Introduction

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Hi,

I joined this forum because my sister was diagnosed with erythromelalgia 5 weeks ago.

She is 22 years old and her symptoms started about two months ago. In the beginning she would just complain about a strange feeling in her toes when she was playing table tennis, but it got worse very quickly. She figured out that cooling her feet helped, so we would give her ice bags to help with the pain. However during the night her toes would hurt even more and the ice bags didn’t help enough. Because of that she had to get out of bed and soak her feet in cold water every hour. As you can imagine she was completely exhausted after a few days.

We went to different doctors and specialist to find the cause of the pain. The fifth specialist, her neurologist, took one look at her feet and immediately diagnosed her with erythromelalgia. He admitted her in the hospital to run a lot of tests and started to treat her.

He is convinced that her erythromelalgia was caused by a medicine she has been taking this year for rheumatism, which she was diagnosed with when she was 14. It is called Golimumab (the brand name is Simponi) and she had to inject it once a month. She stopped injecting this medicine and her neurologist says the erythromelalgia will go away once the medicine is out of her system. This can take several months and in the meanwhile she was in a lot of pain, so he also started to give her other medicine that could help against the pain.

The first medicine he gave her was aspirin, which didn’t work. After that she got two different types of lotions. One lotion had some kind of narcotic in it, but she didn’t feel any difference. The other contained peppers and made her feet feel like they were on fire. We ended up soaking her feet in milk to try and neutralize this lotion. She also has gotten a lot of morphine which made her tired and see things that weren’t there, but didn’t help against the pain. Finally she got a pain pump that injects pain medication based on morphine in her spinal cord. In the beginning she didn’t feel any pain anymore. She didn’t even feel her feet and legs properly anymore, so she couldn’t walk.

Now, about three weeks after she got the pain pump, the pain is worsening again. She also had a high fever yesterday and was having some kind of hallucinations. Because of that we are afraid that she has gotten an infection on the catheter. Because it goes into her spinal cord such an infection could turn into meningitis. They did some tests, but decided not to remove the catheter, so I guess she doesn’t have meningitis (yet).

At the moment she is still in the hospital and she will not be home during the holidays, which is very hard for her. Because of that we are trying to cheer her up by getting a lot of Christmas cards for her. I think she would like it, if she also got some cards from people who understand what she is going through.

Also, if you have any tips that could help against the pain, I would be very grateful to hear about them.

Dorien

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Hello Dorien, we are very sorry to hear of your sisters struggles with EM. I too take golimumab (Simponi) for my autoimmune arthritis but have been very fortunate not to have any side effects. Unfortunately EM is often secondary to other conditions, including rheumatic diseases. I wish your sister a speedy recovery.

We are unable to allow posting of personal details on the site so you post has been edited, however, if any of our members wish to send your sister a card they can 'friend' you and you can exchange this information in a private email.

Kindest, Jules

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Hello Dorien

for me there are two things which are working :

topical curcumine (and not turmeric) twice a day and ketamine cream 3 to 5 times a day. With this I don't put ice on my feet anymore.

I also take 1 g of oral curcumine per day against the inflammation.

Best regards,

Carine

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Hi Carine,

Thank you for your reply.

My sister is also using a lotion with ketamine. At the moment she thinks that it's not helping, but she has only been using it for a couple of days.

How long did it take before it worked for you?

Dorien

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Almost 2 weeks !! 4 or 5 time per day.

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Unfortunately what works for some, does not work for others. So it really is trial and error. I personally only find pain relief with gabapentin wich tales care of the nerve pain. I used to ice my feet as well but soon learned (from people on this group) that it can cause worse burning when the area starts to re warm. As well as cause really extreem blistering. Mine used to only flare up in the spring/summer but I’m just getting through my first winter flare. The winter one seems to be easier to manage so far and I think it’s because I’m able to regulate temperature better. Hope your sister finds some relief soon for not only this condition bit everything else going on for her

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Try lanocaine cream and Camille Backman's french vanilla cream lotion with a 50/50 mix. Th lanocaine will help with the burningn sensation, but it doesn't really replace the need to chill the feet with cold fans, and AC or water or ice packs. The lanocaine may help some. The Camille backman's cream can help in the mix because it will moisturize the feet. Some people like my mom can't have creams that have agents that will "warm up your feet' to open the pores. This is what some of these creams are doing. My mom's condition cannot stand a greasy cream that may form a kind of heat shield and not allow air to chill her feet as well. For this reason my mom's feet will not respond well to many creams including "BurnJel" which has anti burning agents in it, but the cream will coat her feet and make them heat up worse and Hawaiin Tropic Cool Aloe Ice, which has a small amount of Licocaine in it, can't help my mom either. This because these to creams seem to coat and hold in to much heat, causing worse flaring.

Zinc oitment will help treat a crack on her skin of a part of her heel and she may state that helps, but we can't coat her entire foot with it because it holds in heat. There is a moiturizing gel that helps my mom's feet from Avon which also doesn't seem to hold in heat, but it's more for dry skin and seems to offer no pain relief. These creams alone and most medicines alone will not be sufficient for my mom's major flares which are frequent and major. We are constantly fighting her flares with environmental chilling. Pain pills alone and creams are not enough.

Some mixtures of medication may push the symptoms into a different direction or even resolve the EM case. It seems in our case, a Flexerol muscle relaxer pill will sometimes push my mom's version of EM into a kind of possible cold recovery kind of numb frozen mode. But this is usually a temporary thing and doesn't last. It is fairly rare and may be a kind of damage to another part of her nerveous system or even causing another side effect like Serotonin syndrome with a temporary change. I doubt Serotonin syndrome like symptoms are changing my mom's symptoms, but it could be possible. So the "cure" or temporary cure or new direction may not be any kind of real relief so far in my mom's case.

My mom's kind of EM didn't respond to many widely reported therapies. I'm guessing and just guessing for now that some common therapies are geared more toward cold neuropathy with occasional EM flaring and these might be more widespread as EM cases vs a more "only hot flare" EM type of the disease, but this is just a REALLY basic guess on my part and I don't have sufficient data to prove it.

Capasin (spelling?) creams with that substance are used to open the pores to allow the other medications to go to work. Unfortunately they will often cause a heating up of the foot and make a flare worse, so those are avoided by some who suffer from EM.

Summary three creams that worked for my mom, who responded to many "heat retention creams" poorly are:

Lanacaine, Camille Backman's french vanilla, and Avon Moisture therapy. Zinc oitment may help in spots but can't be used all over her feet coating them. She has also had some relief from side effects of having her feet in cold water baths by adding either Epson salts to the water bath or at times Hydrogen peroxide to help clear up skin issues or deal with possible things that might crop up with soaking the feet to much.

My mom's flares have been bad enough to cause dry skin to crack open and split and cause bleeding from the swelling, which is an added torture to her severe flares. Fortunately she has feet that heal quickly and has avoided infections from any bleeding from a severe flare or injury to her foot. At times she had her feet cut by toenails from the other foot as well perhaps from movement that would result. So my mom has been lucky regarding infections and we keep a pretty close watch on her feet. Antibiotic cream might also be used for a crack. You don't necessarily want to coat every part of the foot and often may want to avoid putting creams on toenails.

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