User Reviews for Gabapentin to treat Reflex Sympathetic Dystrophy Syndrome
Also known as: Neurontin, Gralise, Gabarone, Fanatrex
Gabapentin has an average rating of 5.8 out of 10 from a total of 22 ratings for the treatment of Reflex Sympathetic Dystrophy Syndrome. 41% of reviewers reported a positive effect, while 32% reported a negative effect.
“I was on gabapentin for over a year, it didn't work on my nerve pain. Found out pfizer had been misrepresenting it for nerve pain just for profit, and it makes any issues worse over the long term. I had severe side effects and difficulty getting off because of biologic addiction. Dangerous and useless drugs. Once I got off all meds and went back to nature cures and exercise I felt better. From wheelchair to mountaintop in six weeks!”
“I have Stage 3 CRPS/RSD. I have struggled with it for 6 years. It is now affecting my heart and lungs. Stage 2 is when it was noticed that it affected my mind. I have noticed while 300 mg tid (3xdaily) doesn't seem to help at all taking 900 mg bid (2xdaily) seemed to remove all my pain. However I have just started the process. I am concerned though as I read how many people don't seem to have the proper information on this lifetime disease that affect their lives. How many are aware there are stages? How many use compressions? Are you aware that it causes confusion, memory loss, high blood pressure,troubles breathing, nausea &, so much more? Do you know herbal methods like lemongrass oils can help neuropathy and headaches.”
“In 1999 I developed Reflex Sympathetic Dystrophy in my right foot, a complication of a surgical biopsy. In 2000, my GP prescribed Gabapentin. I tried it three times over two months. Result: Gabapentin did not improve my RSD pain at all, but did cause side-effects of a constant diffuse headache, spiking fevers, and drowsiness. I was sleeping more than 16 hours per day. My GP became enraged when I could not continue taking gabapentin. I know two reasons: Symbiotic marketing tactics (kickback to GP ceased when written Rx ceased). And attitudes taught by Pfizer (too long for here, but see UCSF Neurontin Litigation Archive). I kept a Patient Log of symptoms, diagnostics (Bone Scans), and treatments that succeed for me.”
“I was diagnosed with RSD on Tuesday. The doctor prescribed me Gabapentin. I'm only taking 1 pill per day for the first week, then taking 2 a day for a week, then moving up to 3 per day. So far, after only taking this pill once a day for 4 days I have seen a huge improvement with my affected foot. My range of motion has increased (with the help of physical therapy) and the constant burning pain has gone down from a pain level of 5 to a 2! The crazy electrical "zaps" and "zings" have been happening less and are not as intense. I feel way more calm and confident mentally and emotionally. However, the tissue, muscle, and deep bone aches are still severe, but I'm hoping that will subside as I start to raise my dosage. I like these pills so far!”
“I have RSD CRPS in my right arm and hand. I’ve had it for a year and a half and is severe. I was given 900 mg of Gabapentin after going to the ER it helped! I was then continued on it for 4 months then I noticed brain fog irritability swelling in legs and face and extreme drowsiness felt it interacted with Wellbutrin it was giving me headaches too.. went off of it for couple months tried zanaflex which helped a lot too but now on Gabapentin again at 600 mg a day. I couldn’t move my thumb and the allodynia was extreme . Extended release doesn’t work for me!!! It also increases my appetite”
“Gabapentin does not work for Rsd, It must be name brand Neurontin for this disease. It it so much more expensive but you will save yourself so much agony by not using the generic form of this medicine.”
“At first this drug helped my pain...however prolonged use of this drug caused many terrible side effects.... Serious and Scary..confusion, dizzy spells, nausea, buzz noise in my head, anger ,hostility, distrust, clumsy, & on &on.......”
Frequently asked questions
- Lyrica vs Gabapentin: What's the difference?
- Does gabapentin help nerve pain?
- Does gabapentin cause weight gain?
- How long does gabapentin withdrawal last?
Neurontin (gabapentin): “I have had RSD for 10 years and during my second year I used Neurontin and it took care of 95% of my pain for about 10 months and then one day it just quit working for me. Most other RSD patients that I talk to have the same result as I did. Every now and then I will hear that it works for someone that has been taking it for several years.”
“Have had RSD since 1994. Handle it with constant movement, Aleve and tylenol (don't use narcotics bc they slow everything down in your body and numbs your life!) Severe wrist injury caused onset of rsd. However, prior back and pancreas injuries put me way over the edge. With this combination of visceral injuries, my life has been difficult to say the least. Have handled it for years with numerous medications, meditation, biofeedback, and just pushing through the pain! Now my routine has all of a sudden become unbearable by affecting my sleep habits at 3:45 am. I wake in severe (10) pain with burning, sharp and dull pain in my arm, back, legs and stomach area. Used to take neurontin years ago (10yrs). Got 7 hrs of sleep and feeling some relief after taking 1 300 mg capsule added to my Aleve n tylenol (I'll take it!) Feel like a new person right now. Getting a break in that pain cycle is great! I know it won't last, but nice right now.”
