So as I sit in my air conditioning, watching my husband and son work outside on an absolutely gorgeous day, I am having a bit of a pity party for myself. I am also having the worst flare I have ever had. Tuesday my left foot was swollen a bit and hot (not unusually, I flare at least 18 hours of every day). On Wednesday it was worse and the hot weather hadn’t even hit yet. Well it was bad on Thursday, I had a closing (I’m a Mortgage Originator) in a hot closed room with 5 other people and needless to say, by the time I got back to my office where I can somewhat control the environment, my foot was bad, really bad. I was a little better when I left work but not for long because it was hot out (by MI standards). When I got home I cold soaked it for a good 1/2 hour and when I pulled it out of the cold water, within a minute, it was hot again and the skin has been super painful. I was going to take Friday off and leave it up but that didn’t happen. By Friday night I was in serious pain, even with my Cymbalta, Lyrica, Tylenol 3s & Ketamine/Amitriptyline Cream. This morning I notice the upper top of my foot and ankle are broken out in medium to small water blisters. I just can’t get the temp down on this foot for nothing. The swelling is slightly better since I’ve had it up and not doing anything all night and day.
Tomorrow we are supposed to go to my sisters for an outdoor (she has a really small house) family get together. We have several family members in town for the holiday weekend. It’s supposed to be 90 tomorrow. I just don’t know how I can possibly go without causing more damage and pain to my foot. I’ve been dreading call my mom to back out. They won’t understand. They will just say bring your thing so you can soak your feet but I would have to have my feet in the water the entire time I’m there and it’s still going to do more damage. I have to miss family vacation this year too since it will be in Texas in August (combining family vacation with family wedding). I know you can all relate, it’s like watching your life from an air conditioned room. Even then it’s a pretty shitty life too when you entire day revolves around trying to make your feet happy. I have some issues with hands and face but I can’t imagine those of you that deal with it on other parts of your body.
So enough of the pity party. Earlier today I watched a special on CBD oil. Has anyone tried it? With hemp or with Marijuana? With hemp is legal in all 50 states because the almost non-existent dose of THC. I’m seriously thinking of giving it a try. I can’t get any doctor to even consider prescribing Mexiletine so I seemed to be out of other options at this point. I don’t just want pain relief. I WANT FLARE RELIEF!!! I’m just wondering if anyone has tried it and had any luck with it.
I know fellow community member Satochan (Patricia) uses CBD oil. She started a topic about her experience here: Hemp Extract Drops. She hasn’t visited in about a month, so if you have more questions you might want to send her a direct message.
Also, don’t feel obligated to attend a family get together that was planned without any consideration for your illness. You’re a grown woman and can make your own decisions. If you feel you must make an appearance, stop by briefly and leave. But above all, do what’s best for you.
I agree with what carterdk said please don’t feel obliged to do anything you don’t feel you are up to they don’t know what you are going through. People are always telling me to go and sit outside in the sunshine!
As for your blisters be careful keep an eye on them. I had what started off as blisters and they turned into ulcers.
Hi I am about to try another type of medical marajuana- I tried a high CBD tincture but the intensity of the tincture was too much for me. It made me nauseous and I couldn’t take it long enough to judge if it helped. My pain management doctor who is licensed to write Prescriptions for MM in NYS, said he wanted me to try the high CBP preparation because CBD reduces inflammation. I will start the week of June 4 th and do for a month. I will let you know what I think.
The redness seen in erythromelalgia is technically not inflammation though. Redness in inflammation comes from chemicals released by white blood cells that drive blood to the site of the affected area. Erythromelalgia isn’t immune mediated. So while there is erythema in both inflammation and erythromelagia, the reason for the increased blood flow is physiologically very different. Perhaps there is overlap with cannabidiol, but anti-inflammatories are generally of little benefit to patients with erythromelalgia unless their EM is secondary to an auto-immune disease. In that case, treating the underlying condition is the best way to reduce EM symptoms and anti-inflammatories can be of benefit.
sorry to hear. i feel your pain.
be your own advocate- it’s a rare disease people don’t understand the pain, struggle, triggers and limitations.
if you knew a loved one was in pain at your house and dying to leave… would you be upset if they left? treat yourself with loving kindness.
i have so much swelling i wear compression socks all day, no matter the heat. if i don’t they swell until i can’t walk. i am currently hosting 3 open ulcers on my feet. epsom salt with cold water several times day soaking.
