Living with Fibromyalgia is a delicate dance, which is why May’s Fibromyalgia Awareness Month is so important. The bloggers at the
Fibro Blogger Directory got together to provide the ultimate post for Fibromyalgia recommendations. Each blogger has a link with the rest of the blog post, so definitely head over to other blogs to read more.
#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 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.
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.
– 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.
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 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.
Mandy @ Mandy and Michelle Medications for Fibromyalgia
I have been using the full 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.
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.
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).
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.
Nikki @ The Brainless Blogger Stress reduction with fibromyalgia
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.
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.
Bethan @Hello Fibro Blog Diagnosis with Fibromyalgia
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.
You have survived 100% of your bad days so far. Some days you just 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.
As I thought about the tips I’d like to share, this old saying about getting what you want came to mind. It goes something like this:
You can have two out of the three: fast, good, and cheap. Take your pick.
You can have good and fast, but it won’t be cheap
You can have good and cheap, but it won’t be fast
You can have fast and cheap, but it won’t be good
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.
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.
I have had fibromyalgia for over 20 years, and no longer take medication. I have found my lifestyle changes have really helped reduce the flares and allow me to tolerate the pain much better.
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!
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.
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