My. Mom has had skin biopsies done over at least the last 15 years for skin cancer checks (had melanoma a few times) and always healed well… Now since the EM started she can’t heal from anything! She got a skin biopsy and now look at it it’s big, deep… Developed biofilm/slough on it in 2-3 days after the biopsy - this happens every time without fail ever since the EM started. Shes tried santyl, aquacel ag+, antibiotics for gram + and - strains, and sharp debridement - the stuff just grows back… She just can’t get enough natural healing circulation as I guess with the EM her skin Is always inflammed and red even when not having a “flare”… Any advice? She is going for a second opinion at a wound care clinic… But it’s just amazing the change since her EM…normally she just healed without an issue…
Hi, how awful for your mum! Yes, although I did not have undergone biopsy’s, I’ve noticed delayed wound healing on my feet since I have EM. It sounds ridiculous, but I was bitten in my feet by a rooster last summer. Ofcourse not a big wound, but it took like 6 weeks until the wound was healed (that should have been 6 days…) . And the scar is still very visible while it happened 7 months ago. I have a lot of purple scars wherever I bumped my feet the last year. The scar-tissue does not color normal anymore since I have EM.
I must say since I’m on Bob’s protocol (soaking my feet in warm water everyday for 20minutes and keep away from fan and other cooling methods) my other skinproblems (eczema) has dissapeared. That took only 5 days… It’s very early in the treatment to make conclusions, but I guess that the absence of the constant cooling is a relieve for my skin. And… my flares have decreased in daytime since I started with soaking. That all together must be soothing for skin and healingprocesses. I wish your mum the best
I think that many of us with ore severe EM experience skin breakdown and retarded healing. That is because our blood is less well oxygenated hence the blue coloring at times. I had serious wounds that would not heal at all. The very best for wound healing is low light laser (LLL) (using Dr. Kahn’s protocol, as discussed in Norman Doidge’s book, using red, then infrared and finally infrared laser, if indicated). My sores started to heal within one week and the ulcerated areas filled in within a month. LLL is used widely in Europe, Russia and eastern Europe routinely post surgery and for other wound care. And its use is rapidly spreading throughout North America. It has been so profoundly helpful that I purchased a home unit and after 1-1/2 years my EM is much better and I rarely flare during the day now and no longer have to use a fan except at night.
If you are interested to see if there is anyone in your area that has been trained at the Meditech Institute, you can email them at http://bioflexlaser.com/contact-us/index.php .
Dragica - I too have noticed infrared to help heal various wounds that would take forever to heal. I’m curious though - are you saying it has helped BOTH with wounds and EM? How soon after using LLL did you notice an improvement in your EM? Did your EM get worse before better? Thank you.
Haven’t read this very carefully yet but maybe something like this is relevant to ppl in this thread
(note the author is affiliated with the brand of laser or whatever)
I literally just read that before I saw your response! So interesting! I sent it to my mom… I saw another response about this in another group and the woman said to make sure it’s class 4 laser and not class 3. I also wonder if light therapy blue/red can help. I’ll have to call around and see if that class 4 laser is offered in our area. Thanks!
I just read that! So interesting!
Thank you so much that sounds so promising! I emailed my mom
When I first came to Dr. Kahn’s clinic, I was walking with great difficulty with 2 canes and was off balance most of the time. The pain was excrutiating.
The Low light laser has helped both my skin and my EM. Of course, healed skin is less likely to flare, so there was fairly rapid improvement in the EM. Within 2 months I was flaring much less and the duration of the flares was also less. The pain was also less severe.
When I approach Dr. Kahn’s clinic, he readily admitted that he had not treated someone with EM before, but he thought he could help my skin. Being a researcher, I decided I had nothing to lose as I had reached the point where the pain, swelling and level of skin breakdown was intolerable.
