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Which advice would you give to someone who has just been diagnosed with Chronic Fatigue Syndrome / M.E.?
See some advice from people with experience in Chronic Fatigue Syndrome / M.E. to people who have just been diagnosed with Chronic Fatigue Syndrome / M.E.
Pace, Pace and Pace some more
Posted Dec 20, 2019 by ME International
Try to stay positive and think about what you can do, instead of what you can't.
Listen to your body and don't push it, but don't give up either. Your body is not the same as it was, so you just have to learn what works and what doesn't.
Find other people with the condition.
Remember some people get better, and most people have episodes of better health. Keep up-to-date with research.
Listen to your body and don't push it, but don't give up either. Your body is not the same as it was, so you just have to learn what works and what doesn't.
Find other people with the condition.
Remember some people get better, and most people have episodes of better health. Keep up-to-date with research.
Posted Feb 21, 2017 by Catherine 1002
Relax. Join online forums and learn about your health options.
Posted May 4, 2017 by Ben 1079
When I got diagnosed CFS wasn't considered a real thing, everyone just figured in was being lazy & acting crazy. I lost my husband & every other person I loved except my kid. My best advice is to find something that explains CFS in simple terms & that shows its legitimacy & show it to the people in your life so they have an understanding of what you are dealing with & that it is actually a real disease.
Posted May 13, 2017 by missylob 1056
Accept your limits. Don't do what is too much for you, seek help, rest.
Posted Aug 27, 2017 by Emy 2050
Find a support group - on line or irl. Talking to people who understand will help. Read the Spoon Theory, and work out how many spoons you have in your life. Talk to your doctor about your symptoms and ask about medication to alleviate them. Gabapentin for neuropathy, Baclofen or Amitryptaline for muscle spasms, pain killers, duloxetine and opioids if the pain is severe. (I'm not a doctor, they are some of the drugs I've been on)
Rest before you are tired, ignore bad advice from well meaning people, pace yourself.
Rest before you are tired, ignore bad advice from well meaning people, pace yourself.
Posted Sep 5, 2017 by Shirley 2050
Get in touch with Open Medicine Foundation, Stanford CA USA to see if there are any "educated" doctors where you live. Educate these doctors further by referring them to OMF (www.omf.ngo). If you cannot work apply early for SSDI because in USA it will take years (they try to wait for your death rather than pay a penny in benefits). If I had more energy I would start a class action law suit against SSDI because the system is so corrupt, but so is CDC, NIH & HHS, unfortunately: all the government gate keepers are out to lunch on global epidemics.
Don't get bogged down with googling and researching this condition. It affects people
In so many different ways. Listen to your body, don't feel guilty for resting and try to surround yourself with positive, supportive people. Tell
people how the condition affects you - most people will want to understand and it will help them to cope with the changes to you.
In so many different ways. Listen to your body, don't feel guilty for resting and try to surround yourself with positive, supportive people. Tell
people how the condition affects you - most people will want to understand and it will help them to cope with the changes to you.
Posted Sep 8, 2017 by Sam 1400
Do your best to be seen by one of the top ME doctors.
Many claim to treat this illness but are not helping people.
Many claim to treat this illness but are not helping people.
Posted Sep 10, 2017 by Sharon 1500
Be strong u will.need to be
Most gps no very little
Do not let them push u with graded exercise
Abd also cbt as theyre harmful
Ignore the sceptics
Theres a big online support out there
Most gps no very little
Do not let them push u with graded exercise
Abd also cbt as theyre harmful
Ignore the sceptics
Theres a big online support out there
Posted Jan 17, 2018 by Annette 2500
Realize that pushing yourself physically may cause long term harm. Stop before you get tired. Plan for rest every day.
Posted Jan 18, 2018 by Tars99 1050
A newly diagnosed person should be told what is happening to them. They should be told that the situation is usually a life sentence without parole, but that the first 4 years are crucial, can make or break the situation. Therefore they should think of it as taking a vacation for 4 years, stopping literally everything. They should have no other responisbility than to let the disease have its way, to not interfere or fight it, to go with the flow and put all concerns on the backburner for awhile. To focus on rest, rest, rest.
I might not have done anything very differently, as I was a mother to a one year old, and not working. However, with knowledge and good advice I might have been wiser in my behavior. I remember being very stressed over whether I was contagious or not, for a very long time. Especially to my family. It was a waste of time, it is not contagious.
I might not have done anything very differently, as I was a mother to a one year old, and not working. However, with knowledge and good advice I might have been wiser in my behavior. I remember being very stressed over whether I was contagious or not, for a very long time. Especially to my family. It was a waste of time, it is not contagious.
Posted Mar 2, 2018 by Beti 2700
Be patient. Ask lots of questions. Treat yourself kindly. Don’t let anyone tell you that it is “all in your head.”
Posted Aug 9, 2018 by cathy 2500
REST
do not push through
rest
you are not crazy, you are really very ill
so rest and hydrate
had I gotten this advice
I would have rested and not pushed my sick body for over 10 years even after my Dx
and I might not be bedbound
do not push through
rest
you are not crazy, you are really very ill
so rest and hydrate
had I gotten this advice
I would have rested and not pushed my sick body for over 10 years even after my Dx
and I might not be bedbound
Posted Apr 6, 2019 by Fadra 2550
Lie down as much as needed and rest rest rest, take your symptoms seriously, not force yourself.
Posted Aug 3, 2019 by Jessica 1200
Take a look at the following video: https://www.facebook.com/ChemicalsAndChronicIllness/videos/482283219312338
Posted Dec 12, 2019 by Joanna 6200
Take it easy and rest and pace. If you push to do what you normally did, you will only get worse.
Posted Dec 21, 2019 by Pam 3550
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That does not keep a grudge for all those years lost, by visiting doctors who said that I invented a disease. Use your experience to help others.
Posted Feb 24, 2017 by Anabel Albornoz Molinari 1076
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Of good people around you. But people don't understand, so we see them away one at a time.
Posted Mar 9, 2017 by Edith 1050
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Information about your degree of fatigue, and then assimilate you and your family the disease, little by little, never give up
Posted May 12, 2017 by Marisa 1000
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search for indormacion and the go accepting
Posted May 25, 2017 by Yolanda Valledor 600
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Not to obsess, to analyze your life and remove from it everything that you see is detrimental to herself.
Posted Sep 11, 2017 by Eduardo Casasnovas 2950
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At last found the diagnosis !!!! Watch your head, and don't spend more....!!!!!
Posted Sep 11, 2017 by Haydee de bielik 5120
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It is a worm of doubts that are born when you receive the diagnosis of EM. Also the denial, and begins to walk in search of other opinions.
I would have given him an easy explanation and short of the disease for a while, given an explanatory booklet for further information and offered support for any doubt or question. Would not have said what you can get to be the EM in-phase more advanced.
I would have given him an easy explanation and short of the disease for a while, given an explanatory booklet for further information and offered support for any doubt or question. Would not have said what you can get to be the EM in-phase more advanced.
Posted Oct 19, 2017 by Heidrun Kroner 2000
