Discussions By Condition: Muscle conditions

Possible treatments for Chronic Fatigue?

Posted In: Muscle conditions 19 Replies
  • Posted By: Lee Cox
  • October 2, 2006
  • 05:31 AM

I would really like to hear from anyone who has suffered with Chronic Fatigue Syndrome and has found treatments which have improved the tiredness and aches. I was diagnosed with CFS two years ago, but to this day haven't been able to get any real relief from the tiredness and exhaustion. I was diagnosed with a tumour on the optic nerve of my eye in 2004, for which I was prescribed high doses of steroids for about three months. I then had 6 weeks of successful radiation therapy, but shortly afterwards developed chronic tiredness, aches, weight gain, loss of memory and concentration. I have seen many specialists, each of whom insist the tiredness is not related to the radiation as this should have subsided within 3 months of treatment. All agree it is CFS, but none seem to agree on a treatment. I've been given medication for depression (I'm not depressed), medication for the aches and pains (which doesn't work), sleeping tablets (which I don't need because I'm always tired anyway) and have been told to exercise (which is almost impossible when all I can do is sleep). I notice that the tiredness seems to come and go throughout the day, but one thing that bothers me and I'd really like to know if anyone else has experienced this - is that the tiredness always seems to hit quite suddenly within an hour or two of waking up in the morning and I feel as if I haven't slept for days, even though I've just been asleep for 8 hours. Has anyone else experienced this? The doctors seem baffled by this, saying that fatigue usually gets progressively worse throughout the day. So if anyone has experienced similar side effects or knows of treatments which have worked for them, I'd really like to know......

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  • Hi,I have CFS, I was diagnosed in 1998.I am 26 and have experinced all of the same symptoms etc as you are now.Unfortunatly there is no cure or magic pill, I wish there was. I have tried NADH tablets for energy, you can buy them online and they may work for you!I realsie exercise is difficult but it does help, I did a lifestyle management programme with the ME clinic I went to and it helped me no end. I understand what my base lines are and what I can and cant do.It was a long haul and it was difficult and I got very upset through it but I am now back at work and I go to the gym - wow!!!!!! I love it and I feel like I have made a hugh achievement. i honestly believe that you need to stay positive, easier said than done I know!Please stick with it, CFS is individual to each sufferer and what may work for one dosent always work for another.Are you seeing a CFS specialist?
    Anonymous 42789 Replies
    • October 29, 2006
    • 00:37 PM
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  • It is encouraging to read your reply and see that the lifestyle management programme worked for you. I have seen a CFS specialist, but he didn't give me many options for managing the condition. He seemed quite set on prescribing tablets which have traditonally been used to help with sleep deprivation and depression - neither of which I suffer from. You also mention NADH tablets for energy - I have not heard of these before, can they only be obtained online? Do you remeber how your CFS came on, was there a particular incident/illness that you associate with its onset?
    Lee Cox 2 Replies
    • November 2, 2006
    • 06:04 AM
    • 0
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  • I agree the specialists havent got any real answers as unfortunatly there arnt any - yet!I was put on anti depressants and sleeping tablets but to be honest they made me feel worse and I came off of them. I was not depressed at first it was only once I realised how life changing CFS was that I became depressed.I was also given vitamin B12 injections for a while to, I am not sure whether they actually helped or not. There are sooooo many things that different doctors suggest you try!The NADH was suggested by my specialist, he gave me a number to call to obtain them but it was a few years ago and unfortunatly I do not have it anymore! I have seen a few websites where you can buy these and it might be worth while checking out a health shop to see if they sell them or alterbatively speak to your specialist. Do you mind me asking where you saw your specialist?The life tyle management programme was great, for me, but it is not gospel and some of the things suggested did not help me or fit into my lifestyle but you can tweek things to suit you! As for exercise ave you tried yoga to start you off? It's less demanding and not as physical as the gym etc... A relaxing form of yoga with lots of breathing is probably the best type and make sure you tell the teacher you have CFS. The British Yoga Wheel have numbers of teachers and classes near where you live and they seem to be knowledgable of CFS, one even suggested Alexander technique to me - anoter good type of yoga.It has taken me 8 years to get to where I am now and I have tried everything sometimes it is just a case of time and staying as positive as you can - dont let the CFS rule your life! A good piece of advice I heard was - don't treat the CFS as a separate part of your life, it is a part of you and your life! Once I adopted that and stopped treating it as the enemy and learnt to deal and live with it is when I turned the corner!Be wary of support groups as I have come across many cynical and depressed people and it is easy to then fit in with them and start feel sorry for yourself etc and that can be a downward spiral!Although you need to and want to sleep try to get into a pattern of going to bed at the same time and getting up at the same time, it helps in the long run - oh it is hard and I had many a tantrum at my Mum getting me up in the mornings!!!!!!!A relaxation instead of sleeping in the afternoons is helpful but relaxation does take a while to get used to and can be hard going at first!A good book to get/read is Living With M.E by Doctor Charles Shepherd, it has loads and loads of info and also contacts etc.I myself had Glandular Fever when I was at school and I never got any better and my health declined and I was eventually diagnosed with CFS. Any other questions you might have please ask!Take Care and stay positive!
