Thoughts on self-care and self-esteem when living with Fibromyalgia

International Boost Your Self-Esteem Month is held every February. In celebration of self-care and self-esteem, especially because of its importance to people with chronic illness, I have put together a collection of comments about this topic from people living with fibromyalgia. These people, have struggled with the issues of self-acceptance, self-compassion, doubt, and confidence on a daily basis because of a diagnosis. They have realized how important self-care is for just getting through the day when living with chronic pain and other ongoing issues.

The quotes here are all from our wonderful fibro bloggers and you can find out more about them at their blogs by clicking the highlighted links provided.

WHAT IS SELF-ESTEEM? Self-esteem is an evaluation of your own self-worth, essentially the opinion we have of ourselves. Boosting your self-esteem – especially when you have been used to feeling/thinking something for a long time – is a working progress. It takes time, patience, and a lot of kindness to yourself... Sarah at Me, Myself and Chronic Illness Blog.

When your life has been turned upside down by fibromyalgia, and everything you once were able to do is a distant memory, your self-esteem can take a nose-dive. I was here just a few years ago. I had no idea where the old me had gone, and I did not like the new me. Firstly, where was the time for self-care, when I was barely coping with fibro, and raising six children alone. Secondly, with my self-worth at rock-bottom, I wasn't interested in self-care. Here's what I have learned. Self-worth and self-esteem need to be disconnected to what you can get done in a day and connected to the kind, caring, loving person you are, your character. Once you learn to love yourself no matter where you are right now in life, you have a strong motivation for self-care, which makes all the difference to your quality of life with fibromyalgia. - Lynne at The Healing Within Fibromyalgia.

Being forced into an early retirement from a career I never thought would end, with the added bonus of being diagnosed with a condition that would affect my life, tore my world in two and I found myself in one of the darkest periods of my life. James talks about his self-esteem hitting rock bottom and then all the things he did to learn the skills of how to live with a long-term health condition. You can read his story at Fibro Ramblings.

Katie at PainFULLY Living talks about some of the things we go through when coming to grips with fibromyalgia. I realize that I am ashamed of myself when I’m not healthy. I feel like I’m not doing all that I should to be well. I’m not good enough to figure this out. Her article about shame and acceptance talks about choosing to respond to these times with self-acceptance and self-love.

Social stigma is based on ignorance and fear. Self-stigma occurs when you agree with and internalize social stereotypes. Both can lead to social isolation and depression. Remind yourself, you are not your illness, no matter what anyone else may say, think or feel. You have no reason to be blamed or feel ashamed. - Sue at Fibro Daze

I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self-worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one. - Katarina at Skillfully Well and Painfully Aware

Compassion Therapy is an evidence-based form of psychotherapy that draws upon our capacity for compassion to reduce intrusive feelings of shame and self-criticism. It was developed by Dr. Paul Gilbert, a psychologist from England, and uses meditation exercises focusing on understanding the universality of suffering, gaining an emotional connection with other people's suffering, and the motivation to act to lessen suffering. - Find out how it can specifically help fibromyalgia here. 

If healing is a return to wholeness, then loss of good health is the ultimate fragmentation of the self; a state, made manifest, of something much deeper occurring on the inside...

The very pattern of Fibromyalgia lends itself beautifully to developing an attitude of gratitude; the repeated lows and the crashes making the days when you feel great, or even just a little better than you did, enabling you to appreciate the inherent joy to be found in even the simplest of things. From Fibromyalgia – the fragmented self by Helen at Living Whole.

SELF-CARE: I know, self-care, self-care, self-care. I think just about everybody is “self-cared” out right about now because we all write about it so much. But you know why we do write about it? That is because it is one of the things that we absolutely and positively need... Jennifer at Positivity In Pain.

A wish for you: A good cup of worthiness, affection, trust and love for yourself, no matter the roads in which you choose to follow. An acceptance that allows you to forgive the multitude of 3am anxiety attacks that see you in tears on the bedroom floor or the number of times you have beaten yourself up for being sick, unreliable, disappointing, boring, a burden and most importantly an overall ‘drain’ on the multidisciplinary healthcare system. - Sharna at Fibro Files

Self-care is so important whether you have a chronic illness or not. Make sure to put your health first as often as possible to have your best life. - Mel at Looking For The Light shares her own nightly self-care routine here. 

