What Worked for Me

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Oct 23, 2006.

  1. ridfibromyalgia

    ridfibromyalgia New Member

    Boy, I have to say that I was completely unhealthy and had to do a major overhaul of me. I detoxed, changed my diet, gave my body the chance to heal itself through supplements, probiotics, and vitamins, and then worked out a healthy lifestyle of exercise, diet and meditation, and I am not a whoodoo meditator, but incorporated relaxation techniques.

    I was so sick and had no choice but to overhaul my entire self to give me a shot at health again. I visit boards everywhere to see what people are doing that works. I developed a website for FM sufferers and I hope that we can all help each other out.

    Best of luck to everyone.
    Hailey
  2. lil_fish

    lil_fish New Member

    I have had FM for 37years now. I had hong kon flu followed almost immediately by glandular fever. I couldn't walk without crutches and was just about wheelchair bound. I changed my mental attitude. DON'T think of yourself in comparison to other people or what you used to be like.
    DO say you're feeling great when someone asks you how you are. It makes them feel good and you start on the positive road every time you say it. Say it enough and you'll convince this poor tired body that you are.
    Do swim. I swim 1 hour every day. It started out with 250 meteres was all I could do I now do about 15-18K a week (that's 3K in the hour). Never do more than an hour no matter how good it makes you feel. Yes you will probably be writen off for the rest of the day but as your fitness levels rise so does the amount you can do.
    DO have massages but not sports massages. Just a firm remedial massage not too hard.

    Try really hard not to do the woe is me bit and say isn't it great I'm sitting up in bed reading of whatever. We have only one life and just cos ours sucks doesn't mean we should enjoy every bit of it we can. Love to all of you who suffer but enjoy the other bits with absolute passion.

    I have had FM long before it was a diagnosed illness.

    Don't take too much stuff. Toxins aare a big problem building up. that's why massage helps it forces the toxins into the lymphatic system and out.

    I take zeolite whick help rid the body of toxins. Also fishoil, glucosamine and magnesium. Eat well stay happy and motivated and it won't seem so bad
  3. erinnella

    erinnella New Member

    Can you please tell me what the transfer factor is?
  4. ellielottie

    ellielottie New Member

    Hi

    There seems to be lots of good advice here - all quite similar to the things I found very helpful for me.

    It's been a while since I had any problems at all with my CFS (although at one time I spent three months in bed). So it is tricky to remember everything because lots of things I don't bother with anymore. I am back in full time work - I can drive, remember things, i have just been on an active holiday, even colds don't seem to knock me back much now...hope i don't regret saying that...

    Roughly this is what i did to recover ...

    1 Don't exercise....the idea is to SAVE energy.

    Build up reserves by eating well and resting.

    2 EAT alot of the right things.
    No junk food, no sugar... following an anti candida diet for the first few months (bit of a killer but important) and excluding any allergens like dairy or gluten if you find it helps. I cut dairy out and reduced gluten. I still avoid dairy. I ate lots of protein and found that as i recovered and went back to work with just a few bad periods during the day I could snack on meat or nuts and get almost immediate revival! I made sure as much of my food as possible was fresh and raw so I could get max energy from it.

    3 SLEEP
    Even once you are out of bed and moving around during the day continue to go to bed early. Any bed times before ten really make a difference.

    Getting to sleep can be difficult so having a strict routine is important. You have to wake up at the same time everyday ..reasonably early...and then even if you just stay in bed and rest..try to stay awake and out of deep sleep for the whole day so you can get to sleep at night.
    A twenty minute knap is ok.

    4 Take good prebiotics and probiotics. I used threelac with oxygen drops.

    5 Avoid chemicals
    i had reactions to hair dye so i cut out lots of chemicals to see if it would help. I don't know if it did because i did this at the same time as everything else.

    6 Various Supplements and Vitamins.

    7 Echinacea


    8 Sit outside...get oxygen

    I wrapped myself in covers so i could sit in the garden and get oxygen even when it was cold. I had to avoid sun and heat to start with because my bodies thermostat was messed up and it seemed to drain me of energy. These days I find heat soothing on aches and pains.

