Additional info from a Newbie:~)

Welcome New Member Introductions
1

Hi all,

Thanks so much for the warm welcome. I'm guessing this is the correct place to post and not in the blog category? Let me know if this belongs elsewhere:~).

I should start by mentioning that I have 3 youngish kiddos (3, 9, &12) so I don't often have much time to post. I'm pretty frightened and will give you a little background. I never liked cold weather but moved to MI after falling love and starting a family with a Michigander. I found out why is disliked cold weather when i was diagnosed with Raynauds, 8 years ago, almost immediately upon moving here. I now live in a lovely area, my kiddos are thriving, and my husband loves his job. I've been trying to control my raynaud's (and migraines) with calcium channel blockers until recently. I've been able to stay active though I avoid being too still outside....until about 4 months ago.

Backing up just slightly to when I think the EM symptoms started...

I had Morton's Neuroma surgery when I moved here (2007) and my toes swelled like crazy afterwards. I couldn't wear socks, my feet would alternate between burning hot then freezing. I thought it was all raynauds though the docs even tried me on gout medication. The swelling subsided after months and didn't return until this year. I did have nerve conduction studies (fun!) and arterial studies and all were normal.

This past October my toes swelled again to the point I couldn't wear shoes. I thought the problem was that my toes were simply too cold so I kept trying to warm them. They were turn bright red and I'd be running to my bedroom to elevate my feet. I even found that warm baths and showers (two of my favorite things) became very painful. Docs upped my verapamil (started the verapamil ~3 years ago for migraines) and then switched me to nefipidine.

I had to stop exercising and I was just a mess. I stayed up googling the symptoms and found EM on my own. I asked my primary physician) (who thinks I'm crazy and is confused by these symptoms) to refer me out. I also was aware I'd had lots of random nerve twangs my whole life and my fingers would often go burning hot on the right side. Actually, it's usually just two of the fingers. I git the rhuemotologist to read about EM and she agreed that it's the correct daignosis. She told me that I'd just have to make a lot of lifestyle adjustments. I provided info showing that calcium channel blockers can sometimes cause EM, so I've gone of all raynauds/migraine medication.

My toes got better and I had no EM attacks for about 10 days and then they returned this past wednesday (perhaps stress related). My toes aren't currently swollen but the evening time burning and pain is back. Rheumotologist is lovely but highly unfamiliar with EM so am trying to get to Mayo.

I'll be back soon with lots of questions but wanted to provide my experience. Happy to answer questions/share more info.

2

I am so sorry Dorthy. EM can be a tricky one. It often changes on its own for the better or worse so it’s difficult to know when a med is helping or hurting most of the time until you have been on or off it for a few months. That is unless the changes are dramatic.
If you go to the tool box at top of page there is a great deal of information on EM there . It’s very helpful for those new to EM and even has some new things for those more familiar.
There are many different meds that may help. It’s always a trial and error thing. I would just bring a print out of the possible treatments for EM to your doctor and you and your doctor can start there .
I hope you find something that helps you soon.
Take care

3

Hi Dorothy, I am so sorry to read your account of your journey to diagnosis. I can only echo Alina’s words in reply. As you have some time to read member profiles, you’ll be amazed at how many people have had similar experience.

Hearty applause for educating your physicians! We all need to take time to do that, so other people can’t find knowledgeable doctors more quickly than we did.

4

Hi Dorothy.

Welcome to the group. There some very kind, caring and knowledgeable people in this online community. Feel free to ask questions and to share info.

I, too, started with Raynaud's after moving to a cold climate. After having phlebitis, secondary to another medical issue, and using ice packs, EM really reared its head (but I didn't know it then). ANd treatment for that e medical condition in my foot caused massive swelling and phlebitis again. And again ice packs were recommended. After that the EM really flared and it has worsened over time. However, after trial and error, I have some relief from 2 medications. Many people find taking smaller amounts of several medications works better than a larger amount of a single medicaiton. Many of these meds seem to work in synergy with one another (e.g., Lyrica and Cymbalta). AND some of us find that dividing doses over the course of a day works better that taking a larger dose once or twice a day. But everyone is different, so one just has to be brave. I recommend starting at the lowest dose possible and working your way up until you reach an unwanted side effect. A compounding pharmacy (one that custom compounds medications into smaller or larger dosages or creates combinations) is a great resource for sufferers of EM or any chronic pain.

