I don't know but I think it helped

General
1

Burning foot for six months. Tried everything. Only soaking foot in cool water and epson salt helped temporarily, three times a day...Was diagnosed with Erythromelagia at the VA...Was told it is a condition I have to live with! So I bought another bucket and epson salt...

However I had a slight stomach condition brought on by mild depression or hypochondria...Doctor prescribed 10 mg of Amitriptyline which alleviated the mild nausea but also stopped the burning and itching in the foot...after about one or two weeks...I have feeling fine for about three months now...I hope this is a help...

2

Hi, Pilgrim. I'm very glad the Amitriptyline helped both (or all) your symptoms! Here's a small tip if you ever need or want an alternative to the epsom salt soak but you can't do the soaking: Morton makes an Epsom Lotion that I've found helpful, and a lot more convenient than the bucket. Walmart usually carries it. Meanwhile, thanks for sharking your good news.

3

Hi Pilgrim.

I am so glad you have found something that has given you some relief! May I ask is it continuing to help? I looked it up and it says it is good for many things including neuropathic pain disorders and irritable bowel syndrome and it sounds like it has helped your EM and your stomach!!!! This is one thing I haven't tried and am considering asking my doctor about but I was hoping to hear from you first and see if it is still helping you.

Thank you

Alina

4

I don't always read the postings or chime in if I do, but this caught my eye (and I've tried a few things recently that seemed to have helped I want to share also)...

My mom takes ami for both cluster headaches and vulvadynia, which closely resembles neuropathic pain that is in women's genital region. Stress kicks it into high gear, as it does my EM.

My EM has improved a lot with adding a few key supplements that I read about online: Hesperidin (I have taken for mild swelling in my ankles also with success), slippery elm, and black cohosh (it used to help my menopausal hot flashes, so thought I'd try for the EM). I also take a high dose of vitamin E most days (800-1200 mg ... which bothers knowledgeable doctors since it has been known to increase risk of stroke ... I'm willing to chance it after being so miserable from EM); due to a sensitive gut, I take the "dry" form, otherwise I can't tolerate E at all.

I am among the more fortunate of those with EM -- it's stayed almost entirely on my face, ears, and chest, maybe (?) because I started looking for solutions relatively early and various testing indicates my immune system is fairly strong. I'm also among the most fortunate of those who have contracted Lyme -- I got the bull's-eye rash and knew what it meant, and began immediate, aggressive treatment (with both antibiotics and the key herbals recommended to treat Lyme ... there are great references online for these, and several helpful books). I was so successful killing off the Lyme and perhaps other tick-borne bacteria that I developed a horrendous head-2-toe yeast infection that took 6 weeks for my dr. and I to realize that it wasn't the Lyme rash!

And I've been dealing with Chronic Fatigue Syndrome (also known as CFS and CFIDS -- chronic fatigue/immune dysfunction syndrome) for a couple of decades. My immune system seems to have a delayed then overdone reaction to threats, and I rarely get sick with regular stuff such as colds or the flu. When I do, it can take 2 or 3 months for me to feel at all well again. Strangely, my EM tends to diminish when I'm dealing with this kind of "nuisance" illness, I just realized as I wrote this -- probably because I am so sick that all I can do is sleep, so I don't experience my usual, everyday stress.

As others have written, quite often, 1 or 2 regular-strength aspirin help decrease an acute EM flare. But the herbal supplements I mentioned earlier have made the biggest difference for me.

Well wishes to all who suffer with this torment ...

5

Hi Pilgrim and also to Lynn,

Pilgrim, I'm glad to hear the amitryptline (sp? sorry) helped you. I was on it for about 8 months about 8 plus years ago for migraine prevention. It did help my EM -- quite a lot, but did not help with migraines. I was happy to take it, but I had a very unusual reaction and was what I'd call 'slightly manic.' Not to say it felt bad, everything felt way too good. I did not recognize it. But my husband did. My doctor stopped it. It took him a couple of visits to realize I was pretty much bouncing off the walls with happiness. It was such a dissapointment to me. to have to come off it. That's a very, very rare reaction, so if it's working don't worry about it happening to you.

