M.E, depression + glandular fever link?

Savvy_Sue

Thanks for your suggestions Savvy Sue & Metro Gnome, I am hoping to get through this without relying on drugs too much.

I have looked at lots of sites on the internet over the last few days and I have been in touch with the local health authority regarding self help groups in the area. No-one in my circle of friends, work colleagues etc, seems to have heard of it and as I don't know too much about it myself it is difficult to know how it will affect me in the longer term.

I was pleased to see that you said a work colleague suffered from it, that gives me hope that it will be possible to work. ( I don't mean I am pleased that they suffer from it, hope I make myself clear on that.)

I have been looking at alternative therapies including nutritional supplements and exclusion diets and would be interested to find out more about accupuncture etc.

I did understand the sense in which you said it! I don't know HOW my colleague copes, I know she is often in a lot of pain and regularly takes quite strong painkillers and rests a lot when she is at home. Sometimes she goes and has a lie down at work too. But she just does NOT want to stop work.

I know that she tries to exercise regularly as well, she loves swimming and goes to a session when the water is extra warm whenever she can. She was also referred to a pain clinic where she spent a week being assessed and having suggestions made to help improve her quality of life.

I hope you can find local sources of support etc.

catznine

Thank goodness I found this thread! Now know I am not alone! I have just been diagnosed with CFS having been suffering from fatigue for more than a year - actually I have been like this on and off, sometimes a lot worse, for the last 13 years!

About that time I was diagnosed with depression but they did some blood tests and found Epstein Barr cells in my blood but didn't explain this, just treated me for depression. I was so weak that to get down the end of my garden I needed a series of seats and benches for rests! I was also always very cold, my joints were very painful and my words wouldn't come out right.

Over the years I have been treated for depression but have possibly needed that as both parents have died in that time. I have learnt to pace myself so that if I have a busy day I have 2 or 3 quiet ones to recover. I now work minimum hours in the late afternoons and this gives me most of the day to summon up the strength to get to work, it is a job I very much love and feel if I didn't do this I would soon be suffering from depression and I am definately not depressed right now! I am also lucky enough to get a lot of leave so I get time to recover ;D

Is it possible that I have been suffering from CFS all along? and was there anything I could have done to prevent this especially the current setback.

Cat72

Hi
Yes this is a good board, it does help to talk to such nice people and hear about their experiences. Catznine you said they found Epstein Barr cells , excuse my ignorance but what does that mean ?
Also could anyone help me out, I got my hospital appointment in today for march to finally see a consultant. I am a bit worried as to what to expect. Can anyone give me any advice as to what might happen at a first consultation. Im afraid I cant get it out of my head that there is nothing up etc as today I feel pretty ok. Part of me keeps thinking HOW can they tell whats wrong with me ? is there anything wrong with me. Gives me a sore head ! ::)

jellyhead

i think eppstein barr is the same virus as glandular fever, but i could be wrong. my doctor called my glandular fever 'infectious mononucleosis'. i was at uni, pregnant. i was on my work placement year so as i was an office worker my doctor tested me for glandular fever (i told him i'd been in contact with someone who had it, in actual fact i shared a coffee cup with him at the uni coffee machine, poor students do that but in hindsight it was a daft idea!!). my mother got it from me but at least three people i know of, all male, also got it but their doctors refused to test students for glandular fever and insisted it was depression! they were all put on antidepressants that didn't help.

my fatigue keeps coming and going, even 2 years after having my baby i was being tested and diagnosed with glandular fever each time i asked for an explanation for my extreme fatigue, aching joints etc. i've got it back again, 8 years later, i'm pregnant again but even so other people have told me i shouldn't still be getting glandular fever after so long.

being fobbed off by my doctor was no help so i've tried to find solutions myself. i may not have ME but some of you might find the following worth trying anyhow:

1) - iron. i find that i'm often anaemic so taking iron does help. i have IBS and can't tolerate iron all the time, i take it when i start getting anaemia symptoms and it does help.

2) fatigue can be a symptom of IBS. it can affect your food absorption and also lowers your immune system. peppermint capsules (colpermin) help, or you can drink peppermint tea. avoid triggers such as fatty meat and fatty or sugary foods. belgian chocs are a definite no-no!

3) omega 3 fatty acids (fish or hemp oil) are fantastic for memory loss. they help you concentrate and remember things, make you almost normal.

