I have been dealing with facial flushing and burning for 17 years now unfortunately, and found some things that help me to shut the flares down.
Physically cool yourself and the flush down
It will most likely be a natural urge for you to look for something cool when you have a flushing attack. When your face feels throbbingly hot and glows or downright BURNS, there are ways to cool the skin and to make the blood vessels in your face constrict again. This I found is the best way to stop the flare. In the long term you can look into more thorough ways to prevent flushing, and I will mention the one I found helpful myself below. But looking at short term treatments, there are ways to calm your flush down right away.
Fans are great for cooling the temperature of your skin down. Try to not wrap your body up in layers and more layers of clothing and blankets, even though your body might feel chilly and the fan being on might want you to do so. Keep the layers thin, so your increased body heat (as a result of the facial flaring) can release through all of your body, and not just your face.
The fan should be kept at a bit of a distant, ideally. Putting it right in front of your face will not damage your skin right away (although it can dry our your skin in the long run), but it can give your blood vessels an urge to rebound and dilate again once you step away from the fan. Having a steady but milder flow of air is better. Try to keep the room temperature lower than normal. Using a fan in a very hot room will act like a hair dryer on your skin, and might make the flare even worse.
It really depends on each and every person which temperatures are too warm and what temperature is just right, to keep their faces from flaring. Usually, 18 degrees Celcius is still OK but 20 degrees can already be too warm for rosacea. For me personally, I prefer 16 or 17 degrees, all time of the year. In summer, airconditioning can help you stay cool. That speaks for itself. The problem of course is when you create your own private Ice Castle in the home, the chances are you will flush much more and deeper once you go outside and the temperature of the air there is significantly higher. There is a theory called the Warm Room Theory, and it explains what happens to your skin when you go from a cold room into a warm room. It explains why big changes in temperature are not good for your rosacea. Written by someone with rosacea. Here is the PDF link to the complete document.
I always wrap my gel packs up in a cloth of some sorts. Never use it straight on your skin! I make sure that it is a shirt of mine and that I washed it in perfume free, neutral washing powder, and had it rinsed out properly before letting it dry. In case of a severe flushing attack, I wrap it around a very cold gel pack and feel the temperature on the inside of my wrist or hands first. It is probably best to check the temperature this way, because your face might feel so hot, that your nerve endings will not be reliable in 'feeling' if the pack is too cold or not. You are better off wrapping the cloth several times around the gel pack, just in case.
One thing to be very very careful with, is using a frozen gel pack when you are lying in bed. I learned this the hard way :( In 2007, I stayed with friends in Northern Ireland and was particularly flushed one night. I had my gelpacks in the freezer there, and used a fan. I got out to grab my gel pack, wrapped it up, put it on my pillow and pressed my burning cheek on it, which felt really good. I dozed off... And woke back up half an hour later, with a stiff, ice cold and frozen feeling cheek. I got rid of the gel pack right away and rubbed my face a bit, hoping it would be a temporary cold reflex. But the next day, that side of my face was burning badly and there was a strange sort of constant nagging, sharp nerve pain on the spot where the cold pack had been pressing. When I got back home, a few days later, the pain was still there. Another week later I still had it, and because of the nerve pain, that right cheek was triggered a lot more to flush. It was also more red than the other. I was pretty concerned by now that I had done some serious damage to my face and visited my dermatologist. He said he thought I had triggered some neuralgia and had a mild form of frost bite. He sent me to a neurologist at the hospitals pain centre. This doctor was very helpful and explained me that nerves take an awfully long time to regenerate and heal. Six months! By then it was only 1,5 months that I had my symptoms. He prescribed me different nerve pain medications (Neurontin and later Lyrica) and said that I needed to give it time. The pain medication helped but made me more flushed after a while. I stopped them, the flushing went down, I restarted them, my family even noticed that the flushing got a lot worse. And flushing for me means nerve pain by default, just from the pressure on the blood vessels and the facial swelling.
Luckily, after 6 (long!) months, I noticed the nerve pain eased away. But don't you think now that I learned my lesson! :) This silly bint allowed it to happen a couple of times more, ugh.. But luckily never as serious. It gave me big scares though. The past years I have the iron rule for myself, that IF I ever am flushed enough to need a cold pack at night, I will get up. Sit up. In the light. No lying down and bringing a cold pack to bed. My medication makes me sleepy at night and I can be awake one moment and deep deep gone the next, so it's just not safe.
