Questions about treatments...

Llynnyia · 03-31-2014, 05:29 PM

Hello I am new to forums, newly diagnosed with RSD but four year sufferer.

So I have a couple of questions about treatment the first being Gabapentin.
Right now my doctor has me slowly increasing it up by 1 100mg pill every three days, I am currently at 1200mg with no pain relief in sight. From nearly the 800mg the first side effect began the drowsiness which for me was and is actually a boon! Sleep glorious sleep! but three days ago I noticed the swelling creeping down farther then it has ever gone. Today I even have swelling between my left foot's toes and not oh a little swelling the omg cant get my shoes on at all swelling and I already buy wides. I know my RSD creeps as it has creep-ed(sp?) from the original two sights just above my knee and near my tailbone to cover the same area of what a pair of high waist-ed capri pants do. I also have the tiniest amount of swelling just above the toes on my right foot. So is this the edema side effect of the gabapentin or is it a further deterioration? I know it doesn't help that we are finally having much needed weather here. Worst of all the swelling itself is painful acid burning like painful. My skin is so tight I feel like it might burst. It cant can it? Days like today I miss my mom more then ever, but if she was in even a quarter of the pain I am in now, I can forgive her for giving in and going to the summerlands so early.

birchlake · 03-31-2014, 06:00 PM

Welcome to the forum, sorry for the circumstances.

Gabapentin, like many other drugs, can be tough to titrate to the proper "effective" dosage, which of course varies from person to person. But it is critically important to get to that effective dosage and some doctors bail out too early.

Gabapentin is my mainstay drug for CRPS. I had to go up to 1800 mg (600 mg 3 times daily) before I found relief. What your doctor is doing is prudent.

I don't think the edema or creep of symptoms is being caused by the gabapentin.

There are other drugs though which can be effective for neuropathic pain such as Lyrica, Cymbalta, and others. You might have to experiment a bit to find the right drug AND the right dosage of that drug. Have you tried any other drugs besides the gabapentin?

I'd type more, but my carpal tunnel is acting up. Hope this helps!

Llynnyia · 03-31-2014, 07:18 PM

Quote:

Originally Posted by birchlake

Welcome to the forum, sorry for the circumstances.

Gabapentin, like many other drugs, can be tough to titrate to the proper "effective" dosage, which of course varies from person to person. But it is critically important to get to that effective dosage and some doctors bail out too early.

Gabapentin is my mainstay drug for CRPS. I had to go up to 1800 mg (600 mg 3 times daily) before I found relief. What your doctor is doing is prudent.

I don't think the edema or creep of symptoms is being caused by the gabapentin.

There are other drugs though which can be effective for neuropathic pain such as Lyrica, Cymbalta, and others. You might have to experiment a bit to find the right drug AND the right dosage of that drug. Have you tried any other drugs besides the gabapentin?

I'd type more, but my carpal tunnel is acting up. Hope this helps!

No problem and thank you very much for typing through the pain to help answer my questions.

besides the gaba I am on
Flexiril 10mg 3x daily
Norco 325 mg once daily at night time but the bottle says every six hours as needed for pain.
Naproxen 500 mg twice daily.

I also have left over lidoderm patches which my doctor is holding off on refilling til she gets to know my case better. I really wish she would they work if i can keep them on by being still.

she wanted to put me on Baclofin (sp?) but I know from a separate injury that it causes hallucinations for me and not fun ones.

cdwall · 03-31-2014, 09:57 PM

Quote:

Originally Posted by Llynnyia

Hello I am new to forums, newly diagnosed with RSD but four year sufferer.

So I have a couple of questions about treatment the first being Gabapentin.

So is this the edema side effect of the gabapentin or is it a further deterioration?

Worst of all the swelling itself is painful acid burning like painful. My skin is so tight I feel like it might burst. It cant can it?

Gabapentin can cause peripheral edema. It does in me. So, yes, it can be causing the swelling.

Tonight after gabapentin last couple of days. It's usually not this bad. No other reason for it. It always happens when I take it.

