Fibromyalgia Survival Guide

Being diagnosed with fibromyalgia in 2022 marked the beginning of a challenging journey. If you’re in a similar boat, you understand the frustration of obtaining a diagnosis and the often inadequate treatment plans. Over the past year, I’ve discovered strategies to alleviate my symptoms and better cater to my needs. In sharing these insights, my goal is to offer support to those facing similar struggles. While what works for me may not guarantee results for everyone, I hope you find something beneficial among these suggestions. Feel free to share your own recommendations in the comments!

Understanding My Symptoms:

Fibromyalgia manifests differently for everyone, and my symptoms range in intensity. Primarily, I experience lower back pain, joint pain, widespread muscle pain and stiffness, and a peculiar sensation I’ve termed “spicy veins.” Fatigue, insomnia, depression, anxiety, headaches, migraines, fibro fog, and sensitivity to cold are also part of my daily battle. It’s essential to note that my journey involved exploring other conditions, leading to the discovery of celiac disease, which might influence some of my symptoms.

Let’s dive into all the things that have helped or things that were recommended to me that didn’t help.

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Medications:

Discloser: I am not a trained health professional. All articles are based on my own experience and opinions. Please consult with a health professional before making lifestyle changes.

Injections & Prescriptions

This is the first thing that my doctor recommended, and I’m sure you’ve heard the same. In October of 2022 I was prescribed cymbalta which I took for a few weeks. And yes, it did improve some of my symptoms, namely the spicy veins and joint pain. However, the main side effects I got were constipation and trouble sleeping – which are two of my main triggers. So I didn’t like that I might feel better but my body was still in pain. I’d prefer to make sure my body feels better rather than just not feeling the pain. I also didn’t want to be dependent on a prescription and I had read that coming off of it in the future would be worse than any flare I had ever had. In November of 2022 I was prescribed a steroid pack. This literally didn’t help me at all and instead gave me a UTI. In December of 2022 I got two steroid injections in my lower back (epidural). This took a few weeks for me to feel better. After about 6-8 weeks I felt like my pain went from a 10 to about a 6. Which helped, but honestly, for the amount of money I had to pay (thanks America) and the stress I went through (I hate needles) it just wasn’t worth it. My doctor said I could get more injections every few weeks but I just don’t think it’s worth it.

Medical Marijuana

After trying what my doctor recommended I decided to give medical marijuana a try. After all, back pain is the top reason people are prescribed marijuana. In my state I had to apply for a medical marijuana card but the whole process was very approachable and the dispensaries are very nice and comfortable. I met with a pharmacist at the dispensary who recommended a high dose of CBG for my inflammation. I had been taking CDB on its own because that was legal and more accessible, and while I felt it helped my sleep it didn’t help my pain. If you do want to try CDB I really like this brand.

I started taking gummies with a 1:1:2 ratio of THC:CBD:CBG and it’s been the best medicine I’ve ever taken. The THC does give a mental high effect – which I was nervous about at first, thinking it would make me anxious. But honestly, having 3-4 hours of some pain relief really helps to take my mind off of everything and just give me a break from the mental load that comes with fibro. I take it as needed and regularly during a flare. I started with about 5mg of a gummy and will go up to 15mg during a flare. I found gummies the most approachable but I’ve also tried tinctures and have had some luck with that but not as consistently. It does help with my pain and tends to give longer lasting pain relief than pain killers, but it’s still not a miracle fix. When I take it I still feel some pain if I’m moving around. But if I’m chilling on the couch or in bed I don’t feel any pain. I like to take it a few hours before I go to bed because it will make me sleepy and I can fall asleep pretty quickly, plus it helps me get really good sleep. I always feel much better first thing in the morning but the stiffness will set in mid afternoon.

Turmeric Shots

Before my diagnosis, I found that drinking “Golden Milk” right before bed was the only thing that helped me sleep. Here’s how to make it:

2 tsp powdered turmeric
1 tsp powdered ginger
1 tsp cinnamon
1 tsp black pepper
6-10 oz milk of choice (warm or cold)
Honey to taste if needed

I make a big jar of the spices mixed together so I can just add a few scoops to my milk every night. This drink helps reduce inflammation and for me at least, encourages sleep.