    Anonymous 42789 Replies
    • November 2, 2006
    • 00:31 PM
    • 0
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  • Thank you for your advice. It is encouraging to talk with someone else who has CFS. It is a condition which I find many people simply don't understand and as you say, even the specialists are still looking for ways to manage it. I was diagnosed in South Australia and unfortunately I don't think we have access to some of the treatments or support groups that may be available in the US or Europe. Certainly, my specialist didn't advise me of any support groups, but as you suggest these should probably be approached with caution anyway. Although I don't suffer with depression, I understand exactly what you mean when you say that you came to feel depressed when you realised how life changing CFS was. I'm only 29 myself and often feel as though there are so many things I should be accomplishing, but just haven't had the energy to manage. It's interesting that you mention Yoga. A year ago I started going to Yoga classes and I noticed a slight improvement after just a few weeks, but I gave it up as I did'n't have enough time with work/study commitments. I think I will try to start going again and see what happens. Just out of curiosity, what is it exactly that you do for relaxation in the afternoons? I usually have to sleep, but I'd like to give anything else a go that might help. Thanks for your advice, take care...
    Lee Cox 2 Replies
    • November 3, 2006
    • 00:44 PM
    • 0
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  • I think the UK have begun to really look at CFS/M.E and there are quite a few good clinics around and I am very lucky that there is a CFS clinic very very close to me, I have met people from all over the UK there!Yes those cynical people should live a day in our lives and see what it is like! I to wish people would stop saying CFS is a form of depression as we know it is not at all and if you do get depression it is as a result of the illness!I was advised against sleeping in the afternoon, easier said than done! However I dont often sleep in the afternoons, I really only do if I am planning on going out for the evening or I am totally shattered!I tried relaxation CD's, guided or just sounds/music etc, I didnt get on with the music ones as I found it to easy to get a busy brain and start thinking about other things. I think far to much and find it very hard to relax and switch off! I used the guided relaxation CD's as they gave me somehting to focus on. I feel asleep half way through all the time at first, it takes a while to get used to. The doctor said relaxation rests your brain and your body and should over time give you some energy - when your asleep your brain is still working! In the long run your body needs the relaxations and it can be scheduled into your daily routine.The lifestyle management I did suggested 3 a day and one before you go to sleep at night to relax you so you should just drift off. However I think you can only fit 3 1/2 hours in a day if your not working! I didnt manage 3 a day but fitted them in around my life.Also I suffer alot worse from Oct to April due to the weather in the UK, perphaps you dont have this problem, ha ha! Anyways I use a SAD light for these months to increase my day light hours as this is apparently also meant to help!I hope this helps some what and I send you all the luck in the world! Anymore questions just ask away...
