Looking for Ways to cope

I started to write this as a reply to our colleague who just went to the Mayo Clinic but i have gone so far off topic that I just posted this as my own post asking for advice.
I am perfectly safe- i have three therapists and a primary who are all very nice. But they don’t understand what it feels like to have your life taken away from you.

First, i want to start off by sending you and all who are afflicted healing thoughts and prayers for an end to the suffering. I have EM (diagnosed in June 2014), I have no underlying conditions. My doctor has diagnosed me as having EM from nutritional neuropathy. I was under stress at work and i don’t eat when stressed (anorexia on and off since teenage years) So a was starving myself from 2008 through 2013. My feet were blue in 2012- the lack of nutrition to my feet and in August 2012 i was at 75 pounds and my feet became numb or “muted”. I could live with numb. I couldn’t absorb any food -everything just went through me. My feet and legs started to burn - nerve damage in July 2013. But I had no redness- no flares until March 2014.

So my question is this: How would the trip to the Mayo Clinic help if I have had all the testing done already piecemeal? How much did this whole examination cost - or was it covered by your insurance? I am sure my insurance wouldn’t cover it and I have already tried the Gaba and have the same compound cream that they give you - my own doc in NYC had it made up for me and it doesn’t work. I have tried like most of you countless drugs and off-label uses of meds. Even tried Nitrol paste (for angina which i don’t have) and that sent me to the ER with heart issues.

Some have told me to go to the Mayo but what you describe seems to be what I have already received piecemeal here in NYC from countless providers. I had nerve biopsies (negative for small fiber neuropathy) and EMG studies all normal . Everything is normal except what isnt’. i have even tried medical marajuana which is legal in NYS and i am registered and have the permit. Nothing works for me but the fan and I work FT and live an insane existence taking off shoes and socks at work and bringing a fan to all my meetings. I am lucky that my employer will allow this under the ADA act (reasonable accommodations).

So what is the answer here. Are we all saddled with this forever? My life was complex I am in my 60s and i spent my life till 57 living for everyone else, afraid to say NO and afraid to care about myself. That is what caused my EM. Not taking care of ME and being a people-pleaser. I wish everyday that i could go back in time and tell every toxic person who invaded my life to shove it as i should have when it happened. I was a victim of child abuse (verbal and physical- not sexual) and I have burn marks on my arm where someone chose to put out cigarettes on me.

I am looking for some ray of hope- i was hopeful but as i approach 5 years in (July 10, 2018), I am feeling trapped like this and I feel have nothing to bring me joy anymore.

Can people share how they cope? I see a therapist for chronic pain but I see this illness as a product of everything that i did wrong and that others did to me and I let them. So i blame myself and I guess i blame others to for abusing a child and I never escaped the issue of abuse till my feet burned and I realized i didn’t deserve this pain, the other abuse i thought i deserved- by EM i thought was sent to make me “see the light” and change my life for the better. Now i want to allow myself to do things with people but I can’t because of the EM. it is all very twisted and if i didn’t work i would be insane because all i do is think and think about all that went wrong.

Any ideas are welcome.

Jordy

Hi Jordy -

My heart goes out to you when I read your post. I will say a prayer for you.

I don’t have answers. I was seeing a therapist as well who was helping me deal with feelings from chronic pain + depression + anxiety, but had to stop because leaving my home just became too hard. Perhaps though that you would benefit from an alternate or additional form of therapy – eg CBT if you are in psychoanalysis. I found that both simultaneously (I saw 2 different therapists for a while) were helpful and felt just better able to deal with my life. I honestly wish I had tried this approach much sooner. With CBT I was able incorporate things like meditation, mindfulness, radical acceptance, challenging thoughts etc etc. There are also variations of CBT like DBT or ACT which I think try to include a sense of acceptance/compassion to where you are at + aim to improve distress tolerance.

I think self-help books along these lines can be very helpful too. I also think just reading about chronic pain + the mind (lots of books out there on this) is helpful for me. I don’t know how seriously pain specialists or other pain sufferers take such ideas, but if nothing else it gives me hope that things can change + examples of neuroplasticity. I don’t think EM is a psychogenic condition at all. But some strategies I encounter – such as visualizing techniques, visualizing the pain neural circuits in my brain continually shrink while the burning happens – I find comfort in.