Sometimes I don’t want to drink that much liquid right before bed and honestly, I’m just too lazy to make it before bed. So I started making it into shots to take throughout the day. It’s also not the tastiest thing so sometimes it’s better to just take it as a shot and have it over with really quick. I like to drink 1 in the morning and 1 at night or as needed. I got these cute little jars on Amazon because having something cute makes it easier to actually do it (I don’t know why, but it works for me!). You could also make a big batch of it using an old bottle or jar. Here’s how I usually make mine

2 tsp of the golden milk mix
Half the jar with orange juice
Half the jar with pineapple juice
A splash of apple cider vinegar (for gut health, not so much fibro)

I also find that turmeric and ginger are helpful when the headaches hit. However, it doesn’t typically touch my migraines.

Magnesium with Your Water

Magnesium is crucial for muscle function, and adding it to your water can be an easy way to ensure you’re getting enough. This may help reduce muscle stiffness and discomfort associated with fibromyalgia. Personally, I’ve found that Calm Magnesium powder has had the best effect and the easiest to take. I take 1-2 scoops in my water first thing in the morning.

Pain Management Products:

Pregnancy Pillow

This was a GAME CHANGER for me! Literally, it sounds so simple and random, but this pillow and I go everywhere together. I move around a lot at night and this pillow makes sure I have support between my knees instead of kicking a regular pillow out while I sleep. It provides versatile support, providing comfort during sleep and relaxation. It can help alleviate pressure points and reduce discomfort. It has a cover you can easily wash. If you prefer to use your own pillow for your head, you can flip it upside down providing more support for your legs and leaving the top open for your favorite pillow.

Heated Blanket

This has also been a game changer and comes with me wherever I go. I love this blanket for when I’m relaxing, and I have it on me while I work from home too. It has a bunch of heat levels which is really helpful. It’s an easier way to keep me warm than heating my whole house.

Heated Neck and Shoulder Wrap

When my body gets really stiff, I feel it mainly in my upper back and shoulders. And once those get tight I get really bad headaches and migraines that keep me up all night. This little baby – wow! I just wrap it up and within 10 or so minutes my pain is decreasing and I’m able to fall asleep. I also use it during the day when I start to feel my shoulders tightening. There are versions you can heat in the microwave, but I like this one because I can plug it in and keep it warm for longer. Plus, I don’t like the smell of microwave heating packs and I have to keep getting up to warm it back up.

Migraine Hat

I know migraines are so hard to deal with, but this hat is a godsend when they hit. You can keep it in the freezer for cold therapy or heat it up in the microwave for heat therapy. Personally, I respond better to heat. I like it because it goes all the way around my head and covers my eyes to block the light out. I find that applying heat to the band across the back of my head helps the most. It usually doesn’t help it go away, but the compression of the hat makes it easier to get through.

Ice Roller

I don’t know if you experience it, but my face puffs SO easily during a flare-up. This little ice roller is so nice to whip out and roll out the inflammation. You could roll it on other spots too and it can also help with headaches.

Magnesium Lotion

Magnesium lotion does a much better job of relaxing my muscles than regular lotion. I use it on sore muscles and when I do lymphatic drainage massages on myself.

Massage Gun

Massaging yourself can be difficult when you don’t have the strength in your hands. This massage gun comes with a bunch of head options to really help you target different muscles. I personally like to use this on my deep glute muscles that tense up during a flare. I also like using it because I can control the level of pressure and work out tight areas without getting fatigued.

Foam Roller

If you have mobility and strength, a foam roller can be really effective in working out tight muscles and increasing blood flow. It’s also a really affordable option for self-massage. You can get different sizes that each have different levels of intensity.

Sauna Bag

If I had to tell you to get one thing to help – it would be this! I know not everyone responds well to heat, but my body EATS it up. In less than 5 minutes my whole body relaxes and I can lay more comfortably. Because my head is out I feel like I can handle the heat for much longer, benefiting my body even more. After my time in the sauna my body feels more relaxed, less stiff, and I can walk much better. Sometimes I’ll do a sauna session and roll right into my stretches or gentle yoga to really take advantage of my relaxed muscles. I was going to the sauna at my gym 3-4 times a week, but in the winter when I flare up it takes more out of me to get into my car and drive to the gym than the benefits of the sauna provides. This sauna bag is basically a heated sleeping bag. It has different heat settings but I prefer 131 degrees for about 45 minutes. I typically just put it on the ground in front of the TV and watch a show while I relax, or I’ll read a book while I chill in it. Then I’ll do a lymphatic massage or use a dry brush and then take a shower or relax more in a bath with Epsom salts if I have time. I don’t have the time to do it every day, but when I’m flaring I try to do it at least every other day.

Caddy

This is another one of my all-time favorite things. When I’m flaring I tend to get settled in one position and I’m there for a few hours. It’s really difficult for me to get up and keep grabbing things. So I keep all my hobby things – books, my iPad, embroidery items etc, and all medications, lotions, and self-care things I need in this cute little caddy. I also keep snacks and water in it. I take it with me wherever I go and it just makes my life easier and more enjoyable.

