As anyone found anything that helps with the headaches ?
I would say that you’d be wise to have a word with your doctor if these are new for you, They may be related to any medicines that you are taking , or to something totally unrelated to the CFS that needs investigation.
It’s easy to assume that everything is related to the CFS and then miss other medical conditions if you’re not careful … 
Hi my Dr said its to do with cfs same as my knees. the meds if u been on them for a long time would not give you headaches.
if the headaches are at the back of your head…ice packs. 1 of the theories about CFS from Dr Raymond Perrin is lymphatic fluid drainage from the brain being blocked. One of the treatments is hot and cold packs on the back of the neck. It certainly helps me if i overdo things and i start to get the headache and accompanying brain fog.
Hi Christina,
The only thing that worked for me was acupuncture.
Mine are usually located in the left temple or across the forehead. In either case I rub some peppermint oil around the area. I’ve had them more often lately and notice that they can be related to the weather. I started getting half hour massages and during my most recent massage I had a headache. She gave me some CBD oil balm for my forehead and -boom!,- it was gone. Not sure if it was the massage or the CBD balm but OMG, I felt great!!! And slept better than usual that night.
What is it sorry please
CBD where can I get it from please
Make sure you are drinking enough as dehydration can also cause headaches.
My massage therapist gets it from somewhere so I don’t really know to tell you the truth but I’m seeing her Tuesday and i can find out.
hi guys
i have been to my Gp and he said it seem like tension headaches .
the pain / pressure is at the front of my head like a band
they gave me strong cocodamol wich helps for 30 m but i cant have that all the time 
i have been thinking about CBD if the are stress related headaches it might help.
i dont know im just getting really down with it now .
Can’t tell you how helpful this has been, Phil. I’ve been doing hot/cold packs on my headaches since reading this and it has worked a treat. Have you read Raymond Perrin’s book? Any good? I see also there are osteopaths trained in his technique, have you tried any osteopathy yourself? Thanks again!!
Hi Jo, I’m so glad it helped! I’ve read bits of the book - I heard it was getting updated so hadn’t actually owned it. I saw an osteopath for Perrin treatment in Bedford last year for about 7 months before I moved house - I felt that helped quite a bit. I’m now in Scotland where Perrin therapists are very thin on the ground but have started seeing an osteopath who has ME herself but doesn’t do the lymphatic massage - she focuses more on the cranial. However, she does have a masseur now to do the Perrin lymphatic massage and I have a 1st appointment with her tomorrow. If you have a Perrin specialist anywhere nearby I would definitely recommend. Not an easy, cheap or quick fix but after trying every supplement going and finding no help there, this does actually help me.
Thanks again, Phil
Really appreciate your long reply.
I’m glad to hear the osteopathy helped you before and hope the new masseur appointment is good too. I’d love to hear how it goes. I looked up Perrin trained osteopaths and my nearest is a half hour drive away. Its on the limit of what I can energetically tolerate, but I’m tempted to try.
Take care
Half an hour is pretty good going! I’ve always had to drive (or be driven) about 40 minutes. You might want to find someone to take you the first few times, the reaction can be quite strong and make you feel worse for a while. I’ll let you know how the massage goes.
That’s good advice, Phil. I haven’t booked yet - I’ve a few other things in my diary in the coming weeks and always struggle to figure what I will/won’t have the energy for. The joys of CFS! But it’s definitely on my to do list. Meantime, I’m still doing the heat/cold thing and it continues to be very therapeutic. Such a find! How did your massage go?
totally understand where you’re coming from. The massage went well…felt a bit like I’d been run over a few hours later but in a good way (i know that might not make much sense!). Blockage points were sore when she found them but not by the time she finished.
Body generally feels more relaxed and freed up but it does make you more tired for a while and I’m still feeling it. She wants to blitz it and do another later this week, so I won’t be doing too much until then!
Well done! That sounds great. Delighted you found someone who could help you like that. Keep me posted!
I have had CFS/ME for 7 yrs. but recently I started getting severe headaches. No over the counter pain or headache treatment worked or was more dangerous to take than reasonable for the result.
My Dr. prescribed Tramadol in 50mg. tabs. to be taken one every 8 hours. It works.
Hi Chris14silv,
Do you wear glasses? The reason I ask is that a couple of years ago, (I’d also had CFS for about ten years at that point), I started getting headaches that were becoming more regular and intense over a period of a couple of months. I went and had an eye test on recommendation from my wife (I’d never worn glasses up to that point) and found that I needed to wear glasses permanently. After a week or so of wearing them, the headaches stopped completely.