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!
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.
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?
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.
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?
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.
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.
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.
Hi Georgia,
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.
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?
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!
Thank you! I will try to find a specialist in Brisbane and will ask them about that trial. It was good to hear your experience, it's really helpful!
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!
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!
Hi Georgia, have you had a antinuclear antibody test. It's to look for auto immune conditions. My GP has only recently said it looks as though mine has been delayed, or they don't have the results.
I'm not sure if I have, is that done by a GP? I have done a series or blood tests and they tested a lot, I'm not sure if they covered that as well, can you explain it more to me?
What are antinuclear antibodies?
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.
I think I might have been tested for that, I remember listening to my doctor rattle off about 12 different series of results and I think this was one of them, can you explain how it relates to me, does this help with my treatment?
Not really, if you are negative, i guess it's a good thing. Although having the CFS diagnosis is as frustrating as the illness itself, you know everyday you are ill yet all the tests show nothing abnormal. We clearly have lots to learn about the human body.
Yes, I totally agree! Although I'm glad I have answers I seem to have so many more questions!