Anyone else on here had ME or CFS?

McNally said:
One of my best friends has jut been diagnosed with MS

I cant begin to imagine what must go through your head being told such a thing- I feel a bit helpless and would like to understand it a bit more so that i can be as supportive as possible, if not now in the future.

Can anyone recommend a GOOD site that i can read to try and understand a bit about MS please?

Hugs to you all- Health is so often something i take for granted. Threads like this make me feel bad getting stressed over my horse/house, looks etc!
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http://www.mssociety.org.uk/applications/discussion/

http://www.ms-people.com/forum/index.php


These are 2 but there are more

Hope your friend can be positive about it as it does help otherwise it sort of takes over your life and eats away at you.
I always look at it as could be in a wheelchair tomorrow or just stay as I am for next 20/30 yrs and if its going to happen it'll happen so no point in worrying about it (too much anyway)
 
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I don't want to be treated for depression. At all. I had severe post natal depression after my son was born so I know what depression feels like for me, and I am not depressed. I am a bit defensive of it as I spent 2 yrs back and forth to GP them saying my symptoms were due to depression... I have times when I just sit down and cry because I WANT to go somewhere/do something and simply cannot organise my thoughts (HEAVY DUTY brain fog) or body movements to do what I want to, including getting dressed. That isn't depression, because I still WANT to do things, I don't enjoy things less than I used to I just can't do them.

Also prior to being reffered to Neuro the number of people with an opinion that I was 'just stressed' was soul destroying. I don't think depression or stress cause physical pain in shoulders, arms, back and neck, a different kind of heavy, weak, thumping pain in legs which is unbearable if doing stairs/hills, at times so weak I cannot lift my 2 yr old out of her cot so now she is in a bed (it was time anyway really :) )

I'm not trying to complain really, these are facts of life for me and I am ok with that as much as I can be. I am NOT ok with GP/people IRL saying I am 'just stressed' or depressed because they have not seen me on a bad day... because I cannot leave the house on a bad day.

They do not know what the heck I and my family have been through :)
 
I had glandular fever 5 years ago and was left with CFS. I have learnt to control my time and not over do things. I can now work upto 5 hours a day. I start work at 7 in the morning and really try to only do 4 hours then I come home, rest and can manage my horses and on a good day I can go for an hours ride. I know when I have overdone it as I ache, have a sore throat and just need to sleep.
 
MosMum said:
I don't want to be treated for depression. At all. I had severe post natal depression after my son was born so I know what depression feels like for me, and I am not depressed. I am a bit defensive of it as I spent 2 yrs back and forth to GP them saying my symptoms were due to depression... I have times when I just sit down and cry because I WANT to go somewhere/do something and simply cannot organise my thoughts (HEAVY DUTY brain fog) or body movements to do what I want to, including getting dressed. That isn't depression, because I still WANT to do things, I don't enjoy things less than I used to I just can't do them.

Well said, depression is a completely different disease, i used to get soo annoyed when peole (doctors and parents) told me i was "just" depressed. My family now tell me it was "all in my head". God it can get annoying!!

Will say though that i am fully recovered now, though occasionaly get days when i am very tired and lethargic, i am back doing the job i love and look back on it all as a learning curve, i think it made me a more understanding and in some ways less tolerant person! I used to get quite bad vertigo which was fun when i was backing and riding away my young SF mare.
Does anyone get what i call the "ME pain", a few times i had some really insignificant knocks and a few hours later the pain was incredible, like the area was boiling under the skin?

I tried Amytripystuff(!!!) but didnt like it, so used a "herbal" substitute which helped a lot.

My road to recovery was slow and sometimes frustrating but i think that as with all illnesses you have to keep a positive attitude,

