Hi all. I am new here and have some questions I’m hoping some of you can answer. I started with Raynaud’s on my hands and feet while in my twenties. About three or four years ago (I’m 55 yrs.old now) I developed EM on my ears occasionally and my feet. I do get bad burning flares now and again but mostly they get red and burn only slightly on a day to day basis. They are usually a lovely shade of blue/purple/pink when I’m sitting or standing and go back to almost normal when I’m in motion or my feet are elevated. My question is I’m considering surgery on my face and possibly using a laser (IPL and alike) to remove brown spots and broken blood vessels (I have facial Rosacea). Does anyone have experience with facial surgery causing EM to emerge where you did not have it there previously or get worse near/on the area you seldom have flares after surgery of any kind? Have you undergone lasering on your face and did not develop EM there afterward? I don’t want to live in fear of EM with every decision I make with regard to surgery or procedures but also don’t want to risk EM spreading or getting worse. Thanks in advance.
I had IPL on my face for rosacea, 3 treatments. It did not cause any EM flares on me, however seemed to make my face flare a bit more.( rosacea).
I had the laser therapy on my veins a long time ago and was very disappointed in the whole process. It was before I was diagnosed with EM. It was extremely painful, turned my face into a big scab and I didn’t really see any improvement. Sometimes you just have to accept you are who you are and the only one that has an issue with your “defects” is you. It was way to painful to try again. That was probably 20 years ago so hopefully you have a better experience.
There is no one size fits all for EM symptoms or causes. But many suffer EM from a number of triggers which can cause a flare. It always happens from heat and cold often resolves it for environmental EM and EM always gets worse with heat and also has cold help resolve it. But there are other triggers. But sometimes so many you end up walking on egg shells trying to avoid triggers and it can severely effect you’re life style. But my thoughts which are just from a care giver perspective it it’s better to be safe than sorry.
Now my mom is not a typical patient, but one with a bad case of EM. She has many triggers and those triggers seem so vast and varied, it’s like anything that adds heat, or even calories or life causes pain because pain is constant. So anything that excites her nerves causes EM flares or sometimes extreme pain as SMALL FIBER NEUROPATHY like sensitivity can happen, almost like her feet have symptoms of an overactive nervious breakdown symptom or amplified pain mapped to where one nerve feels like it’s 100 nerves.
So this is just a sample of things that hurt her or have hurt her. The problem is when you keep a diary and have multiple triggers it difficult to have a controlled measurement over triggers and the entire environment and figure out what is really a true trigger and what is not or just seemed to be. So if it triggers the pain more than once, it’s moved up on the list of things that are bad. So for my mom this causes triggers.
- Hot environment.
- Having her feet down and not cooled. Standing on her feet for a long time or really any length of time the more time she is on them the worse they get.
- salty food.
- Stress, that means excitement, even music from movies. Which may quicken the heart beat. Almost like her EM is better if she was a dead. . . I know this sounds strange but her feet feel better when they are cold. Like 72 degrees chilled which is like the definition of a dead person, where the body is at room temperature.
- HOT TEMPERATURE FOODS can cause flares. So she mixes cold food with hot food so she won’t eat hot food.
- Spicey food.
- Sugars in food. Even alchohol sugar substitutes.
- Certain drugs Metropolol, Potassium, blood thinners, asperin tramadol therapy doesn’t help, Risperdol (created onset of her terrible EM), Amitriptyline, Zanax. All these drugs caused worsening symptoms’ of flares for her. And CAT SCAN CONTRAST AGENT, but MRI contrast agent didn’t cause a problem.
- She even complained about light sensitivity, which I doubt causes flares, but that may be a mental issue or reason to create stress. She has had light sensitivity issues in side effects from drugs in the past.
So many things can trigger or appear to trigger her EM. And if a food causes a problem well she may not allow it on her menu of foods and often eats bland foods and foods that are cold. She also limits her liquid intack to avoid going to the bathroom because that activity causes her to have to move and go to the bathroom. So she has a lot of issues all related to pain avoidance.
