Fibro Files Re-SHARE: 6 Strange Signs of Fibro

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6 Strange Signs of FIBRO

Above image from #fibrofiles facebook

Some of the strange signs of Fibromyalgia are a heightened sensitivity to all the senses: 

• TOUCH - that results in pain when being touched, even lightly.

• SMELL - that can trigger migraines

• SIGHT -  bright lights, or driving at night time affects eyesight & causes pain

• SOUND - too much can be overwhelming & cause anxiety, dizziness

• Fibro-Fog - "..includes a difficulty with word finding or substitution, loss of short-term memory, and occasionally even episodic disorientation that lasts for about 30 to 60 seconds." 

My favourite alternative treatments for Fibromyalgia: Magnesium, Mindfulness, Grounding

 My Favourite Alternative Treatments for Fibromyalgia:
 

1. MAGNESIUM:

I take a high strength magnesium tablet once daily, near bedtime to help with my cramping in my feet and my legs, sometimes I get cramping in my ribs as well which is just as painful as the ones on the top of my feet.

During a #fibroflare the magnesium feels like it's not working as well as it should be, however I know that the magnesium is working because there has been the occasion when I have not been able to afford buying a new bottle and as a result have had to go without it for a week at most. That was a week too long! Oh my gosh the cramping that happens without taking the magnesium is incredibly awful, not bearable.

2. MINDFULNESS:

Not long after first being diagnosed with Fibromyalgia I was accepted into a (newísh) and highly successful chronic pain course, here in South Australia; that is run by the head physiotherapist at Marion Physio her name is Julie Peacock and part of what I took part in involved mindfulness and gentle stretching which is included in their Advanced Pain Solutions group 8 week course. 

So through the retraining of the brain I learned that even our thoughts - positive and negative have an affect on our pain. Mindfulness as a form of therapy for Fibromyalgia can work when utilised and practised properly. 

"Mindfulness will help your mind become aware of what is happening in your body. It will allow a greater connection of how your thoughts impact on your body. You will learn to move again in a pain free way and create a calming of the nervous system. This can improve your body's ability to repair and be restored."

3. GROUNDING:

Grounding is something a bit unusual I suppose, more of a holistic somewhat spiritual form of treatment. Once you open up your conscious to the process it becomes almost natural to perform. I do feel though that you need to have more of a predisposition to being aware, being open to other levels of healing. Oddly enough this technique does involve some Mindfulness as well.

I like to spend time barefoot outdoors in contact with natural conductive surfaces, like grass or the earth (dirt). And when I am more intune with my body this technique feels wonderfully relaxing.

I had heard of this form of treatment long before being diagnosed with Fibro, through my psychologist - Emma Warne (best ever Psychologist in South Glenelg, South Australia.) I highly recommend her and her team at Mind Your Body. 

https://raisingchildren.net.au/guides/activity-guides/wellbeing/grounding-calming-exercise-children-teenagers

Inspiring Women

 Drinking: Water  |  Eating: Toobs

So I wanted to write a little about some inspirational women that have entered my life recently:

One of them being the beautiful Elise who I met through the #fibrofiles blog world on facebook earlier in 2021 and who is the business owner of Here's to Strength based here in Southern Adelaide. I feel we share some similarities in our individual journeys I will refrain from detailing them on here, except that we both have chronic pain from Endometriosis and Fibromyalgia. 

Elise has the most wonderful soul and is such a powerful inspiring woman I am very glad to have met her and to be following her passion. There are not many women who are like Elise, who are both pained by their health yet spreading happiness and strength to other women; and perhaps people in general. Please click on her web link up above in the first paragraph to read more about her and her Self Love Mission.

Oh and to purchase one of her lovely products to help you in your own chronic pain journey click on this link > products for chronic pain relief

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I have also been writing letters to a woman called Lea who I met through the #fashmates online fashion and art platform. We have been sharing stories about how different yet how similar our place in the world is. Like myself Lea suffers with chronic pains particular restless legs syndrome. It has been really nice writing to one another and share an interest in creating digital art sets within the Fashmates world.

