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Hi I have just read your first post and to say

I felt a wave off relief is a understatement

I visited my gp today and this is the third visit all my blood test came back with animia been the only one positive

I even tried to show her a video I took off myself on my worst day she wasn't intrested I did say know I am ill I told her off my family history off cancers her response was just because your grand mother and mother died off breast cancer doesn't mean you will my mother died I don't presume I'll get cancer why do you ?my reply was cos I feel like I am dieing I can't raise my arms I can't walk staight my back is making me walk twisted Im so tired I can't function fir more than 3 hrs without sleep my mam hadore energy 2 days before she died than I have by 3pm !! She made me feel idiotic and I cried which made me angry that I let her see me so upset when she clearly thought I was just depressed anyway I am waiting for a appointment at the cfs clinic but it felt like she thought I was just wasting everyone's time

I read your posts and all the people that replied and I feel a little better

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24 Replies

  • Posted

    dear Andrea

    i totally understand your frustation and pleasedo not feel bad for crying in front of the doctor, that shows the reality of the situation to her, doctors whether they accept it or not are here to help us get better, not to undermine us and make us question ourselves, when my doctor said 'we doctors don't treat cfs', i thought - lady you are in the wrong job, i needed help and nderstanding not a bald statement.

    keep talking with the doctors and get your point across, you have the right to be heard and to a decent  standard of healthcare.

    take care

    betty

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  • Posted

    First of all I think it's quite understandable for you to worry when you have a lot of symptoms going on at once an I also think you would then compare the energy levels with that of your mum before she passed I don't think your dr should have spoken to you in this way everyone reacts differently when they are worried it's a fear of the unknown isn't it, but try and be calm Andrea and hopefully you will get seen soon at the dfs clinic I have just had a negetive result ct scan regarding my post viral fatigue diagnosis I'm still dizzy at times breathless all the time fatigued round the clock but I'm learning to try and pace myself and also thinking positive

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  • Posted

    I read that people with ME have even less energy than people dying of AIDS. Do you think you ought to change your doctor? There are supportive and sympathetic ones out there. I had to change mine several times before I found one who believes me and I trust.
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  • Posted

    As a CFS suffer for many years and someone who is now starting to lead a normal life again I can see the problem doctor faces, from their perspective it must be very frustrating as there is no magic people to cure you. 

    I received absolutely no help from the medical community apart from my GP who kept telling me to pace myself an meds to help battle the depression it brings. At the end of the day it was down to me sorting myself out.

    probably not what you want to hear but at least I am feeling so much better now 

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    • Posted

      I to suffer from CFT due to M.E. but no help apart from a diagnose made a few years ago now, not under any consultant so  when it comes to losing DLA ive a fat chance of getting the PIP  as wont be able to tick yes to a lot of the questions asked. Got no proof of the way it affects me, i seem to most ok but this is because i hardly do anything, might go out once a week  to charity shops but hubbys drives me there and home again, often in the shop i cant even bare to raise my arms to look through the clothes on the rails above my head. By the time i get back to the car and gome i feel unwell and nausiated, cant do my housework properly but there you are. But i do put on my makeup and do my hair,  So i get well you look ok, you always look nice, do i have to walk around with no makeup on and my hair untidy to convince how i feel. 
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  • Posted

    Andrea, I think that it's time that you changed your doctor, suffering from this condition is bad enough, even if you have good support but it gets a lot more difficult when you're having to deal with doctors who are ill-informed.

    If you do change your doctor, try toget their views on ME/CFS treatment before you go under their care and choose one who has some real knowledge of the condition.

    Don't despair, it's been difficult for us all in the early stages but once you're under the care of someone who knows what ME/CFS is all about, you will find things a little easier and best of luck, you'll get there... :-)

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  • Posted

    As Georgia says, ther are more sympathetic doctors out there, though I think they can get frustrated as there is not very much they can offer us. My lovely GP did refer me to a neurologist (suspected myasthenia something or other, it wasn't that); a short mindfulness course (very helpful, less stress means less exhaustion); and the local CFS/ME service, which confirmed her diagnosis and are offering me a series of appointments. Not sure how helpful they will be yet, but it seems to be geared up to gently encouraging me to do some activity every day and to advise me on nutrition.

    So please don't give up hope, there is help out there, even if your GP treated you abysmally. And there are loads of knowledgeable and lovely people on this forum to help you too.

