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I need an opinion...

Posted , 7 users are following.

kyra_83000
kyra_83000

For about 3 years now, I have been feeling overly tired. I never thought anything of it until I heard about CFS. I looked into it and it described how and what I was feeling. I went to the doctor and had a blood test and they told me it was nothing; just lack of vitamin D. Have I had a lack of Vitamin D for 3 years? Could I still have CFS? Should I persist with the doctors? I've started taking multivitamin tablets to help and I'm eating more fruits and vegetables but it isn't helping. What should I do?

1 like, 14 replies

14 Replies

  • Jk1952
    Jk1952 kyra_83000

    Posted

    If you're not happy you need to tell your doctor. Maybe you could be referred to rheumatologist. If it is CFS he will be able to diagnose it. There isn't a blood test for it. 

    Hope you get the help you need.

    regards.

    • kyra_83000
      kyra_83000 Jk1952

      Posted

      I want to go to the doctors but my mum says I have to wait to see if I notice a difference. I also don't have the money for a rheumatologist.

  • Beverley_01
    Beverley_01 kyra_83000

    Posted

    Hi kyra,

    If you look up vit d deficiency-tends to need a higher dose of vit d for a few months and exposure to sun. Check other posts in general health/other conditions on here there are lots of posts re vitd deficiency. If Cfs/me, for many there is a trigger of some type, can you pin point anything that came around time symptoms started? Virus, trauma?

    Best wishes

    Beverley

    • kyra_83000
      kyra_83000 Beverley_01

      Posted

      Well around 3 years ago, my father told me he didn't care about me and left my mother and I. Could that have caused it? I have also been out in the sun almost everyday for the last 2 months and have been taking vitamins for a while hoping that they make a difference.

    • Beverley_01
      Beverley_01 kyra_83000

      Posted

      Hi kyra,

      Sorry to hear that your father felt the need to say such a think to you and left you like that. Was that just around the time your symptoms started? I know a young woman whose cfs/me/fibromyalgia was triggered by a difficult break up with her boyfriend. Mine, from a car accident. If you Google causes of this condition, there are quite a few but, for most on here a virus seems the trigger. Also, many people with this condition seem to have low vit d as an extra part of the symptoms. I'm wondering if it's worth asking the doctor how low your vit d is and whether you need a separate higher extra vit d amount if it's very low?

      Best wishes

      Beverley

  • jackie00198
    jackie00198 kyra_83000

    Posted

    Go to the "solve ME/CFS Initiative" website. They have lots of information. You can also go to the CDC website (CDC is "the Centers for Disease Control and Prevention," also here in the U.S.) If the symptoms listed on those websites resonate with you, you should go to, preferably, an infectious disease doctor knowledgeable in ME/CFS. A rheumatologist may also be ok. You may want to print out a list of ME/CFS symptoms from either, or both, of these websites to take with you, though that's not as critical if you see a well-informed doctor. You'll really have to advocate for yourself and not buy into the "it's all in your head" stuff that's often recited by uninformed GP's. In my case, I was told I just needed a vacation. Believe me, you'll avoid a huge, lengthy, frustrating medical merry-go-round if you deal with the appropriate doctor.

    • kyra_83000
      kyra_83000 jackie00198

      Posted

      When I went to the doctor the first time, I had a list of symptoms with me but after waiting for my blood test results, she phoned up my mum and said that it was nothing. Do I need to go to a different doctor? Should I persist with the one I have?
    • jackie00198
      jackie00198 kyra_83000

      Posted

      You're wasting your time with a doctor that treats you in such a dismissive fashion. Get a copy of your blood test results and see an infectious disease doctor with a knowledge of ME/CFS. A second choice is a knowledgeable rheumatologist. Others in this forum, who also live in the UK, can perhaps give you a clear idea of how to do this. Above all, don't let anyone tell you your symptoms are nothing. They are not nothing, and it's extremely insulting to be told that. Sadly, this is a common reaction of the medical community, who are largely ignorant of this illness, and arrogant to boot.

    • jackie00198
      jackie00198 kyra_83000

      Posted

      I live in the U.S. When I have bloodwork, I simply call the doctor's office and request a copy of the results. They actually email the results to me. I'm sure there must be a similar way to get the results in the U.K. Call you doctor's office, ask for the results, and see what his office says. Or have some family member do this for you. Be persistent and assertive. Surely, as in the U.S., it is your right to obtain the test results. And those results are important to take to a specialist, so you don't have to repeat the tests. When I wanted to get a diagnosis years ago, I brought by test results to a specialist, he asked me several questions about how I was feeling, and diagnosed me with ME/CFS within about 20 minutes. He was 100% sure I had the illness, and he was right. Previously, my GP had told me I just needed a vacation, implying it was all in my head. I tend to be a pretty assertive person, even when deathly ill. I was disgusted with his dismissive attitude because I knew I was ill. Because I became my own advocate, I got a diagnosis about 3 months after I became ill. This, even though "they" say you have to have the symptoms for 6 months before a diagnosis can be made.

  • Patrickgeoffrey
    Patrickgeoffrey kyra_83000

    Posted

    CFS is basically a name for a group of symptoms,a diagnosis is given when all other possible diseases have been eliminated with testing.Google chronic fatigue syndrome Wikipedia has a wealth of information.

  • olivetree
    olivetree kyra_83000

    Posted

    Hi Kyra

    First of all, the presence of CFS/ME will not show up in a blood test because there is no known test for it. It's more of an illimination process to count out the many possible causes for your symptoms - so if the doc says there's nothing wrong it just shows you do not have any of the diseases they tested for.

    Second, i just thought it would be helpful to know that I also had the same thing - low on vit D. The doctor prescribed a high dose to take for a month and then a lower dose to take thereafter. He almost laughed as he assured me I would feel a lot better once my levels were recovered. I didn't. It was a further year down the line before I got confirmation of CFS/ME.

    Also don't be tempted to do more excercise in the hope it will do you good. Have you noticed that a day or two after doing a sport you 'crash' - become unwell with no energy?  Muscles aching more than they ought to? This is typical for CFS/ME sufferes.

    Altogether it took me 9 years from the point of the onset of illness to a diagnosis. Be persistant. I would hate for it to drag on that long for you.

    • kyra_83000
      kyra_83000 olivetree

      Posted

      Thank you. I'm going to go back soon and probably have another blood test. I hope they will believe me.

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