Donna at Fed Up with Fatigue explains how she was bad at self-care, drove herself too hard with the A-type personality that many people with fibromyalgia seem to have had and what she does now to provide herself with the self-care that she needs on a daily basis.

Why are we so afraid to let go of things in our lives that cause us stress? Why does it take so long? Why are we afraid to practice self-care? 

For me, I can say without doubt that my drive to succeed came at a great personal cost to my health and soul.

I struggled to figure out which parts of my life were causing the most stress. I told myself over and over I couldn’t keep juggling all those balls in the air anymore. There was no time to run my own business, continue with my volunteer work, keep up with my health (29 visits to the hospital in 2017 and 32 in 2018) and keep my relationship with my husband going.

We chose to remove it all and decided to focus on us.

I cleared out the parts of my life in my home that were gone years ago.

Anything that caused me stress, anything that did not bring me joy, anything that caused me to exert energy all went out the door, room by room, item by item, with many tears and silent reminders to look forward to tomorrow and not think about the past or the future. From Carrie at My Several Worlds where she also shares 8 tips for letting go and clearing out things that do not contribute to self-care. 

If you’ve read my blog for any amount of time, you will know that meditation saved my life. I do it every single day, and if I must miss a day it’s very rare. It gives me deep rest my body doesn’t even achieve during sleep. It tops up my energy levels for the afternoon. It calms my central nervous system. It is just for me. 15-30 minutes of pure self-care. - Melissa, from Melissa VS Fibromyalgia

Rachel, at Once Upon A Fog Blog, practices self-care by living her life with creativity, laughter and happiness. She is a graphic designer, who believes in the power of laughter and positivity so much that she runs a Facebook group for The Happiest Place on Earth!

Suzanne at Coco Lime Fitness suggests a Digital Detox, low-impact exercise, and eating an anti-inflammatory diet to help us stress less. It is also very important not to be overly stressed about eating perfectly because the stress in and of itself can make fatigue and pain worse.

Jennifer at Positivity in Pain talks about self-care and her tips which include a grounding technique, the importance of laughter, getting outdoors, and getting help. I implore you to find a therapist, one that is a good fit for you. Whether it is in-person or telehealth, having someone to talk to can make all of the difference in the world. Not only that, they can teach us coping skills for times when we need them the most. 

PRACTICAL SUGGESTIONS FOR SELF CARE

25 ideas for things we could do in 10 minutes to make us feel good.

Nighttime self-care routine 

Digital Detox

Yoga Nidra for Fibromyalgia

Low Impact exercises for fibromyalgia with a fitness instructor.

Mindfulness for the Daily Life Challenge

Connect with others at Fibro Connect

Boost your self-esteem with a new skill: 12 suggestions for people with chronic pain.

Practical ways to boost your self-esteem including refusing harmful or inaccurate thinking.

Building the Compassionate self: audio

Psychological therapies like counseling or cognitive-behavioral therapy (CBT) can help.

Coaching.

Dimensions of Wellness - look beyond physical wellness at the other 7 areas we can get some balance in.

Prayer

Self-care during a flare

8 tips for letting go and clearing out things that do not contribute to self-care

Anti-inflammatory Diet

Now it's your turn to tell us what things have helped your self-esteem and what you have tried for self-care. We'd love to hear from you in the comments below.

Focus on Five

Focus on Five showcases five fabulous fibro bloggers here each week. This week we spotlight five of our favorite bloggers at Fibro Blogger Directory. Fibro bloggers are a unique group as they live with a chronic pain condition and still choose to write about it to help others. 

Rob and Bridget are chronic illness and disabled travel bloggers from the United Kingdom. Between them, they have a large "collection' of illnesses including fibromyalgia, sleep apnoea, and rheumatoid arthritis. Their blog The Bimblers is about living in the slow lane and finding accessible travel. 

 

"When you travel with a disability, there is more to picking a holiday destination than finding out where the best beach is or what the nightlife is like. Yes, these are important, but so are the more practical things as well."   

 

10 Free and Accessible Things to do in London and Accessible Guide to the UK’s National Parks are just two of their many helpful and indepth articles. They talk all about inclusive travel and chronic illness on their Facebook page and Twitter feed.

