It’s a Very #Fibro Christmas Sing-a-Long

sing

84. maxine_stressOn the first day of Christmas, FIBRO gave to me:
A bout of Anxiety

 

On the second day of Christmas, FIBRO gave to me:
Two New Trigger Points
and A bout of Anxiety

 

On the third day of Christmas, FIBRO gave to me:
Three Days of Heartburn
Two New Trigger Points
A bout of Anxiety

 

223. fibro

On the fourth day of Christmas, FIBRO gave to me:
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the fifth day of 86. crawl into bedChristmas, FIBRO gave to me:
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the sixth day of Christmas, FIBRO gave to me:
74. prescriptionsSix Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

 

 

On the seventh day of Christmas, FIBRO gave to me:
68. HatSeven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

 

 

On the eighth day of Christmas, FIBRO gave to me:
205. centredTotal Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the ninth day of Christmas, FIBRO gave to me:
292.FM LovesongNine Painful Cuddles
Total Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the tenth day of Christmas, FIBRO gave to me:
Paresthesia in my (ten) Fingers
Nine Painful Cuddles203. acupuncture
Total Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the eleventh day of Christmas, FIBRO gave to me:
Eleven ‘New Cures’ proffered
Paresthesia in my (ten) Fingers
Nine Painful Cuddlesxmas
Total Disequilibrium
Seven Tension Headaches
Six Medications
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

 

On the twelfth day of Christmas, FIBRO gave to me:
Twelve Judgmental Relatives
Eleven ‘New Cures’ proffered
Paresthesia in my (ten) Fingers
Nine Painful Cuddles
Total Disequilibrium
Seven Tension Headaches
Six Medications124. indifferent friends
Five Sleepless Nights
Four Doctors’ Visits
Three Days of Heartburn
Two New Trigger Points
and A bout of Anxiety

Got #Fibromyalgia?

Previous studies have shown that fibromyalgia is associated with low level of physical activity and exercise, which may lead to an increased risk of osteoporosis. However, studies of bone mineral density (BMD) in fibromyalgia have shown conflicting results.

So… Sikarin Upala, Wai Chung Yong and Anawin Sanguankeo conducted a systematic review and meta-analysis to better characterize the association between FM and BMD. A comprehensive search of the databases MEDLINE and EMBASE was performed from inception through May 2016. The inclusion criterion was the observational studies’ blah blah blah blah blah blah. Blah blah blah blah; blah, blah blah blah! Blah blah blah blah blah blah blah. Blah blah blah blah; blah, blah blah blah!

When translated: Patients with FMS should be assessed for risk of osteoporosis.

How Many do You do?

Q. What do talking, showering, and doing laundry have in common?

A. They’re all activities that seem simple to most people, but can be thoroughly exhausting for us.

TheMighty.com partnered with the National Fibromyalgia Association to discover what everyday activities we engage in (or don’t engage in) because of fibromyalgia. How many do you do? Got any to add?

