Image of a smiling women with shoulder length white hair, blue eyes, wearing a blue green scarf over a green sweater

What’s Wrong With Me? Fibromyalgia Diagnosis-Part 1

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.

Me, in bed looking ill. The top of my head is covered with a cold, wet teal washcloth. I'm wearing glasses and hoody sweatshirt that says GRANDVILLE.

“This isn’t me,” I told my new general practitioner. I knew something was wrong, but no idea what. #fibromyalgia #newdiagnosis #wellnessjourney #ThisIsFibro

The First Signs of Fibromyalgia

Looking back from where I am now, I can see the signs that things in my body had been changing for quite a while before my final year of teaching and Fibromyalgia diagnosis.  But at my age (53 at the time), I knew that I was in perimenopause.  I knew to expect changes. Thanks to my partner teacher and good friend, I had preemptively read some books on menopause that she had recommended to find out what to expect.

Prior to all of this, I had had a diagnosis (and was being treated for) acid reflux. After a few years of prescription acid reflux medication, I even had the Nissen Procedure to help stop it. Also, I lived with Interstitial Cystitis (chronic pelvic Pain syndrome with urgency and incontenency. For over 20-years I had undergone treatment with prescription and OTC medication, aloe supplement, a few stints of pelvic floor physical therapy, numerous bladder instillations, and even a Botox injection procedure. All of which have brought minimal relief and no real change to my symptoms.

I often felt that If I could delete my midsection, I’d be golden. However, I was pretty used to living with pain. I sure wish my doctors had mentioned that living with chronic pain wasn’t a great thing and actually would develop engrained pain pathways in my central nervous system.

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Fibromyalgia Brought Me Down

In the spring of 2015, extreme fatigue, foggy brain, and high anxiety started. This I couldn’t just push through. So, I went to my doctors to find help.

Figuring it was hormonal, I went to visit my gynecologist who prescribed me a  patch of Estradiol  (.0375mg BIW) along with Progestin(QD). This did seem to work until the fall 2015. So, I went back with the same complaints. My gynecologist bumped up my medication to a .05 patch, adding in a vaginal Estrace cream (BIW). But because I was still experiencing increasing anxiety a month later, she put me on Lexapro (20mg QD). Again, this helped for a time. 

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Stressful School Year

The school year of 2017-18 was a rough one on several levels.  Our team of three teachers was cut to two. The class sizes for the group coming up had been at 19 or so. Being it was a really challenging group since arriving at our school in kindergarten, the size had helped.  However, with two, we were pushed to 30 per homeroom teacher, and each of us had to take on subjects we hadn’t taught previously.  If that had been all, I don’t think things would have gotten so bad.  However, serious life problems for me and my partner teacher kept hitting us one after another.

The final blow for me was when my partner teacher of 16years got reassigned to a middle school position the last day of school, June 2018.  While I was happy for her because this would fit much better with her life, it ended up leaving me deeply sad (a fact I didn’t fully register for quite a while). 

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Roving Pain That Wouldn’t Resolve

My husband retired that June.  For a celebration, we decided to make a trip we had wanted to do for a long time.  We drove out to California the week after school ended. That’s when the pain in my legs began.  It roved from leg to leg, mostly in the calves. I stretched and massaged endlessly, but it never lessened.

A month later, back at home, the pain in my legs was taking up much of my attention.  Nothing I did would relieve the deep, intense aching. The pain would move from my hips to my calves sometimes the right side more intensely and then the left. This shift didn’t seem to correspond to any changes in my daily habits or activities. 

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The End of My 32-year Teaching Career

By the time school started up again in August 2018, the leg and hip pain was just a way of life. The district had put us back to three sections, meaning I had two new teachers to “train”. It was a really bumpy transition (to say the least) which put a lot of strain on me.

That’s when I noticed a shift in the pain. The deep ache and throbbing started to show up intensely in my shoulders, neck, and chest as well as in the legs as before. My legs still ached all the time, but not as noticeable when compared to what I was experiencing in my upper body.

