chronicpain

Flying home for Thanksgiving will be the first time I've flown since things got really bad. I'm 26 and I set up wheelchair service for the airport. Never in my life did I think so much could go wrong so fast.

I'm scared to see my brother and mom. They haven't seen me since April and stuff just has gotten worse. The pain from flying is going to be so bad. 3 hours in a plane seat. Not only that but parking, the bus ride to the airport, even being on the wheel chair will be so exhausting. I'm going to be in so much pain. It's really hard to handle that this is happening.

When I originally went to my pain management doctor she said her goal is to get her patients to participate in life. But due to my age she is reluctant. I take 30mg of hydrocodone a day and 50mg of tapentadol xr and it allows me to do chores some days. Some days I can shower. I know I metabolize oxycodone way better than hydrocodone from when I got it at hospitals. I don't know how but I need to get her to understand I'm miserable. I've tried.

I'm just having a really hard day today. I'm so scared of flying home and back. I'm scared of my future. I don't know if I'll get my leg function back to how it was. I don't know if the IVIG infusions will help. There are so many unknowns and I'm stuck. My pain management doctor could help me more but she doesn't. I'm grateful for what I have but it's not enough.

In just over a year my entire life flipped upside down. I moved to Denver to hike, mountain bike, snowboard, play sports, etc. I wanted a new life and now I can't do any of that. I try to not think about the future and just go day by day. I don't know. Simple things are so hard for me. I was so active, I did so many physical activities. I just walked from my apartment to the amazon locker to pick up a package which is a 3 minute walk each way and that hurt and got worse.

I don't know how I'm going to live the rest of my life like this if the IVIG doesn't work and my pain management keeps on being reluctant on my pain meds. I can't live life like this. I'm so embarrassed. Why did this happen to me. Every simple thing is so hard like unloading the dishwasher or laundry. I keep my clothes in the dryer and just take them out as I need them instead of folding because I dread it. It can cause so much pain. I just don't understand. I can get complete paralysis of my legs just by walking up or down a small hill where they seize uncontrollably. Or even laying on my back and lifting them up will do it.

I'm having such a hard time today. Everything I once knew and did is gone. My entire life. It's even affected my lungs. Some days I simply can never catchy breathe. It's hard to breathe some times.

I just don't know if I'll be able to hold it together when I see my mom. I've barely been holding it together recently in general. So much has gone wrong and it makes no sense. I just want to go outside. I want to go make new friends. But I can't. It's so embarrassing that this is happening to me. I just don't get it. Some days i can barely even watch TV it's so bad. I just want to be normal again. I want to have my life back but I don't know if I ever will

During my apt Wednesday with my neurologist he mentioned starting me on IVIG infusions. He also referred me to a rheumatologist and I thought I had seen him first but I don't. He wants to get me going ASAP to get my insurance to accept it along with scheduling cause that can take a bit.

Im excited. The solumedrol 500mg infusions are starting to kick in on the 3rd day. I actually woke up in the least amount of pain than I have in a long time. I've only gotten mehtylprednisone once prior in March and other than that only Prednisone. The original methylprednisone helped me but the normal Prednisone never did with my normal pain. Today was my last day of it.

I'm not sure what that implies that mehtylprednisone helps my entire body pain but normal Prednisone doesn't but I'm sure it means something! Maybe it's simply the dosage. Because originally I got 125mg of methylprednisone and the Prednisone pills were only 40. This methylprednisone is 500mg. So maybe my body just requires a high dose to help it. It's definitely helping my lower spine and nerve pain in my legs thank God.

Anyway, I'm excited for the IVIG infusions. I hope they help. I also see a neuromuscular neurologist day before Thanksgiving, rheumo my neurologist referred me to on the 13th of December, and my PCP referred me to the university of Colorado for a rheumatologist. So I still am going to see a lot of people coming up but I hope that the IVIG does something.

Also, something that I find interesting with this mehtylprednisone is that I feel my body weight on my muscles. Idk if muscles have gone completely numb and I never noticed but yesterday when I woke up it's like I could actually feel my body weight on my legs and upper body. Previously I realized I felt weightless and it was super weird. Woke up again this morning and the same thing. Like it was hard to walk and I could feel my muscles contracting. I have a rubber tape thing my PT gave me for arm workouts and whenever I used that I could not feel any type of burn in my muscles. I felt nothing. Although, I still get a lot of muscular pain but everything is technically "nerve" pain. That could be due to some muscles not working so other muscles have to compensate so there's an imbalance from my EMG results.