Big hugs to anyone feeling rough today, xx
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TequilaMist said:
No don't mind at all seahorse, think I was pretty text book
Fatigue since my 20's ,pains in legs/arm/chest , optic nueritis(sp) I put that down to a migraine tho didn't really get them.
Things came to head when I went numb from neck down tho did have its funny moments,it just got worse,got the MS hug which could be severe at times feels like a vice squeezing you.
now get spasticity/rigidity,fatigues still there and got worse - feels like feet been nailed to floor sometimes.My legs are starting to feel like they are giving up on me like they can't carry me,starting to drag my left leg esp if tired.Brain fog -is a nightmare ,really struggle to multi task sometimes.Random pains that vary in length of time and intensity and in various part of the body.I struggle to regulate temprature can't cope with heat at all.The usual balance and co-ordination things tho not too bad but did manage to break 6 cups in one day once as kept dropping them lol
At moment have weird ice cold patches of skin tho rest of body hot.
Got lumbar puncture and MRI both showed positive.
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Yes I get all of those, especially the random pains, burning in parts of my body and cold in other parts. I really struggle with temperature too, dropping things, lack of coordination and problems balancing. The last time I rode my horse I kept feeling I was going to fall off him.
My legs are very weak and feel like they can't hold me up, if I do manage to walk a little way on crutches then my legs throb and hurt like I've just been to the gym. General fatigue too, even if I've just done something like hang the washing out my arms ache so much and I literally can't move them for an hour or so.
When I was in hospital my legs and right arm were paralysed for about a week and I haven't really recovered from that.

I'm sure somebody somewhere will get to the bottom of this, even if I have to go private.
 
I have had ME for years and am partially recovered and can manage with Amytrip but would like to come off it. Allover, could you tell me what herbal substitute you used, please?
 
allover, the extreme pain when you bump yourself etc is apparently due to fibromyalgia, I get that too, I have been CONVINCED my toe was broken when I stubbed it, the pain is unbearable for just a little knock.

My friend cannot tolerate having someone pat her shoulder in greeting. Luckily I am not that bad :)
 
Seahorse said:
I 'might' have Fibromyalgia which is a similar sort of thing to CFS and ME so I read. I have also been tested for MS and don't have that, but will probably develop it in the future :(
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Seahorse - why do you think that you will probably develop MS in the future if you have FM now? As someone with the latter I have read extensively about it and seen umpteen specialists and no one has suggested it develops in that way.
 
Allover said:
MosMum said:
I don't want to be treated for depression. At all. I had severe post natal depression after my son was born so I know what depression feels like for me, and I am not depressed. I am a bit defensive of it as I spent 2 yrs back and forth to GP them saying my symptoms were due to depression... I have times when I just sit down and cry because I WANT to go somewhere/do something and simply cannot organise my thoughts (HEAVY DUTY brain fog) or body movements to do what I want to, including getting dressed. That isn't depression, because I still WANT to do things, I don't enjoy things less than I used to I just can't do them.

Well said, depression is a completely different disease, i used to get soo annoyed when peole (doctors and parents) told me i was "just" depressed. My family now tell me it was "all in my head". God it can get annoying!!

Will say though that i am fully recovered now, though occasionaly get days when i am very tired and lethargic, i am back doing the job i love and look back on it all as a learning curve, i think it made me a more understanding and in some ways less tolerant person! I used to get quite bad vertigo which was fun when i was backing and riding away my young SF mare.
Does anyone get what i call the "ME pain", a few times i had some really insignificant knocks and a few hours later the pain was incredible, like the area was boiling under the skin?

I tried Amytripystuff(!!!) but didnt like it, so used a "herbal" substitute which helped a lot.

My road to recovery was slow and sometimes frustrating but i think that as with all illnesses you have to keep a positive attitude,

Big hugs to anyone feeling rough today, xx
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Allover - what herbal remedy did you use instead of amitriptyline?
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measles said:
Seahorse - why do you think that you will probably develop MS in the future if you have FM now? As someone with the latter I have read extensively about it and seen umpteen specialists and no one has suggested it develops in that way.
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When I was in hospital and had numerous tests and MRI's I was told there's no evidence of MS now but there is a possibility of me developing it in the future.
Fibromyalgia has only been suggested by my GP since I have been home from hospital and no better :(
 
Unfortunately not one that is legal in this country! Some states in America use it for medicinal purposes for a wide ranging number of illnesses so it is more or less "safe" to use. Here you dont know what you are getting so could not advise that anyone else used it, especially with all the talk about it causing lasting mental health issues.
 
I think CFS and ME manifest differently in different people. My 19 year old son was finally diagnosed with post viral fatigue syndrome when he was 17 and my best friend has had ME on and off for the last 20 years, at one time being bed ridden for nearly a year.