Walking Pad

This one is an investment but I highly recommend it if you have a hard time getting outside for walks. I work from home so I originally got it to walk while at work, but when I’m flaring and it’s cold outside I need to walk somehow and this is the perfect thing. I can store it under my couch when I’m not using it and when I pull it out it doesn’t take up much space either. It’s quiet and lightweight, I use it in a 3rd story apartment just fine. Some days I can only get 10 minutes in because of my pain, but that 10 minutes makes all the difference.

Criss Cross Chair

I’ve had a hard time sitting in regular chairs because it’s just uncomfortable and causing that “spicy” pain in my legs. I’ve been working from home on my couch for months because it’s more comfortable. But this chair is perfect and comfy to the point where I can sit comfortably and work all day. I can sit crisscross, which is more comfortable on my hips, and lean back a bit, which is better on my lower back.

Couch Table

Speaking of working from my couch, I finally invested in this couch table for my laptop and snacks. Because I choose to sit on the couch during work and even after, having a table close by where I can put everything is helpful. I like this one because it fits over the armrest to bring the table closer to me than an end table, and it also has an outlet making it easy to have all my charging cords within reach.

Air Purifier

When I was first working with my doctor she suspected I had a mold issue because I had these annoying sinus headaches every day. Now I suspect those headaches are more related to a histamine issue or inflammation. However, when I got this air purifier a lot of my headaches did go away. I feel like when you have an inflammation issue it doesn’t make it better to have junk in the air.

Dry Brush

Dry brushing is key to my self-care routine. It increases your blood flow and helps your body better detox. One mistake I made when I started dry brushing was brushing too hard. It really just needs a light touch. You can watch videos on YouTube to learn how to dry brush properly. I like this dry brush but you can also get ones with handles if you have pain or discomfort when you bend over.

Shower Chair

I didn’t think I needed one of these for the longest time until I tried one out at my gym. And man, it makes showers SO much less tiring. I am often too fatigued to even get in the shower, but if I do I have a hard time standing up. Sometimes I’ll just sit on the ground, but then it’s really hard to get up again. A little seat in the shower makes it more relaxing to stay in the shower and does not deplete as much of my energy while showering. It’s also so much more comfortable to shave sitting on one of these.

Fleece-lined Leggings

I’m a legging girly, through and through. But even if you’re not, getting a pair of fleece-lined leggings is perfect to layer with during the winter. These are so comfy and warm that I don’t always need another layer during the winter. I also have a pair of fleece-lined tights that make it look like you’re just wearing black tights. That way I can be nice and warm but still look cute (which, when I’m flaring any little thing that brings me joy is a win).

Heated Jacket

This is one of my most recent purchases. Having a heated jacket makes going outside much more bearable. It keeps me warm and helps keep my upper back muscles relaxed while in the cold. It works by having a little rechargeable battery in the pocket (which you can also charge your phone with). This one has multiple heat settings, with heat sources in the back and pockets. I liked this one because it also acts as a rain jacket and can easily be my primary jacket for all seasons. I ordered a size up so I can still wear my cute chunky sweaters with it.

Reusable Hand Warmers

Both my husband and I love these! They’re almost like magic. These hand warmers have a liquid in them and a little circle that you bend back and it causes a chemical reaction to turn the liquid into a hot solid. They stay warm for at least an hour, then when you’re done you just boil it and it resets it! We love having these in our pockets for walks, and will even stick them in our shoes. They are also really nice little heat packs to put on sore muscles.

Warm Socks

Regulating my temperature is really difficult for me, especially during a flare. I keep warm fluffy socks in my caddy so I always have them if I start to get cold. Of course, adding a little bit of joy to my life is a must so I’ll get cute seasonal ones to add to the rotation.

Nervous System Support:

Fibromyalgia really messes with your nervous system in different ways. Here are things that I’ve found to help calm my nervous system and make my life a little easier.

Noise Canceling Headphones

These go with me everywhere! They make everything more enjoyable to do. Going to the gym, the store, on a walk – everything’s better with these. Sometimes I won’t even turn them on and they still help. I can also just turn on the noise canceling without listening to anything and that helps too. These go on sale regularly so you can wait for Amazon Prime Days or holiday sales for a better price.

