Bad M.E diagnosis expireince.

Hi. This may be a bit long.

I have been suffering with all the symptoms of cfs on and of for years. The last year it has been the worse. Iv had everything else ruled out. I finally was refered to the cfs service. (Where I live you cant be diagnosed by a normal doctor). Doctors had told me they were sure I had either cfs or fibromaylgia for years. I was finally refered to the service after years of symptoms. I thought I had fianally been given diagnosis as on the day she told me she I had probably had it since I was 12, even though I was active at that age, It could have been the start of the problem as I had chronic pain, dizziness, headaches and that came after a bad reaction to something and all my lympth nodes swelled and I had flu like symptoms and was left with the dizziness and headaches since that day but I was always energectic apart from when I had the bad reaction and I became sleepy a lot, which at the time was extremly unlike me, but then I managed to bounce back energy wise for many years.

the last couple years it got worse and about a year ago I got to the point, I couldnt walk properly because I was so weak, had pain, felt very dizzy and sometimes breathless. although it was mainly the weaknesses stopping me walk.Iv had to use a wheelchair at times. I still cant go very far without one but I had such bad social anxiety about using one so I dont go out much. I have all sort of other problems. Basically I have every symtom of cfs. I know 100% I have this. so what is strange is on the day I was diagnosed, I was told I did have it. I was relieved to finally have an answer and feel heard. Then I get the letter and I was confused as it said I had 'M.E type symptoms and my symptoms are invasive. So on one level she is explaining how debilitated I am and then she puts M.E type symptoms. I Didnt understand what that ment but a friend said to ring her and ask if I was really diagnosed. I literally still dont understand whether I was and she wouldn't give me a straight answer. She said it wasnt that straight forward because of my past, but she wasnt saying I didnt have it but wasnt saying I was diagnosed either. Like I do have severe fatigue, but diagnosing me with M.E /cfs isnt straight forward because I have past truma.- but truma is a cause of cfs!

My truma was mainly illness as a child and neglect and bullying during my teens. I know a lot of people with truma and they may end up depresed and tired but not full on cfs. They may not want to go out but once there out they can walk physically fine and anyway truma is achually a cause of M.E. So this makes no sense to me. to there is a difference between having some truma fatigue and being so bad you can hardly walk years after the truma and you have every other symptom. Let me say I really dont care about my past anymore. All this 'truma ' (which I no longer feel bothered about, I get sad about it but im sad about how my life has turned out because of it not the achual truma) happened years ago. I had a lot of therapy to deal with it and I was physicaly more functionial when I WAS very effected by it. Its not like I came away from truma and then that was it. I was then fatigued ever since. My symptoms came and went for a nunber of years. Of course truma could be a cause of my cfs but I feel its a cop out to try and blame it just on truma. iv got so much better over this 'truma 'I went thorough but im physically worse.

I explained that I still had the symptoms when my life was very stable and the truma was gone.it ruined a good situaion for me so if I could change it and it was going to go away, it would have done. Also I was someone that was always active , no matter how depressed or trumatized I so called was. my way of dealing with stress was to go for a long walk or doing something active, So being fatigued isnt something apart of my character. Its extremly unlike my natural self.

I feel crushed now. I feel invlidated. I know I know wont get the help from services I need now. I feel if I say that to the service, they will think I just want the diagnosis to get benifits or whatever but I need them because of my illness and when they (services ) see thats shes put M.E type symptoms they could turn round and say 'well youve not really been diagnosed'.

Has anyone had this sort of expireince and what should I do? Having a half diagnosis isnt good enough for me when this is at a bad level. its not like I just have some mild fatigue. Its moderate and can be severe at times. Its like saying to someone "you have cancer but were not going to formally diagnose you" or "you may have had a heart attack but it was caused by stress so were just going to diagnose you as having chronic stress"

Sorry this was so long. Thanks for any replies.

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