new and confused CFS Patient

Are you allowed to take vitamin supplements? B vitamins would be a start.  Brewers yeast mixed with water tastes horrible but is a source of b vitamins.  Otherwise try tablets as long as the Dr is permitting.

Richard

Hi Maggie,

I'm 10 months into being unwell. Got my CFS diagnosis about August, it was initially post viral fatigue. Prior to this i was a marathon runner and triathlete 8+years. And at a good level. I was always conscious of my diet etc I did have a physical warehouse job for the past 2 years prior to my illness so the possibility is high i have 'burnt out'. I saw the infectious disease guy today who is testing me for toxoplasmosis as an outside shot, he does think i may have CFS with no known cause other than a viral assault in the beginning. I've spent about £3000 on tests etc My adrenals (DHEA) was low, i did the 24hr saliva test. Cortisol was ok. Maybe do that, it's easy and only about 80quid, I feel i have been tested for everything. It can be quite demoralising with no real co-ordinate. I am scheduled to have cognitive behavioural therapy and graded exercise therapy. I'll give it a go. I think after researching this 10months almost full-time as i have lost my job is that for many of us who were very activie it is some form of burnout. The ADRENAL GLANDS feature heavilly in this. There is a book you might want to buy called 'Adrenal Fatigue' the 21st Century Stress syndrome. I tick so many of the boxes. I've not committed to the programme yet but once all the tests are out the way i will. I notice if i try some adrenal specific herbals formulations i can feel better. Maybe give adrenal formula a try, and combine with eleuthero. High dose vit c helped me. For IBS i strongly recommend you do try SYMPROVE. It's been shown in studies to be helpful with IBS. B12 deficiency can contribute to CFS. You should try a sublingual B12 (methylcobalamin) supplement, possibly combine with a special form of folate called metafolin. Their is a methylation treatment for people with CFS but i've yet to try this. I did 3 months of chinese medicine but this didn't have any benefit. Definetely look into using some herbs and see how you go. Cordyceps, rhodiola, schisandra etc for a quick boost. How was your white blood cell count ?

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sorry I can't help much but maybe youll feel better soon. all the best

Richard

Hi Maggie

I started the same way as you did.  I was going to the gym and doing weights at lunch and then training for a marathon in the evenings.  Around the same time I got a virus and my body said enough was enough and so the start of my CFS began.  The first few months were terrible as I didnt know what was wrong.  The dr's thought it was anxiety or depression but I knew it wasnt and they said to carry on with the exercise as it would help!  But this was making things worse.

After several visits and bloods I was finally diagnosed last September. 

I also had, and still have, problems with my hearing (tinitus).  I had problems with talking and finding the right words, balance issues and obviously the exhaustion.

I spent hours on the internet looking for advice, cures and explanations about what was wrong with me but its an absolute minefield - everyone is just so different.

I'm only in to a year of my sentance (however long it will be I dont know) so I consider myself a newbie but these things have helped me :

If you have a good day don't over do it.  I've done this many a time and suffered.

Listen to your body and try to pace yourself

I talked to my employers and they've allowed me to work flexable hours so I can leave early and relax more in the evenings.

Anti-depressants - I didnt want to but I've found taking sertraline help with the symptoms.  I dont know how but they've helped

I take cod liver oil, magnesium and a multi vitamin

A month or so ago I had a holiday in egypt and after a few days I felt like a normal person - I was sceptical that relaxation would work but it definately did.  I was even drinking cocktails and staying up past 10pm !  Crazy talk for me

Bed time - stick to a routine. Same time, same position, total darkness - no sleeping pills, I tried them and they made me worse and set me back.

I found the first few months the worse - once I got over them I understood my body more. Ive had a couple of miserable relapses that knocked me back to remind me I've far from well and to watch myself.

I hope you find some answers as I know its a horrible and lonely thing to deal with

Jimmy :-)

The best advice I can give is rest and pacing yourself. Otherwise, you can get into a push/crash cycle. Your onset is so typical--same as mine. I started with a virus, and the symptoms never went away. I was going to the gym regularly and working out and was a very active person. This, again, is so typical. 

Hopefully you're body just needs time to recover after having to deal with a virus. For people who have been ill less long, the prognosis is better, but unfortunately, we don't really know what improves chances of recovery. Would your employers be willing to let you move to part time for a while? Giving yourself more freedom to relax and do what you want in the moment seems to be useful for a range of illnesses, and letting one's body recover, so if you feel work is wearing you down, it could be helpful to have less of it - but some people like working and feel odd without it. Hope you start to pick up soon.

Hi Maggie, you will probably have a lot of toxins running around in your body at the moment which need to be cleared away to have good cellular health again. I found a good plan to follow by Frank Lipman in his book 'Spent'- its brilliant. I initially thought I had burn out (working major stressful full time and overtime job, multiple sinus infections, gym 3 times a week and walking to walk 1.5hrs every day before I collapsed). So, I started to follow the plan in Frank Lipmans book. After 5 weeks I started to notice I had more energy I was up and about more (certainy not bedbound). You could also look at the alkaline diet too. I have had CFS/M.E 2 years now- 1 year diagnosed and I am improving through eating well (healthy foods), avoiding stress and pacing using a points system which works. Hang in there- its a shock at first as its such a change from where you were, but things will improve for you xx

....forgot to say the book is also known as 'Revive' by Frank Lipman - same book different title/publishing date (got them both form the library) xx

Hi maggie,

Much like everyone on here, I was over-achieving and got hit by a virus (glandular fever). I was working a physical job, playing heaps of football, and training for a marathon, and then I got an immunisation (for hep, as I'm a gardener) and shortly after that I got the virus.

It's been a year for me now, and I feel I've half recovered twice before major relapses. The problem for us is that we try to resume our old lives as much as possible. Look into changing that mentality and accepting the way you are for the time being until you're a long way into the clear... I'm talking at least 6months of wellness before you pick up training, and do so incredibly gradually.

Until then, advice that's helped me...

- Drink water regularly through the day

- Try to get good rest and sleep

- CoQ10 helps some people (not me yet, though)

- Get a bottle of "Complex Vit B" or "Executive Stress" b vitimins

- I find an effervescent Vit C drink always helps me through an afternoon slump

Also, i strongly recommend you buy a calendar, and score your wellness out fo 10, and your activity levels out of 10. It's good for coming to terms with this illness and you can see crashes come after periods of higher activity. You'll also hopefully see crashes happen further apart.

But most importantly: On a good day, continue to rest and take things easy. I know it's friggin' hard to do. I still haven't mastered it. But if you don't do this early on, and really change your life to slowness, then you'll be ill for much longer. At the moment, you have a much higher chance of recovery than most of us.

Best of luck. Hope you feel better soon.