[AnomalousCarrotCake]

The past 3 days have been more painful than I've had in a while, and I don't know what triggered it, but here I am.

When I lie down, it seems like stabbing nerve pain is shooting right through my shin and won't stop -- though sometimes it lessens. Sleep has been screwed up because of this, and I am so tired I don't want to move.

I've begun to wonder whether or not I should see a doctor for this. And who, and what they can do for me.

I took gabapentin in the past but reacted badly to it. I know mostly that or Lyrica is prescribed for nerve pain. So I've been hesitant to see someone, only to get offered something that I won't take.

I've tried LDN and while that's helps somewhat, lately I've had to take a break from it because I began to feel restless on it. I was told it can build up, and sometimes you have to lower the dosage and/or change dosing schedule. I just stopped entirely, though, to see what my current baseline is.

It's presumed that I developed neuropathy due to an infection attacking my nerves. I've tested negative for diabetes twice including a GTT in the past 3 years. I am overweight, though, and wonder how often I should get rechecked for diabetes since type 2 has become fairly common and I have a few risk factors for it (which I'd like to reduce where I can, such as lose weight, but it's hard to when my condition comes with a lot of fatigue).

So, not sure where to go from here.

I guess I just wanted to get it off my chest that things are hurting more lately and I wish it would stop.

Thanks for listening.

[healingme4me]

Do you see a neurologist? Makes sense that diabetes can trigger neuropathic nerve pain. My first thought was neurontin, but you mentioned a bad reaction. A neurologist is the appropriate specialist. Maybe they'd have alternative suggestions to manage your symptoms.

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[AnomalousCarrotCake]

Originally Posted by healingme4me

Do you see a neurologist? Makes sense that diabetes can trigger neuropathic nerve pain. My first thought was neurontin, but you mentioned a bad reaction. A neurologist is the appropriate specialist. Maybe they'd have alternative suggestions to manage your symptoms.

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Nods. Yeah, I probably should see a neurologist. I mostly have seen an internist and rheumatologist for my pain problems to date, and had a consult with an infectious disease specialist years ago when this all came on after an infection.

I don't have diabetes so far as I know, having been tested twice in 3 years. But I keep checking for it periodically anyway, just in case I develop it due to risk factors.

I know I should see a new specialist about the neuropathy but I am also emotionally burned out on medical care because I have been seeing different specialists for different symptoms which were triggered by the infection (heart rhythm irregularities, digestive issues, etc.) a lot recently and I want a break. It's always something...

[healingme4me]

My apologies for misreading about diabetes. I hear you about burn out from seeing one too many doctors. For me, familiarity with office staff borders on a frustration level, in many ways. I had a staph infection back in '07, before I ended up referred to a neurologist, and a diagnosis of MS based upon mri and an clinically isolated optic neuritis in '00. With that staph infection, I remember my father saying, 'where does an infection really go?'

So, I certainly hear you, about infections and subsequent illnesses that didn't exist prior.



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[AnomalousCarrotCake]

Originally Posted by healingme4me

My apologies for misreading about diabetes. I hear you about burn out from seeing one too many doctors. For me, familiarity with office staff borders on a frustration level, in many ways. I had a staph infection back in '07, before I ended up referred to a neurologist, and a diagnosis of MS based upon mri and an clinically isolated optic neuritis in '00. With that staph infection, I remember my father saying, 'where does an infection really go?'

So, I certainly hear you, about infections and subsequent illnesses that didn't exist prior.



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Sorry to hear you've been in a similar place.

Yes, I'm thinking I need a new PCP because my current primary is -- while someone who is handy with ordering new tests and dealing with common ailments -- is not good with people with chronic illness or 'complicated' conditions.

I go to her office when I want to check on something small or get something simple treated but otherwise I'm relying on my rheumatologist more for help with pain and chronic issues because she (so far) seems more clueful about what I'm dealing with and willing to think outside the box.

But in general, I'm disappointed with the state of medicine more than anything because I don't think they have developed the most effective treatments for pain, and nerve pain in particular. And even if they do work, somewhat, the side effects are not always worth the price of admission.

For what it's worth, your father may be on to something. There is some evidence infections can trigger a number of (sometimes seemingly unrelated) problems. One notable thing which also happened with me is that my immune system may not have been normal when I got infected -- and this may be why recovering from it has been difficult.

I hope that things get better. And that I can find ways to prevent them from getting worse. It's all about quality of life at this point, though I don't have all the answers.

[Gus1234U]

once upon a time, (tho i can't find it today), Amazon.com sold an herbal treatment for neuropathy. my cousin used it for what ended up being a temporary flare. who knows what brought on the remission, i don't. but if you do seek natural, herbal medicinals, do read up on their history and bonifides.

i hope you find something that isn't a wicked chemical that helps you~

[AnomalousCarrotCake]

Originally Posted by Gus1234U

once upon a time, (tho i can't find it today), Amazon.com sold an herbal treatment for neuropathy. my cousin used it for what ended up being a temporary flare. who knows what brought on the remission, i don't. but if you do seek natural, herbal medicinals, do read up on their history and bonifides.

i hope you find something that isn't a wicked chemical that helps you~

Thanks. I'm looking into different things that might help by doing my own research. I just get tired of doing it, and wish it was easier.