 

Lynne Said helps women reduce the pain, fatigue & fog of fibromyalgia, build their confidence and get their lives back. She is a qualified NLP Master Practitioner, OldPain2Go Practitioner and Health Coach, a member of the Complementary Medical Association, and a member of the Association for Neuro-Linguistic Programming. She was diagnosed with fibromyalgia in 2014 and blogs at The Healing Within Fibromyalgia. She has many posts there including I Left When Fibromyalgia Arrived and How to Reduce Fibromyalgia Pain.

 

"There's no cure for fibromyalgia at this time but that doesn't mean we can't have a quality of life! Focusing on the core of what supports good health rather than trying to play whack-a-mole with symptoms and flares is the way forward." 

 

Her Facebook page is full of helpful suggestions to support healing. 

 

 Cynthia Covert was diagnosed with fibromyalgia, psoriasis, psoriatic arthritis, and endometriosis between 2001 and 2004. Also, a handful of surgical errors have left her with irreparable abdominal damage. Despite all of this she is always looking for ways to make living with chronic pain and illness easier, less painful, and more fun. She blogs about her chronic life story, self-care, and accessibility at The Disabled Diva's Blog. She has helpful posts, where you can also listen, like 6 Fibromyalgia Triggers and How to Avoid Them and Fibromyalgia Treatment Lyrica Patient Review Of Side Effects And Benefits 

You can find her on Facebook and her colorful Instagram account contains all her famous meme creations.

 

Bettina Bier was diagnosed with fibromyalgia in 2011 and has been blogging about it since 2018 at Me, Myself and I - When Nothing Goes Right Go Left. 

 

"In your dream you have so much pain in your back that you barely can stand & you wake up from this. 

 When awake you realise it was not only in your dreams.

These are the days when it only can get better." 

 

Bettina has an interview series with people living with fibromyalgia, like Nikki and Alisha and also translates some of her fibro articles into German to help a wider audience. Of course, I would be remiss to not mention her beloved dog Scotch who she shares photographs of on Facebook, and her love of the show Supernatural which she often tweets about.  

 

  

Joanna Orgovan has been diagnosed with fibromyalgia and chronic fatigue syndrome. She is a certified coach who believes that getting better from Fibromyalgia starts with your mindset. Her blog - But You Look So Healthy - focuses on natural techniques to treat and live with these conditions. 
 
"I have pretty much died to my old self and have started anew to create a brand-new life that has healed me from fibromyalgia and chronic fatigue syndrome. Sometimes, it's a fine line of that one thing that can drive you back over the edge to being ill. I do not compromise anything for my health. Not one thing." 
 
Her information packed posts include The Mindset You Need to Feel Better From Fibromyalgia, Forever... and Chakras, The Vagus Nerve and Fibromyalgia, Oh My! You can find her on Facebook and Twitter.

 

Focus on Five

Focus on Five showcases five fabulous fibro bloggers here each week. This week we will shine a spotlight on five of our newest bloggers at Fibro Blogger Directory. Fibro bloggers are a unique group as they live with a chronic pain condition and still choose to write about it to help others. 

Sarah Warburton has been living with fibromyalgia since at least 2012. She can remember symptoms when she was growing up.  She blogs at Musings of life with fibromyalgia about her life with fibromyalgia in the United Kingdom, including things that lift and inspire her. Even though she lives with anxiety, chronic migraine, and spinal injury as well as fibro she is learning ways to manage her conditions rather than them controlling her. 

 

"Since being diagnosed with fibromyalgia, I’ve been on a mission to find ways to thrive and live a positive life by learning as much as I can about self care and wellness and putting these new skills into practice."  

 

Some of her helpful posts include Fibro, Anxiety and the Festive Season and 5 tips for Travelling by car when you have Fibro. You can also follow her tweets as SarahW @sswarbo  

 

Tash is the blogger at Bohemian Solitude where she is sharing her thoughts as an artist living beyond fibromyalgia, endometriosis, Chronic Fatigue Syndrome, migraines, and PTSD.  

 

"I am the artist behind Bnspyrd's Artist's Resources, I will be posting about my life, helpful advice & links, please join me on my journey."   

 

Tash was diagnosed with fibromyalgia in 2019, lives in South Australia, and is a freelance artist. She has some original, interesting poems on her blog as well as sharing her day-to-day life in posts like Introduction about my life as an artist and in chronic pain. You can also find and follow her on Facebook  

 

Shannon Murphy is a Canadian who loves to travel and is not letting fibromyalgia stop her from doing this. She also loves photography and nature and has combined her passions at Route 5976 - Fibromyalgia Travel blog. She writes about how she manages the daily limitations of pain and fatigue while still finding joy through traveling in Canada and around the world.  