I have some cipramil, new box, bought last week, still untried, ready to start. It's an SSRI antidepressent. Although it's recommended for neuropathic pain and migraine prevention I'm too scared to take it yet, because it can also cause migraine pain. And my migraine pain now has cluster headache like features. And they are terrifying. I feel for your mum, Lynn. I'm just trying to get up the nerve to take a quarter of a tablet to start.

blue

6

I also take 10 mg Nortriptyline which is the same class of drug. I have taken it for about 3 years. Because I take such a low dose I thought I might try going off to see if it made any difference and it did in a very bad way. . After about 5 days without it my night time flares started with avengence. Iam now back on it and happy to says things have settled backdown. I am not pain free but am much better when taking it. They say it also helps with depression but I cannot say one way or the other on that. I think everyone responds differently but it might be worth a try.

7

I've been on Nortriptyline for about 15 months -- started at 10 mg/day and gradually increased to 40 -- along with Gabapentin for about a year (300 or 400 mg / day). The combination seems to be keeping my peripheral neuropathy under control, and I think it also helps with my EM. I was glad the neurologist prescribed both because I'd read that the combination is measurably more effective than either one alone. And at that level, the side effects are mild. (Blue, I wonder if a lower dose of Nortriptyline would have worked about the manic episodes? It's impressive that just 10 mg works for Norahs!)

LynnV

8

Hi Lynn, Thanks for the info on Epson lotion,sounds good. Still having good luck with the burning but plan on gradually tapering off the amitriptyline.

LynnV said:

Hi, Pilgrim. I'm very glad the Amitriptyline helped both (or all) your symptoms! Here's a small tip if you ever need or want an alternative to the epsom salt soak but you can't do the soaking: Morton makes an Epsom Lotion that I've found helpful, and a lot more convenient than the bucket. Walmart usually carries it. Meanwhile, thanks for sharking your good news.

9

Hello Alina, I could go on and on about this wonder drug...Now how can I tell you briefly??

"When I retired 12 years ago wife and I went to Alaska in RV for a few months...When I got back I said jokingly,"retired early,went to Alaska-now I can die happy". Just a joke you see...Then a week later I got very sick from shell fish and was nausea 24 hours a day for over a month!!! Had multiple test on stomach which showed nothing...Then the doctor asked if I had any life changing drama? I told him I just retired etc.. He said I think you are mildly depressed from 50 years of working and then not....He prescribed 25 mg of amitryptline...The very first pill stopped my nausea!!!!! I took it for 8 yrs and then stopped...Now I am taking 10 mg for another nausea spell...;and it stopped the foot burning! The doctors keep telling there is better stuff out there but I only want what works....

Alina Delp said:

Hi Pilgrim.

I am so glad you have found something that has given you some relief! May I ask is it continuing to help? I looked it up and it says it is good for many things including neuropathic pain disorders and irritable bowel syndrome and it sounds like it has helped your EM and your stomach!!!! This is one thing I haven't tried and am considering asking my doctor about but I was hoping to hear from you first and see if it is still helping you.

Thank you

Alina

10

Hi Blue, Hope that new drug Ciperil helps you...Did not bounce off the wall with Amitryptline because it was only 25 mg down to 10.....I read they give 50 to 100 mg to bed wetters-yikes...Take care.

blue said:

Hi Pilgrim and also to Lynn,

Pilgrim, I'm glad to hear the amitryptline (sp? sorry) helped you. I was on it for about 8 months about 8 plus years ago for migraine prevention. It did help my EM -- quite a lot, but did not help with migraines. I was happy to take it, but I had a very unusual reaction and was what I'd call 'slightly manic.' Not to say it felt bad, everything felt way too good. I did not recognize it. But my husband did. My doctor stopped it. It took him a couple of visits to realize I was pretty much bouncing off the walls with happiness. It was such a dissapointment to me. to have to come off it. That's a very, very rare reaction, so if it's working don't worry about it happening to you.

