Gabapentin

General
1

Hello again!

So (as you may already know if you just read my last post :P ) I've been officially diagnosed!

My doc (rheumatologist) ran a number of tests to look for a secondary cause, but everything came back negative. So it seems that I've got primary, idiopathic (no known cause) EM.

It's strange - no one else in my entire (extended) family has anything like this, or any really strange/rare conditions (that I'm aware of). I am seriously and truly an anomaly in my family! I seem to baffle doctors when they ask about family history and all I've got is psych/addiction and diabetes!

I have a milder form of the disease (especially relative to many of the people here). My flares are often situational, and can last for hours, but not days. It can be daily, but it's definitely intermittent. I just feel really uncomfortable when it happens. I don't want to stand, or touch anything. I just want to cool it until it goes away. Even when I hold something cold, the second I remove that, I feel the burning right away. The hands make manual work hard, and the feet make standing, or exercising, hard. I can push through it, generally, but eventually, if it's been a few hours, I just want to cry. Moreso because I just want it to go away! And nothing I do can make that happen - only time. That depresses me the most, I think. Just that, there really isn't anything I can do. I can't control when it happens (it does, sometimes, happen when I'm cold too), and I Can't do anything to stop it. I feel like it's gotten worse over the last year, but certainly not to a disabling, but I can't help but worry that it'll continue to get worse as I age.

[On a side note - did anyone have trouble with pregnancy? That's a HUGE concern for me. I'm 25, and next year, when I'm done with school, we want to start trying to get pregnant. But in the back of my mind, I'm freaking out that it's going to be horrible. The symptoms will become worse. Or even that, after I'm done, things get permanently worse. As in "if i hadn't gotten pregnant, this wouldn't have happened" kind of thing. I know a girl who developed sarcoidosis after she had kids. I'm sure it would have happened anyways, but that association of "it started once I had kids" is still stuck in my mind. Obviously, I can't predict that. And I shouldn't (and won't) base my choices on that. But I'm curious about what happened with others...]

Ok, back the the main topic!! My doctor put me on Gabapentin. I'm to start at 100mg at night, and over the next few weeks slowly work my way up to 100mg 3x/day. What I'm wondering is, for those who take this, what does it feel like? From what I understand, you still feel the burning - is that right? But the pain is less? I'm having a hard time figuring this out, since, to me, the pain is directly related to the burning - like the burning is one of the more painful things for me. So how could I feel the burning but less pain? Does that make sense? I hate the swelling, I hate that it's almost impossible to find shoes b/c I need them to "accommodate" my feet during swelling, but aren't too big when I'm "normal". I hate the way my skin feels. But I hate the burning most of all. That, to me, = pain. So what could I maybe expect to feel when I'm taking Gabapentin?

Thank you!!!

2

When I first had EM I wish someone had told me to try the Prednasone trial. I have head there is about an 80% chance of remission with the use of 80mg per day for 6 weeks. However it must be taken within the first 7 months of receiving EM. I tried it 2 years after EM and had good betterment but no remission.

Prednasone is a nasty drug and not to be taken lightly. The way I looked at it. The chance of remission was worth the risk. If you are on this for 6 weeks, it will take you 8-12 weeks to get off.

Oh, I am an engineer and not a doctor so I suggest you talk to your doctor. Remember,you are the boss...Not your doctor. Jim

3

Hello Leelee, I haven't had gabapentin but was given pregabelin which is a similar drug and, according to my doctor here in Britain, works at lower doses to gabapentin. The side effects are very similar too.

I only had a very low 25mg dose but I found it brought no relief of any description. Tried doubling the dose but made things even worse. The side effects I experienced were; very dry mouth, feeling unsteady, especially first thing in morning and I a lot of trouble concentrating (wouldn't attempt driving). It also caused my feet and ankles to swell which I never had before except during a flare. The swelling has stayed with me ever since I stopped taking the pills last November. Not quite as bad but still there. I am now on Amiltryptyline which has helped me for the sleep sideof things and I also take paracetamol in the evening and before bed which helps some too I believe.

Like you I have primary EM (although I haven't had any tests done) and don't seem to have the same dreadful pain that lots of members here describe. And my flares last hours rather than days too. I seem to have reached some sort of plateau just now, with now and then a day and night flare free. At the beginning of my EM I could have one foot flaring and just as it subsided the other foot would start but it doesn't happen often now. I had what I would class as a bad flare last night with the stinging pain and burning more fierce than usual that took 6 hours to subside. Unlike you I find standing on cold tiles better for me. If I am sitting I smother feet in thick moisturiser and turn the fan on my feet which cools the cream & therefore helps the burning to a degree. Trouble is, I get restless legs during a flare and sitting down makes it worse.

I see that you have EM in your knees and hands too and you also have Raynauds which makes things even harder for you. And yet you say you have a milder form relative to others on here. You are way off worse than me and when I am finding my EM hard to bear at times I try and think of all the youngsters on here like you that have such a dreadful time with their symptoms.

Can't comment on your pregnancy question as I am now old and grey. I wish you much joy when you have children. I can only hope that when you do, your symptoms go into remission at least during pregnancy and don't get worse after. Hope others on here can help with that question for you.

