Questions about hand EM

Does anyone will get the following symptoms: burning under the fingernails, extremely pressure-sensitive finger tips that turn whitish or bluish when subjected to pressure-intensive activities like flossing, brushing one’s teeth, gripping items that put pressure on the tips, etc?
Thanks, Beth L.

HI Beth,

My hands aren't too bad it's my feet and legs, but the fact that they turn whitish or bluish with pressure on your finger tips suggests that your circulation isn't good. How long do they take to come back to normal colour? It should only be a few seconds.

It takes longer than a few seconds, maybe 5 to 15 minutes. But the sensitivity, discomfort upon pressure remains. The fingernails are also slightly discolored, bluish. The computer I use these days is an iPad, but even touching the screen has become problematic. My iPad is my window to the world. Even that seems to be closing for me. This increased hypersensitivity, tingling and numbness in my fingers is worsening. My hands and upper right arm often get reddish if I get hot. I keep lowering the thermostat in the house. 65° and the ceiling fan going off and on keeps the heat at bay. I never tolerated these temperatures before my EM started this past summer. My neurologist thinks the EM may be spreading to my hands and arms. He doesn’t think it is neuropathy, my symptoms are too unusual and severe. We are going to do an EMG on my arms to see what we can learn. I have been mexiletine 450 mg daily and I am down to 1200 mg daily for Gabapentin. I looked up mexiletine side effects and saw heartburn, tingling and numbness listed, so I am phasing out mexiletine on the chance that it is the cause of some of my heartburn, & tingling and sensitive fingers. Then I will try increasing the gabapentin again and see what happens with my fingers & EM in my feet. Thanks Sheltie, for everything you do in the midst of your own pain, and for being so kind as to reply. I really appreciate it. Beth L.

Beth, I did have tingling in my hands on a few occasions the first couple weeks I took mexiletine. I assumed it was from the pill because each time it happened about an hour after I took a dose. It didn't persist and I had largely forgotten about it until you mentioned it. I also get heartburn if I don't take mexiletine with food.

Beth, my hands and feet are quite bluish especially in the mornings. I've noticed my fingers get bluish at night when flossing, etc. just like you've observed.

I wear gloves a lot to help keep my hands warm. I have a pair that has half fingers, with a flip cover to make them into mittens. I find it convenient for using an iPad, as I only need to have one finger exposed. If I don't wear them my fingers turn icy cold. My feet are so constricted in the morning that it hurts to walk on the balls of my feet. Later in the afternoon the EM kicks in and I don't need the gloves.

graciousgeekgirl,

Do you have Raynauds?

Also, you need gloves with conductive fingertips that you can use with touch screen devices! There are many different kinds on the market. I have a pair and they work great.

Yes I have Raynaud's (cyanosis) in the mornings. Switches over to EM in the afternoon. May have something to do with the changing between the sympathetic nervous system and parasympathetic nervous system. This article by Dr. Jay Cohen describes things perfectly for me:

http://medicationsense.com/articles/2013/biorhythms.php

Having both makes it very hard to treat. Drugs for Raynaud's that cause vasodilation aggravate the EM, like Norvasc did for me.

I'm aware there are gloves with conductive fingertips. There is also conductive thread that can be sewn into the fingertips of your favorite gloves if you can manage a needle and thread (like sewing on a button, without the button).

graciousgeekgirl

That is a great article. I hadn't seen it before. I just have EM and mine is 24 hours a day now. My dermatologist said it couldn't be EM as that is only flares not all the time. It didn't start off that way 10 years ago or thereabouts, but has gradually gone worse over the years. So, I may well print that out and go and see him again and show him.

sheltielife, I have found that as time goes on my EM starts earlier and lasts longer. It has also evolved considerably. Started out as burning feet in the afternoon, red hot feet at night and not being able to stand bedcovers touching. Now it's red prickly feet in afternoon/evening, but I am able to sleep with socks and the covers on. Perhaps getting B12 treatment for my pernicious anemia helped. However it has migrated to my hands, up my legs to my thighs. Within the past couple of months I've felt it burning inside my chest and eyes.

Dr. Cohen has EM and after a number of years figured out how to treat himself so he was able to return to his medical practice.

His web site has some very good information. It's a little tricky to navigate but if you go to the main page (click the large MedicationSense.com banner text) you can work your way through to the other pages.

Other pages that may be helpful are his pages on EM treatment:

http://medicationsense.com/articles/2012/emtreatment.php

http://medicationsense.com/articles/2012/emsup.php

He is a strong proponent of tailoring drug dosages and usually starts a patient at 1/8 to 1/4 the usual dosage. I find this very interesting as I have discovered with my EM and other autoimmune illnesses that I am highly sensitive to drugs. I bought a pill cutter so I can reduce my doses of the medications that I do take, which has helped alleviate the side effects.

http://medicationsense.com/pages/sideeffects.php

Tracy

Thanks for those links I will look them up later. Interesting that you are highly sensitive to drugs. I am just the same.

gracious,

I understand the difference between the sympathetic and parasympathetic nervous system, but how did your doctors determine for certain that you have Raynaud's and EM and not just Raynaud's? My experience with Raynaud's is limited, but years ago I did date someone who had it. After being ice cold, their hands would become very red and warm.

It's illustrated by this graphic:


With little direct testing for EM, how did they determine that both Raynaud's and EM exist in your hands simultaneously?