A hand held travel fan is another way to stay cool, although this will add some unwanted attention to you, when you're out in public.
Travelon has a hand held fan with 3 speeds.
*Spray your face with water mist
For instance with Avene thermal water spray. I had very little expectations of a can of, basically, spring water. But a rosacea friend in the States said she used it in summer to hydrate and freshen her face, so I reckoned I should try it too. Used it in the past to no avail but I have to say, it's lovely. The lady selling it had a long winding story about its proven anti inflammatory and anti redness actions, how it was all tested, scientifically proven and consists nothing but thermal spring water.
Try to identify what triggered your flair up
And try to avoid it, if possible. Some common triggers for a rosacea flair, with hot burning skin, are:
*stress or emotions that make you feel worked up.
*if you have allergies, things like pet dander, pollen or perfumes might provoke a flare.
*hot baths or drinking hot drinks
*skin care products that contain irritants. This depends on your skin sensitivity, but things to look out for are parabens, perfume/fragrances, essential oils, dyes and strong acids. Also be careful with sodium lauryl sulfate, formaldehyde releasers -they preserve a product against bacteria, mold and fungi- for instance bronopol, diazolidinyl urea, DMDM Hydantoin or quaternium 15. Foaming agent cocamidopropyl betaine is an irritant too, as well as wool related products (lanolin, wool fat or wax and wool alcohol. See this Paula's Choice article for more information on skincare irritants.
-Strong cold winds
-Some people find that sitting long times behind a computer screen flares their rosacea too.
The same goes for fluorescent lighting, which can actually increase inflammation in some cases.
Also see your medical specialists to be sure you suffer from rosacea, and not from one of the many other medical conditions that can cause facial flushing. Also, it is always good to have blood tests done to see if you have vitamin or mineral deficiencies, including low vitamin D levels, which is very common for people with rosacea or who otherwise avoid the sun. And don't forget to test for HIGH BLOOD PRESSURE, which can really affect facial flushing and burning, and should be brought down to normal values.
Is your skin very dry? Dry skin is more prone to flushing and redness. Consider using a moisturizing cream or if your skin is too sensitive for this, consider a humidifier in the house. And drink plenty of water.
I cannot really use creams on my face, as they all seem to make me more red and irritated, but this is rare and most people with rosacea are perfectly able to find a soothing and irritant free moisturizer.
Instead, I try to keep the indoor air humid enough. For some people, high humidity is a rosacea trigger, but for me it is soothing on my skin. Just like physical sweating seems to make my skin more pale. Complete lack of sweating can in fact trigger skin redness and flushing. Therefore I use a cold mist humidifier. You can adjust it to just how high you want the humidity to be in your house, and because it is cold mist, it will not increase the indoor temperature.
It is considered 'still standing water' however, so it's important to thoroughly clean the thing every other day. You don't want to spray mold remnants on your face through the air, after all! :)
And of course; always drink enough water. Tea and coffee do not count! I find that adding ice cubes to my water helps me to cool down a lot faster. I tend to put a small plastic bottle with water in the freezer. An hour or two before I need to head out (IF I need to head out, preferably not on bad days haha), I will take it out and let it warm up a bit. Then I bring it along and because of the ice pieces in the bottle constantly slowly melting, you will have very cold, fresh water for hours to come!
I wrote a blog post about food triggers, and it got grossly out of control after I kept adding more and more updates to it, so I will not expect anyone to dig through that whole thing. In summary: food triggers are very individual, but some general rules of thumb are that alcohol, spicy 'hot' foods and foods very high in histamine (think old ripe cheeses for instance) are most likely to flair your rosacea. Otherwise, it's a matter of trial and error, unfortunately. For some people, cutting out foods high in sugar will considerably affect the redness and flaring of their skin. Likewise, grains and/or dairy can negatively impact the skin. You can eat very healthy still by cutting those food groups out, focusing on a high protein (meat and fish, ideally organic, so they contain as little chemical hormones and antibiotic residues as possible) and high vegetable diet. I notice an incredible difference in the severity of my rosacea when I stick to this diet. Problem is; I love sweet stuff! And bad stuff in general, even savory bad foods are a temptation after 5 days of vegetables, fruits and meat. I try to snack on things like dates, coconut, scrambled eggs, olives, melon, the odd rice flour pancake. I make ice sorbets from fruits or rice milk. A day or two of very high carbohydrate intake (delish!) will typically make me more red and flared the next days :/ I try to stick to wholegrain brown rice and sweet potatoes therefore and skip the regular potatoes (YES, crisps count for them too :P ) and all white flour products. This low carbohydrate diet is part of the Paleo Diet, but also of a diet linked to the Auto Immune Protocol.
