Rollercoaster Ride with Multiple Providers

I was diagnosed with EM by my hematologist in July. However, due to other symptoms (rash, joint pain, fatigue, swelling, high blood pressure, antiphospholipid antibodies), I’ve also been seeing a rheumatologist in addition to my primary care doctor. Unfortunately, this had lead to a stand still. My PCD and rheumatologist want to see me flare (not just EM but swollen joints) to diagnosis or rule out a rheumatology condition, but I rarely flare in the daytime, which means they may never see it (I have presented numerous pictures, which have caused them both to believe it’s my joints swelling even when I’ve suggested it could be more vascular and related to EM). Furthermore, I cannot tell if my swelling is caused by EM or something else. Then to make matters worse, neither of them (or the hematologist) treat EM.

All of this to say I feel stuck in this terrible position of pain and flares, without any direction forward. My PCD did recently prescribe me gabapentin, which may help somewhat. I was just wondering how you all deal with multiple doctors with multiple opinions, especially when they are uninformed about EM.

I am reaching my breaking point. EM and possibly some other condition are seriously affecting my quality of life, and I would just like to know what is going on and what I can do to feel better. Sorry to complain…it just gets SO frustrating.

Dear Bnashville,

I just wanted to send this reply. I have “my version” of EM and I have a long back story. I haven’t been on the boards for a while but checked in recently and have read some of your posts.

I know the frustration of being in pain and being caught between doctors or being sent from one specialist to the next. My toes went numb almost 4 years ago on 8/21/12 and then the numb turned to burning on toes, soles of feet and up my legs on 7/10/13 I couldn’t get a diagnosis and went from one specialist in NYC to another and none took my insurance. I saw EM on line and thought - no that is too far fetched it can’t be that. But after I sent photos of my feet to a doctor out of town she said she thought it looked like EM and I joined this sight and I got the name of a doctor in NYC a from a dear member who lives in England. So I was diagNosed in June 2014.
I have tried everything that has been offered gabapentin which doesn’t help the pain. But I take it to sleep along with some anti anxiety medication. I tried the lidocaine patch but it didn’t help and it was hard to apply little,strips to,each toe and have them stay on while I tried to walk. I take little pieces of tramadol once in a while she. I can’t take it anymore. I am not sure that it helps but it relaxes me so I don’t think and worry as much.

I just wanted you you to know that you are not alone and that I am sending you strength. I know about being at the end of my rope and that’s a terrible feeling. To be in so much pain and to have doctors arguing about what to do while you are in agony.

I care


Thank you SO much for your reply. I cannot tell you how much it means to know that other people understand the pain and frustration of EM. It makes me sad to know you, like so many of us, suffer, but you and everyone else on here, give me strength when I feel like I can’t deal with this anymore. I so wish that our doctors could understand what EM is like.

Thank you for thinking of me & sending strength my way…I can definitely use it :slight_smile:

I got passed around from GP to podiatrist, to Vascular, and finally to a Neurologist who was able to make the diagnosis. I actually offered to have them stick my feet in a bath of warm water to induce a flare, in order to get a diagnosis. Each of them declined, stating that it would be unethical for them to cause me pain in order to diagnose.

Wow! That’s actually how I was diagnosed, except they stuck my hands in hot water, so I feel you on that one :slight_smile: I was also willing, so I could finally get a diagnosis.

Hi B, I’m a Murfreesboro girl, though living in hot, hot TX. My heart goes out to you. It took me 2 yrs and 6 Drs to get a formal diagnosis. This is a common story for so many of us. On the Erythromelalgia association org web site they have an extensive list of Drs around the world who have knowledge of this mofo disease. I worry at your distress. Just know that YOU ARE NOT ALONE!! Gabapentin did not the ease my burning and made me sooooo drunk. I’m on Lyrica now but don’t really know if it’s helping. If this dose not work, I don’t think my EM doc knows what to do. I read about lidocaine IVs. I asked my Neuro of 25 yrs if his office had done them and they had. So Weds I had my 2nd IV. It’s really the ONLY help I’ve had. This morning 2 days later, I am a normal person! It was suggested the a script of Mexiletine would help extend the cooling effects of the IV. Took it for the 1st time yesterday. A flare could come any minute, but right now I’m going to enjoy right now. Hope you can find help in Music City. Stay COOL. P

Wow! Small world :slight_smile: Thank you for your words of support and for sharing your experiences with different treatments. I cannot tell yet if the gabapetin is working, but I’m hoping it will help. I feel like I was lucky in that I received my diagnosis only 6-months after my flares began. However, I’m stuck with a diagnosis that none of my providers are experienced in treating. My doctor wanted to avoid Lyrica because she said it could make the swelling in my feet/ankles worse, so we went with gapapentin.

