10 Things All Fibromyalgia Patients Should Have

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edited January 2015 in Coping

Fibromyalgia article: 10 Things All Fibromyalgia Patients Should Have10 Things All Fibromyalgia Patients Should Have

Sarah shares ten of her favorite fibromyalgia products for reducing and managing pain. Do these things work for you?

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  • If We could afford it my suggestion would be an adjustable bed. My husband who has Parkinson's has asked his Dr if insurance or Medicare would help with that but we haven't heard back. That probably means NO. I have one of those better foam pads for my side of our bed and husband has a regular one. Mine keeps me comfortable sitting up in bed tho it's a pain trying to get the pillows right. I have Gerd too which necessitates sleeping partially upright. I also use a CPAP machine for Apnea and take a lot of meds for various things and would like to eliminate
  • The adjustable bed suggestion is a GREAT one! My husband and I have our own twin adjustable beds we push together so were not separated but can adjust our comfort level! I was EXTREMELY lucky and found our beds at a thrift shop for $50 each...yes I know unbelievable! They have been AMAZING!!
  • @Grandmama16 My mother had a hospital bed. Well, she still has it but now is in the garage. See, she wieghts about 185. The bed was accually to small for someone of that size. But, Medicare would not allow her to have a bigger bed, unless she wieghted 220 lbs. more. That I do not understand. She also did not quality for a nice foam mattress to on top of mattress, cause she did not have bed sores. So strange are the rules for people. She also, uses Cpap, and is diabetic so things do not come easy for her.
  • I have a Sleep Number bed which has helped. My partner broke his back in 3 places while in the Navy during the Viet Nam War. He also has fibromyalgia, and this bed has helped! Even though we suffer almost the same problems my number for the bed is set at 35 while he does better at 80! I only thing I wish is that when I bought the bed they would have had the adjustable ones at that time. Now they do, but I cannot afford another bed as they I paid almost $3,000 for the one I have. Also I am investigating in Essential Oils that might help to rub on and have someone massage it in the sore areas. DoTerra Essential Oils are suppose to be very good. I also use a product you spray on called Nanofreeze and that has been helping better then the creams the doctors prescribe for me. As far as the DoTerra Oils, I met a lady when I still lived in PA, Alice Rahn, and she has a Facebook Page Group called "Discover Wellness Naturally" She has given some suggestions for what to use and I am interested in trying them. God Bless All, and never give up on this journey we were put on!
  • I was recently diagnosed with Fibromyalgia and also have some layering conditions. We have purchased a sleep number bed an adjustable one with the memory foam. I would say that's a must for a better nights sleep. Lyrica has done wonders for me. That foot pain you were talking about, I spent a fortune in shoes and after taking lyrica it's so much better. Of course I have to watch certain foods that i consume. I also want to try essential oils I have heard they are great. And for me I need to watch my stress and i have eliminated alot so that helps.
  • I used to wake up with knives in my back. I ordered a memory foam mattress from Amazon and was cured over night, I haven't had knives in my bad upon waking for about four years now.
  • Two things that help me: 1. Two Old Goats fibromyalgia cream. I think you can find it online. It is loaded with essential oils and works wonderfully! I use lots of other essential oils and sell them, as well as creating and selling my own proprietary blends. I have severe fibromyalgia and sometimes when the pain medicines won't work, these products do! 2. The other thing that I love is a TENS unit by Tony Little that I purchased on either QVC or HSN. It is small, portable and comes with everything you could need! I got mine for around $90. It's basically electronic stimulation with all sorts of options as far as strength and type of pulsation. You get the same type of treatment if you go to physical therapy and pay that much for just one dose of electronic stimulation aka E-stim , but this little portable TENS unit I can take absolutely anywhere with me and they even had it in pink! :-) Please check it out friends! It really does help. Sounds a little scary at first, but trust me it's not.
  • Just a question really. What suggestions do you have for the fatigue. I was never one to sit still much, and it is very difficult for me physically and emotionally to be like this.
  • thanks for the tips. i agree with all of them. i always buy my sheets from nomorerack.com. they are usually on sale for $29 to $59. for the 1800 series. they are so soft and soothing. i am able to sleep better and at least more comfortably with them No i do not work for them or get a kick back.. you all know that we need any good advice that we can get...Comments please. (they come in beautiful colors and you get 4 pillowcases with the queen and king)
  • @Debbie72
    Dominie Bush had a site for years and it still have all the volumes of information on FMS she posted. She also has lots of information of Essential Oils. Dom is on FB at the name above. She's more than happy to help you, I know they've helped her.
  • Having an animal helps more than you could imagine. First, they need to be walked, so they keep you moving. I know it's painful, but it's more painful to rest too much. Second and the most important thing, they love you unconditionally. Family members do too, but let's face it, they can get frustrated by your constant pain. That stresses me out trying to explain things, but they just don't understand sometimes. My dogs don't care that I have pain. They do care that I am sad and they will do anything to make me happy. If that means snuggling up with me, then that's what they will do. If that means I get kisses and they get belly rubs, it just makes them happy making me happy. I can't completely explain how my dogs calm me and take my pain away, but they do. They love me, keep me exercising, snuggle with me, give me kisses and let me rub their bellies all just to make me happy and stress free which helps with the pain levels. Everyone needs a dog, or cat, if they want to keep the stress levels down and not allow the pain levels to go up.
