11 tips for coping with Fibromyalgia

Greetings Fibromites! And, those suffering from other than Fibromyalgia chronic pain that are looking for coping skills. There are things I’ve learned to do over the years that helped me adapt my life to living with chronic pain from Fibromyalgia, Myofascial Pain Syndrome, TMJ and chronic Costochondritis. I also have Narcolepsy and several other disorders that compound the symptoms of the pain disorders. I’m not always under control but these tips have helped me get a lot more relief than before I incorporated them and doing them helps me keep going beyond coping with chronic pain and exhaustion:

1. Stay warm. If you’re a person who overheats and is warm all the time, you can skip to the next tip. Years ago I noticed cold anything aggravated my trigger points and skin something awful – If this is your problem too, here are some further tips:

Radiating Heat Dish

Our bulldog loves this as much as we do. There’s something comforting about radiating heat.

A) Get a space heater for your bathroom for when you shower and/or get dressed. Dry yourself before you get out of the tub/shower and into the room. A lot of folks enjoy the zing they get stepping out of a shower and letting the cool air hit their skin but, it makes my triggers seize and my skin aches as though it shrunk. For this reason I don’t swim or do hot tubs either. If you also have Sjogren’s, consider putting on some body oil before you get out of the shower. I use coconut oil (but don’t let it go down the drain because it can clog it, especially if it’s cold where you are.)

King size heat blanket

My king size Sunbeam heat blanket soothes my morning aches and keeps me warm enough to sit outside no matter the season.

B) Spend the first hour of your day under a heating blanket. If you don’t have the luxury of an hour, take what you can get, and consider getting up earlier. A few years ago my hubby got me a twin size electric blanket to use outside in the morning. It didn’t take long to realize how comforting it was as I cried from the pain of simply waking up. Like a long warm hug, it sunk in deep and loosened up a lot of my widespread body pain. Within a few months I was getting up even earlier just so I had time to sink into the toasty goodness. Last year hubby upgraded me to a King size electric blanket, it’s quite decadent and really, really helps.

Staying Cool

This was taken on a high pain day when the temperatures were also high. I’m wearing my Heat 32 Cool dress, lightweight scarf, braids, a hat and slip on shoes. Functional fashion.

C) Wear a lightweight scarf every day. Fashion statement? No lol, it’s actually functional. Living in LA the weather changes from cold to hot from morning to night, and entering the heavily air conditioned stores, offices, gas stations, from the heat is a drastic temperature change. With a scarf on it doesn’t matter if I’m wearing a tank top because I can cover my shoulder, neck and even bicep trigger points. Shivering is the absolute worst thing for me. Another reason I wear the scarf is that I stopped wearing a bra seven years ago. Granted all my bras were wonder bras… as they wondered where the boobs were… ba dum bump; A lot of women feel they can’t go without a bra because they are too well endowed, and I get that, but consider taking it off whenever you can. Thanks to chronic Costochondritis, my chest almost always feels bruised to the touch just under my breasts, so I go without a bra and the scarf does double duty, keeping me warm and helping me stay discreet.

 

I learned a new term this week, “coat hanger pain.” At first, I thought it was pain from being beaten with a coat hanger, which I can also relate to ;), but it’s talking about the neck and shoulders area where your coat would hang on a hanger. There, and my lower back, jockey for position with my biceps to see who can hurt the most but the coat hanger pain is the one I’m always most conscious of, because I’m almost always moving that area.

Fibromites can't handle touch

People crave touch, and I love cuddling with my hubby but if you touch me in my coat hanger pain area, I’m probably going to cry…

2. Communicate your needs to people, even if they seem antisocial or weird; your needs I mean, not the people ;). My worst triggers are in my neck/shoulders. Often people try to be kind and massage my neck or, even just approach with a gentle greeting touch. Unfortunately, it often just takes an unexpected touch to make me flinch, and flinching leads to seizing. Communicate with the people closest to you how to, and how not to, touch you, if at all.

This was especially important with my kids when they were little because they wanted to jump and hang on me. It’s so hard, with little ones, when you’re cuddling in bed for a story and your baby’s head is resting somewhere that hurts. If I couldn’t get comfy I would use a pillow barrier, always making sure to tell them it was because of the pain and not them.

I get a lot of referred pain, and skin pain, from the MPS. My whole arm/leg/back can be fine except one spot that moves around, fun wow. If someone is rubbing my arm and brushes that spot, it feels like they are crunching broken glass into the area. It’s hard but, I’ve learned to just point out the area and say, “avoid this space” and people do. Amazing ;-). Communicate!!! NOTE: the feeling that I had broken glass on my skin has significantly been reduced since going on autoimmune paleo and turmeric root juice but, I do still get it now and again. Dietary changes that you incorporate into your treatment plan are not cures, they just help.