Best of luck to you,

Cheers,

Dragica.

5



Dragica said:

Hi Dorothy.

Welcome to the group. There some very kind, caring and knowledgeable people in this online community. Feel free to ask questions and to share info.

I, too, started with Raynaud's after moving to a cold climate. After having phlebitis, secondary to another medical issue, and using ice packs, EM really reared its head (but I didn't know it then). ANd treatment for that e medical condition in my foot caused massive swelling and phlebitis again. And again ice packs were recommended. After that the EM really flared and it has worsened over time. However, after trial and error, I have some relief from 2 medications. Many people find taking smaller amounts of several medications works better than a larger amount of a single medicaiton. Many of these meds seem to work in synergy with one another (e.g., Lyrica and Cymbalta). AND some of us find that dividing doses over the course of a day works better that taking a larger dose once or twice a day. But everyone is different, so one just has to be brave. I recommend starting at the lowest dose possible and working your way up until you reach an unwanted side effect. A compounding pharmacy (one that custom compounds medications into smaller or larger dosages or creates combinations) is a great resource for sufferers of EM or any chronic pain.

Best of luck to you,

Cheers,

Dragica.

Hi again--the SAVE function deleted some of my posting. I wanted to add that Dr. Jay Cohen, MD is a good resource as he has EM. You can find some of his online resources at: http://medicationsense.com/articles/2012/emtreatment.php

Cheers,

Dragica

6

Hello Dorothy -- Your letter reminded me of my foray into this world of burning hot feet and seeing pictures of what my feet looked like after taking a hot shower (on Google when I put my symptoms onto the computer)!! What a revelation that was. I wasn't ready to believe the name or what I saw that day...couldn't face it. Months later I managed to accept that this is what I might be experiencing and it had a name. My integrative doctor in Manhattan doesn't like medical labels and continues to ask me "WHO TOLD YOU YOU HAVE THIS?" He's brilliant but misguided at times and has a huge ego. When I first told him I had Interstitial Cystitis, he said the same thing to me. Luckily, I got much better though it took about 10 years.

I am presently taking Lyrica and lately added Lexapro which is an experiment...so we shall see. I will mention the following so anyone else reading can take heed. My EM got worse after I developed Hallux Rigidus (Big Toe Arthritis) last year which I know came about from the many times I injured my toe while wearing sandals (and socks in winter) year round for 3 years...stubbing it, dropping things on it, breaking it while running my mother's wheelchair over it, etc. etc.. SO, please take care not to injure the feet. I admit I was moving quickly at times and careless. Wish I could go back and do it differently.

I hope you get to go to Mayo clinic...I have heard mixed reviews, but it's worth it I suppose. It must be very challenging to continue each day with raising your three children. I admire your courage. As Dr. Cohen says in his article on EM: "Don't give up! Be persistent!" I am doing this and I hope you will, too, Dorothy.

Keep me posted if you wish to.

Best wishes,

Music88



Dragica said:



Dragica said:

Hi Dorothy.

Welcome to the group. There some very kind, caring and knowledgeable people in this online community. Feel free to ask questions and to share info.

I, too, started with Raynaud's after moving to a cold climate. After having phlebitis, secondary to another medical issue, and using ice packs, EM really reared its head (but I didn't know it then). ANd treatment for that e medical condition in my foot caused massive swelling and phlebitis again. And again ice packs were recommended. After that the EM really flared and it has worsened over time. However, after trial and error, I have some relief from 2 medications. Many people find taking smaller amounts of several medications works better than a larger amount of a single medicaiton. Many of these meds seem to work in synergy with one another (e.g., Lyrica and Cymbalta). AND some of us find that dividing doses over the course of a day works better that taking a larger dose once or twice a day. But everyone is different, so one just has to be brave. I recommend starting at the lowest dose possible and working your way up until you reach an unwanted side effect. A compounding pharmacy (one that custom compounds medications into smaller or larger dosages or creates combinations) is a great resource for sufferers of EM or any chronic pain.