Loop Earplugs

When I’m going out and don’t want to have big chunky headphones on, these loop earplugs are my go-to. They don’t cancel out all the noise, just cut out the background sounds. I’ve worn them to concerts and it cuts out all the background noises, allowing me to clearly hear people talking to me and the band without being overwhelmed by everything else. They are also very discreet, comfortable, and more affordable than the big noise-canceling headphones.

Light Bulbs with Dimmers

Overhead lighting is literally the death of me during a flare. I got these light bulbs so I can easily dim lights from my phones. I live in an apartment with horrible overhead lighting so I opted to get a couple of lamps with these light bulbs so I can dim the lights and set whatever mood I want. These ones also have a setting where it can sync with your phone and certain lights will turn on automatically when you get home so you aren’t walking into the dark. You can also turn it to colored settings like red, which helps calm my nervous system as well.

Eye Mask

When I have a headache or migraine I get really sensitive to light. I also often have a hard time relaxing to fall asleep. This eye mask is nice because not only does it block the light out, but it also has speakers and connects to your phone so you can listen to music while you relax.

Sleep Strategies:

Solid Bedtime Routine

I know, I know, easier said than done. But really, the most beneficial thing I did for my symptoms was establishing a regular bedtime routine. I started by having an hour to an hour and a half before I wanted to be asleep as my “wind down time”. I do all my self-care activities, like my sauna bag, bath, skincare, etc and then I dedicate time to a low-stimulating hobby. I prefer to read or embroider for a bit before bed. I avoid starting any new projects or watching a new show that I’m invested in. I will watch my comfort shows (The Office, Modern Family, Brooklyn 99, etc) because I know those shows really well and can comfortably fall asleep while watching and not be worried I’m going to miss anything. I’ll also take a THC/CDG gummy, drink my golden milk, or anything else that helps me sleep at the top of that wind-down period so that by the time the sleepy effects take place I’m ready for sleep. I also try to maintain this schedule on the weekends for the best result – but I’m naturally a night owl so I don’t always stick to it.

Sleeping 9-10 Hours

Over having a routine, what I find most important is getting closer to 9-10 hours of sleep. So if I do stay up I try to sleep in and get those 9 hours. I notice a HUGE difference if I’m consistently only getting 7 hours, and I will wake up sick to my stomach if I get anything less than 6 hours.

Weighted Blanket During Sleep

I have mixed emotions about weighted blankets, but I started using one at night and it was really helpful. I am a wild sleeper, constantly rolling around. This causes problems when I have a lot of pain. I’ll wake up every time I move and never get a good night’s rest. The weighted blanket keeps me more in place and prevents me from waking up as much. I know some people swear by these, but in general, I like feeling like I can move – however, it is nice during a flare.

Turmeric Shots Before Bed

I like to take turmeric shots first thing in the morning to help my joint pain, but taking turmeric shots or drinking golden milk before bed also helps me to sleep (why? Can’t tell you – but I swear by it). Usually, the warm golden milk is best but sometimes I don’t want to drink the whole thing right before bed so a shot is easier. The recipe is found at the beginning of this guide.

Mental Health Tips:

If you can make it joyful, do it!

I needed a way to stay warm on our walks every day. When my husband and I go on walks we typically play Pokemon Go because he really likes it and it’s a good way to get us outside regularly. Why buy a regular sweatshirt when I could get Pokemon onesies! They are quite literally the warmest item of clothing we own and they’re so fun! It meets my needs and brings me joy, so that’s a win in my book. They also have heated sweatshirt blankets that you can get in all sorts of fun patterns. Some even have giant pockets for your pets!

Engage in Comfortable Hobbies

Choose hobbies that you can enjoy in a comfortable setting, such as reading, video games, or small crafts like hand sewing or painting. Fibromyalgia is mentally taxing, and having something to look forward to doing while you’re comfy is incredibly important. If you don’t know what you’d enjoy, think back to what you liked to do as a child and start there. Did you play video games as a kid? Try playing them again! Do you like to color? Get a fun coloring book or try digital coloring. Really enjoyed a series of books as a kid, pick them back up again. Once you reconnect with what you used to love it can evolve into something you’d really like now.

Treat Yourself

Indulge in little treats or crafts that bring joy. It’s essential to find moments of happiness amidst the challenges of fibromyalgia. I have a wish list I always add to, and when I flare up I get something off the list to make life a little more enjoyable. When you don’t feel good it’s ok to slow down and take care of yourself, physically and mentally. Just because you feel sick doesn’t mean you don’t deserve treats.