    9 Be nice to yourself.
    It's not your fault, you can recover but recovery comes on gradually... don't get mad at yourself when the brain fog makes you stupid. Work in treats into your day somehow. I found listening to speech radio very calming and made me feel as if i was doing something. When I started this routine I had ten minutes of energy a day. By the time I finished I was able to go trekking in a rainforest.
  5. alightinaugust

    alightinaugust New Member

    I am a former CFS sufferer. What worked:

    ALCAR
    Green Tea
    Ginseng
    Whey protein (incredibly helpful)
    Low/no sugar diet
    Tons of water

    If anybody needs any suggestions for their specific situation, email me: alightinaugust at gmail.com

    I'm not necessarily anti-western medicine... I just believe that natural/more hollistic treatments for CFS are much better.

    If your on prescription pain pills, that's not a long term sollution. Don't manage the pain; defeat it.

    Good luck and god bless.
    [This Message was Edited on 01/03/2007]
  6. lovebliss

    lovebliss New Member

    What do you do to sleep better?
  7. lovebliss

    lovebliss New Member

    How do you obtain transfer facotr?
  8. lovebliss

    lovebliss New Member

    what medication do you take to sleep?

    David
    Seattle
  9. janmiller306

    janmiller306 New Member

    I take (prescription) 1/2 Lorazepam-1 mg. 2 or 3 nights a week so they don't become habit forming for me. Even if I don't get a good nights sleep on the other nights, it helps some.
    I have also tried valerian root. My cousin takes Gravol.
  10. neisy

    neisy New Member

    Cymbalta has changed my life, I have little pain, please give it a try!
  11. HUTCHINGS

    HUTCHINGS New Member

    pLEASE TELL ME WHAT THE SHAKE IS
    THANKS
  12. jarmie

    jarmie New Member

    Cath!
    You are singing my song mate!
    I have also found that walking for 30 minutes a day really helps! But what i really love is the summer! (summer here in Australia now) next Monday I'll be sitting in the sun and swimming in salt water. this combo makes me feel like a new woman. During the summer try standing in the morning sun for 10 minutes or go for a walk in the sun.your vit E will sore. lets face it! Us CFS pple are solar powered!
    Also I make sure i'm in bed by 10.30pm (during school) and up by 9am. If I sleep any longer I feel out of it for the rest of the day. I then go out the back (in my jarmies) and stand in the sun. During the winter the best i can do is stand under the kithen light. (I tried Light therapy but all I got out of it was a headache).
    Oh! I also want everyone to know that my Nik name is jarmie because my name is penelope Jane (pj) But pj was taken!! lol
    I have made some great discoveries on this site and I really do feel empowered!
    Can't wait to hear from everyone!
    Pen
  13. jarmie

    jarmie New Member

    WellKid
    isn't interesting the way you adapt to the whole deal.
    When I wake in the morning (I set my alarm 20 minutes before I get up so I can wake up) I think about what I have to do and the best order to do it Because of my energy levels.The number 1 on my list is a 20 minute nap before my kids get home from school so I can get thru the homework dinner prep and bed time prep. my 15 yr old is fantastic. He helps me so much. I was hit at the age of 17 (i'm soo not telling you how old i am now)and I'm still feeling the effects of those 2 yrs in bed. Sometimes it breaks my heart because my kids can see when I'm slumping. When they get up in the morning they know when I have had a bad night and they they say to me "bad night mum?" So the kids have had to adapt too!
    If you want relaxing music try jose gonzalez Snow Patrol and Train.. If you need a pick me up try Any type of dance music that apeals to you. If it wasn't for music I wouldn't have recovered the way i did.( I now habe an ipod nano and i love it)
    And wellkid. If you are the age I think you are. You will find that you will mature alot faster thatn your mates. Don't let this get you down. They don't understand. No matter how hard they try.Just go with the flow. Go out when you feel well enough. Don't skip a night out because you are worried about the next day. Go out on F friday night and sleep they next day away.don't miss out. And if your mates are like mine. They will look after you.
    Jarmie
  14. Spring123

