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I'm 20 and have just been diagnosed with CFS, need some help finding the best treatment!

Posted , 9 users are following.

georgia66685
georgia66685

I found out earlier this week after countless tests that I have CFS, I was told it might only last 3 years but I've done a bit of reading and am worried that I might have this for life. I have heard about 'pacing' but not really sure what this means, also not really sure what professional help I should seek out. I'm glad that I have an answer for my never ending tiredness, no energy and constant flu symptoms but I'm already experiencing people saying 'oh you're just tired get over it' and the lack of understanding is getting to me. Any help would be greatly appreciated!

2 likes, 42 replies

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  • hope4cure
    hope4cure georgia66685

    Posted

    Ask for meds and supplements to help u. Have u had a blood test to show any defencies. Minerals, vitamins  or heavy metal in ur blood system?

    vit-D  and eating good foods,no sugars lots of veggies and try to stay away from foods involved with celiac disease. Some times it could be dairy.its so individual.

    yogurt and OTC meds help me .therapy and exercise...sleep is very important and rest during the day. And occasional RX when needed. I take a lot of yogurt that contains active good bacteria to help balanc the good bacteria in the gut. Many studies show it has helped. CFS

    these r the things that helped me everyone is different. Mabe something HERE will ring a bell with & help u.

     

    • georgia66685
      georgia66685 hope4cure

      Posted

      I had some blood tests done a couple of weeks ago, everything was normal with b12 borderline, got some further testing done on that and it came back normal. Thank you I will start with my diet and see if it helps do you recommend getting tested for celiac etc or does it just make you feel better when you don't eat it?
    • hope4cure
      hope4cure georgia66685

      Posted

      Yes for me to stay away from certain foods known to cause issues I have been so much better.

      I stay away from pre packaged & pre Made foods . Only fresh foods and no additives. Eating this way has helped me tremendously and take daily vitamines , D, and fish oil.

       

    • georgia66685
      georgia66685 hope4cure

      Posted

      Thank you very much for your help I will try this. Do you have any recommendations for research or strategines I should undertake ie pacing etc?
    • hope4cure
      hope4cure georgia66685

      Posted

      What works for me is to take OTC meds in  AM , fix a protien shake and cup of coffee. Rest do fun things. Yhen in the afternoon eat a lite salad and fruit befor exercise which pumps out natural adrenel in in our bodies for energy. 

      Then rest and another lite snack with OTC MEDS.. Then a 40 minute rest. Stay active form a routine that fits in UR schedule and appropiate for u.

      FInd what works for you. Hobbies and relaxing thing playing music is or listening to music. OR palates for CRS . Taking aAdog for a short walk working UR endurance up.

      pacing and knowing UR limitations is the biggest element in this whole picture. I5 years ago it took me one day to do the same things that take me a week now. At least I'm still movin! It adjusting to UR own understanding of what u can do without breakinpking the bank... So to speak.

      i also find easier ways to do things...to preserve energy. I do the same things but in a differently ways.  Some things I just DONOT do and ask a friend or someone to help. Or leave it until I can get help.

       Drink lots and lots of water all day. Sometimes fatigue, headaches and leg cramps are from dehydration as many with CFS dehydrate easily.

    • hope4cure
      hope4cure georgia66685

      Posted

      What works for me is to take OTC meds in  AM , fix a protien shake and cup of coffee. Rest do fun things. Yhen in the afternoon eat a lite salad and fruit befor exercise which pumps out natural adrenel in in our bodies for energy. 

      Then rest and another lite snack with OTC MEDS.. Then a 40 minute rest. Stay active form a routine that fits in UR schedule and appropiate for u.

      FInd what works for you. Hobbies and relaxing thing playing music is or listening to music. OR palates for CRS . Taking aAdog for a short walk working UR endurance up.

      pacing and knowing UR limitations is the biggest element in this whole picture. I5 years ago it took me one day to do the same things that take me a week now. At least I'm still movin! It adjusting to UR own understanding of what u can do without breakinpking the bank... So to speak.

      i also find easier ways to do things...to preserve energy. I do the same things but in a differently ways.  Some things I just DONOT do and ask a friend or someone to help. Or leave it until I can get help.

       Drink lots and lots of water all day. Sometimes fatigue, headaches and leg cramps are from dehydration as many with CFS dehydrate easily.

