My guest post author is not a trained medical health professional. Jade is a writer, a student of history, a fibro patient, and a cat mom. She shares her journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult your doctor before trying anything new.
Jade and I connected via Linkedin when she shared that she had recently learned that she was a HIGHLY SENSITIVE PERSON and that understanding helped her to finally understand why she had developed Fibromyalgia. In my search (the one anyone with a chronic illness tends to have), I, too, learned that there is such a thing as the HIGHLY SENSITIVE PERSON temperament which researchers have found is something 15-20% of the population is born with. When I then learned that my adverse childhood had actually impacted me way more than I realized, I came to not only understand why I had developed chronic illnesses such as Interstitial Cystitis and Fibromyalgia, but what I could do to live FULLY despite chronic pain and other chronic symptoms that had brought my life to a halt five years ago.
Please, join me in welcoming Jade Bald to the PFL community as she shares her story and insights.
I was never an experimenter with drugs, cigarettes and alcohol. It wasn’t a religious thing or because there’s substance addiction in the family, it simply didn’t appeal to me.
I mean hangovers? All that good feeling for a bad feeling afterward? I’ll pass, thanks. Not to mention the way booze has a drain on your wallet. Oh, and it alters your personality and sleep cycles, too.
I have already dealt with poor sleep, why on earth would I drink?
Besides, after learning about the horrendous effects these had on the body, I vowed never to touch the stuff. (I did try, however, a little bit of rose for my 30th and despite the wonderful taste, and how it helped a little with the pain I was experiencing, I didn’t feel too well the next morning).
On top of this, I lived a clean lifestyle. I was, in retrospect, on the verge of orthorexia (an obsession with clean eating) during my teens. I walked to school every day and went to a fitness class three times a week.
In addition to living a very clean lifestyle, there is no family history of chronic illness or issues of illness when I was growing up.
This is why I didn’t understand why I could develop a chronic illness like Fibromyalgia.
A Possible Clue
Three years ago, in early 2019, I learned I was a Highly Sensitive Person (HSP).
Learning this helped me to understand why I developed Fibromyalgia seven years ago. Being an HSP means, in scientific terms, I have sensory processing sensitivity (SPS).
Attributes of the Highly Sensitive Person (HSP):
HSPs tend to be overstimulated by drugs, caffeine, sharp scents, loud noises, etc. Of course, every HSP is different in what they can and can’t tolerate. Often, medicine has to be taken in lower doses and even titrated (slowly increased to prescription dosage) over a longer time that non-HSP.
HSPs tend to be more prone to burn out and to stress induced illnesses like FMS, CFS, IBS, etc.
HSPs are generally more sensitive to pain, both physical and emotional.
They take things very personally at times and this can make them rejection sensitive, especially if they did not have a secure attachment growing up.
HSPs have intense emotions. Where a non-HSP feel something from 1-5. For an HSP it’s more in the 6-10 region of a 1-10 scale of emotion.
HSPs feel more deeply the physical sensations of the body, meaning they have excellent interoception. In the article Introception: How We Understand Our Body’s Inner Sensations, the author Kim Armstrong states, “‘Brains didn’t evolve for rationality,” said Barrett. “They did not evolve for you to think or to perceive the world accurately. They didn’t even really evolve for you to see or hear or feel. Brains evolved to regulate a body so that it could move around the world efficiently.'” The HSP is constantly noticing how they feel.
HSPs tend to be creative, imaginative, and enjoy the arts, whether that’s fine art, music, or dramatic arts. They enjoy the company of animals and animals tend to enjoy their company! Many HSPs become vets, zookeepers/zoologists, or animal rights activists.
HSPs are conscientious, wanting to do what’s right ALL the time and wanting everything to be fair for everyone. They’re honest people, but because they are so honest, they expect others to be the same. Thus, they are seen as gullible, and some people take advantage of them.
HSPs tend to be perfectionists or have very high expectations of themselves to not mess-up. They have the “do it once and do it right” mindset.
HSPs are often thought to be introverted; however, there can be both introverts (70%) and extroverts (30%).
HSPs are often perfectionists or have very high expectations of themselves.
HSPs are both men and women.
HSPs prefer writing to speaking.
HSPs have a rich, complex inner world.
HSPs have interest & curiosity in many subjects. The famous phrase “jack of all trades, master of none” comes to mind. This is why many are teachers.
HSPs have a brain that won’t turn off (not necessarily due to anxiety), making sleep harder to obtain.
