Who diagnosed you and what meds are actually working for you?

I don’t consider myself officially diagnosed and I’m having a hard time getting anyone to officially diagnose me although my PCP has been trying to treat my EM. I have no doubt in my mind that I have primary EM. I’ve had it my whole life (didn’t even realize it was a thing until last year) but it’s been fairly manageable up till the last year or two. Basically since I hit menopause. I have always had trouble wearing any type of closed shoe. Even flip flops bother the bottom of my feet. I’ve never slept with my feet under the covers, always have a fan on my feet. It affects my hands/feet/face. Mostly my feet though.

I’m about at my wits end though because I can’t do anything anymore without a flare. My feet flare at least 16 hours a day. I don’t sleep well. I get up and soak my feet several times during the night (day too) just so I can get enough relief to go back to sleep for a bit. I also have Ankylosing Spondylitis. I’ve been treated for the last 30 years by a Rheumatologist but he retired last year before I had a chance to get him to diagnose my EM. I started seeing another Rheumatologist but he takes a very lazy/minimalist view on drugs and didn’t want to diagnose me either. So I’m trying to find another Rheumatologist. I currently have an appointment for the one that took over for my old Rheumatologist’s patients but I can’t get in until the end of August and I don’t have high hopes for him either because he just doubled his patient load. I’ve looks at reviews online for all the Rheumatologists around me (there aren’t many) and none of them have real good ratings.

Has everyone been diagnosed by a Rheumatologist? Do I have other options? Also what drugs are you taking that are actually working for you. I take Salsalate and Nortriptyline, along with all my other drugs (Enbrel, Tylenol 3, Triamterene, Atenolol, Meloxicam) but it doesn’t help. I have tried Gabapentin in the past too but that didn’t work either. I live in lower Michigan and would have no problem traveling to see a good Rheumatologist if anyone can recommend one. I don’t want to spend another summer in air conditioning on my butt so any help would be greatly appreciated. My husband will appreciate it when I quite freezing him out every night too. He’s looks like an Eskimo most nights. Bless his heart though, he never complains.
Thanks Jan

Hello! I was finally diagnosed by a neurologist. After trying many different combos, so far Venlafaxine XR (225mg) and Propanolol (20mg in morning and 10 mg at lunch) has worked the best. I’m not flare free by any stretch, but more comforrable than I’ve been in a while. I also take Butterbur and Feverfew (herbs). Wishing you the best of luck. Stay hopeful! Keep researching, keep asking and stay the course. You will find something that gives you some relief. Best of luck. Blessings and prayers for you!

Bootcamper

I was dx’d with Lupus first but then dx’d with a spondyloarthritis which made more sense to me being that it affects the sacroiliac joints and there are nerves that go from there to my feet but I was just “today” dx’d by a neurologist who said I have primary Erythromelaglia. Not sure where he’s getting that from but I was dx’d so that is a miracle for me since I’ve had this since 1998.
When I told him of my struggle to get dx’d, he said that Dermatologists are more educated about Erythromelalgia than any other doctors.

Hi bootcamper,
When you are mentioning your meds do you mean to say that they are preventing flaring episodes? Or do the meds help you not feel the flaring and all it’s accompanying issues (like swelling& pain)? I’m trying to find something that either prevents (wishing upon a star) flaring or greatly reduces it. Can you explain what each med seems to be doing for you? I’m hoping I don’t have to go on any long term meds, but this EM wants to kick my butt! I currently getting some relief from feeling the heat and pain with a spray of Biofreeze when my EM is at it’s worst. It actually seems to lessen the duration of my night time flares. Thanks so much!!

Hi, I have finally found some relief from using doterra essential oils, frankincense and myth. Apply topically to feet 2 x day.

I was diagnosed by a hematologist but I also see a physiatrist and rheumatologist. I’m also waiting to see a neurologist. At this time, the only med that really helps is pain med, but I also take gabapentin and aspirin. Nothing really helps with flares but pain med helps with pain.

I was diagnosed by an anesthesiologist who specializes in pain management.

I take Mexiletine (150mg, 3x a day) and Propranolol (60mg extended release, once a day).

Mexiletine is the work horse in that combo. It provides most of the coverage. However, I’ve tried stopping the Propranolol on multiple occasions (most recently again last week) and have found that my symptoms are simply not suppressed as well with Mexiletine alone.

I do well enough with current treatment that I’ve not had to see a doctor about my Erythromelalgia in 20 months.

1 Like

Hello Kimr! The flares are reduced as is the pain, but certainly not gone completely. Best I’ve found for me so far. Best of Luck to you!!

Thanks for this thread. I see my primary physician in a couple of days & will ask her to investigate some of the meds you all mention.

I was diagnosed by a dermatologist that my primary care physician sent me to. My primary concurred. She’s amazing in both trying to discover what all underlies the EM especially since I have other baffling & complicating factors. I feel lucky that gabapentin works for me & I was already on it from an earlier neuropathy diagnosis, but unfortunately only use it at night because of the drousiness. Relatives were successful with gabapentin so I figured it would work for me and pressed a previous much-less-good gp to perscribe it. A neuropathist also suggested duloxetine. It helps some with daytime pain, but not a lot.

jswilcox2, since you’re post-menopause are you old enough to see a gerontologist? That was what finally helped me. All the internists I saw had no clue. One even had the gall to tell me to lose weight - even though I kept saying I gained weight after I had to give up exercise! But symptoms showed up for relatives as they aged, so I figured a gerontologist would be more familiar with the possibilities - although a consulting dermatologist actually pinpointed EM.

