(Part 2) Best products from r/Fibromyalgia

Using a throwaway for this. I work in the festival industry and have fibromyalgia along with other non-visible chronic illnesses.

Festivals are challenging for us for a number of reasons:

• not many places to rest, being on your feet for long days
  
• long lines for bathroom facilities that are usually also gross
  
• schedule is usually packed, sense of FOMO if you arrive late/leave early. Hard to find friends that are on the same wavelength.
  
• food that leads to tummy trouble and other naughty drinks/substances!
  
  Despite that, I still attend several a year and obviously work many too. Here are my tips:
  
  
• bring a flipstick or portable seat. Huge crowds aren't very sympathetic to those who need personal space unless there is a visible marker of disability.
  
• try to walk around the site before it gets crowded. I know this is more physical activity which might make you tired... but it can also reveal shortcuts, quiet spaces, less used washrooms, and other places you will gratefully use over the next few days.
  
• If there's an accessibility tent, introduce yourself and ask for tips. You don't have to disclose your actual disability but you can ask questions like, "In your opinion, where should I go if I need to sit in a quiet place? Is there a seating area near each stage? What should I do if I'm having a medical issue?"
  
• ask a festival staffer, security guard, volunteer, medic, or anyone with a radio for help if you need it. Don't be shy. It is their job to ensure public safety and even if the first person can't help directly, they are responsible for finding you someone who can.
  
• don't get trapped in the crowd, accept that being on the outskirts will help you leave if needed and also have fewer instances for people to thoughtlessly shove or step on you. The pit is a high-contact zone and not safe for us. I see older people, families with children, etc make this mistake all the time and it is frustrating for all involved.
  
• rent a locker. Cannot stress this enough. You can have comforts like toilet paper, sunscreen, raincoat, phone charger etc. nearby without having to trek all the way back to the campsite. Keep your bag light with just the essentials - earplugs, bandaids, phone, cash, etc.
  
• bring AND WEAR earplugs. This has made a huge difference for me. It not only eliminates headaches from the PA system but reduces the level of insanity when people are bouncing around and screaming.
  
• don't drink alcohol, it will also hit you like a ton of bricks after a day of being active and likely low water consumption. This also goes for drugs that you have not been prescribed.
  
• pay close attention to security rules regarding prescription drugs, liquids, etc, and follow them to the rule. I almost had my painkillers confiscated once which would have made for an awful day. Bring copies of prescriptions, be honest, etc.
  
• if you're going with a group, you kind of have to also be comfortable with being independent. Groups are fickle and there will be a lot of changing plans, hurt feelings, drama, etc. If you're wiped out, just say you need a break and plan to meet up with them later. Don't get stressed or freak out at not being able to please everyone. Obviously if you have a friend who can travel with you it's safer and better, keep in mind that doesn't always happen especially if people are intoxicated.
  
• keep your phone charged in case you have to break with the group or need assistance. Don't waste phone battery on social media.
  
• Prioritize, prioritize, prioritize. I've regretted showing up too early in the day because I was exhausted by the time the headlining act came onstage. Check out the lineup before you get to the festival and pick your must-sees. Plan to leave a little bit early before the huge rush. Factor in travel time between stages! If you miss part of a set or a couple of acts, so what, you're doing the best you can. There is literally no act in the world that is worth trashing your health for.
  
• festival food is soooo tempting but it can end you. Keep meals light and snacks healthy - try to eat as normally as you would at home with more protein and fats to make up for being active all day.
  
• recovery days! Plan to be a zombie for a day or two afterward, if you can take time off work do it, if not, take it easy in other ways.
  
  I hope this helps! Ultimately, I want you to feel like you are in control, not your disease. It's tougher for us than others but it can be possible to enjoy festival life despite fibro. Take care!
  
