YES! This is one of the weirder symptoms I get when I’m flared. It took me awhile to realize it was part of my fibro. It’s usually one of my first symptoms of a flare and I notice it most when I’m driving. When a car passes me that I didn’t notice in my rear view I’m startled by it. For me it gets better as my flare heals. I was recently introduced to EFT Tapping and that helps to calm down my system, also doing a short morning kundalini yoga session seems to help with my fibro and hot flashes (hello menopause, so nice of you to join fibromyalgia).
There are lots of EFT Tapping videos on YouTube, I like this one for healing and I like this guys channel: https://youtu.be/xYwRVp0HLaA
For kundalini I use a few DVDs from Ravianna, my favorite is Fat Free Yoga. I found them while doing research on exercise and fibro and now own several of their DVDs. https://www.amazon.com/Fat-Free-Yoga-Weight-MATRIX/dp/B000AY6JVK#aw-udpv3-customer-reviews_feature_div
First off, as recommended, check your lease for the rules on air conditioning. I've been in some that are very specific, and some that aren't. Window AC is usually banned because they ruin the look of a nice building, but sometimes if the building is paying utilities they may also have limits due to the power consumption of an AC unit.
I would also talk to your doctor, they may be able to provide a letter that says you need the AC for health reasons.
Finally, if you are using a window unit now, have you looked into a portable unit instead? My current apartment does not allow window units, but they don't limit portable AC because the window attachment for hoses is less obvious. While a portable unit is louder and less efficient than a window unit, a dual-hose model can still do a good job cooling down a room. Depending on what you find in your lease, you may be able to switch the bedroom to a portable unit now, and then save the window unit for the living room in June. I have this Whynter dual-hose portable AC which I use in my bedroom, the noise is less obnoxious than most portables and it works really well.
Sorry you're a member of this club too, but the community here is wonderful - the validation alone is lifesaving, and there are tons of people willing to discuss what's working, what's not, how their symptoms are presenting, what they're struggling with, what's going well, etc.
A recommendation: get your hands on a copy of this book by a Dr. Ginevra Liptan, a physician who was diagnosed with fibro while at a prestigious med school, couldn't get answers or treatment in any cohesive/quality way, and became a subject matter expert so she could help herself and others. (When I recommend her guidance, I always say that it doesn't bug me that she now sells products and supplements - no one's getting rich doing what she does, and there's nothing wrong with multiple passive income streams! Especially for... someone with fibro.) In addition to The FibroManual, she also wrote The Fibro Food Formula, if you're interested in exploring a nutrition based approach; even if you don't go to extremes, knowing what foods may be triggers is valuable.
Keep asking questions, advocating for yourself, and listening to your body and your instincts. You've found a great place for support and input.
I'm not even working anymore but I was working full time and it ended up that if I worked all day the next day I was in so much pain I couldn't get out of bed. I ended up missing more and more work and being less capable at work because I was always in pain and weak, and I worked in a kennel in an animal hospital. I needed to have my energy and strength and it was gone. My husband makes all right money and is now supporting us both. It sucks, even when this started I never pictured myself not working and as it stands now just keeping my house clean or going grocery shopping is exhausting. I feel what you're going through. It sucks. I don't even know what advice you give other than saying I understand how hard it is to try to live your life in this condition.
And by the way the app I use for Reddit is Relay for Reddit and it's pretty great, it has a few bugs here and there but good features including a button to filter out posts you've seen already.
As someone with 5 herniated discs, degenerative disc disease, muscle spasms and arthritis all over their back, I haven't found much that relieves the pain when I'm moving around and can't stand more than a couple minutes.
My doctor gave me a back brace for when I have to be out and about, so that may help you here. I also got an adjustable bed and sleep with my feet and upper body elevated, which helps with the pain.
I use a Lovehandle phone grip. The pop-up socket phone grips required too much strength and paying attention. Probably any of the strap ones work better than the socket ones. The strap one lets me sort of dangle my phone when I can't hold it. It still requires wrist strength, but the fingers don't have to work as much.
It’s an old book. A lot of folks do have tender points, but it is no longer part of the diagnostic criteria. You can find information about the current criteria at the following links:
If they give you any hassle you may want to show them the information in the above links. The American College of Rheumatology is generally accepted as the authority on fibro, and of course the Mayo Clinic is one of the most respected medical establishments anywhere.
Going to one on one therapy with my psychologist and group therapy for chronic pain has helped tremendously in the mental department. Otherwise, I would always feel isolated and lonely. As much as my husband tries to empathize (and he is really wonderful), not even he can understand what I'm going through. My psychologist helps me gain perspective and my group therapy is great for feeling less lonely.
Try meetup.com and search for a fibro or chronic pain group in your area, if you can't afford or don't have access to therapy (or don't want to go to therapy).
What about Mechanical Turk? It's a business run by Amazon in which you can take short contract computer/office work jobs, seems like it might be what you're looking for. I haven't tried it myself yet but I've heard good things about it.
Edit: I just glanced at the website again and the jobs are literally minutes to hours long it looks like so it might not be exactly what you're looking for, but might get you a little cash while you're looking for something more permanent?
PharMeDoc Pregnancy Pillow, U-Shape Full Body Pillow and Maternity Support with Detachable Extension - Support for Back, Hips, Legs, Belly for Pregnant Women (Light Blue) https://www.amazon.ca/dp/B07M79KGPM/ref=cm_sw_r_cp_api_glt_i_1Z8P1BDAGEV0WB9EDQ90?_encoding=UTF8&psc=1
Here’s the link for it!