Fibromites are fragile

We’re not made of glass but, if we insist people treat us that way, we’re less likely to break from their physical interactions with us.

3. Massage. If you get massage and feel good after, great, this bit is not for you, skip to the next tip. If the massages you get hurt for days after… communicate! Any kind of extreme pressure, or shiatsu type massage, messes me up for weeks. When I get a massage, whether an in-the-chair massage at the mall or an expensive spa, I establish a communication where if I tap my shoulder, I’m telling them it hurts and they ease off. Hissing also works but it tends to take away from the massage ;-). The risk in this is that if you fall asleep you can’t communicate, so bear that in mind before you start.

If you can afford a professional masseur, look for someone who also does Reiki. Whether you believe in Reiki or not, these masseurs tend to be more gentle, in my limited experience. If it’s a mate, friend, etc., teach them how you like to be touched. I like a sensual massage, just gentle skin rubbing, seems to calm the savage beast that is my pain. And never sit silent when it hurts. Just don’t do it.

Cuddle daily, if possible

Cuddling literally kills depression, relieves anxiety and strengthens the immune system. It’s also my favorite self care ‘medicine.’

4. Intimacy. In all forms. Love is very powerful medicine. Be it loving your family, friends, extending kindness to strangers, sex, sex and, did I mention sex? Kissing, or I’d go as far to say making out. Intimacy produces endorphins and euphoria in many cases. Take every good feeling you can get.

If you have a partner, consider scheduling cuddle time. Cuddling is very underrated. My husband and I cuddle three times a day, even when we’re mad at each other. Something about being there, with each other, for each other, makes starting the day (after work, and ending the day) very different. I get up early, take care of my body’s needs and then go back to cuddle him before he wakes up. Thirty minutes morning, afternoon and before bed, which often leads to sex, which is very high in endorphins and feel good stuff. If you’re physically incapable of having sex, feel free to skip to the next number. If you have pain and just don’t “feel like” having sex, consider trying anyway. I never really “feel like” doing much of anything but, when I try, sometimes I find whatever I’m doing is a nice distraction from my pain. In fact, most of the time. I never regret trying, even if I find that no, right now isn’t working and we have to stop. Getting past that initial “meh” feeling makes all the difference and, usually, leaves me very glad I tried. Click to read 6 health benefits of cuddling from Women’s Health Magazine http://www.womenshealthmag.com/sex-and-love/benefits-of-cuddling/it-strengthens-your-bond

Get a good pillow

I love my tempurpedic pillow. Most of the time I sleep on the low side, but there are time where flipping it around and sleeping on the high side helps my neck/coat hanger pain

5. Get a good pillow. Buy as many as you have to to find one that works for you. Costco, and many other stores, will take pillows back! Just be sure to cover them because otherwise, yuck. My mom got me one of those Tempurpedic pillows, as a gift, and I can tell the difference when I sleep without it. Yes, I travel with pillow and blankie, I nap in my car every day… thanks narcolepsy, ya jerk. 😉 I even have a memory foam travel pillow. I calculated the other day I’ve napped over 10,950 days in a row… wow. I’m really good at it now lol.

Play around with your sleep position. Try a few days on your back, chart your progress; then a few days on your side, etc. to find what works best for your pain levels. I even know what degree of angle for my seat to use in my car naps to not aggravate my pain further.

Alternate exercise

Sitting or standing, moving your body in a way that helps is always the goal.

6. Stretch and meditate. Stretching is essential and meditating is challenging for people with narcolepsy, Zzzzzzz so I often do both at the same time. I do what I like to call Intrinsic Stretching <click here or on the image to read about it>. With the Myofascial Pain Syndrome, my sides ‘shrink’ in my neck area and my torso, and I get tight bands on either side.  As I stretch, it literally feels like if I push too much I will physically rip my body open. The skin and muscles are taut and burn like crazy as I stretch them. If I don’t stretch them out, it just gets worse and starts referring all over my body. My hands also get like that. In my youth I was a waitress, until my hand wouldn’t go back at that angle anymore. I splay out my fingers and you can see everything pulling through my fingers and palm, if I don’t stretch that out, they will ache every time I do it through the natural movements of living. Stretching is the best thing you can do for your fibro, I probably should have made it #1 but I wanted to get us warmed up and comfortable first ;0).