So he has officially gave me a diagnoses of CIDP

Wow. I have never had someone actually truly believe me and give me something I need right away. First off I should say my neurologist is convinced I have CIDP and my reactions from my spinal tap and blood patch 3 months could be a cause to my reaction

So I went yesterday to my neurologist to go over my muscle biopsy report along with my nerve pain from my blood patch. My muscle biopsy shows denervation a long with other tests supporting CIDP.

So, when I told my neurologist about my nerve pain he thinks it could be my body just reacting poorly to any sort of trauma. Not only that, but where I got my muscle biopsy is still a tiny bit swollen 6 weeks later which he thinks is also a reaction of my body being in overdrive. His clinic is connected to a infusion clinic. They work together. So, he told me he is sending in an emergency solumedrol 500mg infusion for right then and there at the apt so I got it then for an hour, then I'm going in today, and tomorrow for more infusions.

I should feel amazing about this but you know, pain messes with your mind and I am happy but it doesn't last long. Regardless, my neurologist truly believes me, didn't question it, and acted right away. I'm really hoping this helps because my nerve pain and low back pain can be unbearable

So he basically put me on the emergency arachnoiditis protocol.

I'm getting an MRI on Sunday to see what damage has been done to my lumbar spine from a blood patch. Long story short, got lumbar puncture, CSF leak, blood patch = lumbar electric shocks + muscles around lumbar cramping + from soles of feet to lumbar spine feeling like I'm being stung by bees + sensation of ants crawling all over legs + feeling of something swollen in my lower back.

Like, I know something is really wrong with my lumbar spine. The dude who did my blood patch royally fucked up because during it I got bad nerve pain and it hasn't gone away 2 1/2 months later, got worse. Nerve pain and spine stuff isn't anything to mess around with especially when it's combined. I want to know what's wrong but at the same time I don't. Because, if I find out what's wrong then I can learn whether it's treatable or not (I doubt this) along with getting a diagnoses and then I can learn how bad all my symptoms will progress + what else is to come.

My neurologist thinks I still have spinal fluid leaking, inflammation, and a mass forming in my spine. So in short, arachnoiditis. No bueno! It don't feel good. What upsets me the most about this is what if we can get my other pain figured out but now I'm left with permanent damage in my spine? I've gotten Prednisone twice for this and it's helped both times.

Do you think I can go to the store and upgrade or buy a new spine? Sounds good to me!

The pain medication shortage needs to be stopped. They are attacking the wrong people to act like they are fighting the 'opioid epidemic'. I hope everyone has been able to get their filled on time if you are even able to get them since doctors are terrified to prescribe them now a days.

I’m hoping this muscle biopsy will give me some answers. The emg I had showed muscle and nerve not working correctly in my thigh we haven’t found anything that can tell us why and what damage was done during my period of acute inflammation. Hopefully this can give us a hint as to what’s up.

When I woke up from the anesthesia I came to and I was fist bumping every nurse in the room 😂 They said I won the award for the funniest wake up of the week. For some reason I told a nurse that had nothing to do with my case that I loved her while she was leaving lmao

About 2 months ago was when I got my blood patch after my lumbar puncture a week and a half prior.

For a week after my BP I had bad nerve pain in my legs. I was on prednisone for a week after and it helped it subside until now.

So about 2 months after the blood patch my nerve pain in my legs has come back. It took a month and a half after my blood patch for my csf leak symptoms to finally go away.

It’s like I just can’t win. The nerve pain in my legs has come back with a vengeance. It’s the worst when I’m laying down. It’s like someone is trying to rip off my legs from my the soles of my feet to my low back. It’s like a bad stinging pain that you just want to stop because it’s so uncomfortable. Not only that, but it’ll feel like bugs are crawling all over my legs.

It started off small but then has got worse every single day to where I can’t even sit comfortably anymore without nerve pain. Only been a week since it came back and it’s hit hard. My lower back where I got my blood patch has also gotten sensitive and hurts.

Not only that, but just a few days ago I started to get headaches again while standing up. I was like ahh this has to just be a coincidence no way I’m leaking again. Well, it hasn’t stopped. I am also getting nauseas.

Nerve pain is the absolute worst because you know it can grow to absolutely ruin your life and there’s no stopping point for it. I don’t know what to do anymore. I’m obviously going to talk to my doctors but like Jesus Christ. I can’t deal with damage from my lumbar puncture and blood patch.