I don't have a picture, but here's the Amazon link to what I purchased and you can click it and see the pic. Not affiliated, of course.
Costochondritis is a condition very commonly co-morbid with fibro that causes chest tightness feelings. Essentially, the muscles in your ribs might be acting like your other muscles do when you overwork them. It can be mild, like normal chest tightness, or it can be severe, like the mimic heart attack that put me in the ER a couple of weeks ago (for the first time ever). If you're having trouble with your arms/neck, you might be holding some tension there. Anti-inflammatories can help, massage or physio might.
With your burning and tingling, have they checked your shoulders for bursitis? I get tingling and numbness in my arms due to that and my shoulder's themselves rarely hurt, so I never realised what it was until I got my shoulders ultrasounded after an injury.
So, high CPR and ESR levels seem indicative of an autoimmune disease. I would start your focus there. Autoimmune diseases can definitely cause pain and fatigue.
Is your pain mostly in your neck and shoulders, or all over? My toolbook for pain relief: heating pads like this one:
Epsom Salt baths, massages and unscented Bengay. I went to physically therapy for a short time. It was helping but I developed a foot injury and had to stop temporarily.
Sure! I got this one
It folds up, is currently $20, weighs 6 pounds but supports a weight of 300 pounds (according to them, at least, all I know is it supports me and has a 4.5 star rating) and is lightly padded.
There is no back on this one, which is trade off I made. But I'm sure there are others out there
I’ve had good luck with My Pain Away Fibro Cream. Found it on Amazon. It’s about $12. Main ingredient is arnica. I know homeopathy is bullshit, but something in this cream helps me. I figured for $12 it was worth a try.
ETA: Here’s a link to the cream
Topricin FIBRO Pain Relieving Cream (6 oz) – Rapid Relief For Fibromyalgia with Patented Formula - Reduces Duration and Intensity of Fibromyalgia Episodes, Improves Sleep and Restores Energy https://www.amazon.com/dp/B011LM0S20?ref=yo_pop_ma_swf
Firstly, I’m so sorry you’re going through all this. Fibro flares are agony. A good fruit to eat for potassium is kiwi- they have more potassium and vitamin C than bananas and oranges, plus they’re super tasty! If you’re looking for a magnesium supplement, be careful of the kind of magnesium- some can cause issues with your digestion. I bought one off of Amazon to try, and it didn’t hurt my digestion but it also didn’t do anything for me (I guess my magnesium isn’t one of my issues)- if you’re in the USA and want to try it, you can find it here: Source Naturals Magnesium Malate... https://www.amazon.com/dp/B000GFJJKQ?ref=ppx_pop_mob_ap_share It’s Magnesium Malate, which should be easier on the digestion. The only downside is the bottle is HUGE so if it turns out that magnesium isn’t your issue, you have a ton of pills still.
If you’re in a state/country that legalized medical marijuana, I’ve found that having some is one of the only ways to break the muscle spasms I get from my fibro. I don’t smoke, but I use tinctures, topicals, and occasionally cookies from my local dispensary.
If you're comfortable sending me your email, I'd happily send you the ebooks for free!! I just purchased a "work at home" bundle of ebooks. (It was a short, temporary sale, otherwise I'd send you a link to it!) I'm not sure how much individually buying each book would cost... and I don't mind sharing!! For virtual assistance, I have E-Marketing Essentials for Virtual Assistants: How to Grow Your Business Online in Less Time and with Less Effort by Lisa Wells and The Bootstrap VA: The Go-Getter's Guide to Becoming a Virtual Assistant, Getting and Keeping Clients, and More! by Lisa Morosky.
Other categories in the bundle include "Etsy & Product Sales" (main reason I bought it - I want to start an Etsy shop!), "Freelancing," "General," "Getting Things Done," "Growing a Business," "Job Opportunities," "Legal & Accounting," and "Work & Life Balance." Each category has several ebooks in it (as well as e-courses, but I unfortunately can't share those)!
I'm more than happy to give more info about what I have in each category and/or send ebooks to anyone who is interested. :)
My mom has a three-wheel walker that is great. It folds up so it can be put in a car; she uses it everywhere.
There are lots of them out there, some even with seats so you can rest.
This is the one she has
I have this one but it’s way more bulky.
Seriously, the three-wheel kind is really good. My mom is the envy of her assisted living facility (although she had it before she moved) and even medical staff have remarked on it.
Dry shampoo is tricky. Watch some youtube videos on how to use it when and why. It dries my skin out so it requires a shower the next day or so, but it really works to get by.
My first bin was from the dollar store and was just a random bucket. Now I've got these wash bins that have a drain, loads easier. https://www.amazon.com/dp/B00AVWE6O8/ref=cm_sw_r_cp_awdb_imm_K43TEAGXRJ65GRGTK7SK
This thing helps me most nights. I have a few pillows on my bed and switch between thinner and thicker depending on how my neck feels at the moment.
Pancake Pillow The Adjustable Layer Pillow. Custom Fit Your Perfect Pillow Height. Queen Size Luxury Pillow https://smile.amazon.com/dp/B00OM0YH6W/ref=cm_sw_r_cp_api_glc_fabc_yzdaGbNBYJM83?_encoding=UTF8&psc=1
I use this stuff all the time, though my wife hates the smell. So I've been buying menthol bath soak and mixing it with bargain bags of epsom salt.