Again, this is personal and some people notice no change whatsoever in their skin when on a diet. But if you feel your face is flaring and burning and awful lot of times, it is worth doing an elimination diet... What my doctor recommended at the time, is to start with a couple of 'safe foods'. He said; white rice, chicken and salad. Of course, one of those three could be in theory your food trigger, but at least it will give you a short time to figure that out, with only 3 food groups. Then, if all goes as the doctor planned, you will be able to add one new food item to your diet every day.
Now, the problem is of course that not everybody has an instant skin reaction to a trigger food. Some even say that it takes several days for their skin to react. You can take it slowly of course with new food introductions. But most people might simply not have the time for this slow paced food experiment. You can always take a look at your normal diet and try to cut out the worst offenders of the food world (in terms of rosacea); alcohol, spices, old cheeses and other high histamine food (yogurt is also one of them), gluten, dairy, processed (fast)food and high sugar content. Basically; most of the good stuff. It can make an immense difference to some people with rosacea however. There are many stories of big skin improvements, once people started to eat more 'clean'.
I have a feeling that people with subtype 2, papulas, tend to maybe see a bit less of an effect than those with general (non fixed) redness and flushing. Subtype 2 sometimes responds very well to treatments aimed at eliminating demodex mites. ZZ cream used to say it helped but now there is a much more straight forward and reliable cream on the market, called Soolantra. I'm working on a blog post on this. When your skin reacts well to Soolantra and it clears it, then you might really have no need to cut out all sorts of foods in your diet. But ypically, the facial flushing and burning is more difficult to treat and Solantra isn't designed for these symptoms, although it does seem to help sometimes!
If you have accompanying bowel symptoms (or even if you don't!), consider adding a probiotic to your daily diet. Here is a great and easy recipe for home made kefir.
If your flushing problem becomes chronic or disruptive of your every day life, consider medical treatment to control the flushing:
*anti flushing medication:
-beta blockers like propranolol or atenolol
-Antihistamine medication like Xyzal, Zyrtec or any other brand. Xyzal is relatively new and comes with less side effects (like drowsiness and tiredness) than an old brand like Benadryl.
-certain antidepressants work on the central nervous system and reduce facial flushing. Remeron is one of them, but several others have been mentioned positively on rosacea forums, including Celexa and Zoloft. I wrote here about the medication that helps me with my rosacea symptoms.
*medication to reduce inflammation:
-Antibiotics. Only low dose doxycycline (Oracea / Efracea) will help control inflammation without giving additional risks for antibiotics resistance. It should be the first antibiotic to try, as you can take it long term without the type of side effects that higher dosed antibiotics from the tetracycline family, metronidazole/azythromicine/lymecycline give. Not just resistance problems, increasing the risk of you becoming immune to some antibiotics, but also the risks of bowel conditions and disruption of your natural gut flora. Low dose doxycycline is too low to affect your good gut bacteria, but is strong enough to help your skin fight inflammation.
-Low dose antimalarial medication. Both plaquenil and mepacrine have proven efficient for some cases of rosacea. They need to be taken long term and build up to high enough levels in the blood over a period of at least 5 weeks. They reduce inflammation in the skin. I wrote before about them.
-Some people find relief with low dose roaccutane. This is a vitamine A derivative. It's mainly used for acne and subtype 2 rosacea, with blemishes and papulas, but there have been some success stories for people with only general skin redness and burning and flaring. This drug comes with some more serious potential side effects, although at low dose, the chances of these happening really reduce.
-Other anti-inflammatory medication
Medication from the NSAID group for instance.
PLEASE always discuss with your medical specialist what drugs and supplements you take together.
A friend of mine passed away due to mixing and matching the wrong medication combination together, and I know of several other people to whom this happened. The more different meds you take together, the more intricate the ways they can interact with each other, and the more at risk you might* be to overload your system. Just be sensible and discuss it with your doctor. Most doctors seem to forget about intermittent check ups (blood work mostly), but always remind your doctor now and then to check blood levels, liver function etc, especially when you take a bag full of medication at the same time (as many of us unfortunately face daily, especially with other underlying illnesses at play).