  • Still learning how to adjust when I get hit with feeling lousy out of the blue. Like about an hour ago! Had been feeling great and busy all day. Then BAM, feel so rotten, just want to go to bed! We were supposed to have famiky game night but now we're not because mom is sick again. Thank goodness my kids are older and I am blessed with a loving hubby!
  • I so wish I were able to sleep in a bed again! I have been confined to sleeping in a recliner for years now :/ no way i could manage a bed. I do however, buy the best of the best, a lazy boy recliner. the ONLY one that offer materials that don't irritate my skin and has a lumbar support in every chair they make. Stinks, but how my life is.
  • I found sheets at Costco here is the U.S. are affordable and wash up beautifully. I need things to feel nice, rough things hurt my skin.
    I was just dx'd last spring and am still learning how to navigate and make the most of it some how....
  • The one essential for me is a hot tub. I soak almost every morning before work. It helps with the stiffness and maybe the pain too. I guess a large garden tub would also work. It's important for me to be able to fully stretch out. For me, the second essential is a focus outside of my home and my pain. I work just short of full time, have a garden and do community volunteering. It's sometimes difficult, but it keeps my life from being all about pain and fatigue.
  • Hello every one! I am new here and this is my first post! I have every thing that each of you have brought up! Life sucks being a fibro sufferer! As simple as this sounds I find the best thing for me to get through each day is to force my self to my feet and to get out of the house and get interested in something some chore etc. that needs doing and I dive in even if it is a slow slither I get to it and I find once I fill my mind with doing this chore I feel better and I can go for a few hours maybe two, I go untill I am so exhausted that I am struggling to hold my hand up to do any thing! so at the end of the day I feel as crappy as I did when I struggled to get out of bed that morning! But I had a couple of hours of feeling like I am something of value! But I must say each day is a struggle and to be honest I would give anything to get rid of this monster that has taken my life from me! Keep fighting!
  • If you can't afford a new mattress, a memory foam mattress pad or topper can work wonders. Also swimming.and a hot tub. If you don't have access to either, one option is a blow up hot tub. They sell for around $400. You don't need plumbing for it, just a place large enough to put it and a hose long enough to reach it to fill it up. Also I use an ultra sound machine for my neck, shoulders and back, a decent one sells for around $300. A large heating pad with a moisture insert is around $20 and one of the best investments I've made. To the lady wondering about fatigue, ginseng can help and magnesium. I have to take frequent breaks when doing chores and I have to plan all activities in advance to make sure I don't overdo it if at all possible. I try to plan most things early in the day when I'm not so fatigued.
  • @BeckyBadger @Grandmama16 I was able to get an RX for a Tempur pedic bed and while insurance didn't pay for it, I was able to use it as a medical expense write off for tax purposes!
  • I bought a new mattress, then I bought the best thing I've found to add to the mattress. It's a pregnancy pillow. They come in different sizes but I went for the U shaped one, and you always have support it's amazing. I've also bought a Teeter (for those of you that haven't seen it) it's a thing you lock your feet in and turn upside down it stretches out your back and its great for me because my lower back after about 20 minutes of bending gets sharp pains and one tip back it stretches and I hear that pop that's music to my ears and instant relief. To get moving in the morning we invested in an elliptical, I use it in 10 minute sessions several times a day. I use a tens unit and asper cream, and hot baths. So far that's helping a great deal. Now to get the hot tub or move from Indiana to Florida to ease these winter pains. I don't have all the answers but I'm going to try every way possible to help relieve my pain besides being put on more drugs. So far every one they have tried me on I have had adverse reactions to, not looking to become a Pharmacy. I refuse to be put on Lyrica, those side effects are crazy! Hope this helps someone and you can find those pillows on Amazon for around 40 to 50 dollars
  • I am new to the community. I have suffered with Fibro for more years than I can count. Was finally, officially, diagnosed with fibro back in 2009 or 2010. Have done the adjustable bed thing and for me it caused more pain than it was worth. We went and bought a new mattress and frame for the mattress/box springs and besides the bed being really high in the air, I sleep like a baby. Most of the time I can sleep through the night. To help manage this I am on several meds for sleep, as I have a sleep disorder as well. I also suffer from 2 different migraines and when the migraines are really bad I am not able to talk because I have stroke like symptoms. When the fibro and the migraines gang up on me, it is a fight for my life and to do whatever I can to get the pain level down to a dull roar. I sleep with a body pillow. Have done this for 30 years or so. I find this really helps, for me. I can get myself situated with the body pillow and then get my head comfortable. Then I can pull the covers up and within about 15-20 minutes, I am out like a light. I have found little things that will help but they all have been mentioned. The one thing I do that helps a lot is when I am sitting at my computer, I have a heating pad on my hips and lower back. I even do this during the summer.

