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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I have neuropathy for a year and 1/2. I have just experienced numbness in my feet. Last night I woke up with excruciating pain in my toes

A MyLupusTeam Member asked a question 💭
NC

On one foot. It was terrible. My neurologist told me that my neuropathy would not get worse. What’s happening? I take 1200 mg gabapentin daily.

February 4
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Answer Summary

Members responded to someone experiencing unexpected worsening of neuropathy pain despite their neurologist saying it wouldn't progress,... Read more

Members responded to someone experiencing unexpected worsening of neuropathy pain despite their neurologist saying it wouldn't progress, offering both solidarity and practical insights. Several members shared that breakthrough pain can occur even with gabapentin, with mixed experiences on its effectiveness, while one member recommended Voltaren gel (especially the higher-strength version available in Mexico) as a helpful topical treatment for tingling, burning, and shooting pains. A recurring theme was the importance of returning to specialists like a rheumatologist or pain management clinic to adjust medications when symptoms change, as neuropathy pain can fluctuate over time even with consistent treatment.

A MyLupusTeam Member

Hi Frankie, thank you for this information. I also take gabapentin and have very painful leg cramps in both legs.
Deb

February 4
MyLupusTeam

Why is your neuropathy causing sudden excruciating pain despite being on gabapentin?

It's concerning that you're experiencing new, severe pain after having neuropathy for a year and a half. Peripheral neuropathy from lupus can cause varying symptoms including numbness, tingling, and pain that may change over time.

The sudden Show Full Answer

Why is your neuropathy causing sudden excruciating pain despite being on gabapentin?

It's concerning that you're experiencing new, severe pain after having neuropathy for a year and a half. Peripheral neuropathy from lupus can cause varying symptoms including numbness, tingling, and pain that may change over time.

The sudden excruciating pain in your toes could indicate several things:

* Your neuropathy symptoms may be progressing or changing
* The gabapentin dose may no longer be adequately controlling your nerve pain
* There could be additional factors affecting your nerves, such as inflammation from lupus activity

Peripheral neuropathy in lupus can cause numbness, pain, tingling, or burning in any part of the body. The fact that you're experiencing both numbness and severe pain suggests your nerve involvement may be evolving. Since your neurologist told you the neuropathy wouldn't worsen, this new severe pain warrants immediate follow-up. You should contact your rheumatologist or neurologist right away to:

* Determine if this is related to lupus disease activity
* Assess whether your current gabapentin dose needs adjustment
* Rule out other causes of the sudden pain
* Prevent additional nerve damage

Early intervention is important. Your treatment may need to be modified, whether that means adjusting your gabapentin, adding other medications, or addressing underlying lupus inflammation that could be affecting your nerves.

A MyLupusTeam member shared a similar experience, saying they saw their doctor when electric shock sensations "started occurring multiple times a day" and underwent an MRI to determine the cause.

February 4
A MyLupusTeam Member

Sorry Ladies but Gabapentin did zip for me. Never helped no matter how high the dose. Is it really helping any of you?

February 5
A MyLupusTeam Member

I take Gabapentin as well and it works great.

February 4
A MyLupusTeam Member

Is it possible the pain was in your toe joints (which I sometimes experience) rather than the neuropathy, Frankie? Just a thought, though it's possible the neuropathy is worse sometimes than others, too. I hope you get relief soon and discuss this with your doctors.

February 5

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