    Anonymous 42789 Replies
    • November 4, 2006
    • 05:14 PM
    • 0
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  • G'day Lee I began to get extremly tired in Feb. 2000. I won't go into all the detail here, as I have my story on many health sites and forums already. What I'd like to tell you is that I believe lack of oxygen made me tired. Tiredness usually goes with some form of illness or condition, which takes a lot to recover from. I developed neurological symptoms - nothing in many tests could be found to cause the symptoms I was suffering, no doctor believed my symptoms and I wasn't on any medication.Through lots of experimentation, research, trial and error, I discovered what I call MOT - Mini Oxygen Treatment - I found by taking 250mgs Vitamin B1 tablet - 3 or 4 times a dayOR 1000mgs Vitamin C - 3 or 4 times a dayeither of these, increased my temperature (as if walking or other excercise), increased my breathing, increased my blood and oxygen circulation 24/7, without my even having to think about breathing. Many illnesses and conditions are known to lack oxygen in the body - so by taking MOT, extra oxygen is breathed in from the air, without any stress, drugs or machines etc. and I firmly believe now, through my experience and the research I've done, that MOT may even prevent many illnesses from advancing to cause illness and many symptoms later on.Through my experimentation, I found, because of my weight, I had to slowly increase the VB1 to 500mgs per dose and I also rose the VC to 3000mgs. per dose. DON"T take VB1 if on pain relief and always see your doctor before changing any medication.I was more unwell on a dull day or when it was raining, cold, frosty, or at night time - all of these times have a lower oxygen levels than in the day time. Besides the extreme tirdness, I had cramps, tics, involuntary movements, mini seizures and many more symptoms to numerous to mention.Taking VB1 or VC (and a few other things which also raised my temperature etc.) suppressed my symptoms and after 18 months of experimentation, etc, my symptoms started to reverse. I still take MOT, as I still have some slight symptoms. I still get tired sometimes, but not as much or for as long. I also am out doing things 3 days a week, which I didn't do, or probably couldn't do before, when I was ill. I tried to walk a little way each day - even if very tired. Any sort of excercise and also sitting with your back to the sun (even in doors) for about 20 minutes, increased my breathing - but excercise and heat only increase your temperature and breathing for a short time. MOT taken 3 or 4 times a day, increases it 24/7.The other person replying to you, lives in UK and is worse from October to April - the UK Winter. I was worse in the Australian cooler months, May to September.Hope this info helpsainee
    Anonymous 42789 Replies
    • November 4, 2006
    • 11:10 PM
    • 0
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  • Thank you for your reply Ainee. It's always encouraging to hear about different people's stories and the treatments that worked for them. It is very interesting that you mention lack of oxygen as a possible cause of your tiredness, as this has some significance for me and the condition I had radiotherapy for back in 2004. It wasn't something I had though of, but it is something I will talk to my doctor about now. Interestingly, I also have found the CFS to be worse over the cooler months like yourself and will certainly try to see if increased exposure to daylight helps the condition. Getting out in the sun (with sunscreen of course) can only be good for you anyway! You've both certainly given me some good feedback and I will discuss these possible treatments with my doctor. Thanks again...
    Anonymous 42789 Replies
    • November 10, 2006
    • 08:13 AM
    • 0
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  • Some info you might find interesting:www.medscape.com/viewarticle/538308You have to fill ina reg form but it only takes a few sec and this is worth the read.Hope you find it interesting.
    Anonymous 42789 Replies
    • December 8, 2006
    • 03:56 PM
    • 0
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  • Fibro & Cfs are now tied to undx'd Lyme disease..... I was dx'd with fibro 6 yrs ago, but it seems its a 20 yr old case of Lyme...Check it out.