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Another inspirational female writer is Caroline whom I follow on both facebook and (just tonight) instagram as well CW Poet Caroline writes the most inspirational and thoughtful words. Sometimes they are soul touching and other times they are saddening.

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And also The Empowered Woman on facebook they write encouraging posts.

And now to bed,

for me.

x

My 48 Day cycle post Contraceptive Pill & other ramblings

Listening to: Soft Pop & R&B on Spotify
Eating: Banana Walnut Muffin | Drinking: Green Tea

I had a tough week, spent most of it in bed with #Endometriosis pains and a period that has been coming every 48 days (now) since I was forced to stop taking the pill. My period was achy legs and thighs, migraines and no sleep. And of course heavy bleed with black clots.

I'm pretty sure (despite my GP's thoughts) I have started #perimenopause . The symptoms of which overlap with #Fibromyalgia a lot!

I was ever-so grateful that hubby stepped up and took over a lot of what I do around the house. It was unbelievably nice to have dinner made for me (and the family) every night. To know that I was not alone in looking after the household - including feeding the 2 dogs and the cat.

I spent Thursday mostly in bed still but got up in the arvo and then today I chose to support hubby on a scrap metal run. Granted I did not physically do much, I couldn't my hip bursitis was giving me no end of grief. Hauling poles onto the trailer in the gusty chill wind that came in over the southerly part of the sea at Goolwa Beach; Brrrr! that was the pick-up that made my body ache all over. And that all to knowing burn feeling in the legs like you've run a marathon. Ouchies as I carefully pulled my own legs up into the car afterwards, to head off to the next pick-up.

I'm most definitely not as strong as I used to be, and I really do still overestimate my strength. I think that would have to be one of the hardest things dealing with Fibro for me - is not being able to move a pot plant when I want to, and having to wait instead for hubby (occasionally my youngest son). I love being in the garden amongst my plants, but bending over once... is pushing it, bending over more than that and I'm going to be in agony shortly after.

I hate having to consider keeping a little in my battery tank (so to speak) so I can get back inside and wash my hands without being in too much pain.

In the car today, somewhere between Victor Harbour and Goolwa South I tried to brush some dog hair off of my pants, OMG did that hurt! My touch was light, non-existent, but it hurt. I remember explaining this to hubby. Sometimes I wonder if even he thinks it's insane, that I'm making it up. The stupid #fibrobody

Suffice to say I will more than likely be in a flare tomorrow - and tomorrow is wash day. I'm planning on thinking #happythoughts #pinkelephantsinleotards I do not want to feed that #fattyamigdala

[Shoutout to #Emmawarnepsychology ]

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As written originally on my facebook personal blog > https://www.facebook.com/bohemiansolitude/posts/116951824084486

HELPFUL LINKS:

Pelvic Pain

Endometriosis

4 Stages of Endo

Perimenopause

Women's Health

Social Media

 Listening to: Pete Murray "The Byron Sessions" 2013

I find the social media circus of fibro/endo etc.. a whirlwind of helpful advice, yet everytime I take a break from it then re-join groups and re-activate blogs etc.. I can't cope. My brain goes into overdrive, I know this sounds really weird but it's like my brain can't breathe. 

I long time ago I left all the Endometriosis facebook groups because so many women in there were downright nasty and "know-it-alls". I have since found the joining Chronic Pain groups people are generally a lot more friendly, caring and open to opinions. Just because one method works for you with Endo (for example) it does not mean it will then work for someone else. That's one of the issues with the Endo groups, but it's information overload with the fibro bloggers. I guess I really need to knuckle down and find a happy medium that's going to work for me. 

I am pleased that I have found another Australian who has Endometriosis and Fibromyalgia (among other things) like me. Some of you may already know of her The Disabled Diva .

Massages & Linden Tea

 Drinking: bottled water

Am in killer pain tonight, burning... aching... pains down my outer thighs, across my upper buttocks/lower back. Both hips.. so painful that it's all I can but cry to cope with the pain.

