Anyone else on here had ME or CFS?

I think they tested for anemia and diabetes. Also I have been fainting, and I never faint. Once in a car park (good job I wasn't driving!). Thanks for the advice guesstimation, so sick of being tired because feel guilty sleeping during the day or sitting on the sofa when theres so much I should be doing.
 
Just keep at them, I've had all the bloods, ct scan, ears looked at and hearing tested, get your eyes tested to just ticks another one off their list! It is an awful feeling I'm really struggling this week with pmt on top not helping!
 
Me too! So fed up of it, I just thought it was a tired spell and I was just being lazy, but if I force myself to carry on I literally fall asleep even if I am driving etc.
 
I've just read through this thread with extreme interest, while I'm sitting here in bed after my two hour nap!

I have the double joy of clinical depression and ME. The depression came first, when I was about 17, and I have struggled on and off for years. Thankfully, I am now medicated and able to function as a mostly normal human being in that respect, though I still have my issues!

About three years ago I was bitten by a dog, which turned into a massive infection which led to three hospital stays, eight weeks off work and god knows how many antibiotics. After that, I was always exhausted, achy, had bouts of tonsilitis which I've never had before, all the usual symptoms. I figured it was just the depression coming back.

Finally, last year, I changed GP's and after the usual blood tests, she diagnosed me with ME, and referred me to a specialist.

The diagnosis was in fact a huge weight off my mind, as I had thought it was the depression, and all the work I had done to try and get somewhere with my mental health was for nothing. I cut down on my hours at work over winter, but have now been able to build them back up to 32hrs a week (I'm a yard manager at a livery yard).

This June I bought my girl, and am now busy planning an autumn full of competing. Yes, I have to pace myself, rest when I can etc, and I really feel it when I have done something more on a day, but mostly I am extremely lucky. If there is something that I really really want to do then I will take pro plus and suffer for it afterwards, such as going to Burghley next week, but mostly I limit myself.

My main problem isn't weight gain but weight loss, and feeling nauseous when I eat. It is a huge effort for me to maintain my weight and I would do anything to be able to put on a few pounds! But, atm, the problems I do have seem slight when compared to the place I used to be in, both with my physical and mental health.

I did have to roll my eyes the other morning though, when all four items of post for me were:

ME appointment
Mental Health appointment
Cardiologist appointment
ECG appointment

Yay for me! lol

Right, back to my nap ;)
 
dominobrown said:
Me too! So fed up of it, I just thought it was a tired spell and I was just being lazy, but if I force myself to carry on I literally fall asleep even if I am driving etc.
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Yep be carefull with the pushing yourself, especially when you are driving, i nearly fell asleep at the wheel not a nice experience. Also i found the harder i pushed myself the bigger the fall. If you do have ME\CFS then you have to listen to what your body is telling you, otherwise it comes back to bite you in the bum:(
 
Teazle... have fun with your girl this Autumn, and for christ sakes get some catalogs or something sent to you, that post list was not good!!!!:D
 
I have fibromyalgia, have been diagnosed for 6ish years now, its a real pain (literally) and the fatigue is just sometimes riddiculous. But over the years I have learnt what triggers bad flare up and try as much as I can to avoid the triggers :)
 
Can I just ask what tests you all had before being diagnosed, my docs are being very slow and just wondering exactly what else I need to chase t be tested!
 
I had blood tests only, they did not show much. Apparently horses get CFS and are easier to diagnose as their blood levels stay depleted for longer.
I was sent to a specialist after about 18 months and he asked a few questions, poked me around a bit and said something like this, "well its probably CFS, off you go, we cant do anything for you"!!!

I did have some B12 injections and they gave some short term relief but not for long

Hope the lazy folk are feeling positive and non depressed today:)
 
What type of specialist did you see? My GP is sending me to a specialist he's a psychiatrist - not sure they are still trying to send me down the You're depressed route!!

I can't decide what to do, I want to take my pony to a show on Monday it will probably kill me but I am determined, so not sure whether to sit on my arse all weekend waiting for Monday or whether to get out ans try and ride, but if I do it may well knacker me too much. Ongoing inner battle!!
 
I think he was a CFS specialist, i dont remember his name or anything (?) as i said he was not very helpfull and after the visit just got on with things as he gave me nothing constructive to work on. I was never offered a "head doctor", maybe they thought i was past saving!!!!:)
 
LOL past saving - aren't we all!

My problem is I have no diagnosis and this is going on and on and on! I need a diagnosis of whatever it is if for example I lose my job (just been 6 redundancies where I work and as I can't work full time I am anxious as there may be more to come). I also need one just to be able to tell people what is wrong without everyone speculating and having their own ideas which is also veyr annoying!!

I have tried to find someone privately to help but no luck there either, wonder how long the docs can keep this going for me!
 