I have a big problem with the way it is treated by most GP's. The fact that it is most commonly treated with CBT I think is disgusting. In many other countries it is not the case and the UK is so behind the times on this. Sufferers don't need to be told they must try harder, in fact thats often the worst possible thing anyone can do. They need to examine what is happening to the body and the lack of mitochondrial function.
I am a fan of http://www.drmyhill.co.uk/wiki/Category:Fatigue a doctor who knows what shes talking about as shes a fellow sufferer.

So much can be improved by diet and supplements.

http://www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.

(Steps down off pedestal - sorry but this really gets me going)
 
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Allover said:
Unfortunately not one that is legal in this country! Some states in America use it for medicinal purposes for a wide ranging number of illnesses so it is more or less "safe" to use. Here you dont know what you are getting so could not advise that anyone else used it, especially with all the talk about it causing lasting mental health issues.
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lol my friend with MS uses that regularly he's actually improved loads since!
 
I had Glandular Fever at 14, and was virtually bedridden for a year, meaning I repeated a year at school, I was then diagnosed with depression at 15 after my 1st suicide attempt, glandular fever affects different people in different ways, but mine has never left me, resulting in flare-ups and CFS. Im on depression meds (Rodomel xl) and can only manage about 4-5 hours of physical work a day. Luckily Im a groom so can have time to rest in between working. I find it hard to ride for more than 30/40 mins without suffering the next day, and more than twice a week is a no no at the moment.
I have lower back pain and spasms, on/off sciatica (sp) and a constant headache, amongst all the other aches and pains associated with general living!
I bruise like a peach, and Im very very sensitive to pain...even a poke or scratch feels like a break.
Do other CFS/ME sufferers struggle with sleep? I find my body is tired before my brain, so I struggle to get off to sleep, then dream and have nightmares all night resulting in frequent waking in cold sweats etc (I also sleep walk and talk, which is fun for my partner....not!!) Then when my alarm goes off I feel like Im being dragged up through the mud!
Oh well.... carry on camping! xx
 
Rosehip, sounds like you are having fun at the moment!

I used to get tonsilitis regularly when i was younger and was tested for Glandular fever. Maybe the CFS stems from this? Sleep issues are common with CFS\ME etc, as for disturbed sleep (i also sleep walk and talk) i once went into my dads room and started a conversation with him, unfortunately at the time i was naked:o, and feeling like you are being "pulled through mud" when having to get up is quite common also i believe´, allthough you sleep a lot it is not a restfull sleep so the body is not relaxing:(
 
I was diagnosed with post viral fatigue about 2 1/2 years ago; the Consultant that finally diagnosed me said it was highly likely I been affected since about 18 (I'm now 26)and my peaks and troughs (that would last months) were what he would call relapses.

Most of the time now I am fine, I lead a busy life - working full time with an hours commute each way, and have my 3 horses who I keep at my own place so totally DIY. I do have to be careful though, if I let myself get run down or overly tired I can feel myself slipping - my heart palpitations come back, my chest and joint pains, and I have a constant feeling of being on the verge of collapsing - so basically I head for bed!

I also suffer from migraines, and was prescribed 10mg daily of amytriptaline to prevent the migraines. I take these before bed as they cause drowsiness - it may be coincidence, but since I've been on these (about 18 months) I sleep so so much better and feel so much more rested than I ever used to. I have always been a real sleep talker, but according to OH I hardly ever sleep talk now.
 
Just to say that I found CBT as one component of treatment very helpful. I was 19 when I was diagnosed and was forced to drop out of uni, move back home (to a very rural village). At the time I was told I would be unlikely to work full time in any capacity let alone the physically demanding career I wanted at the time. I had a great therapist who was brilliant - he did look at my diet/ instructed me to take supplements galore and also helped me to manage my illness. Importantly, he also gave me someone to talk to who was not connected with my parents (who are great but I needed someone else who wasn't involved)
I would emphasise the need to find a good therapist (someone who you will always tell the truth, not what you think they want to hear), not just anyone for it to be worth it.

I have had depression and it is different from CFS/ME. I also had both at the same time - co-morbidity. Unfortunately, depression is a common co-morbidity with a number of long term conditions including cancer - and to be honest, not entirely surprising.