At the start, because my feet were so bad, we were not able to place the laser pads on my feet as it caused more flaring. However, Dr. Kahn said we would treat my skin indirectly through the lower lumbar spine. And we’d try to affect the disease itself by treating the cervical spine area (the laser was placed in a way to impact on the hypothalamus where our central temperature control resides). This dual approach turned out to be a very effective approach for me. Dr. Kahn’s laser treatment is unique–his was the first 3-stage treatment–first using red light, to penetrate upper areas of skin, then infrared light to penetrate more deeply and widely. And finally, infrared laser was used to penetrate more deeply (but in a narrow areas).
Eventually, we were able to use infrared laser (laser points) on the spots of most damage on the soles of my feet and on my toes (if I used lightly refrigerated cooling packs on them beforehand).
After 3 months I noticed that the proprioception in my feet and lower legs (sensors that provide information about joint angle, muscle length, and muscle tension, which is integrated to give information about the position of the limb in space) was now working properly again. I wasn’t walking like a drunken sailor. I could walk in a straight line. And I could walk short distances without canes for the first time. Gradually, my toenails returned and the color of my feet improved. I was sleeping through the night most nights.
After about a year, I decided to buy the equipment myself because I realized that the laser was essential to continued improvement. As well, I was experiencing swelling and pain from osteoarthritis and found the laser very helpful in reducing this pain, too.
So, where am I now? After about 3 years, my disease is under much better control. My skin is healed and the swelling in my feet is basically gone. I have been able to reduce the amount of Lyrica I take and hope to be able to continue to lower the dosage. I walk without canes and can wear sandals and recently have been able to eliminate fans and cooling soaks during the day. I only use these at bedtime. I still have problems when the temperature goes above 20C (68F). I am gradually trying to increase my tolerance for heat. I am hopeful that I may continue to see improvement. This a slow steady process. It requires patience and a lot of hopefulness. I have found that self-hypnosis and other mindfulness practices help keep me calm and focused on recovery.
I hope this helps.
Thank you so much Dragica for your response!!
I am so glad you have found improvement with Dr. Kahn and the laser treatment. Amazing.
Are you based in Toronto then (where he + his clinic is, I gather)? I would definitely be interested in something like this but am nowhere near Dr. Kahn. I did find an acupuncturist with the bioflex laser near me, but fear someone without much knowledge (about lasers AND EM) would make me worse.
How often were your treatments initially? And, did any of the red light / infrared light heat up your skin “too much”?
Again, I really appreciate your detailed reply. I am glad you are not in as much pain anymore. Lyrica is the best drug for me, but it makes me very depressed and am trying to explore other “out-of-the-box” options.
While i’m glad to hear of your improvement, Dragica, I don’t think there is any science to support the following statement:
There is no indication from medical research that the blood of EM patients is less oxygenated. Tissue may become hypoxic due to episodic blocking of blood vessels, followed by reactive hyperemia and erythema. It is this episodic blocking that is the underlying pathophysiology of erythromelalgia.
I think I was trying to explain it too simply to non-medical people. Thanks for the correction.
I do live in Toronto, so, I am very fortunate.
Dr. Kahn requires that purchasers of his equipment be qualified professionals or health organizations. Many acupuncturists in North America actually have medical training in their home countries, so I would not rule this person out automatically. But caution is always good no matter who the health professional is. Sometimes acupuncturists are amazingly well-versed in healing and some physicians are not very good. The same goes for physios, chiropractors and nurses. It’s always good to find out about their experience and effectiveness. When I visited Dr. Kahn’s rehabilitation centre the first time I had to wait in the waiting room. I used that opportunity to talk with everyone there about their experiences with laser. They were all positive—and the waiting room was packed with people. You could do the same.
Dr. Kahn has a training institute which gives people an excellent training in the use of the laser equipment with follow-up consultation. Stage 1 protocols are often used to start (there are 2 more stages that only professionals should be using) and that is something that almost anyone can use without extensive training. Stage 1 is designed not to cause any injury --the protocols are built into the machinery. So, if you feel comfortable in making inquiries, you might want to contact the acupuncturist and ask about their health care and bioflex training, what protocols they will be using with you. We eventually moved from Stage 1 up to a Stage 3-type customized protocol.