Questions about treatments...-swollenfeet-jpg

Denise

Llynnyia · 03-31-2014, 10:16 PM

Quote:

Originally Posted by birchlake

Welcome to the forum, sorry for the circumstances.

Gabapentin, like many other drugs, can be tough to titrate to the proper "effective" dosage, which of course varies from person to person. But it is critically important to get to that effective dosage and some doctors bail out too early.

Gabapentin is my mainstay drug for CRPS. I had to go up to 1800 mg (600 mg 3 times daily) before I found relief. What your doctor is doing is prudent.

I don't think the edema or creep of symptoms is being caused by the gabapentin.

There are other drugs though which can be effective for neuropathic pain such as Lyrica, Cymbalta, and others. You might have to experiment a bit to find the right drug AND the right dosage of that drug. Have you tried any other drugs besides the gabapentin?

I'd type more, but my carpal tunnel is acting up. Hope this helps!

Quote:

Originally Posted by cdwall

Gabapentin can cause peripheral edema. It does in me. So, yes, it can be causing the swelling.

Tonight after gabapentin last couple of days. It's usually not this bad. No other reason for it. It always happens when I take it.

Attachment 8129

Denise

That looks a whole lot like my leg its so swollen it feels like my toes are being curled upwards. So it can cause it, but not always even if it does sometimes? If that makes any sense.

Thank you, for helping .

cdwall · 03-31-2014, 10:38 PM

Quote:

Originally Posted by Llynnyia

That looks a whole lot like my leg its so swollen it feels like my toes are being curled upwards. So it can cause it, but not always even if it does sometimes? If that makes any sense.

Thank you, for helping .

You're welcome. Off the top of my head, I believe peripheral edema (like the swelling in my foot) is in the top three of adverse events, occurring in about 8% of people. I don't know the dosage for this adverse event occurrence. Mine is at 300 mg/day.

Denise

Llynnyia · 03-31-2014, 10:45 PM

Quote:

Originally Posted by cdwall

You're welcome. Off the top of my head, I believe peripheral edema (like the swelling in my foot) is in the top three of adverse events, occurring in about 8% of people. I don't know the dosage for this adverse event occurrence. Mine is at 300 mg/day.

Denise

For you is it worth your pain reduction to keep taking it despite the edema? and you only take 300mg? my doctor told me to not even check in again with her until I am at 1800mg.

cdwall · 03-31-2014, 10:56 PM

Quote:

Originally Posted by Llynnyia

For you is it worth your pain reduction to keep taking it despite the edema? and you only take 300mg? my doctor told me to not even check in again with her until I am at 1800mg.

No, for me it isn't worth it. I have about ten lbs of extra fluid on my leg right now and I'm not very big. The swelling is *very* uncomfortable. I'm obviously not a good candidate for it, even at the low dose of 300 mg. Everybody is different though. I only take it when I'm way past desperate. I can't take narcotics or NSAIDs either.

Llynnyia · 03-31-2014, 11:35 PM

Quote:

Originally Posted by cdwall

You're welcome. Off the top of my head, I believe peripheral edema (like the swelling in my foot) is in the top three of adverse events, occurring in about 8% of people. I don't know the dosage for this adverse event occurrence. Mine is at 300 mg/day.

Denise

Quote:

Originally Posted by cdwall

No, for me it isn't worth it. I have about ten lbs of extra fluid on my leg right now and I'm not very big. The swelling is *very* uncomfortable. I'm obviously not a good candidate for it, even at the low dose of 300 mg. Everybody is different though. I only take it when I'm way past desperate. I can't take narcotics or NSAIDs either.

oh wow I am so sorry, what can you do or take?

Llynnyia · 04-01-2014, 06:58 AM

Second question.

Is there anything that can be done when barometric pressure is doing a rollercoaster and sending you into the upper tiers of pain? yesterdays weather sunshine, rain, sleet, sm marble sized hail, and repeat.

36 hours and counting no sleep due to pain lv 9 on a 1-10 . except for an hour long nap yesterday afternoon.

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