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Erythromelalgia

All Project Matt's Erythromelalgia Posts

Articles from other sites:

1. This is probably at the top of our list of things to try, it's a very intense juicing diet, but at least according to this has cured someone of Erythromelalgia.
Article About EM Cured by the Gerson Juicing Diet

2. This is a study of something called Intravenous Immunoglobulin, our doctor wants to try it with Tracey, and we probably will once we complete our move to Massachusetts.
Secondary Erythromelalgia Successfully Treated With Intravenous Immunoglobulin 

3. Dr Jay Cohen is considered one of the experts on Erythromelalgia:
http://medicationsense.com/


Community (Online Support Groups):




Here is my new Facebook page dedicated to finding a cure for EM!

Please comment below with any ideas of things you have or want to try, that could help those with Erythromelalgia! 

Comments

  1. I was sort of diagnosed with EM, too. More than 5 years ago and still no one has a clue how to treat. My issue is almost 100% in my hands. Very rare in my feet. (my feet were on fire in Costco on afternoon - painful - lasted about 3 hours!) I was told to try aspirin and gabapentin, not together. I went to a geneticist, she confirmed the diagnosis, but was also at a loss, cuz there are no real good test for EM. If it in your gene make up, there is no way to pluck a crazy gene. I bought these gel beads in a Rite-Aid. Soak them in water for about 8 hours and they get bigger and cool to the touch. I keep them in a plastic lidded box and soak my hands. cooling, however, temporary fix. Glass of Red (1/4 cup) wine at night worked for a few weeks. I wake up with swollen, red, hot and sometimes tingling hands almost daily. Good Luck! Vickie_torchin@yahoo.com

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  2. It is a very frustrating condition, because you're right, no one has a freaking clue what to do. It's all guesses. My wife's is in both her hands & feet, but her feet are much much worse. We have heard and found that wine has a very bad effect for most people with EM, alcohol of any sort increases flaring from our experience. I sure hope someone finds a cure for this stupid disease sometime. Let us know if you hear anything. We are about to try Gerson therapy to see if that helps.

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  3. I know exactly how she feels.2yrs of burning hell hands & feet.I have marfan syndrome & osteoarthritis as well.i have tried tons different meds -nothing so far helps./im going back again to docs try and get some strong pain relief.it drives you insane hours of a day wasted trying just to get some relief.unless you actually have it or know someone with it you have no idea how much it interferes with your normal day to day living.walking,dressing ,eating =basic functions,give your wife my best wishes and lets pray someone finds a cure--fast plse xxx

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  4. Hi, Matt! I wrote to you earlier this year, don't remember what month, but i have been meaning to give you an update. It's gone! I'm not quite sure how, but it is. I think it mainly had something to do when I cleansed my liver with an herbal tinture. On top of the herbals, I've been eating mostly a raw diet and that is helping with many of my other inflammatory problems: Interstitial Cystitis, feverish, etc.

    I hope this helps and that your wife is well.

    Maria from Carlisle, PA :)

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    1. Thanks for the update! Did you use a specific diet or anything? Any other details that you can give? Thanks!

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  5. Hi Matt, My friend has this condition and I am trying to find ways to help. I am happy I saw your site.I have been interested in natural healing for past 40 years and tried to stay out of Dr, office.. I do believe in chiropractors because if the spine is sending the energy properly the body can heal. I had problems with Psoriasis that I had to figure out and cure. Drs were of no
    help. I have a suggestion I have been practicing Yoga for a long time and did some Pranayama but about a 12 years ago when I was in India I heard this Yoga guru(Ramdavebaba)say with pranayama you can cure any disease. At that time I was feeling very tired so I started seriously doing pranayama. Six month after I was amazed how well I felt. I am 70 and full of energy. There are many books and You Tube is full of it but start with this book, "Meditation as Medicine activate the power of your natural healing force" by Dharma Singh Khalsa, MD.You have to be regular about your breathing practice, off course eating healthy food , proper body PH and all that goes with it. Our bodies have a innate capacity to heal. Good luck.Smita Kolhe

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    1. Thanks for the input, I'll be sure to check it out and pass it on to my wife!