It's the menthol that really helps relieve the pain. The hot water and epsom work well too. But that menthol, oh boy. I do this once or twice a week.
That’s the hard think- to see what works for you.
I also have to recommend these books that also show how to posture and how your partner can help:
This is an awesome list. I didn’t like the side effects from some meds like gabapentin but am so glad it’s helping you!
I’m getting this little cycle peddle thing delivered today to help build strength, I’m so excited for it :]
Could you explain the reason for the magnesium things you take?
Sunny Health & Fitness Magnetic Mini Exercise Bike with Digital Monitor and 8 Level Resistance https://www.amazon.com/dp/B07QZHNWK8/ref=cm_sw_r_cp_api_fabc_80MSFbNNJQNTZ?_encoding=UTF8&psc=1
The ones at chiropractor offices are amazing but you won't find those on amazon, they reach only the top level of muscle and typically the pain is at a lower level. I think mine helped a TINY BIT in conjunction with my muscle roller stick, daily physical therapy exercises, and epsom salt baths.. so over all, not much on its own.
As an alternative, if you're having nerve pain I HIGHLY recommend trying this supplement. I'm absolutely serious. I was on gabapentin and ive completely stopped taking it. If you decide to give it a shot, take one twice a day with a meal. See how you feel after a week. It's half the price of a tens unit and if it doesn't work you won't be out much time or money. It was the only effective medicine for me out of all the prescriptions I was given over years and there's no side effects because it's a natural supplement!
BRI Nutrition Alpha Lipoic Acid Softgels - 60 Count 300mg Fast Absorption Liquid Softgels https://www.amazon.com/dp/B00R0F2OUC/ref=cm_sw_r_other_apa_GMb5xbW37QN7X
I sleep on a combination of five pillows. Sigh.
1 - memory foam wedge pillow (like for acid reflux) which helps reduce dizziness/nausea. Mostly I use another, softer pillow on top of it, but sometimes I use it alone when stomach sleeping.
2 - shredded foam pillow which is amazingly soft (no jaw pain!) but also amazingly supportive (no neck pain!) and doesn't flatten. Can be used flat or scrunched up or stick an arm under it or whatever depending on which way I've rolled. I place it on top of the wedge. $12-ish on Amazon: https://www.amazon.com/gp/product/B01EQHTT54/ref=oh_aui_detailpage_o02_s01?ie=UTF8&psc=1
3 - body pillow, recently replaced with the Amazon Pinzon brand pillow which I'm not sure is right yet. Good for my shoulder and hips when I sleep on my side, but this particular one might be too thick/firm for my preference.
4 & 5 - 2 random king-sized fiber pillows which I set on either side of the wedge, and use as hand rests when side or stomach-sleeping on the wedge pillow + foam pillow. This way I don't end up with weird circulation or stiffness in my hands from them ending up hanging off an edge at an odd angle.
I have a shredded foam/gel pillow which I acquired almost a month ago, and I love it. One of my favorite things is that it is adjustable, because after sleeping on it a couple weeks I think I'm going to pull a handful of filling out to make it not quite so thick and fluffy. Having said that, it is both thick and fluffy and yet soft and supportive, and so far their claim that the fabric type is cooling has been my experience (a bamboo pillowcase probably also helps.)
This pillow from Coop Home Goods via Amazon is the one I got, and although it's kind of pricey I would absolutely buy it again if something happened to it.
Unfortunately, as much as I love their body pillow for being soft and squishy and supportive, I can't say the same because it is HOT. I'm not sure if that's because of the thick fabric on the cover I am using for it, and don't have another cover handy to test. I do have and like the Pinzon body pillow from Amazon, which took a little bit to break in so it wasn't over-stuffed, but is now super comfortable.
I will second the compression glove idea, but finding good writing utensils helps too. I use these ones https://www.amazon.ca/Staedtler-Triplus-Fineliner-Black-0-3mm/dp/B009CQKL3Y (sorry if the link is weird, I’m on mobile)
They require very little pressure, and don’t bleed through or streak as much as other pens with this kind of ink do. I find it’s much easier to write with these than a pencil even.
I used one like this when I had surgery and couldn’t lie down. I really like it.
Also, Pomodoro technique helps deal with the brain fog.
Pomodoro is a way of structuring your time: 25 min. of work, 5 min. break. There's a bit more to it than that, but the simplicity is part of its power.
The 25-min. chunks prevent your brain's RAM from getting overtaxed. And every 5 min. break is like dumping your cache.
I rely on a Pomodoro-timer app on my phone. The app I like best is called Productivity Challenge Timer, in both Android and IOS: https://play.google.com/store/apps/details?id=com.wlxd.pomochallenge&hl=en_US
I'm tearing up right now because I can sympathize like you wouldn't believe. I hope you find contentment and joy. Buddhism has helped me alot, specifically through meditation. Read "Mindfulness in Plain English" Here's the link for amazon...and a free version to download.
I'm sorry for your loss. You are NOT alone in your experience. It doesn't make it hurt less, but just know we are all here with you and if you need, can lend a shoulder or ear.
If you're in the US, here's a pressure system map. I also keep a barometic weather glass in my living room to track pressure changes.