  

Epsom salt (magnesium sulfate) baths are the best if you have a bathtub. Bonus points if you have a bathtub big enough to soak your whole body. I just lie down with my legs criss-criss applesauced. There are magnesium lotions like this https://www.amazon.com/Magnesium-Lotion-Health-Products-Liquid/dp/B00K5QUAIG/ref=sr_1_2_a_it?ie=UTF8&qid=1493388568&sr=8-2&keywords=magnesium+lotion (sorry idk how to link on here) I've been wanting to try the lotion bc it's more economical than a bath, and more practical bc not everyone has the time/energy/luxury of being able to take a bath.
I also take magnesium citrate supplements to help with soreness and it seems to be reducing some of my pain. I started at 100 mg, but my pcp had me increase to 400 mg to help w migraines(which is 100% of the recommended daily intake)
If you get migraines, I recommend getting the strap-on freezable eye masks and keeping two in the freezer. I strap one on to my forehead, and when I'm too cold there, I flip it around to the base of my skull. And if I need more cold, I always have a spare in the freezer to replace the melted one.
Warm showers are nice when you have the energy to stand. If you don't, I used to keep a stool by the shower so I could sit and still be able to take hot showers with minimal energy.
If you want med recs, I'm on cymbalta and gabapentin. I recommend combining gabapentin with an antidepressant for long term use, and I use an NSAID (nabumetone, but ibuprofen and aspirin can work), analgesic (acetaminophen,) and caffeine combo to help as necessary. Also, don't be afraid to ask for tramadol! Sometimes there are really bad days that warrant the use of it. You just have to be careful w mixing it w alcohol and certain other meds.
I've heard weighted blankets can help a lot with pain, and have the added benefit of easing anxiety. They're quite pricey, but on etsy you can have one custom made for much cheaper than retail price. You can also make one yourself or have a friend that's into sewing make it for you. Estimated price for materials is 30-50 dollars if I remember correctly. Retail price on amazon is 200-300 dollars, and etsy prices are less than 200 depending on what weight you get.
Heated blankets are good too! They're like a heating pad for your whole body. If you live in hot places like california tho they're not always practical, but they're handy in the winter.
Invest in a good, quality mattress topper! They're relatively cheap. Never underestimate the power of a good night's sleep. Same thing goes for pillows - look for a good one for your sleeping style. Ikea has cheap ones that you can test out in store.
I'll edit as I remember more stuff.

Hello! I added a supplement to my life for brain fog after I had a friend introduce me to nootropics ( /r/nootropics ). My friend suggested that I try piracetam with a CDP choline supplement, as -racetams often improve cognitive function but deplete choline, which can cause headaches and other side effects if you don't also supplement choline.

So I started with both, but honestly dropped the piracetam after not too long. I did like it and it helped me to wake up and focus when taken with the choline, but it's also a bit more high-risk and you have to be careful when combining with other drugs (though as evidenced in /r/nootropics, people use -racetams frequently without issue). I just felt that it wasn't necessary for my needs, but I'm sure that subreddit could help if you wanted to try to add it in as a cognitive enhancer, OR they could potentially help you find different enhancers that work for you. I just want to take a second though to emphasize that nootropics can be a bit of a rabbit hole and that you should make sure to thoroughly research anything before trying, especially to make sure it won't interact with something else you take.

However, the choline I was taking alongside the piracetam also has positive effects on its own and has been demonstrated to increase verbal fluency and visual memory (https://www.ncbi.nlm.nih.gov/m/pubmed/11190987/). I decided to continue taking the choline, and I swear that it helps to clear some of the mental fog. My word recall is much better when I take choline, and noticeably returns to my lower baseline if I forget the choline for a few days. I take one of these a day: https://www.amazon.com/gp/aw/d/B071KRRMTX/ref=oh_aui_i_d_old_o0_img?ie=UTF8&psc=1 and I would also like to add that there are many different forms of choline, though CDP choline was the form recommended to me.

Good luck!!!

OMG I have a heated mattress pad that I love. THE. WHOLE. BED. My husband got it as a gift for me after all that twisting around to stay on the warm. It has two sides so he doesn't have to be as hot as me. I turn it all the way up when I take a shower before bed, then turn it back down after I get into my nice warm soft bed. Did I mention I LOVE it. I mean it has made my world a better place and it is the best gift he ever got me. https://smile.amazon.com/gp/product/B00N2OD59Y/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 It is soft and fuzzy, you don't feel wires at all, it makes my whole bed toasty and warm and when I sink into bed the mattress is all toasty and my blankets are warm too and it's lovely!