By the end of September 2018, the intense pain (level 6-7) was roving all over: left to right side of my body and from the upper to lower part of my body. Again, this seemed to have no explainable reason. In addition to the pain, my brain fog was intense. This led me to panic about teaching, something that was basically second-hand nature was now foreign and stymied.


Kneading Need
Katie Clark

Sitting across from him, I watch his question mark gaze
follow my own fingers kneading my arm like bread dough.

Deep within the fibers of my body is an aching-
the famished maw of need.

In the shower, I see purple and brown
finger painted bruises on my calves,
thighs, forearms...chest from
kneading the angry gnawing
with no respite.

From foot to skull, silent shouts seep.
Bone to muscle to flesh-
exposing the desperate deprivation,
demanding to be satisfied.

How funny it is coming to love her-
pain and all.
To understand that she is just asking
for what she has needed all along.

It Became Evident That I Wasn’t Myself

The pain kept me awake at night. During the day, I had a desperate need to massage the areas of pain which was all over my body.

People around me definitely started to notice. At staff meetings, I’d notice someone watching my arm. When I looked down, I realized that I was frenetically massaging it.

I became extremely emotional and anxious 24/7.  When I got home from school at night, I’d crawl into bed too drained to do anything else. By the time Thanksgiving (2018) came around, I was a completely depleted mess.  And so I went to the doctor once again at the insistence of my family. 

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Read the Rest of the Story:  What’s Wrong With Me? Part 2

What has been your experience if you, too, live with chronic illness? Did it slowly take over or did it hit you all at once?




My granddaughter says “Sharing is Caring”;)



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Using the Force to Further Fibromyalgia Advocacy

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!

Photo of my inner forearm laying on my computer keyboard, white coffee cup behind it.  On my forearm is an outline of a lotus flower done in purple and teal colored lines and dots.

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.

Other Resources:





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Fibromyalgia: 15 Bloggers Share Top Tips for FULLY Living

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.

Light teal text: Fibromyalgia: 15 Bloggers Share Top Tips for FULLY Living Multicolored line drawing of a lotus

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.

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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 Files https://fibrofiles.blogspot.com/.
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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!

From Donna @http://www.fedupwithfatigue.com/

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Tips for Painful Hands

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

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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/

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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/

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Motherhood Wisdom

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. From Shelley @ https://www.chronicmom.com/…/what-are-the-best…/

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Health Coach Gives Quick Helps & Longer Lasting Steps

Quick Helps:

  • Drink enough water to adequately hydrate your body.
  • Use topical/internal products for temporary/supplemental relief (herbal remedies, oils, rubs, supplements, etc.).
  • 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)
  • 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.

Longer-Lasting Healing Tips:

  • Support your body and mind with healing nutrition (remove what’s triggering pain/symptoms for you and replace key missing nutrients)
  • Support your body and mind with key stress management practices and protocols — done regularly and consistently
  • Support your body and mind with the elimination of toxins, infections, pathogens, etc. and replace with key missing micronutrients and remedies to re-establish gut/intestinal balance
  • Support your body and mind with better quality sleep (notice how this is a natural outcome of the previous steps?)  

From Sue @ https://rebuildingwellness.com/top-tips-fibromyalgia/

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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.

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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/

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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.

From Nikki @ https://brainlessblogger.net/…/top-recommendations-for…/

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Top Ideas for Coping with Chronic Pain

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 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/
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Sleep/Nature/Simplify

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.

From Melinda: https://lookingforthelight.blog/2021/04/23/my-top-three-fibromyalgia-tips

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Wide Range of Symptoms

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…/

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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.

I have fibromyalgia, it does not have me. From Cynthia Baughman at www.MyInspiredFibroLife.com.

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How to Navigate A New FM Diagnosis

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 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.
  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 fibromyalgia, I am finally doing the work to be my authentic self.

Here is my full post with loads of links to other helpful posts: https://painfullyliving.com/2021/04/22/may-is-fibromyalgia-awareness-month-how-to-navigate-a-new-fibro-diagnosis/


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;)



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Bright blue background with whit text: I Did It My Way! and Dark Blue Text: One Year of Low Dose Naltrexone for Fibromyalgia

I Did It My Way! One Year of Low Dose Naltrexone for Fibromyalgia

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.

