Anyone else on here had ME or CFS?

A GP has dx'd this in me, but the second GP wasn't happy about the dx so sent me to a neurologist who is now sending me for a brain scan to rule out MS (but I don't think its MS), so I'm due for that on the 15th of September...
 
You may ask!!

I had it in my mid 20s for around 5 years, some people get over it and some dont and the severity differs so much from person to person. Some days i think about it and as i have never really spoken to anyone who has had it or has it now i am curious as to how they "get on" with it and also how their family are about it etc..
 
Is there a website for suffers?
I was diagnosed with MS 3 yrs ago but looking back history have had it at least 20yrs I found a website that was a great help.Just talking to someone who knows what its like helps.
 
I do have mild Fibromyalgia, which fortunately hasn't affected me too much over the last couple of years, but when i was first diagnosed it not only made me extremely tired i often couldn't move due to all the muscles in my back going in to spasm. I'm not affected as much as i now know how to manage it, but it doesn't take much to trigger it off... Stress, tiredness, or even just an odd movement. It's linked to CFS because it affects muscles/tendons/ligaments, which when pulled/strained or spasm prevent you from having a decent nights sleep, and it becomes a vicious circle trying to rest and get comfortable to help the above recover... (hope that makes sense... lol)
 
I dont know yet, am currently going through the testing for neurological disease, MS etc. Its a difficult time, waiting to see the neurologist again after being in hospital again last week.

Sad thing is until now it hadnt affected my riding too much but after my latest issue my riding has completely gone down hill so that after 30 mins I cannot get my legs to do anything anymore. Am entered in the North West Working Hunter championships with my big young mare in 2 weeks but dont think I will be fit to do it. Not after Thursday nights disaster.

Hopefully whatever it is will eventually wear off like it has for you.
 
Interesting fact about ME, CFS and FM (And this is proven fact in clinical trials) talking about them on websites makes the condition worse... weird hey?

Blitz
 
Interesting blitzn.

I have not been diagnosed with fibromyalgia but they did tell the neurologist I have it which is funny. I take amatryptoline (sp) 20mg a night but it conks me out and my son is up most of the night.
 
Yes - fully diagnosed when I was 19 - recovered five years later. Seriousness: dropped out of uni, had disabled badge and at my worst, could do 4 hours out of bed and only talk to one person at a time. Couldn't handle light/ noise and had constant pain.

Now - two degrees later, full time job (management consultant so long hours/ travel): have climbed kili/ hiked in Nepal/ run half marathons; worked in sub saharan africa for 4 years: rode in Tanazania - don't currently ride at the moment due to lack of decent stables near me.

I do tell people (have put it on job applications/ told my boss and colleagues and told friends/ lovers but find its glossed over - partly I suspect because I also gloss over it. The only irritating thing is I seem to "catch up" the years missed, and then there's another leap (more social as in relationships since I spent five years living pretty much as a hermit/nun)

The only lasting physical symptom is my ability to control temperature is shot to pieces and when I get cold, I stay cold very fast.

By the way, I had excellant doctors, saw a psychologist and also a herbalist who gave me what tasted like paint stripper.
 
Things that are proven to help with ME and CFS (Although less so with FM)

SLOWLY increasing amounts of exercise,
tricyclic antidepressants (drugs like amitriptylline)
CBT and other psychotherapies (helps you deal with the symptoms better)
acupuncture.

HTH

Dr Blitz (who did research into ME and CFS a couple of years ago)
 
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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I have also been diagnosed with it for the last 20 years. I am still not convinced it is what I have ( Fibromyalgia), but I do not know what else to say it is!!!!!!! :(

Hey ho, I guess you just have to ' keep calm, and carry on', ontop of asthma, hayfever, and allergiy to horses LOL.

Big hugs to everyone else feeling rotten xxxxxx
 
TequilaMist said:
Now thats weird!!
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Agreed on that one! I've got MS and if depends what you're reading / who you're talking to. Plenty of doom-mongers out there but also plenty of websites to help. I researched & followed a low-fat diet since diagnosis 4 years ago & neurologist agrees I'm doing well (though I'm sure I'm just 'lucky'). Do your best to help yourself & stay sane & healthy everyone!
 
blitznbobs said:
Things that are proven to help with ME and CFS (Although less so with FM)

SLOWLY increasing amounts of exercise,
tricyclic antidepressants (drugs like amitriptylline)
CBT and other psychotherapies (helps you deal with the symptoms better)
acupuncture.

HTH

Dr Blitz (who did research into ME and CFS a couple of years ago)
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CBT was a waste of time for me, but I'm glad it helps some :)
Amitriptylline is fantastic if you can afford to not wake up when your son wets the bed or wanders down the stairs in a complex partial seizure
I shall try acupuncture, never thought of that.

