Erythromelalgia Clinic-health

Erythromelalgia Specialty Clinic

I will share my visit note with you all below, which highlights his recommendations for treatment.Yesterday I met again with Dr Mark Davis and went over results and treatment plan. All my tests were normal: EMG/nerve/muscle studies, thermoregulatory sweat test, blood work. My genetic test from University of MN is still pending. Otherwise there is no explanation for why I developed erythromelalgia. I am convinced it was from steroid injections due to the abrupt onset and timing. Dr Davis feels otherwise. My other concern was that my EM symptoms could be a delayed hypersensitivity reaction to the metal components of my artificial cervical disc, which I had surgery for on 11-1-16. My EM symptoms started 4-17. Dr Davis also feels that is not related. I am still scheduled for patch testing in March, as ordered by my neurosurgeon.

I did have a few additional questions for Dr Davis:

  • Mayo's plan(s) for future research on EM
  • His opinion on lidocaine infusions amy35
  • His opinion of Bob's Protocol paula35I actually printed out a copy of Bob's Protocol and gave it to Dr Davis (thank you - I copied it from one of your recent posts).

His answer regarding Mayo's plans for future research on EM was the following: "We best gather information on what treatments work best for patients by asking them to message us via the online patient portal." That was the end of that topic..

In response to my question about Lidocaine infusions, he opened my patient handout folder and pulled out the stapled handout of journal articles on EM and pointed to the second to last article on the last page titled:Lidocaine and mexiletine therapy for erythromelalgia.Kuhnert SM1, Phillips WJ, Davis MD.Arch Dermatol. 1999 Dec;135(12):1447-9.PMID: 10606048https://www.ncbi.nlm.nih.gov/pubmed/10606048He asked me if I had read the article, and admittedly I had not, but promised him I would.I had spent several hours in the Patient Library at Mayo watching videos on EM, I had watched a hundred times as well as reviewing my folder stuffed with handouts.I then mentioned that a local St Cloud, MN father and son both are now pain free thanks to the Lidocaine Infusions. Dr Davis did say he watched [amy35]) husband's story on Kare 11 news Christmas Eve. He was happy to hear that.He also said if I ever decided to consider Lidocaine infusions, I could receive treatment "locally in the cities".

Bob's Protocol.. I gave Dr Davis the handout and asked if he was familiar with heat desensitization therapy for EM. He indicated he was not. He reviewed the two pages I printed out for him and his response was " I would believe that heat would worsen EM symptoms, but you can certainly try it if you want."I then mentioned that I have read mixed reviews in the forums, but have read that numerous people have benefited from it tremendously.

I am still mentally processing the past three days.I was treated very well at Mayo Clinic by Dr Davis and his colleagues. I am at peace knowing I have a diagnosis. I am grateful I do not have any evidence of underlying disease. I am hopeful that one of these 3 creams will help relieve my discomfort. However, I still wish to know why? I want others to know why? I wish for everyone to be pain free and live a normal life.My best advice to anyone who has or is planning to visit Mayo for EM is to message Dr Davis, via the patient portal with updates. Let him know which treatments did or did not work for you. He asked that I message him in 3 months and let him know which of the three topical prescriptions he prescribed worked the best.My take on all of this is that Mayo's current method/focus of researching EM is based on patient feedback of their response to treatment. I wish Mayo would conduct more official research, as Dr Davis even admits in his Up-to-Date article that EM is poorly understood.

As I mentioned earlier I have included my visit note below highlighting my diagnosis and treatment plan. Hopefully some of you will find this helpful.

IMPRESSION/REPORT/PLAN

#1 Erythromelalgia involving hands and feet and occasionally face by 9 months

Comment-I discussed with Ms Harrill the findings. It is very encouraging that she does not have anidentifiable large or small fiber neuropathy, and of her lab tests are all within normal range. Wediscussed the management regimen as outlined below with her again and I encouraged her to tryparticularly the topical treatments as outlined. We prescribed the topical treatments as outlined undermedications.One of her main questions is why this started. She does point out as detailed in her history on Mondaythat this started after injections at trigger points and she wonders whether the steroid injections couldhave precipitated the erythromelalgia. I advised her that while these were temporary related in onset, itwould be difficult to see a mechanistic link between the injections into her neck and the development oferythromelalgia involving her hands and feet. It also would be difficult to say why injections done last April would have led to sustained episodes of erythromelalgia now.

