Doc conversation help? New here

Welcome New Member Introductions
1

Hi everyone, I just recently started having EM symptoms in Dec 2019 and I suspect that it’s possibly from nerve damage from carpal tunnel. I’m a 34 year old female and have had carpal tunnel in my right wrist for about 2 years due to working on the computer all day. I am also currently dealing with a probable pinched nerve in my right side of neck/shoulder causing pain there. Just for history, for the carpal tunnel I had a negative EMG in Sept 2019 (but my symptoms of pain, tingling and numbness weren’t very bad then), symptoms got worse in Nov 2019 probably from working out, physical therapy in Dec 2019, and a cortisone shot in Jan 2020. The physical therapy didn’t help very much and the cortisone shot helped just with the pain directly in my wrist. I started having the neck and shoulder pain in Jan 2020.

Ok now back to EM and when that started. As I noted, my carpal tunnel symptoms got worse in November, probably from me working out too hard and that is around when my right hand started getting swollen, hot, throbbing and visibly red whenever I would work out, after a hot shower, after having a drink, being in a warm bed, anytime my body temp is elevated. It was uncomfortable at first but now it is painful and feels like my hands (now both as of around January) are burning, again only after those situations I mentioned and it usually lasts for a few hours. Sometimes my right foot
gets hot too, up to my right knee. My physical therapist in Dec just thought it was from nerve irritation (I guess it probably is?) and told me to do contrast baths (dip my hand in ice and then warm water, back and forth for 10 mins) to relieve the swelling. I think I may have actually made it worse by doing that.

I brought this up with my neurologist a few weeks ago but he was more concerned about relieving my neck pain. My cervical MRI was normal and now I’m going to virtual physical therapy for still a possible pinched nerve in my neck but I asked for another EMG to see if I have nerve damage that would be causing my possible EM issue. He said he would order another EMG for me but they of course aren’t doing non-emergency tests like EMGs right now so I can’t have that done currently.

I have an over the phone appt with my PCP tomorrow (I initally went to her for my neck/shoulder pain, she referred me to the neurologist) and want to bring up the possibility of EM but want to know how others have approached this. She seems to be more receptive and understanding than my neurologist. Even though we’re in this pandemic situation I want to bring it up to find ways to help my symptoms without having an EMG done to confirm damage. I am not sure that she could even diagnose it at this point without seeing me, so I’m stuck but again I need help with my symptoms.

Thoughts? Thanks in advance for any help!

1 Like
2

I forgot to mention that the docs have run arthritis and autoimmune blood tests on me and all have come back negative or normal. They tested RF, sedimentation rate, ANA, CCP antibodies, ultra sensitive CRP, and TSH.

3

Erythromelalgia is erythema (redness, warmth) that is elicited by heat and alleviated by cooling. If you put your erythematous hand in an ice bath, does it make the erythema (and accompanying pain) go away after a few minutes? If your symptoms are consistent with that pattern, I don’t know of any other condition besides erythromelalgia it could be.

You’re smart to have already noticed the pattern causing your symptoms and found your way here. Most doctors are unfamiliar with erythromelalgia. By that, I mean, most have never heard of it. (If its prevalence is 1 in 100,000 people, as one study suggested, then only 3300 people in the United States have it.) Because of that, doctors will be dismissive of its suggestion. They’ll find it unlikely you are correct when you arrive at your appointment and tell them you have a rare disease they’ve never heard of before. What you need to do is make your case. Show them pictures. Elicit the symptoms in front of them, if possible. Seeing is believing. If they can see something is wrong, they’ll find you more credible. With it established something is wrong, you push them to either prove it is something else or treat it as erythromelalgia. Your current doctors may say they are unable to treat you if they agree with the diagnosis of erythromelalgia. It’s likely you’ll have to look elsewhere for treatment, even if you convince your doctor you do have erythromelagia. They may feel it is outside their expertise.

Good luck!

1 Like
4

It took 4 years for my son to be diagnosed, his symptoms started when he was 11 1/2 or 12 years old. Every specialty said they thought it was renauds disease ( which is completely opposite of EM. It started just in his toes but traveled up to currently above his knees ( he is 20 year old now) his arms are involved now( hands up to wrist) and now his faces is involved as well (nose and ears) last speciality was derm they diagnosed him with in 5 minutes when he showed them how fast and how far it was involved with his lower extremities. They ordered genetic testing and was found to have a defect on SNC 10. Can be SNC 9 as well ( 10 is more rare than 9). We even went to Mayo Clinic the the only doctor that knows everything in the world about EM. Where we were told yes he has it and there is no known current therapies only for symptom control. I agree with the statement that you have to show them in person but it still may take a long time before you get a diagnosis. It is very frustrating to get answers so try not to let it get to you. You are not crazy or trying to make up something to get attention ( that was told me about my son even with physical signs and to take him to therapy) so don’t give up and hopefully you will get your answers soon

2 Likes
5

Thank you so much for your input. I have been paying close attention to my symptoms ever since I started getting swollen fingers / hot red hands and thinking it was arthritis at first. Finally it started progressing to the point where I was getting the really hot burning sensation and EM was the first thing that came up in my Google search. Yes, if I put my hands into cool water they do feel much better. I just got out of a lukewarm shower and put my hands in cool water for 5 minutes after getting out and they feel good right now.