Hey Carter! So good to hear from you. I do hope you’re doing well. This site is my “safe place” where I run when I’m burning. I started Cymbalta about 2 or 3 months ago. The burning has improved so vastly, that I stopped the evening dose of Mexilitine about a month ago. Have had to go to a cardiologist due to rapid pulse and intermittent high BP. Looked at the side effects of all my meds so have stopped the morning 150mg dose of Mex 2 days ago. I’ll see what happens pain wise. Yes I’m still using CBD Oil and have been doing so well that I’m reducing the evening dose to only one dropper. The Lyrica has nearly stopped my migraines. Just taking things one day at a time.
Excellent! It’s awesome to hear you are doing better! That’s really great news. I think it’s important community members hear success stories, when people are doing better. People need that hope, so don’t forget about us!
." Redness in inflammation comes from chemicals released by white blood cells that drive blood to the site of the affected area " so what meds do you suggest?
any luck with Effexor?
I am on tincture full spectrum hemp 7000 mg for 8 days and no benefit . from those who did benefit how long did it take before working and what dose
Most EM patients end up taking one or more of the following class of drugs:
serotonin–norepinephrine reuptake inhibitors (SNRIs), anti-convulsants (typically gabapentin or pregabalin), sodium channel blockers, or a topically compounded cream with ketamine (an anesthetic) and amitriptyline (a tricyclic anti-depressant).
While we are all Desperate for flair relief, it’s also perfectly acceptable, OK, to be expected, that we have and need “pity parties” a.k.a periodic depression. Every disabled person I know goes through depressions. Doesn’t matter if they been disabled for 30 40 50 years, the depressions come and go.
Ours is a terrible disease. There are no cures, and no sure ways to get pain relief. Lying on your back with your feet in the air feels like not much of a life – especially when you’re used to getting pleasure from being out doing things.
Other than soaking in cold water – which can hurt your skin – I suggest wrapping blue packs in a towel. It’s the only way I’ve minimized flares while my feet are dependent (hanging downward). none of the creams help me, but my flares have reached the point of serious disability where I can only go around in a wheelchair or lie on my back with my feet elevated.
Yours is a good reminder that even if ours is bad there is always someone that has it worse. I use to say at least I don’t have cancer or something fatal but honestly I almost wish I did instead of EM because cancer is curable in many cases. No I really don’t want cancer but the idea of having something curable is a lot more attractive than having something incurable that no one is even interested in researching.
I have tried to go the ‘natural’ route, experimenting with supplements, oils, more caffeine, less caffeine, antihistamines, etc for the past 3 years without too much success, as my EM has worsened. It’s gone from red and hot in my toes to include swelling with each flare. I flare every single day usually in the afternoon into the evenings and now at night. I live in CA, USA where marijuana has become legal. After researching I decided to try it. I found a 3:1 ointment (3 parts CBD to 1 part THC) that gives me the most pain relief. I wait until I have a flare then apply a small amount to the affected area. There is almost immediate pain relief. In fact, I have to look at my feet to see that they are still flaring. The effect lasts a couple of hours for me. I don’t know if I’m allowed to mention the brand, but feel free to contact me for more info if needed. Now I’m wanting to address the swelling because I am down to wearing one brand of flip flops. Any shoes or socks result in deep blood blisters on my toes that take weeks to resolve. Today I go for some tests ordered by a Rheumatologist that I expect to see soon. My MD finally approved a referral. I really don’t want to take conventional meds, but I realize that I may have to. I, too go a pity party on occasion and sometimes I stay too long. It’s human. I have a good support system, so I try to remember to count my blessings and to not be too hard on myself (or anyone else).