  1. “Not showering every day or keeping up with laundry. People see widget 5me as lazy but in reality, I’m prioritizing what I can do each day. Otherwise I’d be out for a month. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks.”
  2. “I keep a lot of my curtains closed and the brightness on devices on lowest; when I’m having a flare light hurts me so much. My smell and hearing are too sensitive. Repetitive noises are agony to me.”
  3. “Napping. I hate sleeping during the day. I feel miserable when I nap, but if I don’t lie down, I will fall down. Some of my friends love to nap and envy me when I tell them I spent the afternoon in bed. To me, though, napping is just one more way my life is not my own now.”
  4. I clench my jaw really tightly when in pain (probably just looks like I’m pulling weird faces!). Also people think I’m strange for not drinking alcohol, but it reacts with my meds and a hangover feels a million times worse!”
  5. “I rub my hands a lot and sometimes my feet. Most people don’t think this is anything more than self-comfort. The reality is, the weakness and pain in my hands, arms and legs is something I deal with every day.”
  6. “This weekend I was at a wedding. Most people at my table were dancing and were trying to tell me to join them. They don’t know I was bravely smiling through the pain and that it was a two-hour battle just to get dressed up and show up. There was no strength left for dancing.”
  7. “Google-Earth-ing everywhere I have to go (or am considering going) and have never been before to assess if the building would have stairs (inside and out) and a parking spot nearby.”
  8. “I wear a lot of fuzzy socks because I have cold feet issues. Having fibromyalgia means when I get cold my pain gets elevated even worse. Ugg boots are also helpful because they are soft and warm.”
  9. “Avoiding family gatherings as much as possible. I come from a very big and loud family who likes to hug. I’m surrounded by all of them and the kids are running a round and everyone is talking laughing and having a good time. No one realizes how huge that sensory overload is for me.”
  10. “A prime example is ‘test-driving’ chairs to find the most comfortable one. At work, there are several office chairs in the main work area that are used by various people on all shifts, so they get moved around and swapped for each other pretty often. When I’m working in that area, I sit in each chair for a few seconds to see which one is going to cause me the least amount of pain throughout the day (the chairs are identical, but some are older/used more than others). People who don’t know I have fibro may find it odd or humorous, but I think even people who do know seem to find it ‘amusing’ at times.”
  11. 119-fibro-fog“I’m soon to be 27 and have the memory of a goldfish. I mix up words and stutter so bad. People don’t realize I have fibromyalgia and this is why I do this.”
  12. “Taking a deep breath as I reach the entrance door at work, putting a massive smile on my face. Chest out, shoulders back… keeping on my ‘I’m OK’ face until I crumble back into my car at the end of the shift.”
  13. “I really don’t talk much because I have fibro fog and find it hard to carry on a conversation. So this sometimes makes me appear disinterested in others, but that isn’t the case at all. I find it hard to find the words to say.”
  14. “When I have to stand for more than a couple of minutes I rock back and forth to distract myself from the pain. Most think it’s just a nervous habit, but in essence it’s my pain control.”
  15. Giving up my social life. I go to work, and I come home. That’s all I can manage to do. I have to choose between going to church, family activities, and meeting with friends over rest. And lately, rest wins.”
  16. “Sometimes I’m having a really bad flare and can’t get out. Rather than admitting my weakness, I say the kids are sick or something, so no harm, no foul. It makes me uncomfortable admitting it, and it makes them feel even more uncomfortable/angry/disappointed, etc.”
  17. “I walk out of work when my shift ends and drive right home. I don’t say goodbye to anyone because if we end up chatting it’ll be even longer until I get to lounge at home and rest.”
  18. “Turning down TVs and radios when people come in the room. The noise sensitivity makes sounds get louder the more there are different sounds. Each added person, instead of making it harder to hear something, amplifies the sounds.”
  19. “When you take an extra day off work from a holiday weekend. It’s not to just play around and be lazy. It takes me days to recover from travel, from cooking the Thanksgiving turkey, from Christmas shopping, even from just sitting in an uncomfortable chair eating a holiday meal with family and friends.”
  20. “In college, people don’t realize I always tell them, ‘I have to go to the bathroom, be right up with you guys’ because I don’t want anyone looking at me me while I slowly climb my painful way upstairs. So I always make up an excuse to be the last one to go up, and alone.”
  21. “I text instead of calling because I’m not sure how I’ll sound over the phone, and I can make the text sound positive without acting.”
  22. “I take a few minutes every so often when I’m out, like when I go to the bathroom or pop to the kitchen, and just sit and gather myself. Allow myself to feel the exhaustion and pain then breathe and go back in.”

The (very-close-to) Perfect Mattress

I tweeted a promotion for a coupon code yesterday. I wanted to link it to an article, that I was sure that I had written, about my mattress. It appears that I didn’t write one; although, I really should have written one because I love my mattress.

I have a Koala Mattress. The website states:

we’ve combined world-first materials and advanced sleep technology to create the perfect mattress specifically for Aussie conditions. Our weather is different to anywhere else in the world, so your mattress should be too,

120-nightwhich pretty much sounds like EVERY other mattress promotion. However, Koala is so confident you’ll love your Koala Mattress that if you’re not getting the best sleep of your life in the first 120 nights they’ll pick it up for free and give you every cent of your money back.  Now this sounded pretty good.

deliverySo, back in February, I bought a new mattress. Firstly, there is free express delivery Australia wide and a free 4-hour delivery service in Sydney, Melbourne, Perth, Brisbane and Adelaide. You can have a new bed tomorrow night! The next surprise is that the mattress arrives rolled up in a long rectangular box (taller than me and a great box to turn into a rocket ship!). As soon as you open it, the mattress is ready to sleep on. (Depending on how bad a day you’re having, you might be ready to lie down then and there.)

Personally, I dressed my bed in some of my favourite linen and waited until bedtime.

I crawled into bed (I only just realised that most people don’t actually crawl into bed; but I have a whole bed to myself so I get to crawl into the middle) and that’s when it happened – my new mattress hugged me! Really! It felt like a cloud was holding me, like that first bite into a pink-iced Krispy Kreme doughnut, like coming home.

I made everyone who visited me jump into the middle – I didn’t want to spoil the surprise – the bed hugged everyone (my AusPost lady, the handyman, my Mommy, my neighbour).

I’m not going to repeat the whole website here. I just wanted to share my experience with a Koala mattress. It isn’t the fibro or insomnia cure we’re all looking for; but, so far, this is the best mattress that I have experienced. Needless to say, I did not return my mattress after 120 days. I still love my mattress…and every night, I get a hug.

adopt…oh, I forgot…Koala adopts one sick and injured koala with every mattress purchase.

Do you need a new mattress? Maybe now’s the time to try one out!

100-off

Have I Got a Deal for YOU!

Yesterday, I spent time in an infra-red sauna then a flotation pod. I’m going again on Friday…so I have decided to tell you about it AFTER my second session.

Until then, I spoke to Symee at The Orchard Prahran and he is offering ALL my readers a deal:

special-offer-2

Click HERE

 

It’s Getting Hot in Here!