Lyrica saved my life. But I had to get to 400-600mg/day. Less didn’t help at all. It still hurts, but I can push through some of my meetings. Then blow cold AC from the car to cool my feet down once I get out. The day I have to walk out of a customer meeting is the day I retire and hang it up. I know that day is coming as it gets worse a little at a time. But hoping I can make it a few more years.

I haven’t tried this. I guess I was putting all my hopes with my new Rheumy but what a disappointment that was. He wouldn’t even talk to me about it. NOT his field. He suggested a Podiatrist who can then refer me to a Neurologist. So, rather than pin more false hope (and months) on that, I’m working on getting a referral to IU Health Physicians Adult Neurology in Indianapolis. Even the receptionist there knows what EM is. At first she told me they were making appointments out into February 2018 but when I told her what I’m trying to get diagnosed with, she said send the referral and they will squeeze me in somewhere sooner. It will be a 5.5-6 hour drive one way but worth it to see someone that has so much experience with EM and BONUS, Dr. Kincaid is even “In Network” with my insurance! Several people on this board recommended him. I really hope they get me in soon, summers are miserable. Don’t know how you people in the south do it, I’m in Michigan and it can be unbearable.

I know you are in a different country to me, but why on earth couldn’t your rheumy refer you to a neurologist rather than have to go to a podiatrist first?

1 Like

UMM…because he is a jerk and didn’t think it had anything to do with him. My old Rheumy retired at the end of the year. He lacked bedside manor but he was a good Dr. I went to a new Rheumy last fall in preparation of that and that guy turned out to be awful. He wouldn’t fill my scripts for the conditions he was treading me for when it was time. This new one is just about as bad. I also have had Ankylosing Spondylitis for the last 30 years. All these specialist want is their $200 for 10-15 minutes. They don’t actually want to talk to you or do anything for you. These last 2 ask my history, a few general health questions, a 1 minute exam, the standard flexibility measurement and they are trying to get out the door.
I had brought a print out on EM and fully intended to talk to him about it but then he was ready to leave and I’m like - wait, I wanted to talk to you about this. He looked at it, pointed out that it was neurological and told me to see a podiatrist so they could refer me to a Neurologist. I was even in full flare, the nurse that took me back brought it up without any mention of it from me. She was awesome, caring, empathetic, wanted to know more about it, said the Dr. would surely know what it was, yeah what joke. So after he said it had nothing to do with him, he was trying to escape (it was almost comical) and I’m like what about my prescriptions, I need a refill. He says to me - Is if for this condition? I said it’s Enbrel, for the condition you are treading me for. He’s like oh, what pharmacy and was gone 2 seconds later. Not once during my appointment did he ask me if I need refills on my drugs, if I was in pain or managing my condition, if I had any questions, etc. He didn’t even order any routine bloodwork to check inflammation or liver function (my old Rheumy did that every year) It was a joke. Why is it so hard to find a decent Rheumatologist?

That is a disgrace you should have refused to pay unless you had to first.

I am lucky I have a wonderful rheumy but he wasn’t first time I saw him. My GP had referred me thinking I had RA but even though my rheumatoid factor was high he said not. It’s cost me loads of money as this was when I was 59. Here we have disability living allowance but you can’t get it if you are over 60. I applied and was refused. A few months after my 60th birthday I had a major flare of RA. My GP sent me back to him this time he agreed it was. However I was now not eligible for DLA now called PIP. I have now had an amputation of my right leg and had I received the DLA I would have been eligible for a car free of charge and that carries on no matter what age you are. He has been totally different since then probably because he feels guilty about my first visit.

That is awful. I’m glad you finally got diagnosed but it’s a bummer it couldn’t have been a year earlier. Glad you are happy with you Rheumy now though. I wish there was a better way of getting reviews on doctors online. I did look before this most recent Dr. but you would find just as many good reviews for the bad ones. It’s hard to know and when they hold your prescriptions hostage you gotta do what you gotta do. Thanks for your input! jan

As for reviews of doctors online I think part of the problem is that there are quite a lot of people who don’t have any knowledge about health care and so if the doctor is very friendly and has a good bed side manner they will give a good review, not knowing that what they have been told is rubbish. Certainly that’s my experience. There is a lady next door to me who was given medication that interacted with what she was already on. She suffers from dementia so I always tell her to let me know what the doc has given her and look things up for her. She told me that the doc she had seen was brilliant! Just an example had she done a review on line it would have been a good one.

1 Like

If you think it is primary, or genetic, I have an idea that might work for you are right.

The doctor ordered genetic tests are crazy expensive. 2 to 5 thousand dollars to look at a few genes. On the other hand, 23andme looks at thousands of genes for a few hundred dollars. For a while they had removed the medical report that came with the test, and at that time you could pay another service about $25 for a detailed medical analysis of the data created by 23andme. But now I heard that they might be including the medical report with the other results are well - where you are from, etc.

23andme may be a bit less sensitive or specific, but it’s a lot of information for much much less money.

Just an idea. I hope to one day do this for myself.

Rheumatologists are the worst doctors ever. I saw one Rheumy that actually did his job and spent time with me…but the rest are conceited jerks who think they are God. I really believe most doctors go into the field for the money. It used to be the other way around, people went into the medical field to help people but now it’s such a lucrative career…the compassionate people are pushed out by the ones in it for the money. GI doctors too, are similar to Rheumy’s and could care less about their patients with autoimmune disorders…

@ Jan
Did you get your appointment with Dr Kincaid yet? I have an appt in October, and I am not going back…I can’t see the sense in doing the followup.