Best of luck to you,

Cheers,

Dragica.

Hi again--the SAVE function deleted some of my posting. I wanted to add that Dr. Jay Cohen, MD is a good resource as he has EM. You can find some of his online resources at: http://medicationsense.com/articles/2012/emtreatment.php

Cheers,

Dragica

7


Thanks so much for the tips! Appreciate your thoughts.
Alina Delp said:

I am so sorry Dorthy. EM can be a tricky one. It often changes on its own for the better or worse so it's difficult to know when a med is helping or hurting most of the time until you have been on or off it for a few months. That is unless the changes are dramatic.
If you go to the tool box at top of page there is a great deal of information on EM there . It's very helpful for those new to EM and even has some new things for those more familiar.
There are many different meds that may help. It's always a trial and error thing. I would just bring a print out of the possible treatments for EM to your doctor and you and your doctor can start there .
I hope you find something that helps you soon.
Take care
8

Thanks Anne. Feels like the education and "educating" has just begun... Appreciate the support

Anne said:

Hi Dorothy, I am so sorry to read your account of your journey to diagnosis. I can only echo Alina's words in reply. As you have some time to read member profiles, you'll be amazed at how many people have had similar experience.

Hearty applause for educating your physicians! We all need to take time to do that, so other people can't find knowledgeable doctors more quickly than we did.
9

Dragica. Thank you! Will read up further on combined Lyrica and Cymbalta. Appreciate the support!



Dragica said:

Hi Dorothy.

Welcome to the group. There some very kind, caring and knowledgeable people in this online community. Feel free to ask questions and to share info.

I, too, started with Raynaud's after moving to a cold climate. After having phlebitis, secondary to another medical issue, and using ice packs, EM really reared its head (but I didn't know it then). ANd treatment for that e medical condition in my foot caused massive swelling and phlebitis again. And again ice packs were recommended. After that the EM really flared and it has worsened over time. However, after trial and error, I have some relief from 2 medications. Many people find taking smaller amounts of several medications works better than a larger amount of a single medicaiton. Many of these meds seem to work in synergy with one another (e.g., Lyrica and Cymbalta). AND some of us find that dividing doses over the course of a day works better that taking a larger dose once or twice a day. But everyone is different, so one just has to be brave. I recommend starting at the lowest dose possible and working your way up until you reach an unwanted side effect. A compounding pharmacy (one that custom compounds medications into smaller or larger dosages or creates combinations) is a great resource for sufferers of EM or any chronic pain.

Best of luck to you,

Cheers,

Dragica.

10

Music88. Thank you for the kind words and support. I think between surgery, and repetitive exercise techniques, I've not done my toes any favors. I'll try to learn more about the impact of injuring/impacting toes. I really like to be active and am learning to back off the hard way:~(. Read some of Dr. Cohen's website. Thank you (and Dragica) for sending on!

Dorothy

music88 said:

Hello Dorothy -- Your letter reminded me of my foray into this world of burning hot feet and seeing pictures of what my feet looked like after taking a hot shower (on Google when I put my symptoms onto the computer)!! What a revelation that was. I wasn't ready to believe the name or what I saw that day...couldn't face it. Months later I managed to accept that this is what I might be experiencing and it had a name. My integrative doctor in Manhattan doesn't like medical labels and continues to ask me "WHO TOLD YOU YOU HAVE THIS?" He's brilliant but misguided at times and has a huge ego. When I first told him I had Interstitial Cystitis, he said the same thing to me. Luckily, I got much better though it took about 10 years.