#1 ErythromelalgiaPLAN

  1. Patient education-publications concerning this entity.
  2. Prognosis- over time, the symptoms may worsen, stay the same, or get better. It happens about equalportions of people over time. In approx. 10%, patients may report resolution of symptoms
  3. ManagementThe aim of management is that you will get back to as normal a style of life as possible. Our aim is to getyour erythromelalgia under control and also to learn to live with whatever is left.My experience is that most patients can get acceptable control of their symptoms with lifestylemodifications and topical treatments; only a minority of patients need systemic medications.There are three main strategies that we use to achieve this*the use of topical medications for this,
  4. the use of systemic medications for this, and
  5. the employment of the Pain Rehabilitation Center in patients who are very disabled by the symptoms.Lifestyle changes-- avoid situations as much as practically possible that set off symptoms, while keepinga balance and trying to maintain a normal lifestyle. This is a difficult balance, but ideally, she should beable to return to a normal style of life and not be inhibited by her symptoms as this is the aim of themedications that we have been prescribing.

Cooling behaviors:Moderation is key.

  • It is okay to use techniques that cool the affected areas for short periods of time (eg 5 minutes every1-2 hours), but these should not be used for prolonged periods as they can damage the skin, vasculatureand nerves in the affected area and in the long run make the pain worse and lead to complications.
  • Also moderation in the technique used is advisable- avoid extreme behaviors. Cool water indirectlyapplied to skin is advisable - but not ice or very cold water directly applied to the skin. Examples that patients report that help include Chillow pillows but again, these should be used for short periods. http://www.chillow.com/chillow.htmlSuggested activitiesMany patients report that swimming is helpful to them.
  • Patient support groups- The Erythromelalgia Association, chat groups on Google, Yahoo, other socialmediaTopical treatments that may help are as follows.Each should be tried one at a time for a period of 2-4 weeks, if medication does not work then move onto the next medication.It would be very helpful if you could let us know which of below you have found most helpful via thepatient portal after approximately 3 monthMost of these prescriptions are compounded products: it is best to have compounded creams filled atMayo Clinic as they are familiar with how to compound these specific ones

For the pain:

  • A trial of amitriptyline 2% and ketamine 0.5% applied up to three times daily. Many patients reportthat this helps tremendously with their discomfort, but other patients say it does not work at all. I haveadvised to try this. If it does not work, a trial of giving a mixture with a higher concentration of ketaminesuch as 5% ketamine instead of 0.5% ketamine could be considered as a trial.o Amitriptyline 2% combined with ketamine 0.5% in lipodermo Amitriptyline 2% combined with ketamine 5% in lipoderm
  • Trial of pain-relieving rub or patch (Ultra Strength BenGay Cream, Ultra Strength BenGay PainRelieving Patch, others),
  • Voltaren 1% gel applied QID
  • gabapentin ointment 6% in aquaphor or vanicream
  • High-dose topical Capsaicin patch (Qutenza)--this recently came on the market, but we have notused it in anybody with erythromelalgia yet. Again, this might be a consideration in the future if the othertreatments have not worked. http://www.qutenza.com/

For the redness:Available over the counter:

  • Afrin spray (oxymetalazine) 2-3 times daily to affected areas
  • Preparation H applied 1-3 times daily to affected areasAvailable by prescription
  • Once-daily topical brimonidine tartrate gel 0.05% (Mirvaso) (FDA approved for the redness ofrosacea) could be tried- apply 1-3 times daily
  • Topical Timolol
  • Topical midodrine 0.2% in Vanicream applied TID (compounded only at Mayo Clinic)

Systemic treatments:All systemic treatments are associated with potential side-effects, and different people respond todifferent drugs. These are summarized in the manuscripthttps://www.ncbi.nlm.nih.gov/pubmed/12003720Drugs that have been reported to help include:

  • Aspirin- Trial of aspirin (if not contraindicated) 325 mg daily x 1 monthBecause a subset of patients respond to aspirin (particularly erythromelalgia associated withmyeloproliferative disease), it is always worthwhile trying oral aspirin first for up to a month to see if thathelps symptoms
  • Gabapentin
  • Pregabalin
  • Venlaxafine
  • Other drugs used for small fiber neuropathy
  • Mexiletine
  • MisoprostolPain Rehabilitation Centerhttp://www.mayoclinic.org/pain-rehabilitation-center-rst/Other considerations:
  • Botox- a couple of case reports suggest that it may help
  • Scrambler therapy- pain consult (specify this)a. Scrambler therapy is an experimental technique being tried for patients with erythromelalgia. If youare interested in this technique please visit this website: http://cprcenters.com/Stephen J. D'Amato,MD,FACEP is the physician who specializing in administering this treatment:(Calmare Pain Mitigation Therapy); his receptionist and assistant is Bonita SpringsScambler is a technique that scrambles nerve signals. You would visit with Dr. D'Amato's team whowould decide if you would be a candidate for a trial of this therapy and discuss this with you. This can beexpensive, usually not covered by insurance, and require multiple visits. We also don't know if it willwork for you.
  • IV solumedrol if sudden and acute in onset, short history
  • IV magnesium: 1 gm, frequency every 1-2 weeks, depending on how long effect last; then use 2 gmif toleratedhttp://sharing.mayoclinic.org/discussion/breaking-away-from-the-pain-with-the-help-of-the-scrambler/
  • Transcranial magnetic stimulation