I have some cipramil, new box, bought last week, still untried, ready to start. It's an SSRI antidepressent. Although it's recommended for neuropathic pain and migraine prevention I'm too scared to take it yet, because it can also cause migraine pain. And my migraine pain now has cluster headache like features. And they are terrifying. I feel for your mum, Lynn. I'm just trying to get up the nerve to take a quarter of a tablet to start.

blue

11

Hi Norah, Thanks for the information.. If the Amity stars to falter I know now what to try....and 10mg seems like a nice small dose...Thanks Take care.

Norahs said:

I also take 10 mg Nortriptyline which is the same class of drug. I have taken it for about 3 years. Because I take such a low dose I thought I might try going off to see if it made any difference and it did in a very bad way. . After about 5 days without it my night time flares started with avengence. Iam now back on it and happy to says things have settled backdown. I am not pain free but am much better when taking it. They say it also helps with depression but I cannot say one way or the other on that. I think everyone responds differently but it might be worth a try.

12

Most of the drugs mentioned in this thread require a weaning off, in order to avoid miserable side effects. For me, it usually takes twice as long as a dr. may recommend, so for some time, I plan according to what has worked for me. Even low doses often need to be weaned off of ... I've been on one antidepressant or another for about 20 years. None made any diff in hot flashes or EM, but I don't function without. I dread every change, as my body adjusts over time so that one isn't effective. Paxil has the rep of being the absolute worst, but I found Prozac extremely tough because I had to be completely off everything for almost a month before starting the new drug (which is no longer on the market).

I've been on Effexor XR for maybe 7-8 years now (the generic, due to $$$, and yes, I can tell the diff, especially with this class of drug). Supposed to help with all kinds of things besides depression, but can't say it has for me. If I let myself run out or my refill approval is delayed, day 3 is H*LL. Hallucinations, tremors, irritability, hyper. That's the typical length I have been able to survive without the others, with sudden stop.

Sorry to get a bit off-topic, but wanted to share what some may not be aware of.

13

I was on amitriptyline for awhile, but the dry mouth that accompanied it in our dry climate (and having anhidrosis) made it unbearable, so I had to quit taking it. I'm now on 300mg Zonisamide at night which has helped me. That level was quite effective for me, but my body reacted to it. Apparently, for me at least, the doc tried to get me up to that level too quickly, so I had to back own to 250, but over the course of about 2 weeks I was able to slowly work up to 300 again. Glad the amitriptyline is working for you!

Mona

14

Wow! Great news it works so well for you Pilgrim!

I will definitely ask my doctor next appointment if he thinks it is something we should try.

Thank you so much for sharing Pilgrim.

Take care,

Alina

Pilgrim said:

Hello Alina, I could go on and on about this wonder drug...Now how can I tell you briefly??

"When I retired 12 years ago wife and I went to Alaska in RV for a few months...When I got back I said jokingly,"retired early,went to Alaska-now I can die happy". Just a joke you see...Then a week later I got very sick from shell fish and was nausea 24 hours a day for over a month!!! Had multiple test on stomach which showed nothing...Then the doctor asked if I had any life changing drama? I told him I just retired etc.. He said I think you are mildly depressed from 50 years of working and then not....He prescribed 25 mg of amitryptline...The very first pill stopped my nausea!!!!! I took it for 8 yrs and then stopped...Now I am taking 10 mg for another nausea spell...;and it stopped the foot burning! The doctors keep telling there is better stuff out there but I only want what works....

Alina Delp said:

Hi Pilgrim.

I am so glad you have found something that has given you some relief! May I ask is it continuing to help? I looked it up and it says it is good for many things including neuropathic pain disorders and irritable bowel syndrome and it sounds like it has helped your EM and your stomach!!!! This is one thing I haven't tried and am considering asking my doctor about but I was hoping to hear from you first and see if it is still helping you.

