[fewdalord]

Doc says I have nerve damage in leg above ankle but that it isnt rsd. She is gonna put me on a low dose of neurontin. What dose are people on?

[daniella]

Hi. This week I increased to 1800. I started at 300 and my doc siad 1800 to I think 3200. I had tried it at the start of this 2 plus years ago but was having weird symptoms but it ended up it was not from this so I started it again. Each week we increased by 300. Are you on any other meds or have you tried any? Everyone is different in what and how much they can tolerate.

[Dew58]

I am currently taking 2400 mg of Neurontin per day. It has made a significant difference,for the better, with the burning pain.

[bobber]

They started me on 100mg 3 times a day,,my wife had been on 300mg 3times a day,,,,it depends on the individual,,, everyone reacts diffent your body will allow you to increase over time,,,i was floored with a 300mg,, its better to start out low,,you can always add,,but you cant take away,,,,im sensitive to all meds,ive had liver problems which makes me hyper sensitive,,,,good luck ,,,, bobber

[loretta]

Hi and Welcome,
I was diagnosed with RSD after 4 years. My neuro started me on 300 mg, but only had rsd in one hand. Now 9 years later and full body, and a different Neuro. I had to be on 3200 to stop the violent jerks, electric jolts, spasms that happened dailey. The neurotin at 3200 stopped the symptoms, gained a lot of weight, but it helped the burning pain and like I said the dailey jolts. When Lyrica become more common on the market we switched to Lyrica. For me, at 400 mg. I felt it helped the burning pain better. Besides, this drug, I was on two anti-depressants, anti-anxiety, sleeping pill, pain pills, and two blood pressure meds.
Last October I asked the Doctor if I could try and go off the Lyrica, I hated the weight gain, and brain fog. We gradually went off and I love the clear head and lost 30 lbs in 6 months. On my 2nd 30 lbs weight loss. I have had a couple issues with spasms,but nothing like before. I was having terrible insomnia, so he changed me from Ambien CR to Seroquel and I'm sleeping again SO WELL! He cut my anti-anxiety in half and reduced the vicodin from 6 to 5. I'm feeling so much better with the SLEEP. I think I may be able to go down to 4 vicodin.
I was diagnosed when I went out of state to a orthopedic hand specialist, I knew I didn't have rheumatoid arthritis, as I was diagnosed. The new Dr. diagnosed me in 1 minute, then sent me over to hospital of neuclear med scan on hand, which confirmed it.
After I came back home, I saw a neuro. who did additional nerve studies and confirmed RSD. The out of state ortho, ordered a Tens Unit, which I liked and started me on physical therapy. When I came back home, continued the p.t. with an ortho hand specialist, but only got partial use of my hand back. It's frozen like a claw, thanks to the idiot rheumatologist.
For the past 5 years, I've been fortunate to have a neuro, psychiatrist, and pharmacologist in one Dr. For me, I needed a psychiatrist to help me thru the losses we experience and get to a better frame of mind that helps with quality of life.
Hope the best for you, hope you get an accurant diagnosis and the help you deserve. Take care, loretta

[ali12]

I was put on Neurontin (Lyrica) just after I was diagnosed with RSD. My Doctor put me on 75mg 3x Daily as he said my body probably wouldn't be able to cope with a higher dose than that because of my age.

The Neurontin didn't help me and I gained a lot of weight from it (I put about 30lbs on in the few months I was on it which isn't nice for anyone, let alone a teenager!!). Eventually, my doctor said there was no point in me being on it seeing as though it wasn't helping so took me off it.

I had horrible withdrawal symptoms when I started coming off it that lasted a few weeks. My doctor took me off it too quickly so I kept being sick, having panic attaks, shortness of breath etc.

I wish you the best of luck with the med and really hope it helps you!! As i'm sure you all know, everyone is different so it's hard to determine how you will react!

You're in my thoughts and please keep us posted when you can!

[heartbeatmom]

that is one wicked drug. I was taking it for pain a few years ago and I had pulled a back muscle, with my sister in law being a liceanced massage therapist I let her work on my back...with in moments I was in horrible pain...within about 40 minutes I had a bruise on my back the size of a dinner plate! She was shocked told me to call the doc right away something was wrong...saw my family doc, he thought I had a blood disease, saw a blood doc, he thought so too...ran tests....nothing wrong...he asked if my husband beat me! I told him no, he didnt belive me, asked if I sleep walk which I do...he then said I prob. fell down a flight of stairs and didnt remember! hah! who wouldnt remember that!!! Finally I found out it was a side effect of the neurontin! I look like I had been beat with a bat....after stopping the med I have never bruised like that again. So, watch for side effects.

[daniella]

Everyone responds different to meds. I know it can create anxiety to start a new meds with side effects but it may not happen to you and can be such a blessing in getting your life back. I think in general addressing concerns with your doctor and staying in the moment is very key. Just my 2 cents.

[Annie Poo]

1800 mg/day (600 mg three times a day). Like with many who take this, side effects for are significant, including weight gain, sleepiness, and brain fog. However, it works really well for the pain, particularly burning pain & deep shooting pains.