Our top recommendations for coping with fibromyalgia

May is Fibromyalgia Awareness Month and many of our fibro bloggers have joined in to help others by sharing their top three fibromyalgia coping tips. If you like their fibro recommendations you may like to follow the link to their sites included with their names. 

Glenys Hicks from Sacrificial Homebody

In trying to come to terms with my sore hands and lack of energy with my fibromyalgia, I have come up with some new tricks to help in cooking meals.

1. I purchase convenience foods available online and I have found some things that I don’t have to peel or chop. My freezer has diced onions, pumpkin pieces, diced carrots, broccoli and florets of cauliflower as well as pre-cut chicken, stewing steak that has been diced and diced bell peppers.
2. Getting my meat already diced and my vegetables pre-cut and peeled is more expensive, but if it means that we can still enjoy nutritious meals, then so be it.
3. I am grateful for anything which will save my hands, like my electric can opener and my dryer. You don’t realise how hard pegging something on is until your hands are too weak to push on the pegs.

Mandy Farmer from Mandy and Michele

My Preferred Medication

• I have been using the fully allowed amount of the drug Savella for fibromyalgia for 9 years now. Savella is the only medication created expressly for the pain of fibromyalgia. It works a lot like an anti-depressant, but it is not used for that purpose. It is a relatively new drug and expensive. Most insurance companies are reluctant to fill prescriptions without your doctor’s intervention. They want you to try medications such as Lyrica and Cymbalta first, which I have done with no help.
• After six months, I finally went to Mayo Clinic and was diagnosed with Central Sensitivity Syndrome with indications of fibromyalgia, myofascial pain syndrome, and chronic pain syndrome. This is when they prescribed the Savella and I have been on it ever since.
  
  

Cynthia Covert from The Disabled Diva’s Blog

I was diagnosed with fibromyalgia in 2003 and lived with the pain and symptoms longer; I have experienced life with this condition from all extremes. Out of all of my chronic illnesses, this is the one that is the best managed. But it wasn’t always this way. The first thirteen years after my diagnosis was the worst. They would have been a lot less painful had I knew what I know now. The following are my top three tips for managing fibromyalgia:

1. Accept that your life will change. Even with a low pain level, changes are necessary. Not because a lower pain level requires you to do things differently to reduce pain, but to keep your pain level at that level. Many patients find pacing difficult because they continue to live at the pace they did before chronic pain and not the speed their life with fibro needs.
2. Listen to your body. If your body is screaming in pain, take a break. Pushing through pain will result in a full-blown flare. Taking longer to do things may feel like a punishment at first. But when you realize that anything you can do to decrease the chance of triggering a flare is winning, the easier it is to accept.
3. Be open to trying new things. This may mean allowing yourself to use a mobility aid to stay out as long as you used to. It is to understand that mobility aids do not have age requirements. No one is too old or young to need one. The same goes for alternative forms of pain management. Nobody’s pain management plan will be the same. What works for me might not work for you. Remember, there is no cure for fibromyalgia, but there are many things we can do and try to make our lives less painful.

Shelley Clark Smith from Chronic Mom

1. Learn to trust yourself. The diagnosis of Fibromyalgia has a lot of baggage. Medical professionals, doctors, friends, and family, they’ll all question your diagnosis and your health at some point. Stay confident in yourself and who you are. Don’t let anyone convince you you’re not trying hard enough or that you’re imagining things. No one wants pain and fatigue.
2. Listen to your body. You know your body more than anyone else does. You know that you’re not faking or exaggerating what’s happening to you. If your body tells you something, listen to it. Practice pacing and give yourself rest breaks. The more you push your body, the worse the crash. You’ll get better at managing your body’s needs over time. You’ll still mess up occasionally, or decide the crash is worth it, and that’s okay too.
3. Remember that there are many different options for treatment, and no one responds the same. Some people do well with natural treatments, others need a combination of natural and medical. It’s okay to need medication, don’t let anyone shame you for doing so. You have to find what works for you. I have tried many different medications, and the ones that worked were all off-label. Don’t give up on trying new things, it takes a while to find the right fit.

Katie Clark from Pain FULLY Living

It’s hard to give advice for how to best treat fibromyalgia because we are all so different. However, I share my story just in case they might glean something from my experience.

I fully believe that I have made much faster and better progress since fibromyalgia laid me low and forced me to have to resign from my teaching career after 32-years due to finding quality information from others who have shared their journey living with fibromyalgia (This is, in fact, how I came to join Fibro Blogger Directory). In the last 3-years, this is what I know to be true:

1. Listen to yourself; follow your intuition. I can’t tell you how often I have doubted myself. For years, prior to my actual diagnosis, I didn’t push for answers to what I now understand to be chronic pain. Even when I was at my worst (barely functioning at school and then coming home to do nothing but lay in my bed, feeling like I couldn’t move), I struggled to go to the doctor. Luckily, at the urging of my children, I finally did. Now, I’m much better at listening to my gut (which has led me to various positive treatments) and to my body (which guides my moment to moment actions).
2. Educate yourself. With FM, you will probably end up knowing more about it than your caretakers. I’m a teacher. Learning is a passion of mine. Learning about fibro central sensitization syndrome and about brain plasticity has given me the focus for my wellness journey: rewiring my brain by calming down my amped-up nervous system.
3. Be gentle and loving with yourself. I’ve struggled with this. I’ve lived 53 years with basically ignoring myself. I’ve forced myself to always do what was expected. Even in yoga (which I started 20 years ago), I would push myself to injury. It’s taken a lot for me to learn how to be gentle, how to listen to myself, and how to be a loving force for myself. But through this journey with fibro, I am finally doing the work to be my authentic self.