For those of you who feel CBT is foisted on you - all GPs should be following the NICE guidelines which state CBT can be offered if appropriate but is not a mandatory part of the guidance. The guidelines actually emphasise the role of the patient in determining their care plan http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf
 
I have been following this thread with interest as I was diagnosed with ME/CFS nearly 3 years ago after all the “you are depressed” comments from GPs/consultants etc. It got to a point where I walked into the consulting room and stated that before they said anything I would just like to point out that I was not depressed. If however, they thought I was, would they kindly prove it? A lovely rheumatologist pointed me in the direction of ME/CFS specialists and the rest is history!

The best help I had was from group counselling sessions which proved this was a “real” condition and you could share your experiences with others. The counsellors talked you through all the different aspects of the disability as well as offering tricks of the trade to help you get back to a normal life. After months in the dark this was the best 6 weeks of my life as it gave me something positive to work with and stopped me being passed from pillar to post by “non-believers”.

One of the options given to us was CBT which I found useless, but I think it was more the person doing it and not the theory behind it.

Rightly or wrongly I have not seen a GP for this condition for over a year as I am quite confident in pacing myself and saying no to things that would be a step too far – unfortunately riding is one of those things I have to limit. I am now able to work part-time and that again has helped as it gave me a lot of my confidence back that I had lost during the wilderness months.

Posts like these, to me, are very helpful and keep me on a positive road as it reaffirms that I am not imagining, malingering or suffering as bad as a lot of others. Thanks everyone.
 
Yes we are all malingerers in the eyes of the non-believers!!!! We should all just pull ourselves together and get on with it, lazy *******s:D

One of the first conversations i had with my GP went something like this

Me: Been really tired, nauseus, dizzy etc etc for about 3 months now i need to sleep all the time

Doc: Are you depressed?

Me: No i dont think so i dont have any reason to be depressed

Doc:Are you sure, you dont need a reason to be depressed

Me: Well you tell me then!!!!!!

Must admit i gave up going to them after i was diagnosed, the best advise they gave me was to listen to my body and do as it tells me.
 
Fletch said:
I have been following this thread with interest as I was diagnosed with ME/CFS nearly 3 years ago after all the “you are depressed” comments from GPs/consultants etc. It got to a point where I walked into the consulting room and stated that before they said anything I would just like to point out that I was not depressed. If however, they thought I was, would they kindly prove it? A lovely rheumatologist pointed me in the direction of ME/CFS specialists and the rest is history!
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I was so angry the last time I went to the GP, they had done 2.5 years of blood tests. I can tell you without a doubt I do not have Addisons Disease, Huntingtons, Anemia, Hypothyroidism... the list is endless. The last time I saw the GP (before I saw the sensible one), he said "Well we could test for coeliacs..." I just made a prat of myself by bursting into tears (you could SEE the guy thinking 'not depressed, yeah right') and snapped "I'm not depressed, I'm not anemic and I don't have ANY of the symptoms of Coeliacs disease! Try medical school mate, its fun, you'll love it!"

Then a stalked out feeling quite stupid lol. Luckily the other GP in the practice was fresh out of med school and had no compunctions against ME/CFS :)
 
Riding went out the window for me too so i put my mare in foal and she produced for me a stunning colt foal who is now a Liscensed stallion with the AES and is going to the Olympics (ok i made that bit up about the olympics but we can all dream hey!!):D
 
Allover - the first gp I saw signed me off for a week and when I went back he told me that I had had a week off, what more did I want and go back to work! Nice. It took me three gps before one of them did anything pro-active.
 
The last time I saw the GP (before I saw the sensible one), he said "Well we could test for coeliacs..." I just made a prat of myself by bursting into tears (you could SEE the guy thinking 'not depressed, yeah right') and snapped "I'm not depressed, I'm not anemic and I don't have ANY of the symptoms of Coeliacs disease! Try medical school mate, its fun, you'll love it!"


LOL, you are in denial, YOU ARE DEPRESSED you just wont admit it, cry baby!!!:D

p.s. Quite enjoyed the B12 injections!
 
