Best products from r/Fibromyalgia

Hi! Sorry about your diagnosis but glad that you now have a direction to focus on.

You've hit on two of the biggest helps!

-Cannabis... It works well for most people.

-Exercise... It can be tricky but I find it's best to keep a consistent schedule. Start easy, and gradually work your way up. If you're flaring because of it, you are increasing your workload too fast. Everyone's different in this, but I find swimming/water aerobics to be the easiest, followed by yoga, walking, elliptical, weight training, and lastly running.

-Books: The Fibro Manual is probably the best.

-Medications: There are only a handful of Rx meds that are approved for fibro. The primary ones are Cymbalta and Lyrica. Both are infamous for having nasty side effects. I strongly recommend reading up heavily on them before you test them out.

-Sleep. Make sure you get good sleep. Try to go to bed at the same time every day. If you wake up often, maybe try out a mask and earplugs.

-Supplements that may be worth looking into/trying, Vitamin D, Curcumin, & Fish oil.

-Diets... Some say they have better luck with less processed food in their diets. For me, high protein intake makes a difference.

Best of luck and hope you have a great day! If you ever want to chat with fellow fibro peeps, stop by and say hi in discord!

-Diagnosed officially about a year ago at Mayo.

-More than likely spurred on by chronic migraines since age 7.

Fibro is really tough because patients often have a ridiculous number of symptoms, many of which are debilitating by themselves. For me those are (fatigue, nausea, mild insomnia, allergies, widespread pain, migraines, brain fog, light sensitivity, sound sensitivity, tinnitus, visual snow, depression, anxiety).

Medications that I've tried for fibro since diagnosis:

-Cannabis: Mostly helps with the nausea, which for me was probably the most debilitating symptom. I was regularly dry heaving and throwing up if I moved at all. If you are able to recommend it legally, I would strongly recommend telling patients to get a vaporizer(I personally use a volcano at home and a firefly 2 for travel). They are more efficient and don't harm your lungs as long as you don't crank up the heat settings. I don't really see much difference between sativa versus indica personally. As far as pain management goes, it's pretty laughable...but it does help a tad.

CBD: I've only been able to extensively try one which was underwhelming but mildly effective for pain management. Others, have had better results.

Zofran: Helpful but still wasn't able to do much on it.

Cymbalta(tried up to 120mg, settled at 90mg): Definitely helped my muscles feel less achy. My mood would swing way way too much on it so I decided to stop as suicidal thoughts were becoming the norm on it. Withdrawal was also a nightmare even with gradual tapering.

Fioricet w/codeine: I was originally taking this for migraines and stopped a few months back as I tried to replace it with midrin. I only took it once or twice a week at most but it was incredibly helpful for fibro symptoms. I'm not sure if it was the codeine or the barbiturates. It may still have been the right call to end it but it has definitely cut into how active I am.

Quell Device: This one has been one of the most surprising for me. It's far from perfect but it has helped. It's great for those days where I can't do much. I strap it on, push the button and I kinda forget about it until I notice that I'm being more active.

Sleep: I'm still trying to figure this one out. I've bought a new mattress. I use ear plugs and a mask to try to limit stimuli. I cover up all LEDs in my room. I try to follow good sleep hygiene practices. My sleep has gotten better but it's still far from normal. I wake up too often and still have trouble getting to bed. Melatonin has also helped a tad. Cutting out naps was a big win for me as well.

Some of the biggest changes I've had were from lifestyle changes:

-limiting stress as much as possible

-Maintain or get social connections(anxiety and depression)...you need to get out and keep involved.

-Daily stretching, yoga, or moderate exercise

-meditation

-myofascial release massage: I believe it has helped me but I'm not sure if it is worth the price of admission given it's not covered.

-fish oil: I can't say one way or another to be honest. I keep trying it on and off to see if it's helping.

-distractions: To this day I do not know of a better way to beat chronic pain than to distract oneself...Find a good tv show, movie, video game, audio book, book, whatever and indulge a bit.