Build a Support System

Having a supportive network is crucial. Be fully honest with your support system about your needs and challenges. I know it can be really difficult to build a support system if you don’t already have one, but you can connect online with people who understand you. If you have people in your life already you may have to sort out who is supportive and who is not. It’s okay to prioritize those who are in your corner and take you seriously and distance yourself from people who don’t take you seriously and make you feel like you’re faking it. I promise that if you’re honest you will find people who will support you even if they don’t understand your pain.

Learn to Say No and Wait to Make Plans

Recognize your limitations and be willing to say no or delay plans until you feel up to them. I’m a chronic people pleaser and I’ve had to learn to respect my limits and say no to activities. Even if the activity seems simple enough it can still be too much. I’ve taken to the rule where I don’t make plans until the day before or the day of so I know if I’ll have the energy. I don’t make plans that are expensive and nonrefundable until I know I’ll have the energy for it.

Accepting the Use of Mobility Aids

Using mobility aids when needed is a sign of self-care and acceptance of your body’s needs. I know it can be tough to admit, but if a mobility aid helps you get a walk-in, that’s a win. Mobility aids are also helpful on days when you aren’t in a ton of pain but prevent you from reaching fatigue, overdoing it and flaring up again. You may opt for a walking cane, or a walker with a seat so you can take breaks when you need them. It’s never too much to do what your body needs.

Lifestyle Changes:

Regular Baths with Epsom Salts

Epsom salt baths can provide relief from muscle pain and promote relaxation. Incorporate them into your routine for a soothing experience. I try to take a bath or sit in a hot tube a couple of times a week to help relax my muscles.

Lymphatic Massages

I honestly wasn’t too sure about them and thought it would be too painful with my flaring fibromyalgia, but lymphatic massages consist of a very light touch that helps your body circulate better. After I got mine I immediately felt less pressure on my knees and could walk much better. Even my husband noticed that my legs looked smaller from the reduced swelling. I recommend finding a local massage school where older students can do this for you. I only spent $60 on an hour-long lymphatic massage at a school near me. You can also follow a youtube video to do it yourself, but going once can be helpful to understand what kind of pressure you should be applying.

Have Groceries Delivered or Use Pickup Services

Sometimes, you just gotta find easier ways to do things and make your life easier. I started having a hard time grocery shopping. I didn’t have the energy and my body hurt too much to do it. So I started having my groceries delivered. Because $5-$15 for delivery is worth it for me not to be in pain or flare up just from grocery shopping. You can also do pickup services to cut out the energy of shopping but still save on delivery costs. You could also decide on other tasks to hire out for. Maybe a laundry pickup and wash service is something that would be worth it for you, or a cleaning service. I know it’s easy to think the money for a service isn’t worth it because you “should” be able to do it, but remembering that you really can’t do it all is ok.

Gentle Movement – Water Aerobics, Yoga, Pilates

When it comes to movements I used to enjoy weight lifting and high energy cardio. However, now with more active fibromyalgia, I respond so much better to more gentle movements. I really enjoy going to water aerobics, yoga, pilates, taking slow walks, etc. I have a gym membership for some of these classes, but you can easily watch and follow workouts for yoga and pilates so you can do what you can without fatiguing yourself.

Wear Layers

Again, I really struggle to regulate my temperature, so I’ll wear layers that I can adjust without having to get up and change my outfit. I’ll keep socks and sweatshirts on or near me. When I go out I’ll wear a cool temperature outfit layered with a warmer outfit so I can adjust wherever I am. I do have to have my partner let me know when my hands or feet are getting cold because I literally can’t tell.

Enjoy Hot Coffee, Drinks, and Meals

Warm beverages and meals can provide comfort and contribute to relaxation. I try to have hot tea or coffee to help relax my muscles in the morning. I’ll also opt for hot meals, soup, or broth-based meals when I’m flaring to help warm me up. I really like these bone broth packs. Normally I make my own bone broth but having these on hand is nice to just throw in water and heat up when I need something warm or when my stomach is upset. Sometimes I’ll even sprinkle in some ginger, turmeric, and black pepper for the added anti-inflammation boost.

Plan Buffer Rest Days

Schedule rest days before or after significant events to allow your body the time it needs to recover. When we take a trip I know I need an extra day of PTO to recover. I also try to only plan one big event on a weekend. So if I’m going out on Saturday then I have no plans on Sunday. This allows me to respond to my body and not stress about falling behind or missing events because of a flare-up or sore muscles.

Conclusion:

I hope this comprehensive guide serves as a valuable resource for you. I’ll continue to update this article as I find more things helpful. Tailor these strategies to suit your unique needs, and remember, with the right tools and support, managing fibromyalgia becomes a more manageable journey. I’d love if you share your own insights and recommendations in the comments—let’s continue supporting each other!