Just diagnosed

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Hi everyone,

I was just diagnosed yesterday via a letter, no instructions on what i should do next or info or anything ! I feel totally lost and devastated, just need to talk to someone before i explode.

Thanks for reading my ramblings.

Krissy

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17 Replies

  • Posted

    I understand how you must be feeling Chrissy, although for me it was a relief to get the diagnosis because I'd had for two or three years not knowing what was wrong with me, apart from putting it down to Candida.

    Following my diagnosis occupational therapists came to my home for a while and taught me what they knew about it, mainly pacing. One taught me simple yoga to do on the bed. The main thing that helped was having someone understanding to talk to in my home.

    Finding an understanding doctor helped, because although they don't have a cure yet he's been willing to try things out when I've asked, such as giving me Thiamin for my Thyroid gland and Vitamin B compound strong.

    There are lots of things you can do to improve certain symptoms. I've improved several such as I don't get the headaches now and my digestive system's functioning better than it was. Healthy diet and herbs really help me and there's a guy in here who says he recovered after 10 years of ME with diet.

    An important first step, I think, is to get someone to care for you in place if you don't already, so you can get enough rest and sleep and reduce your stress levels through not having to worry about chores etc too much.

    I hope you get lots of helpful responses!

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    • Posted

      Hi GeorgiaS,

      I too have been having tests for 3-4 years now and should be happy it's all over, which i am but i have spent all this time saying " i'll do this, that, when i'm well" and have always believed i would get better. I was pregnant and had a 1 year old when i got really ill and have so much guilt about not being able to do the things mums do as i did for my grown children and always believed i'd make up for it when i got well but now that will not happen.

      Oh doctors.......hmmm.....massive long story there but basically not had a good time with them at all and don't have many more in my town to choose from.

      My husband is my carer, which i hate, not because he's bad at it or anything but because i hate the way the dynamics of our relationship have changed.

      I am following slimming world (lost 5 stone 4 pounds) and we cook everything from scratch so my diet is great and i do feel the benefit of it to a limited amount.

      I take gabapentin and amatriptaline and they have been a god send. I have gone from having a migraine 3-6 times a month and sometimes continuously for weeks on end and fits a couple of times a week to only 2 migraines and 1 fit in the last two years ! The downside though is i recently had a sudden alergic reaction to the gabby and am weaning of it and of course as i do the nerve pains and migraines etc are increasing booooooo !

      I think what i can't seem to do is accept my situation and i dont know how to ??

      Thank you so much for taking your time to reply to me and i hope you ate keeping well.

      Krissy

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    • Posted

      I went through several doctors before I found my good one. I understand you running out! In the end a pharmacist in the chemist told me about him because he'd been so understanding about her Fibromalgia. It's worth asking chemists if they know of a good one.

      An awful experience with one doctor was when I asked him for a letter of support when I was applying for DLA. He wrote me a letter and it said, and I quote 'In my opinion sick people should work!' Ouch! cry

      I'm just like you in that for 10 years I've been saying to myself and to other people 'When I get well I'm going to...' with no real doubt that one day I would. But as times gone on I've been starting to think more and more 'What if I never get well?' And that's a horrible feeling.

      I don't think I've reached an acceptance stage that people talk about and I don't know how to. For me it seems like giving up the fight but I don't think they mean it like that.

      My doctor gave me amytriptelene because it helps some people but I only took it for 2 or 3 days because it made me even more tired. Is that what happens at first? I'm not sure if I should've carried on with it; how does it benefit you?

      Must've been really hard coping with a 1 year old and I'm sure you did your best; it's not your fault you're ill! I used to beat myself up because I couldn't cook my teenage boy's dinner every night and he'd eat junk food some of the time.

      I understand about roles because I wanted to be the one doing things for him so I never asked him to help me enough when he lived with me. I should have got more help from him and not felt guilty; I know that now. It would've been good life training for him and I needed it.

      I'm not too bad at the moment; hope you're doing alright. 

      Georgia

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  • Posted

    I will hopefully write back tomoz.  Rest rest and more rest.  I'm also on Foggy Friends a fab ME forum.  

