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Bad M.E diagnosis expireince.

Posted , 10 users are following.

Anoymousx
Anoymousx

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.

1 like, 18 replies

18 Replies

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  • Beverley_01
    Beverley_01 Anoymousx

    Posted

    Hi there,

    My cfs/me is caused by a car crash (trauma) the clinical nurse who assessed me at the cfs/me clinic here had no issue saying that I had symptoms linked to this. However, a supposed private psychiatrist (i needed to see for my claim for compensation ) tried to say my lifestyle was 50 % to blame.

    I myself would ask to see someone else at the clinic. It is a complicated condition we have and it seems this person hasn't really given you any answers. My friend who also has cfs/me went to the same clinic as me and had a terrible experience with their assigned therapist and discharged themself. I had a good experience and felt the sessions were useful but just not enough of them and the clinic was too far away.

    Hope that helps

    Beverley

    • Anoymousx
      Anoymousx Beverley_01

      Posted

      Thanks for your reply. So they had no problem diagnosis you after physical truma? . Because it seems with me they more want to just blame the truma rather than give me a full answer. Like I said I am confused as I was given answer on day and a different reply on letter. When I rang her, I still didnt quite get what they were saying. Problem is I have problem with auditoy processing so quite often wont remember well what they've said. I remember bits of it and she didn't seem to give me an answer either way. Like she didn't really want to commit. This women said she will write another letter explaining it a bit more. Cant relax untill I see the letter. Il have to see what that says

      What happened with your friends expireince, if you dont mind me asking? Did she get diagnosed?

    • Beverley_01
      Beverley_01 Anoymousx

      Posted

      Hi there,

      The specialist nurse was happy to put on paper that I had cfs\me symptoms. My friend, like you ,was dissatisfied with the person they saw because they also were looking in the past for the cause it seemed and wrote things my friend wasn't happy to be shared with the doctor. They also had difficulty getting a new therapist when the first one went on long term sick and then the second was over the phone and in affective. I think that I was lucky with who I saw.

      Benefits wise , the ME Society have a booklet that deals with applying for benefits with this condition. It's worth getting membership as they send magazines every quarter (I think) sadly for me , reading is something I really struggle to get around to. You may be able to access it on line also.

      I think waiting till you get the second letter is a good idea, hope it comes soon.

      Beverley

  • dawn94288
    dawn94288 Anoymousx

    Posted

    Hi!  So sorry for your bad experience with the docs (not uncommon).  If it helps any I agree with you.    If you don't want to say that's okay.  I've been wondering how bad it is going to be when (it will probably happen)  I need to apply for disability from the government.  I'm in the USA.  May I ask what country you are in?  If you don't want to say that's okay.

    • Anoymousx
      Anoymousx dawn94288

      Posted

      Thanks for your comment. Im in uk. Iv had problems applying for pip. I do get esa benifit. But have had problems with the other benifit we can get here in uk. I have a friend who lived in usa and I hear its even harder there. If you are diagnosed you may have better luck than if you are not but I did manage to get esa before I was diagnosed. Like I said im not even sure now if im diagnosed or not

      I know I definatly do have the illness and think I can class myself as diagnosed but when it comes to benifits and stuff I may have a problem as im unaware if i am formally diagnosed now or not. Are you diagnosed? Did u have problems getting diagnosed.

    • dawn94288
      dawn94288 Anoymousx

      Posted

      I see.  Yes, I have gotten the impression that it is harder in the US, but I wasn't sure.  

      Concerning my diagnosis. A general practitioners office didn't know what to do with me.  They sent me to an internest.  The internest told me that he thought I had CFS and that he sent me to  a rheumatologist.  The rheumatologist  diagnosed me with Fibromyalgia.   Since then I have been treated by other doctors for CFS and Fibro.  I think that both the internest and theumatologist were correct. CFS symptoms have a more profound impact on my life, though

      I can't work and so my husband supports us.  I had to give up the job I had.  I'm concerned that someday, he will pass away, and what will I do?  It is at that point that I will need to apply for disability gov. benefits.  Right now it would be selfish to take benefits since we do have enough.  At this point I'm not sure what I should be doing to document my health condition.

