New to this forum and learning

Welcome New Member Introductions
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Here are some questions in no particular order:

I have not been officially diagnosed with EM, but it sure seems to fit my symptoms! What, if anything, can be misdiagnosed (so far just by me) as EM? 68 years old, generally fit and I just got my own bloodwork from Healthcheck USA. No diabetes, no pre-diabetes even, normal uric acid, everything excellent except for low T and elevated PSA typical of a male my age. I don't have muscle or joint discomfort except somewhat as the aftermath of extreme exercise -- cycling up 20% grade hills etc, and I recover from that quickly. I did see a P.A. at my dermatologists office and she pointed out a couple blue toes at that time consistent with Raynaud's, which is consistent with EM. There is no EM in my family that I am aware of. I am going back to see not the PA, but the actual dermatologist who says she is familiar with EM.

At my visit to the dermatologist's office it was suggested I might want to get a foot biopsy. I am not necessarily against this, but do not know what it would be looking for and what it could reveal that would cause me to do something importantly different. I would like to be better informed about this before I go back in. (I am not sure they will even push it at that time.)

Blood work? I got a very comprehensive "Men's Panel" http://www.healthcheckusa.com/mens-health/blood-tests/mens-basic-profile.aspx recently, but wonder what additional bloodwork might be relevant to confirming a diagnosis of EM or finding out what other condition is primary to it.

Magnesium and Alpha Lipoic Acid have either helped immensely or the condition went into relative remission by coincidence -- this despite Texas hot weather is starting to kick in. I suffer no perceptible side effects from either one. I don't think i was getting results from aspirin or ibuprofen. Others' experience with magnesium?

I take gabapentin (moderate dose) at night which is supposed to control periodic leg movement disorder and aid sleep. My feet never burn at night nor in the morning. I wonder if the onset, (minimal lately) in the mid to late afternoon of EM could actually be withdrawal caused by Gabapentin dependence? I am considering tapering the gabapentin back as an experiment. I only take it before bed. Perhaps I should also take it in the day, perhaps not at all?

Exercise is supposed to be a trigger? But I never have a much of a problem on long bike rides. In fact, I can have a little itching and burning and go on a bike ride and EM goes away.


Best kind of doctor? Sad to say, my general practitioner is burnt out and has got to the point of prescribing things just to appease his patients and I don't know how to find the kind of GP I would be comfortable with. I do have an excellent relationship with my dermatologist and think she may be my best bet, other than researching and taking charge myself. I will be involved and proactive in any case -- I have always had better luck with medical issues being involved than blindly doing things suggested to me whether or not they make any sense.

My EM, (if indeed that is what it is) is far from debilitating at this time and I almost feel guilty being on this board with my questions when other suffer so much more. My heart goes out to those who are forced to take massive doses of painkillers etc. just to make it through the day.

Well, you know a little bit about me and feel free to ask for more. Thanks in advance!

Don

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Hi Don, firstly welcome to the group, it’s a great place for support, info and friendship. Never feel guilty for having less pain and discomfort that some others, I’m sure other people would agree that it’s great that you can lead a relatively normal life. I have been at both ends of the scale pain wise from very severe burning, numbness and tingling where the only way I could cope was 3000mg gabapentin and citralopram daily) to now being med free and able to cope with the odd flare here and there. My em specialist reccomended high dose magnesium and said that lots of patients find good results with it so it’s come as no surprise that you have seen results. I also had been very fit and used to do intense spin classes at the gym each week as well as running and strength training. I have always been able to push through the pain and numbness caused by exercise (probably because I’m such a stubborn cow lol) but sadly I let the news of probable MS (now confirmed) stop me, I just gave up thinking what’s the point. 6 months later and feeling more accepting of my EM & MS and I’m getting back in the saddle, only 7-10 miles at minute but it’s a start. I’ve also signed up for a sponsored 5k Race For Life so been training for that. I now run 2.5 miles 4 times a week and will be building it up to 3 miles next week. All this doesn’t seem a lot to normal people or those who knew me pre dx but hey I’m not that person anymore…

I also had skin biopsy, this showed up small fibre neuropathy so could be that’s what your drs will be looking for? I think most of the testing they do is to rule out other things rather than to test for EM because there’s no definitive test for secondary (which is what I’ve got, I had genetic testing) my MS specialist thinks the em symptoms could be secondary to the MS but that’s just his opinion, he also think I had ms 7 yrs ago when they ruled it out due to lack of medical evidence. That was when I got my EM dx.

Good luck in your journey to dx and I really hope that your symptoms stay minimal. Laura

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Hi Don. Great to see someone from TX here! I live in Willis just north of Houston. I too have only mild pain with the EM (not diagnosed yet) but I do get serious pain elsewhere. Maybe it’s related to SFN. Does anyone know how one gets SFN?

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Oh, I also have RLS at times.

