Do you have dizziness / light-headedness as one of your symptoms associated with CFS/ME? I had it a lot and for a long time. It stressed me out just having it, which made matters worse, because being stressed or anxious just brought it on even more.
The only thing that helped the dizziness was being horizontal, and sometimes even that didn’t help – it was like being drunk with the whole room spinning.
It was the most debilitating symptom for me.
One of the humorous parts of it was that unlike my old self who loved fast cars and cornering maneuvers, the CFS/ME version was more like a granny requiring smooth and steady chauffeuring in moving vehicles. Any sharp moves or speed would send me into a spin, very much like what it was like to be drunk in a jerkily driven taxi – not fun at all.
Well thankfully I’ve now got the dizziness fairly much under control. A couple of weekends ago I went to a small music festival not far from home. I was able to actually hang out with friends and camp the night. Was really great and something I’ve missed.
Here is a short video about what I think has really helped to get the dizziness under control and what I did to make the festival trip manageable.
Tags: Recovery Treatments Turning Point vlog
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Are you still dealing with dizziness or did this make it go away for good? I have it for one year now, and you know how hard it is. I am working with a naturopath and an acupuncturist. If these don’t work, I will start to bulk up on vit. C.
If vitamin C worked for you, then your problem is clearly related to oxidative stress. I personally believe that CFS (as well as every other disease) has different causes (including chronic inflammation, oxidative stress, toxicity, stress response chronically on or infections). Finding the core reason is the hardest, you did it congrats!
Hi there, No I don’t have the dizziness anymore – thank goodness. Yes, I think it is very hard to find the core reason. I found that I was just doing everything I could to live a healthy balanced life and I’ve had to continue doing that. Now things are good though. I think in some ways I just had to grow up and learn how to not burn the candle at both ends! I hope you are doing better now than when you messaged me. I’m sorry, I’ve been terrible at responding. All the best.
I don’t know if what I have is cfs… I’m always dizzy… 24hrs 7days for the last 2 years (I have a two yr old and a 5 yr old and work from home… so I can’t have many naps even though I desperately want to) I’m tired though and even after having a sleep I am still desperately tired… have had mris and ct scans and blood tests and have all come back with a big nothing… you must have migraines…. but I’m considering chronic fatigue because I’m just so achingly tired… I’m not always sleeping because I can’t… anyway after that minor vent I just wanted to let you know that you have given me a little bit of hope in regards to the dizziness.
I feel like this must just be my life now… this unrelenting off kilter and untethered feeling… it’s so depressing because there isn’t any option other than put up with it and fruitlessly try to search for answers myself.
Have felt like I mustn’t have very long left which has been a little confronting and trying to keep positive is so hard when every morning you wake up and it’s still spinning but you have to pretend as best you can and look after your babies 😭 Has been the toughest and most lonely and isolating thing I have faced yet…
But I’m booking myself to a naturopath! Thankyou so much for the advice! Even if it’s not cfs.. it’s something that might help me and it’s nice to know I’m not alone
Hi Emma, I really hope you are feeling heaps better now. I’m sorry for my massive delay in responding. I’m not very good at getting on my site anymore. I totally understand how you were feeling when you wrote your comment. I felt like that as well. I just found that once I stopped expecting to feel heaps better I started to get more relaxed with where I was at and focused just on the little things I could do that made me feel better in that moment – like the yoga, meditation, small walks, small gardening attempts 🙂 Reading – sometimes just from big picture books such as architecture etc. Just the little things that I could do. Not putting pressure on myself I think made a big difference and slowly over time I improved. Now – well now, I’m heaps better and it has been years since I’ve felt any symptoms. But I still take good care of myself now and rest when my body needs it. Hope you are in a better place now. Mel
That picture (above) is so apropos of how I usually feel. Thanks for the info!
Thanks Luci, appreciate your comment 🙂
G’day Mel. I just came across this website from Joe’s website. This is so relevant to me as it seems to be my worst enemy over the past few years.
I had glandular fever about 8 years ago when i was 18 and i am now 26 years old. I can ride my mountain bike for example with no problems, but I will experience severe head spins and dizziness as a consequence of doing so!
I now have a 20mth old son who is the world to me but this issue is constantly ruining how much attention and energy I can give him. It’s now starting to affect my performance at work however they’ve been very understanding and I’ve recently had a few days off to rest.