Best book I've read on fibro is: https://www.amazon.com/FibroManual-Complete-Fibromyalgia-Treatment-Doctor/dp/110196720X/ref=sr_1_3?ie=UTF8&qid=1473122123&sr=8-3&keywords=fibromyalgia

Highly recommended as it is pretty up to date and seemed to accurately relay a lot of my feelings as a fellow sufferer.

Thanks for taking the time and effort to ask sufferers and try to help. You're a good human being. :) I think most sufferers feel for the physician in the room as there is no good answer. I think it's a really tough situation for all parties involved(doctors, patients, family and friends). I hope more people like you take interest and maybe we can figure out some ways of limiting the suffering caused it.

That is wonderful how much you want to help and support her; she will definitely appreciate it.

These are what I use:

Blanket: https://smile.amazon.com/gp/product/B008BF2392/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Mattress Topper: https://smile.amazon.com/gp/product/B07G72DN63/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

What is nice about that mattress topper is it has 2 zones so you can heat one side of bed without having to heat other side. The mattress topper is also great at soothing all-over body aches since you're laying on top of it; feels amazing to crawl into after a long day.

There's also a really good book about Fibro, written by a doctor who has the disease herself. It's laid out in easy to understand language and includes both conventional and alternative treatment methods. The book is a must-read for sufferers, their loved ones, and even their health care providers. My review of this book would be: Before reading the book, I was genuinely ready to kill myself because I felt it was hopeless to try and cope with this disease for another 50+ years. Reading her book I've been able to find ways to improve my circumstances and now feel motivated to fight the disease as several of her methods have already made a huge difference in my life. https://smile.amazon.com/FibroManual-Complete-Fibromyalgia-Treatment-Doctor/dp/110196720X/ref=sr_1_1?crid=GYD3ZCYHN0PS&keywords=the+fibro+manual+by+ginevra+liptan&qid=1569526359&s=gateway&sprefix=the+fibro+ma%2Caps%2C134&sr=8-1

http://www.amazon.com/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238

Using the amazon link because it's detailed--you can likely find this at your library. It's pretty helpful in that it looks at both of those conditions, really explains what therapies work for each. There are some great workbook pages in here to help you communicate effectively with your medical providers. I bought my own copy after my therapist loaned me hers.

I'd recommend checking it out from a library, and giving it a read. It may serve as a good starting point to developing coping mechanisms.

Good luck and best wishes.

I am all about the memory foam! Memory foam mattress pad, memory foam body pillow, multiple memory foam pillows for my head. . . I like them because other than the body pillow which is pretty firm, they basically become as firm or soft as you need them. This is my favorite pillow ever (I guess technically it is shredded bamboo, not memory foam) and I use it on top of a memory foam wedge pillow like for acid reflux. And this is the memory foam topper I've been using for 3 years now, it still feels wonderful. It also does not sleep hot like some memory foam toppers.

On top of good pillows, I also found I had to adjust my bedding. I use Pure Beech jersey knit sheets from Bed, Bath, and Beyond, which are soft but not too warm. And while I love my down alternative comforter, it is much too warm for me now, so instead I use a fuzzy fleece blanket from Target as my main blanket. Then I fold the comforter in half at the foot of the bed so it covers my feet. That way, my feet stay warm (they're always cold) but the rest of me is just warm enough without overheating.

> My rheumatologist doesn't seem very well-versed in fibro

Welcome to the club. I'm in southern California and I'd love to find a good rheumatologist too. So far I've seen 4 of them, including 1 in an academic setting, and all of them are either woefully uneducated about fibromyalgia and/or are unwilling to treat it. For instance, one of them was unaware of the 2010 ACR criteria. Another one was very thorough, did a bunch of extra testing, and seemed good until I asked about the FM/a test. I know that it has a bad reputation, but she was totally unaware that it even exists. Another reum. doc, who I thought was the best overall, is unwilling to treat fibromyalgia because "it's not an inflammatory disease." It seems like rheumatologists don't like fibromyalgia because it's the only rheumatological condition that doesn't have a specific, well-regarded, and reliable test.