     

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  • Posted

    Hi Andrea,

    I know exactly how you feel - and I'm sure everyone else here does as well.  I went through the same.  It's a process to find a doctor that takes it seriously but completely worth it when you do.  It;s not easy sadly, and it took me 10 months to get a CFS specialist - and even then my GP wouldn't say I had it!!

    The sad thing is there is no test for it when it comes to GP's because it's beyond the realms of what they do and know.

    I decided to go to a nutritonist with experience with ME and it was the most amazing thing.  She understood it, and she said "we will make this right".  It was all I needed.

    Perhaps try and find one - they understand it all much better.

    The other thing I have learnt recently is that yoga and breathing exercises might be saving my life!

    There are many options out there for you to feel cared for and for you to feel hopeful - don't worry!

    x

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  • Posted

    Oh Andrea its awful isn't it just trying to explain to someone how you feel.!! I've been going through the same thing for the past four years. Its only that I seen a different gp two weeks ago that gap made all the difference and now finally they are taking notice of how I feel and investigating it. Its great that they have referred you to the cft clinic at least they will take a good look at you and listen to you good luck x

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  • Posted

    Andrea,

    I too started crying the first time I went to the doctor and the nurse responded with acting like I was stupid coming to the doctor for such a thing.  She told me, "Everyone gets tired". I was 47 at the time and I knew that I had never felt like this before.  I was far from just being tired.  The doctor at that office sent me on to a different type of doc (this is in the USA). And I never went back to that doc about my CFS and Fibro even though our family had always loved that doc.  Two years later, when I was quite a bit  better but still struggling I went back to that same doctors office to do something I had always promised myself I was going to do.  I had promised myself that I would tell the main doc there, that if they ever had another patient come in who was mostly bedridden and presented with my other symptoms to please give them my phone number so that I could help them.  That is when he told me that they had something like 15 patients come in every month who were just like me; but they just did not know what to do to help them.  Of course there were by then a couple of prescriptions that could be prescribed, but nothing to cure the patients.  He told me what a mystery this condition was to docs.  I actually was shocked.  I had no idea that so many people were struggling the same sort of way.  One thing is for sure, you are not alone.  Since then, I have found some answers.  And I really do beleive that the medical establishment is coming up with more.  Best wishes to you!

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    • Posted

      Was wondering if you could elaborate on anything that you have found that works for you, i am suffering really badly and havent found anything yet 
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    • Posted

      Why don't you tell us what your worst symptom is? So many things have helped and are helping me that I couldn't list them all, but if I knew what you're aiming for at first I could perhaps recommend something.

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    • Posted

      Sore throat after tonsillectomy gone wrong two years ago -constantly dry. Really annoying as I have to drink alot.

      Got glandular fever at the same time as my getting my tonsils out and am constantly tired all the time. Doesn't matter how much o sleep or what I do, I'm always exhausted. Can no longer function properly and it's ruining my life . Main goal would be to not be so tired all the time.

      Thanks

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    • Posted

      There are herbs to help with the fatigue, like Damiana, Ginseng, Gingko biloba and Kola nut, or Kola vera or nitida (it's not a nut; it's from a berry) and it's basically like herbal cafeine in effect.

      Lower carbs in the diet helps me and higher fat. I think the sugar in carbs and fruits makes my brain fog worse and makes me more fatigued.

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    • Posted

      I must add that I'm not saying no fruit. I've changed the fruit I eat to lower carb content ones and I've cut out the fruit juices I was highly addicted to.

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    • Posted

      As Georgia commented, so many different things have made a difference, but I am happy to share.  Also, I like her idea of finding out from you if there is anything in particular you want to overcome.  For instance, are you having problems with insomnia?  I know you mentioned fatigue.

      I will share under a post called, What Has Helped Me

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    • Posted

      Thanks!  I posted, but they didn't print it.  The site said that my message had to be evaluated.  Maybe it was too long!  LOL!

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    • Posted

      Oh no, they do my head in with their over the top moderating. rolleyes

      Lets hope they decide to allow it.

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    • Posted

      Yes, I can hope.  I have never noticed one of the messages that they have moderated subsequently appearing.  Must probably I'm just missing it???  Have you?

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    • Posted

      Did you mention any products or health professionals by name or anything? I mentioned a scientist earlier and it was moderated.
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