Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Oct 23, 2006.
what is it??
I am new to the forum, and am interested in starting on D-Ribose. I live in Miami. Where can I find a good source of it at a reasonable price either locally or online? Thanks.
help different people that it's very overwhelming to me. I was diagnosed recently with FM and CFS. The worst pain for me during a flare up is in my stomach. The only thing that has helped is a stomach tranquilizer called Glycopyrrote. I am wondering if anyone else has ever taken it and gotten good results?
The best thing I did was have a sleep study. I have alpha intrusion which prevents me from getting restorative sleep.
I was given Xyrem (the date rape drug) which I've been taking nightly for 3 years. I have improved so much that with pain medication during the day and Xyrem at night I hardly have a day when I can't function.
Many fms patients have a sleep disorder. Treating this problem has made a 75% improvement in my daytime activities.
I have previously been overwhelmed with the need to budjet my energy and do the essentials etc..
Just lately I have been going out to my back room and rearranging shapes, textures and colours to make pleasing patterns.
It is very transforming mentally and the activity is fairly low on energy..It is good to get lost in an activity and has been a bit of a new experience..
I wear a mask, when I need to use glue to make my creations permanent.
I have had fibro for more than 20 years... and have tried everything. So far, I think your recommendation sounds the best regimen. I will give it a try... thanks much.
hydrocodone for breakthrough pain
trigger point injections
outdoor activity when I can
read in bed to take my mind off the pain and depression
a compassionate hubby
watching funny movies and laughing
being as in control of my illnes as I can
owning 2 loving dogs
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.
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
Can you please tell me what the transfer factor is?
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.
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.
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.
I am a former CFS sufferer. What worked:
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]
What do you do to sleep better?
How do you obtain transfer facotr?
what medication do you take to sleep?
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.
Cymbalta has changed my life, I have little pain, please give it a try!
pLEASE TELL ME WHAT THE SHAKE IS
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!
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.
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