Anyone tried laser treatment (e.g. IPL on face/hands/feet)?

General
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One of the things that bothers me most is that my hands fill with blood pretty much immediately when placed down below waist level, unless it is very cold and my blood vessels are constricted.
I had this issue for years before I started having EM flares, but it’s probably related.

I think that IPL (intensed Pulsed Laser) might help with the redness and blood pooling, but I am worried about trying it in light of the EM. It can help with rosacea and rosacea flares, where blood vessels dilate on the face and nose. However this is not a neuropathic problem.

IPL does effect the nerves because is effects touch sensation; I once had a small test patch done behind my ear (I ended up not going for the treatment for very mild rosacea on my face, because I was worried that the rosacea might actually be EM on the face. I didn’t want to risk anything).
This reduction in touch sensation was temporary for me, but I would be wary of having it done on my fingers were touch sensation is really important. But, more importantly, I wouldn’t want it to exacerbate the EM on my hands!

Would love to hear if anyone has had tried any form of laser treatment on a part of their body that is affected by EM.

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Hi,

Similar enough situation (Male 23). I actually began to develop what I considered Rosacea about two years ago, red, hot face. I also had been struggling with some hormonal acne. My Em began to develop last summer, my hands would get hot and red more and more often, but also, with exercise, I would also just get a general uncomfortable sensation of itchiness/hotness/redness kind of around the whole body. I went and had one IPL (as well as a chemical peel) last October to help. I think it helped with the redness for about a month, but I discontinued because I was left with some hyperpigmenation around my chin and also some patchiness in my beard. I spoke to my provider (at a highly regarded cosmetic practice in Dublin) and she just kind of blew it off, at that point I realised I needed to see a real dermatologist about my skin. As the months went by, my Em (I did not know what it was at that stage) began to get worse in my hands and my feet started to get red too. I eventually went to the Institute of Dermatologists in Dublin in May. I was prescribed accutane for my skin. Here was the first time I spoke about my EM to a profesional (at that stage I think I figured it out that it was EM, seemed to match perfectly). We decided to first try an antihistamine for two months, this sort of helped with the itchiness, but nothing for redness/hotness. After two months, we then tried aspirin, which unfortunately hasn’t really made a different for me. I go to my dermatologist next week and I plan on asking about mexiletine (sodium channel blocker), I hope that this will work. I also take magnesium every day, which seems to prevent major flares. Sorry rant there.

As regards your situation, I am not sure if IPL would help with your hands, especially if it is EM related, but it may. What I would advise, is that if you are to get it done, go to a dermatologist, not a beautician. I would also try magnesium and look after your hands too with a good moisturiser.

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Also as regards redness on your face (mild rosacea), yes it is hard to tell whether it is EM/rosacea, I think I have both. But, for your rosacea, I think first steps is a good skin care routine. Get a good moisturiser, SPF and the active ingredient azelaic acid (prescription form is finacea). A good brand is the Ordinary, they are cheap and no extra irritating ingredients. There is a reddit page for rosacea which offers some great advice. But IPL would be beneficial for rosacea on the face (if your male avoid the beard area). But I think first start with a good skin care routine/see a dermatologist!

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Thank you for the advice and I’m really sorry to hear about your situation. It looks like you have tried a lot of things- I know it can be exhausting trying to find solutions for problems that most people, even medical professionals, don’t know exist.

I am also 23 incidentally. I’ve had a good facial skincare routine for many years. I cleanse and use moisturiser daily, with good products. I like rosehips oil for the rosacea- I think it is slightly antiinflammatory. I’ve heard it also does great things for acne, though I hardly ever get spots so can’t test that one. My mum had very bad acne and she tried ozonated oils. It was the only thing that worked for her, and she many laser and chemical peels.

I am suprised that the IPL provider wasn’t more careful about the beard. IPL is used routinely for hair removal after all! :confused: That’s not very good at all. I have also heard about the hyperpigmentation problem. I think I would take it over the redness, but it’s all so risky. I’ll be seeing a rheumatologist in October. I have combined raynauds and EM, with some joint swelling associated with the raynauds. So my GP wanted me to see a rheumatologist first, and maybe they will refer me further to a vascular specialist. I will try to find out if the IPL is really unadvisable. Maybe if I try a medical IPL surgery, they will be careful about doing test patches and making sure everything is ok.