When I started taking Low Dose Naltrexone (LDN), I had high hopes- really high. My bar was little to no pain, dependable energy, and no more issues with foggy brain. At my one year anniversary, I will admit, it didn’t meet that bar. However, at this time, there just isn’t one treatment that does this for anyone living with Fibromyalgia.

What I can say is it has greatly improved my life. The significance of this one-year anniversary is that I was told early on that I wouldn’t see the full outcome until 6-months to 1-year of continuous use.

My LDN Journey Posts:

Low Dose Naltrexone image with quote block next to it describing how it works.

The Abbreviated Story of LDN

This will be a brief overview of what LDN is and how it works. My 1-month update gives a very thorough overview along with great resources to check out.

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What is Low Dose Naltrexone?

Naltrexone is a drug that was approved by the FDA in 1985 to treat opiate dependencies. The normal dosage levels to treat alcohol or opioid addiction is between 50mg to 100mg a day. At this level, the Naltrexone will block any of the “high” the alcohol or opioid would produce, helping with abstinence from addictive drug use.

Low Dose Naltrexone is a much lower dosage of 10mg or lower per day. For Fibromyalgia, the researched most dosage level is 4.5mg. However, the dosage is really variable in each individual’s body system and how they metabolize the LDN. One important point I want to emphasize is that higher dosage does not equal better results.

Dr. Ian S. Zagon discovered that using Naltrexone at these much lower dosages could help with a variety of issues. In 1975, he stumbled on its usage when searching for a way to hamper growth of cancer cells after seeing that babies born to mothers addicted to opioids were smaller and less developed. To off-set the effects of the opiods, he used Naltrexone (Naloxone, originally) at low doses to administer opioids to slow growth. In the end, he found that just the Naltrexone caused slowed down the growth of cancer even better than opioids. This surprising finding led other doctors to begin experimenting using it to treat other conditions.

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How Does Low Dose Naltrexone Work?

Research has shown that those living with Fibromyalgia have lower levels of endorphins (and possibly don’t process them like they should). Endorphins are the body’s natural opiate-like chemicals that are produced in nearly all cells of the body. Endorphins can lessen pain, increase good feelings, and influence cell growth (among just some of their effects).

For Endorphins to work, though, not only do you need it to be produced in enough quantity but they need to connect to the receptors on the surface of the cells. In my imagination, I see this like a docking station that is receiving its new shipment of nutrients. The connectors must fit between the two.

What Naltrexone does is bind to these “opioid” receptors, blocking them from connecting to the drug like heroine or alcohol to then stop the “high” they would produce. However, it also stops any of the body’s natural endorphins from connecting to the receptors while they are being blocked. Doesn’t sound like a good thing, does it?

That’s where LOW DOSE Nalrexone comes in. At the lower doses (again each person’s body metabolizes it at different rates), the opioid receptors are blocked for a few hours before it’s naturally excreted. The results of this short term blockage is amazing, and this is why it helps those with Fibromyalgia.

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LDN Rebounding Affect:

Once the LDN has been metabolized, the body has a rebounding effect. Basically, during the blockage of the receptors, the brain is tricked to thinking it’s not produced enough Endorphins AND doesn’t have enough receptors that are functioning at optimum levels. So, it goes on overdrive to remedy the situation.

  • It causes increased RECEPTOR production.
  • It causes increased RECEPTOR sensitivity.
  • It causes increased ENDORPHIN production.

This is the miracle. The body becomes its own factory of pain relieving chemicals!

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Rebound Duration:

The trick is to find the proper dosage and timing to have optimal duration of this wonderful rebound pain releiving effect. However, that’s the issue. Every LDN user needs to figure what works for them because every body metabolizes chemicals differently. It’s not a matter of just height and weight as it is for so many other drugs.

For many, the duration is about a day. That means that the LDN is only in your system for a few hours, which causes hours of relief from the time it blocked the receptors in your cells.

My Year’s Experience with LDN

I have found out the hard way that I am very sensitive to medicine. If you have Fibromyalgia, the chances of you being very sensitive to medicine is pretty likely.

