Hi all, my dr started me on amytriptiline almost 4 months ago but I ended up gaining almost 20 lbs! It helped with sleep issues not sure how much with EM issues since my flare ups are only really bad on warm evenings. He recently switched me to Gabapentin however I’m reluctant to start for fear of side effects. I’d love to lose the weight I gained from the amytriptiline first. Has anyone had similar issues with these meds and will the Gabapentin cause weight gain as well? I’ve yet to try simple aspirin therapy and wouldn’t even know how many to take. For now I’m back on half an ambien for sleep issues but know I will need to take something as the weather starts to get warmer.
Hi, I gained 21 lbs on gabapentin, my diet and exercise stayed the same but still put on weight. I am not on any medications now but struggling to get the weight off. With the asprin I used to take 75mg daily (think they call them baby asprin in some countries) I wish you luck with the journey to find what’s right for you.
Hi Honeez, I don't know about the weight gain - not taking any meds to deal with EM. For help with sleeping problems you may want to check out Dr. Mercola (Mercola.com) - there is a spray available - Melatonin. Good Luck.
Hi Honeez,
I am no expert but I take just 75mg of aspirin and it helps a lot. I have often been tempted to up the dosage as I know people who take nearer 1000mg in a day. Perhaps I could vanish my EM altogether! But I am in my 70s with a 20 year history of taking NSAIDs for arthritis in my hands I am reluctant to take the higher dose. Incidentally, every cloud having a silver lining, the high level of pain in my hands vanished when I began having flares!
Nel
Aspirin increases the production of acid in your stomach - my doc. told me to take a Prilosec a day to counteract that acid-production. It seems to work - have been on Aspirin 2000mg a day for 6 months (to fight pericarditis).
Yes, I gained about 15lbs on Nortriptyline. As my doctor lowered the dosage my weight started to drop.
Keep in mind, it's better to feel good and than have a little extra weight on you. And the weight is TEMPORARY.
The more my medicine was lowered (in time as I felt a little better) the quicker the weight came off. Remember: It's just TEMPORARY.
Hey Honeez,
I swear this topic came with perfect timing for me. I literally emailed my specialist yesterday about how their new Px cream gave me instant painful EM flares. The cream was a mixture of nortriptyline, and my husband and I were wondering if that was what I reacted to.
I have been on Gabapentin for years now, but honestly have not seen much help with pain. Important to note that gabalentin can trigger itchy skin as a side effect, which I suffer from daily. The kicker is that I cannot ween myself off of gabalentin since the itching that I’ve gotten as a side effect from the gabalentin doesn’t cease. And I suffered a month of ‘the itchies’ because I was so desperate to get it out of my system and see if it would calm. Never did. Crazy!
But I wandered from your initial post (sorry!). Thank you for posting this topic, as you confirmed my hesitation of nortriptyline, and will keep trying to avoid using it. I certainly don’t want or gain any more weight. Lyrica caused me to gain quickly (as well as instant depression), and unfortunately for me, that weight was NOT temporary. It’s been a year and I still have it. Boo!
Good luck to you all! EM is a mean beast, isn’t she? : (
Pesto
I gained some weight with amitryptolline. However with gabapentin it just poured on! About 45 lbs over 9 months. I have been off it over a year and although now on effexor I haven’t gained weight. I have only been able to lose about 5lbs. Very frustrating. I am sure it is because all the meds keep it on…Inderal, topomax, effexor.
I have gained 40 pounds since coming down with EM last April. I blame it on lack of exercise. However I am on 900 mg of Gabapentin 3 times a day and started taking Cymbalta (the generic form) this last month. No weight changes. If I exercise by walking I bring on flares. I literally must keep my feet elevated all day long. If I just sit they turn purple and swell and feel tight. My doctor knows about this. I was wondering if anyone has done pool aquatics for exercise and if that brought on flares? I can't even walk very long without getting burning feet. I no longer shop except to buy small amounts of food. I can't stand to cook, I microwave everything or eat raw fruit and veggies. I too am on low dose aspirin. I think the Cymbalta is helping keep the flares at bay helping with my depression and I take Zanax every night for sleep. I have no EM pain at night while in bed.
CindyStyle said:
I gained some weight with amitryptolline. However with gabapentin it just poured on! About 45 lbs over 9 months. I have been off it over a year and although now on effexor I haven't gained weight. I have only been able to lose about 5lbs. Very frustrating. I am sure it is because all the meds keep it on..Inderal, topomax, effexor.
Just a comment on exercising in the water. I have bad arthritis and took to daily swimming 15 years ago. I decided that bits of me were not getting so well exercised so after 15 minutes swimming I would do 15 minutes exercising against the water. I developed EM suddenly 4 years ago and gave up swimming completely for a few months while I tried all ends up to work out what was happening to me, then I went back but because I was getting so little sleep it was more like 4 times a week. The pool is kept on the cool side which is wonderful for the EM. I also have Raynauds but while I flare in the water I have never had a Raynauds attack which never ceases to amaze me.