You can also check out TWC Current Surface map to see what pressure systems are on the way. Weirdly enough, I don't necessarily have extra pain every time a system comes through. Other factors must be in play, for me at least. Maybe how quickly it's moving or how big the change?
My fibro kicked in suddenly a year ago after a traumatic event and I can tell you it has 100% caused my immune system to go haywire. I have had more infections this year in multiple parts of my body than I have had in my entire life. Two bout's of the flu and I also developed allergies for the first time this year. Though fibro is not an autoimmune disease, for me personally it impacts my immune system greatly. So when I hear the news that Covid 19 is only detrimental to the elderly and immune compromised, I count myself in that group.
That being said, all of the viral infections I have contacted have been when I let my guard down and stopped taking my immune boosting herbs and supps. Daily elderberry syrup shots, echinacea tincture, vitamin D, and mega dosing B&C has been the magic ticket. Obviously, these won't make you invincible but in my opinion mitigate the chances of infection and severity of symptoms if infected...I can't speak specifically for covid though as this is a whole new ball game.
I live in the same town and within a few miles of two confirmed cases. There is no hand sanitizer, bleach, rubbing alcohol, etc on the shelves anywhere. I mean anywhere. Stock up if you can before it hits close to you. As redundant as it is, hygiene is huge.
Covid is serious. It's not comparable to the flu, mortality rate is many times higher but try not to live in fear. Fear=stress=flare. IMO flares weaken the immune system from personal experience.
It also sounds like you have an awesome rhuem! That's great : )
One of my routine podcasts set me at ease about Covid, it's well worth a listen💗
I have a barometric weather glass in my living room. It helps when I see the physical changes to know I'm not feeling horrible for "no reason". The low pressure systems are usually worse for me than the high pressure. I also check the US current pressure map to see what might be on the way.
Other than giving myself permission to take a nap, I haven't found a good way to combat the fatigue/pain/anxiety that hits with pressure swings.
Actual LMFAO. Stock photography is as painful as fibro! I'm in marketing and my team and I keep threatening to buy each other these: https://thenextweb.com/dd/2016/09/14/adobe-put-earths-worst-stock-photos-t-shirts-want-one/
My body temp is usually around 97°. 95°, however is the high end range for hypothermia. If you feel cold or your temperature drops much more try to warm yourself up.
Oops, the first wasn't even available at the LinkOut source provided. I forgot my university proxy access was on. Sorry!
Here's the first, Neuroendocrine and Immune Aspects of Fibromyalgia: http://link.springer.com/article/10.2165/00063030-200115080-00004
And the second, Serotonergic markers and lowered plasma branched-chain-amino acid concentrations in fibromyalgia: https://www.researchgate.net/publication/12222906_Serotonergic_markers_and_lowered_plasma_branched-chain-amino_acid_concentrations_in_fibromyalgia
Those should work!
I was recently told I had fibromyalgia and cut out gluten, dairy and most sugars (I still have a bit of honey) 4 weeks ago. I was bloody miserable at first, but once day 3 subsided, I felt a lot less bloated and had less IBS fibro-related issues. Do plan ahead with groceries, makes it much easier.
It's definitely worth keeping a food-journal to see if anything you eat causes flares.
I am also a keen believer that women who have fibromyalgia should consider tracking their monthly cycle, because it may help us plan for flares better. Check out my blog post on it here:
Good luck xo
Pro tip. Find one of these that everyone is recommending and then, if you like me don't have enough money to buy them, find the features that make those chairs awesome (they'll be in the description of the chairs on their websites) and go searching for other chairs with those features.
For instance, my BIL owns this Capisco chair which felt really nice when I sat in it because it automatically corrected my posture (if my posture is out of line even a bit I totally pay for it in pain) but it costs $830.
I looked into the names for the different features and found that the seat part, which I'd most liked, is called a saddle seat. And I liked the footrest ring, too. So I looked for those two specific features and found this $200 chair.
It's definitely not the same as my BIL's chair, but it has the same two features I was looking for in particular. And guess what? I love it.
This is just an example, mind. I don't think most folks with fibro would like this style of chair. But the point is to find the specific features you want (and confirm that there are free returns) and then research to find a less expensive chair with similar features. Might not work out, mind, but if you buy a chair with free returns you really don't have much to lose
It's the Nanolume pain tracker& diary app for android, I don't know if there is something similar available for the Iphone (never had one).
Here's the link in case you are tired/lazy/fogged/just want it :)
I have this with my feet, especially after walking (not far, just to another room) and I found some socks online with ice pack slits and have found using them really helpful for when I need them to cool down. I also have these glove ice packs from magic gel on Amazon which might be more helpful to you! You can also heat them up if needed 😊
My other advice would be to get a new neuro if you can. If you can find a good pain clinic, not one of the ones that is just churning through patients but one that's actually taking the time with each patient that would be great. I've had hit or miss luck with that, but at least some of it was hits.
There's a really good book about fibro - it's called The FibroManual. Written by a doctor who has fibro herself and specializes in the area. Fantastic, evidence based reading and it goes through loads and loads of areas you can pursue. It made me feel a lot more empowered as a patient, gave me things to talk to my doc about and to even do myself.
Nothing is going to help except rest, but you may want to try croc flip flops. I have several pairs of these just because I bought one pair and they were so springy and comfortable that I bought several more pairs to have when I wear them out.