Pareidolia Meal Prep

Autoimmune Paleo seems like a punishment at first, but after the symptoms abate, you start looking at everything that’s not AIP as punishment, cuz you know your body will punish you if you eat it ;). If you like the food face, you can click on the pic to see more like that.

7. Play around with your diet. I know, everybody and their brother is on some kind of special diet and you might think it’s a waste of time. I did, for 40 years. I recommend playing around with cutting things out. Try a week without soda, or sugar, or processed food, or just wheat, or just nightshade vegetables, or just fast food and see what happens. Typically it’s 21 days to see a real difference so, if after a week you notice ANY difference (be sure to journal), keep trying for 14 days. If there’s a difference then, eliminate that food. If not, return it to your diet. Easy peasy. If you need some help staying motivated on an elimination type diet, I have a post about that: 11 tips for staying on an elimination type diet.

Turmeric root, ginger, cranberry and garlic.

My med cocktail. Turmeric root (pain), ginger (nausea), cranberry (urinary tract) and garlic (candida.) Click on pic for recipe post.

8. Try juicing turmeric root. Some people have success with the powdered spice, supplement or capsules but I can’t do any of those or my stomach revolts and my pain increases. Instead, I juice turmeric root in a blender, my recipe is here. Turmeric root juice took my pain upon waking from an 8/10 to a 2/3. I still have pain, and probably always will, but between the heat blanket and the turmeric root juice, I don’t have tears for breakfast every day anymore. NOTE: do not take turmeric if you are on a blood thinner or any meds that would be bad to take with a blood thinner. If you’re not sure, consult your doctor about the potential risks.

Cannibis balm for pain

Cannibis balm for Fibromyalgia pain relief. I try to only use this on my high pain days. I don’t use it regularly, because I lose things easily. For me, not being able to find my pain stick is more stressful than just coping with the pain.

9. Look into medical marijuana. Across the US (and other countries) medical marijuana is becoming legal and more easily accessible. If you absolutely refuse to consider medical marijuana for any reason, feel free to jump to the next number. As the nation argues over it’s benefits and foibles, the best thing you can do for yourself is simply learn about it. What is Sativa? What is Indica? What is the difference between THC and CBD? How else can you get it besides smoking it? How long does it last? I know all these answers to these questions and I will be doing a post about it eventually but, if you have questions, feel free to comment below. One thing I will say now, is that if you can get a medical marijuana card, get one – find a dispensary and go get a topical at the very least. THC mixed with shea butter. They don’t make you “high” and they can cut the top of the pain off trigger flares at the very least. Also, take heart in the knowledge that our government has had a medical marijuana program for 30 years (you can google it), our government also owns a patent on it. If there was no benefit, why bother? Just something to think about.

NSF Logo

The National Sleep Foundation is dedicated to improving health and well-being through sleep education and advocacy. Click on the image to learn more about Sleep Hygiene.

10. Give sleep hygiene a try. Sleep hygiene is something that’s recommended for people with narcolepsy but, good sleep is also incredibly important if you have pain disorders and, it’s often hard to achieve – because you’re in pain. At the very least – try going to sleep and getting up at the same times every day, including the weekends. This helps toward setting your circadian clock and makes waking and falling asleep easier. If you’re up at 5 am every morning, you tend to wake up at 5 am, even without an alarm. If you can’t sleep – cover your eyes, put on some headphones with instrumental or meditation music and try to keep your mind clear and rest. It’s not as good as sleep but it’s better for your pain than not resting.

Stay positive

“If you have a problem that can be fixed, then there is no use in worrying. If you have a problem that cannot be fixed, then there is no use in worrying.”
Buddhist proverb

11. Avoid negativity in all forms, as much as possible. The news, gossip, petty arguments, road rage, lamenting…they all suck the life from you and linger the more you think about them. It’s hard enough to cope with your body betraying you, don’t let your mind do it too. Think good things. Above all think, I may feel bad but I’ve felt worse (cuz you know you have), I’ll get through this; and then go distract yourself with something good. Not many of us get more than 100 years on this planet. It seems like a really long time, but it’s not. Don’t waste any of them being miserable. I promise you will not go to your deathbed thinking, “I wish I’d been more miserable.” If you need a place to start forcing negative thoughts from your mind, try this: http://goingbeyondcoping.com/happystuff/

If you have tips not mentioned, feel free to leave them in the comments so we can all benefit from them <3.

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Dawn Super

I have a multitude of disabling disorders and this site is about how I'm going beyond coping into thriving and loving my life.

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