http://www.mayoclinic.org/tests-procedures/transcranial-magnetic-stimulation/home/ovc-20163795

Other medications that could be tried in the future:

Lidoderm patches-- could try Lidoderm patches. These are easiest to use on the dorsal feet.

this is the most helpful post i've read, thank you

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Can anyone message him? I’m happy to let him know that oxtellar and propranolol has been very helpful for me cutting my flares down especially in the face and hands and lessening them in the feet.

I wish everyone with EM could message him? If you are a current, or former patient of his at Mayo you can message him via the Online Patient Portal. I am so happy to hear you found a treatment which has helped you!!!

Oh nope ? mass general neurology. They have been great ?

laura65303 Mass General has been doing a lot of research with neuropathy treatments. Mayo is years behind and has even referred many there when incomes to other issues non EM related.

How has Mass General been great?

lois5700 I read they are doing research in autoimmune small fiber neuropathy and have done research on fibromyalgia causes and the way nerves react. Not saying great for all but offering up some newer treatment and studies. More than some other places.

lois5700 I really like my doctor. He knows his stuff. He works with me online at this point until I feel like I need to come in again. The drugs I’m taking help to reduce my flares.

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duloxetine and pregabalin have enabled me to walk and get back to work, but still my feet flare during the day and I don't know how to control this. I've put on so much weight with pregabalin. Might see if I get get some of those compound creams made up

I would certainly try one of these creams! I am going to fill the amitriptyline-ketamine cream first before the others. I attached a photo of the names of all three prescriptions I received.

thx nicole59 I'm going to print that out. Feel quite excited that one of them might work. I get to the point where I can hardly stand on my feet anymore, yet I still have hours of the working day left. I think the A-K cream sounds like the best first choice too.

louise85 You are welcome? Please let me know if you get one prescribed. I'll provide an update as well?

nicole59 yep. Good luck:)x

I will love to hear if anyone has relief with these creams?❤️

baba82915 asking my gp for it tomorrow. Fingers crossed ?

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Am I the only one a bit annoyed by this?? cindy5, I can kind of see you being on my side here! ? This makes me so thankful that I never made the trip from WA to Mayo like I was looking at doing. I'm so thankful that I found a doctor in northern ID who had done his residency at Mayo and had seen several cases of EM and was able to diagnose me there. I would have been so upset if I had spent the money and dealt with the hell that would have been flying at the time (my flares were completely out of control!) just to have that kind of an experience.

I've said again and again that the best medical advice and information I've received about EM has been in these FB communities.❤️ I'm so incredibly thankful for all of you! If doctors like this are really interested in gathering information about EM and finding out what truly helps, why don't they join these groups??? Why is it that the only feedback they're willing to hear is from patients they've personally seen? I suppose it's so that they can confirm that the patients actually have EM, but it drastically limits their understanding and patient pool from which to gather information.

From what I've seen, very few people with EM have received helpful info from Mayo, and that just seems irresponsible and unacceptable to me. I still say the very best thing you can do for EM is find a pain specialist willing to educate themselves about EM and willing to listen to YOU as you bring them ideas from this group, and jump through the hoops of trial and error with you. I know that's how I finally found relief. And some of the most common drugs that actually help people (tegretol, pregabalin IN CONJUNCTION WITH CYMBALTA, etc.) aren't even mentioned in his "plan." I haven't seen many people benefit from the compound creams or other topical treatments he mentions. He doesn't mention elevation or cooling with a fan, which is helpful for many of us, and the insinuation that the majority of us can just hop back to a normal life with his "treatments" feels condescending and minimizing.

