What's worked for me

Hi! My name is Nicole and I am 18 years old. I was diagnosed when I was 15, but I have been displaying symptoms since at least the age of 10. I am currently medication free and I would like to share what has worked for me and learned what has worked for you!

This is going to be a long post, so hang in there with me.

Shortly after I was diagnosed, my doctor sent me to pain rehabilitation center. While I was there I learned this thing that they called "Bio-Feedback". Basically it is meditation. The instructor (doctor? i don't remember her credentials) would put on either a guided imagery track or calming music (listen to pandora's yoga station, its the same music). Then you either recline as comfortably as possible or sit with your legs crossed with your back straight. (The second is harder because of back pain. It's taken me a long time to get to where I can sit like that for long.) While you listen to the tape, try to slow your breathing as much as possible. Take deep breaths: in through your nose, out through your mouth. Focus on your breathing or the tempo of the music. The point is to bring your heart rate down. I use this if I'm having trouble sleeping or if the pain is bad. Because we are in pain all the time, our heart rates are a lot higher than they should be. Lowering your heart rate brings down stress levels and in turn, pain.

A lot of people discount the "Bio-Feedback" because it sounds too holistic for them, but I really think it is probably one of the reasons I feel so much better than I did two years ago. The best time to do the meditation is when you feel a flare-up or pain starting. Slowing your heart rate down asap will definitely help.

Another thing I did was start an activity journal. Every half an hour I recorded what I did, what I ate, what medications I took and my pain levels. I did this for a week. You'll start to see patterns emerging. I would then avoid the activities, food or medication that would coincide with the pain. After a week you record every hour and half, then week three you record every three hours, etc. It takes a lot of work, and if you are super busy (ie work or school) start with every hour. Record it on your phone or a notebook

Posture. This one was really hard for me to accomplish. To correct my posture, I would set a timer for 5 minutes and complete a task while being very focused on sitting or standing straight. Have someone (or even your phone) remind you at irregular intervals during the day to sit up straight. I took me about two weeks of being reminded for it to become habit.

I go to the gym when I can, but really all I can do is the stationary bike. Treadmills kill my knees and I have to be super careful with weights. I usually avoid weights unless I have a trainer working with me (but who can afford that?).

I try to eat heathy, but I fail at this quite a bit. I'm eighteen and none of my friends are health conscience so I fall under their peer pressure to eat junk way too often. I do say hydrated though. Dehydration is one of my worst pain triggers.

I am currently medication free, but it is mostly because I am either allergic or suffer from sever side effects from all of the medications I've tried. I do have youth on my side though. It is still a horrible, daily struggle with pain and I am always looking for new tricks to try.

Aww you're so young, but you're very positive and open-minded and that will help you more than many things. I found that self-help meditations are good They take a while to get going but its a great way to deal with the pain. There's lots of alternative therapies that are good to try too.

I struggle to cope with the FMS esp the insomnia and pain (one problem makes the other worse, and so on), and at the mo I have amitryptiline at night. I don't have any pain medication at present that works but I will hopefully get some real help soon. (Fingers are permanently crossed with this issue).

A positive attitude and a good sense of humour really does help, although we may have to "fake it" at times, just to pull ourselves through hard times.

Best of luck with dealing with this illness. Never give up and keep trying. Something WILL work for you.


They had some fancy machine I used at the pain center, but in reality all you need to do is find and record your heart rate before and after the meditation.

Hi JNicole. I'm very impressed with your program. These are all healthy lifestyle choices and I can see where they would help to ease symptoms. The bio-feedback sounds extremely interesting. I think being able to control some parts of your mis-firing body would be very exhilirating, especially if it helps to calm you/slow things down/relieve the pain.

I have to laugh because we get quacks who come on the board rather frequently who try to sell their "cures" to those who are desperate, and then along comes you, someone who has taken an active approach to helping yourself at quite a young age. You put them to shame.

Thank you for sharing what works for you. Both you and Josephina show a remarkable amount of determination and will-power. It's very pleasant to read what you've both done to help yourselves. Nice job, ladies!


Here is a web MD link to this treatment. I have heard of it before, not sure where it is offered. Not sure if it is alternative, guess so!