Yep it does your head in alright, have you looked up CFS specialists on google. Mine was at Mount Vernon hospital in Middlesex which is a bit of a trek for you. It might be worth paying for a private consultation or getting someones name and telling your GP you want a referal to them. It does help to get a diagnosis but i found that even if you say to people, i have CFS\ME they still come up with thier own theories as its still believed to be an "all in your head" illness.
 
I'm waiting to see a rheumatologist now, got my appt through for 20th october!

My doctor thought I had fibromyalgia about 18 months ago but I have been just left to get on with it.
I still think I have MS tho, but nothing showed up on my MRI or LP although I have the symptoms for it, my neurologist said I will probably get it in the future.
 
A rheumatologist was a recent suggestion from a friend of mine.

I have looked in to specialists in CFS in my area and can find none. I used some contacts from work to contact people who do private medical work, I got one name andhave rung and left a couple of messages but no one gets back to me. I have also e-mailed, written and rung my doctor all week asking if he can at least give me a name of someone private to speed things up but all I get is "he has the letters in his pile" , thanks that helps me a great deal. I don't have the energy to keep chasing these people and am at a loss!
 
I've had M.E/CFS for 10 and a bit years now, come from being bed bound, then wheelchair bound, then managing my one hour of horse riding a week to having three horses, many ducks, chickens and a goose amoungst others, and leading a relativly normal life. I'd say im around 90-95% recovered and really try not to let it get in the way of what i want to do.

A little note for everyone though, a coupld of years back my tiredness wasn't the 'norm', i had to pester and fight for blood tests for the doctors to find out i had anemia and was on iron tablets for 6 months. No one knows your body better than you and if something isn't right, go and get it checked out as not everything is down to your M.E!
 
Sophie_Bailey said:
I've had M.E/CFS for 10 and a bit years now, come from being bed bound, then wheelchair bound, then managing my one hour of horse riding a week to having three horses, many ducks, chickens and a goose amoungst others, and leading a relativly normal life. I'd say im around 90-95% recovered and really try not to let it get in the way of what i want to do.

A little note for everyone though, a coupld of years back my tiredness wasn't the 'norm', i had to pester and fight for blood tests for the doctors to find out i had anemia and was on iron tablets for 6 months. No one knows your body better than you and if something isn't right, go and get it checked out as not everything is down to your M.E!
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Glad you are better, i think you are right and if you are feeling really tired etc then it is always worth asking for a blood test, just in case it is anaemia or something that can be helped along
 
Yes anaemia is often a cause, I have had auto immune anaemia all my life but that isn't the problem this time, had my spleen removed to try and cure that one last year no idea if it's worked! But again this makes me suspicious of ME now as the anaemia was an autoimmune problem and as I understand it ME/CFS does have some links with auto immune

WOuld also advise have blood checks before you take iron tablets, I can't take them as my iron levels are always slightly high so have to be careful - always worth checking before you do!
 
Went to see the rheumatologist yesterday and he diagnosed me with Fibromyalgia. I have all the tender spots on my body and my blood results showed some inflammation.

Funnily enough I'm better now than I have been for ages and even managed to walk my daughter to school this week.
Been having hydrotherapy which has helped me loads.
I'm pregnant and have stopped taking all my medication, and the Dr said he will see me after the baby is born in april so he can start treating me then.

I applied for DLA recently but got turned down, but now I have an actual diagnosis I'm going to appeal it.

How's everyone else doing?
 
Im sorry guys but this is gonna be a long one. OH was watching a programme on monosodium glutomate intollerance and said he thought thats what I had. Googled it and fm kept coming up so curiosity got the better of me. Every syptom it gave I have been to the doctors with individually over many years. I wrote them down, took them to doctors (I too was being treated for clinical depression at the time) and told him I think I have fm. He replied So what, theres nothing you can do about it and questions as to whether it even exists. Seahorse this ones for you:- A symptom of fm is restless leg syndrome where your legs (and sometimes your arms) spasm and twitch. I have had this since being a teenager (am now 50) Doc did agree that this has now been accepted as a real illness (was poo-pooed until recently) and gave me medication which I must say has been wonderful. Went home very disgruntled and rang the surgery back and asked if any of other GPs believed fm existed. Appt was made with another member of practise and I went along armed with a list of all my symptoms and all medication I had been given over last few years (to be continued)
 
All tablets I had been given over last few years were all individually related to fm. Hey presto, this wonderful doctor agreed it existed and gave me a hug. Hes told me to go back whenever I feel bad and he will chat to me and possibly change meds. Its horrible but at least I know now theres a reason why I always feel so crap. Got to the point where I felt I must be dying I felt so ill (sorry a bit drama queenish) Sorry for such a long post but big hugs to you all xx
 
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