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Newbie. Mild/Moderate CFS

Posted , 8 users are following.

kiloran
kiloran

Hell everyone,

After a long time feeling tired a lot, I had some sort of relapse around Easter, kept havin to pull over in my car to sleep for about an hour before carrying on with my 1hr drive.

I'm still working f/t but need to do quite a bif of home working. My fatigue seems to fluctuate greatly day by day and also throughout the day - I need to nap most days.

I am just wondering if anyone knows if mild CFS, ever develops into a more severe form.

Also I have been having sore pains in my feet at night when I get into ed, sort of pins and needles and burning pain.  Has anone had those symptoms? i'm wondering if it is related to CFS, or a seperate condition?

Thanks. xx

 

1 like, 15 replies

15 Replies

  • darren12814
    darren12814 kiloran

    Posted

    If not controlled or paced, CFS will most probably develop into a severe form. Please be careful, pace yourself, look at your lifestyle and eatiing habits, vitamin intake etc...

    Sore pains at night could be for various reasons, dehydration is general 'quick fixer' so may be wise to test that theory first. Check out the NHS pages and search for pins and needles, it has a small section on that.

    With soo many possibilities / reasons of what could be causing both fatigue and pain, you really should speak to your GP about it so they can eliminate everything else. Stopping to sleep on a one hour drive is very worrying indeed, please please please be very careful.

    Are you eating healthy? What is your definition of healthy eating? At what times are you eating? Are you taking any vitamin supplements? Low in Magnesium? Are you drinking enough fluids speaced out throughout the day? High sugar intake? Sleeping soundly all night? Sleeping in an awkward position? etc.. Hundreds of questions should really be answered before you can start breaking down potential solutions.

    • kiloran
      kiloran darren12814

      Posted

      Hi Darren,

      Thanks for your thoughful reply.  I have a diagnosis of CFS  from GP- have had stacks of tests - no probs with any vitamins or magnesium or diabetes. The diagnosis has taken several years tbh.  However GP, also sent me to rheumatologist, but there doesnt seem to b an underlying auto immune disorder - I felt teary when I got this news this week, as to  have regular CFS is really scary to me.  I am frightened of going sick in work and not having enough money.  I dont feel like I have accepted it yet really - and am using energy boosting essential oils etc.  Sometimes though it feels like I work and then only have enough energy to recouperate at w/e's to be ready for work again - which is no way to live.  Mostly I'm not hugely down about it and do have a 'day at a time' attitude.

      I eat v low sugar, hardly any Rocessed foods at all, low GI carbs etc - lots of water and no alcohol I do eat meat.  Most of my fresh food is organic. I am v careful about keeping steady blood sugar.  

      My main symptoms are fatigue / head fog / pins n needles in feet, and hands , but I think less so, at night. 

      I wondered if it is common for fatigue to fluctuate a lot in one day? and vary day by day, even if I haven't exerted myself?

      Thanks,x

       

    • darren12814
      darren12814 kiloran

      Posted

      Ex gf has had the condition for 15 years. She had good days and bad days, her energy levels could change dramatically day by day. She also had the ability to tap into 'adrenaline energy' at times but paid for it greatly the following days after. It is scary to see someone just lose all energy within a matter of seconds.Whats your magnesium level like? It is almost likely that you will be deficient as we are not able to gather as much as needed through day to day food intake. I think the RDI is between 300-400mg for adults but please reconfirm that as it has been a couple of months since I last checked. If you do take vitamins, please make sure you use biofood and not manufactured.

      How are your amino acids?

      Get you hubby/partner to massage your feet and hands to promote circulation. I have seen many people on this site state that it helps quite a lot.

      There are a few things that you could try to manage the symptoms you mentioned. All of my past experience and knowledge is already on the forums but feel free to PM me if you need any more information or clarification on anything. x

    • jackie00198
      jackie00198 kiloran

      Posted

      Yes, it is very common for fatigue to fluctuate in one day, and vary day to day. That's what makes it so hard to track whether a particular treatment is helping or whether it's just the illness doing its thing.
  • JulieBadger
    JulieBadger kiloran

    Posted

    Hi, Yes it is common to fluctuate energy wise in the same day and from day to day with CFS.  I guess it is all to do with how much energy you have available verses what action you are doing verses what action you did 24/48/72/96 hours ago (delayed response to the action which you did).