--

I wish I had a husband that gave me massages. I feel so sad about it, I never ask him for one (these days) because he doesn't give me a proper healing massage. I stopped getting ones from physio because people just don't understand my body - I cannot handle the deep tissue pressure of touch. It has to be a gentle massage. I think this is causing me a bit of resentment because it reminds me of an ex who would only give me a massage if I gave him a happy ending one..

I hate this. I hate fibromyalgia. It is the worst most awful thing I have had to suffer with. There is no medication that can relieve the pains of it. There is no restful sleep. There is daily pain on some level. I can't do many physical things these days - washing the dishes kills me, I had no empathy or anyone else tonight, not even my husband. I struggled to wash the dishes, to feed the dogs after dinner, to even make the dinner. I know exactly where I should have been - I should have been in bed, resting my body, smothered in heat bags. It would be so nice to feel hands touching my skin that relieved the pain I feel without hurting me in the process.

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I have been introduced to a tea brand that may assist with a decent night sleep - Twinings Sleep Well the main ingredient that does help with a restful sleep is Linden It suggests it may benefit inflammation and some pain as well as a restful sleep.

The first night I tried it I had one mug of tea, and it felt like i had been drugged, I literally sat on the couch and my eyes kept twitching shut. However when I went to bed I woke up an hour in, and still did not have a good night's sleep.

The second night I tried it, I had two mugs of the tea.. I drank the first one slowly, then got up and made another cuppa. That did the trick, I went to bed - woke up after about an hour (again) and then slept through the rest of the night. And woke up early the next day - too early, I felt so groggy. Good thing I was the passenger in the car and not driving as I drifted off to sleep. very easily.

I am going to do some more research into the Linden component particularly in regards to Fibromyalgia.

Migraines...

 Drinking: Black Tea | Eating: wholemeal toast with Vegemite

I hate migraines! I hate a lot of things come to think of it, my body's neurological system is a wreck. I've been having migraines - the classic ones with the tummy ache and nausea first as well as the aura ones - those latter ones are awful. I get like a kaleidoscope of flashing lights for what seems like ages either out of both eyes or just the one eye - usually my good eye. I can still kind of see but not so great, and it leaves me feeling dizzy and overwhelmed. I was trying to hang up a load of washing last Friday when one started. It didn't dawn on me that it was going to be a migraine because I rarely get aura ones. Wouldn't have mattered anyway because I can't take any painkillers to help reduce the pain.

I can't take pain killers for anything at the moment! Nothing I take seems to be working. Is it like a massive bad batch or something?? So I put up with the aches and pains of it all, whether it be Endometriosis, Fibromyalgia or migraine! If I had to do a would you rather scenario here I would rather Endo and Fibro at the same time than a bloody migraine.

Anyway I finally got in to see my doctor, it's taken like a month of Sunday's to make it there as I kept on picking up a bug. And that meant that I would have to face a barrage of Covid related questions and more than likely not be allowed to have a face-to-face appointment; of which I have been desperately needing to find out my blood test results and query the cyst on the brain that I read in the report from the MRI I had a few weeks ago now. AND to do a new mental health plan.

So... on telling my doctor about my migraines she told me she wants me to stop taking the pill. The Pill! The Contraceptive Pill!! For various reasons - mainly because it is probably why I am getting migraines all the time now, which puts me at much greater risk of a stroke (among other things). I never was taking the pill to stop me from getting pregnant - I started it way back when I was in my early twenties (prior to sex even becoming a factor). It was recommended to me by a sexual health social worker through SHINE with whom I was seeing in regards to a really awful internet date that happened in the late 1990s. Yeah my first date from a dude I met online - screwed me up for many years. One could say - at least I survived it - because I very nearly didn't. 