 

In Travel Lightly she writes "These are my top three tips to travel lightly with fibromyalgia. Keeping in mind that a one size all approach to fibromyalgia does not fit all…find what works best for you within your limits. Hopefully my tips help to inspire joy, excitement and wonderment that comes while travelling near or far. "  

 

You can follow her tweets at Shannon Murphy @route5976fibro and also find her on Pinterest

Beckey Barton lives in  Stratford Upon Avon, in England and has started a local support group for fibromyalgia there. At her blog Whispers from Beckey she shares her busy life as a wife, mother, graphic designer, and high school governor living with chronic pain conditions.  She hopes that others can learn along with her. You might like to discover her idea for crafting when living with pain here in  My Secret Geek Revealed and says 

 

"I love life and God, laughter, singing and being creative; but I also face daily battles with my health, including Fibromyalgia, CFS, Scoliosis, and I won't bore you with the rest!"  

 

You can follow her tweets at Beckey Barton @BeckeyBarton and also find her on Instagram 

 

Susan E. Bisco has been writing for many years and blogging about fibromyalgia since early 2016. She is happily living on the northwest banks of the Mississippi with her life partner. Fibromy What? is her blog where she is known as DeeDeeDarkly. She discusses many topics including her exercise and diet and you must read Things to Be Sure Your Doctor Actually Understands: Part 1, Part 2, and Part 3. She explains her blog in her own words: 

 

"Hello fellow wanderers.  As you can see in my fine print disclaimer, this site is dedicated to the discussion of fibromyalgia, chronic pain, chronic fatigue… Sounds fascinating doesn’t it?   

Chicken or the Egg: In which we will explore which comes first – chronic pain or chronic fatigue? chronic pain or depression? chronic pain or sleeping disorder? and any other pertinent possibilities."

I hope you have enjoyed finding out more about these fibro bloggers this week. don't forget to call in next week to see who will be included in Focus on Five.  

Blogging when you have chronic illness conditions

Claire shares 6 tips she has learned from blogging, over the last few years, when living with multiple chronic conditions.

As many of us with health issues will know, working a traditional job can be a challenge with long hours, commuting and the difficult aspects of a work environment. Now I didn’t ever imagine I would be blogging with chronic illness (and about chronic illness!) back in the day when I was still at my previous job, but I almost can’t imagine not doing it now.

Blogging has flexibility as one of its main benefits. It can be done from your sofa or your bed, at whatever time of the day works for you and in your pyjamas if you wish! All of which can make it a great choice for those with chronic illness for whom a 9-5 job would be impossible, or really problematic. Aside from the financial aspect, it also helps us become part of the chronic illness community and personally I find it motivating to have my own little project. I hope this post on blogging with chronic illness is interesting, and has a few helpful tips too!

Some things I have learned recently about blogging when you have chronic illness conditions:

1. Have a rough schedule, but a flexible one – I try and do one chronic illness post a week and one new recipe. This is the ideal, but if it doesn’t happen due to symptoms, then I give myself grace over it. Staying up until midnight to finish a post is rarely a good idea and may have you feeling even worse the next day.

One way to help prevent fatigue and still be consistent with social media is to schedule your posts. There are lots of ways to do this such as the scheduler within Pinterest, or Tailwind. 

2. Pace yourself – I work blogging around other necessary tasks. Doctor’s appointments, medical admin, life admin, and catching up with friends and family come first, blogging comes second. Make sure you take breaks, take your meds at the right times(!), and have time away from your computer screen.

3. Find your niche and one that you are passionate about – if you don’t love what you are writing about then you simply won’t write! Or at least find it tedious to do so.

4. Make some chronic illness blogger friends! I am very fortunate to have quite a few such friends now and it is so lovely to be able to bounce around ideas, ask for advice or simply gossip about anything but blogging! To my two favourite blogging friends (both beginning with S!) – I love our group chats, and you both make me smile so much 🙂

5. Consider monetising your blog – if blogging is a passion of yours and you have a degree of readership, then it can also help your finances. And we all know that the chronic illness life is an expensive one! Working with an ad company is one way to earn money, you can use affiliate links or work with brands on paid posts. I can’t promise you it will earn you millions, but it should at least cover the costs of hosting, domain, photo editing etc.etc.

