This is really fascinating carterdk. Have you had the genetic test to say if your EM is primary or secondary,please? Thank you. Ajh
Hi Alv. Do you know if your EM is primary or secondary please. All best ajh
Hi Ajh,
I’ve been diagnosed at Mayo and they didn’t mention that. Back in Spain, they told me my Raynaud’s, the other side of the coin, is primary. So I guess EM may be primary too.
@ajh I have had genetic testing for the known sodium channel mutations and was negative. I am, however, having my whole exom sequenced with Northwestern and they’re testing for a number of genetic causes. Of note, my sister has similar symptoms and also raynauds. So it is a possibility that we have an underlying genetic abnormality. With that being said, neither of us have much pain and it is more of a discomfort so it is likely a blood vessel disorder rather than a pain related disorder.
That’s great Joeshmoe, thank you. I was thinking those with primary EM may have more success with Bob’s protocol. The jury is out. I have only been tested for the Nav11 channel, and I know that at least two other channels have subsequently been implicated. I am pretty sure mine is secondary to vasculitis, small fibre vasculitis. Interestingly my mother had something Raynaud’s-like although never diagnosed. More research to come, I imagine. Take care ajh
sorry small fibre neuropathy and non-anca vasculitis which has responded to Rituximab
Primary would not respond to bobs actually. The only type that I could imagine that would actually respond (reduced symptoms not pain sensation) would be those with dysautonomia. Primary would only respond to targeting the sodium channel mutation.
Brilliant. Thank you. It’s good to have someone so clear thinking. Cheers now. Ajh
Anne Hawkins
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I have not had any testing for that. I assume I have some sort of sodium channel mutation (gain of function?) since I respond so well to a sodium channel blocker.
I have decided to post any of my updates on this thread for my both my personal organization and for those interested in the timeline of my EM. As of 5/30/2019, I stopped taking white willow and increased my feverfew dosage to 600mg standardized daily (BID) and also added 300 mg of phosphatidylserine (lowers and balances cortisol levels) daily at night.
I had a breakthrough today. It was 72 degrees and sunny today. I decided to try running and ran for 20 minutes (about 3 miles or so) and had minimal flaring if any. The last two minutes of my run I felt a slight electrical feeling in my hands and feet but it didn’t bother me. The soles of my feet remained normal color which is a big step for me as that is what gives me discomfort. I am unsure if this is related to my changes in therapy but doubt it is since it’s only been 2 days.
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Nice! Would that hold if you simply stood still for a period after exercise? I don’t have a problem as long as my muscles remain contracting, returning blood against gravity back to the heart. If I stand at a sink though too soon after exercise it feels like all the blood sinks to my feet. My feet will turn red, even if they were not when I initially took off my socks and sneakers. It creates a mild discomfort that is quickly alleviated if I sit on the floor.
It did today! I took this a minute or two after my run, I noticed my feet felt normal and didn’t think much of it initially but then decided to take a look. The pooling used to happen after every workout, while not painful, I agree that it does create an uncomfortable tight feeling. But over the past months it has slowly disappeared, it never happens after weight lifting or low stress cardio like an elliptical or stationary bike but running has always been a problem. It is good to know that I might be able to resume running as exercise even if they are only short 20 minute runs. I haven’t ran regularly since 8/2017 when I initially injured my knee.
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That’s great! I haven’t tried to run much lately. I had a similar experience to yours when I ran outside a couple weeks ago, but that was a cool night (63 degrees). Last week when I was running indoors on a treadmill at a hotel my feet got red after. The room was warm (probably 75) and I was wearing calf high black crew socks with sneakers.
I would like to run more. I’ve just been having trouble building up endurance. I feel exhausted all the time. I’m worried I could be anemic again. I had iron deficiency anemia of unknown causation in 2013 and have not had any blood work since 2015 to know where i’m at. I’m unsure whether my cardiovascular endurance is low or something isn’t working right. I don’t want to go if nothing is wrong. (On the other hand, I went through a similar “should I or shouldn’t I?” for months when I was exhausted all the time in 2013 and turned out to be anemic.)
