Hello, i am pretty new here. i have had em now for 10 years mostly suffered in silence . i had my first pain management meeting this week, i as refereed to them by my neurologist for cervical stenosis. BUT i dont have any back pain… yet
i steered the conversation toward my feet. i broke out in tears. i talked about not being able to live with this anymore.
she was not familiar with em. she said she will order a biopsy of my foot skin and see if i have small fiber neuropathy
i dont hink its that . it is EM i am positive. my treatment options she said would be limited to antidepessants and maybe medical marijuana. i am on cymbalta already
has anyone tried med marijuana and has it helped??
i feel like i cannot go on like this anymore. i never goes away not even for a second. i flare the same time everyday and it is excruciating. my best friend is my recliner and my fan
sorry, rambling so very tired. why did this happen to me
is there any hope
There is always hope. Since you haven’t tried any interventions yet (nothing over 10 years?!?), you have more hope than some. I don’t think your doctor is exceptionally knowledgeable to say your treatment options are limited to antidepressants and medical marijuana. I’m treated by an anesthesiologist who is also a pain management specialist. When I suggested an antidepressant initially, he flat rejected my suggestion and said it wasn’t what he would try first. Some have found relief from antidepressants, but it is not the only, or even first, option for EM.
A few important questions you should ask your doctor:
1.) Are you currently treating any other patients with EM?
2.) How many total EM patients have you treated during your medical career?
3.) What medications have you prescribed for EM and which, if any, have you had success with?
These questions will give you an idea of how much experience your doctor has with EM.
Hey Kitty,
My situation is NOT EM related. I have a TBI and have required multiple neurosurgeries which has messed with many of my body’s systems including temperature. I too have had the ‘joy’ of attending pain management clinics and been diagnosed with cervical dystonia and, like you, I have no back or neck pain. I had multiple treatments of Botox, neck, shoulders, back and face. I’ve been on all sorts of uppers/downers, which were just YUCK. I’ve been given many diagnosis for my continuing symptoms, but no definitive answers. Every dr has had their own ideas.
And yes, I use medical cannabis. It’s not the ‘miracle drug’ that some may profess it to be, well, not for me. I find I still have the need for an opiate for pain management
BUT
Where I find it does help is that it helps me to ‘switch off’ to it all. Yes, I’m still having symptoms but my mind is not going over and over those symptoms. They’re still there, just not at the centre of my thoughts. For me, personally, that ability to ‘switch off’ helps MASSIVELY.
I have to say here, this is for me personally and by no means am I recommending it but for many of us with rare conditions, when the medicos run out of answers, we start looking at alternatives. Heck, if it’s been suggested, give it a go IMHO. You never know, it may just help, not cure, just help.
And don’t be apologising for rambling. At times we all need to simply ‘get it out’ and what better place to do it than with people who understand. We understand.
You can have EM and SFN at the same time. I have both in the toe areas of both feet. This was confirmed at Mayo Clinic, Rochester. I manage the pain during the day with CBD (as needed). I manage the pain at night with Vicodin (9pm, 3am).
I have found that Lidocaine patches applied to my feet during a flare help. Antidepressants, Gabapentin, Cymbalta, Sodium Channel Blockers etc… did not work for me, however many people have found relief from those things. It seems that what works for one person with EM doesn’t necessarily work for someone else.
