Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
HI
I know that we all have different symptoms and experiences with this illness but I am trying to get together a protocol for myself so even if I cant get better I can at least try to stabilize this condition to a degree
So was trying to get an idea from people what they think helps and what makes them worse,
I am interested in everything for day to day lifestyle, diet, supplements, medication, pacing, relaxation and anything else that helps.
It would be great if anyone can give me an overview of all of what they do, I still work part time and I know this doesn't help with the pacing so any ideas here would be great as well
I had a gradual onset and I know i have been gradually getting worse for the last 4 years and really don't want to get any worse, I know some of you have suffered a lot longer so are probably more experts than me, I struggle with my eyes with light sensitivity so don't have the option of going through the net to search for ideas so hopefully you can be of some help
Thanks so much in advance
Luna x
I know that we all have different symptoms and experiences with this illness but I am trying to get together a protocol for myself so even if I cant get better I can at least try to stabilize this condition to a degree
So was trying to get an idea from people what they think helps and what makes them worse,
I am interested in everything for day to day lifestyle, diet, supplements, medication, pacing, relaxation and anything else that helps.
It would be great if anyone can give me an overview of all of what they do, I still work part time and I know this doesn't help with the pacing so any ideas here would be great as well
I had a gradual onset and I know i have been gradually getting worse for the last 4 years and really don't want to get any worse, I know some of you have suffered a lot longer so are probably more experts than me, I struggle with my eyes with light sensitivity so don't have the option of going through the net to search for ideas so hopefully you can be of some help
Thanks so much in advance
Luna x
PACING Learn to quit activities before they make you tired or make your symptoms worse. To learn how much you can do without tiring yourself, begin with what you can handle on your very worst day. (For me this was nothing but screen time on the couch.) If it goes ok, add a little more each day. If you need to take notes. Some times of day you may be able to do more. It will probably get worse and better over time. Sometimes a crash sets you back and you must begin building up again.
EAT HEALTHIER
1 each of the 7 color groups daily: http://extension.missouri.edu/hesfn/phytochemicals/colorwheeltable.htm
Eat iron rich foods with vitamin c foods
Avoid corn syrup, trans fats and artificial sweeteners
Try to eat every 3 to 4 hours while you are awake
Don't skip breakfast
Don't skip food groups
When getting grains, look for more fiber (at least 3g per slice of bread)
Eat chocolate
Eating bad is better than not eating. Try to have frozen and easy to prepare meals and snacks in case you just can't do it.
10 minutes of sunlight every day if you can
If you live with someone, pick a hand signal to mean I can't talk right now, I'm too out of it. Also let them know of what is and isn't helping.
Keeping up with everyone and pretending you don't have cfs wears you out faster. Find things that help you last longer. Some things I do are sit instead of stand, walk slower, and telling people to help themselves instead of do everything.
If you can, hire someone to do housework.
Ask someone to help you grocery shop or do it for you.
As much as you can, stop feeling guilty and bad about the cfs. Getting that weight off will give you more energy and make you feel better. It's easy to get stuck in the negative parts, and forget the positive parts of cfs. What in the world is positive about cfs? Now more than ever, relaxing is good for you. So is daydreaming, laughing, and taking naps. Sweet. Oh yeah, and chocolate. It's good for cfs, yay!
This is a great post! And this is my first reply since I just joined a minute ago!
- I do my best to only do the chores & errands that I am in the mood for. And I only do what I can for each day without overdoing it.
- Frequent resting and naps throughout the day and evening.
- Reserve the little energy you have and do not run on empty.
- Light exercise and lots of fresh air.
- Keep stress at a minimum - such as driving roads with less traffic, work half days when possible, etc.
- I do take a multivitamin/mineral daily with extra added supplements to help with energy and brain function and to help build immunity. Here is the list:
- Fish Oil
- Green Tea Capsules
- Rhodiola Rosea
- Sulbutiamine
- Vitamin C
- Amino Acids Tyrosine, Taurine & Acetyl L-Carnitine
- Echinacea
- Coenzyme Q10
- Testosterone Boosting Supplements (Fenugreek Seed, Maca Root & Tribulus Fruit Extract)
- Medications: Lexapro for depression (I take it in the evening because it can worsen fatigue.
- Modafinil or Armodafinil (Brand names: Provigil and Nuvigil) to keep me awake.
- Acetaminophen / Extra Strength - For painful joints, muscles, achy flu like feeling.
- Caffeine Tablets, Coffee, Energy Drinks (Monster)
- I try to eat healthy with much protein - Chicken, Beef, Fish, Pork. Vegetables, Salad and Fruit. Grains: Oats, Brown Rice, Whole Grain Bread & Buckwheat. Some junk food to boost mood...LOL.
- I try and eat 6 small meals a day to keep blood sugar level.
- I try and drink 8 to 10 full glasses of fresh spring water a day.
- Have lots of quiet time. Seek peace and pursue it. Spend time with good friends and family. Love, laugh and enjoy life!
*I hope this all helps! Be well.
The only thing extra I do is take at least one hot bath with scented epsom salts and lay with hot pads.
I, too, take a lot of supplements: Mutli, Adrenal Stress, Amino Acids, HM Chelate (for something else), Vit D, B, C, and E, fish oil and magnesium.. prescribed Cymbalta, progesterone, armour thyroid, estrogen cream, depakoate (unrelated) and morphine for Fibro and Myofascial Pain.
I have had trouble pacing in the past. when I had a good day, I overdid it and was knocked out for at least 2 days. I'm trying to be better these days. Really wish I could exercise more. I did do some Yoga for Fibromyalgia from Youtube, but not consistently.
Oh yeah, I love the steam room and hot tub at local rec center.