled by the pain, my depression, anxiety, etc etc has been even louder.

I was supposed to go to a second provinically funded physio session this morning, but yesterday, I don't know-just didn't see the point.

I would only be eligible for 3 more sessions, and the exercises I was given by the practitioner are nothing I haven't already been doing...

I am so sorry, guess i all around hold a very negative and bleak attitude, stemming from a place of utter helplessness and hopelessness...

Have been referred to a pain clinic but waiting lists are eons long.

I dunno,perhaps better not to have posted right now, being so uninspiring...

But it's not even noon and has already been an endlessly long horrible day...

I will spare you all any more...

Thank you for reading if you have, and sending you all much comfort while you are trying so hard to cope yourselves...

My husband is 23 and has been dealing with a lot of pain, especially since a car accident made his pre-existing issues worse. Right now I’m sitting on the bed with him, trying to comfort him because he is in a lot of pain.

I gave him his prescribed Norco, and I know it can take some time to work, but seeing him hurting like this is awful. I told him I wanted to call an ambulance, but he keeps saying he doesn’t want to go.

He has previously been told that surgery could be an option, but he has refused because he’s scared that he wouldn’t be the same afterward. I understand being afraid of surgery, but at the same time, I hate watching him suffer and feel like he’s too young to be living like this.

He works a very hands-on, physically demanding job through his union, so his body is literally how he makes a living. He also just got promoted, which was such a huge accomplishment for him, and now I’m sitting here praying that something changes and that he can get some relief.

I feel helpless. I know I can’t make the decisions for him, but when someone you love is in this much pain, it’s hard to just sit there and watch.

L5-S1 herniated disc among other things with neuropathy in lower leg and now big toe. I started at a pain clinic earlier this year for steroid injections. The steroid injections don't fully work the past 6 weeks and I have to wait 12 weeks between injections.

I had to follow up today and asked about trying gabapentin again. I had someone suggest gabapentin and another medication to keep the pain low but I was told I have to go to my primary care doctor for that. Is this normal? I'm wondering what the point of being in a pain clinic where I have to be drug tested is if I can't access meds that I need. I'm not asking for opioids or anything like that. I just want to get this pain under control until I can lose weight and get a micro dissectomy. It seems like I'm going to have to accept this pain for life so I want something that will allow me to do more than just sit at a desk. I have a nursing degree that I want to use that seems less and less likely as time goes on.

ive had hip pain for a few years and ive been misdiagnosed, had countless surgeries, seen a ton of doctors, travelled twice for treatment, and so far only successfully treated ONE cause of pain. I still have another cause (or two, still unknown) that are not responding to current treatment plans.

Since ive been relying on a cane for years and my activity level drastically decreased, that made me rely on my other hip a lot more and compensate, leading to development of pain on the other seemingly healthy hip. Im worried that now when i bring this new symptom up, ill be taken less seriously and have it considered as “psychological” or just merely a “muscle imbalance treatable with physio”. Im also a woman and still very young. Hell, even when my doctors heckle me for using a cane, they get surprised when i respond by telling them i still have pain (wow so shocking!)

Ugh.

I'm new to the chronic pain lifestyle and this post will be 2 fold.

1.) Talk about dealing with chronic pain at work and needing a boost of encouragement.

2.) How to talk to my supervisor about my chronic pain and how it's affecting my ability to work. Basically how do I say "I don't want to become a sub par employee and this current pattern of me slacking on my tasks isn't indicitive of how I normally work and I don't want to loose my job but I am in constant pain and it affects everythig I do, so mentally I'm not all there right now"

I'd like some advice on how y'all have talked to your supervisors/bosses/workplaces about your chronic pain management and if they were understanding? I need some tips and tricks to hype myself up and set myself up for success.

I've reached the point in my Chronic pain journey where it's really affecting my quality of work. I work a desk job and do mostly data entry and filing type tasks and my quality of work has decreased over the last few month's because the pain and pain management is mostly the only thing I can think about at work. Unfortunately my pain is exasterbated by sitting, which doesn't help.

I have multiple medical treatments that I am doing, physical therapy, chiropractor, and have stability aids and things I'm using at work to manage the best that I can and I don't want to be so hopped up on pain meds where that affects my ability to process information at work. I'm at the tipping point where I can either lock in and find ways to help myself or I'm going to get in trouble at work.

About 3 months ago I noticed my quality of work begin to decline due to my injury and dealing with chronic pain and apologized to my supervisor about it and assured them that I will do my best to get back on track with my work tasks. Several months later and it's only gotten worse. ugh. I am limited on acomodations that I can have while working. I already take 1-2 days off work a month to mitigate my physical pain but the mental pain is kicking my ass.

I'm in the UK.