The first pair I bought just for around the house for the same issue you're having and have had them for a couple years now and show no sign of wearing out any time soon. They're really well made and easy on the feet. If you have foot pain when standing, I highly recommend them. That's why I got them.
Would compression gloves help at all? I've used them for tendonitis and occasional stiffness, but I haven't had the level of pain that you're describing, so ymmv.
Something like this: https://www.amazon.com/Arthritis-Compression-Rheumatoid-Fingerless-Dailywork/dp/B07CSN69MW
These we’re the ones I bought. I didn’t want to spend much in case I couldn’t sleep with something on my head. Sound quality is good enough for spoken word, the battery lasts a surprisingly long time, and they don’t leak sound on low volume. They don’t block snoring at all if that’s a concern. I’ve slept in them every night for almost a month now which is pretty impressive considering my own hair bothers me.
I think it's great that you have done research and you're trying to be supportive!! I'd say just try to be there for her, ask if there is anything you can do for her, to help her.
Also, since you asked about gift ideas, she might like this! It's a microwavable stuffed animal warmer! It's filled with grain and dried lavender. I have a fox and an owl, from this same manufacturer (Intelex) on Amazon. It might be a thoughtful gift if she gets pain relief from heat pads. This one is a turtle:
I almost forgot - I recently started taking this and I think it’s helping but it’s too soon to say. I only have had one cycle on it so far:
Integrative Therapeutics - Calcium D-Glucarate - Promotes Detoxification and Healthy Estrogen Metabolism - 90 Capsules https://www.amazon.com/dp/B001ALY8SS/ref=cm_sw_r_cp_apip_dS5gOxt8EIPXQ
And a lot of people have success using a progesterone cream. This is a good one:
Emerita Pro-Gest Balancing Cream with Vitamin D3 | USP Progesterone Cream from Wild Yam for Optimal Balance at Midlife | 4 ounces https://www.amazon.com/dp/B00V2WT3LM/ref=cm_sw_r_cp_apip_U25znZ9ENUXTL
My sister has the Mirena iud and that has stopped her periods entirely, so that might also be an option for you?
I hope you find some things that give you some relief. I think I took way too long to get help when my PMS went crazy. I let it get super bad and really suffered for a couple years before I tried to “fix” it.
If you have a gynecologist you like and trust they could help you, too.
Oh I used to drink Yakult religiously, mainly for the taste. Lol But I found that the probiotics I take now have been the best out of all the kinds I’ve tried! I’ll see if I can figure out how to link it for you. :) They have them on Amazon, formulated for men and women.
Garden of Life Dr. Formulated Once Daily Women’s Shelf Stable Probiotics 16 Strains, 50 Billion CFU Guaranteed Potency to Expiration, Gluten Dairy & Soy Free One a Day, Prebiotic Fiber, 30 Capsules https://www.amazon.com/dp/B00Y8MP4G6/ref=cm_sw_r_cp_api_glt_fabc_WEDEVT85YJH9QSP87C4B?_encoding=UTF8&psc=
That’s for women, but they also have a men’s version. I hope the link works, I’m not the best with Reddit. XD I’ve a lot to learn still.
I picked up a couple of these during COVID because I had a really bad bout of back pain that made wearing regular bras awful: https://www.amazon.ca/gp/product/B07LBSJ4DV/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&psc=1
I think these are cute, and I like that the straps are adjustable. They have good support and are decently wide, but they only come in standard sizes. Check zappos or shoes.com, they might be cheaper.
I've got a pair of Spencos flip flops that are pretty good, and I like Vibrams Aliza.
I've been looking for something new too, I read good things about Zullaz and Fitflops, but I just ordered them, so not sure yet.
So the one I have was given to me and is about 25 years old but this one on Amazon is similar and there are lots of options there for around 50 dollars. https://www.amazon.com/Simmons-Kids-Ultra-Compact-Travel-Bassinet/dp/B07M7DD7XT/ref=mp_s_a_1_16?dchild=1&keywords=portable+bassinet&qid=1620775122&sprefix=portable+bas&sr=8-16
I got mine ages ago at Hot Topic I think (I didn’t even know of the show, I’ve never watched an episode but I liked the saying) but here is a link
This one was a game changer for me, plus it gave my spouse, who loves to cook, a way to help:
Also, check out her first bookThe Fibro Manual. Some people don't like that she's selling products now, but that doesn't detract from her expertise and validity for me. She's an M.D. who was diagnosed with fibro while at a prestigious med school, couldn't get answers or good cate, and literally wrote the book on it.
Snailax 2-in-1 Shiatsu Foot Massager Warmer - Soft Plush Feet and Back Massager for Women Men with Heating Pad, Back Massage Cushion, Massagers for Back,Leg,Foot Soreness https://www.amazon.com/dp/B07ZPYF2C9/ref=cm_sw_r_cp_api_glt_fabc_FYA071JJMX8JSDZM3H0C
My sister brought this over and then gave it to me because she saw how much I liked it. It really helps work out the tension and soreness I get in my neck and shoulders, and calves occasionally.
Bojeux Hand Warmers 9000mAh Hot Rechargeable Hand Warmers 14Hrs Long Lasting Heat Reusable Pocket Power Bank Hand Warmers Double-Sided Heating for Camping, Outdoor Sports, Winter Gift https://www.amazon.com/dp/B08F3C4WY9/ref=cm_sw_r_cp_api_glc_fabc_QAYaGbS3QN86W?psc=1
This is the one I got. LOVE it. It worked absolutely perfect and provides everything I said above!
they are! these are the ones my dr ordered me.