-There are natural herbs and supplements that can help control some of the flaring. It's trial and error, one supplement might work for one person, and cause a flare for another. It's best to take the time to try one thing at a time, so you know exactly if something is working or not. I wrote a blog post about natural anti inflammatories.
*Red Light therapy has helped many people control their facial flushing, burning and redness. I am up for a new trial with it soon and will report once I do.
*Lasers or IPL isn't for everybody, but it has the potential to truly reverse your rosacea and facial flushing. Some people have amazing results, some others are unlucky and see no improvement and some are extremely unlucky and got worse from them If you do the research, find a knowledgeable, experienced and approachable laser specialist, and make sure to do some test patching, you increase your success chances significantly.
*Topical creams can help mostly with the papular, acne-like (but not the same as acne!) rash, but some creams have shown potential to control facial redness (erythema) and inflammation. Some of these creams are Soolantra (blog post on this cream will be up soon), Finacea or metronidazole cream. There are more out there, but results vary. And they don't always help with rosacea subtype 1, where the main symptoms are redness of the skin, flushing and burning. For those who can tolerate these creams, they have been helping some subtype 1 patients, however :)
-Some people find relief with low dose roaccutane. This is a vitamine A derivative. It's mainly used for acne and subtype 2 rosacea, with blemishes and papulas, but there have been some success stories for people with only general skin redness and burning and flaring. This drug comes with some more serious potential side effects, although at low dose, the chances of these happening really reduce. Taking too high a dose can actually create or worsen existing flushing problems, so the dose is really important here.
-Mirvaso helps some people but has a very bad track record. Far too many people reported severe rebound after using this cream. Sometimes their rosacea simply worsened from it. Very tricky cream, please inform yourself about the reactions that are mentioned on the web. I made an inventory of the good and bad reviews online in the first year or so after it came on the market, but it is just the tip of the iceberg, as I stopped adding new reviews to the (long) page at some point, but I have since been reading only more reviews. It might help you, but I'd just inform myself first about the risks and also be careful to test patch the cream first for a little bit of time.
Protect yourself from the sun, with sunscreen, hats or if need a sunbrella.
And try to stay positive. Inform yourself as much as possible on rosacea forums or in online groups.
Someone wrote this the other week on The Rosacea Forum, and I very much agree:
"The way I cope is by refusing to give up hope. I keep on learning all that I can about this disease and trying every remedy that I see on here that makes sense with the medical knowledge that I have. I keep hope that one day I will go back into remission. It happened to me once for about two weeks. I've heard of very few cases where it was a doctor whose tireless research found something that brought someone a lot of relief. Usually it is the patient doing a lot of research on their own. I'm not saying not to see doctors. Find a doctor who will listen and take you seriously when you take your ideas to them. Find one who will work with you to find relief and make this livable, but know that you may have to do a lot of the research on your own. Most doctors simply don't take the time. They don't have as much at stake in this as we do. I've learned so much from this group and other websites that my derm had no idea about. It was here that I learned about the paleo diet that has helped me so much, for one thing. My derm had a list of about 7 foods that can be triggers in some people. I discovered that the list of potential food triggers is much more vast than that. Feeling helpless is one thing that can make people want to give up and feel suicidal. Put that energy into learning new things that might help. That's what I've been doing and how I cope."
In general, try to stay active. Don't cut out your friends and family, despite feelings of declining self worth perhaps, or the desire to close yourself off from everything and everybody. In the end, the way forward for most people is to start spending time with loved ones again, letting people in, receiving support and dedicating time and energy again on your work, hobbies, talents. It is very time consuming and stressful to learn to deal with rosacea and to educate yourself as well as you can, and this can feel very overwhelming at times. It is normal to feel depressed at times about the way your skin looks and feels, and about the many lifestyle changes it often demands. But when you feel you are supported and that there are things you can still try, it will most likely improve your mood and your resilience. I wrote earlier about dealing with the isolation that chronic disease brings. I'm not the most optimistic person myself by nature and have periods of depression, but these things have all helped me to get going.
