M.E, depression + glandular fever link?

Savvy_Sue

Ted's obviously the expert: don't overdo it Ted, I know that technical stuff is hard going when you're in the best of health!

Two possibly useful websites about ME are:

The ME Association

Action for ME
I believe they take different approaches in many ways, so you may find one more helpful than the other.

And if a young person is involved then

Association of Young People with ME

I don't know if they'll help the original poster: if it was possible to forestall the slide into ME then clearly that would be good!

My own experience: I suspect I have (had) mild ME for over half my life, following a bout of glandular fever at 18, and suffered from mild to moderate depression, both postnatal and 'other', for longer than that. But it's never been formally diagnosed in my case: it was at its worst before I married and I rarely worked a full month, but then improved. There are times when I have to pace myself: I now rarely go out in the evening because I just don't function well the next day, and there are times when I come in from work and sleep for 3 hours.

I know two people who've had to take early retirement because of ME, and I know families where teenagers have been really ill for a long time. I can also offer sympathy where family members won't try things which might well help!

Mumstheword

Can I ask how you found out you had ME and how it was diagnosed ?

I saw a few consultants (general, neurological, can't remember the others, but there were a few!!!!) before eventually the general one referred me on privately to an M.E. specialist in Lancaster, about 30 miles away. It was he who tested me for glandular fever amongst other things (the others had all run their own series of tests too, must have given an armful of blood throughout the process). He discussed my symptoms with me, and my mum who had come along as driver and memory! He said that I had classic symptoms of M.E., and at a later appt confirmed that the cause was probably the glandular fever that I had tested positive for having had at some time.
The process of diagnosis took well over a year.

elona

I am actually hypothyroid and was tested for it years ago but was told that at the time my results were normal - it was only when they tested for the presence of antibodies years later when levels had dropped to the point it could not be dismissed any longer.

The irony is that you almost need to be feeling well to have the energy to explain and insist there is something wrong.

nearlyrich

I have just been diagnosed with Fibromyalgia and I am trying to get well so i can go back to work soon. Anyone else got this, any tips for managing it?

Mumstheword

The irony is that you almost need to be feeling well to have the energy to explain and insist there is something wrong.

Spot on.
And that's why I lost out on permanent health insurance and dss payments once they started investigating my case and making life difficult through stress!

M.E.2-2

Hi,
I have a Google Alert on a daily basis with the heading "Chronic Fatigue". I find it helpful and positive to hear from around the world re M.E
Re Action For M.E.---I think I pay an annual fee of £14 to £15 and it is worth every penny.They have vast quantities of literature to help you and your GP.There are also many local groups that you can join.
I agree with Mumstheword about talking to other sufferers and learning to manage your life.
If I can help,please pm me.

Ted_Hutchinson

Ted - may I ask if you have come across any research about the progeny of PPS sufferers? My mother suffers from PPS and is convinced that she has passed problems of various descriptions to her children and grandchildren. It would be really nice to put her mind at rest, but I haven't been able to find any information about this aspect of PPS.

I would like as dad to two daughters with three blood related grandchildren to be able to say that there is no genetically related significance to having had polio. But I can't because I know it isn't true.

If you go to SERUM CARNITINE LEVELS in POST POLIO you will see that it is true that the progeny of people who have had suffered polio are experiencing low serum carnitine levels.

It may be that a propensity for low carnitine levels may be a precursor to actually contracting polio and that this inherited characteristic is present both in those who actually got Polio and their offspring but apart from that I can't give you any logical reason how or why the children and grandchildren of those people who were the victims of polio should be different from anyone else. However as L'carnitine is known to affect the motility of sperm and has beneficial effects on erectile dysfunction it clearly operates at the very basis of human metabolism both in the body and the brain so a virus which is able to modify reactions at this level might affect progeny.

Carnitine is made in the liver so maybe having underfunctioning livers is an inherited characteristic of those who may then be more vulnerable to contracting polio. Clearly there are personality traits which people who got polio display. You only have to get three people with polio together to have an arguement as they each know better than the other. Working on a committee for PPS I can assure you was not a happy bunny scenario.

L'Carnitine is as mentioned in the link above is available cheapest from ZIPVIT unless anyone can do me a favour and find a cheaper supplier. Since I've been taking L'Carnitine I've been 100% better and am now able to stand to cook meals and wash up. I can potter round the garden and do the odd job. I don't have to worry so much when I go out and I am much more confident about the future. I had got to the point where I was considering moving house to somewhere wheelchair friendly and had been considering purchasing a mobility scooter. L'carnitine hasn't cured the late effects of polio but it does enable me to function sexually and physically so I'm extremely grateful I found the link and that it works for me.

L'carnitine isn't a cure. The neurological pain I get in ankles and wrists is still there and in fact because I am standing more and doing more than previously I think it is worse but that's my fault for not pacing myself better. I still find I "Hit the Wall" too often. By that I mean get to the point of no return. I do too much and simply cannot do another thing. I've used the word fatigue on this thread as there isn't another word appropriate but for those with ME/CFS/FMS/MS and related conditions Fatigue isn't simply being tired, it's a state of being physically and mentally paralysed so that you are like a rabbit trapped in the headlights, totally unable physically or mentally unable to act sensibly, rather than simply a bit tired.

I should point out that I am way out of my depth with this. I've only found out about L'Carnitine three months ago so have been trolling Pubmed and Google like a madman to try to find out all I can. I cannot prove that the health problems my daughters exhibit are attributable to my prior polio. I would prefer to think they couldn't be. But I suspect the opposite.


ectile

Savvy_Sue

I have just been diagnosed with Fibromyalgia and I am trying to get well so i can go back to work soon. Anyone else got this, any tips for managing it?

No, but a work colleague does and it's clearly no fun.

Have you seen:

http://www.fibromyalgia-associationuk.org/

and

http://www.ukfibromyalgia.com/ - claims to be "Absolutely everything you need to know about Fibromyalgia"

metro_gnome

I have just been diagnosed with Fibromyalgia and I am trying to get well so i can go back to work soon. Anyone else got this, any tips for managing it?

Have you looked at whether acupuncture might help? It seems to be very good for so many illnesses and complaints that I would have thought it was an avenue to pursue - but do find a good practitioner, ideally someone recommended.

nearlyrich

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.