    Anonymous 42789 Replies
    • February 4, 2007
    • 00:19 PM
    • 0
    Flag this Response
  • Could you tell me a bit more about Lyme disease please..Thankyou
    Anonymous 42789 Replies
    • February 12, 2007
    • 02:24 PM
    • 0
    Flag this Response
  • Hi,I am new at this. I have had CFS/Fibro for over 20 years. I have tried many different meds, some helped, others didn't, you know the story. I was led to a call that is on every Tuesday night at 6:30 (CST). The info is great and I found it very beneficial. Since I have been on the products it has helped me. Let me know if you want me to get you on the call. You may also want to take a look at this site: http://cwgreg.toxinchecklist.comI hope this can help
    ccgreg 1 Replies Flag this Response
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  • HI, I was diagnosed with suspected Chronic Fatigue - which is about as close as I can get here in little Perth - Australia. I just wanted to share what has helped me. Weight training - I don't know why (some thing to do with improving the bodies "anaerobic" systems I think).. I have read it recommended so many times for CFS and decided to give it a go. Initially I could only push light weights for 10 mins per day but now I am up to 30 mins per day and my weights are reasonable. Yeh it has made me more solid looking but the other benefits I am experiencing out weigh the vanity. The sense of achievement from being able to go to the gym has been great for me psychologically as I also have suffered from anxiety. (who wouldn't be anxious when you can't seem to manage going out in public without getting dizzy and getting the shakes!) I know it seems impossible if you are barely able to walk but you should try to find a small, cosy gym ( I go to a ladies gym) where you can go at a quiet time of day. Having someone to go with you initially to take care of you may help. The 10 mins per day soon increases, just make sure you increase it slowly by 5 minute increments at a time. You have to be tough and realise you will have bad days and good days. I decided that if I even just made it to the gym and sat on the gym couch for 10 mins and then went home, that was a small step towards my goal. I honestly believe the weights have helped me.Goji Juice - expensive and suspicious but I can't deny how it has helped me. Something about creating an alkaline state in your body. I believe it is cleaning up some of the rubbish in my cells (it is a powerful anti-oxidant) and has helped with my energy and relieving of most of my symptoms. I take high doses - about 150 - 200 mls per day. This costs about $300 (Aust.) per month, which hurts our pocket too but I believe it is worth it. The goji juice has helped me to be able to return to uni for 1 day per week. I drink twice as much juice on this day. I noticed changes after taking Goji for about 1 month - particularly after doubling my dose. Make sure you get a good brand of Goji - more expensive though. Do your research on it. It is often a direct selling product which you can sign up and get your own montly supply at a cheaper rate. Also look on Ebay. Seriously, I believe it is making the difference for me and giving me more energy.I take also Co Enzyme Q10 - only 1 per day and alot of Spirulina as well as other vitamins. I am sure this is all helping. I don't yet have my old self back but the improvemnts are there. Small improvements every day and every now and then I have a bad day but I just accept it and beofre long I am feeling better again. I am not working again yet but just being out of bed, able to exercise, cook and take care of myself are big pluses. I am moving forward - I can tell. Water Water Water - purified!Get a tissue (hair) analysis done - I had one done at a lab and they found alot of metals in my system, mine were off the graph in fact! My husband spoke with a young man at a health food store who had had CFS and he said the hair analysis was a turning point for him. The natropath recommended alot of spirualina to help chelate these metals out of my body - which will take time. She also gave me some minerls etc. She says the results indicate that I would be experiencing fatigue so it made sense. These are the things that have helped me and I have been trying alot of things for about 18 months. I know it all costs money but it is money well spent. I try to show gratitude for all of the small things that I am able to do and take pleasure in just laying there watching a movie. Hopefully will come the day when I am too busy to watch a movie during the day so I best enjoy it now huh! I wish you good health.
    Anonymous 42789 Replies
    • August 15, 2007
    • 07:52 AM
    • 0
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  • You guys are some upbeat people, its nice to know it can be managed.I dont know whats wrong with me, sounds exactly like some of your storys.I posted- (i cant lift my arms).I am waiting for medical insurance Im too broke to go to classes.All I know is turning to alcohol for relief from straining your muscles does NOT work.Now my muscles ache so extremly bad it is not good to be in that frame of mind.ALcohol is BAD!
