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

@loomi@lemmy.world

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

Done something to my calf a few weeks back, and every once in a while when I try to move around, all jolly like, it feels like my calf is going to tear in two. Would really like to know what the hell I did to it...It's not in a place that I could have hit it at all, O_o.

My legs are full on flexing since. This is something that’s new to me. My whole ordeal is relatively new to me which is started a year ago but has slowly been progressing since and new stuff seems to pop up. I did get an emg a week and a half ago and it showed all the muscles in my legs are firing incorrectly and other stuff.

So I went to get the blood test done my neurologist wanted on Monday. I had to wait a while but I’m 25 and there was much older people coming in and waiting so I didn’t want to take any of the chairs they could use even though I knew it would cause me pain. It did cause extra pain and my legs got super shaky as usual. I stood up for a bit and sat on the ground.

One thing I didn’t expect is my legs reacting how they are. Since Monday they have been non stop full on flexing. I haven’t got this before. Ive got it in my chest, neck, traps, hips, and back before and it comes and goes but sometimes stays for months. I’ve had pain and this and that but I’ve never had them thigh to foot just full on flex. They’ve always been tight but this is just something else. When I walk I can just feel them being so incredibly stiff and exhausted. It’s even harder to walk more than usual right now since they are fully contracted (to the extent they can be cause some of the muscles just weren’t working during emg) so trying to swing them back and fourth and bend at the knee is difficult.

I hope this goes away. I’ve had stuff random like this pop up and simply never go away. It would really suck if this is one of the things that doesn’t.

HI everyone. I have both chronic pain and a neurodegenerative disease. These things are not linked as far as I know, but it's hard to tell because my medical issues are kind of a spider web and some people with my condition do experience pain but it;s rare.

If anyone here also has a neurodegenerative disease (MS, Alzheimer's, Parkinson's,etc. or is a caregiver or friend/family member to someone who has one, we'd love to have you join us at Neurodegenerative Disease Support.

We are a small group at the moment, like most on Lemmy these days, trying to get some conversation and support flowing.

I started on 100mg x3 gabapentin and then worked my way up to 300mg x3 daily. Once I got to 300mg I became so damn stupid. So then I told my pain mgt doc and she almost fell out of her seating laughing by the way I told her I’m dumb but then she wanted to see if Lyrica would be any better. Got on 75mg x3 and I’m still very stupid.

I never remember anything and forget words mid sentence or what I’m even talking about.

Anyone else have this struggle also?

We all live with an acceptable amount of pain since we have no choice.

What do you rate your every day pain?

If someone swapped bodies with you, what would THEY rate that pain?

He said that just off the top of his head thinks it could be myositis or something along the lines of unbalance of spinal fluid. I forget exactly what the wording was.

He also looked at my thoracic spine mri and said my bulging disc was a lot worse than he thought it would be.

He also said I was hyper reflexive on my left side. I definitely noticed it. When he hit the top of my knee on my right side it did the normal kick but when he did my left knee my leg kicked all the way up so that it was straight. It startled him, I don’t think he expected that.

He said it was my whole left side but I wasn’t really paying attention until my leg kicked like that.

I’m getting another emg on Friday, a spinal tap soon, and some more blood work done.

He said that these first tests have a good likelihood of showing nothing. At least I’m finally gettting tests done