While it is said that LDN doesn’t have any side effects, I’m assuming they are meaning that at the correct dosage for you, there isn’t. They also have a motto when starting LDN, “Go LOW and SLOW.” Suggesting start low (say 0.5mg) and titrate up every two weeks. Some can start at 4.5mg with no issue. I started at 2.0mg, and it was HORRIBLE!

I spent 3 days in bed: dizzy, headache, throwing up, not able to eat… However, I wasn’t going to give up. Luckily, my friend, Donna of fedupwithfatigue.com had been taking LDN for years and had some good knowledge for what to do. Also, joining the private LDN Research Trust Facebook group, I was able to find information that guided me.

Stopping for 48-hours to clear my receptors, I restarted at 0.25mg. Quite a drop from 2.0mg. Within a day, I felt like superwoman. It was last April, and I went out into the yard and raked leaves for several hours. I had energy, clear thinking, and low pain for three days. Then, it felt like the bottom dropped out for a few days. I have never gotten that perfect day feeling again, but I have to say, I have recently been having some days that are coming pretty close. See my post: Tentatively Esctatic! My Experience with Low Dose Naltrexone-Part 1 for more details.

Each week or two, I’d go up another 0.25mg. You are probably wondering how I could do this. The compounding pharmacist I was working with agreed after I told him my reaction to the 2.0mg start to make a liquid solution for me to up myself by 0.25 or 0.5mg.

I noticed that I dipped just before I needed to titrate up, which led me to feel that the dose wasn’t enough. The last few months of this year, I went between 3.0mg to 4.0mg to see if I could find what is known in the LDN chat groups as the SWEET SPOT.

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My LDN Sweet Spot

This past week, I landed on 4.5mg and have had a wonderful week. Yesterday, I hiked 8-miles with my hubby on the North Country Trail. By the end, I definitely had muscles locking up (despite stretching and resting along the way), and the pain was going up. I did an hour+ of myofascial release and come evening (and my night dose) the pain was back down to lower levels. My mood and energy never waned all day.

I’ve even been waking up in the morning feeling pretty good. Mornings have been the hardest part of my day. When I get up to go to the bathroom, I generally can tell if it’s a back into bed or make the bed type of day. I’ve had much less muscle pain and restriction. My joints at the elbows and inner knees have been more painful since switching to a split dose, though. However, the positive results of energy, clear thinking, happy mood, and lower muscle pain outweighs that problem for me to make any changes.

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Split Dosing for Fibromyalgia

A little over a month ago, I began to do a split dose. I did this because the rebound effect wasn’t lasting a full day. In my research, I found that taking it morning and night has been found to be more beneficial for those living with Fibromyalgia.

My thinking (I was at 4.0mg a day) was to take half of that at 9pm and then again at 9am. It was working better than just taking the 4.0mg at night. However, when talking with someone who is very experienced with LDN and then looking into it more, that isn’t the correct approach.

Because the LDN doesn’t stay in your system, it’s not like the LDN is adding on together to make 4.0mg when taken 12 hours a part. So, it is recommended to take the dose that best works for you (your SWEET SPOT) at both splits.

So, I started at 3.0mg for about a week. I’m now to 4.5 mg, and it seems like this might be it. I still am having the elbow and knee joint pain at about a 4/10. Also, I’m having more difficulty with getting to sleep, but am sleeping okay once I do. I’m going to give it a bit to see if that resolves and be more vigilant about my sleep hygiene routine.

“Individuals vary in their metabolic speed and this will result in inter-patient variation in the speed at which LDN is eliminated from the body, as well as the length of the rebound effect. Whilst a single daily dose of between 3mg and 5mg will be suitable for most patients, individual modification of dosage or frequency is sometimes needed.” via How Does LND Work

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Major Turning Point

I’m a little bit leery in saying this publicly. I’ve done that a few times before and had an immediate negative change in my symptoms. However, I just have to tell you about the last two weeks.

