I'm 20 and have just been diagnosed with CFS, need some help finding the best treatment!
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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!
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david59662 georgia66685
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As far as mainstream medicine is concerned there is no treatment for CFS other than anti-depressants and pain killers (which i refuse), graded exercise therapy and cognitive behavioural therapy both of which i have agreed to do BUT the NHS cannot provide me with CBT for some reason, which is shameful.
I think at present our biggest hope for some quick relief of this debilitating and life changing condition is THE SYNERGY TRIAL currently underway in the U.S. My GP in the UK has already told me if the results are positive he will have no hesitation to help me do it, basically they are using low dose ritalin and a multi-nutrient blend, you can look it up on youtube etc
I've been trying lots of herbs and supplements the past yearwith little success. I believe in my case and many others traditional chinese medicine offers the best explaantion fo what causes CFS and how to fix it, that through various lifestyle factors, mainly repeated stress, i have depleted my life force or jing as they call it, this is a kidney deficiency but also effects all organs sytems. You can build the energy back but depending on the depth of depletion it can take at least 1 year and that's taking particular tonic herbs everyday, which i plan on doing.
I get used to the lack of understanding and the belief this is all in my head despite being a semi professional athlete for many years, i want nothing more than to get back doing what i love but t hrough CFS most of the things i have loved have been taklen from me. I will never give up trying to beat this condition and feel eventually i will win.
georgia66685 david59662
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david59662 georgia66685
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georgia66685 david59662
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david59662 georgia66685
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We normally have antibodies in our blood that repel invaders in our bodies, such as virus and bacteria microbes. Antinuclear antibodies (ANAs) are unusual antibodies, detectable in the blood, that have the capability of binding to certain structures within the nucleus of the cells. The nucleus is the innermost core within the body's cells and contains the DNA, the primary genetic material. ANAs are found in patients whose immune system may be predisposed to cause inflammation against their own body tissues. Antibodies that are directed against one's own tissues are referred to as auto-antibodies. The propensity for the immune system to work against its own body is referred to as autoimmunity. ANAs indicate the possible presence of autoimmunity and provide, therefore, an indication for doctors to consider the possibility of autoimmune illness.
How is the ANA test designed? What is it for?
The ANA test was designed by Dr. George Friou in 1957. The ANA test is performed using a blood sample. The antibodies in the serum of the blood are exposed in the laboratory to cells. It is then determined whether or not antibodies are present that react to various parts of the nucleus of cells. Thus, the term anti-"nuclear" antibody. Fluorescence techniques are frequently used to actually detect the antibodies in the cells, thus ANA testing is sometimes referred to as fluorescent antinuclear antibody test (FANA). The ANA test is a sensitive screening test used to detect autoimmune diseases.
What are autoimmune diseases?
Autoimmune diseases are conditions in which there is a disorder of the immune system characterized by the abnormal production of antibodies (auto-antibodies) directed against the tissues of the body. Autoimmune diseases typically feature inflammation of various tissues of the body. ANAs are found in patients with a number of different autoimmune diseases, such as systemic lupus erythematosus, Sjogren's syndrome, rheumatoid arthritis, polymyositis, scleroderma, Hashimoto's thyroiditis, juvenile diabetes mellitus, Addison disease, vitiligo, pernicious anemia, glomerulonephritis, and pulmonary fibrosis. ANAs can also be found in patients with conditions that are not considered classic autoimmune diseases, such as chronic infections and cancer.
georgia66685 david59662
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david59662 georgia66685
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georgia66685 david59662
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Fidd georgia66685
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david59662 Fidd
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JulieBadger georgia66685
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One of the strongest thoughts of how to get rid of it, should that be possible is to take plenty of rest - don't over do it. Many think there might be a connection to what you eat, what vitamins you take, what medicines you take? Personally I wouldn't know about the eat, vitamins or medicines. I do know that if I try to rest then I don't feel so rotten. As I said to my Occupational Thearopist I end every day feeling yuck, there are different levels of yuck though
In terms of pacing my Occupational Theropist is trying to persuade me to take a 5min break every hour or 10mins every 2hrs and then a further 40mins break during the day. The 40mins break I can read, the 5 or 10mins breaks I need to relax listening to meditation music that sort of thing.