I did not know that Unisom now has different versions, such as tabs, capsules, melts, and gel caps. Some have doxylamine, and some have diphenhydramine. So thank you for that info. But it is still much cheaper to buy the generic versions. As I mentioned the Kirkland Sleep Aid from Amazon (Or direct from Costco, since Kirkland is Costco store brand), is a very good price. Amazon also has a brand thats a similar price. Walgreens and Walmart (Equate) have store brands but they twice as expensive as the Kirkland or Amazon. But if you dont online shop at least those are options. Thanks again, and congratulations on becoming a mommy soon.
I made same mistake with our new house, but found this and I love it.
Inflatable Portable Bathtub foldable bathtub plastic Bath Tub Portable Soaking Tub Inflatable Spa tub bathing tub For Adult Bathroom Foldable tub Adult size Large size https://www.amazon.com/dp/B0823QL9ZZ/ref=cm_sw_r_cp_api_glc_fabc_HiP8FbP1TS8NF
Here’s the one I currently use! It has both an auto 2 hour shut off and the option to leave it on indefinitely. I find that some days the top setting is way to hot and some days it’s not hot enough....but I can’t speak to if that’s just me or it it’s actually a fluctuating temperature. But overall it does it’s job! (and it’s fuzzy on the one side which is nice)
I don't foam roll my back, because my understanding is you shouldn't roll directly on the spine. I do, however, use a lacrosse ball to roll out my back. I also use the back buddy.
Thanks for your insight on LDN. I will be finding a new PCP soon-ish to get an annual physical, and maybe I'll talk with them about it.
I'd recommend printing out an image like this. I got a journal to track my symptoms that has one, here My acupuncturist seemed to find it helpful/not weird.
Hi, Luckily, I live in a state where MJ is legal. I found this bath salt which has cannabis in it. It's sold on Amazon. It's pricy, bug works!!!
I like biofreeze gel...it numbs nerve endings with menthol.
I use tanning bed in the Bc the heat feels amazing and helps the pain, but only do a couple months in the year.This week I started hot yoga. The heat works like the tanning bed would, while I get exercise and stretching in. The mediation helps, too. I have only been doing it for 4 days and can tell difference in my mood, energy and pain level!
I currently am using cymbalta and have tried most prescriptions for fibromyalgia. I also take weekly vitamin B12 injections.
Yeah. Makes me feel absolutely panicked sometimes. I keep high fidelity earplugs (https://www.amazon.com/Etymotic-Research-High-Fidelity-Clamshell-Packaging/dp/B00GX1TOFM/) in my purse for when I get overwhelmed with sound. I also use a bucket hat (https://www.amazon.com/Hat-Depot-Unisex-Cotton-Packable/dp/B014V0DUME/) to cut down on light and visual motion.
Too much of just about any sensory input can push me into a crabby/panicked/desperate mode. Light, sound, motion, music, smell, touch, tempetature, etc have all triggered my fight or flight at times.
oh! and you can buy the WHO rehydration salts pre-made too. i get it on amazon, it's called "trioral" but i'm sure there's other brands too.
there's also salt tablets, if this is your issue. for example, thermotabs.
I'm going to second the magnesium supplements! I didn't have much luck with the oil sprays, but I drink a glass of "Natural Calm" every night. I've had a significant decrease in muscle spasms at night and during the day as well. When I first started taking it, I noticed a slight improvement in my ability to fall asleep, and after a couple of weeks, I realized that the spasms had started to decrease. I've been taking it for about 6 months now, and it's now on my must-have list. The product is Natural Vitality's Natural Calm drink mix, and I get it through Amazon (https://www.amazon.com/gp/product/B00BPUY3W0/ref=oh_aui_detailpage_o04_s00?ie=UTF8&th=1). I use 2 tsp in a tall glass nightly, and I do NOT recommend the unflavored version.
I have the Amazon Basics foam roller in both 18 inch and 36 inch lengths. It's inexpensive, simple, and it works. The 18 is probably all you need for your legs, and is good for using in limited space. The 36 is great for laying along your spine and doing a "snow angel" pose to stretch out all sorts of back and shoulder tightness.
Massage balls like a lacrosse ball (cheap work-around) or TriggerPoint (recognized brand) can also be really helpful, I have a couple off-brand I just haven't gotten into using them regularly. When I do use them, I really like the results.
I mostly learned from a video. You can get it on Amazon. Only do a few minutes at a time, though. It took several months to memorize the whole thing but I started seeing results from the warm-up exercises alone!
T’ai Chi for Health
I don't have any advice for you as I'm currently going through the same struggle, but I wanted to let you know you're not alone. I honestly feel like I could've written this post, word-for-word. I recently ordered this book on Amazon, and though I haven't finished it yet, it seems to have some great strategies in it, especially for those of us with chronic pain. <3
Here are some on amazon (not that well rated but you’ll get the idea): https://www.amazon.com/dp/B06Y2LJPTR/ref=cm_sw_r_cp_api_i_9LqxBb808A4E4
I buy mine on Etsy, they’re a little more expensive but you can get nice fabrics and ask for smaller or larger sizes. You can search there for “cooling scarf” and just make sure it’s one that uses the gel beads. You can get them made into vests or bracelets, too. They even make them for cleavage! 😂
The second edition just released and it is on Amazon kindle. (Which you can use on kindle devices as well as apple phones, iPads, and I think there is a kindle app for Android as well. There may also be other ways to access kindle books, not sure.
