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CFS/ME Sufferers. Let's talk about what has HELPED you!

Posted , 16 users are following.

Sassylass
Sassylass

I think those of us who have Chronic Fatigue Syndrome can agree that we need extra rest, a good diet, persistence with recalcitrant doctors, and to maintain as positive an attitude as we can.

Right? That said, please, can anyone provide any tips, remedies, activities, Anything, that you have found that work to increase your energy level? Anyone?

3 likes, 51 replies

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  • katrinablank
    katrinablank Sassylass

    Posted

    far less headaches with vitamin D (D3 supplements) = optimal level is 60 to 80 (see vitamin D council's website for recommendations)

    far less breathing issues & heart palpations with iron supplements = keep Ferritin level above 50 (test for it if you haven't yet), even if/when HGB tests in normal range, your Ferritin level is important

     

    • JulieBadger
      JulieBadger katrinablank

      Posted

      That sounds interesting! I've just last week had my Vitamin D results back and I scored 18 (minimum should be 50 apparently). So they are giving me a 10 week mega boost and then I will need to stay on a higher than normal continous weekly suppliment.  My doctor thinks getting my Vit D level up might reduce my pain levels.  Hearing that my headaches might reduce too is brilliant news!

      I'll pop my Gp a note regarding the Ferritin level checking as I have a lot of problems with heart palpations with the Cardiac unit don't want to look into. Thanks for the advice x

  • end
    end Sassylass

    Posted

    I would say acceptance, listen to your body (ie don't keep fighting it as doesn't help, worsens). Definately a healthy diet and support, understanding group of family/friends.

    Also, don't lock yourself away from society (easily done, danger of depression).

    x

    • JulieBadger
      JulieBadger end

      Posted

      For me I accept pushing myself sometimes in order to still get out and about with people.  I can't do the amount with would be nice but it's nice to get out there a bit. x
    • Sassylass
      Sassylass end

      Posted

      2Inot,

      Absolutely true. Thanks!

  • georgeGG
    georgeGG Sassylass

    Posted

    A healthy environment.

    - house not full of any  contaminent - test everything you can think of that  is used in the house  (yes this is difficult, it may be crucial) includes favourite cosmetics, cleaners etc woodworm, rot treatment for house.

    - locality , are you down wind of chemical factory (disvoered this whe I went on holiday to Algarve where there is unusually clean air)

    - contaminants at work.

    - test all food and drink for reaction

    • Sassylass
      Sassylass georgeGG

      Posted

      George,

      Really good advice and to be honest probably overlooked by most. So, allergy testing by Dr. or GP as you in the UK say, for foods and molds etc, but are there test kits or something for substances in the home? I've been thinking of having my tap water tested and am drinking bottles water only. How do you test cosmetics, cleaning products? Thank you very much for this response, I know it is something I thought about and failed to pursue, myself. If you have time to tell more about how to get this testing done it would be great.

    • georgeGG
      georgeGG Sassylass

      Posted

      We, my wife was an essential help as I had terrible brain fog at the early stage of testing, exclude everything you possibly can. Bring them in one by one. The 'bad' ones cause a sharp reaction. Exclude. When you have settled down again whether in hours or days bring in one more thing.

      It takes ages. No doctor would do it for you. If you really want to get better .,. .that is what it took. Years later I could add the bad things in again, nearly all without trouble. I still have poor stamina and must pace myself. Penalty for error now two to three days fatigue and feeling poorly. A big improvement from weeks and very poorly.

      You will be surprised just how sensitive you can be. Listen to your body. It may seem bizar, but it tells you the truth.

    • Sassylass
      Sassylass georgeGG

      Posted

      Thanks georgeGG,

      Just to clarify, when you say a sharp reaction, do you mean increased fatigue, headaches,body aches, fogginess, or itching, sneezing, rashes, cold or allergic type. symptoms, or what ? By the way, I admire your tenacity in figuring your problem out.

  • jinny23
    jinny23 Sassylass

    Posted

    Hi

    I agree with Pam! I call it PMA! smile

    When the pain and tiredness looms, give in to it.

    The sooner you do, the sooner you get back to your 9/10 feeling.

    In the early days,....find the time to record things...not easy I understand but it so helps, especially if like me, you forget things easily.

    You can then reflect in a positive way.

    if you know something works, persevere with it!

    My physio exercises are so simple to do yet every day I forget them so now I use stickers in my diary whenever I do them. Haven't decided what rewards those stickers should be.

    Any ideas on rewards would be gratefully accepted ???? 😍💝🎈

    Jinny x

    • Sassylass
      Sassylass jinny23

      Posted

      Plant yourself some flowers if you have the space, or buy some fresh for the house of not!💐
    • Sassylass
      Sassylass jinny23

      Posted

      jinny23,

      Forgive my ignorance, I'm not sure of some terms. When you say physio exercises does it mean exercises prescribed for you by a physical therapist or is it a general term? Again, I'm in the USA and must apologize for the confusion sometimes.

      And for totally forgetting about the time difference!

    • Ravenwood
      Ravenwood JulieBadger

      Posted

      Chocolate is definately necessary.  Great mood elevator. Waist line elevator, too, but that's okay if I feel better.
    • Ravenwood
      Ravenwood jinny23

      Posted

      I agree, too.  When the pain and tiredness looms, give in.  It is probably the most difficult thing we have to do.  Especially when one goes from a very active life to a sedentary existance.  But, if giving in is not done, the repercussions are horrible.
    • jinny23
      jinny23 Sassylass

      Posted

      Hi Sassylass

      I love my flowers! Today, I picked some chives with their light, lilac shade on the flowers' head and popped them on the windowsill.

      I visit a Physiotherapist to assist with leg pain.

      Apparently my lower back is stiff which causes nerve immobility and so leg pain. For weeks I have struggled to walk more then 50 metres. After much thinking and questioning, wondered whether it was due to a mechanical issue, skeletal ??

      The physio agreed with me, checked me over and concluded that my lumbar region was stiff.

      He has given me 5 simple exercises to do five times a day !! 😡

      ...well, I am trying...

      regards

      Jinny

    • Sassylass
      Sassylass jinny23

      Posted

      🍀jinny,

      Just keep saying "I'll feel better if I do this, I'll feel better if I do this" and before you know it you'll be done with your exercises.! 🍀

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