A special thanks to Somebody Heal Me for including this post as part of their Headache Blog Carnival.
One of the symptoms of CFS I have been unable to manage are the CFS headaches. CFS headaches are not like a normal headache, but they aren’t quite a migraine either. They can take turn into migraines at times but mainly it is the type of pain that is hard to describe.
I have headaches all day every day regardless of taking pain medication. The pain medication allows me to at least be able to function but there are days when the headaches still manage to take over. The pain is sharp and my eyes hurt so bad it’s impossible to turn on the light.
The pain in my head since last night has been frighteningly bad and as long as I lie still, keep my eyes shut and don’t move around I can tolerate the pain. It just seems lately that everything is falling apart around me regarding my CFS. I will go long periods of time where even though I have relapses I can still function somewhat. Now I’m going through a spell for quite a while where just doing something simple like typing this post is taking every drop of energy I have.
The CFS headache is also one that leaves you with a feeling of being outside your body, looking in. I know that sounds weird, but I don’t know how else to describe it. When my head hurts this bad it is as though someone else is living my life. The minutes and hours blend together and don’t seem real. Everything is like a blur I guess.
Share your CFS headache experiences and let me know if you deal with anything similar.
That sounds horrible! I had a difficult time with headaches and migraines about 6months ago. I still get them from time to time but its only every few weeks. When they were bad I was having migraine every 2 or 3 days with headaches between. I think the huge improvement is down to a better diet. I gave up sugar, wheat and dairy, try to eat mostly organic, fresh, non-processed food and loads of veg and fruit! Of course I can’t be sure thats what it was but I feel like it might be, because whenever i splash out a bit and eat more sugar than usual I do start to get headaches again.
I also use an Imigran (sumitriptan) nasal spray for the migraines which definately helps reduce the intensity, maybe you could ask your doctor about that.
Hi, I was told I had CFS in 1997, and have recently being suffering big time, it started up when I got out of bed at 2am end of Jan this year and passed out. Then last week I woke up about 2am and it felt like some one had put a hand in either side of my skull and was gripping my brain, I have had a headache for over a week now.
I have a great deal of sympathy for my fellow sufferers, but be sure, you are not alone.
Hi! I was diagnosed w/ CFS in 1997 and cluster headaches in 1999. After a time I started getting daily headaches as well. They vary from the cluster, to migraine, to I just don’t know what. I have been taking fiorecet daily for 10 years. I had never been told of a connection between the CFS and the headaches. I always seem to be learning more and more.
My doc also thinks I may have Fibro which seems to manifest mostly in my neck and shoulder area. I wonder about that effect on the headaches as well.
I hope you are able to find some answers
Hello everyone,
I’ve been fighting fibro since age 4, I am now 42, however did not get a diagnoses until 8 years ago. This horrible disease has affected every aspect of my life. I think the worst thing I enocuntered was the judgement and name calling I received from the doctors telling me to seek psychological or drug treatment for the “fake symptoms’ I was dreaming up. To all of you suffering, you are not alone, or crazy. Keep fighting for your life, even if your only goal is to live it comforably, as that is the point I have reached as the damage was already done. The secondary symptoms pop up every 4- 8 weeks because my immune system is shot. I force myself to exercise and stretch daily, as they do help tremendously. But the rest, just keeps coming. My main concern of late, everything happening is contained to the right side of my body only. Hernia, cysts, headaches, so off for more tests I go. Good luck to all.
I also have a headache 24/7 that at least feels like my brain is too large for my skull. At the worst, it is all over combined with a migraine. I have had migraines since I was nine so it is easy to differenciate between them and the CFS ones. However, what no one has mentioned is the ice pick stabs that occur in my head. These can be had with migraines, but I have not had them before. These started about two years ago. I’ve had the CFS for 35 years. My memory is badly effected as well. Is anyone else having these ice pick stabbing pains, too.
I have those ice pick stabs in random places in my head. I have been taking Topamax but recently quit due to my liver enzymes being out of whack. The migraines came back with a vengeance.
I have these same kind of headaches only it feels like my brain is on fire. No relief.
