i have been suffering with CFS for two years and my main symptoms are severe exhaustion and heavy legs, but lately I have started to experience new symptoms of lightheadedness and foggy brain. I've had a full blood test done which has revealed nothing new apart from a low vitamin d level, for which I've been prescribed drops. I'm 58 and am unable to work due to this debilitating condition. Can anyone advise on supplements that might help?
Hi
one positive is to ask your gp to refer you to your nearest m.e./ CFS specialist most hospitals have one. They can assess you diagnose you and refer you to occupational therapist who are brilliant . There goal is to help you gradually recover ..
Thanks Sally. I have been referred to one of these and am due to join a self management group next week but I feel too ill to go at the moment, which is so frustrating
I had occupational therapists and they came to my home because I'm virtually bed ridden. You could ask them to do that?
Yes my husband has an OT who comes to our home too.
really helps ..
Dear Mary,
I am sorry foggy brain has been added to your troubles. That is so very unpleasant. Are you pushing yourself to do more (even if that more is pathetically small)? That is very counter productive. I found that whenever I overdid it there was a heavy price in exhaustion and brain power was always compromised.
For me brain fog is the worst symptom. I miss feeling the fresh air in the mornings, and it makes me feel as though I'm in an oppressive twighlight zone. Utterly horrible!
Herbs help but nothing I've tried actually relieves it fully, apart from sometimes drinking white wine, which makes me feel great for a while, then of course worse afterwards.
Hi Mary,
My symptoms are similar to yours, I'm currently waiting for a referral to the CFS specialist. Like yourself all my blood tests came back normal apart from Vitamin D! I was advised to take an over the counter supplement, which I got from boots!
Hope things improve for you!
Sarah
Have you been tested.for autoimmune thyroiditis .? Just because your thyroid tests come back normal does not mean you don't ha e some thing like hashimotos disease . Mine always normal for years than a doctor ignored results and went by symptoms amazing!!! I am still not 100% but glad of the improvement need specific tests or ultrasound but worth talking over with doctor .
No I've not been tested for autoimmune thyroiditis. I've never heard of it but it might be worth looking into, thank you.
Thank you Sara. It's frustrating isn't it? I felt ok for a while today and then I suddenly came over feeling ill again!
I sympathise with you George. Like you, I love fresh air and walking but haven't been able to have much of either lately. It's hard to get others to understand as there is nothing physical to see!
Sorry Georgia for calling you George!
I know exactly what you mean! It's horrible as you want to do things but you can't mange to and others don't understand! When you do try it completely wipes you out! As you said it's very frustrating!
I do push myself too hard sometimes George. Whenever I feel a bit stronger I tend to then do too much though I'm not aware that I'm doing it at the time!
I do feel for you being virtually bedridden Georgia. That must be truly awful. I hope that 2015 might be a good year for you and that your symptoms will improve. CFS is a really horrible condition.
Sorry i missed the 'h' off your name Sarah! At least this forum makes us know we're not alone!
Also the tests doctors do have scales of measurement telling them if something is ok or not and the range they use isn't broad.
I had blood tests for everything before I was diagnosed, and the tests said my liver was fine. But I went to a Naturopath in Harley St who did Vega testing on me and according to his tests my liver was not fine, and my heart was weak, which the doctor's tests didn't pick up on!
The range he used was wider.
Yes there is definitely a lot more to reading through tests. Trouble is I can't afford to see anyone private and I don't know how much my doctor will look further into things.
I couldn't afford it but I had mercury poisoning from my fillings and I had to get them taken out by a mercury free dentist. He did a few unemployed people for free. My mum paid the naturopath that did vega testing. I was very fortunate!
Mostly it's been finding out for myself about ME, as it is with most of us. Trial and error with diet, supplements and herbs etc. What works for us and what doesn't. Learning what works for other people has really helped me.