There are also very good and welcoming forums and online patient groups. Here are a couple:
The Rosacea Forum
Rosacea Support Community
The Rosacea Research and Development Institute
A members only Rosacea in English facebook group
A members only Make-up for Rosacea facebook group
A members only Rosacea Healing from the Inside Out facebook group
And last, in summary, this is what helped me so far
after struggling with rosacea since my early student days in 1999:
-Figuring out what my particular triggers were. They can be different for everybody, and it takes a bit of time and frustration usually to figure your own skin triggers out. In my case they are indoor and outdoor heat, sunshine, stress, chemicals in perfumes and other cosmetics. Certain foods and drinks are also a trigger for me, including alcohol, spices, chemical additives (like E-number preservatives). Foods high in histamine trigger my facial burning and redness as well as foods high in sugar. Gluten make my bowel condition worse and in effect gives me more skin inflammation, including papulas (I normally never get them). For me personally, dairy also makes me more red, as do old cheeses. I sit long long hours behind a computer for my work, but I try to have the brightness set to low, or dim the screen even more with a free downloadable dimmer device.
-Trying out different rosacea treatments. Some worked better than others. Some set me back, but others helped me to improve matters. It has been painstakingly slow and demoralizing at times, and I am still looking for improvement, as I haven't cured myself by any means yet. Things have just improved compared to 2005, when all I could do was use coldpacks and fans and suffer. Always severely red and burning, my blood vessels seemed to have gone ballistic.
I tried so far:
-Traditional Chinese Medicine (didn't help me)
-Acupuncture (Unfrt. didn't help me, but has helped many people with a host of different health issues. I am not sure it can help with the more serious and severe medical issues, but it won't harm you either - if done correctly hehe)
-Natural herbal therapy (helps me clear eczema flares but never really seriously helped me with my facial flushing, personally. Nevertheless, there are anti inflammatory supplements like fish oil/omega 3, flax seed, boswellia, and a host of others, which do help beat inflammation on a low level in the body.)
-3 months of oral doxycycline therapy (made my flushing and redness worse and gave me added bowel problems long term, BUT these treatments tend to work very well in fact for many people with rosacea. Trial and error, try try try, with the help and cautious eye of your medical specialist.)
-Diet changes (made a big difference for me).
-All sorts of creams, aimed at treating rosacea, or reducing redness. (The first couple of years my skin handled creams well and they helped me, I think. After about 5 years, my skin suddenly became hypersensitive to any topical and burnt. Dermatologist told me she wanted me to stop all cream experiments and leave the skin alone completely. This helped me to calm things down, and I don't use topicals anymore now, with exception of deluded jojoba oil around my eyes, mouth and forehead.)
-Red Light Therapy. I didn't give this enough time and trials, as I used it in my worst year to date, when I flushed 24/7. I have found my handheld unit back and will try it again these months, to see if by now it works better for me in reducing redness and flushing. Now that I use medication to reduce my symptoms, and now that I no longer flush from every little twitch.
-IPL. I had test patches of all sorts of lasers done over time, which didn't give me clearer results. I had read some patient reviews on the online rosacea forums about a certain Dr Patterson in England and visited him. Long story short, he didn't do test patches and I had a full face IPL treatment done in 2005, which worsened my rosacea a lot, until this day. I can't believe I just went for a full face treatment tbh. Ever since I am red and I flush all over my cheeks, whereas before the full face treatment I only flushed on the upper cheeks. Also, my general redness got worse from it and I flush a lot quicker and longer now.
Nevertheless, there were so many good results made by rosacea friends online, that I couldn't believe all laser and IPL were unsuitable for me. In the years that followed, my dermatologist in Holland and a hospital laser specialist, Dr. Leeman, tried out various laser machines on my skin, in small areas on my cheek. None of them gave any improvement and most gave me several weeks of inflammation and deep redness. He was a bit startled, as most of his patients with mild rosacea symptoms improved with his laser treatments. He thought my skin was very sensitive and basically too sensitive for laser, and my flushing problem was too severe for laser. I don't really have a lot of broken blood vessels, just a couple of tiny red dots here and there from years of flushing. But nothing clearly noticeable. And often, broken blood vessels on the skins surface as easier to treat than deep flushing, although it is possible and many people with rosacea had success with either laser or IPL, both in terms of skin redness and flushing.
