I really hate chronic pain lol, obviously. Today's been hard though. Last week I met with a new neuromuscular neurologist and she told me bad news. She disagrees with my previous neurologist on the CIDP diagnoses and thinks that I have an extreme case of small fiber neuropathy.

I can't stand in one spot for more than a few minutes without my legs starting to shake or walk up or down hills. Eventually they'll give out and just tremor. She doesn't think I'll get em normal again. She said I could get some functionality back but that's it. That's also with nonstop water therapy and normal physical therapy.

Same with pain. She thinks I'll be on pain meds forever. Not only that, but the nerve pain in my legs and low spine pain hasn't gone away since the blood patch 4 months ago. I got 500mg methylprednisolone infusions for 3 days a month ago and that helped a lot and I was hoping it would go away but it didn't. Still can't have my legs in certain positions. I got acupuncture today and she did cupping on my back and did it on my hips and lumbar spine and that general area and it made it flare up. Had nerve pain in my legs the entire time. I just got a lumbar pillow and can't even use it because it makes my low spine hurt and nerve pain in my legs.

I got wheelchair assistance for the flight home for Thanksgiving and that was really tough to do mentally. The flight home also caused a lot of pain. Not only that, but I got into a huge fight with my mom and brother because they can't seem to comprehend the fact that I'm not gonna be in a jolly mood when I'm in a lot of pain.

What the new neurologist told me sucked. It has a lot of implications. Been a mentally rough week and a half. I try not to think about my future but I have been. Idk if I'll ever be able to get into a relationship with how my life is currently. I'm just exhausted. All of this is just too much. I wish I'd wake up one day and it would all be gone and I could live the life I had a year and a half ago

I'm a newcomer here, but I would like to raise awareness for people who suffer from severe trauma. The nights of little to no sleep. The tears that are wept for something that happened 15 years ago like it just happened to you. Just here to let you know that you're not alone, and no matter what pain you feel, someone somewhere can help

I've always read mixed things about them and for some reason I always thought they were thousands of dollars. Finally decided to look them up and to my surprise they're not lol. Don't ask how I got that in my head.

I went ahead and ordered one to see if it helps. A lot of my pain is muscular and I will have muscles that will seize up for basically days. Even if this can relieve some of it, I'll be happy.

Any have experiences with them?

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!