I had my virtual doctor appointment today and feel like I am very lucky. I took your advice and told the doctor that I had pictures ready to show her but she didn’t ask for them. The doctor knew exactly what condition I was talking about and is sending in a prescription for a lidocaine cream and told me to take aspirin or Motrin, and to do things that I’ve already been doing like taking cooler showers and doing lighter exercise. She is also ordering blood work to see if I have the condition. She only mentioned CBC, I’m not sure what else she’s putting into the order. I also already have a prescription of gabapentin (100mg) that she had prescribed to me for my neck and shoulder pain which is possibly a pinched nerve. I have not taken it though because she had wanted me to try the muscle relaxer first for that and it worked. She wants me to start taking it at night now to see if it helps the possible EM, but after reading about people’s side effects here I’m not sure that I want to. I understand that the 100 mg is a low dose though.

I asked her if she thinks this is secondary to the carpal tunnel pain I’ve been having, and she actually thinks that the carpal tunnel pain might have been this condition all along. That would explain to me why the cortisone shot, physical therapy, wrist bracing, and other things that I’ve tried to calm the carpal tunnel down have not been working. My wrist had always felt like it was emanating heat but the hand doctor always thought it was just from the swelling. I just thought I was broken lol.

anyway. I’m not trying to get my hopes up about anything and know that this is something challenging to deal with if it is what I have. I will make sure to keep everybody updated and will probably be asking for advice soon depending on how my tests come back.

6

Sounds like you had a really successful appointment and have a knowledge doctor! That is great.

Unfortunately, it does sound like you may have erythromelalgia. It’s better to know what is wrong though, right? That is the first step towards treatment. While erythromelalgia can be difficult to treat, it’s not impossible.

A lidocaine cream is a good first option. Lidocaine is a sodium channel blocker. I take what is considered the oral analogue of lidocaine (mexiletine). It has been very successful for me.

Good luck! Let us know how things go in the days to come.

1 Like
7

I was wondering what dose of mexiletine you are on because I had seen it was used very successfully in tests done. I talked to a neurologist about getting it since many things so far had not worked. He prescribed Mexiletine at low dose but it took weeks to get approved through Medicare then my pharmacy said it was not approved. I went to another pharmacy after getting fed up with the other. That pharmacist warned me that it is generally used only for heart patients and only in the hospital under supervision. Scared me off so I didn’t want to try it until I know more with a doctor’s input. I’ll see the neurologist tomorrow assuming that the COVID-19 hasn’t upset my appointment in some way. Mexiletine is very expensive too. The pharmacist said I could try a 7-day dosage first to see how it affects me. Have you had any side effects? Did you start on low dosage? How long did it take to see improvement? Any details appreciated!

1 Like
8

I wrote a new post yesterday about my mexiletine dosing and it answers a lot of your questions. That post can be found here: MEXILETINE reduction.

I titrated up my initial mexiletine dosing by taking a single 150 mg pill daily the first week, then two 150mg pills daily the next week, followed by three 150mg pills daily thereafter. However, I found most benefit came from the single daily 150 mg dose. Improvement was immediate and dramatic from the single daily dose. Prior to mexiletine therapy I was flaring multiple times a day, every day. I experienced symptoms every 2-4 hours. That flaring cycle stopped 36 hours after the initial dose. I have experienced only a handful of minor flares per year since and those that do occur are both less painful and more easily mitigated. I do still have occasional paresthesia at night (pins and needles feeling) if I get too hot while sleeping under bedding. That can be eliminated simply by removing the covering.

9

I have found the only medication that has helped me is mexiletine. It has been used for diabetic nerve pain when other meds did not work, not just heart issues (found an article on-line about it). No other doctor even mentioned it. My pain management doctor at UCSD started me on it (even Mayo Clinic Minnesota didn’t even mention it to me). I currently take 300 mg 3 x day. I have constant burning and swelling in one foot and also have long & short fiber neuropathy in both feet. I worked my way up slowly (can’t remember exact doses). This medication caused extreme nausea as I increased the dose. I hung on for a couple of months and it is much better, although I can have bad heart burn (more like throat burn), and Tums normally help. I tried every other medication normally used for EM and nothing else worked. I don’t think you would know in 7 days if it would work for you.

10

Just saw “my” neurologist again yesterday and he thinks, after hearing about the heart thing possibility, that we’d better wait. He wants me to see a rheumatologist since I also have Lupus. I’ll go on with yet another specialist before trying another medicine. I wouldn’t have put up with what you did on a medicine. But then, my EM isn’t that difficult to tolerate. Using a fan helps me get along. Wish you the best!

11

Wow! Kudos to you. I am pretty sure I couldn’t tolerate that much. How long have you been taking that much?