    • jenny19687
      jenny19687 dawn94288

      Posted

      Keep diary of what you do, how you feel and what you do to improve i.e. Pacing / Cbt etc. Try to get your doctor to document. 
    • Anoymousx
      Anoymousx dawn94288

      Posted

      I see. So your more diagnosed fibromaylgia but cfs has more of an effect on your life? . how comes your wernt formally diagnosed with Cfs? . I am also suspected fibromaylgia but wasnt formally diagnosed as at that point I wasnt at a good place in my life, which I still think is a bit of a crap reason not to diagnose. I will say it does seem to be particalry hard to be diagnosed where I am.

      You may be able to get them if your very debilitatied but I dont really know how it works in america. have u got any family that could help you if something happened to your husband?

    • jackie00198
      jackie00198 dawn94288

      Posted

      Dawn--I was in a similar situation as you about 15 years ago. I live in the U.S., got ME/CFS, and was unable to continue working. My husband had to support us. I immediately applied for government disability benefits. I made that decision because, even though we did "have enough," I was truly disabled and unable to work. In my view, this is the very reason for disability benefits. I was rejected for Social Security disability on my first application. I then appealed, giving a letter from my doctor and my own letter, describing my typical day. I was then approved. I urge you to reconsider your decision. I'm wondering if it could bsckfire later, if you've gone for x years without applying, then suddenly want to apply. Of course I'm not an attorney and this may not be an issue. But you might want to consult an attorney right not who specializes in Social Security disability, to make sure you're doing the right thing.

    • dawn94288
      dawn94288 jackie00198

      Posted

      Thank you, Jackie.  Checking with an attorney who specializes in Social Security disability sounds like an excellent idea.  Thanks again.
  • wknight
    wknight Anoymousx

    Posted

    Until you get a confirmed diagnosis from a CFS consultant the DHSS will not take you seriously and then you have to get past their own system. You need to google who is the CFS expert in your area and they ask your GP for a referral. 

    Once you have that don;t expect a magic cure, in my experience there isn't one. I went private and saw one of the UK's experts in the field and you would think that would open doors to a treatment plan, absolutely not. 

    I am now well on the road to recovery but I did it all myself using pacing. I equate it to learning to run a marathon when you can;t even walk yet. Took me several years of very careful self pacing. My advice to you is start that right away if you wait for the NHS to sort you out you will wait forever. 

    There are plenty of guides about pacing and its very,very simple to do. You just have to learn to say no to too much activity and at the start its very,very small steps best of luck 

    • Anoymousx
      Anoymousx wknight

      Posted

      Hi.

      I really cant afford to go private sad. Im alredy having to scrape my money together for other things I need to go private for. Im aware there isnt much of a cure but its still very important for me to be formally diagnosed. Like I said there are more services and help avalible for when your diagnosed. I may have been and I may be just confused about what this women ment. shes writting me another letter that she said will explain better. I am achually getting benifit, and was getting it before this 'half diagnosis ' because I have other issues. None of them formally diagnosed. In the process of that but still got esa. I doubt il get pip. X

    • jenny19687
      jenny19687 wknight

      Posted

      My understanding is that pacing does not work for everyone. 
  • wknight
    wknight Anoymousx

    Posted

    You don't need to go private.

    simply research who is the expert in your area. Then make an appt with GP and ask for a referral to Dr x. If that GP refuses session another in the practice. 

    • Anoymousx
      Anoymousx wknight

      Posted

      I did have a referal and saw someone and like I said I was told on the day I had it and now i cant tell if iv been formally diagnosed as the letter is confusing and she didn't give me a clear answer. Do you mean I should be asked to be refered to somewhere else? X

    • dawn94288
      dawn94288 Anoymousx

      Posted

      Hi!  I have been thinking a lot about your situation.  I think that probably you will find when you get the paperwork that you have an official diagnosis.  But, if it is unclear, I would ask the doctor to make the tiny changes it takes to make it a clear diagnosis so that you can get the benefits that you need.
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