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just been told i have cfs and i feel alone

Posted , 5 users are following.

jade43146
jade43146

I am always so exhausted and in pain that my life has gone from being able to do things to having to rest all the time after doing hardly anything. I wanted to see if by talking to anyone would help as i feel very alone.

2 likes, 17 replies

17 Replies

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  • david59662
    david59662 jade43146

    Posted

    Hi Jade, i joined this forum for the exact same reasons and it has been a tremedous help. I'm sure you'll meet some really friendly people on here with great advice. I have CFS. I became unwell Nov last year with a viral like illness, recovered a little but was left with ebilitating fatigue. I was formerly a triathltete. I quit work because of it all as everything just got too demanding. I've been investigating my CFS diagnosis almost full-time to try to work out a recovery plan. People can and do recover from CFS, we have to remembe that. My best theory as to what actually CFS is, certainly in my case is adrenal fatigue. There is a good book about this if you want to know more. I can usually maged 30mins walking per day and that's it, i have to rest, cook meals etc no time for anything else but no energy. Energy has to be used sparingly.

    How old are you and how did you come into it ? I hope your friends and family can understand and be supportive. so far 11 months for me, it's been really difficult. i'll never give up trying to get fully well.

    Thanks.

    • jade43146
      jade43146 david59662

      Posted

      Thanks david for messaging me back it means alot. I started with the fatigue 2years ago when i had a miscarrage and sinusitus where i had to be hospitalised as it was that bad, i was back and forwards to my gp afterwards as i was so tired i suffered from depresion so they just put it down to that plus i would go days and be ok then days where i was exhausted. About 8 months ago my energy levels got worse and i didnt feel depressed so after more bloods n visits i then got pains all the time in my legs and arms,awful headaches,brain fog and now i have to rest or sleep every single day now. Its good to know what it is but also so scary and yes i have a couple of friends and family that are being great with me yet others arnt as they dont understand or dont want to. Im 30 by the way and i just wish i had my energy back. Im sorry you have cfs aswell hope your ok
    • david59662
      david59662 jade43146

      Posted

      Hey Jade, i think it's imporant to focus on what you CAN do to change your situation. So far, the thing i feel that have and are helping me the most are adaptogenic herbs, i take them everyday, they mat not be a cure but i feel with consistent use they can help the body. I do feel the majority of CFS folks like us have kidney/adrenal insufficiency. My GP is always throwing anti-depressants at me, but i am not depressed enough to want to use them. There are lots of reasons to be hopeful, try and get your friends and family on board to help you. Try some herbal formulas, which i stareted using last week and feel something from them. So folks with CFS to me it almost always follows a period of extreme stress. The part of the body that deals with stress is the adrenals and they can take a long ol time to heal properly,(2 years max) even with correct diet/supps. I think CBT could help you and physiotherapy, both i am about to begin.

      Emis Moderator comment: I have removed several company/book names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service .

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • JulieBadger
    JulieBadger jade43146

    Posted

    Hi Jade, you're not alone.  We're here.  Spread all over the world.  I'm in the Uk and it's amazing to be talking with a fellow ME/CFS sufferer in America & Canada.  I'm wondering if the depressional emotional side of ME/CFS is just a bit too high for you at the moment?  I recently had my depression based medication changed and I found a huge change to my emotions while they were being adjusted to the right amount for me.  When the medication level isn't right I can be suicidal at it's worse.  I can be losing my temper at a flick of a switch with my kids.  Now it's mainly right I feel so much less depressed (unless u catch me still awake at 1am). 

    As time goes on it will become a little easier to accept.  However, I think we always feel left out due to what we haven't got the energy to do.

    Keep on this forum and you'll see there are people here who too have ME/CFS x

    • jade43146
      jade43146 JulieBadger

      Posted

      Thankyou julie i think because ive just been told i have this and the not knowing for how long ive got alot of emotions going on. I hate letting my son down the most because i have no energy to do what he would like to do, i get very frustrated with myself and then that gets me down. I need to let it all sink in first and stop remembering what i used to be like as that makes me worse x
    • JulieBadger
      JulieBadger jade43146

      Posted

      That's not an easy thing to do.  They do say to concentrate more on what you are achieving.  In severe cases of ME/CFS they are bed bound, need feeding by others and help toiletting.  I am having a bad day today. Struggling to read the emails, but I am dressed and moving around the house slowly.  Others need to cook my meals for me everyday but I can still manage to make a cup of tea and do toast.  Therefore I know I can't do what I was able to do, but I could still be worse, so that thought helps me cope.  Just have to remember to not look back at the end of today and work out what I achieved todaywinkx. 
    • jade43146
      jade43146 JulieBadger

      Posted

      Thanks julie im sorry your having a bad day. I am learning to do what i can do do each day and have lots of rests inbetween and on my good days dont do so much and take rests all the time. I do have good days where i can get alot done but then i am exhausted for days afterwards. I know i have to listen to my body and have the rest and take it easy throughout the day. I didnt realise people can get so bad with this illness where they cant even go to the toilet on their own. hope your ok x
    • JulieBadger
      JulieBadger jade43146

      Posted

      There are some video clips made by severe ME/CFS sufferers to raise awareness - it's quite shocking. Well done to you for remembering to still pace on good days - I'm rubbish at it lolx
    • jade43146
      jade43146 JulieBadger

      Posted

      Ok ill have a look thanks. Ive put a few things on my fb page about cfs just raises abit of awareness i suppose x
  • Lizzlizz
    Lizzlizz jade43146

    Posted

    Hi jade,

    thanks for your honesty, I'm so sorry you feel so alone but you are not. I am the same age as you and my life is completely on hold and my long term boyfriend is still in Norway where I was living before this all got to much and had to move back home with my mum. So I know how tough it can be. Don't give up everyone here is struggling and looking for answers and here to help with any advice we can. Everyone is different and the cause of cfs is not always the same. Remember cfs is a syndrome which means a collection of symptoms it is not a diesase in itself, it's a recognised manifestation of something that is still not known. If you would like to hear  more about my story and any research I've looked into I will be happy to chat with you via private messaging as it not allowed to post links on the main forums. 

    • jade43146
      jade43146 Lizzlizz

      Posted

      Thankyou lizzlizz sorry that you cant be with your boyfriend that must be very hard for you but glad  you have your mum to help you and take care of you. Yes i would like to know more please if you dont mind x
    • Lizzlizz
      Lizzlizz jade43146

      Posted

      I'll be in touch tomorrow - getting a bit worn out now and I'm lucky enough to have my boyfriend visiting for a few days so trying to save all my energy to be able to spend time with him smile
  • david59662
    david59662 jade43146

    Posted

    Jade, check out THE SYNERGY TRIAL that is being carried out in the U.S, the first pharmaceudical based treatment for CFS that uses low dose ritalin with mitochondrial nutrients. My GP in the UK has told me he will fully support me doing this should the results be positive. There is a good youtube video all about it.
    • david59662
      david59662 jade43146

      Posted

      No probs, i was new to CFS like you, 11 months later with the help of people on this forum i know so much about it and feel like a CFS expert.cheesygrin

      Start to try some of the herbals asap for a month and see if you feel any improvements.

    • Lizzlizz
      Lizzlizz david59662

      Posted

      Hi David, 

      Would you mind messaging me the links about the synergy trail?

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