Hi friends!
curious, on average, how many steps are you able to get in a day, or how much time do you spend on your feet? Also, how does everyone manage to work out with erythromelalgia? I’m really in need of some tips and ideas for staying active while managing symptoms.
I’d love to hear what works for you!
I posted 2 weeks ago about my 15 year old daughter admitted to the hospital with Erythromelalgia. She does not have any underlying conditions so she suffered from primary Erthromelalgia. We tried aggressive treatment to include a lidocaine infusion which was unsuccessful while using anti anxiety medications and narcotics to control her pain. Her medical team has been increasing Lyrica and oxycarbinze dosages in the meantime. Boston Children's recommended to try Journavx (suzetrigine). The pharmacist at the Hospital denied it as it has not been FDA approved for pediatrics.
Her local dermatologist had some samples and we obtained some from him. Yesterday at 4:22 PM she took her first dose and was pain free within 40 minutes. What a relief that we would find something to remove her pain....and its NON-OPIOID. almost 24 hours now and still pain free just some tingling her in hands.
Battle not over....this medication is not approved for children and its very expensive. Her doctor has already reached out for more samples and has started the compassionate care route to hopefully get us as much supply as she will need.
What a nightmare last 2 weeks and we see some light at the end of the tunnel. I wish everyone suffering with this the best and hopefully you find some relief like my daughter.
I came across a study that may be useful for those suffering erythomyalgia. The paper is on the use of 20% mepyramine cream (technically an antihistamine but it has sodium channel blocking properties) on patients whose causes were either NaV1.7 mutations or unknown. All patients had severe, poorly controlled erythomyalgia despite being on a number of medications. It's only 8 patients but the results were promising.
The second link is a data table showing the improvement in pain and shortened duration of erythomyalgia episodes each patient experienced. Link 3 is to pictures showing the visual difference. It includes one young girl whose family applied the cream to one limb and not the other in order to show the stark difference mepyramine had on her. Prior to the cream, her pain was 7 out of 10 despite being on multiple medications like morphine, fentanyl, and sodium channel blockers like mexiletine. She responded particularly well and went down to a 1 out of 10. Link 4 is to a list of all the medications the patients were on prior to trying the cream.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12740923/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12740923/table/tab3/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12740923/figure/fig7/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12740923/table/tab4/
20% mepyramine is a lot higher than the 2% found in normal commercial formulations . The researchers said doses tried before the study of around 2-5% were ineffective. The unconventionally high dose means it's something a doctor would have to order made through a compounding pharmacy. If any of your doctors believe this is worthwhile for you to try, I hope it works out for you. The lack of controls is regrettable, but given the many medications tried on these patients before without success and the ability to visually confirm the difference the cream had, it is unlikely the findings can be attributed to placebo.
Some selective quotes:
"In this study, we demonstrate that mepyramine, a compound previously shown to alleviate pain in animal models, effectively targets hNav1.7 channels carrying PEM-associated gain-of-function mutations, providing substantial pain relief in PEM patients. Using voltage-clamp recordings in human embryonic kidney (HEK) 293 cells, we demonstrated that mepyramine inhibits hNav1.7 channels carrying three distinct PEM mutations, I848T, L858F, and L1267V, which differentially affect the gating properties of hNav1.7. Importantly, mepyramine’s efficacy was consistent regardless of how these mutations altered channel activation or inactivation properties. To evaluate its clinical potential, we administered a high-dose topical formulation of mepyramine to a group of PEM patients suffering from severe pain that was unresponsive to conventional analgesics, including cases with identified SCN9A mutations. This treatment rapidly and durably reduced burning pain and erythema, providing meaningful relief for patients who had not responded to, or could not tolerate, previous therapies. These results suggest that mepyramine can inhibit PEM-associated Nav1.7 channel mutants and may offer a new therapeutic approach for PEM patients."
"The selection of the 20% concentration was based on preliminary data indicating that lower concentrations (2–5%) were ineffective and failed to provide adequate analgesia in patients with PEM"
"The patient reported a rapid decrease in NPRS score from 7/10 at baseline to 1/10, along with the complete disappearance of erythema and redness following the topical application of mepyramine (Figures 6, 7B,C and Table 3). The MCID indicated much relief, with an 85% reduction in pain. Noticeable relief was observed within 5–10 min of applying and rubbing the mepyramine cream and lasted for at least 3–4 h. The frequency of the attacks was also drastically reduced, and when they did occur, the duration was shortened to 10 min after mepyramine treatment compared to 30 min at baseline. No school absenteeism was observed during treatment, and the 9-year-old girl was able to resume cross-country activities."
I’m currently a 17-year-old male dealing with two major chronic illnesses: lupus and Erythromelalgia. I honestly believe that Erythromelalgia (EM) fucking sucks there isn’t anything good about it. I’m struggling right now because it feels like people think I can do so much more than I actually can, and they get angry or annoyed because they don’t believe this is my limit. I think they’re still used to the old me, but it hurts, man, because they have these expectations and hopes for me.
My mom wants me to be successful and have a good life, but I sadly don’t think the “good life” part is possible anymore with the way things are going. I don’t understand why they can’t see that I just can’t do as much or basically anything anymore without triggering symptoms after a bit. My grandma seems to think I can do way more than I can. I’ll admit I can sometimes, but there are major consequences when I do, like extreme fatigue for the next few days or just constant soreness.
I also have memory issues that confuse me because I can remember some things well, but I forget almost everything else. I’m currently starting a small computer business to resell used PCs for good prices because I love PCs, and it’s something I’m still somewhat able to do. But even then, I cleaned a PC for about four hours and I’ve been completely beat for like two days afterward.
Is there any way I can show them how I feel? I explain it to them, but they always say they want better for me and are just pushing me. I know they mean well, but it hurts. I just wish they understood. My grandma says if she had what I have, she would “just work,” but… do you understand the pain that EM carries? It hurts so bad. I feel like they underestimate EM and how truly debilitating it is.
Are there any solutions y’all recommend or am i fucked
Anyone here just randomly got erythomelgia and it randomly went away? Or any remission stories? I need hope 😭😭
I’m just curious on what others think caused their em? was it small fiber neuropathy related because I started both symptoms the sfn and erytho at the same time. Was it autoimmune? diabetes or blood sugar related? 😭
Currently very angry and upset. I thought I got rid of this thing once and for all. Spent the whole year being 25 without a flare up. I did so much. Started on a tennis team. Walked for miles. Traveled to Africa.
9 days after my birthday where I was on Selexid for a stupid UTI I can’t walk 3 minutes without my feet burning and my hands are flaring so easily. I feel so utterly defeated and heartbroken. I’m getting married next year for God’s sake
My EM of the hands and feet appeared after a failed knee surgery. I was diagnosed with CRPS in my knee and I also developed EM in my hands and feet shortly after the surgery. Throughout the years I have noticed that enough people to catch my attention in EM groups said they had CRPS and also EM in a different area of the body other than the limb they had CRPS ( I made this distinction because CRPS can have similar features to EM) or developed EM around the same time as the CRPS.
I tried asking AI some questions about it and the only answer it had was that there is a similar small nerve dysfunction in both disorders. However, I believe there is an autoimmune inflammatory and/or neuroinflammatory cause/connection.
Thoughts? Experiences?