HSPs really need abundant sleep to function well. Whereas a non-HSP can get by with seven hours, an HSP should be getting eight or more hours. An HSP with fibromyalgia should be sleeping even more.
HSP is not a mental disorder. Although, given the right environment in childhood, having this trait can make you more vulnerable to mental and physical health issues. (Children with the trait who are raised in chaotic, abusive, traumatizing homes are far more likely to have both physical and mental health issues later on.) Also, the HSP trait is not linked to autism or ADHD. A lot of folks think it’s a milder form of these conditions, but as much as some traits overlap, like sensitivity to external stimuli or obsessions, it’s not the same thing.
HSPs finds small talk boring, and insignificant. They like deep topics and intelligent discussions. They would rather read books, watch documentaries, or listen to podcasts on important topics rather than listen to someone chatter on about shallow things. Non-HSPs may find them snobbish’, ‘aloof’, or even anti-social.
HSPs tend to be more reserved or serious; they prefer to observe and ‘warm up’ to novel people and situations.They may be noted by social scientists or psychologists to be inhibited types, who seem ‘shy’ compared to non-HSPs.
HSPs are often so overly concerned with others which can mean they are boundary-less. They often become people pleasers/codependents, and this in turn makes them prime targets for narcissists and emotionally toxic people. Not to mention, this biological lens that actually alienates them from themselves, focussing on others way too much, can make them run into compassion fatigue and burn out.
Childhood and the HSP
Learning that I was a Highly Sensitive Person helped me to better understand myself. The list above feels like I’ve been seen. Looking back on my childhood, I now understand why I was always drained by social activities, even as a child, among a whole host of other things found in the list above.
My mother, an Adult Child of an Alcoholic (ACOA), was emotionally immature and possibly narcissistic. She definitely had anxiety and anger issues, but who can blame her, after growing up in such an environment? I could sense her frustration.
I wondered is it me? Are you upset because of me?
I didn’t have the greatest childhood growing up: my dad cheats, mom divorces, and then dad dies a year later.
Then my mom decides to go back to school for criminal law, after working in geology for a decade. She was the exception to the rule- many ACOA’s have low intelligence levels. My mother earned four degrees, two in geology and two in criminal law. We moved many more times after she finished school. My childhood was a blur of houses, streets, rooms, and schools. I was bullied a lot because I was always the new kid and I had a slight stutter.
I was a nerd, but not by the high school social definition. I never felt I fit in with those my own age. I wasn’t into any groups and didn’t join clubs. I was solo most of the time because I wasn’t a Goth, a Prep, a Jock. or Ms. Popular. I now understand that my tendency to go it alone was actually my highly sensitive disposition looking to stay calm and safe. This I got from being in places like the library, bookstores, or the zoo. I also liked going to the beach, where I could listen to the waves roll in, see the sun glisten in the sky, and feel the hot sand underfoot. I liked the cry of gulls and the scent of the seafoam wafting through the air. In these environments, I used my senses to calm myself and inspire joy and awe deep within.
So discovering this all made sense as to why I would develop Fibromyalgia in my early 20s. My energy tank had gone down to zero with all that stress, and I was paying for it way too early.
Speaking with Jade, I identified with much of her story. While I developed Fibromyalgia later in life (age 54), I’ve recently realized that I am an HSP with complex trauma from childhood. The combination certainly led me to live all my life in the fight/flight/freeze/faun (without realizing it). As I have researched what it means to be an HSP (extroverted in my case), the knowledge has given me tools for how to heal.
If you identify with this post, know that being an HSP isn’t a negative. It’s just a way of being like any other. But understanding what it means can help you better understand what you need to heal.
Thank you for visiting my blog today. I am committing to posting once a week by Friday. However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.
As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.
Fibromyalgia Impact Tour Interview with Melissa Talwar
Today I had the wonderful experience of talking with Melissa Talwar of Support Fibromyalgia Network. She’s an inspiration in that she is relentlessly connecting Fibromyalgia Advocates to bring better understanding and better living with FM.
I was pretty nervous. Minutes before this, I realized the outlet that I had my charge cord plugged into was not powering my laptop, meaning it would shut down midway through our talk. Once I finagled the cord to the other plug by ripping it out of the cord ties I had it in, I clicked on the link with only a few minutes to show time (at 1pm EST). However, the link said my video and microphone wasn’t hooked up. Luckily, it dawned on me that to practice, I had used my computer camera, so turning it off allowed them to connect our video conference link. Whew!