Sue Ingebretson from Rebuilding Wellness

Quick Service Tips:

1. Drink enough water to adequately hydrate the body.
2. Use topical/internal products for temporary/supplemental relief (herbal remedies, oils, rubs, supplements, etc.
3. Reduce your body’s natural tendency to stay stuck in the fight/flight/freeze response with a deep breathing RESET  (help to restore/balance your body’s autonomic nervous system – ANS – response)
4. Get outside. Walk in nature. Move your body in ways that feel comfortable and healing to you – body movement, fitness, detoxification, etc.

It’s important to note that the frequent application of these tips CAN have both short-term and longer-lasting healing benefits.

Carrie Kellenberger from My Several Worlds

As someone who has been living with fibromyalgia officially since 2014 and unofficially for many years before that, I’ve discovered some great tips for living with fibromyalgia. I’d like to share my tips with you today since they have. proved to be helpful to patients who are new to fibro and for veteran patients who might have something to add.
In recognition of World Fibromyalgia Day on May 12, 2021, here are my top tips for living with fibromyalgia:

1. Minimize stress in your life
2. Work/life balance is key
3. Say no and don’t feel bad about it

Out of all the advice that I’ve seen and tried for living well with fibromyalgia, here is a very well known fact amongst fibromyalgia advocates that doctors fail to tell many new patients.

Living well with fibromyalgia requires a complete lifestyle change and lifestyle management.

If only they’d address this as soon as we receive our diagnosis!

Bettina Bier from bettinabier.com

I can only tell you what works for me and maybe it will help you too.

1. Try things where you think they could help you. Even if it is not for “fibro”. I have a cream that I have been using since my childhood for chronic bronchitis. It also helps me with tension/pain in combination with a heating blanket/pillow.
2. My pain creams, pain oils, exercises and my accupressure mat. I have a good physiotherapist who teaches me what I can do. Functional training in warm water also helps me. If something doesn’t help you that helps others, don’t give up. We are all different, for some this helps and for others that.
3. Find something to distract yourself from everything. For me it’s painting, watching my favorite comedians & favorite shows. Music is good for my soul, a walk in nature does wonders for me. Well, I have a dog, so it’s time to go outside.

Nikki Albert from Brainless Blogger

It is difficult to recommend anything for someone with fibromyalgia since everyone is at a different level. And that is also why I don’t recommend any specific medication or alternative treatment since everyone responds so differently to any of those. So take these as suggestions that may or may not help you.

1. Exercise- Mild/moderate exercise is one of my fibromyalgia recommendations. Mostly because the lack of exercise leads to muscle de-conditioning and more pain. Something I experienced when my vertigo was unmanaged and I couldn’t function. Also, the lack of movement increased pain. But then muscle weakness also increased pain. Prior to that, mild/moderate exercise always helped me with fatigue/fibro fog and mood management. Now I find it basic maintenance for keeping my muscles active.
2. Basic supplements- There are some essential supplements I take. Magnesium (with calcium and D), B-complex, Rhodiola (for fatigue), fish oils. These are for stress, inflammation and magnesium is specifically for fibromyalgia.
3. Meditation/relaxation breathing- I think stress reduction and management is pretty important for us. I do meditation every morning and relaxation breathing a couple times a day, as needed.

Bethan Jones from Hello Fibro Blog

I have been diagnosed with fibromyalgia for 3 years but my symptoms started long before that when I was 13 years old. I have learnt a lot about myself and my health over time and found some really important things that have helped me cope.

1. Listen to your body.
   I have always been one of those people who always says yes and doesn’t stop. I’ve always gone above and beyond but that is my biggest downfall. I’m slowly learning to listen to my body and stop when it tells me to.
2. Be honest.
   Be honest with yourself and with others about how you are feeling. I always felt guilty and carried on, hiding how I really felt, but it only made things worse. Now I speak up when I’m bad so others know I can’t carry on and they have gotten used to it and know when I need support.
3. Don’t give up on yourself.
   You have survived 100% of your bad days so far. Some days you just cant can’t positive and it just hurts too much. Don’t expect too much from yourself and just let it be. Better days will always be there. Focus on the little things and you’ll get through it.

Alisha Nurse from The Invisible F

Imagine if there was a single pill for all fibromyalgia symptoms! If only!
Fibromyalgia can be a complex condition to manage given the wide range of really different symptoms it presents. From chronic widespread pain and migraines to irritable bowel syndrome, fatigue and insomnia, this myriad of symptoms and how they affect us means there’s no one solution for every patient. No surprise how challenging it is managing this multi-tentacled beast!