Usually one drug isn’t going to do it. Gabapentin did not work for me but lyrica does help. I also take salsalate which is an aspirin based anti-inflammatory. My insurance refuses to pay for it but I can’t live without it so I just cover it. I also take cymbalta and CBD oil (not any will work). The CBD oil also helps greatly with hot flashes. I also have to put lotion on my feet after a shower or they hurt. I know I’ve had EM most of my life but it’s only been the last 6ish years the unbearable pain started. Its pretty bad when you can’t leave the house without stopping for ice and a bucket. I’m finally in a place where I can live with it. I still have flares and pain but I don’t need to soak them anymore and I can mostly live my life. I still have fans and a window air conditioner in my bedroom even though we have central air. Salsalate, Lyrica, Cymbalta, and CBD oil. If you want to try the CBD oil, I get mine from Nuume organics. They are cheaper than most too. All of my drugs were subscribed by a Neurologist at Indiana Health (thru my PCP) who practically discovered EM. He treats a lot of EM patients and goes around the country educating others about EM. I too went thru many doctors that didn’t even know what EM was and were unwilling to diagnose it. There is relief out there but unless you have a doctor willing to spend some time learning about it and willing to diagnose it, you are wasting your time with them. I drive to Indianapolis (about 4+ hours) to get diagnosed. The Neurologist took one step in the room and said, you have Erythromelagia. I felt ever bit of my breath leave my body in a sigh of relief to finally have a diagnosis. It still took almost a year to get on the right mix of drugs. It could have been quicker but insurance companies always want you to try the cheapest drug first. I really hope you find some relief soon. Let me know if you have more questions or need anything. Good luck.
I found out at the Mayo Clinic I have EM, SFN and LFN, I also have deep vein insufficiency in both calfs. So the vein insufficiency just sends more blood to my feet. I finally found a pain management doctor at UCSD that really knows about EM and there are other treatments including lidocaine infusions and mexiletine, which I take for some pain relief.
Hey Pat,
I believe UCSD stands for University of California, San Diego.
With many rare conditions trying to find practitioners with a sound knowledge can be a REAL challenge. Some make out they know-it-all when their information often comes from a book. I have seen many a dr for pain management but very few have a comprehensive knowledge in managing pain with a specific condition. Often they may have a broad overview of pain management, but once those options have been exhausted, often their knowledge can be found to be lacking.
Universities can sometimes have individual specialisations and it sounds like Jewel has been fortunate enough to find one such university.
It is the University of California San Diego. It’s a teaching hospital. My friend, whose mother had numerous rare autoimmune diseases, told me to try them as they were the only ones that helped her.
I requested an appointment online at Mayo Clinic and received a call within 12 hours, in short was told I would need files from Dermatologist stating I had EM. Have not seen a Dermatologist or a Veterinarian, only two Drs. I have not tried. Any advice ?
I had seen many doctors and tried 15 or so meds, patches and compound creams. I think they want a letter from some specialty doctor (mine may have been a rheumatologist) that gives a definite diagnosis before they will schedule an appointment. Before Covid the waiting list was a year, but maybe it’s not as long now. I saw Dr Davis in their Dermatology Department.
Mexiletine was the sodium channel blocker that I have tried. It did nothing for me. Each individual is so different. My lidocaine has to be directly applied to the area for any affect.
Interesting. Perhaps you get an analgesic effect from topical lidocaine that doesn’t affect the underlying pathology. Sodium channel blockers, when effective, are believed to directly counteract the underlying pathology to stop symptoms.
I scheduled an appt with pain mgmt and upfront they told me they don’t give out pain meds. Like I was a druggie. They offer lyrica and that’s it, which did not help.
Hey Hayley,
I’m sorry to say this but your experiences with pain mgmt are not unusual. I found that if my pain was muscular/skeletal they had treatment options, but anything outside of ‘normal’ and they had very little in the way of options. I have a brain injury and with a couple of the surgeries they had to go through my hypothalamus (the body’s temperature gauge) and I’ve had temp issues ever since.
When I tried to explain my symptoms the medicos looked at me like I was an alien with 3 eyes or just seeking medications. OMG, I have enough meds to stock my own chemist. I don’t want more. ‘Well, that can’t be happening…’ one nurse stated. But it is happening, so now what ???
‘We can send you to a counsellor’ as if talking about it all again and again is going to help or ‘We can offer you psych meds or Lyrica’. I gave Lyrica a trial. I thought ‘It may help’. Ohh boy, those things certainly ain’t for me. YUCK. I eventually gave up and manage things the best way I can for me, not them.
But again, I’m sorry to say this but your experiences are not unusual. I’ve been there too.
I can’t take pain meds for more than a couple days or I get sick.
I have SIBO or bacterial overgrowth and I’ve told many doctors I have that and they have no clue what it is. And then I have to say it was dx’d by a gastroenterologist because they think I’m making it up.