All right, I'm done with my rant. nicole59, thank you so much for taking the time to share all of this. Thank you for trying to share Bob's protocol with him, as it seems to have really helped many people. I'm sorry he seems to have brushed it off in favor of topical creams that seem to help very few people. I love that you asked him about what research is going on for EM. Sadly, I'm not surprised that there really isn't any. I truly hope that as we continue to spread awareness, that will change. I hope you feel like you got SOMETHING out of that visit. I hope that you listen to your gut about what might have brought on your EM. I know most doctors think I'm crazy when I tell them that I'm almost positive mine was brought on in large part by taking Ciprofloxacin. Again, thank you for sharing your experience in such detail!❤️

I totally agree! It’s insulting that patients spend their hard earned money to see this man and he ultimately has nothing to offer. Saddens me that there really isn’t anything in the near future either. I couldn’t have made this trip but I feel bad for those who did.

I completely agree. I doubt she wants to hear my opinion on all these stupid recommendations, from me or you, because she just spent thousands to go there but what a waste. I also agree more information on these groups than from Davis.

This list of recommendations is basically a copy and paste from Dr. Cohens site. And a copy paste is much cheaper.

I completely agree also, I was diagnosed with Idiopathic EM ( No known cause) by a Neurologist @ Mayo Clinic here in Jacksonville Florida who did his Residency in Minn. He told me the plain truth that there is no cure, and any medication or combo of them will only bring 30% relief and at most 50% but is rare and that EM in most patients only worsens over time.... Also I know most want a reason why but was told there is no rhyme or reason as to why except that you either have Idiopathic EM no known cause or it's secondary to another condition. EM is not a primary condition that has a reason why or how you got it. I'm on 90mg of Cymbalta and am ONLY getting about 20 - 30% relief after trying them all. Mayo is great for being diagnosed and that's it. My regular Neurologist was given the treatment plan and took over and believe it or not she knows about EM But sent me to Mayo to get the official diagnosis which was covered under my healthcare plan thank god. Since diagnosed I've been disabled and on disability with the same healthcare plan. In my personal opinion if you are looking for a reason as to why you have EM or what caused it you are wasting your time, acceptance that you have it and moving on is the answer. It took me 3 yrs too accept it and have had it now since 2008 but diagnosed in 2010.... That was a long journey to find out what I had then having to accept that there is no cure, There is no cause for having it.... It's hard I know but looking for why to me is just futile and a waste of time. Trying to find some relief in any form has become my focus.

cindy5 and - EXACTLY.❤️

steven4689 - I agree, that's kind of the point I'm at, too. Acceptance. Not giving up on future advancements and discoveries, but accepting that for now there's not much more to be done for my case, and I'm just thankful it's better than it was.

One note on what you said - there IS primary EM, caused by a genetic mutation to the SCN9A gene.

heather53 Primary EM may be caused by the SCN9A Gene but they still don't know why and I do believe some even with secondary EM have the genetic mutation but that's besides the point as there still in no cure and no I haven't been tested for the gene mutation because what is the point the outcome is the same.... No Cure, No relief, Just more answers unknown so to me why bother.... It is what it is.... EM is EM and it's just that others unfortunately have to suffer with it as a secondary condition to whatever..... My Daughter has MS and has the same symptoms as me and could have EM as a secondary condition but her Neurologist says it's from MS, I disagree but what is the point to have her diagnosed with EM? It will do nothing but stress her out more..... Not much point IMHO.... She is also Disabled and on disability and has a hard enough time.... She could have secondary EM but again what's the point as there is no cure and besides she's already tried all the meds for EM with no success for her MS.

I do agree that most should not give up on future advancements for EM medications but I have heard for the last 8 yrs one is around the corner..... Too late for me as I will be turning 60 in a few days and doubt it will happen in my lifetime but hopefully it will for most of you that are way younger having to deal with this horrible condition that still most Doctors or Specialist no little about.... But I will spend the rest of my life bringing Awareness to EM.

I have to agree here that I don't regret canceling my trip to Mayo's several years ago because my insurance would NOT have covered it and all the information that was shared by those who did go, I received from a local dermatologist who diagnosed me, although most of my help has been back to my primary care physician. I would have hated to gone all that way and go in debt for something I could have received locally.

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I find it interesting that he is telling you that you get get a continuous lidocaine infusion locally in the cities. I tried for 13 months to find a provider to treat my husband after my son was successfully treated. The University of MN was almost prepared to admit him the same week he was admitted to St Cloud Hospital. Providers don't jump on ICU admissions for a disease very few understand or even know about. Sure you can find someone to do a outpatient infusion of lidocaine but it won't likely help you. The article he is referencing was updated in 2005 and is what I used to find someone to treat my son. It's a shame Mayo doesn't study this on others.