Not sure if you’d be interested in something like this, but I have a hip/thigh bag that I absolutely LOVE. I hate carrying purses and bags because they’re inconvenient and I want my hands free, and crossbody bags or backpacks hurt my shoulders/neck/back. I have this hip bag from Amazon and it is my favorite thing! I get compliments on it every single time I wear it. I call it my “post apocalypse purse” lol. Again, not sure if something like this would be your style, but I figured I’d throw it out there just in case.

https://www.amazon.com/Anjoy-Outdoor-Motorcycle-Costume-Pouches/dp/B07BZF3HP1/ref=mp_s_a_1_1_sspa?keywords=thigh+bag&pd_rd_r=b7173f9c-2f60-44db-b1e1-f696bf36fd41&pd_rd_w=qOZfs&pd_rd_wg=jhBgc&pf_rd_p=801e52f8-2f92-4121-a10a-a677634e995d&pf_rd_r=S9BP2XSAD8PWSD7X3ADD&qid=1566610686&s=gateway&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzMUtYODJSTlBFOVFJJmVuY3J5cHRlZElkPUEwNjk0NTYzMlFCVlpCRFNXUUFJWiZlbmNyeXB0ZWRBZElkPUEwMzkwNTgyMjhKMkxMWEFKWjA2MCZ3aWRnZXROYW1lPXNwX3Bob25lX3NlYXJjaF9hdGYmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl

Pre-take/pack meds before you get sore, and take them when you feel a wave of pain coming on. It’s easier to treat before than when you’re full blown flaring, and there’s research to back this up. Personally I like Tylenol and Advil, but naproxen, cyclobenzaprine or methocarbamol has helped before too depending on the day.

I have sometimes taken my heating pad with me if I’m going to be somewhere near an electrical outlet like a friends house or a library, but Robax also makes these for back, neck and menstrual pain if you need a portable variety. I got mine from the pharmacy.

I also opt to take comfortable running shoes and my cane, but that’s a personal preference. Remember to stay hydrated as well, this will help prevent migraines if you get them. I also pack a scarf or a sweater in case I come into contact with strong perfume or cigarettes.

Please do! I have the TENS 7000 from Amazon. $30. Comes with a carry case and 8 pads. They're square, 2" by 2". I also bought rectangle pads 2" by 4" and a butterfly wing pad. Honestly I just play around with them via trial and error. The basic premise is to put one (or more) pads on either side of the area that hurts. Your current will run from one pad to the other. When you place them on either side of what hurts, the current will run across that muscle area. Now you'll have nerves in there also, so depending on where the pad is and how strong your device is set, you can stimulate muscle contractions. I like to freak my sister out by putting a pad on the top of my hand and on the top of my wrist, which stimulates the median and or ulnar nerves and causes my fingers to twitch around like a fish out of water. She hates it, haha. But basically, once you turn it on, you'll get a feel for what is being stimulated. I usually end up adjusting the location of the pads a couple of times. I generally start on a continuous mode and keep it at the surface for a while and once I've adjusted to it, then if the area is particularly bothering me, I'll go to a burst mode which will do more of the contraction style.

I started out with the TENS 7000 which is entirely manual, which is nice, if somewhat daunting. A couple weeks ago I picked up another device which has 15 preset modes. I don't like that I don't have entire control over it, however it's advantage is that the preset modes combine different types of stimulus which is cool.

Here is the TENS 7000 and the HealthmateForever Preset Modes

I've become a real fan of cold packs. For a much longer lasting effect, try the black ones from Chattanooga. They have a clay-like consistency when cold. They're much more durable than the drug store variety too.

https://www.amazon.com/Chattanooga-ColPac-Clinical-Grade-Urethane/dp/B00J4Z0610

The same company also makes these rubberized velcro straps that hold the cold packs in place perfectly, for maximum effect:

https://www.amazon.com/Nylatex-Wrap-Therapy-Chattanooga-Economy/dp/B00PO8CXY4

Also, if you don't mind the smell, Bengay cream can have a rapid cooling effect. It also amplifies the cooling sensation from fans.