May the 4th Be With Us
Melissa made me feel at ease right away and I got totally into our talk. Her opening comment about May 4th and the force brought a smile to my face. I am passionate in sharing my journey and what I’ve learned. Melissa reinforced that it’s important that we do this. I can’t wait for 5/11/2021 when I get to talk to a state representative via Zoom to advocate for awareness and changes at the government level; this is organized my Melissa and her organization. I’ll keep Padme in mind as I share my story.
The video is 46 minutes in length. We cover a lot in that time, but for me the time flew. Then, after, Melissa and I talked for another hour. Feeling invigorated by the connection and renewal in my purpose. Thank you, Melissa.
As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.
Once you get a diagnosis of fibromyalgia, it can be so confusing as to what direction to go when it comes to managing your health and trying to live your life as FULLY as possible. These bloggers from the Fibro Blogger Directory share their own experiences of living with fibromyalgia and the issues and comorbid conditions that come along for the ride.
Personally, I have learned so much from these people. What works for one doesn’t always work for another, however, I have found many ideas to try (that felt right for my body and needs). Thanks to those that have shared their own journeys because you have made my own journey much better much faster than if I had just followed my health team’s directions.
20 Years of Self-Experiment
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 whatever 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, hay fever, and other symptoms. I also take magnesium every night to relax my muscles, and find if I forget to do this, I have muscle cramps and twitches. From Lee Good, who is discovering what works to help Fibromyalgia at Fibro Fileshttps://fibrofiles.blogspot.com/.
4 Alternative Fibromyalgia Treatements
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!
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 realize 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. From Glenys @ https://sacrificialhomebody.blogspot.com
My Preferred Prescription 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.
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. From Mandy @ https://www.mandyandmichele.com/
Top 3 Tips for Managing Fibromyalgia
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.Visit The Disabled Diva’s Blog to learn more about how manages life with fibromyalgia here with Cynthia @ https://thedisableddivablog.com/fibromyalgia/
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.
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:
Minimize stress in your life
Work/life balance is key
Say no and don’t feel bad about it
Have a hot bath
Create every day
Go for a walk
Fighting fibro fog? List it!
Nothing compares to you OR anyone else for that matter
Sweet, sweet sleep
Talk about your life with fibromyalgia
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. From Carrie @ https://www.myseveralworlds.com/…/my-top-tips-for…/, the link her full article.
What Works for Me Might Help You, too
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 an 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. From Bettina @ https://bettinabier.com/category/fibro/
Everyone is at a Different Level
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:
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
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.
Meditation/relaxation- I think stress reduction and management is pretty important for us. I do meditation every morning and relaxation breathing everyday, 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 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.
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.
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.
Don’t give up on yourself. You have survived 100% of your bad days so far. Some days you just can’t be 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 From Bethan @ https://hellofibroblog.com/
Sleep Routine/Self-Care: 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 not going to bed time yet; 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 I can find that 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.
Nature: 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.
Time-Saving: 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.
Fibromyalgia comes with a wide range of different symptoms which are often challenging to manage. In this post, Alisha from the Invisible F offers three of her top tips for living with fibromyalgia. Read here: https://theinvisiblef.com/…/my-three-top-tips-for…/
Fibro Doesn’t Have Me
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. 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 stationary 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.
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:
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).
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 FM 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.
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 fibromyalgia, I am finally doing the work to be my authentic self.
Do you have any helpful tips or resources you would like to add? Any questions for our Fibro Bloggers to answer? (Please, only sincere comments. Do not try to sell anything. I will delete any spammy type comments.)
Thank you for visiting my blog today. However, as you know, my new normal means that sometimes I have to listen to my body and am not able to follow through as planned. Thank you for your understanding.
Sharing is caring- at least, that’s what my granddaughter says;)
Alison Hayes is one of the wonderful people I’ve met through groups like Chronic Illness Social Pod which is a group of bloggers who live with chronic illness and write to promote awareness and understanding for what it’s like to live with chronic illness. Through helping one another to get their message out, we read each other’s posts and get to know one another quite quickly. Through that connection, friendships grow.
I have come to admire Alison at first due to the wealth of knowledge she shares with the focus of THRIVING WHILE DISABLED, but beyond that, I’ve come to know her kind soul who loves to go for walks in nature and help others in whatever way she is able. For those of us living with chronic pain, often things can feel just too difficult to wade through.