    Gentle hugs to all!
  • Sorry, I forgot something very important. I have 3 very loving chihuahua dogs. One sleeps at the small of my back, another sleeps at my chest, and the other one usually sleeps under my pillow. She has been generous enough to all me to use a part of my pillow, lol. I don't know what it is about chihuahua dogs that they can diminish your pain, but I wouldn't trade them for anything.
  • @summerdawn After years of debilitating pain and crushing fatigue, I sought out one of the country's top rhuematologists. After very thorough assessment, his treatment plan for me is so simple...the man's a genius! Off-label use of anti-depressant for sleep (severely allergic to "sleep" meds) and...RITALIN!! I take 10mg three times a day. I'm like the Energizer bunny! And, because I'm actually able to be physically active, I'm tired at the end of the day and able to sleep! This med regimen combined with finally understanding that Cognitive Behavioral Therapy is NOT another way for doctors to minimize my physical experiences has changed my life. I still have "bad" days, but they are the exception, not the "norm."
  • Hi! Good discussion. I do have to say, however, that backpacks do not work for me. Clutches (small, only essentials) work best. Sometimes I keep a tote bag in the car with topical medication gel, sunscreen and other large items. That way, I can take a small clutch into a store or whatever, but the larger items are just a quick walk away if I need them.

    As for a bed, I bought a very affordable memory foam mattress from Ikea, along with a bed slat mechanism that is adjustable to sit up or lie flat. Many people (like me) can't afford the more expensive models.

    I can't tell you how important the good shoes thing is, either. You have to experiment, though. Many people rely on Dankso brand, but they didn't work for me. Kalso Earth Shoes, however, have saved me from so much inner thigh pain. See what works for you, but please, stay away from the cheesy, trendy, discount brands. Save up for a good pair of shoes, rather than going through five pairs of $20 sneakers that destroy your muscles and ligaments.