And for a super handy fan, try this battery powered one. It can put out a surprising amount of air from such a small package:

https://www.amazon.com/gp/product/B00Y1VZ3RO/

I have as well, and to share what helps alleviate mine in case it can help someone else: TENS machine and compression massage. Not compression socks but something that "massages" legs through varied levels of compression.

I've linked below both the TENS unit and compression leg massager I use. Hopefully it can be helpful to others as well.
https://www.amazon.com/dp/B00NCRE4GO/ref=cm_sw_r_cp_apap_4js7JHJsUw6Z9
https://www.amazon.com/dp/B07QVL81JS/ref=cm_sw_r_cp_apa_i_y7puDbNVYVGRK

Ooo great idea! I’m gonna have to look at that post. Also your enthusiasm has inspired me to go ahead and get that shower seat, too! This is what I’m gonna get, cause it’s padded: https://www.amazon.com/dp/B06XXZQ4XS/ref=cm_sw_r_cp_api_i_f4YzDbH8PXEQW

Also look how cool this tub thing is!! https://www.amazon.com/dp/B0753972GG/ref=cm_sw_r_cp_api_i_Q4YzDbG5EQ8J2

The Fibromyalgia for Dummies book is actually quite useful. It helped me better understand. Understanding better means you can explain it better.

You might compare fibro to having the flu every day if you want a really short and sweet answer.

As you mentioned, there are indications of a hypothyroid condition even though she was tested and it came back normal. In an interview with Dr. David Derry http://www.thyroid-info.com/articles/david-derry.htm He states that based on his experience, he feels that Chronic Fatigue and Fibromyalgia are caused by low thyroid. He went on to write a book on breast cancer and Iodine: https://www.amazon.com/Breast-Cancer-Iodine-Prevent-Paperback/dp/B00QD9FDFY and this book actually touches quite a bit on Fibromyalgia symptoms.


It certainly is recommended to consult with an Iodine literate practitioner prior to starting. A list of them is here: http://www.breastcancerchoices.org/ipractitioners.html

My wife self administered the treatment, but only after doing a great deal of reading and she also benefits from being very analytical.

I got mine from serenity engineered. Here is the link to the exact one I got https://www.amazon.com/Weighted-Blanket-Removable-ZIPPER-SYSTEM/dp/B07BPBHWLG/ref=sr_1_1?crid=XRABFGY1Q72X&keywords=serenity+engineered&qid=1570417142&sprefix=serenity+en%2Caps%2C170&sr=8-1


If you order from Amazon I think they ship to Canada as well (not sure so you gotta check on that).
For your weight I think the 10-lb blanket is what is recommended based on the suggested 10% of body weight I had seen everywhere.
I picked this one because it had the 3 x 3 quilts so the weight is exceptionally distributed. It also comes with a zipper inside and outside to secure the blanket to its cover so there is virtually no movement inside the cover.

Blue Lotus Chai. It's very very strong! And a little goes a long ways. I think it's worth the price. https://www.amazon.com/Masala-Chai-Blue-Lotus-Gluten-Free/dp/B0049K99RW?th=1

http://www.amazon.com/Lifetime-HealthmateForever-Electrotherapy-Electronic-Management/dp/B00O7CM12W/ref=sr_1_2?ie=UTF8&qid=1450155928&sr=8-2&keywords=healthmateforever

This is my favorite one, long battery life, and good power, plus 8 hook ups

I got this one from Amazon. It has decent reviews and a lot of options. I've only used it a few times, but it was very nice.

If you want a better understanding of FMS, try to find a copy of this workbook. It's $25 new, but I got a near-mint copy on half.com for $4 including shipping. My wife said it's like reading a diary that she doesn't remember writing.