I am presently taking Lyrica and lately added Lexapro which is an experiment...so we shall see. I will mention the following so anyone else reading can take heed. My EM got worse after I developed Hallux Rigidus (Big Toe Arthritis) last year which I know came about from the many times I injured my toe while wearing sandals (and socks in winter) year round for 3 years...stubbing it, dropping things on it, breaking it while running my mother's wheelchair over it, etc. etc.. SO, please take care not to injure the feet. I admit I was moving quickly at times and careless. Wish I could go back and do it differently.

I hope you get to go to Mayo clinic...I have heard mixed reviews, but it's worth it I suppose. It must be very challenging to continue each day with raising your three children. I admire your courage. As Dr. Cohen says in his article on EM: "Don't give up! Be persistent!" I am doing this and I hope you will, too, Dorothy.

Keep me posted if you wish to.

Best wishes,

Music88



Dragica said:



Dragica said:

Hi Dorothy.

Welcome to the group. There some very kind, caring and knowledgeable people in this online community. Feel free to ask questions and to share info.

I, too, started with Raynaud's after moving to a cold climate. After having phlebitis, secondary to another medical issue, and using ice packs, EM really reared its head (but I didn't know it then). ANd treatment for that e medical condition in my foot caused massive swelling and phlebitis again. And again ice packs were recommended. After that the EM really flared and it has worsened over time. However, after trial and error, I have some relief from 2 medications. Many people find taking smaller amounts of several medications works better than a larger amount of a single medicaiton. Many of these meds seem to work in synergy with one another (e.g., Lyrica and Cymbalta). AND some of us find that dividing doses over the course of a day works better that taking a larger dose once or twice a day. But everyone is different, so one just has to be brave. I recommend starting at the lowest dose possible and working your way up until you reach an unwanted side effect. A compounding pharmacy (one that custom compounds medications into smaller or larger dosages or creates combinations) is a great resource for sufferers of EM or any chronic pain.

Best of luck to you,

Cheers,

Dragica.

Hi again--the SAVE function deleted some of my posting. I wanted to add that Dr. Jay Cohen, MD is a good resource as he has EM. You can find some of his online resources at: http://medicationsense.com/articles/2012/emtreatment.php

Cheers,

Dragica

11

Sorry folks that my posting was repeated so many times. There was clearly a technical hiccup . Although these drugs do make me a bit more forgetful, I don't think I am so bad yet that I'd forget posting it that many times.

Cheers,

Dragica

12



Dragica said:

Sorry folks that my posting was repeated so many times. There was clearly a technical hiccup . Although these drugs do make me a bit more forgetful, I don't think I am so bad yet that I'd forget posting it that many times.

Cheers,

Dragica

13

Hello Dorothy.

My heart goes out to you. I am so sorry that you suffering so badly. I have had EM for 13 years & because Gabapentin was not helping I have started Lyrica again!!.Only been back on it for a couple of days

It is a unfortunately a disease that we have to live with! (Not funny) I know.

God bless. Maria

14

Hi, Dorothy, did you ever get to the Mayo Clinic? Just reread your letter and wondered what the status of your EM is at present and if you can offer any more enlightenment?

Thank you,

Music88

15

Some things you may want to do.

1. Get a home blood pressure kit and check your blood pressure during a flare. Check both arms. See if the blood pressure is higher on the side that is being affected.

2. Does chilling help and elevation help. Does adding heat make the symptoms worse. The environmental aid and hurting of the feet or EM area is a sign of EM.

3. You have other conditions and EM can be related to those.

4. There are of course a ton of diseases that can be out there and have bad effects and of course finding the right mix of medications can be difficult or perhaps impossible.

I had a situation for example where my father started to have his hand swell. Of course being around an EM patient and dealing with her feet and seeing that others may even be afraid of her feet or through normal course of medicine will use gloves, one can wonder, what if a rare fungus caused it and it's catchy? When his hand started to swell I wondered what was happening. He had swelling but no burning so it didn't seem to be EM, but it was debilitating.