Thank you

Alina

15

I don't know if what I was told is true, but my doctor told me not to put my feet in cold water or use ice packs as it could damage the nerve endings. Just something to check into. I did try putting room temperature lotion on my feet and it did help enough to let me fall asleep.

16

Your doctor was right. We all do it at the start since the feeling of relief is so good, but it is not a good idea and can lead to ulcers and even gangrene as the skin breaks down. Far better to use a cold wet flannel on feet and immediately put them in front of a fan - or do as you do and use a lotion.

17

“Trying to get up the nerve to take a quarter tablet” made me smile. Whenever I am given a new medicine to “see how it goes” it sits on the shelf for days/weeks while I try to get up the courage to try it. I chop tablets into halves and then quarters and then still put them back in the packet to wait until I feel awful enough for my desire for relief to overcome my fear!


blue said:

Hi Pilgrim and also to Lynn,

Pilgrim, I'm glad to hear the amitryptline (sp? sorry) helped you. I was on it for about 8 months about 8 plus years ago for migraine prevention. It did help my EM -- quite a lot, but did not help with migraines. I was happy to take it, but I had a very unusual reaction and was what I'd call 'slightly manic.' Not to say it felt bad, everything felt way too good. I did not recognize it. But my husband did. My doctor stopped it. It took him a couple of visits to realize I was pretty much bouncing off the walls with happiness. It was such a dissapointment to me. to have to come off it. That's a very, very rare reaction, so if it's working don't worry about it happening to you.

I have some cipramil, new box, bought last week, still untried, ready to start. It's an SSRI antidepressent. Although it's recommended for neuropathic pain and migraine prevention I'm too scared to take it yet, because it can also cause migraine pain. And my migraine pain now has cluster headache like features. And they are terrifying. I feel for your mum, Lynn. I'm just trying to get up the nerve to take a quarter of a tablet to start.

blue

18

Hi tired,

My specialist also said no ice packs. I used to rest the soles of my feet on them but one day I mentioned I was doing so and he warned me not to as it could cause nerve damage. Since joining this forum I've found out that soaking affected areas can cause severe skin problems etc.

When skin is burning often the first thing I will try is wiping myself down with a wet cloth and then sitting in front of the fan. As nell said, this can be helpful.

Blue

19

Hi Nel, i had to laugh as I do the same thing. I still haven't started the med. Just as well. I've had a bad migraine again for past two days and if I'd taken the med and then gotten the migraine I would have thought it was the meds fault.

Blue

Nel said:

"Trying to get up the nerve to take a quarter tablet" made me smile. Whenever I am given a new medicine to "see how it goes" it sits on the shelf for days/weeks while I try to get up the courage to try it. I chop tablets into halves and then quarters and then still put them back in the packet to wait until I feel awful enough for my desire for relief to overcome my fear!



blue said:

Hi Pilgrim and also to Lynn,

Pilgrim, I'm glad to hear the amitryptline (sp? sorry) helped you. I was on it for about 8 months about 8 plus years ago for migraine prevention. It did help my EM -- quite a lot, but did not help with migraines. I was happy to take it, but I had a very unusual reaction and was what I'd call 'slightly manic.' Not to say it felt bad, everything felt way too good. I did not recognize it. But my husband did. My doctor stopped it. It took him a couple of visits to realize I was pretty much bouncing off the walls with happiness. It was such a dissapointment to me. to have to come off it. That's a very, very rare reaction, so if it's working don't worry about it happening to you.

I have some cipramil, new box, bought last week, still untried, ready to start. It's an SSRI antidepressent. Although it's recommended for neuropathic pain and migraine prevention I'm too scared to take it yet, because it can also cause migraine pain. And my migraine pain now has cluster headache like features. And they are terrifying. I feel for your mum, Lynn. I'm just trying to get up the nerve to take a quarter of a tablet to start.

blue

20

If this group has done one tremendous thing it is to discourage people from soaking in cold water!