What I don’t understand is that gabapentin doesn’t help this nerve pain at all, but my Hydrocodone does. Gabapentin helps my other nerve pain but does zip for this. I don’t know why Hydrocodone would help this situation. Ahhhhhhh I just want to scream it’s never ending

Because in the 100°s during the day and 60°s or 70°s at night really sucks for me. I hope you all are having a "good day" (whatever that means for you - maybe no extra painkillers is a good day)

(No real diagnosis, just hypermobility, chronic back/SI joint/hip pain for the past decade and extreme weather changes hurt like a b!tch)

Thanks for listening/reading.

I believe my chronic pain is all from TMJ and bad posture. When I do exercises to fix my posture I get pain from my TMJ down to really tight pelvis and thighs. So everything in between also. I’ve been stuck trying to figure out what to do to help myself. And of course, my spinal tap came back clean and yet I’m still dealing with complications from it.

I’m going to a physical therapy session with someone who does posture restoration and I’m really hoping it can help. I’ve found tests they do on YouTube to figure out what exercises are best for you and I struggle with all of them that I’ve found meaning my body is doing exactly what it would be doing due to bad posture and pelvis alignment issues.

It gives me hope that maybe I can start activating the muscles that aren’t working and hopefully in turn start to feel better. Everything I’ve seen on YouTube about them is exactly what I’m feeling. They keep in mind dental/jaw issues with all of this.

I know it’s a low chance someone here has heard of this or has chronic pain due to TMJ and posture issues but I’m curious

So I posted here after I got my spinal tap a few weeks back and I really wish I never got it. All it has done is cause more issues.

I had a bunch of hip and pelvis pain after it but I’m not gonna focus on that for this. My spine ended up not healing itself so for a week and a half before the blood patch I was experiencing the worst headache that I knew could actually exist, draining sinuses, eye pain, shoulder pain, more nerve pain into my shoulders and arms, and this raw indescribable pain in the back of my neck and between my shoulders that felt like my spine was being crushed. I was so uncomfortable. Having spinal fluid leaking makes your entire body feel so completely abnormal and wrong. I don’t how else I could describe it. The only good that came out of it was that I was sent to the hospital for an emergency mri by my neurologist due to symptoms of a hematoma. That’s not the good part, I had to spend the night so the next day I talked to a lot of people and I was talking to this woman there and she really wants me to see a neurologist at that hospital so I was able to get a referral to see them from my paint mgt doc. My current neurologist is currently moving to a new clinic but its too far away from me.

So I got a blood patch just over a week ago and that came with it’s own issues. Before the dude started he told me that if I feel any nerve pain in my hips or legs to tell him because it can cause permanent damage. I felt it, bad. We had to let the blood settle 2 times because it came on so I told him. As he was pushing the blood in I could feel the pressure build up in my spine so I could feel how fast he was going. After we waited the second time I gave him the go ahead. I honestly think he messed up and pushed too fast because all of a sudden I felt a ton of pressure build up and then the nerve pain hit me like a ton of bricks. It was so bad. For 3 days straight I had non stop nerve pain. The only wait I can describe it is as if some is constantly pulling on your leg really hard and stretching your nerves.

It has calmed down since then but it’s not gone. If I make a wrong movement or just am up for too long my hips and legs down to the bottom of my feet will start hurting. Not only that but the blood patch didn’t even fully work. I’m a lot better off but my sinuses are still draining a bit, I still get a headache from being up, eye pain, shoulder pain, still worse nerve pain in chest shoulders and arms, and between the shoulder and back of the neck spine pain is still there constantly. Don’t get me wrong, it’s better, but it’s not gone. Not only that but around the area where I got the blood patch and spinal tap will start hurting if I move too much. All my muscles in my back are also extra tight.

This whole thing just caused so many issues it’s so frustrating. I really wish I never got it. It’s just so frustrating because such a “simple” procedure has caused so many damn things to go wrong and I’m just straight up not having a good time.

The back of neck pain and between the shoulder blade pain is so incredibly annoying. Well actually all of it is but that part is what bothers me the most because holding my head up is just such a task. Not to mention I already have a bulging disc back there so I can only imagine less spinal fluid is only making it worse.

Editing this real quick to add something. So I get full body twitches since my issues started but only when I relax. For example when I’m in bed my arm, hip, legs, etc. will twitch. It’s a big twitch too, not a small one. It can move my entire body. Here’s the odd part that I have no idea what it means, before my blood patch my body completely stopped twitching. I had 0 twitches for a week. As soon as I got the blood patch and got home and laid down my body started to twitch again. I have no idea what it means but it’s something I noticed

I hurt. I hurt all the the fucking time. My belly hurts. I'm reducing my drinking but it really sucks. The withdrawals suck real bad.