Basically if there theory is correct you have a higher chance of getting rid of it because you are younger. In order to get rid of it you are going to have to rest. Not have the social life of an average 20 years old and cut back on the working as much as possible. It's a big decision for you, you are going to have to let go of doing the average 20yr old expectations.
If I had my chance again I would of done what I am suggesting to you. To not have ME/CFS now would be fantastic. I am 36yrs old. I wear a magnetic back support most of the day. Have experienced pain at some point every single day since I was 14. Now can't walk to the end of the street even on a good day. I have a mobility scooter. I go to bed every night at the same time as my kids (7pm) every night. I get tired even talking let alone socializing. To take a shower it takes me about 2hrs. Rest before, site in the shower, rest after (given up on using a hairdryer).
I'm only telling you this to hopefully help motivate you through the changes you need to make to try to recover. It's it's not going to be fun. It's going to be lonely and you will probably get depressed ( a lovely symptom of ME/CFS ). In terms of the depression I personally would urge you to take the level of anti-depressants you may need to get it under control. I spent a lot of years with my moods swinging around too much. During the night times when unable to sleep I would flight suicidal thoughts frequently. If you get to that place in your mind get help. The anti depressant have helped my alot with that. They have stablized me and could you too if you get like that. If you do get help. Good Luck xxx
georgia66685 JulieBadger
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jess2525 georgia66685
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I'm trying to get out of bed between 9 and 10. Trying to keep a good sleeping routine is important.I know its hard to do at times. Try not to sleep in the day.open the curtains and blinds, let your body get the melatonin for sleep. Don't nap too late in the day or try 20 minute naps if you have to cos if you wake up from deep sleep you feel worse.
Ive just set reminders on my phone so I remember to eat ect.so hopefully that will help. my sense of time is caput. I try and have a healthy diet and remember to drink with every meal.no caffeine, sugar I don't add salt to food. I sometimes have green tea. Eat fruit, salads, vegetables, fish, meat and eggs. I haven't quite got there yet but that's where I'm aiming. I'm gonna try the gluten free diet, i still have to learn about that though.you can get gluten free bread and pasta but its expensive. Some mention about not eating dairy but I'm not so sure. I nearly forgot I have a b-100 tablet with lots of vitamins. I try and have breakfast about 10-11.
Then dinner about 2-3. OH we've been doing juicing aswell. Its a new thing for me but its meant to be really good.makes your body not have to work so hard on the digestion. Caffeine affects the uptake of iron and vitamin c helps the uptake so I remember that.
Tea about 6-7. My occupational therapist said not to eat a big meal too late or it affects your sleep. She said not after 8. So I try to remember not to have the other meals too late otherwise tea is late.
About 8 I don't use my mobile/tv. They say it stimulates the brain and the light from them makes your brain think its day.thats relaxation time. Time to wind down. Not thinking too deep.turn the lights low, read or have a bath.theres other ways to relax but I'm still learning.
I plan to go to bed/sleep about half 10. I'm currently trying to beat insomnia. I have these rescue remedy night drops I take half n hour before bed.they help abit but they're not amazing. Think I will try something else herbal. I don't like tablets.
Ive really rambled..but at the same time maybe some things might help.if not now maybe later. I'm abit worried how your still at uni. Just be careful incase it makes you worse. Mental work still tires your brain out just like physical activity does.
georgia66685 jess2525
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jess2525 georgia66685
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jess2525 georgia66685
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It might not mean much right now but your home life is important too, the people that look after you. Important that they have help and support too. If they're stressed out and down then you can feel guilty like its your fault. But staying positive and trying not to get down or stressed, thats important cos it makes you worse.