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A Day Back in the Classroom

I have been waking up with energy. My body isn’t feeling as rusted and filled with sand. I do my morning routine (guided meditation & therapy light) pretty consistently. But this is a noticeable positive change. This energy and clarity have stayed with me until about 5pm with lower levels of pain (2-3). But even when I feel the drop, it’s not been to the level of high pain (5-6) that I had been experiencing before the 3.75mg split dosing.

Image of me, wearing a mask, in the classroom.  Classroom sink, mailbox, door and back of student sitting at his desk behind me.

This Friday, I didn’t get to finish this post this morning as planned. But for a great reason. I was asked to substitute teach for my ex-team teaching partner. Boy, was I nervous committing, but I had a great week and really wanted to do it. My ex-principal and secretary, understanding my concern, worked out a back-up plan if I should need to leave early.

The crazy thing is on Tuesday, my husband and I hiked 8 miles on the North Country Trail. While I was definitely tired and sore after, I was able to do about an hour of myofascial release, and the pain lessened dramatically for the rest of the night.

Then, Wednesday, which would usually find me really worn out, foggy brained, and sore after a day like that, I felt great. In fact, I was able to go for my weekly 3 mile walk through the woods with my friend from New Jersey (talking over speaker phone).

Yesterday, I had two doctor’s appointments-one at 10:45am and the next at 4:00pm. Being both were in the big city and an hour from my home, I asked to have lunch at the school I had taught in (with my 6th grade teacher colleagues). It was wonderful. It was the first time I had stepped foot in the school since my last day of teaching on December 7th, 2019! That’s when I learned my colleague was taking a personal day, and they didn’t yet have a substitute teacher.

Can you tell that I’m near bursting with joy?!

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FULLY Living Despite Pain

As I mentioned, LDN isn’t the FULL resolution to Fibromyalgia issues.

After my day at school, I spent the rest of the night doing myofascial release, using the heating pad, and resting. This morning, though, I woke up tired and foggy brained. It’s a back to bed and take it easy day. It’s hard not to push it when you feel great.

But the day was worth the spoons I spent. Leaving teaching on a sour note due to my illness made me feel like a bad teacher, and being I spent 32-years of my life devoted to my profession, that really was a wound in my soul. This day of connecting with the kids and having them happy to have me brought me much joy.

LDN, along with my other self-care protocols, have brought me to a place where I can live FULLY despite pain.

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If you have specific questions about Low Dose Naltrexone, feel free to contact me. Also, I’m including several wonderful resources. The video talk with Dr. Ginevra Liptan gives great specifics from a doctor who understands Fibromyalgia and the use of LDN. I encourage you to at least investigate this possible treatment. It has allowed me to more FULLY live my life.

Further Information:

Sharing is caring- at least, that’s what my granddaughter says;)



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May is Fibromyalgia Awareness Month: How to Navigate a New Fibro Diagnosis

May is Fibromyalgia Awareness Month: How to Navigate a New Fibro Diagnosis

4 images: 4 hands with chalk drawing a light bulb on cement, a clip board with the words Diagnosis FIBROMYALGIA and stethescope, a pair of hands cupping a cup of tea, a woman looking down at her hands.  Dark Teal font: How to Navigate a New Fibro Diagnosis.

It’s hard to give advice for how to best treat fibromyalgia (FM) because we are all so different.  But when you find yourself newly diagnosed with FM, it’s difficult to find clear first steps to take.

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 (which is how I came to join Fibro Blogger Directory). So, I share my story just in case other’s living with FM might glean something from my experience.  

From my own journey with FM, this is what I know to be true:

An upclose of a woman's face, looking down at her own hands. She's wearing white and the image is unfocused from her shoulders to the hands. Text in dark teal: Listen to yourself; follow your intuation.

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).

Image centered: Female Doctor holding a paper file, hand older woman's arm, as if delivering information.  Dark Teal Text: Educate yourself.

2. Educate yourself.

With FM, you will probably end up knowing more about it than your care takers.  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 of my wellness journey: rewiring my brain by calming down my amped-up nervous system.

Image of female hands holding a cup of tea. Teal Text: Be gentle and loving with yourself.

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 FM, I am finally doing the work to be my authentic self.

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;)