LOL, you are in denial, YOU ARE DEPRESSED you just wont admit it, cry baby!!!:D
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LOL! I can't be depressed. Depression is just anger with no passion. And I have passion, believe me! :D

I can't say bad enough about depression, my PND was absolutely debilitating... But I think I can tell the difference of how they affect me ;)
 
This is a very intersting post to me, my GPs just referring me to a CFS specialist at the moment. For the last few years I go through phases of symptoms but I have had auto immune haemolytic anaemia all my life so quite often it's put down to part of that, or the side effects to the drugs I have been on, however in March 2009 I had my spleen removed and since then have been clear of the anaemia and off medication, not long after the op I was in a really bad way totally shattered and couldn't trust myself to even cross a road, the hospital did lots of tests and the GP did the usual tests diabetes, thyroid, iron, eyes, I had CT scan and hearing tests etc but nothing showed up the doctors lost interest, at the time CFS crossed my mind but then the symptoms faded, I was left with a fuzzy head but not the chronic tiredness and aching etc and so I learned to live with it and even had some days when I felt clear, unfortunately about 5 weeks ago I woke up in the early hours with what I thought was a migraine and it's just been bad since then, I am struggling to work full time - not worked a full day since then and I hate it as I want to be out riding and playing with the horses but if I work I am too tired to do anything and if I don't work I feel guilty if I do anything else!

My boss sent me to Suffolk for a week of R&R with my parents (he knows too well a week at home and I wil get too bored and push it and do things I shouldn't) so here I am waiting for referral and wondering what the hell is going on!

I found a very good website http://www.sleepydust.net/

It is hard dealing with other people, so many keep telling me I am depressed! It's is really frustrating!!

I could write so much more but won;t lol!
 
MosMum said:
I don't want to be treated for depression. At all. I had severe post natal depression after my son was born so I know what depression feels like for me, and I am not depressed. I am a bit defensive of it as I spent 2 yrs back and forth to GP them saying my symptoms were due to depression... I have times when I just sit down and cry because I WANT to go somewhere/do something and simply cannot organise my thoughts (HEAVY DUTY brain fog) or body movements to do what I want to, including getting dressed. That isn't depression, because I still WANT to do things, I don't enjoy things less than I used to I just can't do them.

Also prior to being reffered to Neuro the number of people with an opinion that I was 'just stressed' was soul destroying. I don't think depression or stress cause physical pain in shoulders, arms, back and neck, a different kind of heavy, weak, thumping pain in legs which is unbearable if doing stairs/hills, at times so weak I cannot lift my 2 yr old out of her cot so now she is in a bed (it was time anyway really :) )

I'm not trying to complain really, these are facts of life for me and I am ok with that as much as I can be. I am NOT ok with GP/people IRL saying I am 'just stressed' or depressed because they have not seen me on a bad day... because I cannot leave the house on a bad day.

They do not know what the heck I and my family have been through :)
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I cannot tell you how much this has hit home with me I am so fed up of people telling me I am depressed and stressed really I am not, the only time I would say I am slightly depressed is when I am stuck inside and can't do what I want to do it is so frustrating and yes depressing but this is not what I have, and stress wise at the moment I'm the least stressd I have been for a while - though apparently past stress could well have caught up with me...... argh!!

It is a relief after all these years to have found a GP who is looking in to it without blaming something else!
 
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Poor you, i remember what its like to be in a bad stage, do you have one of those nasty "electric" headaches (mine used to feel like an electric shock going from front to back!) Try not to push yourself too much, easier said than done i know, and i definately know what you mean about feeling guilty about doing "nice stuff" if you have not been out to work. It is such an annoying thing to live with as people who dont have it really dont understand that you can feel fine one minute and then, bam, you need to have a lie down,

Chin up!!:)
 
Never thought of it like an electric shock type headache, keep using the word fuzzy but actually that's probably a better description for it! Doesn't bounce around though, just sits there fizzing all around in a circle!
 
I suffered after having glandular fever when I was 25!! So, it's not a teenaged only illness. After almost a YEAR of GF,I never really felt well,a dn finally realised I had ME/CFS although 20 or so years ago, it was a real anomily in the medical world at that point and I was treated as if I had depression, which I did not. I am lucky that I recovered but I do if I am ever ill, my glands swell up hugely, and one has NEVER gone down fully, after the GF.
Here is a link, though, to a friend who has after most of her life being ill with ME amongst other things, cured herself- largely by cutting cutting certain foods from her diet. Do read the extracts, they are hilarious, especially anyone who's experienced a colonoscopy- you will find yourselves in stitches!
http://www.julieksallis.com/about.htm!
 
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