    Another important thing is undergarments. If your bra isn't right, then you will be miserable. I stay away from underwire because it always seems to jab into me right at some trigger points I have under my arms. Buy good bras, don't scrimp. Your girls need support that doesn't dig into your shoulders or pinch your back muscles.
  • @summerdawn Hi! I, too, suffer bouts of crushing fatigue. I find that pushing myself and "faking it until I make it" can often work. Also listening to happy, quick-paced music helps. I still get really bad around November through mid-January, though. Having a good sleep routine is very beneficial. Sometimes you need to figure out when you get your deepest sleep and work around that schedule. I get my best sleep between 4am and 11am, so I do my best to allow myself to sleep those hours. During the day, I often rely on caffeine to see me through my rough spots, but I am careful not to imbibe after 4pm. Good luck to you. I know how frustrating it is to lie in bed with all these awesome projects going through your head and not even having the strength to go to the bathroom.
  • @sewsewlong the animal connection is wonderful! I have a Boston Terrier and a cat. They are both "special needs" and we've found a wonderful way to live in spite of "Daddy" (hubby!)
  • @Piper Good for you! unfortunately I DO work full time counselling victims of crimes and it is draining emotionally. I can expect to have a flare when its extra stressful, but in reading everyone's posts I think I'm managing! I've never had anything to compare to and this is helpful. I'm involved with my church and teach at Sunday School and other spiritual activities. My home is my sanctuary and its hard to invite people over to dinner or anything because it takes so much energy! thanks for your post-very encouraging.
  • @Shawn
    I bought a new mattress, then I bought the best thing I've found to add to the mattress. It's a pregnancy pillow. They come in different sizes but I went for the U shaped one, and you always have support it's amazing. I've also bought a Teeter (for those of you that haven't seen it) it's a thing you lock your feet in and turn upside down it stretches out your back and its great for me because my lower back after about 20 minutes of bending gets sharp pains and one tip back it stretches and I hear that pop that's music to my ears and instant relief. To get moving in the morning we invested in an elliptical, I use it in 10 minute sessions several times a day. I use a tens unit and asper cream, and hot baths. So far that's helping a great deal. Now to get the hot tub or move from Indiana to Florida to ease these winter pains. I don't have all the answers but I'm going to try every way possible to help relieve my pain besides being put on more drugs. So far every one they have tried me on I have had adverse reactions to, not looking to become a Pharmacy. I refuse to be put on Lyrica, those side effects are crazy! Hope this helps someone and you can find those pillows on Amazon for around 40 to 50 dollars
    We are looking into just cutting our foam cover in half (or whatever you call it- the topper thing that has a foam memory). My husband loves it and I don't. So that's our project for today! I like the variety of "tools" you use! I'm on Gabapentin to sleep at night and cymbals. I've been taking a good probiotic, adrenal herbs and fish oil, turmeric and Vitamin D the last few weeks and have been feeling great!We have a hot tub and I never make the time to go in it in the a.m. I think I will try it.
  • @thisisme93 I can so relate- I slept in a chair for about 6 years and when my marriage began to have problems, I had to get back into the bed to sleep. Turns out it wasn't the bed! I just couldn't sleep. My dr (after 15+ years of trying various things) finally put me on (or I should say I finally agreed to be put on ) Gabapentin at night and I have finally slept well for 5-6hours at a stretch! Cymbalta is also helping me. I've done numerous herbs over the years, too.
  • I bought tommy copper body wear the complete stuff, leggings, t shirt, gloves, socks, everything, it is a light compression wear and it has helped so much with pain, it warms and eases the pain after about 2 hours of wearing them the initial investment is kinda high but oh my was it worth it, I am on so many drugs I needed to try something different. I was diagnosed with this awful crap in 1985 and have been thru hell with it, as we all have, I am so frustrated with the medical community that doesn't see our pain as real. Giving us psych drugs do not address our issues, I know my fibro was caused by domestic abuse, my stepmother beat me as a child all over me with brooms, skillets, whatever she could get her hands on, there was damage done to the nerve and muscle fibers, then my husband took over where she left off, these reasons are often overlooked by the medical community as causes, fibromyalgia is a vicious disease, and I am at the point where I don't even like telling a new doctor I have it because it seems as if they put you in a I don't believe you category, or something like that, I mean it is getting better but you are still looked at like you are doctor shopping
  • edited February 2015
    My favorite Fibro Fix is a medium-sized spiral notebook I picked up for $3. I use it to keep important information close at hand, I take notes during doctor's visits (as well as writing down questions to ask the doctor), make short to-do lists, etc.
    Basically it's an analog version of my brain. I use sticky tabs to mark important pages. Sure, sometimes I use my laptop, tablet or phone as a portable brain, but they're often as cluttered & difficult to retrieve info from as my organic brain (digital fog).
    It's a handy helper for anyone who makes lists on the back of envelopes & other scrap paper (my husband, for instance) but a definite must-have for those of us plagued by Fibro Fog.
  • Because I take so many meds--pain pills & muscle relaxers in particular--I suffer from chronic constipation. I didn't like taking even gentle laxatives as they cause me to cramp.
    My doctor recommended Miralax (I use cheaper generics) which I take everyday in juice. It's not habit-forming, doesn't have a taste & doesnt thicken the juice.
    I just discovered another constipation reliever: the Squatty Potty. It's a stool you put in front of your toilet that lowers your heels & places you in a comfortable "squatting" position, which is the natural position for humans to void. This position keeps the pelvic floor muscle away from your colon so the lower portion of your colon can be voided without your having to strain (which can give you hemorrhoids).