Lost my colon to U.C. Have a bag on my belly.

I have to move my family out of the south. I have to be physically able to do it. We have to get out.

If I get them out maybe I they'll be able to live happy.

I just want to die. I want the pain to stop. I don't let my people know. They can't do it without me.

I'm tired. I hurt all the time. I'm tired of hurting. I could turn it off, but I don't for now. I'm tired of the pain. I love them and they need me. I just want to make sure they're in a good place, away from here. Then I can finish it.

[Chorus]
Ah well, everybody's heard about the GERD.
G-G-G-GERD, a GERD, GERD, GERD is the word.
Ah well, a GERD, GERD, GERD, the GERD is the word.

Anyway, anyone else sing songs, change words to songs about your ailments?

I have this one, and I had written a whole one for Metallica's Sanitarium called Chronic Pain (But deleted it in a fit of rage about 5 years ago). As well as one for the Jabberwocky poem...I think I can remember some of it.

T'was achy in the taichy joints.
Did wryde and balder in the Inge.
...
...

Beware the Crackerback, my son.
The bones that creak, the joints that crack
Beware the throbthrob knee, and shun
...

I noticed I’m mostly posting in here and would like to know how you all are doing.

I ended up being sent to the hospital by the place that did my spinal tap due to complications so it’s been hectic and very painful for me.

Very stressed and tired and just want to get back to baseline pain.

How’s your week been? What have you done this week that challenged you? Do you have anything you are worried about coming up? Having pain better or worse than usual?

Has anyone had a lumbar puncture that can tell me their experience?

The procedure itself was fine and I had a slight headache after and this morning but mother of god save me my lower back, tailbone, and hip are in so much pain. I don’t cry from pain but I’m on the verge of it. Since this morning I’ve been laughing from the pain it’s so bad that’s the only reaction I can do. I’m laying down now but I’m still hurting so bad. Like I honestly cannot understand how or why I am in this much pain. The doctors didn’t even tell me about hip pain or that lower back pain would be bad. My hydros aren’t even covering the pain. They help but not enough. Granted I don’t want to go over my daily dose. Has anyone had a lumbar puncture and can tell me if they had really bad pain? My headache is gone but my lower back, tailbone, and hip pain is so insane. Like this has to be what it feels like to give birth (I’m a male). It feels like my hip bones are going to snap or something. I am miserable. Also getting cramps and spasms everywhere. My body is not happy

They better find the reason for my chronic pain from this procedure or I’m gonna be pissed I’m going through this

It was $1300🤡 I thought it would be my normal copay but nope. Haven’t hit my deductible so I just got hit with my first random huge medical bill.

My back aches that’s for sure but I just took my painkillers so hopefully that helps soon, laying in bed the rest of the day. They tested my blood for MS. I really hope something shows in here since we know my muscles and nerves in my leg are messed up.

I’m also nervous and scared for the results. My cat can tell because he’s been rubbing on me in bed like I’ve been gone for days.

Hey all, I hope you’re doing well.

So I’m having a pretty tough day today. I’m 25 and decided I wanted to try to date again so I put on my hinge profile that I have chronic pain and can answer any questions. I had a date last weekend and was supposed to have another one today but backed out.

The reason I backed out is because I don’t know what the outlook on my life is right now. I don’t have muscle inflammation per blood test but prednisone was absolutely amazing to me so that means it has to be inflammation of my nerves or something else and that isn’t really good. I’m getting a spinal tap Tuesday.

I feel so guilty even trying attempting to get in a relationship. Like even if she is okay with what’s going on with me, I realized I’m not okay with allowing someone else to have to deal with my situation. Especially since I don’t have a diagnoses currently and I would hate myself if I found my ‘soulmate’ to just then find out I only have 5 years left, especially to someone that is my age.

I’ve always tried to look at the positive side but the only angle I’ve been looking at is the fact there is potential of being able to live a healthy life being on prednisone, immunosuppressants, immunoglobulin IVs, or something like that.

When considering bringing someone else that would be significant in my life in I have to look at it from the perspective that I’ve been ignoring. That it’s possible I could end up wheel chair bound, or find out I likely only have X years. It morally feels wrong for me to go on dates.