It irked me too. I love that you can go do that locally. Like Its super common. And yet they don’t offer it up themselves for locals like me. And the BS that people go on to live relatively normal lives with adjustments. It’s like this: they make the most money off a new first time patient because of doing tests. Oh and 46k for their three week pain management session. Calmare scrambler therapy is $400 a pop x10 visits. I think this was good for you to have gone so you can check it off the list and maybe you’ll stumble onto a nugget in this journey.

I 100% agree with you. When I message him in 3 months I will ask him again, but this time request names of specific providers he recommends.

collette6 - Did you have any success with scrambler therapy? Sadly, it did nothing for me. ?

heather53 I chose not to have it once ins refused to pay and my neuro doc at Mayo said results aren’t so positive for most.

We got my insurance to cover it, and I was so, so hopeful, but it didn't work. It was a huge let down! I also tried a spinal cord stimulator with no success. ?

heather53 that’s too bad.

collette6 Yeah, easy for the doctor to say that people go on to live relatively normal lives with adjustments. So dismissive of the painful reality for many EM sufferers. Walk a mile in the shoes of someone with EM, doctor, and you won't treat it so lightly!

Amy Junes, would you mind sharing the link to the article you found from 2005 that discusses lidocaine infusion therapy. I find it very interesting that you had to trouble finding a doctor who would treat your husband with lidocaine infusion therapy after it had helped your son so drastically. Thank goodness you're persistant! God bless you!

amy35 thank you so much!

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nicole59 thank you for sharing the content of your personal journey. For many of us who can not afford or access Mayo Minnesota. You have given a personal account, that takes brave and giving spirit to share. You selfless sharing, is appreciated so that others who are wanting the Mayo handouts can now read them. Information is power, and personal journeys are intimate. Thank you for being open to share your quest for things to try. I wish you improvement and I am glad you have hope and options to try.

You are welcome ? Thank you for taking the time to read my novel lol

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Thank you for taking the time to post your experience! I’m glad no serious underlying diseases/disorders were found. I hope one of the treatments will give you some relief. Good luck.

Thank you Carrie. I am feeling blessed but still puzzled. Optimistic that one of the treatments will work ?

nicole59 I understand being puzzled. I’ve had EM for over 20 years and have never found a cause. Hopefully you find the right treatment for you.

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Perhaps it's just coincidence, but my EM began prior to my diagnosis of compression on my cervical spine and spinal cord damage. I also had Dysautonomia and spinal cord damage can cause that. I'm still unsure if it was the cause but I wonder if you have cord damage? The only thing is, my EM has greatly improved since even before the surgery to decompress my spine, but especially since then. Any chance the neurosurgeon would order a new MRI?

Interesting. I am happy to hear your symptoms have improved! That is wonderful. My MRI prior to surgery showed disc herniation and spinal cord compression C4-5 C5-6 C6-7. I saw 4 neurosurgeons before the U of M. All but the last one recommended a 2 level fusion. I was desperate to not have one. The surgeon at the U offered to do a 1 level disc replacement on the worst disc C5-6 and hoped that C6-7, would heal. I guess cervical disc replacement is only approved for one level. I felt amazing for the first 3 months after surgery but now feel worse. I had a CT again in April which showed continued disc herniation/compressed cord at C6-7. Although it had improved. I since feel worse. I met with neurosurgeon last month. X-rays looked normal, but she was hesitant to offer another MRI. So now I'm having patch testing in March to see if I'm allergic to any of the metal components.

I am so happy to not have full-blown EM, but I do still have very hot and burning palms and soles. It's just so much better. I'm not sure if the EM was from the cord damage, but I wonder. I'm still being seen by a Rheumatologist. But, as for your situation, I'm surprised you did not have a cadaver bone instead of an artificial disc, especially with multi-level problems. I have heard of allergic reactions to the metal. I hope you get answers and it can be resolved.

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I tried the quetenza patch at least 5+ years ago so the fact that he’s saying it recently came on the market is a little odd to me. So it makes me wonder why he has not used it on any EM patients. Maybe he suggests people doing it in their hometown? I’m glad you got info and questions answered.

How did you find the quetenza patch, may I ask?

(I meant, was it helpful?)

Maybe it was a typo in his "template" for my plan of care, indicating that it is "new". Maybe Dr Davis needs to update that template of his.. I will add that to my 3 month f/u email question. Does he think it is truly new, if not has anyone had success with it, that he is aware of?

I've reads stories on how painful it can be when administered. It's hot chili peppers at 8% burning your nerve fibers I think.

collette6 I wonder if a dab of wasabi would have the same effect? ?

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Super helpful post. Thank you so much for taking the time to make it and share?

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