    These two items, plus a diet high in fiber, have been a boon to my bum!
  • A glass of wine in the evenings.....especially if still in agony after a really bad day. I know we shouldn't drink alcohol with our meds but sometimes, needs really must rule. This small amount helps me relax and the meds work slightly better and so I'm in less pain. Win, win all around :)
  • I have CFS but a dear late friend of mine had Fibro and we found our symptom sets very similar, we used to call in Symptom Snap :) Thank you for this article, some things I knew like the compression bandages, some I do but didn't think of a being relief providing like shoes. Sometimes it's also good to remind yourself that you're not alone especially when your condition restricts you socially so THANK YOU for that too
  • If you have issues with being hot all the time do not get a memory foam mattress. It retains heat and makes you sweat even more. I have great bed that feels like I am floating, my daughter and sister also have FM and we each have different mattresses. Also, heated pool for at least 1 1/2 hours daily makes a big difference. During the time I am in the pool I almost feel normal again, but it is a great way to exercise even if you just walk in the pool.
  • I thought excersize makes the condition worst ? I read this on my research, it does for me I can't dance at party's I have to sit it out as the next day I can't walk , if I walk around the shops for a few hours I suffer so excersize is not my friend. I've had it since I was 28 I'm now 61 its ruined my life.
  • @bunnycherry Hey bunny cherry, I also have the same problem. They keep saying excersise but it puts me down for two days if I try. It is so depressing to think about how much pain you will be in before you do it!
  • I have suffered with this crap since 2004 and it seems to get worse each year! I have developed food allergies and have to carry Benadryl with me! I was only a social drinker but now I can't even drink a sip because it causes a flair within the first couple of sips. Has anyone else had this happen? I have had to quit work and in the process of fighting disability. Which I am losing and don't think I will get! I am so depressed and tired of being a burden on my family!
  • Nanatiny i have gone thru the same thing and have fought for my disability for many years till i can no longer fight for it. They dont acknowledge fibromyalgia as a disability if you can work even 1 day a week. Its very frustrating. I worked for over 30 years and was told that i need to lose weight ( im not that heavy) and i would feel better. I pray that you get the disability you deserve. Ican no longer drink also when i do it takes 1 drink and im down for the count and when i wake the next morning im in terrible pain. My pain meds dont even help me then, so i no longer drink its better that way for me. I also have food allergies but i had them before my diagnosis so i either had fibromyalgia then and undiagnosed , but i also carry benidryl with me too.
  • @gritsgurl i know just what you mean. I was also abused as a child and as an adult but never associated my fibromyalgia with the abuse. I do have a shrink and a councillor but all that helps with is the mental stuff from the years of abuse, it sure doesnt help with the fibromyalgia pain.
  • a great but inexpensive tool for fibro pain that i have found is a simple rice pack for my neck and shoulders. I heat it for a minute, and it provides instant relief and the pack stays warm for a while.
  • @summerdawn I know it has been a while since you posted this. If you got any help on replays I would appreciate any help. The suffering never goes away.
  • MeleyMeley Member
    I received a heated mattress pad for Christmas! It was the best gift ever. Also splurge with an hour body massage at least once a month if you can. Also keep a check on your vitamin D. Mine is also low, I have to take 50,000 units a week. Also take B-12. Where can I find the arthritis gloves ?
  • While staying warm is extremely important, I have found that electrically heated items(blankets or throws), cause an increase in pain. I don't understand why, but the electricity seems to have a detrimental effect. To get around this, I use two(or more if you're really cold), thin layers of blankets. I'm also bothered by covers that are heavy because of the sensitivity of my legs.
  • Thank you sooo much for these tips! I was diagnosed 6 months ago, so I am glad for tips on making life a little more comfortable.
  • Pain pills don't help my pain. Several people ( including my mother) have suggested trying marajuana! Has anyone else tried this? And does it help the pain or just make you high??
  • @bunnycherry I'm with you on that! I was seeing a personal trainer 3 times a week when my FM started to get bad I had to stop working out all together and haven't been able to do anything physical accept the mere trip to the grocery store ( when I can) THAT'S my big day out! Sad but true.
  • @swimmerjackie I totally agree with you!! My little Lilly is laying right here next to me ( as always). I'd be lost without her. She's my best friend and always knows when my pain levels become intolerable! She doesn't mind when I cry to her or complain about this horrible infliction. I try to keep a fake face on for everyone else but she knows better and has been an amazing support for me
  • Kryste asked about marijuana and I wanted her to know that it absolutely helps!!!! In fourteen years my doctors have tried me on EVERY pain pill available but none have been useful! I tried marijuana and it was a freakin miracle! Take my word:if it was not helpful I would NOT recommend something that is illegal (especially over a social media site)!!! It's not just for nausea! It relieves the migraines for starters! And it relaxes the pain tremendously!!! You will be amazed how much it works!!!!!!!
  • @Kryste see my other comment! Sorry I didn't see the reply button until now!!!!!!
  • paigepaige Member
    I agree about cold making the pain worse.I used a heated mattress cover I bought for most of the winter but what I found most frustrating was my night sweats.Yes, I'm 46 & already through menopause by about 4 years.But I found if I kept a fan on low blowing on me during the night,I stayed under the covers and got better sleep. I also take a mild muscle relaxer , melatonin, and boswella & a calcium supplement with magnesium all as my night time regimine to calm every thing down.

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