    My CFS symtoms have varied over the years (I've had it 22yrs). At the beginning I didn't rest & pace - I was 14 and no-one recognised I had the condition.  Over the years up until last year I still didn't rest / pace as no-one knew I had ME/CFS. It's only last year when it has become so bad that I can't ignore it anymore and try to lead as normal life as possible.  I now have it to moderate/severe level.  Working even very part-time is becoming too difficult.  I have no other energy for anything including cooking which others have to do for me as I have no energy for it and have become too forgetful therefore may cause a fire. 

    So I would say it can become worse. Why it becomes worse - we guess? Not pacing? Forever pushing myself? Stress? Was it going to become worse no matter what I did?  To be honest if I had paced / rested over all these years I could of at least said I tried to stop it from getting worse. So maybe that's worth thinking?

    • kiloran
      kiloran JulieBadger

      Posted

      Thanks for taking the time to respond Julie. I am sorry to hear that things got worse for you last year.. It's such a weird condition, to fluctuate throughout the day.  I probably need to keep a better diary - to guage what makes me whacked out.  

      I'm clinging onto full time work at the mo, wondering whether I nee3d a couple of weeks off to try and recharge, or if I will go back and stilll feel bout the same?  I think I am beeing referred to some ME clinic, but wasn't 100% sure what was said at my last consltation.  

      Learning to not worry what others think of my, well not to worry as much, has been a positive outcome of having this condition.  Things like cancelling social events at v short notice; looking 'fine' or 'great' when I see peoplke the next day etc etc, do you know what I mean? x

    • JulieBadger
      JulieBadger kiloran

      Posted

      I wouldn't recommend using up loads of hol leave in one go. It's not the sort of illness you give a quick blast of rest and then you're great for ages. It's more the drip feeding it rest kind of think.  My ME clinic wasn't brill cos they can only recommend scientifically approved methods (that's what I was told). Good Luck
    • kiloran
      kiloran JulieBadger

      Posted

      +Yes, I wondered that about the clinic.  I hoped that I would meet others there?

      It feels like searching for needle in a hay stack!

      Thankyou Julie and Darren for rrsponding. It helps me feel less alone. 

      xx

    • darren12814
      darren12814 kiloran

      Posted

      I agree with Julie, do not use up lots of annual leave in one go. Look at ways of reducing energy, you could potentially save a bit of energy here and there. One example I can remember is the ex started using an electric toothbrush. Normally she ould have to rest for an hour after brushing her teeth but when using the electric toothbrush, she recovered within half of the time. Food for thought.

      Do you drink tea? Sounds crazy I know but look into Matcha Green Tea. That may help with fatique and brain fog. My old boss has been drinking it for years, twice a day and swears by it. I use it every so often when I am feeling a bit rough, like now (new job), glad it is Friday!

      Certain clinics are okay for a bit of resourceful information but the only person who knows you is you, everyone is different.

    • Fidd
      Fidd kiloran

      Posted

      When there's so much poor quality research around CFS, it seems difficult to claim that anything is 'scientifically approved'. This tends to just mean 'whatever we make money from'!
  • sunwyn66141
    sunwyn66141 kiloran

    Edited

    Hi Suzanne,

    Pins and needles and burning pain in your feet is peripheral neuropathy.  It is something you need to see your doctor about.  If you have diabetes it may be the cause.  Not everyone with it has diabetes though, I have it and Idon't have diabetes.  There is no cure but there are pills that do a very good job of reducing the pain.  You ask see your doctor about it next time you see her.

    Good luck,

    Sunny

  • jackie00198
    jackie00198 kiloran

    Edited

    Yes, Suzanne, mild CFS can certainly develop into a more severe form. This can especially happen if you push yourself and relapse. And yes, when I relapsed, I developed pins and needles and sometimes burning pain in my feet, and now even up my legs and into my torso. You really have to take this illness seriously and pace yourself. 
  • richard89308
    richard89308 kiloran

    Posted

    sounds like muscle cramps.  eating salt in your diet can cure that

    Richard

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