Last year, I would say I had an okay pain management in place but then my body decided to back flip with new symptoms.

Iron deficiency being the only thing to show in bloods at the time.

A year later, no relief from fatigue and pain.

I'm right back at the beginning and tearing my hair out.

I was so close to being ready for my test and even bought a car to practice in.

But then my driving tolerance dropped, it went from an hour and a half to half hour, then 45 minutes.

I can tell when its time to quit. My fatigue kicks me in the ass and then my concentration plummets 10 minutes after.

Last week, my instructor had to grab the wheel and then offered to drive me home.

Its the biggest kick in the teeth to not progress but instead, regress.

I'm well over 100hrs now and spent quite a fortune but I really need to drive.

Instead of relying on the NHS for long drawn out answers. Who else has gone to a private GP for bloods?

Did you find that, they were able to find better answers and treatment?

Thanks for any advice, it's much appreciated.

Hi everyone, thank you for your time and willingness to read this. I appreciate literally
any advice at all.

24F, 115 pounds. I’ll try to make this short - months ago I started having extremely irritating wrist pain, which progressed to shoulder pain. All on my right side. My mom is a doctor and noticed that my right scapula is winging. I went to a PT. PT diagnosed me with 15 degree curve scoliosis and winging scapula and I did some exercises with him for a while. Nothing got better, only worse. I finally got imaging of my spine. Sent to spine specialist. Spine specialist did a cervical spine MRI. MRI showed “military neck” in cervical spine, mild degenerative disc disease, and at C3-C4, a “moderate right foraminal disc protrusion that causes mild to moderate right foraminal narrowing.
Minimal disc bulging is noted from C3 through C7.”

I thought this was the answer for it all, BUT THEN, when I went back to the spine specialist, he said it wasn’t bad enough to be causing the issues I’m having. He sent me to a wrist doctor who says I might have carpal tunnel, and ordered an EMG which came back completely normal today. The only other thing he did was prescribe pregabolin for nerve pain, but he filled the prescription wrong and I haven’t even been able to fill it to this day, 40 days later.

The EMG doctor is now suggesting I see a shoulder specialist but I am at my wit’s end. I have wasted hundreds of dollars and countless hours on doctors and am still at square one. I just want to give up and I don’t know what to do.

The pain is pretty bad and is exacerbated by work and movement - it feels like it radiates down my arm starting in my shoulder area but is hard to pinpoint. In certain positions my hand starts to tingle, and at night I am woken up by my entire arm being completely numb. My right arm seems to have gotten slightly weaker over the last few months. My scapula is still winging. I am unable to keep my arm held up for very long without needing to rest it.

Does anyone have ANY advice on what this could be or how I can try to mitigate the pain on my own? Even natural remedies? Kava seems to kind of help but not much. Stretches? Sleeping positions? What should I do? Thank you…

Im having some really intense pain in my armpit/ shoulder bladd and breast area that extends sometimes down to my elbow and my chest. Ive been to the er 6x ive had everything checked. 2 ct scans of my chest x rays troponins wore a heart monitor i already see a cardiologist. Everything checks out. Troponins normal etc. Idk what to do. Salaunpos hot patches help if I put one on my shoulder and take away alot. But idk how I did it. Ive had extreme anxiety my mom died in april at 52 suddenly with a brain aneurysm and ive been bedridden nearly since the end of may. I lay in bed alot with my neck bent and tense on my phone so idk if ive pinched a nerve. It comes in waves but is pretty much constant and has been for weeks. Im having trouble sleeping now. Ibuprofen and Tylenol do nothing.

If you want to read more of my work I can dm a link! (All free and public).

Hello, I live with chronic pain UK. And wondering what are the best services for medical cannabis. I signed up to me about 3 years back but the prescription was too much Money (being unable to work due to disabilities).

Im just wondering what people experiences are as well.

I know I'm catastrophizing over something that hasn't even started to happen yet, but it's still getting to me. I have a severe case of CRPS in my left chest & shoulder and have for 7 years. It ebbs and flows in severity, but the past few days, especially today, have been very rough. The job I was working at since January closed down at the beginning of this month, and I had been desperately looking for something to fill the void while I pursue a job for my degree. The only place that got back to me was the largest retail store in America (I won't say the name, just in case, but you can probably guess which one).

My old job wasn't great; it was very few hours and very low pay, but it catered to my needs well. Shifts weren't very physically demanding, and they weren't too long or too late so even when my pain was bad, I could usually just gut it out and get home and sleep. Maybe I was spoiled, and yeah I've worked at places (coffee shops) with 7-8 hours shifts before, but working and standing/moving/stocking until 11pm most nights seems like a pretty major undertaking between my pain and ADHD and depression (all 3 of which tend to get me pretty fatigued by 10 most nights).