    • georgia66685
      georgia66685 hope4cure

      Posted

      Thank you this is very helpful! I think at the moment I'm in the process of trying to find a management plan, it's been great to see what you do and it's helped me alot!
  • jackie00198
    jackie00198 georgia66685

    Posted

    Georgia:

    So sorry you’re having to deal with ME/CFS. I know it’s disheartening when people tell you you’re just tired. I had a doctor tell me this when I was first diagnosed. It has nothing to do with you and everything to do with people’s ignorance. One very good thing is that it sounds like you got diagnosed pretty quickly. People can go for years without getting properly diagnosed.

    So what to do? First, pacing means that you take it easy and don’t overdo it. You only have so much energy, so pace yourself throughout the day so you don’t overexert yourself. This can result in a crash, with worsening symptoms. If you have days when you feel better, be especially careful about getting enough rest. Pushing yourself to do more can have very bad results.

    I know it can be scary to get this diagnosis, and it’s natural to worry about “what if I have this for the rest of my life.” But try not to go there. Maintaining a positive frame of mnd is really important, and can help lower stress. Stress always makes my symptoms worse.

    As for diet, when I first got CFS, I ate a high protein diet, which helped me immeasurably. Eat lots of veggies and fruit, and avoid sugar and caffeine. In other words, eat a healthy diet. Get a good night’s sleep if you can, and get plenty of rest. Do whatever it takes to de-stress, whether it be listening to music, meditating, yoga (if you’re able). You want to optimize your body’s chance to heal. People can recover from ME/CFS, even without doing anything. I know several people who’ve had it and now lead normal lives. That information about the 3 years is bogus, in that some people can even recover in 1 year, or 2 years. Everyone is different.

    I’ve found that an infectious disease specialist with a good knowledge of ME/CFS can be an invaluable ally in dealing with this. If, by any chance, you live in the U.S., I can give you some names. You probably live in the U.K., like most people on this forum. Remember, you’re not alone. It’s estimated that as many as 17 million people have ME/CFS worldwide. This figure comes from Dr. Jose Montoya, who’s a very well-respected doctor at Stanford University. 

    • georgia66685
      georgia66685 jackie00198

      Posted

      Hi Jackie, I found this so very helpful thankyou so much! It's so good to hear from someone who seems to be in the same boat as me! I actually live in Australia so unless your specialist does Skype calls I think I might have to find someone closer to home. I was thinking about seeing a naturopath, do you think this is a good idea? I work in hospitality (casual job) and do about 20 hours a weekend at the moment, unis finished at the moment so that's all that's on my schedule and I do find I am exhausted during the week as a result, I'm not sure how pacing will work for me during the weekend, do you think by pacing during the week it will help for the weekend or would it just ruin it?
    • georgia66685
      georgia66685

      Posted

      You have reassured me so much and thankyou so much for your advice! I will try and find a specialist in Brisbane that can help me I'm sure they are around but thankyou so much for your support I feel a lot calmer about the whole thing! I will start by changing my diet, do you remove bread and such from your diet as well? I have heard sticking to a gluten free diet helps but being a lover of bread and the such I'm hoping to find a way around this haha - thankyou again!
    • georgia66685
      georgia66685 jackie00198

      Posted

      You have reassured me so much and thankyou so much for your advice! I will try and find a specialist in Brisbane that can help me I'm sure they are around but thankyou so much for your support I feel a lot calmer about the whole thing! I will start by changing my diet, do you remove bread and such from your diet as well? I have heard sticking to a gluten free diet helps but being a lover of bread and the such I'm hoping to find a way around this haha - thankyou again!
    • jackie00198
      jackie00198 georgia66685

      Posted

      Regarding seeing a naturopath--you have to follow a treatment that "resonates" with you. If you decide on an alternative type of treatment like naturopathy, just be sure you check out the person carefully. Of course you should do this for a "regular" doctor as well. There's a huge amount of misinformation and a lot of charlatans out there, wanting to profit from our misery. I did see a very knowledgeable nutritionist when I first got CFS. Now, as I mentioned, I see an infectious disease specialist who only treats ME/CFS patients. I like him a lot. As for pacing, if you're exhausted during the week from your weekend job, that's your body telling you to rest more. If there's any way to not work right now, that would probably be best. Don't try to push through exhaustion. It can make you a lot worse and impede your recovery.  
    • jackie00198
      jackie00198 georgia66685