Then his other hand swelled up. It was a nightmare as I had two parents unable to function. Then we went to a specialist who said he had pseudo gout and gave him some pills. But that seven day dose didn't really help.

Then we went to a local ER but they only gave him some pain pills and he signed himself out. Then I found a good arthritis doctor Rheumatologist who saw him (from the same system we went to the hospital). This guy seemed sharp and when he heard of the different approaches and how my dad responded gave an accurate diagnosis for my father, BUT THIS WAS NOT EM. And he said, he doesn't have gout or pseudo gout, he has RS3PE, which required steroids. So in my father's case for something else, of course he had to go more than once and found something that eventually cured his problem.

You can also get a skin temperature IR sensor that will measure the temperature of your skin where it burns and document the temperature changes. In my mom's case her feet feel like they are burning and are red and burning with skin temperatures of 95 to 103F, often in a normal temperature range, even in cold blowing fan environments during a flare up. And the other parts of her legs ankles and feet will have a normal skin temperature response. Blowing 60 degree air over a normal persons hand or foot will give skin temps of 70 degrees after they are being chilled down and they will feel the cold. With mom her skin may be 95 on one part of her foot suffering from a flare and 70 on another even under fans. It's an interesting disease and syndrome to study, even if people don't understand it.

EM or at least some EM sufferers respond to Tramidol and baby asperin according to some articles. But everyone can be different, or there could be a couple of dozen variations of EM or complications of EM judging from what we have read here. When you start stacking diseases and having multiple diseases things can get really complicated. Also in looking through the posts hear or just reading medication side effects of some pills, one can see that side effects from medications or being removed from them, may cause EM symptoms. I'd say but this is just a guess I'm hazarding as a layman, that many of the nerve medications that are affecting nerves, could cause bad side effects. . . for example some medications if you take them for a long time, some Psychiatric drugs can cause tardive dyskinesia(TD), which is involuntary movements of the face and twitching. Imagine if you took some of these pills long term and then had a twitching of muscles in your feet? Could a person get TD in their feet and get EM symptoms from that? There is one of my pet strange and admitted very off tangent theories I've had in the past. Which nobody has validated and it's likely a crack pot theory. My point is that if nerves and messages can be affected in the brain or in other areas of the body with these exotic drugs, why can't those have strange side effects for a minority of patients that cause things like EM or some other nerve related damage?

So it's difficult to say, and most doctors don't have the time to go through all the stuff and speculation with a patient and they will quickly rule out (often accurately) things that the layman may get stuck with. And of course for many doctors who have never seen EM, they will be either baffled by it or at least hopefully curious and learn more about it.

Just some thoughts. . . but I have some flare issues to deal with so I'll cut my comments and editing short.

16

Hi there Music88,

Mayo Clinic denied me but am not sure I went through the right dept. I went through neurology and not dermatology. It actually worked out for the best though bc am having some success while working with my rheumatologist. And it's lovely that I'm not waiting too long between each visit.

So, my update is that I think it's really Raynauds that typically sets off my EM and then I get caught in a cycle of flaring. As the weather became milder, so did my flares. While it was still cold (remember that I live in Northern MI so we're just hitting 60s and 70s), I tried magnesium. It immediately made things worse. Then I tried zyrtec and had mild relief, if any at all. Next we tried zoloft at 25mg and the neuropathy went away almost completely. However, the swelling and flares remained until the weather warmed.

Unfortunately, I injured my less affected foot and then EM also kicked in on that foot, but it has been pretty mild. I did get some redness and heat after a long walk so am sad to report that I'm not exercising as much as I'd like... Mostly focused on yoga and walks for now. Would love to go on a lower zoloft dose if my symptoms remain mild. It makes me pretty drowsy but doesn't touch the side effects of many other EM meds.

How about you, Music88? How are you faring?


music88 said:

Hi, Dorothy, did you ever get to the Mayo Clinic? Just reread your letter and wondered what the status of your EM is at present and if you can offer any more enlightenment?

Thank you,

Music88