With my CFS headaches I get a constant pressure headache, a pain right in the middle of my head that dominates my entire existence, a vice like headache grasping the back of my head, or a severe burning sensation that feels like a river of nerves are on fire in my brain. This is at it’s worst. My initial bout with CFS lasted 2 years starting in 1987. I go through periods of feeling great, but out of the blue I relapse bad which usually lasts about 3 months. The bad relapses can come on once a year, or not for a few years. Milder relapses last a week or two.
When these relapse headaches and fatigue occur, I always think they will never go away, but eventually they do. I rest, eat right, and don’t overdo. But I do force myself to exercise, which helps. (weight lifting, bike riding, treadmill type machines.) It raises stuff in your brain which helps with pain. With headaches at their very worse I have taken Vicodin or Darvocet, which helps, but may make you spacey, and they can also be addictive, so only take when really needed. I have not tried Tramadol for pain, but I hear it has less addictive qualities. Trying to keep your mind off the pain helps also, by interacting with people, or relaxing and focusing on a good movie or funny show, and soothing music and relaxation can help as well. Also try to avoid stressful situations. Hope this helps.
I’ve had cfs and fibro for 14 years. I’m 29 now. I have pain all over, crippling fatigue, fevers, hot flashes, chills, but the worst is daily headaches and frequent migraines. I’m on disability and take a lot of different meds. Has anyone had any relief for these awful headaches and what kind of dr helps? I’ve tried neurologists, pain doctors, homeopathic docs, internists, and more. I need some relief!
Hi stacey
Try very high dose of vit B injections.
Big hug and stay strong.
Sarah
Hi Stacey, I wish I had an answer for you on the headache. I have struggled with this myself for a long time. I see a neurologist and he has me on a medication right now that I inject whenever I get a migraine.
I have been suffering with CFS headaches, that often are 12/7 and do not respond to any pain relief rx’s. I can even get multiple types of headaches at the same time. The pain is mostly towards the top of my head. I believe any supplements and persciptions i was taking trigered these headaches. I cant get any relief from them. I have them during my sleep and wake up feeling out of sorts, to say the least. They are interfering with my daily activities, working, taking care of myself, my pets and my house. I call these headaches…coma headaches. I do best not to make decisions, drive or deal with people when I am like this. I am on a Medcaid PPO and I am having difficulty getting the treatment I need because most doctors, good doctors or the ones I need, dont participate in this health coverage. I am searching for doctors, and while I want them to be at the top of their speciality, they dont take my insurance. I am not depressed, but, feeling hopeless or not having enough energy to fight the system is making this all a terrible unending nightmare.
Can anyone help me P L E A S E?
Hi, I have had M.E / CFS since I was around 15 and now I’m 25. I am getting really sick and tired of feeling so useless, everything I do takes that much effort and it hurts. I have been suffering from really bad headaches for the past 4 days. They make me feel really tired, grouchy and I find myself snapping at people. My brain feels as though it is loose in my head, with every movement it bangs and sends a shooting pain right across the front of my head. It makes me want to close my eyes, I hate it. I don’t trust myself driving when I feel like this, I hate been stuck in the house. I want to do things but it hurts so bad.
I have recently found out that I have very low blood pressure which makes me collapse, so now I have to take tables for that. I went through a really bad patch where I kept passing out and stopped breathing. I had to go for a tilt test, where they found out about my blood pressure.
I wish I was normal and could live a normal life, where you can plan things.
Sorry for going on. Thanks for listening.
In 2009 I became ill with aching muscles, joint pain, tiredness and headaches which were made worse by exercise. After 12 months of being unwell I got a diagnosis by excluding other possible causes of ME/CFS. I had to quit university and move back home with my parents and also change my doctors in December 2010. At the new doctors I was sent to see a neurologist who said the diagnosis of ME/CFS would be the very last thing he would diagnose and diagnoses my ill health as chronic migraines to my surprise. He suggested that withdrawing from regular painkillers, reducing caffeine intake (including chocolate) because these can prolong headaches all of which I had been increasingly having due to the diagnosis of ME/CFS. I am now on epilepsy medication which seems to be working. I believe a lot of people do suffer with ME/CFS as I thought I did however its worth getting as many medical opinions as possible and reducing caffeine and painkillers which make headaches worse even for people with ME/CFS. Best wishes.