      Posted

      Regarding your diet--bread is not your friend. This, from a bread lover. I've strugged with giving up bread myself. Avoid white flour, sugar, caffeine, and processed food. Gluten is a whole other matter. Gluten-free diets have became very popular, but I've read that only a very small percentage of the population is really gluten intolerant. But even if you don't have a problem with gluten, bread is not a good thing.
    • georgia66685
      georgia66685 jackie00198

      Posted

      Thanks for the clarification, I haven't heard of an infectious disease specialist but I'm sure there has to be one somewhere close by! I will definately look into it!
    • georgia66685
      georgia66685 jackie00198

      Posted

      Damn, okay I will try to give it up. As well as bread, sugar and processed foods (I don't drink coffee so that won't be a problem) is there anything else you recommend getting rid of)
    • jackie00198
      jackie00198 georgia66685

      Posted

      It's kinda hard to think of what not to eat. Easier to think of what to eat: veggies,fruit, whole grains. 
    • jackie00198
      jackie00198 georgia66685

      Posted

      By the way, you want an infectious disease specialist who's knowledgeable about ME/CFS. You could do a Google search for your area. Then do a Yelp search on the doctors listed. That's how I found my doctor.
    • georgia66685
      georgia66685 jackie00198

      Posted

      Thank you I will try both of those! What type of management plan suits you best?
    • georgia66685
      georgia66685 jackie00198

      Posted

      I have read that people prefer to stick to a daily plan in regards to their daily activities, eat this, rest, drink this, sleep etc do you have one of those as well?
    • jackie00198
      jackie00198 georgia66685

      Posted

      I don't have a daily plan per se, although I do move through my days in a fairly similar way. I find that having a certain structure to my days helps me to normalize my life. I try to get up and go to bed at the same time every day, to maximize chances of a regular sleep pattern. But I don't really sit down beforehand and plan what I'm going to do each day. Or what I'm going to eat. 
    • david59662
      david59662 georgia66685

      Posted

      Weird thing for me Georgia, i was studying naturopathy many years prior to my CFS, i hadn't ate any bread, gluten, processed sugar, gmo's, stimulants for many years, i still avoid these things but doing this i have not felt it has helped my health, no detectable benefits for me. I came into my CFS the fittest and healthiest i had been in my entire life, taking the superfoods, juicing etc Now i am left in much confusion. I plan on starting juicing in the new year, because i know from past experience i got tons of energy from it. I've since learned by seeing a local chinese doctor that raw foods/juices are largely to be avoided, so this has put me off. I think he has a point, it takes more energy from your body to digest the raw versus lightly cooked. However like i say i did feel amazing when i was juicing so decison time. Not much i have tried in 12 months has worked, i still wake up wach morning feeling like my heart is that of a 120 year old.
    • david59662
      david59662 jackie00198

      Posted

      Hey Jackie, what does the I.D doc say about CFS, causes, what is going on in the body etc ?
    • jackie00198
      jackie00198 david59662

      Posted

      My doctor, Dr. John Chia, strongly feels ME/CFS is caused by an enterovirus. (By the way, Dr. Chia is a Chinese-American.) In my case, he feels I have a subcategory of enteroviruses, a Coxsackie virus. He said he sees this in a lot of his patients. He is in close touch with the CDC (Centers for Disease Control), a major U.S. research entity. He spent 1 1/2 hours with me, explaining a lot of stuff that my husband recorded, but I have a hard time remembering. He is furious with the medical community for telling people it's all in our heads. He's see firsthand what this disease can do, as his son had it for about 8 years. I'm so relieved to have finally found a health professional who's strongly grounded in science, is knowledgeable, and compassionate. Over the years, I've see so many profiteers trying to make a quick buck from ME/CFS patients.It's really disgusting.
    • david59662
      david59662 jackie00198

      Posted

      I tested negative for cocksackie and enterovirues and others. Do not think this is why i have CFS, i think potentially a virus starts the process but my own opinion is the resources required by the body to deal with it become depleted, some people are more suceptible than others due to genetic facotrs and or lifestyle factors as well. It's interesting to me with the abola outbreak how some people's immune systems can fight it off whlst others do not. I believe it possible the TCM theory of kidney jing/life essence interesting in this respect, some people are naturally born with lots of it, some people are not, some people can burn it out before their time. So when jing is low we are more prone to illness. You could say most diseases are related to low jing. Just theories but it makes sense to me in relation to my own CFS, how and why it happened and why it persists.
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