This is the perspective I’ve been ignoring and thinking about it yesterday and today has taken a toll. I’m pretty lonely, I would love to have a SO but I just can’t. It sucks too cause I moved here a year ago and was making friends then lost all of them besides 1 throughout this.

Even ignoring the diagnoses part I still feel guilty trying to get in a relationship due to how limited I am cause of my pain. My whole life I played sports, hiked, biked, camped, did whatever physical or fun activity I could and always stayed fit. Here I am now barely able to do anything. Even on all my pain meds. The guy is the one whose supposed to be able to protect and this and that. How am I even supposed to do that? I wish I could get therapy here because I do need it but I work remote and my work insurance doesn’t cover out of state therapy.

I don’t even know if I’m looking for tips or just hearing others stories if they can relate. Just been a really rough day. I think I just finally broke down because I’ve been super strong through this and haven’t let this get me down but when it comes to having a SO which I want, I’ve been ignoring that this whole times because I know it forces me to think of this stuff. It’s so much easier going through it alone than with someone by my side and seeing me like this. Less people to disappoint

@[email protected]

For your GERD have you heard of the acid reflux diet? I was listening to a podcast one day and Bette Midler was talking about this diet with somebody who was losing the ability to speak. She follows the diet to save her voice for singing and her Las Vegas show. I certainly hadn’t heard of it from my doctor who only prescribed meds.

I have, and have tried to stick to it, but hard to think through everything. Also, I'm not safe driving any more, so I don't really go out when I think about it either.

I had to eliminate one prescription med (progesterone), vitamin D, tomato sauce, raw onions, and mint from my diet. With a those changes, I have only the occasional acid reflux event. I sneak a pizza dinner one evening every 2 months or so, and as long as it’s one night only, I can get away with it.

So far, I find lentils to do the best, but I am so sick of lentils. So very sick of them, heh.

Here is a John Hopkins link about the diet. If you had tomato sauce with those gnocchi, you might have made the reflux worse of tomato is a trigger for you.>>>>>>

Nope! No tomato sauce. Olive oil and butter, but almost everythig does it to me, now. I can't even take antacids as I start hacking the sodium in them out of my lungs, and boy that is nasty. (Which reminds me...Try and take half of one...I need to belch).

Do you ever wonder how normal people would react if we were able to give them our pain for a day? I feel like our tolerance for pain has gone up enough that what we feel on the day to day would make someone legitimately think they’re dying and go to the hospital

I've posted this before at r/ChronicPainArt on reddit...But I'll post it here, too.

Pretty self explanitory...I kind of wish it was worse, because I would have gotten help from everyone...verses...I'm faking it...Oof, the amount of hate I have gotten from my family (wife, sons, and the youngest's girlfriend).

As for Chronic Ed. This is a comic idea I've had for quite some time...I've got a few decent comics posted on Deviantart, but I still want to get several more drawn up before I start posting them somewhere better. Unfortunately, I just don't have the mental power to push myself to do it...All the hate I've gotten over the years didn't help. Plus, my pains are a pain in the arse. Sitting, standing, walking, laying down...It all hurts...There is no such thing as comfort any more...Yeesh!

Anyway, hope ya'll like it.

Last night I was able to change my bed sheets, make me food, and play with my cat and then swept my kitchen one after the other and I wasn’t in miserable pain!!!!!!!!! Do you know how insane it felt to do that? I cried.

I usually try to change my bed sheets once a month because of the amount of pain it causes me. I hate having to get up from the couch to get food because every single time I stand up it hurts so bad and I’m limping everywhere. I’ve felt like I’ve been neglecting my cat this year because of my pain even though I tried to play with him as much as I could everyday. I tried my best to be able to play with him for 30 minutes a day laying on the ground and doing whatever he wants.

I’ve been on 300mg tramadol for so long and yet I’ve been in so much pain. I noticed a couple hours after I took the Hydrocodone when I stood up to go to the bathroom my entire body wasn’t aching. I was still limping naturally because my hips and legs just get so tight but there was minimal pain!!!!

I can’t believe this. This is all I have wanted. All I’ve wanted was to be able to move around my apartment without dreading every single step I take. I even decided to sweep up my kitchen last night for no reason because I could! I used to do it everyday but then it went to once a week because of how much pain it would cause

Now I don’t know how it’s going to do when I eventually go out and walk around but that will be a situation I address when I decided I want to try going shopping or taking a 40 minute walk. Not just yet though. I will this weekend but I’m going to enjoy my minimal pain as I can currently for the next couple days