Finally got a referral to the cfs clinic....

Hang in there richard I sympathise with you it sounds all to familiar just rest as much as possible whatever you do don't try and push through fatigue.

Gps unfortunately don't seem to be as clued up as they should be earlier diagnosis can be of help it's normally the case it's prob average time to wait 2 years I did I kinda new I had it before start have you tryed any supplements vit d vit b complex may help I also use magnesium to calm the muscle pain spray and tabs it helps good luck with things it does feel a relief to be told what you have I thought I was going mad at times with all the symptoms

Hi Richard, I've been off since May, you try to explain it to HR! And I work for the NHS!

After all the antibiotics you've been taking in all the tests you've had done, do you know what your Vitamin B12 level was?

Vitamin b12 deficiency is found among people who take Remeron, (mitazipine).

Vitamins D and B12 are both only sourced naturally from foods such as red meats, fish, seafoods, poultry, eggs and dairy produce so if you are deficient in the one you are likely to be deficient in both.

I'm so pleased you are getting somewhere. I too started with glandular fever and got multiple infections. Well done you for standing up for yourself. Management of this illness is key so get as educated as you can and fast. Be kind to yourself and if you need us we will I'm sure be here.

Paz

Hi Richard,

Are you being given any medication for your low vitamin d and folic acid? Balancing vitamin intake seems to help many people on the site.

Hopefully with the referral will come some help and guidance in managing symptoms. Re the brain fog, memory etc. I know how difficult that stuff can be and I too have a family and find it hard not to be the mum I was before all this. The balance of rest and activity is key with this condition and like Russ mentions, don't try to push through it.

Beverley

Hi Richardowenplc;  I agree with what the others have  said, and do feel that if oral supplements do not get absorbed into your system (ie the Vit D and Folic Acid), it may help if you can be referrred to  a specialist who will administer iron and Vitamin D via Intravenous method/Intra-muscular injections??  this was always the way for those who had problems with absorption. Also, even though we eat a Normal and Healthy diet, if we have a mal-absorption issue, then no matter how much meat/greens etc that we eat, it will not be effective. The other issue is that, for some reason, those of us who have CFS/Fibro, do have a problem with our body cells breaking down these essential nutrients, needed for strenth and energy.

 

​I was also going to suggest that perhaps you may also benefit from taking Melatonin supplements (there are only some brands that help with CFS); or try drinking Cherry Juice, as this is also high in Melatonin.  It has been found that we are lacking in the normal production of Melatonin, which is needed for Restorative Sleep (taking us through the REM stage of sleep).  We need this to wake up refreshed in the morning (no Brain Fog etc).  If you would like to know  the brand that I have been taking for over 12 months, with a lot of success, please Private Message me and I will give you my answer.

Good luck with your new doctor, and keep in touch with your progress.    Bron

Hi Richard, my CFS started with glandular fever too and like you I had to change doctor to get a diagnosis and help. I'm so glad you've finally managed to get a doctor to take you seriously. It might be worth trying to take a probiotic supplement as you have taken a lot of antibiotics they wipe out all the good bacteria from your system as well as the bad. You could also try taking good quality multivitamin supplement which contains vit D and folic acid every day to top up your diet. I find that antibiotics always make me feel a lot worse so it might be worth trying to avoid them unless absolutely necessary. Sometimes there are natural remedies you could use instead. Hope you now get all the support you need. It might be worth letting your family read the stories on this forum too as it can be difficult for others to understand this strange illness. You are not alone!