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  6. Hi Matt. Thank you for sharing your family's experience with EM. It is a heartbreaking condition. I was wondering if you or your wife has heard about the EM genetic research study at Xenon. They are offering testing of the SCN9A gene. http://www.xenon-pharma.com/em-study/

    Just wanted to pass it along in case you were interested. Kindly and best wishes.

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  7. It is a heartbreaking condition for sure! She has heard of it and actually signed up for it. Still waiting to hear anything back though! Thanks for passing it along!

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  8. Hi Matt...my 29 year old daughter was just diagnosed with this rare condition and has been to countless doctors to even just try and figure it out. I have been praying that someone find a cure for it. Her next step was to try and get into Mayo and see if they could have some answers. Keep us posted if you hear of anything! Prayers for everyone and their families that are affected with this horrible beast of an illness!

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  9. Another thing I might add Matt. A young/wise chiropractor told me about a treatment for potentially curing Reynauds that might work here. Mass. is the perfect place for it too. You'll need to look up the details on the web.

    In the dead of winter -

    1. Get some containers your wife can immerse her hands in completely, and fill them with warm water as warm as she can stand.

    2. Go outside barefoot and stand or sit with her feet in the snow and her hands in the warm water. She can dress the rest of herself as warm as necessary.

    3. After some time (I don't recall how long) you switch and the feet go into warm water and the hands into the snow.

    I was told if you repeat this procedure often enough it sometimes has a sort of resetting effect on the sympathetic nerves in the feet. You could also try it in the summer, but given your wifes condition I don't think she'd fare well with her feet in warm water.

    As a matter of fact one of the diagnostic's for secondary Erythromelalgia (most are secondary except those who inherited it) is to have the patient stand in a bath of warm water and measure how long it takes for them to turn red and feel hot to the touch.

    That's all that I have to offer.

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    1. Thanks for the reply, that is very interesting and something we will need to look into for sure.

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  10. See Dr. Mark Davis at Mayo Clinic. My take he is most knowledgeable in the USA. I' still on the hunt for an international expert. What works for some doesn't work for others.

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    1. I agree, what works for some doesn't work for others. I was diagnosed with EM 3 years ago. We have tried Aspirin - stomach problem and no help, next was Gabapentin - it was helping but side effects outweighed the benefits, after that we tried the third line of treatment - Elavil - it works but not on burning feet. So recently he has added Propranolol very small dosage and it works. No more flares and no ice to cool the feet.
      My doctor is a rheumatologist, very smart guy able to diagnose you based on your description not a test results. As we all know there is no test for EM. I am from Canada.

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  11. My friend has had Erythromelalgia for several years now. He actually wrote a book on diet for chronic pain based on his own experience. He has the list of preferred foods listed on this site: http://www.antiinflammatorydiet.info/

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  12. I was diagnosed with erythromelalgia in 2005. I've been to many top doctors along the east coast and tried many medicines. I take propranolol and diamox for completely different conditions and found that they help EM slightly in the summer. Norvasc had helped my EM slightly in the winter. That seems strange but in my case, EM is triggered when I change temperature by going from cold to warm. When I'm always consistently warm or always cold (for days at a time), EM is not triggered. I also found that for me, drastically reducing all sugar in my diet, even natural sugars like from fruit has helped. My symptoms are still severe. The worst trigger for me is light, particularly light. All bright light triggers EM in my face, ears, hands. Light from incandescent bulbs affects me the worst. Is light a trigger for anyone else?

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    1. Hmmm, haven't heard about lights causing it before but have heard of other electronics doing it so I can see it for sure.... We've also seen at least some connection involving sugar (and other foods) and I wonder if that has something to do with the glucose spike and what it does to the metabolism...

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