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Readers Respond: Tips for Living With Fibromyalgia & Chronic Fatigue Syndrome

Responses: 63

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Updated April 08, 2009

I've shared 10 little things that work for me -- now it's your turn! Help us all learn to manage our symptoms better by telling us what helps you. Share What Works for You!

In general

I have ra and Fibromyalgia, and every thing to go with both. It is very hard. I was trying to work 8 hour days. drive to work 30 minuts each way. My hands hurt with spasms degeneration, swelling. my sholders hurt from wearing a bra and so did my back where it hooked, I was totally miserable trying to manage the symptoms of 2 diseases, and sometimes they would both flair real bad at one time. Im not trying to encourage anyone to quit working, but if you are working full time and have both diseases or even lupus with RA, Then you will get to the point of doing something. I woeked and came home and there was dinner, laundry house cleaning, all of the every day life that a mom or wife has. I am now on short term disabbility now, and I am hoping that I will be able to get long term. I wore a gel bra that stuck to the front of my breast for a long time and they were great, but there is no support. I now wear the genie bra ladies. the one that is as seen on tv. They are wonderful. try them
—Guest Brenda

What helps me w/FMS

Thanks much for this upbeat, positive report. Your tenor alone was restorative to me. When pain/fatigue are extreme nothing works as well as resting, lying down, and sleeping. Accepting limitations, but being realistic about management. There are amazingly good energy-filled days when I can put my pain level in the back of my mind and not focus on it forst and forefront. I really appreciate the good "sunny" days. When pain is "to the moon Alice!" To quote Jackie Gleeson as Ralph Kramden in the Honeymooners - I sometimes pat myself, or give my shoulder a 1 second rub. I do this as if I was a good friend - it's a non-verbal acknowledgement that I'm truly sad and sorry that my body hurts so bad. Today I had to scream back at the pain...this makes me LOL now upon writing. When I yelled I was thinking, "this pain is through the roof! How do 'they'? Expect me to tolerate this' Then I lay still for 2 hrs w/a pillow under my knees where the FMSs been acting out the last 10 days.
—Guest XoW

Bamboo Sheets

I have found that 100% Bamboo sheets are wonderfully soft on the skin and breathe well. They are expensive but they last a long time and just get nicer as they get older. Don't use fabric softener with them.
—Quaterra

Fibromyalgia Chronic Fatigue

Fibro and extreme exhaustion for 15 years. Did a Candida saliva test-positive. Started taking Probiotics 30 billion per capsule, and Monolaurin capsules, 800 mg. per capsule. 90% of my symptoms were gone in three days. My muscles no longer feel like they are being pulled off of my bones. Thank you God for answering my prayers. The Monolaurin can be hard on your system. It created nausea with me. I am going to take it before I go to bed tonight and see if I can sleep through it.
—Guest winnierenee

Firstly, be kind to yourself (and yoga)

I've only had fibro for a year but lots of things have helped a little, it all adds up. Following Dr Sarah Myhill's supplement advice on her website; cutting gluten, dairy, preservatives, artificial colours and flavours, caffiene and alcohol (of course); hot baths with Epsom salts; heat packs; mediation; yoga (no matter how rough it is, I can always do restorative yoga poses); find a caring friend who perhaps has it too and can sympathise with you; perhaps most importantly be kind to yourself, the kindness and care that you'd show to someone you love who is going through what you are. (I'm going to put in another plug for yoga, it's helped with balance, concentration, strength, relieved body aches and given me peace). Thanks Adrienne too for the fantastic columns, there is so much wisdom, empathy and good advice in them, you've made my life easier.
—Guest Sarah

Go Alternative

In conjuction with western medicine Ive also adopted an alternative approach. This has worked wonders for me and I hope it might assist others as well. 1. Alkalize your system, acidity is the root of many problems. Avoid all refined sugar & drastically reduce dairy & gluten intake. Eat plenty of green vegtables. I use alkalizing powder daily & drink a dash of lemon juice or apple cider vinegar in water, also green tea instead of coffee. A pinch of sodium bicarbonate also works if you cant find alkalizing powder. 2. Ayurevedic medicine, I take a tspn (1/4 - 1/2) of Tumeric & Cayenne Pepper mixed in water. This is superb for reducing inflammation in the body. Gargle with a mix of Cayenne & Apple Cider vinegar mix in water to cure a red raw throat - works like a bomb. 3.Acupunture, find an authentic practitioner. Per session approx 20 needles are inserted into key points. This works to clear energy blockages, allowing the Qi to flow again. The pain relief is amazing. 4. Ive increased my
—Guest Bonnie

