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CFS symptoms

Posted , 8 users are following.

david59662
david59662

Hi all,

I've had CFS for just over one year now. I just wanted to know from fellow sufferers do you find your CFS is MUCH worse in the morning, like first thing as you get out of bed ? This happens to me, for the first 5 minutes it's like my legs just don't work properly, get into a panic about it. I just feel so not right. Also do you feel you improve as the day progrsses, at your best from 11pm, then feeling more tired at arounf 5-6pm ? This has been my general pattern. How mamy of you have seen an immunologist and did you feel it worthwhile ? I have yet to see an immunologist.

Thanks for reading

0 likes, 36 replies

36 Replies

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  • KathS
    KathS david59662

    Posted

    My husband has to get me out of bed too each day around midday - before that is nigh impossible.  Like you, I'm like a zombie, wracked in pain and very weak.  I've to force myself not to fall back into bed.  I have gone back to sleep sat on the toilet more than a few times too.  Having a shower in the morning is not for me under any circumstances!  It takes me all my time to get dressed and go downstairs then I fall on the settee exhausted.  I stay there most days until about 3:30pm when I feel quite a bit better.  I would say I'm at my best around 6:00pm -ish.  I could very easily fall asleep at ANY time, day or evening though if I'm just sat watching TV, but can just about keep awake if I'm busy with something - sat down of course, I'm in too much pain to stand for any length of time.  I only do small jobs most days, but there are times when I have to be on the computer for a few hours at a time once or twice a week (I've even nodded off at the computer).  

    Once I get comfy on the settee after the evening meal, or after having been on the computer until late, I just don't want to move, even to go to bed.  Eventually, about 3:00am, I will drag myself off the settee, tidy up a little and go to bed.  I get to sleep quickly and usually sleep until my husband wakes me the following day around mid-day.  My sleep is usually broken because of the back pain and needing to go to the toilet at least once.  My husband, who supports me with this illness, falls asleep most days after we have eaten in the evening.  He will have probably been out shopping, and cooks our meals but only goes to bed when I do.  I only load the dishwasher and get it going.  I'll do some ironing when absolutely necessary.  I pay once a week for a cleaner!

    I do take quite a lot of medication for high blood pressure, cholesterol, IBS, acid stomach, urge incontinance and severe back pain.  I also have the other usual CFS symptoms such as muscle weakness, clumsiness, short term memory problems, excessive sweating episodes, sore throats and uncontrollable movement of legs in bed and sat down.  My pain medication is 10mg morphine tablets with morphine liquid inbetween the two doses of tablets, but I know the tiredness I have is not purely the morphine as I was like this even before I was on this medication.  10mg x 2 + liquid doesn't take the pain away anyway, just eases it slightly.

    i thought it was just me who felt so awful in the 'mornings'!  What a terrible illness.  At least most of my life has been normal, only getting this CFS late in life (age 65 when this thing started, now 72), but I feel so sorry for the young people who have this debilitating illness.  It's so much more frustrating when doctors can't help.

    • david59662
      david59662 KathS

      Posted

      Hi Kath, thanks for that. Yeah i'm 34 and it's tough. Trying to find a way out everyday. God bless, take care, stay in touch.
    • Ludivine
      Ludivine david59662

      Posted

      Hi to David and all of You.

      Here's a real message of hope for all of you.

      I had CFS for 18 months and I am OUT OF IT! Just like that.

      I went through hell for 18 months just like you.

      Seeing countless of specialists, docs, naturopaths etc..doing countless of bloodtests and scans, and eventually got so depressed had to take pills for anxiety and sleep.

      Than  started a new treatment in October and within weeks was back to normal, could walk my dog again, go back to full time teaching , and regain my health and energy.

      How did I do that? Acupuncture!

      It was like a miracle, I could't believe it!

      Besides the acupuncturist cured other people with CFS!

      So all you have to do is find a good TCM  (Traditionnal Chinese Medicine) therapist, that can prescibe plants and do needles.

      No more depression for me , no more swollen glands and sleeping pills, and  just very light symptoms now, as I am still on the road of recovery!

      So here you go!

      If you are as desperate as I was you can give it a try!.

      Wish you all good luck and good health

       

    • david59662
      david59662 Ludivine

      Posted

      Hi Ludivine,

      In the very beginning of my CFS i did 3 months of TCM herbs+acupuncture with a reputed practitioner with ZERO RESULTS, cost me £1500. I'm delighted acupuncture worked for you but it did not work for me.

    • Ludivine
      Ludivine david59662

      Posted

      Thanks  David I am sorry to hear that  it did not work for you.

      I guess I was lucky to get a brilliant  practitionner...

       

    • david59662
      david59662 Ludivine

      Posted

      Yes, did you take any herbal remedies ?

      Can you PM me the practitioner you saw ?

      Thanks

    • jackie00198
      jackie00198 Ludivine

      Posted

      That's great that acupuncture worked for you. I tried it wth a very good practitioner when I was first diagnosed. It did not help me.
    • Ludivine
      Ludivine jackie00198

      Posted

      Hi Jackie for me it was like a God send miracle but I suffered with very debilitating CFS and swollen glands for 18 months, but as I wrote on en earlier post many fibromalgia sufferers patients in France had excellent results of remission with a  dairy, gluten , and low sugar diet for life  with nutrients it gave them back a painless life for the vast majority of them.

      I think it is worth trying.

    • jackie00198
      jackie00198 Ludivine

      Posted

      I'm almost 100% vegan, so I don't eat dairy, and I eat a low sugar diet. I don't entirely avoid gluten. Still no change. When I was seeing my acupuncture person, other patients in her waiting room said acupuncture hugely helped their ME/CFS. So I know that for some people, acupuncture can work. You are very very lucky it worked for you.
    • Ludivine
      Ludivine jackie00198

      Posted

      Hi Jackie

      I was really lucky.

      And all of you need to believe that sooner or later you will  heal and be lucky to when you eventually find the riight treatment.

      This being said I tried a vegan  diet for 6 months with lots of cereals, nuts , seeds, brown flour etc...

      I thought was doing the right thing,  but it actually made things worse and worsened my condition and  my acupuncturist asked me to go back to eat  meat , poultry and fish to maintain the yin yang balance in the body.

      So did the naturopath, the idea being that man is originally a carnivore so meant to eat meat, and that gluten has been  mutating  17 times over  200 000 years while man digetsive system didn't have time to adapt consequently  many people have unknown intolerance to gluten  which in the  long run gives a blow to the immune system.

       

  • Ludivine
    Ludivine david59662

    Posted

    Hi David

    I saw an immunologist and that wasn't of any help,

    But I am also getting a treatment to bost the immune system with the Naturopath in addition to CTM treatment and it does help.

    Basically Vit A,B complex,C,D3,E, Magnesium,Zinc, Calcium and selenium.

    Also stopped all the diaries and it does help.

    As I was diagnosed to have a leaky Gut gut syndrome induced CFS like many other sufferers.

    To my surprised the Naturopath found out I had many food intolerances unknown to me.

     

  • Ludivine
    Ludivine david59662

    Posted

    OMY it seems my post as been removed cry

    so I will reformulate it.rolleyes

    Was answering David,

    Basically my visit to Immunlogist wasn't of much help.

    But the naturopath was very helpful as gave me a full treatment to boost immune system in addition to my accupuncture treatment and right now i feel I have my life back again.

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