You might also consider a neurologist or pain management specialist. I've had fairly good luck with the neurologist, especially because he's able to do EMG and nerve conduction to help rule out some stuff and describe my condition. Pain management people are supposed to know about fibro. Mine is shit, but at least they are more willing to push medications like high-dose Lyrica.

One long shot and I can't personally recommend her is Ginevra Liptan who runs this:

http://www.fridacenter.com/drliptan/

Here's her book:

https://www.amazon.com/FibroManual-Complete-Fibromyalgia-Treatment-Doctor/dp/110196720X/

Her approach is a bit too out there for me, but may work if I get desperate enough.

In any case, I hope you find some relief. Good luck.

You might be interested in the book [The Fibro Manual](
https://smile.amazon.com/FibroManual-Complete-Fibromyalgia-Treatment-Doctor/dp/110196720X/ref=sr_1_1?ie=UTF8&qid=1517839795&sr=8-1&keywords=fibro+manual) by Ginevra Liptan. She is a doctor who specializes in fibromyalgia as well as having it herself. I thought the descriptions about what it feels like to have fibro were pretty spot on and it offers a lot of suggestions and products you can try. I found several things in the book that really helped me.

Some things to try: keeping warm, gentle stretches, magnesium spray, foam rolling, gentle massage, myofascial release, drink plenty of water, Epsom salt in the bath, a visit to a float tank, improving sleep, experimenting with diet changes like eliminating caffeine, gluten, dairy, or plants from the nightshade family.

Just keep searching and reading this sub. You will find a lot of suggestions on stuff that has helped someone or another. We just give everything a shot and see what sticks!

Good luck to you and your mother.

I have one of those pillows with the cooling gel which helps me a lot
https://www.amazon.com/Classic-Brands-Reversible-Memory-Standard/dp/B00MGLOX40/ref=sr_1_7?s=bedbath&ie=UTF8&qid=1497840698&sr=1-7&keywords=cooling+pillow

 

The heat totally does me in too.

 

Also, I tend to run cold water over my wrists (underside, where you can see the veins) or hold an ice cube between my wrists for a few seconds or as long as I can. It really helps even though for some it's just an old wives tale. Also putting a cold cloth on the back of your neck, groin area, and on top of your head is supposed to help.

 

If you can Percale sheets tend to stay cooler longer, they tend to be a bit expensive (around $60US) but I've had mine for 5+ years and they are still my favorite sheets https://www.amazon.com/Perfect-Percale-Egyptian-Cotton-Comfortable/dp/B01LMDQ994

 

A strong (8000btu) window a.c. unit is helpful too, and sometimes you can find them on Craigslist.

 

I hope you find some relief

First of all, I feel you. I'm in the same boat having depression, anxiety, and fibro. It sucks. And it's a vicious cycle because they all make each other worse. The unfortunate thing is, we have to push ourselves to move forward because otherwise, you'll just be miserable and so will your husband.

>I'm mad because he blames me for all these symptoms of depression that I feel like he should have picked up on and asked if I was ok, instead of pushing me away and treating me like crap.

Is he pushing you away though or is it the depressed brain telling you he is? It's not his fault he can't tell you're depressed. Most people don't know what depression actually looks like.

>Anything you guys suggest in the meantime before I find a therapist/psychiatrist?

Read this book and this book..

The first book is great and gives lots of tips to naturally help your life improve through depression. I take meds but this helped supplement them.

The second book helped me learn more about my brain and the brains of those around me and now I better deal with other people's issues and am more comfortable dealing with stressful situations.

There's also different ways people show affection. I tend to buy things or give gifts. My husband is more physically emotional. Therefore, he needs to cuddle and be shown affection in physical ways.

There are activities you that are stationary but also can include your husband. My husband and I play tabletop games together, for example.