Here is a link (amazon US):
En cuál país vive?
I found a pillow on amazon. I bought so many pillows with good reviews but they were way too tall for me. I found this one and it’s been working well so far. It’s fairly thin 2.5 inches and is a gel memory foam, so it shapes to your head but is still pretty firm.
I found a pillow on Amazon that has neck support and a spot for your head and it keeps the entire spine aligned without raising the head too high. Then there are raised sides for if you sleep on your side. The pillow needs to be fitted to your shoulder size so you need to be measured before choosing a size. The whole goal of the pillow is to keep the spine aligned and support the head without adding stress to the neck and shoulders.
Therapeutica Sleeping Pillow - Average https://www.amazon.com/dp/B015N45KDY/ref=cm_sw_r_cp_api_i_xxjdCbMMRS1Z5
They have petite and child sizes!
These are the knee sleeves I use. I expect the dozens of other cheap brands are identical; there must be similar ones available in the UK. (It can't be proprietary technology, it's just 1% of a wetsuit!)
Amazon - knee sleeves US$15/pair
They do make your knees smell like rubber though. (That may or may not be a good thing depending on what sort of nightclubs you hang out at.) There are also ones which are made of spandex with Velcro straps if you don't like the wetsuit material.
I like the wetsuity ones because straps are annoying. Since they're not adjustable, you'll need a tape measure to get your size right.
I’m not a doctor, I’m not your doctor and I can’t tell you what will help you.
I read a book by Dr Teitelbaum, and watched some videos on the youtubes.
The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy! https://www.amazon.com/dp/1583335145/ref=cm_sw_r_cp_api_i_fdMzFb21RFEFY
I started taking ribose powder three times a day and then tapered down to once a day. It clears the fog from my brain.
I don’t know if this is of any help, but I wrote my entire masters thesis lying flat on my back using this as a desk. I used pillows so that I could hold my arms at roughly 90 degree angles. Found out right before I defended that I also had MS, which would have been helpful to know, lol. I would pour sweat from just the exertion of typing but I made it, and nothing in my life before or since compares to the high I got from my thesis committee telling me I passed.
Huge barometric pressure changes almost always ruin my day/week. I keep a glass barometer on my wall to remind myself there are physical events causing my flares.
I take one of these capsules breakfast lunch and dinner
Gaia Herbs, Turmeric Supreme Extra Strength, Turmeric Curcumin Supplement with Black Pepper, Daily Joint Support & Healthy Inflammatory Response, Vegan Liquid Capsules, 120 Count (packaging may vary) https://www.amazon.com/dp/B00F1J8K4I/ref=cm_sw_r_cp_api_i_FKWpFb2EGWWJN
And I take one of these capsules with lunch and dinner, because I take 300 mg gabapentin with breakfast
Terranics Magnesium Complex, Broad-Spectrum, 500mg, 120 Veggie Capsules, Chelated for Maximum Absorption, Support Sleep Stress and Anxiety Relief, Muscle Relaxation Recovery, NON-GMO, Soy, Dairy & Glu https://www.amazon.com/dp/B07SSWKMBN/ref=cm_sw_r_cp_api_i_BLWpFbZKK9RXP
If I miss a dose or two of these, I can feel it.
I haven’t had a chance to try this chair, but it’s been recommended to me by a friend and I’m looking into its availability in my area. I’ve been told it moulds to your body and prevents pressure spots, which would be wonderful for me as this is a major cause of pain.
bungee office chair
I would buy her a lot of icy hot, thermacare patches for her spots that hurt the worst and a TENS unit. This is the one I recommend to new users:
If she wants a heavy duty one later, she can put this little on in a small cosmetic bag and put it in her purse so she has pain relief on the go.
This book is what all the big pain programs in the US use for the basis of their treatment program. It comes out of the chronic pain program at Harvard.
I’ve bought one from amazon that you can change from recumbent to upright. The quality isn’t excellent but in my opinion is worth it for the price. One downside is that it even though it is adjustable, it isn’t the best for short people. I’m 5’3” which isn’t even that short and I put it on the lowest notch to use it. I usually just put a folded pillow there for support and that works fine. I like that you’re still able to use the back support in the upright position as well! It is currently out of stock but I’m sure there are some that are similar! It was $166.
Here is the link: https://www.amazon.com/dp/B07CWQPGZ6/ref=cm_sw_r_cp_api_i_AerMEbKKRN54H
I came across this app "correlate" the other day.
It looks promising.
I love their app "snipback" which is why I feel comfortable recommending another app by the same company.
Have you tried sleeping with a cervical roll? Doing neck stretches daily help too. Also, have you tried asking your doctor for a physical therapy prescription? My therapist has really helped my neck pain/shoulder pain.
This is the roll I use:
The Original McKenzie Cervical Roll, Support Pillow to Relieve Neck and Back Pain When Sleeping https://www.amazon.com/dp/B007G4TVI0/ref=cm_sw_r_cp_apa_i_yI4HCb9T3WJ3Z.
