May is Fibromyalgia Awarness Month and this is the best time to share tips from Fibro Bloggers around the world.
I will share the tips and also the links to the Websites from all the lovely Bloggers. Please check their websites and content and feel free to share all the links. Thanks
Here are my top tips
I can only tell you what works for me and maybe it will help you too.
Try things where you think they could help you. Even if it is not for “fibro”. I have an 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.
The other things that help me besides medication are my pain creams, pain oils, exercises and my Fakirmat. 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.
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.
If you like to write, you can write in a diary. Write the good things that happen bigger and in your favorite color in the journal and the rest regular. So you can later see that there are also good things and not everything is bad. This is good for the soul too.
I think it’s important to learn that you don’t have to have to feel guilty if you cancel something or can’t do something. Sometimes it´s okay just to breathe and to survive the day.
The top tips from Glenys are
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.
I purchase convenience foods available online and I have found some things that I don’t have to peel or chop.
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.
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. I no longer peel and chop and mash potatoes, but I use the frozen potato with butter added. It is worth the expense.
I have a jar of minced garlic so that I don’t have to peel the cloves. Our pantry has spaghetti, penne and rice that cooks in the microwave in 90 seconds. I use that because I no longer can hold the colander to drain it. Our fruit is canned.
I keep our butter in a dish in the pantry because I cannot hold the knife to cut through hard butter or to scrape it. My lemonades come in bottles because I cannot manage the pull rings and my tomato sauce is in an easy pour container.
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.
But one simply has to go on and like all good Sacrificial Home Keepers, I do. It just takes a bit more planning to keep at it when you are an old hand in need of new ones.
Here are the tips from Mandy
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.
From the start of my serious pain issues, I have tried several different drug possibilities. At first since we weren’t sure what was wrong the doctor tried a prednisone titration pack. But as soon as I started decreasing the steroid the pain returned. We tried Tramadol with little success. Then Cymbalta which did nothing for me. Neurontin was next but really had no effect. I continued on the large dose of prednisone and occasional Tramadol but I was still primarily unable to move without extreme pain.
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.
Link to her blog: https://www.mandyandmichele.com/preferred-medication-fibromyalgia (The link will not work until May 12th)
I also had the chance to Interview Mandy, if you like you can read it here.
Leeroy has also tips for you
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:
– 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.
– 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.
– 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.
Cynthia recommends the following:
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:
My first tip is to 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.
Tip two is to 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.
My final tip is to 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.
Link to her blog: https://thedisableddivablog.com/fibromyalgia/
These are the tips form Shelley
My #1 recommendation for living with fibromyalgia is learning 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.
Along with trusting yourself, 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.
Thirdly, 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.
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.
Link to her blog: https://painfullyliving.com/
Here are the tips from Carrie
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
4. Have a hot bath
5. Create every day
6. Go for a walk
7. Fighting fibro fog? List it!
8. Nothing compares to you OR anyone else for that matter
9. Sweet, sweet sleep
10. Talk about your life with fibromyalgia
11. Join a support group.
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! What would you add to this list of tips for lifestyle management with fibromyalgia? I’d love to hear from you!
The link to her blog:https://www.myseveralworlds.com/2021/04/22/my-top-tips-for-living-with-fibromyalgia
Tips from Nikki
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 the mild/moderate exercise always helped me with fatigue/fibro fog management. Now I find it basic maintenance for keeping my muscles active. Taking walks outside it a great one since it also gets us outside, so I like to do that. I also do some stretches and some stationary biking.
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. There are plenty people add to that but I just take those essentials.
3-Meditation/relaxation- I think stress reduction and management is pretty important for us. I do meditation every morning and relaxation breathing every day, as needed. Relaxing breath or 4-7-8 breathing is one I like a lot. It involves breathing in for 4 seconds, holding the breath for 7 seconds, and exhaling for 8 seconds. It can help with anxiety and help people sleep. I definitely find it can calm me down when my anxiety from pain gets high. I recommend the app Mayv to get anyone started on pain management strategies such as meditation and relaxation but also more.
I also had the chance to Interview Nikki, if you like you can read it here.
Bethan also has tips for you
I have been diagnosed with fibromyalgia for 3 years but my symptoms started long before that when I was 13 years old. I have learned 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.
Link to her blog: https://hellofibroblog.com/
Tips from Melinda
I include self-care in my sleep routine. I do other specific self-care tricks as I can but my nighttime routine is solid.
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. Sometimes I run the aromatherapy diffuser but can find it distracting some nights.
I slather myself down with my CBD and Aromatherapy lotion making sure to pay attention to all the areas where there’s pain. I let the smell of the lotion fill my nostrils as I lay there and de-junk my brain for the day.
At bedtime, I take my final meds and my mind is ready for sleep.
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.
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.
Here are the tips from Cynthia
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:
• 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.
• 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.
• 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.
I have fibromyalgia, it does not have me.
Link to her blog:https://photobaugh.com/2021/05/03/my-top-three-tips-for-fibromyalgia (The link will not work until May 10th)
Tips from Alisha
Here are three of my top tips for living with fibromyalgia.
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.
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!
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.
I also had the chance to Interview Alisha, if you like you can read it here.
I know all of us react differently, but these are the fibromyalgia treatments I’ve found most beneficial since my diagnosis in 2014:
• 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.
• Medical cannabis – I could not sleep without medical cannabis, and it’s been a huge lifesaver as I’ve struggled with chronic daily headaches. Does it eliminate the pain? No, not exactly. It just makes the pain more tolerable.
• 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.
• 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!
Link to her blog: https://fedupwithfatigue.com/
Tips from Sue
ONE: Drink enough water to adequately hydrate your body.
TWO: Use topical/internal products for temporary/supplemental relief (herbal remedies, oils, rubs, supplements, etc.).
THREE: 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)
FOUR: Get outside. Walk in nature. Move your body in ways that feel comfortable and healing to you – body movement, fitness, detoxification, etc.
Link to her blog: https://rebuildingwellness.com/top-tips-fibromyalgia/
Thanks for reading!
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