    Anonymous 42789 Replies
    • September 6, 2007
    • 00:03 AM
    • 0
    Flag this Response
  • G'day Lee I began to get extremly tired in Feb. 2000. I won't go into all the detail here, as I have my story on many health sites and forums already. What I'd like to tell you is that I believe lack of oxygen made me tired. Tiredness usually goes with some form of illness or condition, which takes a lot to recover from. I developed neurological symptoms - nothing in many tests could be found to cause the symptoms I was suffering, no doctor believed my symptoms and I wasn't on any medication.Through lots of experimentation, research, trial and error, I discovered what I call MOT - Mini Oxygen Treatment - I found by taking 250mgs Vitamin B1 tablet - 3 or 4 times a dayOR 1000mgs Vitamin C - 3 or 4 times a dayeither of these, increased my temperature (as if walking or other excercise), increased my breathing, increased my blood and oxygen circulation 24/7, without my even having to think about breathing. Many illnesses and conditions are known to lack oxygen in the body - so by taking MOT, extra oxygen is breathed in from the air, without any stress, drugs or machines etc. and I firmly believe now, through my experience and the research I've done, that MOT may even prevent many illnesses from advancing to cause illness and many symptoms later on.Through my experimentation, I found, because of my weight, I had to slowly increase the VB1 to 500mgs per dose and I also rose the VC to 3000mgs. per dose. DON"T take VB1 if on pain relief and always see your doctor before changing any medication.I was more unwell on a dull day or when it was raining, cold, frosty, or at night time - all of these times have a lower oxygen levels than in the day time. Besides the extreme tirdness, I had cramps, tics, involuntary movements, mini seizures and many more symptoms to numerous to mention.Taking VB1 or VC (and a few other things which also raised my temperature etc.) suppressed my symptoms and after 18 months of experimentation, etc, my symptoms started to reverse. I still take MOT, as I still have some slight symptoms. I still get tired sometimes, but not as much or for as long. I also am out doing things 3 days a week, which I didn't do, or probably couldn't do before, when I was ill. I tried to walk a little way each day - even if very tired. Any sort of excercise and also sitting with your back to the sun (even in doors) for about 20 minutes, increased my breathing - but excercise and heat only increase your temperature and breathing for a short time. MOT taken 3 or 4 times a day, increases it 24/7.The other person replying to you, lives in UK and is worse from October to April - the UK Winter. I was worse in the Australian cooler months, May to September.Hope this info helpsaineeAre you sure you don't also have tourettes?
    Anonymous 42789 Replies
    • October 15, 2007
    • 05:40 AM
    • 0
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  • I haven't been here for ages. It's a wonder I remembered my password. I had symptoms similar to many different neurological illnesses and conditions - including tourettes + spasms, cramps, twitches, tics - which all hurt.The treatment I started to experiment with in 2001, suppressed my symptoms and eventually reversed most of them.If you go to Brain Talk Communities - Success Stories - My Story May Give Hope - by ainee, and many other postings - including many in CJD, you'll get a bigger picture of what ***l I went through - yet even after giving my information - free of charge - since 2001, I don't seem to get a "medical ear" to hear my story, which I believe will give hope to many - regardless of illness, condition, diagnosis or cause.I've started to get a positive result from people who have been diagnosed with CJD - a terminal brain wasting disease in humans - one woman is getting better health - and another woman has just started the treatment.I hope my effort brings better health to those who "look outside the square".ainee.