My hubs just got me a super adorable bag that I can have on my shoulder or carry in hand, it’s got tons of sections so I can carry all my “illness necessities” (snacks, barf bag, medicine, etc etc etc) in one section, regular purse stuff in another, wallet elsewhere and so on. It always depressed me to have to take a bag of extra stuff in case I feel sick or need an emergency snack, so he got me something really cute and nice looking and it cheers me up a bit more now. He often carries it for me, but I put it in the cart if we are shopping where there are carts, or carry it in hand and switch hands often.
This is my favorite book that I’ve found - lots of scientific explanation & some very solid recipes. https://www.amazon.com/Chocolates-Confections-Formula-Technique-Confectioner/dp/0764588443?crid=25GLONMA924AY&keywords=chocolates+%26+confections&qid=1538291326&sprefix=chocolates+%26+&sr=8-4&ref=mp_s_a_1_4
I've found this automatic call recorder very handy. It's super simple and stays out of the way. Also, it copies the recordings to the cloud, so you can pick them up on a tablet or PC:
Weather Underground has a barometric line graph in the 10 day outlook section in the bottom tabs. You can customize the graph and get rid of the extra data.
The past few weeks have been a nightmare rollercoaster of pain and twisted sleep habits. Looking at the pressure systems on the weather map at least lets me know it's a real, physical occurance causing my flare.
It might sound a little odd, but I wonder if fibro is an illness being impacted by climate change. The extreme quick swing in weather pattern is what bothers me the most. Not sure if that pattern has always been around or if it's become worse in recent decades.
I swear by this: https://www.walmart.com/ip/10794879?wmlspartner=wlpa&selectedSellerId=0&adid=22222222227009833902&wl0=&wl1=g&wl2=c&wl3=40843487792&wl4=aud-273067697022:pla-66642815620&wl5=9033105&wl6=&wl7=&wl8=&wl9=...
Low barometric pressure systems are what usually get me. A quick shift from low to high or high to low can also be awful. Here's an interesting article about likely reasons for the increased pain.
Back rubs (also good on other achy areas) with magnesium may be nice if her back is feeling achy. I have tried this and it’s been nice so far: https://www.amazon.com/dp/B01MFA39FE?ref=ppx_pop_mob_ap_share
If she’s up to it, full spectrum CBD may be helpful 1-3 times a week. 7 Leaf Solutions based out of Colorado has been good to me.
Find places that you can go for leisurely, scenic walks that have benches along the walk. Nature and walks can be a little helpful if she’s up for it. The more scenic and flat/stable (ground) the better. :) A mood booster, a nice way to connect, and good for the health.
A light-weight weighted blanket. A soft & fluffy robe for the cold months. Some comfy slippers or uber soft socks for cold floors.
Research foods that fight inflammation (or what to steer clear of) if you make a meal for her. It may help, it may not…. Each person is different.
If she’s cooking, things that take a bit more muscle are really nice to help with (emptying heavy pots of water, cutting up veggies). Also there are kitchen scissors that help make prep-work cutting a little easier sometimes, as an alternative to knives. Also, those kitchen foam floor mats are really nice to have too.
A nice heating pad that doesn’t bunch up. I have liked this one so far: https://www.amazon.com/dp/B00474Z0Q4?ref=ppx_pop_mob_ap_share
Nice gifts might be a spa massage (make sure it’s something they’d like, not everyone wants that). It can even be just a foot massage.
A pill organizer is handy (if she takes gabapentin it can make you a little forgetful sometimes).
I found this.
I don't think this is the precise one, but something like this:
I think you are asking about the Gua Sha stones. The kit I have is no longer available, but this one is very similar.
I use them on myself but, obviously I can't reach everywhere. I use them on my jaw, neck, upper shoulders, temples, skull, arms, quads, knees, calves, ankles, and my feet. Basically, everywhere except my back and my butt.
Magnesium but the only I’ve found to be effective is called MegaMag, I get it on Amazon. Can’t live without it.
Heating pad every morning.
This neck massager which I use after my heating pad morning and night: FlexWorks Shiatsu Neck & Back... https://www.amazon.com/dp/B09LBB3NBN?ref=ppx_pop_mob_ap_share
Eliminating gluten and dairy, I’m always way tighter and in more pain after eating them.
Massage if you can afford it, but a medical massage not a normal one.
I would try to see a doctor if you can and try to get an X-Ray. I also would recommend investing in a coccyx pillow if you think it’s going to be an issue that lasts for more than a week. It’ll help take the pressure off of your tailbone and you’ll be much more comfortable throughout the day. My wife fractured her tailbone and this helped her a lot.
I’m in the same situation as your wife and have been stranded at home but I recently purchased this rollator and it has really helped me.
Good luck to both of you.
I have this one and cant live without it. I even take it with me when I travel.
I've used a number of different ones, but I just got this one recently because it is the easiest to move and store and actually works decently--and it fits under a table, so I can use my computer while using it: https://www.amazon.com/gp/product/B08SLP2L99/ref=ppx\_yo\_dt\_b\_search\_asin\_title?ie=UTF8&psc=1
I also carry a lot of stiffness in my neck. I bought a neck and shoulder relaxer on Amazon and it really helps, I usually will do it before bed but you can use it anytime.
I was taking Naka Magnesium Biglycinate for over a year, but just recently changed to a regular magnesium which isn't necessarily as good but more affordable and accessible for me at the moment. This Naka one was good though, didn't upset the stomach and was helpful for muscle pain. It is however, only 200mg per pill. So depending on your daily dose, you'll want to adjust as needed.