Clothing pressure

Especially for Stinglover: When I was about 12, I developed an aversion to the elastic waistband of my panties. At that time, they all hit at the waist, so for several years I wore them rolled down, then bought bikini style when they became available. When I was in my 30's, I got to where I could not stand the pressure of the elastic band of my bra, no matter how wide or thin, soft or stretchy. When I was diagnosed with fibro at 34, my doctor decided that I had been showing symptoms since I was a child. So I have developed a habit of wearing only the softest, non-binding clothing. I have not worn a bra in over 15 years, not even for formal occasions. I found a gel adhesive bra that works for those times when I MUST appear to be wearing a bra, but most of the time I decide that the world will just have to put up with me; I'm already dealing with enough without having to deal with their sometimes rigid ideas of what is and is not appropriate for me to wear. So give yourself a break
—Guest Linda

detoxifications

My fibromyalgia is exacerbated with bouts of candida, so I use Yeast Busters Kit 4 times a year to combat this problem. It cleanses my colon and eliminates toxic build up, which also I find I have sensitivities to toxins and high acid diets. I the rebuild my dietary plans from an alkaline nutrient based plan, and gradually introduce my weakness for high acid foods, like meats, sugar, ... The cleanses provide noticeable relief from the pain, exhaustion and irritability. Also, hot showers and baths, heating pads help. For the restless leg (and sometimes loss of leg use) I use peppermint or cooling lotions and ice packs on my feet, behind my knees, on sacrum area. I have not found beneficial Meds. I am presently experimenting with doses of pain Meds and an anti-inflammatory, as the antidepressants, sleeping pills, Cymbalta, ... do not work for me.
—Dawn54321

Lotions

Baby lotions! Milder scents & they're made for delicate skin. I like Shea Moisure!
—Guest Shelly

what helps

Using an electric blanket or Mattress pad is essential. Hot tubs should be given by prescription. Changing the sheets every couple days due to Princess and the pea syndrome. I've been dealing with fms for 24 yrs these all help me
—Guest deb

Fibromyalgia recovery

After being totally disabled with FMS, I have been out of pain and off meds for 13 years. I did it by balancing my hormones, initially balancing brain chemistry, cleaning up my diet, and clearing some toxins, which is likely something you won't hear in your doctors offices. What a happy surprise to experience recovery! I have been studying and working the past 13 years to help others in their recoveries. I want people to get well. Out of a passion to help others get well, I have written Reversing Chronic Disease: A Journey Back to Health, which is endorsed by Dr. Jacob Teitelbaum and 2 other MDs. Dont accept the word "incurable." Keep fighting for restored health. If I can get well, why can't others...people like you. I believe something better is out there with your name on it. Patricia Stephens, Certified Nutritional Consultant www.reversingchronicdisease.com
—patsycnc

Diet Changes Works!

Sick of toxic drugs & ineffective Dr's help, I got serious about real food and over 2 yrs, w/out being able to exercise, I've lost 65 lbs, went frm 10 rx's to 4 meds & have a life again! No processed foods, grains, HFCS, soy, aspartame, soda, even diet, try to eat organic, raw and/or natural state, green tea, juice fruits & veggies & good muti Vit/Mineral...it all really works! Good luck & GOD bless!!
—Guest Texas Carol

good sleep

I have been using Xyrem for 6+ years. With a cpap machine to boot. This way I get good, deep sleep. I take one dose at 10:30 pm, and when I wake, around 2-3 am, I take the second dose. This liquid medicine enables me to have the deep stages 3 & 4 of sleep. Deep and satisfying. Now I'm not stiff in the morning and I have more energy for living. Not for a whole day, but half a day. I take Pilates, it keeps me strong and stretched, and I get messages twice a month. I do take vitamins and supplements. I just wish everyone could get a sleep study and have a sleep dr. and get a prescription for Xyrem.
—Guest Abot Bensussen

What Works for Me

I was told about distilled water several months ago. Since drinking it the Fibromyalgia pain has improved and I don't mind getting out of the bed. My son noticed a difference the very next day of me starting distilled water. I still hurt, but it's tolerable. I am allergic to the new Fibro medications therefore this is the best option for me.
—Guest Pat

Pilates, shoes, and heat

I have had fibromyalgia for over 20 years. I'm doing so much better now. Not pain free by any means but at least I can say I have more good days than bad. One of the biggest things that improved my pain was taking reformer pilates. It's a machine that stretches the muscles and builds up core strength. Yes, it hurts afterwards for several days but it's a better hurt than the fibro. Also, changing my shoes helped. I now only wear Dansko clogs (Kohls has a very similar version for much less money). They give my feet, legs, and back good support. I'm a teacher so I'm on my feet all day and they no longer hurt from standing, There used to be days when I had to tape my feet and ankles before work they would hurt so bad but since pilates and changing shoes, I don't have to do that. The last things that really helps is heat. I make my own rice heating pads and they help me relax. The rice holds the heat for a long time and it molds around the body.
—Guest Glenda

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Tips for Living With Fibromyalgia & Chronic Fatigue Syndrome

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