6. Promote your posts! While you may get lucky and get good SEO without ever promoting your post, it is fairly unlikely. Sharing your posts will get it out there, and social media is key in my opinion. Pinterest is my best referral platform by a long shot, but I also share on Twitter and Facebook and I have a weekly round-up of new posts and a few older ones on my Instagram stories each Sunday.

READ THE FULL POST AT Claire's Blog 'Through the Fibro Fog'. It's titled 

Blogging with chronic illness

Claire has been diagnosed with fibromyalgia, dysautonomia, hEDS, MCAS, and interstitial cystitis. Her blog 'Through the Fibro Fog' offers tips and tricks for living with chronic illness, as well as simple but delicious low histamine recipes. Please visit her blog

Six Tips for Blogging with Chronic Illness

Melissa shares her Six Tips for Blogging with Chronic Illness:

1. Newsletter list is your own home, followers are your rental home. I started with a free WordPress website because I just started writing. I thought that all my WordPress followers would just migrate when I did. They didn’t. Start a newsletter list immediately.

2. Traffic is important but the right traffic is best – I found Pinterest and YouTube more engaged than Twitter or Facebook people, so apportion your time and energy on the places that matter.

3. Hosting is tricky but important. My first hosting experience went terribly. I am now with GreenGeeks and they are great. You can check out their awesome hosting deal here.

4. Use Canva for images, my energy-friendly tip is to make a Pinterest size image and use as the blog image and then it is easily shareable to Pinterest. If you want to get fancy make two pin images and one Facebook image for Facebook group sharing. It is worth learning to use Canva immediately.

5. Long form content makes useful resources but make sure its very easily readable in short paragraphs. I have found a mix of personal experience, research and other anecdotal experience to be great.

6. It is so fulfilling to be able to simultaneously write and help others. There was a time I thought I wouldn’t be able to complete my number one life list goal of writing a book but I did! Bit by bit. You just have to start.

You can read her article Make Money Blogging With a Chronic Illness

About Melissa vs Fibromyalgia

Melissa Reynolds has been sharing her personal journey and research into fighting the chronic illnesses fibromyalgia and myofascial pain syndrome since 2013 on the blog www.melissavsfibromyalgia.com. Over time this has grown to include two books, courses, Facebook support groups and coaching. It has developed organically responding to client need and Melissa’s ability as her personal journey has taken her closer to wellness. You can visit her blog here. 

Fibro Bloggers and their stories - Angelique Gilchrist from Fibro Ramblings

Fibromyalgia, The Disorder that Changed me Forever by Angelique Gilchrist.

Introduction

My name is Angelique, I live in South Africa, and am a mother of three beautiful souls. I have the most incredible husband who has stood by my side throughout. He’s my rock and I’m forever grateful for him.

I used to work in the rental finance industry as an Accounts Executive. I loved my job. I travelled a lot for business which I enjoyed as I didn’t have to sit in an office every day. My job was stressful at times, but I loved the challenges. I almost always exceeded my targets though hard work and determination.

I was healthy for the most part except for asthma which I developed in childhood, but it was under control. I had the odd cold and flu at times but nothing else. I had an abundance of energy and successfully balanced my career and home life. Being a perfectionist, I was constantly on the go and thrived in this environment.

Angelique and her husband

The Diagnosis

Around 2007, I started experiencing “Restless Legs Syndrome” (I didn’t know it had a name at that stage) and every night my legs would not stop moving. I assumed that it’d go away on its own and tried to ignore it. 

April 2008, I had my gall bladder removed due to a polyp growing on the body of the gall bladder. The operation was done laparoscopically. Waking after surgery, I felt extreme pain in my neck and shoulders. The doctor explained that during a laparoscopic procedure, the abdomen is inflated with gas (Carbon Dioxide), and the pain I was feeling was from the gas working its way out.

And so, it began … This pain remained and I haven’t had a pain free day since!

My legs got worse and I developed insomnia which interfered with my daily life. The pain in my legs and body was excruciating. I started getting headaches, migraines, nausea, dizziness, muscle spasms, and extreme fatigue. I consulted with my GP. He ordered lots of blood tests and diagnosed me with Restless Legs Syndrome. He prescribed medication, however nothing helped. He then referred me to a Neurologist.