As I am considering applying for disability due to struggling to work on any consistent basis. (While I am officially retired, I hadn’t planned on retiring just yet, and on retiring, I had also planned to work part-time to earn extra income until I turn 65.) However, the process of applying seems pretty daunting.
After learning about Alison’s studies in the US welfare system and the experience she has gathered by navigating the labyrinth both for herself and for her partner, Al after his accidents, I approached her to share the coaching services that she offers. Her goal is to help others thrive by getting the support they need without feeling overwhelmed or degraded through the process.
I hope that you will find some helpful information from what she shares. I encourage you to explore the links to her posts that she’s provided for the topics you would like more information. They offer great insight and resources.
Living with Chronic Pain and Disability
I know that chronic pain can be debilitating. Until my migraines started last year, I didn’t have much personal experience with it. I have spent the last 20 years living with Functional Neurological Disorder(FND), which in my case primarily expresses as muscle jerks and movement symptoms.
My partner’s chronic pain journey had started in 2012 when he was in a car accident and was left with a Traumatic Brain Injury (TBI). To this day he has a headache at all times, though he doesn’t always notice it anymore. In 2017, he slipped and shattered his acetabulum(the hip joint and largest bone in the body), so that residual pain tends to be worse.
Basically, if he notices his headache, that usually means his hip pain is relatively low.
I know that pain can make it more difficult to concentrate, to make decisions, to think things through clearly.
It makes it harder to think ahead and harder to find joy. It often leads to sleep issues and other challenges.
I can’t solve pain, but I am able to do is support you in managing those major life decisions that can be so hard for people who aren’t dealing with chronic illness to understand.
I created my blog, Thriving While Disabled, with a goal of helping other disabled people to create and live their best possible lives by solving the problems that most interfere with their quality of life – and to help folks regain control over as much of their lives as possible.
A Partner in Getting the Medical Care You Need
One set of experiences that I offer a lot of guidance on is managing your own medical care. While most of us have learned, painfully, through trial and error, about our conditions, diagnosis, and treatment, I offer up my experiences to guide folks towards a path of better primary care physicians, better treatment, and more accurate diagnoses.
I think it’s vital to find doctors you can actually work with, and make sure that your doctor gets the most accurate picture possible. To do that, you need to understand your condition, testing, and treatment well enough that you know when you need to get a second opinion, and when your doctor is really able to help you.
I’m also now offering coaching services for people on this front – so if you’re dealing with a complex medical choice or are struggling with finding the right specialists, or otherwise need somebody slightly more objective who can help you through a really challenging medical situation – I’m available to help you!
I also know that another big issue with more complex or severe medical issues, is that we often find ourselves also facing economic hardship and often may lose employment.
I have been living on Social Security Disability Insurance for the past 16 years, and know the good, bad and ugly about it.
I’ve done the research and gathered knowledge over the years, and I feel confident enough in my understanding of those programs and the social welfare system for low-income folks that I’m happy to help guide others towards finding and applying for the right programs for them.
The decision to apply for disability coverage isn’t an easy one, and the process is long and can be tiring.
However, the comfort of having a reliable and steady source of income can be huge, and if you aren’t able to work regularly, and that is unlikely to improve, it may be worth the time and effort to find a new reliable source of income for yourself.
Having started two businesses myself, I’m also comfortable helping others to understand how to work while maintaining their benefits, whether it is for an employer or self-employment.
Pain management is important, and being able to get the appropriate medication and treatment are an important part of that. I want to help you make sure that if you’re eligible for the support, you get it. Whether it’s health insurance, like Medicare or Medicaid, food, heating and utility assistance, or the financial supports of Supplemental Security Income or Social Security Disability Insurance, I want to help you find and get the supports you need so that you have that bit less stress in your life.
Many of us have stress-related conditions, which means that as our stress levels increase, so do our symptoms. I want to help others reduce their stress, so that it’s easier to live a better life.
Besides the stress of medical care and the stress of survival, I know that many of us struggle with mindset, attitude and expectations. I’ve found that the more mindful I am, the better I can manage my stresses.
I do what I can to exercise, eat better, meditate regularly and focus on consistently taking good care of myself.
I want to help others do the same.
I know that we live in a world full of accessibility challenges, so much of it is a struggle, but we all deserve to be happy.
You deserve to find or create a quality life for yourself. I want you to succeed and if I can help you – it’s my pleasure to do so!
My coaching and online courses are all created with protecting your mental health firmly in mind, so expect that any course I teach will include references to mental health or self-care. I hope you are able to take that next step in your life(whatever it might be for you), to get one step closer to thriving!