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CFS? Or MS? Positive Advice Please :)

Posted , 7 users are following.

CherylGH
CherylGH

Hi All,

So I wanted to ask for advice on those who suffer from CFS/M.E/Fibromyalgia.

I have recently been referred to the CFS clinic as I have been suffering from a whole host of different symptoms including chronic fatigue, sore throat, aching neck and back, dizziness, ataxia, problems with speech, blurred vision, tremor, weakness and the list just goes on and on . I am a 32 year old female and have been unwell most of my life on and off, but recently after a very bad case of long term depression for 2 years ( which I have now come out of) has now left me feeling so unwell from all of these other symptoms.

I wanted to start a family but now can not see anyway of doing this feeling as I do now, so I am desperate for any advice on how to get better from this disorder. Please can we only comment positive stories to help as not sure I can take anymore negativity at the moment. Thanks

0 likes, 22 replies

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  • david59056
    david59056 CherylGH

    Posted

    okay well i had it for ten years from my mid thirties when it was yuppie flue so a long time ago. The only thing that worked like magic was dry heat in Spain. I now live in the south of france. The ME has never returned. Although as I am now an old fart i suffer from arthites and a bad knee but i cannot complain i had anther exciting international career after i recovered from ME. So be positive. Good luck

  • charlie19
    charlie19 CherylGH

    Posted

    Hi Cheryl. I have suffered now for almost 17 months, although I have had many of the symptoms to a lesser degree for about 13 yrs....yet prior to the past yr or so I was exceptionally well, fit and active with energy to burn. I really struggled last yr for about six to eight months then I started being able to do more. Had more energy, started to feel less depressed as a result, however I have never had a completely symptom free day. Anyhow I was able to return to work after about 10months. I have just clocked up 7 months back but each day is a struggle still. I have become a stoic, but I am now in the midst of a horrible crash with awful weak and sore legs with neuro stuff. My hands are not much better. Not sure if this helps.

    • CherylGH
      CherylGH charlie19

      Posted

      Hi Charlie,

      Similarly to you I feel I have suffered with it for a long time as I have had periods of this on and off for years, however the severity of it this time has gotten a lot worse and I too am suffering from a lot of neuro problems and pain.

      May I ask was there anything particularly you did to help your symptoms the last time around?

      I am so sorry you are having a flare up again that must be very disheartening, but you have got through it before so fingers crossed you will again.

      Thanks for your reply.

  • Beverley_01
    Beverley_01 CherylGH

    Posted

    Hi Cheryl,

    It is good news that you have been referred to cfs/me clinic. They can help you with symptoms management and will help you to understand resting and pacing which helps with symptoms.

    I take feroglobin which doesn't take away symptoms but lessens them somehow? Not always as I have 4 children and I don't have a partner so the demands of that take a toll sometimes. They are older but believe me you never stop being "mum"!

    Take someone with you to your consultations. Take a list of things (like the one above) with you. Explain all you can and plan to rest afterwards.

    If you are planning on having children, make sure your partner is 100% onboard and can do the lions share of the caring on occasion. As say hitocat states, some people's cfs/me changes after pregnancy but, I myself like to prepare for all eventualities with this condition.

    Beverley

    • CherylGH
      CherylGH Beverley_01

      Posted

      Hi Beverley

      Thanks so much for the reply.

      Yes I am looking forward to going to the CFS clinic to learn how to cope with this as I have no idea at the moment, I just trying different things but not a lot is currently working.

      I took feroglobin at the start of this too but the doctor told me not too as he said it could be dangerous to take to much of something I dont need, however it did find it helped, do you think I should carry on?

      I am desperate to start at family but I feel guilty not being able to do everything for a child when I am particularly bad, my husband works full time and again it makes me feel guilty if he has to do it all, so really not sure what to do but I feel like my whole purpose in life is to have a family ( I know that sounds dramatic but its how I feel) this is the part that's getting to me the most and making me feel low.

      sorry to unload that but I need some ray of hope that I will be able to be a mum but I'm just not sure if that's me being selfish?

      is there anything you find other than feroglobin that helps you? any diet help ?

      Thanks

    • Beverley_01
      Beverley_01 CherylGH

      Posted

      Hi Cheryl,

      I cannot see why the Feroglobin would be dangerous. It isn't giving more than the recommended daily amounts for Iron or anything? You could always ask the doctors again.

      Starting a family is a huge commitment for any couple and more so when there are added issues. one of my friends has a walking difficulty and she thought long and hard about starting a family because of this and had the conversation with her partner because they would be doing a lot of the carrying and picking up and the idea of dropping the baby was a huge fear for her. In the end they decided it would not possible to after the partner became ill. Although he's recovered now. It is a decision you would both need to think about. Do you have family/friends who could help? could you afford help if needed?

      There's a user with cfs/me on here who has 4 children of differing ages. Her youngest is a toddler and I know that this can be a difficult time when in full health as they have boundless energy! I know she has posted how hard it can be sometimes even with her a husband. I am not sure of your age and whether you feel the biological clock ticking? could you give yourselves a little more time to think about it and see how the cfs/me clinic can maybe help?

      I am wheat and diary free, vegetarian and organic as much as I can be. most of this I was pre cfs/me.

      Beverley

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