I’m so happy to hear the IV Lidocaine treatments are helping you. That is amazing news. Wishing you a cool weekend in Texas :slight_smile:

Hi B, it is now Sunday 4 days since the lidocaine IV and start of Mexiletine. I am doing VERY well. The burning is (almost) gone. There’s just a little electricity. I am most hopeful. Have a cool day in beautiful middle Tennessee. P

To me it sounds auto immune. Lupus can cause EM. I have Lupus, or so some say yes some no, they all agree auto immune but I have been told that some auto immune diseases have not been discovered and many go without a diagnosis. If you have a good rheumo then he should have done the auto immune testing. Any positive ANA? I had something similar that happened to a droopy eye brow. Only happened at end of day. So I told the doctor, what time do you leave? I will come then. Maybe your doctor can add you in a night time appt. Or maybe try a video shot of it all happening and write the time. Did they ever try prednisone on you? I 'm wondering if you felt relief from it? I know the rollercoaster ride. Oh so well. Do not give up. You have to be your own advocate. I learned this. I go in tot he new doctors now and I say exactly this. If you can’t help me, be honest, send me on my way, because I don’t have much time left.

It sounds that way to me too, but my tests have been inconclusive. My first ANA in May was negative but I had another one last week that was positive, although the Dr. said it was “mildly positive” (1:80). Then all my subset tests were negative, so it’s still a waiting game. I’ve shown her tons of pictures…she wants to see it in person.

Thank you for your encouragement. It means a lot. I’m working on being my own advocate for sure :slight_smile:

Hi fellow burners, had a Dna study done. I do have anomalies on th SCN9A strand, but not on SCN10 or SCN11.

Hey Ray, I had genetic testing done and I have primary EM. The result of anomalies on the SCN9A genetic strand. To me it’s so fascinating. Hope you’re being COOL today.

Hi Satochan, how do you go about getting DNA testing? Does insurance cover any of it? Glad to hear you’re getting some relief!

Hi Patti, I used 23andme genetic testing. My dr had had me tested for the MTHFR (no, it’s not what it looks like [tee-hee] it stands for “methylene tetrahydrofolate reductase” mutations which can cause migraines from which I SUFFERED for 30 yrs. I tested positive. She was so sure it would be positive, she gave me a sample of Deplin before leaving the office. Deplin is methylated folate NOT folic acid (which was in EVERY) B complex I had been taking for 30 yrs. Annnnnnyway, I did the complete genetic testing through the 23andme web site. It was $199 and, of course, not covered by insurance.
The results showed that I had many mutations in that gene , SCN9A. I suppose my fellow EMers who burn more each day, have even more anomalies, wouldn’t you think? I am MOSTLY a pm burner. Some days, tho, I wake up burning, but it’s rare. I am in flame right now and feeling very sorry for myself, but I will read some posts by our fellow EMers who have it so much worse and I hope it will sink in that I should be grateful. I hope you have a cool night and a COOLER tomorrow. Patricia aka Satochan

Hi Satochan (AKA Patricia, my name, too!)
Thank you for the info. I had looked at 23andme & thought it would give more info than Do you have to ask them to look for those anomalies & the mutations or do they automatically do that? I think I will get it done. It seems like it would be helpful to know more even though it won’t help the EM. I’m suffering a lot with the Pernio blisters all over my toes & now even moving into the top foot pads. It makes my feet burn worse. I live a delicate balance with temperature & can’t seem to get it right. I am also a pm burner but have had many times when I wake up & I am burning & it will last all day. That’s interesting that your migraines

A low positive would be 1:40, 1:80 is higher so the rheumos I see that is not low positive. I have come to know that every rheumatologist is different. Some go strictly by blood work. Others look at labs but also pay attention to the symptoms. You want a rheumatology that will not be stuck on just labs and dismiss you. You want to seek a doctor that will also take into consideration your symptoms and not everyone with Lupus has a positive ANA. There is a criteria to meet that doesn’t involve labs. As for the I want to see in person, I told my doctor sure, just turn the heat up in the room or I’ll bring my heater and you can watch it happen at my expense ! Urg ! But you can also video tape it and he can see your face on it. Don’t give up looking.

Thanks for the advice. That’s helpful to know about the ANA. Those were the words of my rheumatologist. I see a second rheumy in a few weeks, so maybe he can provide more clarity.

My hematologist diagnosed my EM after seeing pics and then putting my hand under hot water. The rheumatologist has been more hesitant with diagnosing anything else, as she has never seen swelling in person, which I’m not sure is related to EM or not.

Surprisingly, all of my doctors accept the EM; they just don’t know what’s causing the other symptoms (or the EM). Instead, I just keep picking up more doctors lol. I just had QSART testing so I could pick up a neurologist in the near future.

Yeah and like I said it’s trial and error with rheumatologists. I have seen about 10.

The ones you want are the ones that listen and listen to your symptoms. Also my rheumo told me to take pictures of anything as it arises as I can’t keep running to his office. I wish you the best of luck with your new rheumatologist. Make a list of all of your symptoms, past and present. Because sometimes the past symptoms do matter and the most odd symptoms as well. I go by this…there is a reason for everything. Symptoms don’t happen for no reason.

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BTW: I :heart:️ Your screen name. We all need rays of hope, especially with EM :blush:

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Oh yes we sure do! I hope today is a pain free day for you.

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