My consultation with the Neurologist, Dr Wolberg, was in July 2008. He performed a neurological examination, more blood tests, an EMG, lumbar and brain MRI. Restless Legs Syndrome diagnosis was confirmed. Prescribed medication made no difference, and some made me feel worse. I stopped taking all medication.

My condition continued to worsen, and extremely painful muscle spasms began to form. At times, I was in so much agony that I’d end up going to the Emergency Room. Doctors would relieve some of my pain with medication. However, none of my symptoms were going away or getting better. My pain levels kept soaring. Due to this, I couldn’t function normally. The severity of my pain meant that there were many mornings I couldn’t even get out of bed. I wanted to know what was wrong with me so that it could be fixed? I needed this agony to end.

During my second consultation with Dr Wolberg, he prescribed different medications. I had a bad reaction to one of the medications and ended up in the ER. I was admitted to hospital and spent the next seven days there.  During this time, a lot more tests were done, including a brain MRI, lumbar puncture, blood tests, etc. My medication was changed again. Physiotherapy was done and I experienced some relief from this. While in hospital, my boss came to visit to hand me my retrenchment papers. Some people …!! With that my depression worsened. My psychiatrist suggested I spend 2 weeks in a clinic working on my depression but once I saw the place, I refused to go. I was then discharged with no answers. It felt like 7 days had been wasted.

A few days later I phoned Dr Martinus (Neurologist) to obtain my test results. Dr Martinus was extremely rude and told me to contact Dr Wolberg (my initial Neurologist) to get the results. Turned out that Dr Wolberg had not received any results and once they got them, they phoned me to let me know that everything was fine. I received a copy of the brain MRI results which noted that “white spots” on the brain were detected. I wanted to know what that meant. Dr Wolberg said it was nothing and I didn’t need a repeat MRI. The treating physician in hospital told me to repeat the MRI in 6/8 weeks and Dr Martinus told me that I needed a repeat MRI in 6 months’ time. Confused much??

A short while later, I ended up back in hospital due to severe pain and muscle spasms. This time a neck x-ray was done, followed by an MRI. The results showed that I had early facet joint degeneration, decreased cervical lordosis, and bulging discs. A Neurosurgeon told me to take all my scans to Dr Wolberg.

While waiting for an appointment with Dr Wolberg, I continued with physiotherapy. Eventually the therapist suggested that I urgently see my Neurologist as he’d never seen such bad muscle spasms and the physio wasn’t working. There were times I felt the physio made the pain worse.

I emailed all my results and recommendations to Dr Wolberg as I was unable to get an appointment with him. Dr Wolberg told me that I needed to see a Rheumatologist and referred me to Dr Dessein. This doctor had an extremely long waiting list. I put my name down and asked them to phone me if any cancellations arose.

I felt so defeated and confused. I had to carry on as usual regardless of what I was going through.

The pain continued to worsen. My GP would at times give me an injection for the pain. This was only short-term relief and the cause was not being treated. I ended up at the ER again due to extreme pain. I noticed a difference in the way the staff were treating me. They phoned Dr Wolberg who explained to them that I needed to see a Rheumatologist. I was refused any treatment for the pain and in fact was treated like a drug seeker. My pain was so intense that I was contemplating suicide and now I was getting treated like this!?

Why is it that when you have diabetes, you get treatment? If you have Epilepsy, you get treatment, etc. etc. However, if you are suffering from Chronic Pain, you will not readily get treatment and will rather be treated like a common drug addict or drug seeker.

A couple of days later and the pain was unrelenting. I couldn’t function at all. I drove to the Milpark hospital where Dr Dessein was based. This was far for me to go but I needed to urgently see a Rheumatology as I couldn’t carry on living this way. I was admitted under the care of a neurologist, Dr Rowji. I spent the first night in High Care and was transferred to a ward in the morning. I was seen by Dr Rowji and explained everything to him in detail, making sure not to leave anything out. His first comment was that he doubted the diagnosis of Restless Legs Syndrome and there wasn’t enough evidence to substantiate a consultation with the Rheumatologist. Besides this, he seemed very friendly and helpful.