Great video and thank you for sharing. Any chance you can write out exactly what the products were and from where? I hope this helps me in some way.
All the best! Matt
Hi Matt,
How are things going for you now? Its a lot to manage health, work and a young child. Wow. Good on you. I can’t imagine how it would be trying to juggle the health thing with a child as well, but you are not alone and all I can say is to give yourself the time you need when you need it. I’m not sure a list of what I’ve taken would help you out so much. If you can manage to I’d be talking to a naturopath and getting some accupuncture as well. I took a lot of things but under the direction of a naturopath who worked on me from the ground up so to speak – starting with the digestion. Actually, I think I could do with some refocusing at the moment starting from the ground up again. My energy is going ok but I’ve noticed my bad habits are slipping right back in there and the maintenance is very important.
Let me know how things are going.
Mel
awesome site! I just found it!
Thanks heaps Sipora! Totally love approving these types of comments! 🙂
Hi Mel,
I just watched your Green Girl video and I am so pleased to see that you managed to get away for the weekend with your friends, this was a great achievement and you look great. I am very glad you are finally getting rid of the dizziness, it is the most frightening thing to cope with. More power to you AM
Thanks for the words of support AM!
Enjoyed your video – very sensible advice. I too am affected by dizziness with my CFS and manage it by balancing activity with rest. I try to do the things I have to do in the morning and then spend the afternoon on my bed before preparing dinner for the family and then it’s back to bed. Of course this is not always possible with the pressures of family life (I have aged parents, grown children – one also has CFS – and a grandchild. Like you, I really need time alone so I can recharge. Fortunuately I have a very supportive husband who prepares meals, etc. when I just can’t push myself any further.
Hi Sandra,
Thanks for your comment! Sounds like you have a pretty hefty load to cope with on top of the CFS, and also to have a child with it as well wow, sounds like you are quite a survivor. Good on hubby for being supportive! How is your child coping with the CFS?
My son copes with it fairly well. He is trying different things and working out what works for him in an attempt to improve his health.
I just read your self pacing article and could relate to so much of it.
In the early days of CFS I found sitting very tiring. I could do things on a laptop in a semi-reclined position in bed that I couldn’t do sitting up at a desk. When my health improved I was able to go back to sitting up at a desk – quite a momentous achievement for me!
I have recently begun going for short walks and lengthening them slightly each day. It is working well for me and I am actually enjoying the walks.
I love knitting and crocheting and I have discovered that these things take far more energy than you would think. I have to be careful to pace myself or I pay the price the next day.
When I push myself too far with various activities I now find it takes me fewer days to recover whereas in the earlier days it would take several weeks, if not months.
In the psychological area I found that when my health began to improve and I could do more things, I was very grateful for being so much better. I thought that if it was as good as I got I would be happy with that. My health plateaued at that level and after about 18 months I began to feel frustrated, wanting to do more and feeling a bit resentful that I was limited in what I could do. I am now working at just appreciating how far I’ve come. The walking is helping.
Thanks Sandra, I can totally relate to many of your comments there. I’m also really happy that I now don’t go down as much when I do overdo it and the recovery takes less days now than it use to. So I’m totally thankful for that. I do I guess wonder about the plateau though, but I’m holding strong to the overall trajectory being ever on the increase, thus why I like to focus on other people that have recovered. I’m coming across a lot of information about the emotional and spiritual healing being a major part of the process needed to totally overcome the CFS/ME and for some people that appears to be one of the final things to overcome. Any thoughts on this?
I think the psychological aspects are really important. I think acceptance is a big part of recovery – accepting that this is how your life is at present, that you have to pace yourself and work out what works for you. Depression and/or anxiety can be a problem for a lot of CFS sufferers so it’s important to manage those issues. Meditation/relaxation is very helpful. I find it helpful to be mindful of where I was a few years ago compared to where I am now so that I don’t lose sight of my progress. Doing things I really enjoy (at the expense of housework, etc) is absolutely essential for me.
Great advice Sandra, thanks heaps for your thoughts. It’s great to hear how others are managing and what works for you. Yes, its hard with this illness in that it does seem to take a while to really improve and yes I think looking back over longer periods is necessary to notice that there has been an improvement. I know that’s not always the case for everyone though. Some people do actually get worse with time, but I’ve read that the majority of people do get slowly better with time and management.