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Well, here is my update. Either:

1: I have a found a way to keep this under control pretty effectively,

2: The symptoms coincidentally went into near remission with my program -- only slight sensation of heat at times and little/no redness or swelling on the ends of the toes.

I am taking 2-300 mg of magnesium supplement capsules 2-3 times daily. This has not reached a threshold where I am sitting on the pot all the time -- no discernable downsides to the supplement. I am also taking 2-4 capsules of alpha-lipoic acid daily. Aspirin and ibuprofen did not seem effective. I am wearing open-toe sandals as opposed to the steel-toed work shoes I have been accustomed to for the last 30 years. This has been a little bit of an issue because I have a decades-old habit of kicking things around at work (own an automotive repair shop) with impunity! Also the soles are NOT resistant to slip on the occasional oil spot on the shop floor. I may look into getting some kind of well-ventilated sandals yet with a custom toe protector and garage floor, oil resistant, non-slip sole. HOWEVER: two weeks ago when I put steel-toed work boots to do yard work in an overgrown area where sandals were out of the question, it triggered a flare-up, whereas I have been pushing a mower in the work shoes since Thursday without a problem. We are in Texas where it getting hotter and the test of 103* weather is yet to come.

Thursday I see my dermatologist whom I respect highly who said she is familiar with EM and we will decide on further testing. I am not sure about a foot biopsy if it is unlikely to reveal a critical purpose in doing anything differently. Any additional blood work she wants done, why not?

Guardedly optimistic!

Don in Austin

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Tizzy said:

Sounds good !!! - Long may your improvements last, and hopefully nothing lands on your toes at work.
So Don thanks Tizzy for her response and replies:
Oh, I have already bounced a tire/wheel from a Honda Civic off the toes of my left foot! There were two distinct elements of pain to that incident. The physical pain was quite excruciating for a while but fortunately there seems to have been no permanent damage. The pain of humiliation for having been really stupid in allowing the accident to happen was probably worse!
Don in Austin
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What is SFN that you refer to here?

Tizzy said:

I agree with Lauraflora that biopsy would be to look at small fibre neuropathy as EM can be secondary to this . SFN is also associated with restless legs .Gabapentin is a drug used to treat pain of EM ,so if you are on it already I would be inclined to have the biopsy and see if you have
SFN . IF you do then I would think you could say this has been the reason for your reasonable pain control and not mess with the dose ( especially if it also helps with restless legs)
I just had a huge range of blood tests back and apparently couldn't be healthier - well I suppose at least meds are not doing any harm!! Of course diagnosis is largely by exclusion and I am well apart from SFN. Hope your symptoms stay minimal Tizzy
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Hi, Don, and welcome. I've been taking magnesium regularly after seeing a recommendation on the Peripheral Neuropathy board I frequent, and it's helped tremendously, especially with cramps. BTW, the moderator on that board recommended a form of Mg other than magnesium oxide (which, she said, isn't absorbed very well). I also identify with your uneasiness about being on THIS board because your symptoms aren't unrelenting. But as Lauraflora said, this board is for anybody who's concerned about EM.

As for tests, I'll report that just today, my rheumatologist called to say that the only abnormalities in my blood work are low immunoglobulin alpha and gamma and slightly elevated rheumatoid factors--nothing that's definitive for EM. But when I asked if she still thinks I have EM, she said yes, based on symptoms and especially on the photos that I brought her.

Here in Pennsylvania, it's been an uneasonably chilly spring. Everybody else is griping, and I'm loving it. So here's wishing you a cool spring and summer in Texas.

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Dear Don.

You are certainly most welcome on this site. Your contributions are invaluable to all of us. Thank you. We all have such a lot to learn from each other.

Wishing you a 'comfortable' night

God bless

mads x

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Don, I am so happy to hear you have found a plan that has minimized your symptoms. Please never feel guilty for not suffering as much as others. WE are nothing but happy for you and hearing about your success only brings us encouragement that we too can get there some day.

There isn't a biopsy or blood test to my knowledge that diagnosis EM. It is usually diagnosed by your symptoms mixed with excluding other possible causes for them. There are some specialty tests that some hospitals have but not available just anywhere that give the doctors a better Idea as to if it is EM. I don't know the name of it but there is one where they take the temp and blood pressure in your hands and feet depending on where you have problems. They first take a base line when you aren't flaring then ask you to induce a flare with walking or what ever it is that triggers it for you. After you flare you return where they repeat the test looking for a certain amount of skin temp increase and changes in your blood pressure specific to your hands and feet. They put tiny blood pressure cuffs on your fingers and toes.

Some other tests to have as to why you ay have it would be autoimmune, neurologic, genetic, B12 deficiency, Blood disorders as well as some medications could cause it. I am sure I missed some in there First and foremost you have found what your body needs to ease the symptoms ! That can be a big challenge for some. Just enjoy it and don't feel bad about it. I am so happy for you. Take care,

Alina