>I sit and do nothing because at least it turns off my brain from all the thoughts of horrible things I wish would happen.

This doesn't make sense to me. Typically, rumination happens more when you're inactive.

I suggest you start becoming more active, even if it means going for a 10 minute walk as it's going to help not only your brain but also your body. You should also be eating well as it will help with your pain, even just a little. Eating well is different for each person. I for one, cannot digest meat or sugar well whereas someone else may not be able to eat fibrous foods.

I have moderate joint hypermobility and fibromialgia. My joints sometimes partially dislocate after doing absolutely nothing to them, (usually my shoulders, ankles, and knees) but I think it's because I am letting the limb hang loosely.

For example, I was having breakfast with some friends with my legs crossed, left on top. When I stood up to leave, I nearly fell down because my left knee had come partially out of socket. I had to limp around and try to get it back into place. When it popped back in 30 min later it was fine, other than some residual soreness.

I suffered a grade 2 sprain a month ago, and I've found that letting my foot hang loosely for a while is enough to cause serious pain upon moving it again.

You might want to use an ankle brace (or one for each side) for the times when your ankles are feeling like this; it will stabilize and allow healing. This is the one I have for my sprained ankle, although I'd guess you could do something more lightweight that fits in shoes better. https://www.amazon.com/gp/product/B00TZTO0VM/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1

Definitely do ankle strengthening exercised as much as possible. Increasing strength and stability is really important.

Functional (big) pockets! Lined hoods, with that basketball short kind of fabric! (Just make us guy hoodies with good big pockets, the headphone slit, lined hood, warm, then make 'em cute too!) That nice, silky, heavy nylon kind of fabric for nightgowns, that used to be used all the time for more expensive brands. (It had "cot" in the name. Tricot or something?) Soft, wide band elastic for waists. (Yoga/harem style waisted pants) Fabric that doesn't pill, especially the warm fabrics! Waist closures that don't use nickel! (No nickel period!) Fabric that doesn't bunch! Full, soft skirts with gentle elastic waistbands of varying lengths! (Just make sure the elastic doesn't twist/bunch either!)

I mean these kind of yoga harem pants, without the tight ankles! But the waist is perfect! https://www.amazon.com/Fitglam-Pilates-Workout-Dancing-Trousers/dp/B01DLS9MTC/ref=sr_1_71_sspa?keywords=yoga+harem+pants&qid=1565032438&s=gateway&sr=8-71-spons&psc=1

​

https://www.amazon.com/HOEREV-Super-Modal-Spandex-Pilates/dp/B00HEHH7HG/ref=sr_1_7?keywords=yoga+harem+pants&qid=1565032330&s=gateway&sr=8-7

That's a really good point! I have both, but I'm not 100% clear on the difference either, to be honest (I should probably ask for clarification next time...). However, OP, you should definitely ask the doctor you like about myofascial pain syndrome. Also, take a look at the Trigger Point Workbook (Davies and Davies). It's totally harmless and may provide you with a lot of relief. It's been great for my enormous, rock-hard knots, and I was even able to help my husband with his neck pain.

http://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1608824942

unfortunately I had a great weighted blanket, seen here, but I couldn't use it for sleeping. it was fine if I was on my back but if I turned on either of my sides (which I do as soon as I fall asleep, without fail) it pressed me into the mattress so hard that it pushed the pressure points on the sides of my hips so hard into the mattress that it really hurt. I got it for christmas and used it for about two weeks before storing it. I actually sold it recently. so sad. it was the best until it was the worst!

I don't have a vibrating heating pad, but I do have a heated mattress pad, which is great. it's by sunbeam, and they have a great warranty. it didn't work one year and I shipped it back and they sent me a brand new one for $15, or maybe it was free? maybe that was just the cost to ship to them, I can't recall. https://www.amazon.com/Sunbeam-Quilted-Mattress-EasySet-Controllers/dp/B00FHW8QI4

i'll have to check out this ultimate bed business, thanks!

