Hi everyone, I’m Hewie from Boston, MA. I’m 35 and about 7 years ago, I had what I would describe as my first flare up. I thought my shoes were too small. Then it kept happening. I went from doctor to doctor, and was told this was a tendon injury. Last fall, I became a bit more aggressive about finding out what was wrong with me. I went to a sports doc and after a dozen blood tests, an EMG, several X-rays, and a MRI, the doc found nothing. On a whim, she passed along some info about EM and everything fell into place. This was about as recent as February.
My main triggers seem to be dehydration, exercise, and heat. Suffice it to say, I hate the summer. When I have a flare up, it is typically one of my feet. When it is a really bad flare up, I can’t even so much as put a sock on, let alone put pressure on my foot. This result in me being functionally worthless for at least 5 days. Thankfully I have a low pressure job and it doesn’t matter if I am there or alive or whatever.
My treatment as of this time is a 1 gabapentin and a baby aspirin, daily. I keep a bottle of PediaLyte handy if I ever get behind on my hydration. When a flare up begins, I wrap an cold compress around my foot. If a flare up reaches the point where I cannot even touch the skin, I fill up my bathtub with water and ice, then I soak the foot for about 45 minutes at a time. I end up watching a lot of TV this way. I’ve managed to reduce these flare ups from a week of intense pain to just 3 days of hell.
I’m looking forward to trading treatment tips and reading about how awful this will be in the future.
Hi Hewie
You are in the right place for answers. I have found valuable information from all these members by reading as many topics as I can. I myself can’t offer much on treatment as I am only on Gabapentin at the moment. Look for a Dr. That knows how to treat EM and you can come up with a medication plan that works for you. Last year I realized I had to go to a wide shoe to accomodate the flares while at work. Changing socks at work when my feet start to get overly hot helps some as well. From what I have read soaking in cold water is a no no as it can injure the skin. It seems EM is different for each person so for you hopefully it will not progress. I understand how you hate summer now. It used to be my favorite time of year. Research on this site and I’m sure others can offer additional help. Good luck and be well.
Hi Hewie
Agree not to overdo the cooling, especially extreme cooling. I find maintaining relatively constant temperature is helpful. Bobs protocol of hot bath feet soaks is often beneficial. Look that up on this forum.
A general comment is that medication doses maybe sub therapeutic ie too low to work, but this requires close supervision from your doctor to monitor tolerability and potential benefit before giving it away and trialling another option.
Best!
Yeah as the others have said you’re gonna wanna stop with the cooling unfortunately just makes it worse in the long run, I find elevating my feet and distracting myself with a good book till they cool down on their own helps. It’s awesome you have such a low pressure job!
I work in a pharmacy although I am not a pharmacist (no doubt after 15 years I know just enough to be dangerous) but I do agree with Stan, you may be sub-therapeutic on gabapentin.
Gapbapentin isn’t extended release so once a day dosing isn’t standard. The only once a day dosing is for Restless Legs Syndrome with the dose being at night since RLS happens at night. Typical dosing for gabapentin is at least twice a day, often three times.
The useful strength of gabapentin varies wildly. I, personally, get 98% pain control and about 75% migraine assistance (two different conditions I’m treating) with only 100mg twice a day. You can safely go up to 1800mg a day for pain, 3600mg for seizure treatments. It’s all about finding your personal balance with this med. At one point I was doing 200mg twice a day but was able to back off that dose with no loss of pain control.
I suggest speaking to your doctor about your dose. There are many options out there. For example, if you take 200mg a day you may want to split it into 100mg twice a day. This will change how much medication is available in your system to the positive. Right now, by taking it once a day you’re not keeping a steady amount in your system because it’s not extended release. Or, you may want to double your daily dose, taking one dose in the morning and another at night. You need to speak to both your doctor and your pharmacist for guidance but I definitely think you need to discuss it.
Thanks everyone! I’m already learning a lot. I’ll be speaking to my PCP soon and I plan on getting a referral to one of the doctor’s listed on the Erythromelalgia Association website. In the meantime, I’ll scroll through the topics and learn what I can.
just makes it worse in the long run, I find elevating my feet and distracting myself with a good book till they cool down on their own helps. It’s awesome you have such a low pressure job!