50% reduction in flares! :)

I am SO excited to say that only 3 days after starting Lyrica at 75mg 3x a day, I have seen a dramatic change for the better! This is so amazing for the first time in at least 5 months I was able to do laundry, clean the house, and cook, for most of the day! I had a few very mild flares but nothing compared to what I was having before. They still get me pretty good at night but I’m not waking up nearly as much as I was with taking gabapentin. The change has been incredible. Nothing that I was taking before worked, gabapentin, aspirin, lidocaine ointment (burned the heck out of my skin let me tell you!) my rheumotologist switched the gabapentin to lyrica for my fibromyalgia and I am so grateful he did! I feel like I am getting my regular life back :’) I hope this medication continues to work the way it is now! It took my insurance almost 2 months to approve it but thank god they did!

Congratulations Laurent85. That is great news!!!! I have been told before that Lyrica and Gabapentin were essentially the same and some people may not try Lyrica because Gabapentin didn't work for them. I have tried it but I had no such luck. Like yourself it took a few months to get approval from insurance .

Yay for you!!!!! Enjoy your new life :)

HI Laurent85.

So pleased to hear that Lyrica has really helped you. That was my experience, too. I was up with pain every night--sometimes all night as well as constant flares during the day. Lyrica reduced the intensity and duration of the flares and it has allowed me to sleep about 8 hours virtually every night. It truly was a wonder drug for me, too. Unfortunately, it can cause swelling for some people and that affected my feet--they were so swollen I could hardly walk after a few months even though I was on a very low dose. Adding a tiny amount of Cymbalta (about 8mg. or about 50 little beads) literally reduced the swelling within a couple of weeks.

Another thing, sometimes after a few months you made need a slight dosage adjustment--this is common for EM sufferers. It doesn't mean that it has stopped working. I only had to add 6.25mg/day more to achieve the same effect when at about 6 months I started relapsing. So try to stay the course--it's worth it.

Best wishes for a full recovery.



SO happy for you! Have you had any side effects? I have heard weight gain is common with Lyrica.

Thank you all! :slight_smile: I am way excited about it! I will definitely remember your advice Dragica if I notice the lyrica isn’t working as well later on. Alina that’s terrible it didn’t work for you :frowning: hopefully you find something soon that will help my dear! Dragica I tried cymbalta and has a horrible allergic reaction to it :frowning: Rachel yes I’ve noticed some side effects so far, my appetite has gone haywire… I’m always hungry, I mean ALWAYS. Which is very strange because I’m used to light snacking due to my food allergies. But never really big meals. And I’ve always been pretty lean because of vegan lifestyle and chasing around my 3 kids. But when my EM went crazy and pretty much turned me into a couch potato I gained some weight. But I feel like I could probably eat a zoo, or at least the vegetation there haha. Oh and def feel kinda spacey. After reading a lot of reviews on lyrica there are some things that concern me, but I think as of right now the benefits outweigh the risks. It’s so strange how dramatic the change is though! Like night and day! One day stuck on the recliner with flares, the next maybe 5 mild flares all day and being active!? I didn’t know a medication could do that!

Hi again.

One of the major side effects for Lyrica is weight gain. I've always been very active and slim. When I first started, I felt like eating all of the time--almost a like a compulsion. I gained about 10 pounds in a few months. However, while I do eat a bit more now, the craving has gone away and I am able to keep my weight under control now. The spacey feeling usually goes away after a while. However, I have found that it does interfere with my short-term memory. And if you are lactose intolerant, just realize that most dosages of Lyrica contain quite a bit of lactose in the filler. As my dosage increased, the pills made me so sick (and so did Lactaid because it is made with a mold I am allergic to) . I knew I would have to discontinue them unless a solution could be found. I called the drug company and they kindly told me that their 75mg capsule had only a fraction of the amount of lactose that the others have (go figure??). So I had a compounding pharmacy use the 75mg pills as a base for the dosage I needed. Anyway, it worked, and I am able to tolerate 106mg Lyrica/day.