4



tillyp said:

Hello Leelee, I haven't had gabapentin but was given pregabelin which is a similar drug and, according to my doctor here in Britain, works at lower doses to gabapentin. The side effects are very similar too.

I only had a very low 25mg dose but I found it brought no relief of any description. Tried doubling the dose but made things even worse. The side effects I experienced were; very dry mouth, feeling unsteady, especially first thing in morning and I a lot of trouble concentrating (wouldn't attempt driving). It also caused my feet and ankles to swell which I never had before except during a flare. The swelling has stayed with me ever since I stopped taking the pills last November. Not quite as bad but still there. I am now on Amiltryptyline which has helped me for the sleep sideof things and I also take paracetamol in the evening and before bed which helps some too I believe.

Like you I have primary EM (although I haven't had any tests done) and don't seem to have the same dreadful pain that lots of members here describe. And my flares last hours rather than days too. I seem to have reached some sort of plateau just now, with now and then a day and night flare free. At the beginning of my EM I could have one foot flaring and just as it subsided the other foot would start but it doesn't happen often now. I had what I would class as a bad flare last night with the stinging pain and burning more fierce than usual that took 6 hours to subside. Unlike you I find standing on cold tiles better for me. If I am sitting I smother feet in thick moisturiser and turn the fan on my feet which cools the cream & therefore helps the burning to a degree. Trouble is, I get restless legs during a flare and sitting down makes it worse.

I see that you have EM in your knees and hands too and you also have Raynauds which makes things even harder for you. And yet you say you have a milder form relative to others on here. You are way off worse than me and when I am finding my EM hard to bear at times I try and think of all the youngsters on here like you that have such a dreadful time with their symptoms.

Can't comment on your pregnancy question as I am now old and grey. I wish you much joy when you have children. I can only hope that when you do, your symptoms go into remission at least during pregnancy and don't get worse after. Hope others on here can help with that question for you.

5

Wish I could answer your pregnancy question, but I developed EM long after having my two kids. I do know that taking care of my babies, particularly the lack of sleep, was very hard on my body and had negative effects on my health in other regards. However, the sacrifice was well worth it. I cannot imagine life without them!

I take 300mg Gabapentin at bedtime. At first, it relaxed me and helped me sleep better. I don't know that it ever really helped with the EM pain, and now it doesn't even help with the sleep. Some people keep upping the dose when it becomes less effective, but not wanting to be drug dependent I plan to go off of it this week.

I also have a milder form of EM. It started out in my hands and the bottoms of my feet. It spread to the tips and tops of my toes. I can tolerate about 5 minutes in the heat before starting to flare, and the flaring can be so bad that I blister on the tips of my toes. At first, walking was almost always painful and my hands were really tender and painful too. It hurt to cut veggies, sweep the floor, etc. But, since beginning to take aspirin (near the end of last year), I am doing much better (even though the EM has progressed). If I avoid heat, I function pretty normally throughout the day, though I do have difficulty standing still and so have to keep moving when on my feet. I almost always have trouble in the late afternoon and evening. I sleep w/o covers and use a fan. And, I can no longer wear closed toe shoes. Oh, and I also get the swelling along with the burning, stinging pain. I wake up each morning with swollen hands and feet; they don't burn, but they tingle. At night or when it's hot, they begin to itch and then swell, burn and turn shiny red.

Yes, it's hard to find shoes that work! I spent months purchasing and then returning shoes. Before I knew it was EM, I would try on shoes (cold) and think they were okay. Then I would wear them for a little while and be in pain. Now I know to purchase high quality open-toe shoes. Soft soled sandals work really well for me and accommodate the swelling too.

6

Hello Leelee,

This EM has made me into a liar. Having just recently answered your Gabapentin discussion and said that my symptoms had been not so severe recently and that I sometimes had a flare free day/night, I have now just had 3 days/nights of almost constant flaring with all that accompanies it. It has come back to bite me and show me who is boss !

15 minutes ago (2.50pm here in Britain) I thought I might be able to grab a nap but my big toe is on fire now. Talk about never telling the devil what is in your mind.

Please keep us posted on here how you get on with the trialling of the gabapentin. It is always good to hear when someone gets some relief from their medication. Hope it will apply to you.

Tilly

7

Hi, I've been on Gabapentin for a while, I really had to increase the dose recently becasue my symptoms got much worse BUT to me Gabapentin has been a lifesaver (or should I say legsaver) because my EM had got to the point where I didn't want my legs, they caused too much pain and I felt like they were useless and would've probably considered amputation if I actually thought it would help. (I'm sure there are others that have felt like this over time.

I now have far less pain thanks to the Gabapentin. (The burning is part of the pain, to me it was the worst thing to deal with) The burning is much much better than before, I still get constant feeling of tingling or the feeling like I have a million bugs crawling around inside my legs but that I can deal with. I also get some flares where the burning is intense but they come far less often than before (I felt like I was flaring almost constantly before)

Sorry Iseem to have rambled, I hope you understand what I mean.!

I would reccomend giving it a try, increasing the dose if no inital relief. I would try anything that was offered if I thought there was a chance it would help me.