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How can I manage Chronic Fatigue Syndrome?

Posted , 10 users are following.

emily84208
emily84208

Last year i caught a really bad strain of glandular fever, i needed 6 weeks of bed rest to resume to semi normal. When i came back to work, i wasn't exactly eased back into my duties and from this I believe I contracted chronic fatigue syndrome.

I've found it really hard to get a diagnosis for cfs, as I am only 20 years old and doctors seem to brush me aside due to my age. I know I have chronic fatigue, because all my symptoms align. 2 weeks ago I had a blood test and everything came back normal aside from my iron being a little low. My doctor seemed to think that was the reason for me being so tired. I'm so sick of being pushed aside because of my age, I'm really struggling to deal with everything at the moment because of the lack of energy I constantly feel.

I work 6-2:30 everyday and as soon as i come home I go to sleep. I'm withdrawing from my social life because my body cannot seem to recooperate fast enough and days later I feel so unwell. Everyday I feel so lifeless, I'm constantly battling aches and pains, I feel like I'm on the edge of passing out and I'm always dizzy. My normal amount of sleep I get is around 16 hours, and even then I feel like I'm running off a 30 minute nap.

How can I manage cfs? I cannot keep living in such a tired state. I play soccer every sunday morning and I feel so useless because I can barely run or kick the ball the way I used to, and as soon as I come home I need a minimum 7 hour sleep.

How long does cfs last for? Are there any type of treatments for the constant tiredness I'm facing? I seriously cannot keep feeling like this at 20 years of age. I sleep so much, I barely feel like I know my boyfriend anymore, intimacy has completely disappeared because I'm far too tired to do anything but sleep, and I hate it.  It frustrates me that my doctor thinks all of this is from my iron being a little bit low.

Any comments or feedback would be greatly appreciated.

Kind regards, Emily.

0 likes, 6 replies

6 Replies

  • jackie00198
    jackie00198 emily84208

    Posted

    I’ve been on this forum for several months, and I can’t tell you how often I’ve seen your exact story. It’s very sad. Doctors are woefully ignorant about ME/CFS, and they’re also arrogant and often don’t listen. When I first became ill, my doctor told me I just needed a vacation. So I saw a second doctor. She told me a lot of people (meaning her) didn’t believe ME/CFS was a real illness. I knew both doctors were wrong, and I knew I was seriously ill. So I went to a specialist at UCLA, and was diagnosed within 20 minutes. You need to see a doctor who will take you seriously, preferably an ME/CFS specialist. An infectious disease doctor would be good. From the symptoms you describe, and the fact that your bloodwork was normal, it sounds like you may very well have this illness. There is no way to predict how long this disease will last. Everyone is different, and there’s no treatment. The fact that you are so young, though, is in your favor. There are things you can do to maximize your chances for recovery. The first is you must pace yourself and dial your activity level way down. I didn’t do this, and have become more and more ill. I would cut out the soccer for now. Also, even the amount of work you do might be too much for your current situation. I know there are financial considerations, but you don’t want to make yourself even sicker. Avoid caffeine and sugar and eat a healthy diet. Learn to relax in whatever way you can. Stress is very bad for ME/CFS. Please let us know how you’re doing. You’re not alone.
  • artistmike
    artistmike emily84208

    Posted

    Glandular Fever is one of the classic routes into ME/CFS and if that happened last year it's time that you were seen by a specialist at an ME/CFS clincic to get a proper diagnosis. You will find out that there are GPs and GPs when it comes to this condition, some are very supportive and others dismissive and damaging to your health, it's important that if you aren't getting the help you need, you change your doctor until you are and get the referral you need.

    Emily's advice is spot on, you need NOW to cut back a lot on your activities to get yourself to a level that you can cope with life better. Your future health depends on this so it's imperative, not an option.

    Read some of the threads on this site and you'll find many people in exactly the same situation as you, some of whom have had it a very long time indeed, so whatever you can do to maximise your chances of recovery now, is very, very important.

    ME/CFS changes your life, it's as simple as that but as you're young, your prognosis is better than someone older, so give yourself a chance now while you have the opportunity.

  • mary_24931
    mary_24931 emily84208

    Posted

    So sorry to hear of your situation Emily but do heed the advice you've received here as people know what they are talking about. I've heard that with good management at the outset of CFS/ME, it can definitely help long term and age is on your side. See if you can find a specialist to help you and I agree that you should cut back on your physical activities at the moment, especially as you are working long hours. Do only what is absolutely necessary each day. I've read many posts from young people who say they have made good recoveries. I'm 58 and burned myself out years ago because I didn't listen to my body. No one talked of ME/CFS in my younger days but it's more understood now and the more it's talked about, the more understood it will become! Good luck x
  • wknight
    wknight emily84208

    Posted

    Having suffered with the condition for many years, I personally would be praying I didn't have CFS and that my condition was caused by low iron. Why? because with CFS there is no cure and for me its been a huge long road to get on the path to recovery. I don't think I will ever return to my former self but I can am leading a normal life at the moment and I only got there through very serious pacing.

    First you need to get the iron sorted out. You can't get a confirmation of CFS with that hanging over you. If you do have CFS unfortunately there is no magic drug to make you feel better. Some attend group sessions, I didn't, I just got on with pacing.

    What that means for me is learning how much you can do and control when you do it, which is difficult when you are working. I use a Fitbit to make sure I get enough sleep, that means 8hrs before I go to work. When I came home I would lie down for at least 30mins before doing anything. Don't do any strenuous exercise, especially football until you have an activity level that you can cope with. I often go around still feeling a bit tired but at least I can do things. Only do very small amounts of exercise and then slowly increase it. Sounds like you are like me and many others doing the boom and bust, start trying to pace yourself with 30 min rest periods and see if that helps.

  • bronwyn97278
    bronwyn97278 emily84208

    Posted

    Hi Emily; the only advice that I can add,  is to read/research CFS with special notice to a study/paper by Dr Lowe....a lady who contributes to this forum has put me onto this, and it tells re the research into our thyroids, especially our T3 and T4 uptake, also bloods to check your Vitamin D and B12 levels....(she has started on a low dose of Thyroxin, and feels she has gained approximately 60% of her energy level back)......I have been successful with my Rhuematologist/GP, in that they believe in CFS and Fibro....and we did the bloods, which have  come back "as border-line" and GP has given me a script for Thyroxin, which I am only now starting...and am soooo keen, as yes, the Lack of energy is suffocating.....I too know that after having "what appeared like Glandular Fever", was my Complete undoing, after many other issues, so do believe that this has been a contributing factor for you.....do the research on the info on "The Thyroid", and try another GP/Rhuematologist, and seriously think re trialing the Thyroxin suggestions....along with All other advice that you get from this forum............remember we are all here for each other....Bron
  • dentalcfs
    dentalcfs emily84208

    Posted

    If you want some "management" then B12 vitamins helps with the sleep and relaxation.

    For energy and metabolism, I couldn't find anything better than virgin coconut oil.

    Viral-induced CFS isn't the one that I really understood though. But there are recovery stories with antiviral medications and pacing.

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