It is a great shame with the exercise. I find it helps keep EM flares at bay tremendously, provided I don’t let my hands and feet get cold.

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I have tried on my face when docs thought i “just” had flushing … it did not help, and even made things a little worse. Recommended to me by multiple docs, too. I was eventually referred to derms in complex medical derm who said their experience is it wont help in cases of nerve involvement and they have seen it even trigger a pain syndrome (face), perhaps by stirring up too much inflammation that sensitizes the nerves. Another thing is effects will be temporary and you will have to get repeat treatments - which is $ and risks an adverse reaction each time.

Honestly, my family and I were so sad to spend thousands on 3-4 tx’s when in hindsight they had no chance of helping my severe case. I thought it was my only option at the time.

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Hi, well I have only really been proactive about things since May so I think I am really only at the beginning of my journey. It all has come on so suddenly and I spent a lot of time just kind of ignoring it, thinking my skin was just sensitive or everything was rosacea related.

As regards skincare, accutane has been doing absolute wonders, I developed acne very late, probably around 20, but accutane has cleared it up, obviously some texture and scarring issues left, but once I finish accutane, I expect I will be straight on tretinoin and azelaic acid to clear up whats left. Obviously SPF is essential.

Yes, my provider just said the beard thing was going to temporary, I am a late developer so my beard was just starting to come in, I still have some slight patchiness, a good bit has grown back, I expect in a few years when the beard thickens out, it won’t be noticeable at all. But that did cause me to loose my trust in that provider (which turned out for the better because I have now found a brilliant dermatologist). As regards hyperpigmentation, the thing is I am actually not sure what caused it, the IPL or the chemical peel, its just a dark red block on my chin. I hope that tretinoin, vitamin c and tretinoin will clear it up. But I think IPL should be absolutely fine, great actually if you are working with a real profesional. But first I would be using SPF and azelaic acid, they are by far the most effective skincare for redness.

No exercise for me causes flares, I was a high level athlete about three years ago, expected to make the olympics in athletics, but injuries put that at bay. I don’t go to the gym or run anymore (for injuries and EM) but I do swim, almost everyday, when I am fit I can do 2500 to even 3km a day with a triathlon group.

As regards your EM, is it just your hands? I also began to get Raynauds as well (started to develop around January), my hands change from white/purple to red. Please keep me updated when you go see the rheumatologist. My dermatologist and I have just been going off the patient guidebook from the EM association, they have a list of treatments which may work. I really hope that mexiletine will work for me when I try it, I have read that is has done wonders for others!

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Hi @Anthony944 So sorry about the halt to your exercise caused by injuries :pensive: Working out is a really central component of my life, so I know it’s so frustrating and sad to have to give up your favourite sports for any period of time. But it’s so impressive you were so high level! I like running but have never been particularly fast. I admire people who are :slight_smile: It’s great that you have swimming still. I struggle to use normal swimming pools because I am very sensitive to the cold. If only the water was kept warmer…

I have EM in my hands and my feet (and potentially the redness on my nose and chin, if that isn’t plain rosacea). I developed Raynauds in my hands and feet when I was 12 or so. But my entire legs would often look blue/purple. I was quite underweight at the time. I’m pretty sure that’s what triggered it. Gradually, my hands became purple/red pretty much constantly.
If I remember correctly, I only started experiencing EM flares last October at the age of 22. My hormone balance had changed quite a bit in the preceding couple of months, so I think that’s what caused the EM.

I will definitely let you know how it goes with the rheumatologist! I’m somewhat woried that they will just try to give me loads of medication. I’m quite against meds for various reasons, and up until this point in my life I’ve managed to go mostly without taking anything serious. It all has its side effects, some of which don’t become apparent until quite a bit later :frowning:

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So sorry you had such a nasty experience standing_cat :frowning: