I’ve just been prescribed gabapentin for EM, but am afraid to use it. I have lymphedema as well as EM and Raynauds. In order to manage my lymphatic condition I work diligently to maintain a healthy weight. I’m not vain, the more of me there is to fill with lymph, the worse my condition becomes, so potential weight gain could be physically devastating. The EM has already increased my swelling as my body responds to the flares. I plan to talk to my doc once this crazy blizzard clears, but I can’t see this drug being a viable option in conjunction with my other chronic, progressive, incurable condition. Is there anyone else in this boat with me? I’m feeling overwhelmed by it all.
I don’t have lymphedema, but I have used gabapentin in the past (3600 mg daily) and never had any problem with weight gain or water retention. I did have blurred vision, dry eyes, and some difficulty urinating, but that was it. I’m now on Cymbalta (60 mg) and Lyrica (450 mg) daily and gradually increasing my dose. My EM and Raynauds are more stable now than at any time since last May when I was diagnosed. I flare red but rarely burn. I don’t know if it is the switch from gabapentin to Lyrica and Cymbalta or if it is because I am being ultra careful to stay off my feet, out of hot places, and elevate my feet as much as possible. But I am taking nothing for granted and am determined to continue managing my EM to my utmost. I know full well it could rear its ugly head in an instant. If I have to, I won’t leave the house next summer.
Everyone reacts differently to drugs. I think the only way to be sure is to try gabapentin. Start with a very low dose and work up slowly, monitoring your response. Manage your condition as best you can by giving your feet lots of TLC. If you can’t tolerate gabapentin, you might consider Lyrica. Good luck. I’ll keep my fingers crossed that you find some relief. EM and lymphedema is a double whammy. Hang in there.
Beth
I don't think that there is anything wrong with trying Neurontin for your condition. My mom has EM and didn't respond well to Neurontin, but some do. It may help your Reynolds and some who take it with types of EM that include chilling seem to respond pretty well to it from what I've heard. If all you had was EM you still might even try to take it and see what the results are. Just because my mom primarily has EM and little else in the way of symptoms, doesn't mean your system would not respond to Neurontin.
So it sounds to me like it's worth a try. But of course I'm not a medical professional, so all the usual disclaimers apply.
My concern is more the side effects with my lymphedema. I don’t know yet if mine is primary or secondary, as I was just diagnosed. Having the pain from EM helped would be wonderful, but not at the expense of having pain and disability from lymphedema worsening. I would take it if I didn’t have the other condition, I just feel like all my docs need to coordinate and agree on a treatment that best manages all without making the other worse. Thank you for replying. I hope I can take this, or something to help. This came on like gangbusters and I feel a bit lost in the fog of pain.
For me personally, gabapentin was a god send! I was literally going insane until I tried it. Infact I actually literally cried an hr after taking my first dose because of the total relief. I think the biggest problem with weight gain on this med is that it makes you crave sugar or sweet foods. And in my case at least, I’ve found I crave these “bad” foods at night. I’ve had to have some restraint and force myself to reach for an orange or apple instead of that Nanaimo bar I really want. Lol my advice is try it. You can always go off it if it’s causing problems. But you won’t know how your individual system will respond until you try right. …