I understand constant headache and migraines for weeks. When you say nothing else works do you mean concerning medicine only? You said they are tension related and trust me, yoga is amazing for reducing pain. There are so many great yoga teachers on youtube just waiting to teach you how to reduce stress and pain. Yoga with Adriene is a great place to start if you don't have experience or need a bit of a refresher.

Obviously as many massages as possible will help and here's a little something that has changed my life: neck block
This can be used in myriad ways to reduce stress in neck, upper back and face. It's tempting to go cheap and just get the small part that sits atop the black stand but you will not gain the relief you need that way. It's worth the investment if you invest your time. Another miracle tool is the Body back Buddy find the right size for you and I promise you will never want to put the thing down. You can work on knots anywhere in your body that cause tension without a massage therapist's limited time.
Learn about Myofascial massage techniques, The Trigger Point Therapy Workbook is a God send. It even says right on the cover, the first type of main you can helps reduce yourself by learning these techniques is fibromyalgia. Chronic Myofascial Pain causes great pain in the face and head and this book teaches you how to fix this yourself. Help yourself and get these things if you can.
Another thing, when was your last eye exam? When I finally got glasses my migraines went from 5-8 times a month to 1-2 every couple of months. Didn't even realize I actually needed glasses.

Hopefully these things help! Having dealt with regular headaches and migraines since the age of six, these are really the only things that have changed me.

I've only recently kind of come to terms with it. I've been moderately health conscious my entire adult life, and I always looked at the slowly progressing symptoms as me missing something. I whole-heartedly believe that my symptoms aren't as severe as they could be because of dietary and supplemental steps I've taken. This book has been incredibly eye-opening; it's a wealth of knowledge and I'm taking most of the things recommended. I've been able to pinpoint some key foods (gluten, eggs, potatoes) that significantly increase my pain and eliminated them, so I'm definitely convinced that diet plays a key role here. I haven't dropped the money on getting food intolerance testing done, but I think that may happen soon.

All that to say, that I've finally accepted that yes, this is medically called fibromyalgia, but I'm not convinced that conventional medicine is the only answer. I still believe there is an underlying issue causing all of these symptoms. I'm going to do everything I can to make myself feel better, and to hopefully keep this from getting worse. I know how absolutely terrible it can become, and that is my motivation to keep searching for a better solution. Don't give up!

I asked a question on this sub and found a support device that allows me to have better quality of life. Ear plugs that let sound through but block stressful background noise. These work great for going to the movie theater, out to loud restaurants, and concerts. Definitely not depressing or worthless to me.

Maybe you could add more fun subs to your mix? I recommend r/AnimalTextGifs to start.

A good book for you and your husband. You, because you can relieve some of your fibro symptoms yourself, at home, and the husband because it will help him to better understand what you're living with. https://smile.amazon.com/FibroManual-Complete-Fibromyalgia-Treatment-Doctor/dp/110196720X/ref=sr_1_1?ie=UTF8&qid=1468210274&sr=8-1&keywords=ginevra+liptan

Fibro is definitely a neurological condition. It can manifest in the form of inflammation, but that's definitely not the cause. Check out the Fibro Manual, I think you'll find it more helpful: The Fibro Manual

I use a memory foam and gel pillow made by Sharper Image, I can’t seem to find it, however, it’s generic enough to be copied exactly.

On top of fibro, I’ve had insomnia for nearly 30 years. This pillow gave me some of the best sleep I’ve EVER had.

One of my friends swears by these earplugs for hearing conversations while cutting background noise. Etymotic ETY-Plugs High Fidelity Earplugs, Standard Fit, Frost Tip https://www.amazon.com/dp/B0015WJQ7A/ref=cm_sw_r_cp_apa_cVVVAbJK9Z6JY

https://www.amazon.com/dp/110196720X/ref=cm_sw_r_other_apa_R7m8BbMM0GTQ0

Now it's not all that and a bag of chips and some of it is just hokey, BUT there is a lot of useful stuff in it.