Anyway I have been taking the Pill for about 25 years now I reacon and suddenly being told to not take it is like a slap in the face - I think I am going to listen to this advice this time is because of the enormous risk I now have facing me if I do continue to take the pill. But to walk away from my doctor with no pain relief from the migraines is a tad disconcerting. I shouldn't have to be - used to pain; there should be some kind of relief out there for me. I can't take Codeine and I'm allergic to Penicillin.

I started writing this blog entry last night and I guess I should really finish up writing it tonight. I have so much to say on this topic. My head and my neck are killing me and have been for well over 14 days now. And yeah I am used to the intensity of this pain and I've had enough of it on top of everything else. 

I am on night 2 of not having the pill. I was the kind of woman that skipped her periods indefinitely as my way of escaping the Endo pains - it would work for the most part until some invisible cycle whooshed around again and the pains would be agonising. This past year or so has been Endo pains combined with Fibro pains. It's been hell! There's been no relief - and now it's going to get worse and there's nothing I can do about it. It's going to be Endo pains plus the irregular heavy bleeding and everything else. 

 

The Pain Handbook

This book is the most brilliant piece of information I have read recently, 

it was printed in Adelaide, South Australia.

The explain PAIN & protectometer

No matter what your diagnosis or condition, 

nor how long you have had your pain for,

learning about PAIN is helpful.

However it does require 3 things:

Patience

Persistence

Courage

~

This book is based on scientific evidence,

written by a Neuroscience clinician - Lorimer Moseley and

David Butler an educator with clinical and research roles.

They have over 60 years between them of experience in this field.

Through reading this book we can understand:

- why we are hurting

- be able to tell others why

- know what methods of movement/exercise to use

- no how to help our pain

- be able to help others

- discover our dims & sims

(dim = danger in me message & safety in me message)

fibro flare

Omg my whole body is on fire, a few days away in the Barossa are supposed to be relaxing! Instead I am so tired and hurting so very much. 

My knees, my fingers, hands, feet, shoulders, hips, back... everything.  The bed in the motel is hard and  uncomfortable. I don't feel like me here.

Sleep does not come to those burning in pain. Pain meds not working this weekend.

I so desperately need "me time".

I need time out from everyone else's emotions and thoughts AND needs.

My brain and my empathetic nature is in overload.

My head hurts - deep inside and out.

I can't seem to get any time to myself, any true time.

I'm tired of being there for everyone.

I guess for you to imagine what it's like, think of a million voices whispering in your head all at once, some talking loud, some talking louder.

And your body, aching, sore, tender, burning.

--

I have been playing a mind game of late:

I imagine myself packing a small bag, and heading down south for the weekend.

I am - just me - by myself.

No digital devices.

A place to recapture me.

To breathe again.

--

It's so incredibly hard living daily with Fibro and Endo and PTSD AND having to constantly be on the watch for ALL of my garden plants and house decor; in case number 9 decides to destroy something. AGAIN.

I need to check out, somehow.

The violence of January 11th has not settled within me, and has been proven since that is still an issue in the home - sadly.

- Odé to be an innocent child again, growing up in a world where digital devices hardly existed.

 

Fibro Flare

 

OMFG! I am regretting walking so far this morning. 

My bursitis in my right hip is angry!

I was really surprised when hubby said at the dinner table that I should just keep pushing past the pain. His comment made me feel angry. I attempted to explain to him why I actually shouldn't push past the pain, I don't think it helped at all. I managed to cook a nice meal for dinner though - beef & beetroot patties with penné and a really nice Greek style dressing. I think personally I would have eaten it in a salad with some greens, but having three kids it's just easier and more cost efficient to use pasta. 

I was exhausted after eating though - well more like a HUGE tiredness over my entire body, I literally could not move, even my feet were in pain. I've been limping because of my (right) hip bursitis, yet I managed to cook dinner for the family and feed both our dogs and the cat. All the while completely forgetting about the sprinkler I had on the front lawn. Ffs! 