I am now non weight-bearing/bedbound following a serious leg break so the pool is way out of my reach and perhaps the most upsetting result of my accident. I would encourage anyone to use a pool if they have access to one. I do flare as I warm up but at the end of my session stay still in/under the water to leave the pool as cool as possible.
Nel
Hi Honeez - I gained weight very quickly with Amitriptyline and did not get beyond a 10mg as I had to take antibiotics that contra-indicated it. However, I almost felt it was vasodilatory as well as mind-altering so I did not rush to get back onto it when the infection cleared up. I am about to take Pregabalin so here goes! Please keep us posted. I am not sure but I am getting the impression that for those very few people that get something that has a really decisive effect, it seems they know pretty quickly. I would be interested to hear from anyone if that is so. It does mean one could trial something with bad side effects and not have to stay on it too long if it does not indicate quite quickly that it is working.
Nel, thank you for your comments on pool exercises. I will see if this helps me get more active. I just need to buy a larger suit to wear with my 40 pounds more of weight. Whatever gets me up and around will help. Thank you.
Nel said:
Just a comment on exercising in the water. I have bad arthritis and took to daily swimming 15 years ago. I decided that bits of me were not getting so well exercised so after 15 minutes swimming I would do 15 minutes exercising against the water. I developed EM suddenly 4 years ago and gave up swimming completely for a few months while I tried all ends up to work out what was happening to me, then I went back but because I was getting so little sleep it was more like 4 times a week. The pool is kept on the cool side which is wonderful for the EM. I also have Raynauds but while I flare in the water I have never had a Raynauds attack which never ceases to amaze me.
I am now non weight-bearing/bedbound following a serious leg break so the pool is way out of my reach and perhaps the most upsetting result of my accident. I would encourage anyone to use a pool if they have access to one. I do flare as I warm up but at the end of my session stay still in/under the water to leave the pool as cool as possible.
Nel
The pool is the best for me - no flares, and hands/feet, if warm before going in the pool always are cold when getting out. Now, I do lap swimming and that pool is kept cooler than most of the water therapy pools (used for water aquatics, mainly) because that water is typically warmer - in the low 80's vs. laps pools typically are 72 or less. Try both pools, if available, and see what works best for you. I used to run, bike, etc. - and have stopped those since the feet only burned and it wasn't worth the hassle anymore.
Hope this helps and you find some fitness relief, as well.
Myself said:
I have gained 40 pounds since coming down with EM last April. I blame it on lack of exercise. However I am on 900 mg of Gabapentin 3 times a day and started taking Cymbalta (the generic form) this last month. No weight changes. If I exercise by walking I bring on flares. I literally must keep my feet elevated all day long. If I just sit they turn purple and swell and feel tight. My doctor knows about this. I was wondering if anyone has done pool aquatics for exercise and if that brought on flares? I can't even walk very long without getting burning feet. I no longer shop except to buy small amounts of food. I can't stand to cook, I microwave everything or eat raw fruit and veggies. I too am on low dose aspirin. I think the Cymbalta is helping keep the flares at bay helping with my depression and I take Zanax every night for sleep. I have no EM pain at night while in bed.
CindyStyle said:I gained some weight with amitryptolline. However with gabapentin it just poured on! About 45 lbs over 9 months. I have been off it over a year and although now on effexor I haven't gained weight. I have only been able to lose about 5lbs. Very frustrating. I am sure it is because all the meds keep it on..Inderal, topomax, effexor.
Hello Honeez
My doctor has got me on the exact same medication, weight gain you say? 40 lbs in under 2 years !!! And as I can no longer exercise because of the flares the weight just keeps coming on no matter how much I try to watch what I eat... Unfortunately mine has not been temporary.. But I agree that it is better than being in constant pain and not sleeping.. not sure how much Gabapentin has helped (300mg nightly) but Effexor has been helpful for the sleep issues (50/75mg) at night
Hope this answers your question, Good luck!
Hi guys,
Thanks for the info on pool workouts. We have a public pool here locally but I am worried it is kept quite warm. Must check it out though, since like most of you, I can’t do much at all anymore either.
Legs elevated all the time over my heart, no small trips like shopping anymore. Constant pain, even with 3600 mgs of Gabapentin per day.
I’ve been trying to sloooooowly ween myself off of it since it doesn’t do much for pain. Nothing seems to.
Good luck today everyone and stay COOL!
Pesto
You’re the first one I’ve heard mention that “tight” feeling. I get the same thing and it drives me crazy. I think it’s a combination of the swelling, thickened skin and dryness. It’s especially bad if I soak my feet. If I put lotion on (can only use certain lotions) it eases some.