I didn’t find very much change between 150mg, 300mg, and 450mg a day. My doctor started me on 150mg for the first week. Because that was wildly successful, I was hopeful the subsequent increases would eliminate every last vestige. That didn’t happen. (While I don’t have random flaring anymore, I do still have occasional paresthesia and can elicit erythema in extreme circumstances). It’s possible the increases weren’t even necessary at all for me. I would estimate I received more than 90% of the overall benefit achieved from mexiletine at the single 150mg daily dose. Any subsequent gains from increasing the daily dose to 300 and 450mg were minor and could have been a placebo effect. After the dramatic, near miraculous initial gains, I expected the subsequent increases would make it even better.

12

I think I started taking the mexiletine last August. My GP worked with pain management doctor as I needed EKG’s at first. This medication just helps my flares. I am at the highest dose I can be. My one side effect is static in my ears (not quite ringing).
I have deep vain insufficiency in my calf’s. So I’m supposed to wear compression socks all the time, which aggravates the EM. I’m supposed to walk and elevate my legs above my heart every 2-3 hours. So, my feet are so red all the time and flare easily. Must keep the temp in my house as cool as possible.

13

Thanks for all the input here, it helps to know what others have dealt with and meds they are taking. My bloodwork came back and my platelets, etc. are normal. I do have a slightly low WBC count, just below ‘normal’ and a slightly high monocytes % but the doc isn’t concerned and said we can run bloodwork again later.

I have been managing ok by avoiding intense exercise, hot showers and taking motrin or aspirin. I think she forgot about getting the lidocaine cream approved and I forgot to ask. I don’t think I’ll reach out unless my issue gets worse.

14

I’m always thinking about how to communicate with doctors + how to distill the info that they need, while being my best advocate. What I discovered (for myself, at least):

-for some doctors, there is benefit in bringing someone else you know with you. Who can validate the disability of symptoms and the frequency of symptoms (people can see a pic and think, “well maybe that was a one-off…”) If you are not a white male, bringing in a white male can help.

-If they ask for job at any point, embellish if necessary. Eg, instead of saying grad student I now say “NIH research fellow at Stanford” or whatever. One doc asked me this, and it is now somehow in my medical record, and noticed by other docs.

-Pics - I have a poster now of my night flares specifically (this is my most severe symptom). 4 of “untreated flares” and my night flares after (each of): clonidine, beta blocker, calcium channel blocker, viagra. A few doctors scrutinized the one I had on nadolol, as if it didn’t really compute for them before that flares can be unchanged despite a steady state vasoconstrictive medication (even though I had told them this prior). I also have pics of any other med that made me sign. worse or sign. better.

-Instead of saying your thoughts and opinion, it is better if possible to phrase it like “That’s interesting, Dr. X was confident that sympathetic blockade would not work, why do you think it would work?” I think when I started doing this, some docs recognized the value in treating my case, as they indirectly had access to what world-class doctors thought about pathophysiology, treatment algorithms, etc. So they became more interested, and eventually even asked things like: “…I’d be curious what Dr. X thought about hormonal influence, if you by chance ever asked him that?” I am personally polyamorous with doctors - I keep a few “main ones” but they know I’m always looking for second opinions, etc. :slight_smile:

-Start recording details about how long exactly you used a drug, what dose, what effect it had. Saying / showing these details to doctors seem “to show you are serious about treatment”.

-Be aware that docs can write “patient is anxious / depressed / flat affect” in medical record.

I’ll get off my soapbox now :slight_smile:

2 Likes
15

Thank you! Thankfully my doc knew what it was and seemed understanding. My platelet count came back normal so I’m not sure what to do at this point. What type of EM would this point to then? Maybe as a result of my longstanding carpal tunnel on that side? I can always all my doc back too but curious to hear thoughts. Remember my autoimmune, arthritis bloodwork all came back negative. I am getting a new EMG done in early May if testing is being done again by then (thanks coronavirus).

I have a pinched nerve in my neck and am doing virtual physical therapy for it now which has reduced my neck/shoulder pain substantially. However, the EM in my hands and right foot continues. Hands are almost constantly swollen but the redness, heat and burning has went down since I am sometimes skipping showers or taking warm, not hot ones.

Does anyone else feel heat in their inner part of the elbow or upper arm from this too? It’s really hard for me to differentiate from pinched nerve radiating pain and EM pain. My arm doesn’t look to be red but it’s that same kind of hot aching discomfort. It feels hot to the touch too. How the heck am I supposed to soak my whole arm in cool water :joy:

Kind of the same question for the lower extremities… I get achiness from my right foot into the back of my knee. Both of my feet got hot and red after I take a walk. The back of the right knee pain happens mostly after standing at my desk for a while or if I’m lying down and have my legs crossed with the pressure on that side. There’s no other reason for this since I’m not working out besides light walking due to this pinched nerve.

16

Standing_cat, your advice is awesome, and great for any patient, not just EM sufferers.