Hi! Welcome to the site. I saw on another post you commented on that you're from Victoria. I grew up in Horsham myself and lived in Melbourne for 9 years as well, though I'm now in Adelaide. I'm glad you've managed to find a local support group. I never got that far. Nowadays I find that an online group is the only one practical one for me, since I'm pretty much housebound.

On the subject of headaches, I used to have a lot of trouble, but they turned out to be caused by my neck rather than my CFS. It took a long time for me to realise the difference and separate out the two but then very little was known about this disease back then. It has also taken a long time to learn to manage each condition. My neck problems stem from an old whiplash injury and managing it involves posture - particularly when I'm seated (which I am most of the time these days) - and having found a really good chiropractor/osteopath.

Managing CFS is basically learning to manage your activity level so that it never exceeds your energy level. If you overdo it, you end up crashing and although you generally recover with rest (as in weeks or months of it, not just hours) you seldom return to quite as good as you were before.

As for treatments, that is a highly individual thing which often also depends on any other conditions you might have as well. For some reason, very few of us seem to suffer from just the one thing. For me, although the doctors all assure me I don't have thyroid problems, I find that I need to stay warm all the time or I start to get worse. Keeping my spine in good condition helps too, as does eating healthy. Good quality sleep is also essential and a sleep study is helpful in this respect. Some people find certain supplements helpful and others avoiding particular types of foods I'm sure others will tell you which ones work for them.

I usually try to avoid leaving long comments, firstly because it's hard to concentrate long enough to write one and secondly because some days I can hardly read the long ones, but I hope this might have been at least a little helpful.

Hi SophieKate, it is nice to meet you & welcome to the forum. Like cmiat I don't have the energy to make it to a support group, maybe if they came to my house I could attend, lol. I am happy you found one in your area & I hope you can continue to attend.

I pretty much pace myself in everything I do, I live a very sedentary life & rest before having to do anything that takes a lot of energy. Sleep helps a lot but it has to be good sleep & long sleep or I don't get anything out of it. I take two meds to help me go to sleep & to help me stay asleep, otherwise, I have insomnia really bad. No sleep equals large crashes for me.

I have never had headaches with CFS/ME so I am unable to help you with this. I am sorry that there is very little advice I can give you. This is a very unforgiving illness so I live one day at a time. I try not to make plans or I should say very few, I am mostly housebound. I am glad you found us & hope you will keep posting. We have just come through an upgrade to this new site & are all still trying to find our way around it. It is not really user-friendly so I hope you will take the time to learn how to navigate it. Hugs, Denise

Hello, dear. Welcome! I got ME/CFS as a young person (16) as well. So, I feel your pain. I find it's really important to stay hydrated. The headaches could be tiredness or lack of blood flow to your brain. If it is the latter, it's good to get your feet up so that some of that blood can go back up to your head. Standing too long can really make it worse. Pacing is important. Really understand your limitations and try to live within them. It's hard when you are young because there is so much to be done, but you may need to take life at a slower, more mindful pace. We are here for you. Please friend some people on the site and read some journals that people write. You can write your journals too and then people you are friends with will comment on them. We are so blessed to have you. Smiles.

Hello, and welcome!

I have had a headache every day since day one of being diagnosed with CFS. They are not severe headaches, but they occur daily. Tylenol will take them away.

As was mentioned before, reading for long periods of time, lengthy time spent on the computer, even tedious phone conversations can make the headache worse.

I find do that keeping hydrated, avoiding loud, noisy places, and good rest help me get through the day without too much headache pain.

It is important to be sure that a sinus infectionion is not the the root of your problem!

This illness is difficult to navigate because we all have varied symptoms . We are here to help you out, so keep posting. It's a good group! xo

Wow, thank you so much! I appreciate the time that you took to respond to my message. Also thank you all for the nice words and suggestions. I hope the best for you all!

Hello SophieKate, I'm sorry that you have developed this illness so early in your life. I really hope you can find some treatments that will work for you. Every person is so different as to their symptoms and what works. I became ill when I was 21 and in a couple years had to switch to part-time work even though that was extremely difficult for me. Since then, I've gotten married and was able to have one child but was unable to work outside of my home. If I want to go anywhere then I have to make sure that I stay home the day before and get lots of rest and sleep. This applies if I just need to see my doctor. I learned to pace myself after being extremely disappointed about having to miss things like friends' weddings etc. I've fortunately never had to deal with headaches. I read something really easy and helpful about how to prevent headaches just the other day. But for the life of me I can't remember it. It could be because now I'm a senior (age 67) and my memory is going a bit. Also, I found with the CFS that it affected my memory a lot and to my dismay suddenly couldn't remember the names for very common things or even the names of my best friends sometimes. It always did come back to me but too late to be helpful at that moment! You learn that it really helps to have a sense of humor and just laugh at your mistakes. After all pretty well everyone else does! ha ha joke. I sure wish you the best and I hope this site will help you. We are very happy to have you join us. I am pretty new here myself and trying to figure out all the ways of using the site :D

Hello, I'm new here too. I use prescription Topomax for headaches. I take 100 mg daily, 50 in the morning and 50 at night. I also use CBD oil, you can buy it on the internet. I was told not to use otc meds like Tylenol too often, it can cause its own problems. I also think it's important not to allow yourself to get too cold or too hot. Good luck!