I often blame myself for my burning onset. Like you I had anorexia on and off for many years. My EM onset happened a little while after I really kicked that part of my life to the curb. I think often, maybe I did damage to my nerves, or put my body in heat conservation mode for far too long, and somehow I’m paying the price for it now. I don’t know of the link or if there’s a link but I do know that some of the same thinking patterns I had during my anorexia are popping up but now centered around my burning/chronic pain – the obsessive thinking tendencies + overanalyzing tendencies + wanting to punish myself in particular that might be distractions (still) from self-acceptance, defining and living by my values, and finding some good in each day in spite of chronic suffering.

WHen I read your post my sense is there’s a tension between wanting to punish yourself and having so much anger to how things have been and how things are now. I wish I had more answers but I do think that your anger (coming from an anorexia history, where we try to literally + figuratively inhabit as little space as possible…) here is life-affirming, and hopeful in its own way.

I will send a prayer for you tonight. Do take care of yourself.

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I find most depressive thoughts come from a conflict between how things are and how one would like things to be. It’s upsetting when we aren’t able to live our best selves.

What would you be doing if you didn’t have EM? How would your life be different? I am impressed you’re still working with your disability. That shows a very strong sense of character.

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Hi Jordy,
Your EM onset sounds very similar to mine. I don’t usually reply to people’s posts but am to yours. I have tried countless drugs and creams with very little help except to make me groggy. 6 months ago I started an accupuncture series with an exceptional acupuncturist. She addresses the neurve damage. I also began doing Bob’s protocol. Soaking my feet in hot water and putting away the fans and cooling devices. It was very hard at first but now I am virtually flare free.For the first time in more years than I can remember I sleep with my feet under the covers all night. Best part is I only take 300mg. of gabapenten a day. I feel as if I have gotten my life back. Even considering getting a zoo pass. If you want more info. just email me. Best of luck, Joan

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Hi thank you so much for taking the time to reply. I am having trouble with my iPad so I can’t write as much here as I would like. If you want to email me directly you can email to ■■■■. I would like to know more. If you can’t read the email address please EMSIL me through this site and I can write back from my smartphone which will work. Many many thanks again.

Hi wanted to thank you for your reply. I told Joan below that I am having trouble with my iPad and I don’t remember how to do a private email since I haven’t been online for a long time. If you can email me I can write more from my smart phone. I learned from an ED doc that EM is a common symptom from long time EDs but it usually resolves when you are weigh restored which I am. Thank you so much for your heartfelt post. I so appreciate it! Email me if you would like to take a discussion off line on the open site.

Best
Jordy

Hi Carter,
I want to thank you also. I really appreciate you taking the time to offer your advice. I wish you a good weekend. Hopefully as psi free as possible.
Jordy

Hi Joan,

I’ve only been a member for a couple of weeks, so I’m sorry if I’m asking a dumb question, but what is Bob’s protocol? On initial reading, it sounds incredibly painful, but I’m willing to try anything!

No need to apologize. I stumbled across it while reading different topics in the forum we all belong to. It’s basically soaking your feet in hot water (I do 110 degrees) for about20 minutes followed by a very hot shower. Then you have to let your body cool down by itself. No cooling devices, no fans etc. I will tell you I was super reluctant to try because I had gotten so bad that I was in front of a fan continually. House was cooled to 68 degrees. I would run my errands first thing in the morning . Well I am here to tell you that it has been nothing short of a miracle. I no longer need to cool my feet. I am even sleeping with them under the covers. I am only taking one 300mg. of gabapenten. No other drugs. I still have neurve pain on the right side of my right foot but no swelling and burning. It’s as if my vascular system has returned to normal. My doctor said it is similar to Bio feedback.

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Thanks, Joan! I will look into it, but I don’t want to try it until after I’ve been to the Cleveland Clinic in June. I want them to see the full-on devil feet!