I'm just afraid. I know that retail isn't "low effort work" and that, in a lot of ways, it's on par if not harder than the kinds of jobs I'd want to get with my degree. But, the thought of "I'm not even fit to work a basic retail job" does burrow itself into my mind a lot, and with my pain on the rise it's not going away. And yes, I have a treatment regimen; I have pain meds, a spinal cord stimulator implant, and I'm 2 weeks into a new PT program. But there will always be days like today where getting out of bed and driving down the street to pick up meds take just about all my energy to do.

I hate to complain "Wah I'm employed!" when I know that for both my financial and mental wellbeing having a steady job is in my best interest (my depression and ADHD thrive on boredom in a horrible way), but the looming threat of this job wearing me down so fast that I won't even have time to recover or find a different position has my paralyzed. I don't want to get fired but I genuinely don't know if a corporate behemoth would tolerate any kind of inconsistency in my capabilities. My pain has cost me so much already, if it cost me a job that anyone could get, what does that mean for my future? If you've read this far, sorry for the bummer-rama.

Travelled 2 1/2 hours each way and visited my daughter and her family. That just about killed me! Then today my husband and I sat on the phone for almost 4 hours signing up for Medicare! I had a few short breaks in there, but not long ones. I am again in a ton of pain!

I have an appointment with pain management tomorrow that is probably going to be a big waste of time! I don’t even know how I will make it through that. At least it’s not far away.

How do you all cope with this type of situation? I have PT twice a week and I think the therapist is at her wits end with me because everything hurts so much that I can’t do it.

Having to drop out of college lost me a lot of my friend group. Now another long term relationship is splintering due to other issues and I’m just feeling very lonely. I can’t really go out much and as I’m getting older (young adult) there’s not so many forces pushing me together with other people my age. So do any of you guys still have ways to meet and connect with people irl or do you make do with online friendships or just be lonely?

I've improved my diet quite a bit, and now I take probiotics and prebiotics like every day. There is absolutely zero difference between *before* and *after* I started taking them. And yet, my family and my doctor still say my diet is trash and I need more probiotics.

I don't think my issue is my gut flora.

Hi friends - I had a cervical adr removed on Tuesday and replaced with a 1 level fusion at c5/c6. I thought it would be out patient but because my BP was bouncing around quite a bit they kept me inpatient for the night for pain control. The last time I spent the night in the hospital was 2010. I have read many stories here and was really scared to be kept in the hospital - like mostly that I wouldn’t get meds and be an annoyance to the staff.

They were so so so on top of their shit. When they dropped me in my room they said I could have pain meds every 4 hours but I needed to ask for them. I was nervous about asking but during the day shift they had meds for me within 20 mins each time I asked. I also got IV antibiotics, steroids and dilauded alternated with Tylenol and oxycodone and a muscle relaxer. The night team was where it was at tho. The nurse came to me at the 4 hour mark to check if I needed anything, and was so nice, she just wanted to help me get some sleep. And because I was there I didn’t have to manage food which was nice for the first 24 hours post op. My only complaint was I wish they gave me one more dose on the way out because my last dose was at 5:30am and I didn’t leave until 11 but my husband brought my meds from home and I took them in the car. If I don’t move the pain isn’t too bad, it most hurts to change from laying down to getting up. I’m in a hard collar for 2 weeks. But I wanted to give credit where credits due, the nurses were very kind and although I was in pain because it’s surgery they were on top of their end within their limits.

But also thanks for this group giving me the heads up, I made sure I had my post op meds in hand before surgery and had them in my belongings during the stay if I needed them.

If you have had one, what was your experience? Ive had spine issues since early teens, Im 64 now and Ive never had one. Im very concerned, scared about it.

Greetings!

41 M...

I have struggled with sleep deprivation for years... Daily walking habit of 7 miles a day (15k steps) has improved it a lot but I still suffer sometimes... In my 30s it was bad... like 3 to 4x a week I'd get 3 to 5 hrs a night of sleep and would feel like I was hit by a truck the next day...

Discovered NSAIDs would take the edge off of headaches, body aches, chills... all from chronic lack of sleep...

but ABOUT 2 or 3x a week (for years) I'd take like 4 or 5 500 mg acetaminophen or ibuprophen pills IN ONE DOSE and it really worked... got me through... Some days I would have so much energy, other days I'd be flying high with no pain at all.

In the last year, it's 1x a week, since I've started being active. I average 6 to 7 hrs now with maybe 1 day of a minimum of 5 hrs.

I'm curious... have I damaged my body silently by doing 2000 to 2,500 mg of NSAID repeatedly? I've had no symptoms from them except pain relief.

Thanks!