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Does anyone know anything/suffer from M.E?

(80 Posts)
Chocol8 Sat 20-Nov-04 09:53:39

Doc thinks I have it and is sending me to the ME clinic in London. Any comments welcomed.

Trifle Sat 20-Nov-04 10:13:26

My brother has been suffering symptoms for the past month now - chronic fatigue being the main one - but the doctors wont diagnose anything for 6 months so that they can continue to monitor. He's had loads of blood tests but they dont reveal anything conclusive. His wife has put him on a dairy free diet and will possibly go wheat free as well as this is supposed to help. Luckily my brothers work are at present being very sympathetic despite him being off work for nearly 3 weeks and no guarantee that he wont be off for long periods in the future.

tiptop Sat 20-Nov-04 10:54:51

Chocol8 - I was diagnosed with CFS (chronic fatigue syndrome) a while ago. Sorry, I won't be around this weekend much, but I'll check back on this thread as soon as I can. Hth.

Chocol8 Sat 20-Nov-04 18:23:29

Thanks Trifle and Tiptop for your replies (3 types of food, can't be bad eh?).

Besides a few websites, I cannot seem to find an awful lot out about it, or the symptoms. I haven't said anything to work yet and I have been off a couple of times in the last 2 months but at the time the doc said it was tonsilitis, then glandular fever then underactive thyroid gland and now M.E. Bloods, like your brother Trifle, have been inconclusive in showing anything but still my glands are up, I have a continuously sore throat and feel like pooh. On bad days I even ignore the phone when it rings as I don't have the energy to hold it to my ear, or talk - it's ridiculous.

Please do check in again Tiptop when you have the time and Trifle, (this is making me hungry!!!) I would be interested to see if your brother feels any better on his new diet. Thank you. x

KatieMac Sat 20-Nov-04 18:35:13

I was diagnosed with CFS in 94 and have had ups and downs since then. I was at my healthiest when I was pregnant

It's an illness with many facets....mine was only improved by rest while other people's has been visible improved by gradually increasing exercise.

There is the ME Society (or there used to be)
I saw Dr Weir at the Infectious Diseases Hosp in Frein Barnet

spacemonkey Sat 20-Nov-04 18:50:42

sorry to hear this choc

my mum was diagnosed with ME following a horrible virus some years ago, and she still suffers chronic fatigue now to a certain extent. She has found rest to be the only cure and has learned to pace herself. Mind you, she's a lot older than you and she's had a stroke since as well, so that probably makes it more severe.

I think I would look into homeopathy or other alternative therapies as there's not a lot western medicine can offer to help afaik.

Keep us posted, hope you are not suffering too badly

tiptop Sat 20-Nov-04 23:49:40

Chocol8 - Hi, again! Just got home and I'm very tired so I'll write again on Monday or tomorrow if I get a chance.

P.S. I can't remember what tiptop is! Is it something to do with puddings? I just wanted a name beginning with t and that's what popped into my head at the time!

CountessDracula Sat 20-Nov-04 23:54:09

tiptop was fake cream that you made like angel delight!

My step sister and two of my friends have this. A nightmare. I have recently had glandular fever so kind of know how you feel you poor thing.

I saw a fantastic herbalist who specialises in chronic fatigue, she sorted me right out. Check out this website Jo Dunbar is the one who specialises in ME - her husband or boyfriend has/had it.

Best of luck

SecondhandRose Sun 21-Nov-04 09:27:17

Hi Chocol8 my BIL's girlfriend had it for 12 years. She is now 30 and has missed most of her youth. She has mostly been bedridden with some good weeks and bad weeks. She was unable to go in a car because of the pain etc etc.

Her symptoms have drastically improved since she has been going to London to visit a self help group. It's one of these motivational things and apparently she is nearly cured.

One of the things they say about ME which sounds very strange to me is that the illness is mental but the body actually has the physical symptoms.

So maybe it is mind over matter?

NatureDoc Sun 21-Nov-04 14:19:55

It can be due to loads of different things from glandular fever cirus to poor sugar levels to hypothyroid to adrenal exhaustion to candida etc etc - the medics seem to put it down to depression and put people on prozac (mmmMMM!) - I would definitely seek out a good naturopath/iridologist - www.gni-international.org would make a good start.

hmb Sun 21-Nov-04 14:27:31

A friend of mine has it and has been helped a great deal by cognative behaviour thrapy

OldieMum Sun 21-Nov-04 14:48:55

I'm sorry to hear that you may have ME. How are you feeling? ME can vary a great deal in terms of the seriousness of the syptoms. Some people mentioned on this thread have had it severely. I had it much more mildly. I was never diagnosed, but had many of the symptoms after a viral infection in 1987 and until the early 90s. In that time, I managed to do the fieldwork for my doctorate (a year and a half in an African village), finish the thesis and get my first teaching job. I learned to slow down and pace myself and also to recognise when the symptoms were about to flare up, in order to rest completely. I imagine you will get lots of useful advice from the clinic and you may find that you can keep doing what you are doing, provided that you learn to slow down. Good luck.

tiptop Sun 21-Nov-04 21:58:12

CD - at not knowing what my own nickname was and at not liking the stuff that I accidentally named myself after! Thanks for the website link. I have read it and may look into it further. It would be lovely to be better.