Here are three of my top tips for living with fibromyalgia.

1. Get Turmeric Root In Your Diet: Long before turmeric tea was a fad, I grew up sipping milky cups of this tea when we needed a ‘cleanse’ but also consuming it often in our Indian-Trinidadian curries. Studies show that turmeric root is effective in treating inflammatory conditions like arthritis due to a property in it called curcumin. I can’t imagine coping without turmeric root.
2. Epsom Salt Baths: My Mama Claire swore by this. Now I do. The magnesium in Epsom salts, help alleviate pain and inflammation, and produces serotonin which helps us sleep and relax. My favourite brand now has epsom salts with lavender, jasmine and valerian. It’s heaven!
3. Be Your Biggest Advocate: I mean so many things by this. Listen to your body and what it needs each day. Rest as much as you need to but also find a reason to get out of bed to keep your muscles going. It’s a tricky thing not knowing how you’ll feel when you wake up. That’s why you can’t apply the same expectations that you would of a healthy person. So you have to listen to you. Find a support group. Eat natural and see what works for you. Hope, and don’t give up.

Mel Sandor from Looking For The Light

1. I am very disciplined about laying down at the same time every night. It’s not going to bed, it’s self-care time and time to unwind so when it’s time to go to sleep my mind is empty and ready. During this time, an hour to an hour and a half before bedtime I start to decompress. There is no sound, no phone, no media, no gadget, nothing to distract me at all. Our mind needs quiet time and most of us stay on our computers, phones, reading, doing something stimulating right at the time the body needs to wind down.
2. A great tip for the nature lover. I have multiple wind chimes around the house to remind me of nature even when I can’t go outside. There’s nothing like the sound of an unexpected chime to force me to take a minute and look out the window and soak in what nature has to offer from the kitchen window or back door. I also have several bird feeders and birdbaths to enjoy.
3. Meal Delivery 3 days a week, we just have to prepare the meals. It makes life so much easier, the time saved planning and grocery shopping is worth the extra cost. On Sundays, we cook a meal, and on the other days, I eat yogurt and fruit.

Cynthia Baughman from My Inspired Fibro Life

I have had fibromyalgia for over 20 years, and no longer take medication. I have found my life style changes have really helped reduce the flares and allow me tolerate the pain much better. Here are my top tips:

1. What you eat really does matter. I often say eat crap, feel like crap. I follow a Paleo/Mediterranean inspired diet that is gluten and dairy free, and low in sugar and processed food, and high in fruits and veggies. This helps me feel my best, avoid stomach issues, and reduce inflammatory responses in my body.
2. Movement is medicine. I cannot run, but I can walk. I cannot do cross-fit, but I can do pilates or yoga. Daily movement is important for my mind and body. I take daily walks to get outside, breathe fresh air, appreciate nature, and clear my head. I do yoga, pilates, or use a stationery bike to keep my muscles strong and flexible, to reduce stiffness, and to maintain my weight.
3. You can’t do everything, but you can do something. Pushing myself too hard often triggers a flare. I enjoy my walks, hikes, and gardening, all in moderation to avoid flares. And I give myself permission to rest and ask for help when needed.

Donna Gregory from Fed Up With Fatigue

1. Low-dose naltrexone (LDN) – LDN is one of the only pharmaceuticals that has ever improved my chronic pain and other symptoms. Based on small studies, LDN outperforms all three fibromyalgia medications approved by the FDA.
2. Infrared sauna – I’ve never regretted purchasing my infrared sauna. It helps immensely with that all-over achy feeling, and it’s heaven in the winter when it’s so cold that my bones hurt.
3. Magnesium – I use magnesium both topically and orally. Topically, it helps to reduce overall achiness, leg/foot cramps and restless legs. I also take a magnesium glycinate supplement, which improves all of the previously mentioned issues and keeps me regular!

Lee Good from Fibro Files

I can only talk about what works for me and my own symptoms with fibromyalgia and chronic pain. I have been experimenting, with myself, for over 20 years now and the following things are the key to reducing my fibro symptoms. Here are my top three tips for coping with Fibromyalgia in no particular order:

1. Hydrotherapy, which is physical therapy in warm water, has been extremely effective in helping me get all of the benefits of exercise including increasing muscle length and muscle strength and control and maintaining a certain level of fitness and improving my balance. Being in the warm water also turns down my pain.
2. Deep uninterrupted sleep reduces my pain and makes me a happier person all round. I do what ever I need to to get this sleep including having my own quiet, peaceful sleep haven, a regular bedtime and some quiet meditation before sleep.
3. Besides eating in a basically healthy way, which is based on the mediterranean diet, I find living dairy and gluten free really helps reduce joint pain, peripheral neuropathy, stomach pain, constipation, hayfever, and other symptoms. I also take magnesium every night to relax my muscles and find it I forget to do this I have muscle cramps and twitches.