Thanks for the description of feeling like you are outside your body looking in. I have felt like that even without the headaches since I was a child and had my first migraine at about five years old, I remember it like it was yesterday.
I went through a time of feeling sick and not quite “there” after having my first son especially when passing freezers in areas with strip lighting but put it down to having had a baby.
I was diagnosed with ME/CFS recently but told I could have had anywhere between four and twelve years, headaches were not considered one of my main criteria because they were not of new onset – I’d always had them. Now when I get headaches they vary from a thuddy heaviness to a sinus type blockage to a full blown migraine squeezing the muscles in the nape of my neck and can wake me up. I cannot take Ibuprofen as they give me the shakes so I now take only co-codamol (tramadol never worked for me they gave me headaches – what a great side effect!!!!).
If it gets really bad I will take a valium just to relax the muscles at the back of my head, so far this has worked, but as they are EXTREMELY addictive I would not recommend them unless under supervision, I only take the smallest dose and ONLY when nothing else works.
If the migraine lasts longer than a day I would be back at the doctor’s. More recently, when I get certain types of headache I also feel nauseous so it’s a risk taking anything – it might end up down the toilet anyway.
I have had CFS for six years now and when I get headaches, they are very severe. I noticed lately that since I have been on oxygen, the headaches are only mild when I do get them. I used to wake up with raging headaches, nothing could cure them . A few days ago my oxygen fell off during the night and guess what? My raging headache was back! I put on the oxygen, and within about twenty minutes my headache was gone. I had not thought about having few headaches until then, I have been on o2 since Jan. does anyone else wake up with their headache or do they just occur during the day?
Thank you all for sharing your stories, it is rather comforting to know we are not alone and can draw strength & encouragement from our mutual experiences of living with ME/CFS. My headaches are also excruciating and obliterate my life when the occur. The are usually accompanied with the muscles in my back,neck & shoulders contracting into spasms. It feels as if I have been coshed in the base of my skull and my brains are going to spill out via my temples and eye sockets. I become nauseous & off balance, as though I was drunk, hungover + seasick all at once. However I have found some respite in managing the headaches & fibro body pain by opting to follow an alternative approach. I have cut refine sugar out of my diet completely – as it is pure poison. Also reduced all dairy & gluten to an absolute minimum. Each morning I drink a mixture of brewed Sutherlandia (an adaptogenic tonic), tsp of sodium bicarb (keeps system alkaline), and 1/2 tsp of cayenne pepper & tumeric (reduces inflamation) in a glass of water. This has helped me tremendously. Also rubbing cayenne pepper mixed in vaseline on my temples and up my neck has also provided relief when a headache is in progress. On the tradtional medical side, when the pain becomes too unbearable, I take Nerotin & Tramodol, this works for me but I dont like going the drug route. Hope this info might help one of you fellow sufferers out there. Stay strong and God bless.
Thank you all for sharing your stories, it is rather comforting to know we are not alone and can draw strength & encouragement from our mutual experiences of living with ME/CFS. My headaches are also excruciating and obliterate my life when they occur. They are usually accompanied with the muscles in my back,neck & shoulders contracting into spasms. It feels as if I have been coshed in the base of my skull and my brains are going to spill out via my temples and eye sockets. I become nauseous & off balance, as though I was drunk, mugged, hungover + seasick all at once. However I have found some respite in managing the headaches & fibro body pain by opting to follow an alternative approach. I have cut refine sugar out of my diet completely – as it is pure poison. Also reduced all dairy & gluten to an absolute minimum. Each morning I drink a mixture of brewed Sutherlandia (an adaptogenic tonic), tsp of sodium bicarb (keeps system alkaline), and 1/2 tsp of cayenne pepper & tumeric (reduces inflamation) in a glass of water. This has helped me tremendously. Also rubbing cayenne pepper mixed in vaseline on my temples and up my neck has also provided some relief when a headache is in progress. On the tradtional medical side, when the pain becomes too unbearable, I take Nerotin & Tramodol, this works for me but I dont like going the drug route. Hope this info might help one of you fellow sufferers out there. Stay strong and God bless.