    Take care

    Sally x

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  • Posted

    That's about the saddest, most infuriating thing I've heard in a long time: receiving a diagnosis via a letter! Where do you live? Can you tell us more about the circumstances and your symptoms when you have the energy? It's totally normal for you to feel lost and devastated with this diagnosis, much less the way you received it. The Internet is a great source of information on ME/CFS, as long as you get it from a reputable website. Google "CDC Chronic Fatigue Syndrome" and "Solve ME/CFS Initiative." The CDC is the Centers for Disease Control and Prevention here in the U.S. The second website is the home for a major advocacy group in the U.S. So sorry you're having to deal with this. 
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    • Posted

      Hi jackie00198,

      I live in Wales.Tbh it's nothing that i don't expect from the medical profession. I have been let down immensely by everyone apart from the sweet, lovely nurses in the walton hospital they are wonderful ! I have been waiting, actually fighting for a diagnosis for about 4 years now. My symptoms are numerous but main ones are, nerve pain in all of right arm and hand of left arm, right arm is rubbish and both hands jump and throw stuff. I use a walking frame at home due to spinal stenosis, let weakness and balance problems.I used to have fits and migraines a lit but due to gabapentin amd amatriptaline i have only had a few in the last two years ! And of course i am tired well my whole life lol. I have read conflicting information on the net so decided to make an appt with a new doctor at my surgery and let them explain things.

      Thank you for replying to me it is much appreciated.

      Krissy

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  • Posted

    I concur with Jackie and Georgia is also such a great source of info and support.  Whoever would give a diagnosis in a letter is outrageous.

    If you read through some of the posts on this site you can find loads of helpful info.  I'd also suggest that if you're open to counseling, ask your doctor for a referral to someone who works with people with chronic illness.

    Also, I have a few books that I can recommend.  The Chronic Illness Workbook is really good because it helps you understand the stages you may go through.  One gem I got was, allow a little time every day to grieve.  Your life is different now, for however long it will be, and you will feel a huge sense of loss.  The other is Living Well With A Hidden Disability.  I don't think I made it all the way through this one.

    Hang in there, and keep communicating as much as you can.

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    • Posted

      To add too nannettesea 'Recovery from CFS: 50 Personal Stories' by Alexandra Barton is a very encouraging book. Each person tells their story and explains what helped them to recover. They also give useful website links and helpful books.
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    • Posted

      Should have said there's a website and Alexandra Burton will send you a new recovery story regularly by email if you sign up. Reading these stories really lifts me up and keeps my hope stronger for recovery. razz
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    • Posted

      Hi nannettesea,

      I have had counselling before and tried to walk down that avenue only to be told by a lady working for a charity to help women with mental health issues that she didn't believe in counselling and that i should join some of their classes (art, crafts, etc)

      You hit the nail on the head there, i am greiving....for the person i was....the life i had.....the mum i was.....the wife i was....the granddaughter i was etc. Somehow i can't grieve though it's like part of me wont allow it ?!?!!? Strange creatures humans lol !

      Thank you so much for your reply

      Krissy

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  • Posted

    Hi Chrissyboo.

    I also got my diagnosis in a letter, but at least the letter went on to explain what would happen next ..... I would get an appointment for a group educational session and would then see an occupational therepist.  Having that kind of news (even though it is what I expected the diagnosis to be) by post and no-one to answer questions was very alarming none-the-less.  All I can say is that having this forum to turn to was the best help I could get at that point and actually still is. But in some ways the news was welcome because I had been ill for almost 9 years and could explain to no-one what was wrong with me or why I just couldn't 'do it' anymore no matter what or how hard I tried.  And the doctors I had seen along the way were either useless, unhelpful, patronizing, rude, to downright obnoxious, until, finally, I demanded a referral to a specialist; which i got.

    I would suggest you contact the person/practice/service who sent the letter and ask them: "What happens next?"  See if you can book an appointment to speak to someone.  It depends where you live on what type of service they can offer you or refer you on to.

    I'm afraid now it is more a matter of learning how to live with and manage the condition. Don't give up hope of better times to come. People do improve and even recover from this and I for one live in hope of that. I can recommend reading 'Love never fails' by Adrian Rose. A book of hope and story of one man's illness and recovery.

    Wishing you well.

     

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    • Posted

      Thank you very much for your reply. The letter was from a very rude rheumatoligist who barely looked up from his notes the last time i saw him. I feel really low right now but will try to pull myself together, just feel that the light at the end of the tunnel is gone

      Krissy

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