Amazon sells caftans! There's a company there, Goood Times that have some pretty ones! They are my warm weather go-to now! (And I've layered one over loose yoga pants and a soft loose cotton shirt of a color that blended in with the dress to wear for Thanksgiving too!) https://www.amazon.com/Goood-Times-Caftan-Dress-Paisley/dp/B01LYRTJQX/ref=sr_1_1?keywords=Good+Times+caftan&qid=1566879982&s=gateway&sr=8-1

You may also want to look into an adjustable bed frame too. I ordered one off amazon, queen, for like $700.


https://www.amazon.com/LUCID-L300-Adjustable-Bed-Base/dp/B074QWYM22

I would love that. I finally found a bra on there that doesn't make me crazy uncomfortable and and comes in BOT sizes. https://www.amazon.com/gp/product/B00A6SAVT6/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

Cool bag!

A hint for shorter URLs, you can delete everything after the question mark.

>https://www.amazon.com/Anjoy-Outdoor-Motorcycle-Costume-Pouches/dp/B07BZF3HP1/ref=mp_s_a_1_1_sspa

Yeah, it can be pretty painful - as my sister eloquently put it, "wow, your muscles are fucked up!" I've stopped asking her for help, because she either refuses to do anything or lectures me if I don't go to the gym on a near-daily basis to "help myself." My trigger points aren't as sensitive as yours, but a decent amount of pressure makes me see stars. I use this book and what I've learned from her to do myofascial release at home, and it really helps. The muscles in my neck used to get so tight that they would spasm and lock up, and I wouldn't be able to move my head for days. Using these techniques have kept it from happening for months, and it used to happen at least once a month.

https://www.amazon.com/gp/aw/d/B00O7CM12W/ref=ya_aw_oh_bia_dp?ie=UTF8&psc=1 I also have a portable tens unit called omron that I keep in my purse https://www.target.com/p/omron-electrotherapy-tens-pain-relief-device/-/A-14898718?ref=tgt_adv_XS000000&AFID=google_pla_df&CPNG=PLA_Health+Beauty+Shopping&adgroup=SC_Health+Beauty&LID=700000001170770pgs&network=g&device=m&location=9014904&gclid=EAIaIQobChMIuay_0Y7d1wIVULjACh1JDw9PEAQYAiABEgJvWfD_BwE&gclsrc=aw.ds

TENS 7000 2nd Edition Digital TENS Unit with Accessories https://www.amazon.com/dp/B00NCRE4GO/ref=cm_sw_r_cp_api_i_9JlLDbHVKGH26

This is the tens unit I have!

I find something like this helps a lot with my pain, however temporarily.

https://www.amazon.com/HealthmateForever-Electronic-Arthritis-Inflammation-No-USD723178S/dp/B00O7CM12W/ref=sr_1_10_a_it?ie=UTF8&qid=1479415617&sr=8-10&keywords=electric+shock

Also if you don’t have a tens unit already you should absolutely get one!!! My doctor says commercially available ones are safe to use (check with yours maybe anyway) and they are cheap!

This is the one I have
FDA cleared OTC HealthmateForever YK15AB TENS unit with 4 outputs, apply 8 pads at the same time, 15 modes Handheld Electrotherapy device | Electronic Pulse Massager for Electrotherapy Pain Management -- Pain Relief Therapy : Chosen by Sufferers of Tennis Elbow, Carpal Tunnel Syndrome, Arthritis, Bursitis, Tendonitis, Plantar Fasciitis, Sciatica, Back Pain, Fibromyalgia, Shin Splints, Neuropathy and other Inflammation Ailments Patent No. USD723178S https://www.amazon.com/dp/B00O7CM12W/ref=cm_sw_r_cp_api_i_B1wGDb2GF95KC

Does wonders for sciatica-like pain! There was a 2 week period there where I couldn't function without it.

Inconclusive about trigeminal nerve pain. It definitely triggered a migraine, but then I stopped having general trigeminal nerve pain. I don't know if it is related. I no longer have significant problem with that nerve since I used the TENS on it.

They are cheap enough that I recommend giving it a try for any pain you're struggling with.