4) i found out i have PCOS (polycystic ovary syndrome). it also causes fatigue, aching joints, memory loss etc. it might be worth investigating if you're female. it can also lead to insulin resistance, a pre-diabetic condition where you get fat and are always shaky and hungry.

i find that fish oil is the most amazing thing i've ever tried, the effects are really noticable, i don't feel like my head is full of cotton wool anymore, apart from bad days. anyway, just thought i'd mention those things even though i'm not diagnosed with ME. glandular fever has knocked me for six these past 8 years and i get really sick of being told by doctors that i'm depressed when i know full well i'm not. i have been depressed in the past so i know what it's like.

Ted_Hutchinson

Exploratory open label, randomized study of acetyl- and propionylcarnitine in chronic fatigue syndrome.

Both high EPA Omega 3 and L'Carnitine are available cheapest from ZIPVIT

A fuller picture of all the possible interactions which could give rise to CFS available here Possible contributing factors or factors which may be mistaken for CFS

As the cost of trying high dose Omega Juice and high dose L'Carnitine is relatively minimal (if you use Zipvit) and the dangers of side effects or counter reactions infintisimal I do hope everyone with the condition will give it a 2/3 month trial. (Fish allergic folk could use flax oil or ordinary brown linseed as a replacement for the omega juice fish oil). Although my the condition underlying my inflammatory response was originally polio the action of the proinflammatory cytokines may be similar irrespective of the origin although the presentations will differ according to the weakest points in the body concerned.

Anyway since I've started on the above supplements I'm better than I have been for years, however I and other readers, must note this doesn't remove the underlying cause. It just enables you to moderate the effects. If it takes 2 weeks or 2 months to start seeing an improvement it will take more or less the same time to return to your current baseline should you stop the supplements.

Savvy_Sue

you said they found Epstein Barr cells , excuse my ignorance but what does that mean ?

I'm as ignorant as you are, but Barbara Windsor was on Woman's Hour on Tuesday this week so that may be useful. There are also links to an Epstein-Barr site (and to East Enders, but that's probably less informative.

She was very ill, but was about talking a workout video she's produced, ostensibly for older women, but it sounded perfect for the less mobile! Exercises to be done before getting out of bed, at your own pace!

Also could anyone help me out, I got my hospital appointment in today for march to finally see a consultant. I am a bit worried as to what to expect. Can anyone give me any advice as to what might happen at a first consultation. Im afraid I cant get it out of my head that there is nothing up etc as today I feel pretty ok. Part of me keeps thinking HOW can they tell whats wrong with me ? is there anything wrong with me. Gives me a sore head ! ::)

I am sure that if you have been referred to a consultant they cannot say that there is nothing wrong with you at a first appointment. I don't know exactly what they will do or say, but there are lots of tests which may be done to eliminate rare but possible explanations for your symptoms.

Because 'cotton wool head' is a common problem with the kind of things we've been talking about here, I do recommend keeping a symptom diary of some kind or at least a list of symptoms. If you are not up to it, do you have a family member who can help with this? Then if you arrive on a cotton wool day, you have a prompt. And if you arrive on a good day, you can say "I'm OK today but in the last 3 weeks I have been unable to get out of bed on x days / in bed by 7 pm on y days / too tired to cook a meal on z days" etc.

At times this will make depressing reading, especially if you seem to be getting worse or not improving. But in time - hopefully! - you will see that you ARE getting better / not deteriorating, even if you don't FEEL any better. You can also record what you've tried and whether it seems to work!

If you have a good relationship with your GP, is it worth asking him what may happen at the consultation and what the consultant's speciality is?

Mumstheword

Since I've been taking L'Carnitine I've been 100% better

Just ordered some, along with some omega3 juice (which will go in the bin if it tastes yuk, and be replaced by capsules ;D) from zipvit.

Two of your posts above came across with such high recommendations that, if my memory allows me to, I will try these out for a couple of months.

Have you tried co enzyme q10? I haven't, but ask because I have seen it associated with helping conditions such as ME

My main problem is forgetting to take any tablets. Even associating them with mealtimes doesnt help, as if I am distracted at all, it disappears from memory, only to resurface hours or days later ;D But I'll give it a go!

Cat72

Im the same can never remember to take pills. I bought high grade fish oil about a month ago and keep forgetting to take them - so I cant say if they work or not !! :-/

M.E.2-2

I use xreminder pro on my pc which is a calendar,apps. diary and reminder. It works for me as I have to remind myself about nearly everything and when the reminder flashes up for tablets,off I go and take them.If I am stuck in bed or the pc is down then I use the wife but she tends to forget as well sometimes.I have tried the pill boxes with daily compartments but the box tends to get put aside and out of sight--out of mind.

Mrsbojangles_2

Sorry will post later