I wasn't quite convinced yet by then and reckoned I just needed to see a specialist abroad (because let's face it; everything coming from abroad might sometimes seem better, when you feel desperate about something). I visited Dr. Chrouch in Swindon, UK, who was in fact very knowledgeable and extremely kind. He agreed on doing several rounds of test patches and he was very cautious. Lasers didn't make any dent in my redness but his Lumenis One IPL machine did. However, once we did a full face treatment with the same settings, it made things worse again, and I needed treatment from my local dermatologist to get the severe inflammation down in the month after. I don't think that full face treatment made matters worse in the long run, perhaps a little bit, but nothing like the first IPL round with the other English doctor did. Dr. Chrouch in the end concluded that I have extremely reactive rosacea and extremely sensitive skin. That the first IPL sries was done with the wrong machine and the wrong settings and energy, and triggered massive inflammation and new vessel growth, but that IPL in general wasn't for me, in his opinion. The only way could, potentially, be to zap small areas of my face at a time. Not a full face treatment anymore (but only because my face reacts so hysterically to the laser, normally full face is not a problem if you checked the right settings first). Unfortunately Dr. Crouch passed away recently, much too young, on September 10th 2016.
I used to be able to live more or less a normal life before. I never used a fan. Ever since, I have to have a fan on almost all the time, and I can't handle higher temperatures much. I flush at the drop of a hat, but with lifestyle adaptations I have adjusted, in order to just keep my face as pale as possible. When I'm not flushed, I have less burning sensation in my face. But my life has really changed since the IPL treatment, even more than it had already changed since my rosacea started. It's depressing, but I try to make the best of things. I walk in the evenings, long walks when there is no sun and the temperatures are down. I can meet people as long as I don't overheat myself. I can bring my flushes down with the things mentioned above (fan, cold packs, trigger avoidance), and I no longer suffer from heat and pain 24/7.
-Medication. I saw my dermatologist Prof. Tony Chu (Hammersmith Hospital, London) at the end of 2005 and he put me on a combination of 3 anti flushing medications: clonidine (0,075 mcg 3 times a day), propranolol (40 mg 3 times a day) and mirtazapine (between 20 and 30 mg a day, I started with 30 mg for some years but now reduced it to 20, as I find it helps me more at this low dose). I also take an antihistamine called Xyzal (10 mg a day). They all helped me a lot! People sometimes ask me how much it helps me, and it's hard to make percentage estimations, but I couldn't be out without a fan before and flushed literally all day and evening and night, and now I can stay unflushed as long as I stay cooled and go out and not be one hot burning mess instantly. I'd say it improved my flushing by 60% perhaps. Some months it's better than others and this summer was not good, as it was way too hot and for too long a time, but in fall and spring, with mild temperatures, it's all a lot more manageable now. I wrote here about the medication that helps me with my rosacea symptoms.
I also tried a number of other medications, which I stopped again because they didn't help my rosacea or because they stirred my flushing further up. They help many other people with rosacea, however. This is just a personal list of what didn't help me.
-mastocytosis medication; bilastine, pantoprazole and zaditine.
I use make-up very very rarely, maybe twice a year. I use La Roche Posay make-up for sensitive skin then, I wrote about it here and here.
I'm a bit gutted about it all, especially when I read success stories. I just want it to work, and get on with my life like it used to. With so many different laser and IPL machines to work with, it's very tempting to think I just haven't found the right practitioner and machine and setting yet. So, in 2011 and 2012 I gave it another shot and saw a Melbourne specialist called Dr. Goodman, who had helped a friend of mine clear his rosacea. He did two rounds of test with the V-beam perfecta, both on a lower part of my cheeks, but was also a bit doubtful about it all, and unimpressed with the test patches, which didn't show anything. For now, I decided to just settle for the status quo.. It's very unpleasant to still burn and flush at the drop of a hat and to always have to stay cool, it feels like I'm a caged polar bear in a South American zoo at times, but it has taken mostly all my time and energy and concentration in the past 17 years to find treatments and to try out things for my rosacea. It has gotten in the way of eagerness in respects to career, in the way of family, in the way of my social life. I get overwhelmed when I feel I need to keep trying new things, as I get such deteriorations so quickly, meaning bright red burned up and house ridden. For now I just stick with my medication, my lifestyle alterations. I'm in my mid-later 30's by now, 37 next month, and I just get tired from it all and spend my time on my work now and my friends and family, and reading books and writing things and traveling a bit when possible. Acceptance is hard when you haven't controlled your disease yet. And online forums and facebook groups are wonderful in terms of support and tips, but they can also show you the successes of others; success with treatments you might have already tried - and failed. It's hard to find acceptance and when I read back my old 20-something desperate forum posts I see hat most 'newbie's' have; fear, panic and searching for a solution, asap. No matter what it takes. It's hard to accept things that aren't normal, or right yet.