Hi was on lyrica had been taking it for about 2years for my EM which ive had since age 3 i have it extremely bad and i never get a break from the burning bright red swollen feet and no medicine has ever helped hence why i ended up on lyrca.the first day that i took it it worked wonders even sleep that night with no fan never have i been able to do that.how happy was i after all these years but sadly it wasnt to last as the next night the fan was back on but i still gave the lyrica a go in hope.but over the course of some time i realised my feet was as bad as they was before if not worse and i was noticing different problems that never ever did i have before taking lyrica.as these problems become worse to the point of killing myself i had to stop taking it as i new it was the drug doing this to me as all the problems only started after taking this lyrica .it was ony about 2 months ago i stoped useing it and thank god im slowly geting back to where i was before all this.
The effects of what this drug has done to me 1}left ear swollen sore and badly deformed for nearly 2years in constant pain
2}was like a zombie unable to function wasnt able to even put one foot in front of the other to get dressed brush teeth or anything like that
3}my skin was horrid the whites of my eyes was yellow my skin also looked jawndis and yellow
4}my urine was faul dirty green colour with a very strange but strong smell to it
4}the feeling that i would rather be dead than be looking and feeling the way that i was
5}suicidal thoughs that wouldn’t go but got worse.

After stoping lyria to get it out of my system to see if things would then start improving and i would get better but for about roughly just over a month and a half it was hell all i was doing is sweating and feeling so hot unable to sleep or do anything that required motivation.but in the last few days i think i am finally starting to see things improving my ear is still not normal but its a little better than it has been for what seems like forever my sleep patterns getting better and im feeling different than i had been.
That shit was toxic well it was for me now im back to being pill free and as EM is caused by gene mutation no pills will ever help.other than to get the mutation fixed or to be able to replace the mutated gene with a new one thats brand new with no mutations.thats what i believe as for 35years nothing has ever helped me and trust me ive had many drugs and many treatments over those 35 years and never anything has worked.

I am so pleased for you!!!!! Lyrica is often prescribed (at least here in Canada) for the treatment of pain associated with Shingles. I'm not sure if I read your post correctly or not, but were you experiencing pain, or just severe burning???

In any event, I couldn't be happier for you.Anything else you may discover or experience would be very much appreciated by the forum, I'm sure.

Again, congrats!!!

Mexicanrose- Thank you doll! Oh the pain was excruciating ! A lot of heat, inflammation, burning, sharp stabbing pains, numbness, sometimes it would be like a bad sunburn other times it would look like a chemical burn and get all flakey/peeling gross. Here in the United states lyrica is rx as an anti epileptic for seizures, fibromyalgia, and is also used to treat neuropathic pain.

Dragica- oh wow I didn’t know about the lactose thing! I’m lactose intolerant as well, I take the 75 mg though so sounds like I’m in the clear :slight_smile:

Tina- that’s sounds so horrific! As far as your ear swelling, was that an allergic reaction to the medication? Has your dr tried anything new?

I believe it was so no my doctors ain’t worthy so I’m at square one again x

Hi, I heard Lyrica may help with pain during flareups but never heard of it reducing or limiting flareups..

Right!? It’s the weirdest thing I swear. I have an appt early March with a neurologist so I’m going to ask him about it. I’ve never had any medication do that. But yah I swear it was like the second day I think? I woke up hands and feet weren’t swollen as much, weren’t very red, and there was barely any pain! And normally thru out the day I have between 30-40 flares depending on what I’m doing (2 story house, cleaning, baths or showers , 3 kids, …) anything would trigger them it was horrible. And then bam! Barely any! It’s amazing. Today however I did notice a lot of intense side effects (I’m assuming…?) that have me a bit on edge. At the grocery store I was having a hard time breathing, couldn’t ffocus my eyes, everything was so much louder (still is) started having my left foot go numb so walking felt weird, after putting groceries in my car I went to return the cart and couldn’t figure out where it went… And I’ve never had just one part of me flare wih hands and feet it’s always been either both hands or both feet and last night was one toe?!
I definitely didn’t like all the weird stuff that I experienced last night so maybe might talk to my doctor about lowering the dose.

Hi Jimm and Laurent

Even at only 18.75 mg/day (I started at only 6.26mg/day because I am very sensitive to meds), the duration of the flares decreased as well as the pain. Although it took titrating to a higher dose to reduce the frequency as well as the pain. So Lyrica can reduce the flares themselves. I guess it all depends on where the error is in the sodium channel functioning. Clearly people with EM are not a homogeneous group -- just like people with autism or ADHD or many other diseases involving the central and/or peripheral nervous systems.