She can be distracted from the pain perhaps and sometimes may have mental health or lack of sleep issues now that are perhaps overriding her pain in her feet. She has had problems with things like a bowel prolapse more recently and the pain from some surgeries or other issues may be so great she may ignore her EM pain because that other pain is that bad. She said the recovery from hemmoroid operations was pain about on par with the pain she feels most of the time from EM flares. Her EM flares are really bad, and some have less or minor flares which are uncomfortable and by no means they may have EM as bad. It may progress and get worse over time, but not always. I feel it’s important to keep notes and a diary of what triggers the EM, but this can be troublesome.
We also do foot chilling, but the limits on her lifestyle from EM is so bad, and she gets so tired from the RUT and isolation sometimes she seems to rebel. Or perhaps some drugs that affect her MIND, for example CYMBALTA for pain off label use may affect her mind in other ways. She has had other states or side effects from the pain or from the lack of sleep. She rarely gets long sleep sessions without being interrupted by pain. Sometimes she claims the pain was so bad it knocked her out and she literally passed out and fell asleep from the pain. Other times she would sleep and be free of pain and then a nerve shock or jolt would suddenly wake her up. She may wrap up her legs in an attempt to cut off blood flow to the legs. Note outer wrapping of the legs will cut off veins or return flow not flow down to the feet, so she is wrapping up incorrectly it seems to me but she thinks it helps. And maybe that is a form of nerve stimulus or something like artificial entrapment or pressure from wrapping which she thinks will help. NOTE: I’m listing these as COPING MECHANISMS she does, not as a suggestion list of what you should try or what may help. Just as an example of our journey and some of the things I can remember and have seen in our case. She has had times when she took pills that affected her and gave her minor EM symptoms in the past, which was XANEX for “anxiety” and “fear”. It’s important to note that some pain medications that supposedly moderate and work for perriphrial nerves have been said to be only effective if they CAN CROSS the BLOOD BRAIN barrier. And there may be a barrier in the legs and feet that is a bit like that. So drugs that pass that barrier may help EM symptoms more but then again it could be that this is because they are helping you’re brain moderate signal problems and affecting you’re sensation of pain in some way. It’s difficult to say and mostly just guesswork by any common person like me. I’m not a medical professional but even the professionals in the most advanced neurological manuals say they don’t know it all and are learning over time.
My overall advice is it’s better not to risk but of course some say no risk no gain, but it’s better off to note and at least keep a diary and try to see a pattern. If you take a nerve pill and have any worsening symptoms I must ADMIT I’m biased to suggest that is a bad risk but this based our our particular experience. So any thing that can cause heat or change nerves or is surgery can cause problems with EM, you’re taking risks with anything you do so weigh each risk and be careful. The use of electroshock like therapy was highly rejected as a good thing for my mom as far as TENS or something like that to block pain with electrical stimulation. So wild treatments may have more side effects. But also some people may seem super sensitive and even their care team and families may second guess and be so analytical or so full of guess work that they may be thinking every little thing causes a problem and we can be on a search for problems. So it can also be a perception that one thing caused a trigger of EM when it was just a coincidence. But true triggers will cause the triggered event to happen again and again. And some side effects like for example flares from hot water or heat or activity will always happen which is embedded in the condition of EM and other things like the chilling of the feet to almost freezing status will seem to help resolve the flare, but often only temporarily. So it’s a fine line and a diary and careful analysis may help of course. My mom has always been a person who seems to get “RARE SIDE EFFECTS” from any drug, and if it has a rare side effect she may experience those bad side effects. So for a person like my mom the less drugs the better off she is and most of her life she stayed away from all kinds of drugs, but since EM we are constantly on a baseline of drugs that work best and from time to time on others usually not many however as we are near a drug limit with her.