    Spring123 New Member

    This message is for Neisy...my doc just prescribed Cymbalta for me. I have CFS but was never actually diagnosed w/ FM. I did complain of leg & back pain. Do you take this for CFS or FM? I am hesitant to take it because i am not at all depressed. my main problem is fatigue and i get sick often with flu like symptoms. Do u think Cymbalta will help me?
    [This Message was Edited on 01/15/2007]
    [This Message was Edited on 01/15/2007]
  15. Ales

    Ales New Member

    My CFS started suddenly like a flu nearly 9 years ago. From the begining I knew it is a brain disease. From the neurological point of view CFS manifested like a dementia with a terrible dizziness, from the physical point of view CFS resulted objectively in a decrease of physical power of more than 99.99%, from the imunological point of view I "caught nearly all that flew around me" and I had constantly sore throat. There are theories of CFS experts that the immune system reacts inappropriately to a more serious infection which results in a brain damage.

    I responded dramatically to citalopram (Celexa in your country) 4 years ago. I took this antidepressant more or less accidentally since I had no depression. The effect was miraculous although it did not lead to a full recovery but I fully realised that CFS is a brain disease. Since then I have tried over 50 neuroactive drugs. I also noticed that the dosage of these drugs is very important and that some of these neuroactive drugs can be seriously harmful. Currently what works best is: 10 mg citalopram, 200 mg amisulpride, 50 mg amitriptiline, 100-200 mg gabapentin. As a result I am able to work full-time.

    Sincerelly Yours

    Ales

    Czech Republic
  16. maeflower

    maeflower New Member

    Hi. I read your What works for me. I tried exercise and I hurt so bad I had to stop but my doctor wants me to do it anyway, My question for you is; When I go to bed around 10 I lay awake for awhile until I have to get back up and usualy I have a snack. When I go back to bed I lay awake for a while or I may fall right to sleep. Do you have a suggestion on what I might do. When I am not working I cant get out of bed until 8 or 830. When I go to work I feel so tired I want to quite and that I cant do.
    Any suggestion will be a help. Thanks
  17. maeflower

    maeflower New Member

    Hi where do you get your vitamins and all the things you take? Linda
  18. jlarsen

    jlarsen New Member

    I have FM and live a pretty productive life, work full time, selling appliances. We are having a very cold winter and my pain level has really gotten out of control. I take Tramidol and a muscle relaxer but seems to not be too effective this time of year. I was reading other FM people "What Works for Me" and noticed several take Fibro Multi with Malic Acid. I just ordered my first 30 day supply. You requested what was in the shake? Did you find out I would also like to know......
  19. twiggles

    twiggles New Member

    The biggest thing that has helped with the brain fog and sudden nap attacks has been avoiding toxins such as perfumes, cleaning chemicals,scented personal care products, and cigarette smoke. Last year I discovered that almost instantly after smelling cleaning products my brain would fog up and I would get really drowsy. this explained why I would get so drowsy whenever I tried to do housework.Stores are bad too because of the cleaners they use and all the smelly scented products that they carry. I also often felt crappy and was ready to go back to bed after I had my shower and got dressed. Now I know that it is because I had just put fragranced shampoo on my hair, fragranced lotion on my skin an makeup-particularly bad is foundation- on my face. By the time i was ready for the day I was sleepy and brain foggy.
    Switching to fragrance free , chemical free products has made a big difference and has been easy because my local grocery store has a fairly good organic section and carries every thing I need
  20. NyroFan

    NyroFan New Member

    Hello ProHeath:

    I believe that 'good' medical care rules of over much.

    There are so many of us who do not have it (I think so for myself) and yet it is so improtant.

    My doctor, for example, takes on a very cold nature and just writes the prescriptions.

    What can i do?

    nyrofan