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Help With Tracey's Erythromelalgia


Hey Everyone,

As you may or may not know, Tracey (my wife) has a condition called Erythromelalgia (EM for short). This condition is very painful and debilitating and sadly Tracey is all but bed ridden at this point.

Our Wedding in June of 2006 (Before EM)

With that being said we have not accepted this as forever (despite it being very rare and no "cure" that we know of), so I am asking for everyone's help. If you know of anyone in the medical field (in any capacity, DR, Researcher etc.) please ask them about this condition and see if they know anything that may help (it is very rare and hard to find Dr's that have even heard of it). If you think you have heard of some natural cure (no matter how crazy it may sound) for conditions that even vaguely sound like EM please let us know, even if it is a "cure everything" cure, because it may be at least worth us checking out.
 
If you think of anything that may help us, please let me know, we are looking for any ideas.
Thanks in advance for your efforts and anything you may find.
 
Matt & Tracey

Comments

  1. Matt, I have EM also and have found that a low sodium diet helps to reduce water retention and reduces symptoms.

    I also take gabapentin at low doses - 200 mg/day.

    Best of luck.

    Don

    ReplyDelete
  2. Matt, Unfortunately there is no magic bullet. Have you contacted Dr. Davis in Mayo Clinic? Has she tried aspirin therapy?

    ReplyDelete
  3. Second seeing Dr. Davis at Mayo!

    I've been taking 1200mg of Gabapentin every day for a few years now, and it has worked like a charm (well, as long as I don't let my prescription lapse! My toes start getting all burny after a couple of days without it).

    ReplyDelete
  4. Has the 1200 MG of Gabapentin kept your feet from swelling and burning or just helped the pain?

    ReplyDelete
  5. Hi Matt,

    I have had EM since June and am struggling with it too. I also have a nerve compression injury in both feet that has kept me practically housebound since April. I just started gabapentin 3 wks ago and have seen some improvement, but I still get flare-ups when the weather is hot.

    Have you looked into the EM website erythromelalgia.org? You have to pay $20 to join but there are lots of medical articles in their archives. I found it extremely useful in deciding what treatments to start with.

    My husband and I also got married in 2006. I would love to get in touch with Tracey to share more of what I have learned about EM and to be part of each other's support system. (You can find my email address on the contact page of my website Flavors-of-Friuli.com.) For now, just let her know that she is not alone in her suffering.

    Elisabeth

    ReplyDelete
  6. I have EM and find that vitamin D 2000 per day, a high quality fish oil supplement, a probiotic, and a high quqlity B complex vitamin seem to help a bit. They all reduce inflammation to some degree. Still excruciating on hot humid days, but tolerable since I have been on this regimen. Also switched to sea salt versus table salt. Eat only organic foods and free range antibiotic free meats. A gallon of water a day. I truly believe in healing from within. Another thing I will be starting, based on massive positive research is the Candida cleanse diet.

    ReplyDelete
  7. Matt,

    I am in the medical profession and have EM. I find my symptoms are much better when I am on an alkalizing diet. My symptoms flare up especially with alcohol or acidic foods. In particular, taking multi-minerals before bed & drinking high pH water like Islandic.

    My feet swelling issues were relieved by taking bioidentical progesterone every night. It turned out that I had multiple hormonal deficienies. It's worth testing for. I was in my 30's when it started.

    I hope this helps. I take other supplements, but the above are the most helpful for this condition.

    Blessings,

    Mia

    ReplyDelete

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