Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-26-2013, 08:49 PM #11
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Gabapentin (neurontin) works well for me. There were initial side effects but they went away.

Lyrica actually seemed to be working even better but I got confused and the doc doesn't want me in a million miles of it.
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Old 06-27-2013, 04:28 AM #12
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Originally Posted by FeatherMe2 View Post
I have many allergies and the day I went to my rheumatologist I ended up with laryngeal edema while waiting in his office. By the time I saw him, I could hardly speak. Thank goodness he had a handy needle of benedryl to inject. I had to quit lyrica that day and the next six weeks were not pleasant as I went through withdrawal. I forget how long I had been on it. The good part was losing over twenty pounds!
Oh I forgot the biggest side effect of Lyrica for me was massive weight gain! I gained a dress size in under a month, and that was on a diet lol!
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Old 06-27-2013, 10:22 AM #13
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Thumbs up It seems to be helping....

but doc nor pharmacist didn't mention weight gain. Will def have to watch that. I am diabetic on Metformin. I take so many pills it worries me about my liver. But I am told what I take is safe.

Thanks for the heads up. I wish all of us would wake up not just pain free but RSD free. That would be great. But wishing or hoping doesn't change a thing. So I will keep being positive and push thru this condition and fight for all I am.
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Old 06-28-2013, 11:30 PM #14
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I was on it a few years back prior to my surgeries and RSD. I had horrible weight gain on it. I begged to get off of it for that reason alone.
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Old 06-30-2013, 01:58 PM #15
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Has anyone had any experience with this drug. From what I've read it looks quite spooky. I tried Neurontin and had bad experience with it. Any feedback is greatly appreciated.
1st post here. Wanted to share my Lyrica experience. I came off Buprenorphine (Subutex), which I took for several years for a pain problem. Had about 15 days of very bad opiate withdrawals, but doable. Also taking between 1 1/2 - 2 15mg Tranxene average / day. Subutex must have masked Benzo tolerance withdrawal, as around day 20 my forearms started to burn badly, on and off in intensity. This went on for about 6 weeks, but improving ever so slightly and slowly. Warm showers, ending with cold water helped and I typically got relieve for a couple of hours.

I made the (in retrospect) mistake to wanting to be normal NOW, rather than waiting it out, since I was clearly getting better, slowly but steadily. Went to see my pain and "withdrawal" specialist. He prescribed Lyrica, 50 mg 3x / day, but said to try to take it only 2x / day. That should have rung a bell about what was about to happen.

The first 2 days on Lyrica were great. Took it 3x / day and burning was instantly gone and actually had very slight euphoric feeling. Great, I said to myself. Side effects were slight dizziness, keeping balance walking and at times difficulty reading. I thought these were initial side effects that would disappear with time. On day 3 I noticed hive like stinging little blisters, maybe 10 total in a small less than 1/2" area on a finger. Didn't relate it to Lyrica. Also, I tried to go down to 2x50 mg / day, but burning forearms started to come back, so I quickly took the 3rd dose. Then I noticed a slight rash on my upper chest. On day 4, subdued forearm burning came back, different from what I had, more like ice burning under the skin. Not very strong, but constant. Annoying, but tolerable.

Also, my mind now was in a constant fog, could function, but just didn't feel right. Was constantly hungry and ate like I hadn't in a long time all day long. Noticed some swelling in my legs that became painful while sitting down for prolonged periods of time.

On day 4, ice burning intensified, more hive blisters, badly fogged brain, edema in legs getting worse. At this time I decide to stop taking Lyrica. In approx. 1/2 day the forearm burning got very bad (worse than what I had when I seeked help) and now I also had it on the elbows and behind the knees. On day 5 I couldn't take it any longer and started to take the pills again. Day 6 and 7, burning got somewhat better, but side effects got worse and the hives were fire red and stinging badly.

I finally googled Lyrica side effects as well as withdrawals. Then I realized what I got myself into and decided to stop immediately no matter what. Had to do it by myself as I could not get a hold of my doctor and I simply didn't want to get deeper into it. I thought that since I only had taken it for 7 days it shouldn't be too bad. Wrong. The next 4 days were hell on earth. Intense continuous burning on forearms, some on legs, behind knees and on armpit, minor itching on scalp and around eyes, which also were very try, hot flashes and cold sweats. Hives disappeared as fast as they came on, which was the only positive. On top I had gained 10 lbs in one week and became hypertensive. Virtually no sleep. Showers no longer provided relief.

Today is day five. Last night I got about 3 hours of sleep. Woke up without burning symptoms, but as soon as I got up, it came back, but less intense. And so it has been so far half way through the day. I hope I am getting better already, but am very suspicious of a new intense onset at any time. My body's temperature control is out of whack, hot and cold at the same time is the only way to describe it. Skin is very sensitive to touch.

I realize that hopefully I am already recovering and that my story is nowhere near some of the very prolonged horror WD experiences other people describe. My point is that in my case it took no time for this drug to show its evil nature. Had I known, I would have never touched it. I am not saying it doesn't help some people and in a way don't want to alarm anybody. Just saying that before getting on Lyrica, know what may happen and how fast. I am aware that many people seem to tolerate it well and may have only minor withdrawals if they needed to get off (I doubt that part however) plus the benefits outweigh the downsides.
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Old 07-01-2013, 12:27 AM #16
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Originally Posted by KathyWP View Post
but doc nor pharmacist didn't mention weight gain. Will def have to watch that. I am diabetic on Metformin. I take so many pills it worries me about my liver. But I am told what I take is safe.

Thanks for the heads up. I wish all of us would wake up not just pain free but RSD free. That would be great. But wishing or hoping doesn't change a thing. So I will keep being positive and push thru this condition and fight for all I am.

From my post in the other current Neurontin thread.....

"Since I started Neurontin, I gained weight (I was already a big girl, but got bigger) and developed type 2 diabetes. As I just confessed, I am a big girl, definitely pretty sedentary for years with pain issues, and I do have a family history of type 2 diabetes, but the family members were all in their 70's when they developed diabetes.....I thought I had 30 years before it got" me. No such luck. Neurontin is known to cause increased blood sugars. Since being dx'd, I've done my own little science experiments too when I tried getting off Neurontin to try Lyrica. Bloodsugars were better without either drug, both Neurontin and Lyrica increased my bs's."
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Old 07-01-2013, 01:05 PM #17
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Thumbs up You know my blood sugar

levels have been wonky since I started Lyrica. They bottom out sometimes and really high for what I thought was an unknown reason, but now I have an idea on the resaon. I have my diabetes under control with a pill and diet and exercise. I really don't need a problem with blood sugars. Plus, on the weight issue I find I want to snack more, and after reading your posts about that I am heading it off. I do appreciate all of your replies. This forum helps keep me healthy. I actually pay people for what you guys do here. THANK YOU, THANK YOU, THANK YOU!
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