When seen the next morning, he mentioned that he hadn’t received all the results but was able to tell me that I had no arthritis. Finally, some good news. That evening, Dr Rowji was back to see me. This was his feedback:

• All results were back and there was absolutely nothing wrong with me
• He claimed that Dr Wolberg had never suggested I see a Rheumatologist
• I should stop looking for a Neurologist to find a problem with me
• My problems were psychiatric, and a psychiatrist would be coming to see me
• He asked if I’d been a “rugby ball” in a previous relationship as the “white spots on the brain” were caused by brain injury!
• He told me to stop wasting his time

Feeling completely shocked was an understatement. I tried to show him proof that Dr Wolberg had referred me to the Rheumatologist, but he dismissed me, telling me that I would not be seeing a Rheumatologist. Again, I was very rudely and abruptly told to stop wasting his time. I was completely broken by this stage. I ripped the drip out my arm and left in tears. Just a quick side note, this medical treatment is not government funded or free. We must pay a fortune on medical aids and these doctors are private and we end up paying a fortune to see them.

I fell into a deep depression. Unrelenting pain, restless legs, insomnia, headaches, confusion, muscle spasms … I couldn’t live like this. I took an overdose and woke in hospital the next day.

In July 2009, I finally got to meet with a Rheumatologist, Dr van Zyl at Unitas Hospital. Within 10 minutes, he diagnosed me with severe Fibromyalgia! I was not crazy, and it was not all in my head! Finally, someone that believed and understood what I was going through. Dr van Zyl put me on medication which was changed here and there and performed regular trigger point injections. I was seen by a different Neurologist to monitor the white spots on the brain. I was so excited as I was convinced that this was going to be a thing of the past. I managed to get a new job and could see the light at the end of the tunnel.

Sadly, due to the severity of my Fibromyalgia, it was recommended that I be medically boarded. The Fibro symptoms can be bad and can interfere a lot with your functioning. My worst symptoms experienced were:

• Fibro Fog. Completely forgetting information that I used to know very well. I could barely remember what I had done the day before. I was becoming a blithering idiot.
• I battled to concentrate, and my cognitive functioning was not the same anymore.
• When speaking, I would battle to get the words out that I was trying to say.
• During a conversation, I would often forget what I was saying in the middle of a sentence. It never came back. My brain went blank.
• I used to be on the road often as mentioned and now I was getting lost in places that I drove to often. This was a terrifying experience.
• Sitting in one position for an extended period was unbearable.
• The pain was unrelenting and worsened.
• I was permanently exhausted due to the Chronic Fatigue Syndrome.
• Headaches all the time.
• Battling to walk due to the extreme pain.

There was nothing more that could be done for me. There is no cure, and little could be done to improve my symptoms. I have severe Fibromyalgia. I went on disability in 2010. Dr van Zyl left and I am now under the care of Professor Meyer who is a pain specialist and an expert on Fibromyalgia.

I remain ever hopeful that a cure for Fibromyalgia will be found. I refuse to accept that it is incurable. One day I will return to the person I was and will be able to enjoy life to the fullest again.

Why Did I Create Fibro Ramblings Blog?

After what I went through to get a diagnosis and a treatment plan, I decided that I needed to try and raise Fibromyalgia Awareness. It is such a terrible condition. Not only do we suffer from the condition itself, but we too must suffer at the hands of people who don’t believe that Fibromyalgia is real and presume we are making it up!  This treatment comes from doctors, friends, family, and complete strangers. We constantly feel like we must prove that it is a real illness. “Oh, but you don’t look sick” … such a common statement. Fibromyalgia is an invisible illness and we end up feeling so alone with little to no support. People can be so ignorant and insensitive at times. I wanted to create an environment where I can share my experiences and knowledge about Fibromyalgia in the hopes of helping people suffering from Fibromyalgia. I too hope that I can educate people about the condition. We don’t want pity from anybody, we just want them to understand what we are going through. If I can help just one person through my blog, then I will be happy with just that. One of the features that I am doing on my blog is allowing people to tell their stories and show their faces. Fibromyalgia affects everyone ... the young and the old, male, and female … there is no discrimation. Telling our stories is healing and is part of our diagnosis acceptance. Knowing that you are not alone also makes a huge difference. I am so honoured that I can play a part in the lives of Fibromyalgia sufferers.

Angelique Gilchrist's blog Fibro Ramblings

Her feature series: Faces & Stories of Fibromyalgia

Angelique Gilchrist