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
I’m sorry you’re going through that. For sure seeing a specialist is the thing to do - I hope they can diagnose and resolve it.
I’d it possible that the pain gabapentin helps is neuropathic and this new pain isn’t?
It’s weird because it’s 100% nerve pain but it’s like the origin of it whether it’s inflammation or something else is helped by the hydro. If it was straight neuropathic like my other stuff the gabapentin would help but it just doesn’t. It’s so weird. Not sure what the exact cause is that it would be helped by opiates
Well, I hope you find the answer, I know how frustrating it is to have pain and not know why. Good luck!
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I’m assuming you’re in the US due to insurance forcing you to do PT? I’m so sorry. The health care system is incredibly fucked up.
Gabapentin does help me a bit. I have nerve pain down my neck through my collar bone and into my arms on both sides and down through the back of my shoulders and into my arms. The back of the shoulder nerve pain is due to the CSF leak from the spinal tap. The gabapentin helps with that.
Other than that, gabapentin doesn’t do anything. I’m taking 1800 mg a day. Instead of giving pain meds that help people they are throwing gabapentin at everybody now a days. It’s sad
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What they don’t tell you about gabapentin is that the withdrawals are gnarly. Also, there is quite a bit of side effects. The only reason gabapentin isn’t controlled and Lyrica is, gabapentin take 3-4 hours to reach peak plasma levels while Lyrica is much faster
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Gabapentin can take a couple weeks to take affect. It isn’t a couple day thing. So give it some time at first. What dose are you taking now and increasing it to?
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Ah okay I see. Yeah if you don’t have nerve pain don’t expect it to do anything. It doesn’t do anything for my leg nerve pain. Don’t touch it
I’m sorry to hear you’re suffering from that. Do you have an official diagnosis as to what’s causing your pain?
When it comes to this new nerve pain - no. It’s too new for me to even talk to doctors. I posted on multiple Facebook groups explaining in more detail and every comment told me it sounds like beginning symptoms of arachnoiditis. Every person told me I need to go get an IV steroid injection asap for inflammation. But, I’m getting a muscle biopsy Wednesday so I can’t.
When it comes to my normal pain - also no. We just know I had acute inflammation for a couple months that a methylprednisone injection took away. Since then I got an emg on my legs that showed muscles and nerves not working correctly. My body will randomly twitch when I’m relaxed. It can be a finger, my neck, or leg. Anywhere.
Due to emg and neurological symptoms I have been diagnosed with polyneuropathy. I have lots of muscle pain and nerve issues but we just do not know what damage happened during that period of inflammation. We just know stuff isn’t working correctly.
My body is also hyperreflexive. Especially my legs
My neurologist referred me to a musculoskeletal neurologist and that appointment isn’t till late November.
I have had MRIs of my spine and I do have 2 bulging discs and arthritis but that stuff just doesn’t explain everything happening
I wouldn’t be so sure about the bugling discs. My best fern has fibromyalgia and had been having to do aassive amount of self research and self advocacy with her doctors. She ends up finding out some it’s not uncommon for fibro to be related to spinal disc separation.
She got an MRI after finding a sympathetic doctor and low and behold she has some significant spinal gaps. They will be replacing the discs and from other fibro people once they’ve had it done it was like they felt just inexplicably better.
Different proven different solution, but we don’t truly understand the level of impact our nerves can have on our bodies. Worth doing some digging and see what you find. Good luck!
That’s really interesting! Glad they found that doc. Unfortunately due to my emg and bodily twitching it is highly unlikely my pain is due to fibro
Oh I fully agree, definitely doesn’t sound like fibro but that was more of an anecdote suggesting that the bugling discs might be worth looking into as a potential cause. Sorry I wasn’t clear
No worries! It’s just the origin of my issues that has doctors incredibly confused. I had bulging discs prior to when this started a year ago. It all started with TMJ and escalated oddly. One of em is pretty bad but I do wonder how those discs could have played a role in all this
My personal theory based off of a lack of medical knowledge and solely logic is this, we don’t truly understand nerves beyond them conveying information using some poorly understood electrochemical process.
So it wouldn’t surprise me if issues that we seen related to pain could be due to some stressor affecting nerves and the chronic pain being the body’s only way of saying “hey human! We got problems, you gotta fix this!”.
With my best fern and her fibro it could very well be that spinal gaps result in fibro symptoms and it could very well be that spinal bugles are resulting in your issues.
Again I need to stress I’m not a professional doctor but I am a professional problem solver (it engineer) so when I see a data point and one looks kinda similar I call it out and wonder if there’s something more going on.