LDN actually did help a fair amount for a while. Most people don't have any side effects on it at all after the first 2-3 weeks. And unlike me, other people who try it may have a doctor who knows more about how to use LDN alongside other meds and how to manage the dosing changes. My doctor who prescribed knew about LDN and followed clinical study guidelines -- but doesn't seem to know much about adjusting dosing up or down and just told me to figure it out. Other doctors know more, have more experience with it.

I've read that B-12, some other B vitamins, and ALA can help with neuropathy. I have taken B-12 but haven't tried the rest, and guess those are easy to pick up. If I learn anything about herbs, I might try that eventually too. We'll see.

[likewater]

What is LDN ? I take Gabapentin for fibromyalgia but I have neuropathy. I don't no why. I'll be crying and my boyfriend asks , '"does it feel like when your foot goes to sleep?" Um, exactly. That's why I'm crying. No, you idiot. It feels like wasps are stinging me all over my feet and I can't stop them which I already told you. My goodness he'd make a terrible nurse. In my imagination he's asking a patient ,"what's your pain level?" Patient screams, "it's a ####ing 10!!" My boyfriend the imagined nurse calmly responds , " so you would sa you are experiencing a mild amount of pain, right?"

[AnomalousCarrotCake]

Originally Posted by likewater

What is LDN ? I take Gabapentin for fibromyalgia but I have neuropathy. I don't no why. I'll be crying and my boyfriend asks , '"does it feel like when your foot goes to sleep?" Um, exactly. That's why I'm crying. No, you idiot. It feels like wasps are stinging me all over my feet and I can't stop them which I already told you. My goodness he'd make a terrible nurse. In my imagination he's asking a patient ,"what's your pain level?" Patient screams, "it's a ####ing 10!!" My boyfriend the imagined nurse calmly responds , " so you would sa you are experiencing a mild amount of pain, right?"

Since I couldn't handle gabapentin, my rheumatologist decided to offer me LDN, also known as Low Dose Naltrexone.

Anyone reading along may be surprised, because at high doses, naltrexone has been used to treat drug addiction to opiates. But some research has been done which determined that at low to very low doses, the same drug works to treat pain, and in particular, fibromyalgia.

I have been differentially diagnosed with fibromyalgia, so what I say here may be useful to you -- but usual disclaimer of what works for others may not work for you:

Low dose naltrexone has been studied for treated fibromyalgia at Stanford University, and so far, the results have been promising:

Low-Dose Naltrexone Reduces the Symptoms of Fibromyalgia
Low-Dose Naltrexone Reduces the Symptoms of Fibromyalgia - Stanford Systems Neuroscience & Pain Lab - Stanford University School of Medicine

Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels.
Low-dose naltrexone for the treatment of fibromyalgia: findings of ... - PubMed - NCBI

They've conducted a couple studies, the results are very promising, and because of this, some rheumatologists are now independently prescribing LDN to their patients with fibro and other conditions where muscle and nerve pain are present.

The good things about it:
- It's cheap compared to other drugs used to treat fibro, especially if you have to pay out of pocket.
- Side effects profile is extremely low, unlike other pain meds, and they usually only last the first 2-3 weeks.
- Dosing is easy. One dose taken at night right before bed.
- There have been plenty of studies done on naltrexone itself (though at much higher doses) so it isn't a new drug per se, and more is known about its safety and efficacy.

The bad things about it:
- You must stop ALL opiate pain medicines for 2 weeks (longer is better, as side effects risk decreases the more you're weaned off opiates) before you can get on LDN. LDN works on opiate receptors in the brain, and opiate pain meds will block LDN from working.
- You can't just pop over to Walgreen's and get it. You have to order it from a compounding pharmacy.
- It can stop working after a while, or after a long time of use one may get restless on it and find they do have some side effects. If this happens, one may have to back off on it and take less, or take it every other day or even less often. There's some evidence it builds up and one no longer needs a steady dose.
- It can be tricky to manage around thyroid medication. There's some evidence it can help 'correct' autoimmune thyroid, and people who have this condition and take, say, Synthroid and/or Cytomel or Armour have to begin tapering down their dose of thyroid meds while on LDN or they will develop hyperthyroidism.
- Not all doctors will prescribe it, for whatever reason -- even though side effects and risks are pretty low. You may have to look for someone who has a relationship with a teaching hospital or medical school; someone who is open to prescribing it and more importantly, following up with you while you take it.

This is personal opinion only: I have gotten more relief for pain out of LDN than I did from gabapentin, and I got more relief out for pain out of it than the opiates I've had (Vicodin, Tramadol, others). It may be that for all my complaining about neuropathy now, I just need to get back on the LDN and try it again (It was making me anxious and restless, during a time when my anxiety was already getting severe, I stopped because I hoped the anxiety would lessen. It has somewhat.)

Those who have been enrolled in the studies reported major decreases in pain. I don't want to oversell this, though, because note that it did not work for everyone to the same high degree, and the above groups are small study groups. What is needed is a large clinical trial, but it's unlikely one will be conducted due to expense and lack of profitability. (Cross your fingers that I'm wrong there.)

Hope this answered your question. Maybe LDN is something that could help you, maybe not. Talk to your doctor/specialist about it, or someone who specializes in LDN treatment.