“I had hip replacement surgery on my left hip in 2011. Surgery went fine, but I developed RSD in my left foot. It's a long story, with me thinking I was going to die from the pain, to going to the ER one day, on the advice of the home health nurse that came 3 times a week to my house, to my surgeon sending me to a Pain Management Specialist. He did a nerve block and most of the burning pain was gone. He put me on a gradually increasing schedule of Gabapentin, which works very well. If this awful thing had to happen to me, I'm very grateful that Gabapentin works for me and allows me to function. I have some days when I'm feeling a bit of burning, but it's not bad. Most days I'm fine. I have a brace-dropfoot-but I manage. Thank God!”
“I have had RSD for approximately 12 yrs. I have been on every med out there. I was taking Lyrica, Gabapentin, Cymbalta, Ultram all different times. This is from a work injury. I had nerve blocks, trigger point injections, steroid injections and acupuncture. I stopped all treatment yrs ago. I just dealt with pain. I haven't problems and managed to do anything possible. Just recently, I had a flare up and went back on Gabapentin.”
“I have had this since I was 19 and now am 32. The doctors I have had in the past always controlled my symptoms with narcotic pain medicines. This medicine worked for me at 600mg but they just increased the dose because it seemed like the pain was back in full force and worse but it is an amazing medicine. Just need to find the right dose. The only thing that I do not like is it makes my hormones race but my husband loves it.”
“I was recently diagnosed with Chronic regional pain syndrome (CRPS) Type 1/RSDS in my right foot, and the following regimen has alleviated most of my symptoms: - Gabapentin: 600 mg, 3x/daily - Tramadol (Ultram) ER: 200 mg/daily - Tylenol: 500 mg, 3x/daily; Tylenol potentiates the effectiveness of tramadol, and the combination thereof has proven efficacy in the relief of neuropathic pain. - Ketoprofen ER: 200 mg daily; they say all NSAIDs are alike, but for me, ketoprofen is the most efficacious. It also treats a wider range of pain conditions than naproxen, ibuprofen, diclofenac, meloxicam, etc. - Voltaren Gel 1% and Aspercreme with Lidocaine (4%): As needed. On the occasional day when pain is refractory towards my oral regimen, I apply these two topical analgesics.”
“I've got Lupus and RSD from a recent total knee replacement surgery. It's only been 8 weeks that I've been on it. I started out on 200mg 2x a day, then to 300mg 3x a day, then to 600mg 3 times a day and now 900mg 3x a day. Still waiting on some relief. Every week they keep raising it. Before I had the RSD it worked fine now it seems like I have to go higher. How much is to much??”
“I've had Complex regional pain syndrome (CRPS) in my ankle/foot for about 9 yrs now work injury. 1st thing tried was cortizone shots directly in my ankle then after diagnosis I was given ext release morphine an vicodin for break through pain. Due to one of my more unpleasant an turned out dangerous side effects I have which is the random feeling of lots of ants or spiders running all over my Foot & Leg biting me It feels so real that twice I ignored the feeling an found I was really being attacked by dozens of ants Doc decided to add Gabapentin and even thou that side effect has tapered off I had no real improvement I stopped taking it after 4 months. For about 5 yrs now I've been taking exalgo, dilaudid, flexaril, & cymbalta this combo has helped the most for me so far”
“I have mild Complex regional pain syndrome (CRPS) now, but it used to be quite severe, This is the only drug that removed my rest pain, I also got rid of most of the over and undershooting pain, and sensory disturbances have become less severe. This allowed me to focus on other things in life. Temperature disturbances have improved but I am unsure if this is linked. I had some side-effects in the beginning, drowsy and like my tongue would twist and words came out wrong, but that slowly went away. I was at 3600 mg and now I am down to 1500”
“Has been very helpful. However, I have experienced some side effects. I have had some problems with chest pain. After a heart cath, which was normal, I was started on metoprolol. No further cp. Also have problems with memory loss and an inability to focus, however was on lyrica for a while and was this was much worse then. Does eliminate all my pain but Overall, this is the only medication that has helped with the rsd at all.”
- How does gabapentin make you feel?
- Is gabapentin a narcotic/controlled substance?
- How long does it take gabapentin to work?
- Does gabapentin help you sleep?
“At 900 mg( this was my second try in 4 months) major insomnia last night. Major pain and swelling in left foot . Laid down all morning , I extreme pain not taking drug tonight. Informed nurse practitioner. It is Sunday. Will hopefully hear tomorrow. What options are left?”
Neurontin (gabapentin): “Have stage 3 RSD. This medicine has helped manage my pain as well as can be expected without the side effects.”
Neurontin (gabapentin): “No such side effects. Take 4 per day, every day.”
“Gralise, an extended release form of gabapentin, made me so sick that I could not attend school and function at all normally. It made me extremely drowsy and I couldn't think clearly.”
Neurontin (gabapentin): “I have had reflex sympathetic dystrophy syndrome for 11 years and I now take 2400mg of Neurontin a day with very little side effects. I would rate it a 6/10.”
“Took this med for 4 days. It made me dizzy and tired all the time. On the third night I started to have nightmares, which I never had before. So on to another med to try for my pain.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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Mayo Clinic Reference
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