Thanks for the advice :)
 
anj789 said:
Agreed on that one! I've got MS and if depends what you're reading / who you're talking to. Plenty of doom-mongers out there but also plenty of websites to help. I researched & followed a low-fat diet since diagnosis 4 years ago & neurologist agrees I'm doing well (though I'm sure I'm just 'lucky'). Do your best to help yourself & stay sane & healthy everyone!
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I know I am lucky as can still function.
True what you say some see it as a death sentence and get touchy if you mention word wheelchair! Tho easy to be positive when I'm not in one!
I was advised against going to local centre as apparently just people trying to outdo others symptoms.Don't know if true or not but tbh could see it.
I'm on LDN at moment
OP hope you find someone to chat to as felt sites did help me as you realise your not going mad
 
TequilaMist said:
I know I am lucky as can still function.
True what you say some see it as a death sentence and get touchy if you mention word wheelchair! Tho easy to be positive when I'm not in one!
I was advised against going to local centre as apparently just people trying to outdo others symptoms.Don't know if true or not but tbh could see it.
I'm on LDN at moment
OP hope you find someone to chat to as felt sites did help me as you realise your not going mad
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I'm glad i'm not on any such sites, you do have to be careful not to get too involved on most forums.

I'm chuffed not to be in a wheelchair, have a friend who was in one for about 5 months after being bedridden for a further 3 or 4. Staying positive is the only real choice, or we can just throw our lives out the window.... see siggy :D
 
Have had ME for three years now, although seeing neurologist for further tests. Agree that you have to read between the lines on some of the designated forums, also went to a local support group who was exactly how Tequiliamist says - trying to outdo each others symptoms. Needless to say have not been back again!

I can't ride at the moment but make the most of my life as have a scooter so able to get out and about on my good days. Although today I have spent the day feeling very sick and dizzy.

MosMum - I had a years worth of accupuncture going every two weeks when I was first diagnosed. I stopped as I had no control point to say if it was actually helping me or not. Unfortunately I do not think it did help me although I have heard it has helped others, as well as reflexology.

Great believer that if you are negative about it and whoe be me then your symtoms will be worse so have to agree with blitznbobs - although when I first read thier post I thought ouch, what a bigotted view.
 
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Allover said:
Yep Fibromyalgia sounds similar, you can join my club:D

How long have you been feeling bad?
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I've not been right for about 3 years, but got a lot worse a while ago (may this year) and I ended up in hospital for 3 weeks and have had to use a wheelchair ever since :(
Have had to loan my horse out and have been signed off work since May.
My doctor this week has said I can claim DLA and get a blue badge now, which i don't know whether to be pleased about or not!

I can only stand for about 5 mins before I have pain, I can only walk with crutches around the house and I had to buy an electric wheelchair so I can take my daughter to school.

Hugs to everyone xx
 
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MosMum said:
Interesting blitzn.

I have not been diagnosed with fibromyalgia but they did tell the neurologist I have it which is funny. I take amatryptoline (sp) 20mg a night but it conks me out and my son is up most of the night.
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I'm on Amitriptylin too 10mg which I take at night, doesn't do a thing so Dr will increase the dosage next time I get my prescription.
 
I've had M.E for 13 years and was pretty much bed bound for over a year with it, it seems to run in cycles with me and I still have bad periods even after 13 years, but have learnt how to cope fairly well with the numerous symptoms I still experience.

There are some useful support websites out there and also having a supportive GP and support network has helped me as well as the cocktail of medication I take to manage symptoms, I've been very lucky in that I was never severely depressed.
 
TequilaMist said:
Is there a website for suffers?
I was diagnosed with MS 3 yrs ago but looking back history have had it at least 20yrs I found a website that was a great help.Just talking to someone who knows what its like helps.
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hope you don't mind me asking but what are your symptoms?

I have lots of symptoms of MS, but no evidence of demylination showed up on my MRI or in a lumbar puncture. I know 2 people with MS (one of them I used to be his carer) and they both say it's exactly the same as they get. The ironic thing is they are both fine at the moment and working and I'm stuck in a wheelchair.
They both have the same neurologist as me too and had the same problems getting diagnosed, I have asked for a second opinion but my GP thinks I have fibromyalgia and is referring me to a rheumatologist as the neuro's can't find 'anything significant' really don't know what to do now.
 
Seahorse said:
My doctor this week has said I can claim DLA and get a blue badge now, which i don't know whether to be pleased about or not!
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I went through exactly the same emotions when I first applied. I now have a blue badge and can honestly say once you get past your inner demons that it is a godsend. Did feel very strange the first time I used it though! Go for it, if I can be of any help with the mamoth DLA form please pm me.
 
Herbie31 said:
I went through exactly the same emotions when I first applied. I now have a blue badge and can honestly say once you get past your inner demons that it is a godsend. Did feel very strange the first time I used it though! Go for it, if I can be of any help with the mamoth DLA form please pm me.
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Thanks, a blue badge will be very handy I must admit, considering I do use a wheelchair when ever we go out and we really struggle to park. Last time I parked in a disabled space I got a ticket even though the guy could see I was in a wheelchair :(
The problem is that I don't have a formal diagnosis yet, so I don't know what to put on the form even.
I've heard the DLA form is a nightmare, so I might be frantically pming you in the next few days xx
 
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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!
 
I had glandular fever and then ME when I was 17. I missed nearly a year of school, mucked up my A levels and lost my place at Oxford because of it.

The glandular fever went relatively quickly, but the ME just hung on and on.

When I finally went to Reading University 2 years later I was contacted by the Health Centre to go to see them (very good - full marks!). They said that if I ever felt at all tired I was to go to see them..........they would have been extremely bored of me if I had obeyed that instruction throughout the 3 years I was there.....!!!!

Seriously though - I think that it is imperative that anybody with ME/CFS/whatever is also treated as if for depression. CBT is the absolute best, but medication works too.
 
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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