The laser treatment did not cause my skin to heat. It is low light (cold) laser and generates almost no heat. It does stimulate circulation. So, that is why they could not use it directly on my feet for a while, although I can now. One can always try it and if it causes a flare then don’t do it for a while and move to an indirect approach. I can’t see why it would make your EM worse.
Re medication—I take a combo of Lyrica (100mg/day spread over 5 doses) and a very, very small amount of Cymbalta (only 15mg/once a day) which counteracts the swelling that Lyrica causes for me and it also helps with blue moods. They seem to work very well together, better than either separately. Unfortunately, both contribute to some cognitive symptoms for me (short-term memory problems), but that varies from person to person. Most people with EM and chronic pain I have met are on higher doses of medication than may be required. Remember many of these drugs were tested on middle weight, younger men, not on women (especially older, more sedentary women). Perhaps if Lyrica helps you but causes depression, you might want to speak to your doctor about a lower dose. Dr. Cohen, who was a medical consultant to the Erythromelalgia Association for many years before his death, always suggested that doctors start on very low doses to start (even if that meant cutting tablets into halves or 1/4s or opening capsules with beads and dividing them up and then very gradually increasing the dose over several weeks until an unwanted side effect appeared and then go back to the previous level. It worked like a charm for me as I am a small-boned thin woman. And I have never needed to raise the dose which is also wonderful.
I hope this helps.
Dragica - Again, thanks for the time in your detailed reply. Yes, that is very helpful. I’ll try to talk to the acupuncturist near me, and vet him as much as I can + then re-evaluate.
That is also very helpful re: lyrica and small doses. Yes, I have always wondered why everyone across the board (regardless of weight, gender, metabolism, etc) is usually given the same starting dose of some meds. I am in general very sensitive to meds + their side effects, to the point that I wonder some of my doctors think I’m being stubborn haha. I’ll see if I can spread out my lyrica more over the course of the day.
Thanks again very much.
Do you mind telling me what dose of Lyrica you are taking? I found that if I take varying amounts based on when I need it most, it really helps.
I was taking 25mg in upon awakening, 18.75mg at lunch, 18.75 at 4pm and a further 18.75 at 7:30pm and finally 25mg at bedtime. The heavier dose at night helps me get through the night and the 25 first upon awakening helped get the blood levels back up after 8 hours (I now ma doing fine with only 18.75 in the am). I plan to try to reduce the bedtime dose next to see how that works.
Dr. Cohen said that many of us find that taking smaller doses every 2-4 hours helps us avoid some of the nasty side effects which come with higher doses taken further apart. Also, he said in his experience treating many EM folks that many of us are very sensitive to meds and are fast metabolizers. So, we need less more often. He was so great to work with because he also suffered from EM and knew what he was talking about firsthand. His EM was under control using tiny amounts of several different classes of meds spaced throughout the day.
I am pleased to hear that you will try to vet the acupuncturist and perhaps try a few treatments. Many of the laser technicians at Dr. Kahn’s clinic come from Ukraine, Russia and Eastern Europe where they were doctors who were trained to administer low light laser. Because getting a license in North America is virtually impossible for them, many also do acupuncture and other treatment that is used widely in the old USSR. If you are worried, I’d ask that the treatments only include the lumbar spine region to start. That works indirectly on the whole lower body circulation but in a very gentle way. It’s kind of like trying to re-set that part of the body to the default setting. My circulation really did improve very quickly using that approach. And it never caused more flaring for me, but my the color of my feet continued to improve. Dr. Kahn said he was so alarmed when he first saw me because he had never seen feet that color except when he had to do a foot amputation during the war (he was trained as a cardiac surgeon and was in charge of a major field hospital).
Best wishes—let me know how it goes, OK?
Hi Dragica -
I take 25 mg lyrica at noon and 25 mg at dinner. My worst time is evening. I am going to talk to my doc about dosing and time. I thought the lowest pill of lyrica is 25 mg? Mine are capsules, so they would be hard to split.