Fibro Flare  |  

Slept fairly heavy (for a change) last night, I really must stop watching Criminal Minds right before bed - I can usually handle the graphic content on many of the episodes, however lately it is affecting me considerably. I don't really want to be having nightmares about slaughtering live animals particularly right before my school morning alarm goes off. "Good morning beautiful, how was your night.... " my alarm sound is a song. Sometimes it will go off and Henry (who still sleeps in our bed at age 6!) will sing a long with it. Such a sweety.

I discovered this morning that hubby had no jobs booked in today - not good for business but rather nice for us to spend some quality time together. Something we nearly never manage to find. I've had a terrible case of allergies this week - damn wild grasses in our area. We decided to go for a walk on our local beach - the tide was out, the sun shining and the sea was relatively flat - so beautiful. Yesss! We finally made it to the beach this Summer. Last year 2020 we didn't. A few years ago when Henry (our 6 year old) was smaller we often went for a regular walk along the beach - in the water one way, then the sand on the way back.

It was an absolutely beautiful walk - I set myself a goal and managed to push myself to make it without too much pain from my fibromyalgia. Walking in the water itself - nearly to knee height certainly helps build strength. I am feeling extremely fatigued now - an hour or so post-beach walk. Must keep myself awake, perhaps time for some lunch.

Moana Beach, South Australia | Exercise and Fibromyalgia | Disturbing Nightmares | 

Introduction about my life as an artist and in chronic pain

An Introduction:

I created this blog because I needed a place to share about my life....

Primarily, I am a freelance artist - the Bnspyrd name has been around on the internet for many years, providing free resources (like vintage photos, child-stock, textures and background borders) for other artists to use in their artistic endeavours. However although I dearly love creating and sharing these I have been unable to for many years, and this saddens me; for the most part I have little to no motivation to create and have faced many a hurdle. #artistsblock

Yesterday, I celebrated (I don't think I can really call it a celebration) our 6 year Wedding Anniversary, we spent a brief amount of time together sharing our memories of the odd Summer's day that we came together as one; in the garden of our (then) home. Which is just a stone's throw from where we are now - in the seaside suburb of Seaford, South Australia. It does not seem like 6 years have passed - yet we have already been planning for our 10 year Wedding Anniversary, especially ALL the special touches we will include that we missed out on with our rather rushed original Wedding. The wedding had a vintage theme.

Anyhow, I have #Fibromyalgia - I was officially diagnosed in late 2019 via a Rheumatologist and confirmed via a chronic pain clinic/physiotherapist in early 2020. I then went on to do a chronic pain course for 8 weeks (which thankfully was subsidised by a scholarship and covered by Medicare). The course included access to a dietitian/nutritionist, a psychologist, Pilates/physio gym equipment, personal trainers that specialise in chronic pain and injuries. It was a very informative course run by the Marion Physiotherapy team. And yes I would highly recommend the chronic pain course - not for sufferers of Fibromyalgia though.

I also have #Endometriosis officially diagnosed in early 2001 but the pains experienced through out my childhood.

So, combining both Endo and Fibro with the newísh addition to the family - a (then 8 years old) step-son who was forced into our care one weekend and has numerous issues - mostly behavioural; my life is like walking on egg-shells EVERY day! Imagine if you had to be hypervigilient all the time? Well that's what it's like with him in the house, it is so incredibly exhausting. I will write more about him another time.

I have a daughter from a previous domestic violence relationship which lasted 9 years, she was just 3 years old when I managed to leave (also another story for another post). She is currently 14 years old, and a son who is 6 years old from my marriage.

My blog will primarily be about my life surrounding the challenges of living with these chronic illnesses, combined with PTSD and any of the aforementioned. It will also include many positive highlights of my journey through and then out of this mess. It will include my self-discovery through my art which I will likely share on this platform and provide links as to where you can also view it online. I would also very much like to hear from any other bloggers who may face the same or similar life hurdles as I am; please feel free to leave your blog link in the comments section on this post.

To get through the hardest journey you need to take only one step at a time, but we must keep on stepping. (Chinese Proverbs)

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Fibromyalgia  |  Domestic Violence  |  Endometriosis  |  PTSD