What are /r/Erythromelalgia's favorite Products & Services?

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I'm sorry they're not working for you. I ended up in the ER twice this week. Have you considered that? At least for temporary pain management? Or search for socks similar to this.

I wish I could help more! Maybe someone else can step in and be more of help to you. I had a steroid (medrol) shot in my bum to quell the swelling of my feet (I'd post but it's totally NSFW!)

I'm going to a pain management clinic (MedStar) next week. I'm skeptical. However, in a few weeks I'm at Johns Hopkins totally and I'm hoping they can provide relief for me.

Have hope for the Cleveland Clinic. Again, I hope someone can jump in and help.

Currently my EM isn't that bad, but about a month or 2 ago, I couldn't stand up, sit down or lay under anything, so I could basically only lay down (without a blanket on top of me) without having any pain...

Do you know the cause of your EM? Are you getting any treatment/medication?

The only thing I can advice for now is to try to find a treatment and laying down as much as possible. Maybe sitting on something cold and having your legs/feet elevated might work (that's what I did). There are cold packs that aren't ice-cold, and they stay pretty cold (even if you sit on it) (like this one)

My midodrine cream is my last resort, when all else has failed to prevent or end a flare. That is simply because it is so expensive. For me it works. So I only use it when having a flare and I cannot get it under control by other means.

In that very small trial they only tested it on 12 patients. 10 had significant relief within minutes. They didn't go into much detail about the other 2, but presume it does not work for everyone.

Also I had to find a compounding pharmacy that could make order the medication to make it. The local one had to research it a bit to ensure they could get the right stuff. This is probably not a formulation that a typical compounding pharmacy has every prepared before as it border on experimental.

And to get the doctor to write the prescription for it I had to send her a copy of that research letter. My pain medicine doctor looked over the article and decided it wasn't likely to harm and very well might help so she ordered it.

I use it sparingly, a drop about the size of the toothpaste that I brush my teeth with each morning.

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The Aloe Vera with lidocaine is, IIRC, only 0.5% lidocaine. I also have a 4% lidocaine cream (no aloe) from Walmart that packs a bit more punch. But either is relatively short acting. I use this only occasionally.

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For overnights I take a lidocaine pain relief patch (over the counter is 4% and comparatively cheap. Prescription is 5% and more expensive), cut it in half, and stick half to the sole of each foot. That seems to help me sleep through the night more often.

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Fortunately a prescription medicine helps me a lot. I take mexiletine, a sodium channel blocker. YMMV

If you've had some luck with lidocaine then I suggest some lidocaine patches. Be sure it isn't the menthol stuff. That can slowly drip some lidocaine into your feet and help you sleep if flares are bad. Cut the patch in half and apply each half to the sole of a foot.

For OTC patches 4% is the maximum strength. About $1 per patch is a good price. Sometime you can beat that like with the one I linked above. Try it with just one box from your local store and place a bigger order online if it works for you.

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My other trick is a cooling pad. Ice is too cold and melts too quickly anyway. I found Feet Coolers made by some lady in Michigan. Read through the site. It does work to provide a cool pad that stays cool all night, a couple days actually, and can be reused time and time again.

Basically it is a chemical (possibly like what is in baby diapers?) that is sewn into pockets of fabric in a quilted pattern. Soak it in water and the chemical absorbs HUGE amounts of water compared to its own weight. Wring it out so it isn't dripping wet. Then as it dries over 3-4 days (yes, days not hours) the evaporative cooling keeps it cool to the touch but never so cold as to damage skin. Honestly, it is an incredibly amazing idea that I haven't seen elsewhere.

Sure thing! I’m always happy to give my two cents on EM and Autoimmune health…dealing with this for 4 years now. It’s definitely devastating to all of us and we need some sort of relief strategies and community assist.

We bought the Coleman Saluspa from Amazon for $500. It’s been the BEST…sits at 104 degrees F through negative wind chills. Comfortable and soft on the tush.

Can be put up and dismantled in 15 min, so once warmer weather comes you can put it in a large plastic tub... I’m 5’7” and sitting down it comes up to my clavicle when full… Hope this helps y’all!!

Coleman SaluSpa Inflatable Hot Tub | Portable Hot Tub W/ Heated Water System & Bubble Jets | Fits up to 6 People https://www.amazon.com/dp/B00NB3P98G/ref=cm_sw_r_cp_api_i_N840MZA456FH2HC1DJFA?_encoding=UTF8&psc=1

I am so sorry to hear how much it is causing you pain and impacting you life! In your situation I would definitely push to try medication and advocate for yourself! Here is the one I bought if you aren’t in Canada you can try searching up cold therapy socks online or on your amazon NatraCure Cold Therapy Socks - Reusable Gel Ice Frozen Slippers for Feet, Heels, Swelling, Edema, Arch, Chemotherapy, Arthritis, Neuropathy, Plantar Fasciitis, Post Partum Foot, Size: Small/Medium https://www.amazon.ca/dp/B003L4WOKG/ref=cm_sw_r_cp_api_glt_i_QXRXC89S39WAG0XYZDNS?_encoding=UTF8&psc=1

Friendly aside....

With such high aspirin amounts on a long term basis you could have a hard time clotting if you cut yourself. I know from a horrible personal experience. Let's just say guys who take that much aspiring should be careful when scratching their junk.

So just in case get an emergency clotting first aid treatment to keep handy just in case.

I hope the aspirin helps!

Cooling mats with water inside like this one: https://www.amazon.com/dp/B075GVKYGP/ref=cm_sw_r_cp_apa_fabc_U9oYFbTMXRC43

I also take two pills of amitriptyline an hour or two before I plan to get ready for bed, they not only help reduce the severity of my flares, they make me sleepy enough to sleep through the worst parts of the night.