Taking less medicine more frequently sounds very interesting and worth a try. Fortunately I have a doc appt coming up pretty soon, I’ll suggest it to him.
I sort of go in cycles where I am on lyrica but very depressed, so I taper down and off, feel more pain, then restart it again, etc. Ha. One of my docs said “But you’re on such a baby dose!” … but I think I’m just very prone to depression. (I’ve been on high doses of antidepressants for ~15 years, but unfortunately they don’t do a thing for the EM.)
In terms of laser/light, idea of the spine only at first is an interesting one. If I do it, I’d like to ease into it as much as possible (suddenly increasing circulation sounds a little scary). And if I do it, I’ll def. let you know!
Thanks for your help + support.
If you are taking 50mg total/day, then you could try this:
· buy gelatin capsules as close to size of your Lyrcia capsules as possible. Often pharmacists will sell some of the proper size.
· then open the 25 mg capsules one at a time; then open two gelatin capsules.
· Put half the powder from each Lyrica into each gelatin capsule and re-seal (It’s not that hard—just tap out the powder from the biggest half of the gelatin capsule containing the Lyrica into the largest half of the gelatin capsule. When the powder level looks approx. the same in each, then reseal both with the other half of the capsules.
· It will take a little practice, but as long as you are taking the full amount in every 24 hour period then the total dose is the same. That means that even if you are a little off it shouldn’t matter to your daily dose. I did this type of dividing for nearly 2 years as we gradually reached the best dose for me for both Lyrica and Cymbalta. With Cymbalta (which is a capsule with beads), I counted beads starting with 15 beads out of approx. 250 and gradually increased every few days or until I reached an unpleasant side effect.
· It’s amazing what we can learn to do, if we are willing to be proactive with our disease management. As my mom used to say—“Nothing ventured; nothing gained.”
Re laser treatment—the effects slowly build. It doesn’t cause massive changes at first. If it causes any unpleasant increase in circulation, then stop it for a while. The effects to start are not long lasting. Expect that you may need treatment 2-3 times a week for the first month and then it tapers down after that. Good luck.
Just wanted you to know that I am the subject of this case study. I do not have any other connection to Dr. Kahn or Multiflex laser, other than patient and doctor. (I learned about Dr. Kahn and his research and clinical practice from the book The Brain’s Way of Healing by Norman Doidge).
Multiflex laser is a 3-part laser system. Dr. Kahn developed this protocol because his experience showed that clinical results were better in many cases when affected areas were “primed” first with red light, then infrared and finally infrared laser points (as required in specific area, like ulcers). For continuing relief, I have a home unit and now only use red and infrared light to treat my EM and osteoarthritis approx. 2x/week. LLL did heal my skin and improve circulation relatively quickly. And that, in turn, allowed me to increase my activity level which helped to improve my circulation and well-being overall. Gradually my EM continues to improve as the intensity, duration and frequency of flares has lessened. I still do not have a “normal” life, but I can now shop for an hour or so, attend concerts, eat out but I am still unable to travel unless I know the surroundings will not be too warm. I am now gradually increasing the temperature of my surroundings to increase my overall heat tolerance-- so far A/C from about 19C to 23. I no longer use any cooling methods during the day–only fans at night and tepid foot bath before bed. I plan to start removing the fans at night, one foot at a time (as my right foot is the worst because of a benign tumour under my arch). I continue with small doses of Cymbalta and Lyrica, but have been able to decrease my dose of Lyrica and will continue to do so very gradually. There is hope, but I believe that for many of us with EM it requires perseverence, being open to various types of therapy and willingness to combine medication, exercise, mindfulness, and possibly use of light-based treatment for those with skin breakdown and/or inflammatory disease,
Best wishes to all of you.
Hi…I have diabetes type2 and my heals (which I have EM in them) have 3 severe cracks on the rt foot and 1 on the lft. I’ve been lotioning and putting aquaform on them but still not healing. I’m not sure what else to try.