    Anonymous 42789 Replies
    • November 16, 2007
    • 09:19 AM
    • 0
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  • HiI was diagnosed with CMT a couple years ago and started experiencing fatigue and fastly falling asleep at the computer at work or even driving home,so I talked with my then neurologist who since has retired but he prescribed me Provigil and I noticed immediately the difference in my energy and not wanting to fall asleep in front of computer or I even couldn't concentrate and read a newspaper or book before and now I can,so good luck with your treatment. Denise
    Anonymous 42789 Replies
    • February 26, 2008
    • 03:33 AM
    • 0
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  • I was diagnosed with CFS almost 4 years ago as well as chronic depression with manic episodes. I was put on SSRI antidepressants and I couldn't stay awake as a result. I physically could not get out of bed due to tiredness due to the antidepressants. I was tried on about 4 different types, each giving me horrid side effects and all of them made me feel more groggy and tired than not having them! I agree with ainee on the vitamins, I take a multivitamin and try to remember to take one of the effervescent vitamin c tablets (the ones in the tube like alka-seltzer, they contain 1666% of your RDA, good for a boost!) I've found besides that, that I have to push myself and yes I'm not going to lie it's extremely hard and you just want to crawl back into bed and sleep but it takes your body 28 days to form a habit and it should start getting somewhat easier hopefully. It may just be linked to some other problem of mine but I have found that pushing it helps. I've laid there groggily thinking that I couldn't possibly get up to shower and then I've changed the way I think to say I can. Got up, had the shower, and felt better for it! The great thing about us people is that we have no idea how powerful our minds are so if you manage to get to control any of it at all, let it be your willpower to strive and beat your tiredness!And whatever you do I insist you don't go for things like energy tablets, caffeine and drugs to temporarily keep you awake. If things are getting to the point where you truely don't believe you can carry on you may want to look into provigil. Though I believe it is hard to get hold of, the side effects don't make it worth it and it is more for narcoleptics than us who feel tired.I hope I've helped at least a little bit! Feel free to private message me if you think I can answer any questions! :)
    Tarwenamin 6 Replies Flag this Response
  • I was diagnosed with CFS as a teenager 20 years ago after a terrible bout of childhood pneumonia. It seemed like I never really recovered from the pneumonia. I was 14 then, so I had age on my side. I was always tired, sore, achy all over (kind of like an old person with arthritis or something), and just overall feeling of not being well. I am 34 now and have completely recovered from CFS. It took about 3-4 years to recover. I even joined the Army at age 20 and made it through just fine. My advice would be to learn your limits and push yourself each day to those limits. You are never going to sleep well if all you do is rest during the day, so you have to start some form of exercise. In 1988 when I was diagnosed, my doctor and his colleagues did not know much at all about CFS. But he did know that low impact exercise/light weights would help. I walked on a treadmill for 1 1/2 to 2 miles per day and stayed active with household activities. I left traditional high school and went to night school because some days were impossible (well you know) to function in. I also took BEE ALIVE which is a royal jelly made from the queen bee of a hive. It is about $100 for a three month supply. I think the BEE ALIVE, CO Q10 (otc vitamin), light exercise, learning my limits, and not laying down to this illness helped me get rid of CFS. I cannot stress the importance of prayer, support from your family, faith, and optimism enough either. Just don't lay down to it. Have a life and take the vitamins and try to stay active as much as possible. I know there are not any clear cut answers, but this is what has worked for me. Hope this helps! :)I would really like to hear from anyone who has suffered with Chronic Fatigue Syndrome and has found treatments which have improved the tiredness and aches. I was diagnosed with CFS two years ago, but to this day haven't been able to get any real relief from the tiredness and exhaustion. I was diagnosed with a tumour on the optic nerve of my eye in 2004, for which I was prescribed high doses of steroids for about three months. I then had 6 weeks of successful radiation therapy, but shortly afterwards developed chronic tiredness, aches, weight gain, loss of memory and concentration. I have seen many specialists, each of whom insist the tiredness is not related to the radiation as this should have subsided within 3 months of treatment. All agree it is CFS, but none seem to agree on a treatment. I've been given medication for depression (I'm not depressed), medication for the aches and pains (which doesn't work), sleeping tablets (which I don't need because I'm always tired anyway) and have been told to exercise (which is almost impossible when all I can do is sleep). I notice that the tiredness seems to come and go throughout the day, but one thing that bothers me and I'd really like to know if anyone else has experienced this - is that the tiredness always seems to hit quite suddenly within an hour or two of waking up in the morning and I feel as if I haven't slept for days, even though I've just been asleep for 8 hours. Has anyone else experienced this? The doctors seem baffled by this, saying that fatigue usually gets progressively worse throughout the day. So if anyone has experienced similar side effects or knows of treatments which have worked for them, I'd really like to know......
    Anonymous 42789 Replies
    • August 10, 2008
    • 04:09 PM
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  • [QUOTE=Unre I was diagnosed with Fibromyalgia and Chronic Fatigue syndrom about 8 years ago. I take a drug called....Provigil. I take 200 mg. every day and I can take more if I know that I am going to be out late, etc. It is a very expensive drug, but, has worked wonders for my fatigue. Ask your Dr. about it. God Bless.
    Anonymous 42789 Replies
    • August 18, 2008
    • 06:04 PM
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