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Honestly any running feels good even if my feet turn red after. I attribute my improvement in running to playing basketball 5 times a week since November. At first it was unbearable due to the redness, blood pooling, and pins and needles feeling but it slowly improved to where I can now play with no discomfort. As basketball involves a lot of running but also a lot of stopping and standing still, I think this really helped improve the pooling during exercise.
In response to your potential anemia, I’m sorry about that, EM is enough to deal with in the first place. It is probably worth getting it checked out though. I don’t know about you but when I put off medical issues I end up worrying and thinking about it way more than if I just got it checked out and figured out what’s going on.
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Thanks a lot for keeping us informed, Joe. And congrats on your evolution, it gives a lot of us good hopes.
Joe you have been a world of help to me and I thank you. I am still having much relief with the aspirin 600 a day and the magnesium added to the cyproheptadine. I thought you might be able to help shed light on this. My dermatologist prescribed amitripyline 30 mg at night. I was on that before adding the aspirin and magnesium. But I wonder if that’s a good idea since I read recently that it is a serotonin reuptake. I understand that mine responds well to serotonin antagonist. Which is why the aspirin and magnesium are helpful.
@herdfan that is wonderful that you are still seeing improvement. In regards to the amitriptyline, maybe just proceed with caution. I have tried a few things that made me worse and when I stopped taking them I got better again. You have found stuff that helps which helps a lot in finding further helpful medications, just stick to the similar pathway, serotonin and calcium channel blockers.
I know Dr. Cohen saw improvement with very similar medications as you, butterbur might be something you could look into as it has calcium channel blocking properties like magnesium and it also is a serotonin blocker like the cyproheptadine. I personally have not had a flare anywhere in over a month. I have seen great improvement since starting the capsaicin treatments nightly. The first week was tough but I am back to running daily, something I couldn’t even imagine doing 6 months ago. I have refrained from posting my near complete improvement for guilt of those who suffer as I did not so long ago.
I thought I would follow up since it has been awhile. As of about 2 weeks ago, all flaring has stopped. I have tested it with every known trigger except for alcohol (I just don’t drink it anymore). No flaring during exercise
(lifting weights, basketball, long runs) in the morning and late at night, in hot weather, high humidity, etc. My runs as of lately have been in 100 degree weather and I have been asymptomatic so I am sure it will hold on runs in Autumn. I have been running nearly everyday and going for long walks in the afternoons with my dogs. I did a 3 hour daytime bike ride and a 2 hour nighttime bike ride and a whole week of hiking this past week in British Columbia on vacation and my feet remained completely normal, no flaring and no blood pooling afterwards, no need to sit down, take off my shoes, the whole deal. I never thought I would be able to do these things again one year ago. I am still taking the mexiletine, propranolol, and cyproheptadine and probably will for the remainder of the year at least just be sure of everything. I am unsure whether this rapid improvement was part of my medication therapies or the capsaicin cream. It appears as though it was the capsaicin cream but I never stopped taking the medication while using the cream. I still apply the cream at night before bed and just leave it on all day, it dries overnight and there is no residue when I am out and about in socks and shoes the next day. I plan to continue to use the cream for a couple more months and will talk to my doctor about how to properly taper off of everything slowly to see if symptoms return.
I start medical school next week and am grateful to be nearly in perfect health for it (still have about 5 pounds to lose, down 18 though, from that high dose prednisone therapy I was on last fall/winter). I will still keep an eye on this forum to help those who want my advice as to how I got through it all but will be rather busy once school starts up. I am also working on trying to gain funding for EM research during my summers in school. I want to thank everyone here who helped me push through this and systematically find out what works, especially you @CarterDK. Stay hopeful, don’t give up, and keep trying stuff.
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Has anyone tried using an antihistamine? If so, did that help?
So glad to hear you’re doing better! Who was the doctor you had seen at Northwestern?