Hi CarterDK,

It's not simultaneous. I have Raynaud's in the morning. This is when then sympathetic nervous system is in control ("fight or flight"), according to Dr. Cohen. My EM kicks in during the afternoon hours, when he says the parasympathetic nervous system starts taking over ("rest and digest").

Raynaud's was diagnosed by my GP in winter 2009-2010. I lived in Wisconsin then, noticed my fingertips turned white in bitterly cold winter evenings, particularly my right hand. I wore really good down mittens but at -20F its tough to stay warm. Fingers became red and very painful when they warmed up. I moved to a milder climate (San Francisco Bay Area) a year later and did not observe Raynaud's until my EM symptoms started in 2013.

EM in my feet was diagnosed at the Rochester MN Mayo Clinic in April of this year (2015). My EM symptoms began late fall of 2013, started with burning feet at night. I had surgery on my right foot for a neuroma (swollen nerve) in July 2014, that foot would turn very red in the evening. Had a battery of tests at Mayo for small fiber neuropathy, including QSART and sweat tests. These tests indicated I had SFN, and my neurologist, Dr. Sarah Bernini (a terrific neurologist BTW), diagnosed EM. The podiatrist at Mayo did not think it was CRPS because it wasn't constant and both my feet were affected, not just the surgery foot.

It's only been within the last few weeks that I've noticed signs of EM in my hands. Palms get prickly and reddish starting in the afternoons, feel very warm, joints at base of fingers get very sore (just like the balls of my feet did in 2013).

It seems my right side is more strongly affected by these neurological problems than my left (I'm left handed). Curious.

Or it could be just a rebound effect from Raynaud's in my hands. Hard to know for sure. My neurologist at my HMO doesn't know much about EM, wasn't able to diagnose it. Required a trip to Mayo Clinic.

Yeah, I only meant simultaneous in a general sense, not that they happen at the same time. I was wondering about the rebound effect. Perhaps the Raynaud's lessens when the parasympathetic nervous system predominates and the blood returning is what causes the redness and warmth in your hands. It's the same principle as when someone gets frostnip or frostbite. If it was EM, I would think wearing gloves would be intolerable any time of day.

Carter, thanks for the suggestion regarding gloves with conductive fingertips. It seems I do have Raynauds in my hands. I saw my dermatologist this morning. Based on my symptoms and photos, she feels that’s what I have. It is just crazy. As with my feet, one hand can be freezing, the other almost normal. So far only my feet burn like mad --usually early in the morning. Today it was almost unbearable. In just the last couple of days, my cold fingertips bother me more and more. It kicks in in the early evening, which suggests a parasympathetic nervous system in overdrive “rest and digest.” My face can start burning while my hands are freezing. I don’t know if I am coming or going. I am constantly adjusting the thermostat & fan. Evening is when the fingertips get so very sensitive and turn blue when I put pressure on them doing anything. Tonight I found a pair of soft knit gloves and put them on. My hands felt so much better. The blue color went away and my fingertips were not so tender. I am going to buy some conductive gloves asap. Hopefully I’ll be able to continue using my iPad.
Tracy I seem to be following your pattern. Having both of these disorders simultaneously is horrible, just horrible. I am now off my antidepressant and gabapentin. I have a call in to my neurologist to get me started on Cymbalta ASAP. My dermatologist says I have a good case to persuade my insurance company to cover Lyrica. Gabapentin didn’t seem to help me much.
Beth



CarterDK said:

graciousgeekgirl,

Do you have Raynauds?

Also, you need gloves with conductive fingertips that you can use with touch screen devices! There are many different kinds on the market. I have a pair and they work great.

Beth, I sincerely hope Cymbalta works for you. I tried it for a couple days but side effects were too intense. I next tried Gabapentin for a while but it didn't help much and the side effects eventually really bothered me. I also used Nortriptyline for a while (had tolerated it just fine in 2012 when I had disc problems) but developed tachycardia that I finally pinpointed to the drug. And that was at the smallest possible dose.

My doctor next prescribed Norvasc for my Raynaud's but it caused a very bad EM flare in the middle of the night. I think it made my EM spread to my hands.

I have a bottle of Lyrica to try but after all my bad luck with the other meds I'm afraid to try it right now. For now I'm taking low dose aspirin and 1/4 dose Levsin (IBS med, helps my morning gut pains).

Too bad these meds don't consistently work for everyone. Did you see the Midrodrine cream thread, one person seems to be getting positive results. I wonder if that works for someone who also has Raynaud's as midrodrine is a vasodilator. Perhaps apply only late afternoon and evening?

http://www.livingwitherythromelalgia.org/forum/topics/midodrine?com...

Article about midrodrine cream:

http://www.erythromelalgia.org/Portals/0/Topically%20Applied%20Midodrine........pdf

My doctor was really down on Midodrine cream as a therapeutic option. I pitched the idea to him last week. He didn't think it would work. He said the sample size was too small on the study and that they don't prescribe vasoconstrictors for pain conditions, that they typically make the pain worse.

He's been good to me, has helped a lot, so I didn't argue with him. I pushed back slightly, but decided to let it go. He is experienced with EM, has treated it a number of times, so he isn't willing to write prescriptions on demand like some doctors. He is very focused on sodium channel defects as the underlying cause for EM. That's why he has me on a sodium channel blocker. Since its worked for me, i'm willing to defer to him.

I'm still interested in how Midodrine works for others.

Glad to help on the gloves, Beth!