SecondHandRose - I'm not trying to be picky, but I don't think it is a question of mind over matter. I've missed out on going to funerals of family members that I really wanted to go to, and so many different things. Basically, if dh isn't there to do the driving, planning, etc then it doesn't happen. I've had to give up work for many months when I really enjoyed it. I don't know if or when I'll ever work again. I've had to give up my hobbies entirely. I had a large network of friends and relations that I used to write to regularly and now it's just a few words in their Christmas card. I hope that doesn't sound harsh. I don't mean it to be. I've been existing for the last 3 years, not living. I've done everything the doctor has suggested as best I could. I've seen a card for a group, but getting ready to go out is hard enough (getting showered and dressed is hard work when you're exhausted) without the added stress of getting there and back as well. If I was to do that, I would be shattered afterwards and then I wouldn't be able to fetch the children from school, make their tea, etc.

Chocol8 - Don't be worried about not having the energy to answer the phone or about feeling bad about admitting it. I've been the same and sometimes I am still, even though I've learnt to pace myself far better. Unless you've been in tears about having to do something (i.e. walk upstairs) that other people wouldn't think twice about doing, you can't understand the effect of M.E. on your life. I don't like even close friends knowing how bad it can make me feel and how tough it is even though I'm not working at all atm. When do you go to the M.E. clinic? What blood tests, adrenal tests or whatever have you had so far? Sorry, got to go, dd has had a nightmare. Will check back tomorrow.

candy Mon 22-Nov-04 18:26:09

chocol8 - just wanted to send hugs - as people will know from another thread, I'm feeling dreadful at the moment, really tired, no voice, awful sore throat - but at least i'm pretty confident that these things will pass - ME sounds so dibilitating and I wish you every luck with consultants, support groups etc - thinking of you.

mfh Mon 22-Nov-04 18:41:49

chocol8 - really sorry to hear this. My DS1 has ME, so though I don't know first-hand what it's like, I've learnt a lot.

I hope the ME clinic is useful, and would be interested to hear what advice they give. We have found the approach of pacing, and very gradually increasing activity has worked, but it can be a slow process.

It sounds like you are able to work - is that the case? If so, do take it easy.

Best wishes

Chocol8 Mon 22-Nov-04 18:51:59

Hello there and thanks so much for all your lovely advice/wishes/sympathy.

Having done a bit of research into ME it looks like I will try the alternative therapy route as I need a back up to not being able to rest (single working parent with special needs child).

Thank you for your links Naturedoc and Countess, I will take a look at these in more detail tonight. Most of you have said that pacing yourself and being aware of slowing down a bit will help and already I am trying to get into that frame of mind, though it's hard to do this without feeling guilty!

Tiptop (well, I used to like it - in tea!) I have had 1 swab (to discount ongoing tonsilitis) and 3 blood tests to discount stuff like Glandular Fever and Underactive Thyroid Gland. The absence of any evidence from the bloods along with the physical symptoms (extreme tiredness which comes and goes/swollen tonsils and glands) is what the doc is going on at the moment although she seems very sure. I guess I will have more tests when I see the specialists.

Candy, sorry to hear you're unwell - I must admit that I don't often venture out on to other discussion boards very often, so hadn't heard that you were feeling unwell.
I really hope you are feeling betterer very soon - and thank you for your kind thoughts. x

KatieMac Mon 22-Nov-04 19:29:11

Remember if you had a visible disability everyone would understand your need to rest....ME/CFS is an invisible illness and just 'cos people can't SEE it - doesn't mean it doesn't exist

Rest when you need to - I remember one time I was cleaning the bathroom - it took me over 3 hrs - I wiped the sink and had a little rest, then the loo, with a rest the some of the bath (with a rest) then the rest of the bath (again...) you know what I mean

Rest when you can - the housework can go hang

tiptop Mon 22-Nov-04 20:11:48

Chocol8 - I have an under-active thyroid as well as M.E. I also suffer from sore throats and tonsilitis. I've had various tests to discount adrenal gland failure and when they came back clear, they diagnosed M.E. That's my history in a nutshell. P.S. The name tiptop is really bugging me, now! I'm actively seeking a new name!

KatieMac - I do this with daytime tv. I bribe myself to do little tasks when a boring item is on This Morning. Politics item - put washing in machine. News item - put washing on line. Watch Neighbours then Doctors and then take the dog for a walk before the school run. That's how I manage to get by. They're just little coping mechanisms, but they work.

CountessDracula Tue 23-Nov-04 10:05:26

tiptop you should give Jo Dunbar at Botanica Medica a call - these were all things she was telling me about, adrenal gland stuff is apparantly very important to treat. She will give you the first consultation free btw.

tiptop Tue 23-Nov-04 12:39:53

CD - Yes, I will get in touch with her. Can you give me a ball-park figure on how much it cost you when you did it, please? Thanks.

CountessDracula Tue 23-Nov-04 14:00:45

I think the herbs were about £6 per week. Consultations were IRO £20 or £25 after the initial free one.

tiptop Tue 23-Nov-04 15:07:11

CD - Thanks for that. I'll look into it further.

rosies Wed 24-Nov-04 19:24:06

some info here

have you thought of trying reflexology?

tiptop Wed 24-Nov-04 22:41:49

rosies - Thanks for the link. Yes, I had thought about it, but I hadn't actually done anything about it. Part of the problem is that I don't go out if I can avoid it. Anyway....I clicked on the link and found someone in my area. I'm not sure if she's the same lady that I went to see about 5 years ago. I'll give her a ring and make an appointment. Thanks again.

80sMum Wed 24-Nov-04 23:26:18

This is interesting. Perhaps it might help some people, and it explains why antidepressants might work.

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