3a905ae900000578-3953366-remedy_lady_gaga_shared_with_fans_some_of_the_ways_she_deals_wit-m-108_1479598663224So, tomorrow, as well as a flotation session, I’ll be exploring the growing body of evidence confirming the amazing benefits of infrared sauna therapy (and not just Lady Gaga’s recent testimonial). The heat from infrared saunas is powerful and deep, yet surprisingly gentle and easy to tolerate at the same time. Studies show that, in addition to deeply heating your tissues and inducing an intense sweat to help detoxify, infrared sauna therapy causes other health-promoting changes in the body that have lead to a significant decrease in pain and other symptoms of fibromyalgia.

Japanese researchers studied the effects of infrared sauna sessions in 13 female fibromyalgia patients. Patients received infrared sauna therapy in cabins heated to 60°c (140°F) once per day for 15 minutes, two or five days a week. After the sauna sessions, the patients went into a warm room and were covered with a blanket from the neck down to keep them warm for 30 minutes.

All patients’ pain was significantly reduced by about half after the first session and the effect became lasting after about ten treatments. At that time, pain was decreased by 20% to 78%!

In another study in 44 female fibromyalgia patients, three months of sauna therapy three times a week, along with underwater exercise twice a week, decreased pain and other symptoms by 33% to 77%. And the improvements lasted: pain was still 28% to 68% improved six months after the end of the study.

Exercise performance also significantly improved for those in the sauna group. In a six-minute walking test, they were able to walk almost twice as far without pain after the six weeks of infrared sauna use, while those in the control group experienced no change in walking distance.

With all this research suggesting significant pain reduction, it is no wonder infrared saunas are being installed in doctor’s offices, spas, wellness centres, and private homes around the world at an increasing rate. If you’re interested in all-natural, non-drug pain treatment, it may well be worth checking on the availability of an infrared sauna near you (a Google search would do it).

At this point, it’s not clear what the optimal infrared sauna temperature, duration, and frequency is to lessen pain. The Japanese recommend shorter, more frequent sauna sessions. Daily or almost-daily 15-minutes sessions are always followed by a 30-minute warming period during which time you lie wrapped in a blanket.

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Float Like a Butterfly

As I told you in my last post, I am going to a 90-minute flotation session on Tuesday. (For those in Melbourne, you can get a 90-Minute Relaxation Package with Flotation Session and Infrared Therapy for $55 from LivingSocial.com!!!!)

podFlotation REST is a form of Reduced Environmental Stimulation Therapy (REST) that uses a shallow pool of heavy water. The water is made heavy by super-saturating it with Epsom Salt (MgSO4) to the point that a person floats on his or her back effortlessly on the surface of the water like a cork. The water is heated to skin temperature and the pool is enclosed in a lightproof, soundproof environment.

This device, invented by Dr John C Lilly, effectively removes external stimulation and creates a neutral environment that gives the feeling that one is floating comfortably in space. In using this type of therapy, you are given a private room with a shower where you can undress, shower; and step into the pool enclosure. After sitting in the water and lying back to float on the surface, you can then turn out the lights.

The reduced stimulation encountered in the flotation pool refocuses the individual’s attention to internal stimuli. At first this includes the novel sensations of floating effortlessly in darkness and quiet. The sensations of the body become much more salient making flotation REST a walk-in biofeedback device. This natural biofeedback initiates a self-regulation process leading toward relaxation.

This relaxation is augmented by the trans-cutaneous absorption of magnesium that elicits the release of muscle tension. As physical sensations become less salient mental activity can come to the fore. For those not used to being alone with their thoughts this can be difficult. However, even unpleasant thoughts become more palatable as the body enters a more deeply relaxed state. Eventually even the parade of thought subsides and the mind arrives at a meditative state.

A few years ago, anecdotes began to circulate from people with fibromyalgia, that float tanks provided remarkable relief for them. This caught the attention of float researcher Rod Borrie and his collaborators, who noted the remarkable alignment between the effects and benefits of flotation, and the symptoms of fibromyalgia: floating

In 2011 Borrie, Tamara Russell, and colleagues started the Fibromyalgia Flotation Project, with no money, all volunteers, to try to test this treatment on as scientific a basis as possible.  Is there an immediate effect from the float sessions, and if so, does it last?

They sought volunteer subjects with fibromyalgia, and float centres willing to contribute free time in their tanks.  Each volunteer took three hour-long float sessions over three weeks, and answered a questionnaire before and after each session about ten variables:

  • Pain
  • Stress Well-being
  • Bothered by pain
  • Energy
  • Relaxation
  • Muscular tension
  • Sadness
  • Anxiety
  • Freedom of movement

When they discussed intermediate results at the 2012 Float Conference, they had had 81 participants across five countries (US, UK, SWE, GER, NL).

The results were astonishingly positive:  “Without exception, the immediate intervention effects (average pre-post change) are highly significant for all variables in the expected direction (e.g., pain ratings decrease on average by 2.3 points on an 11 point scale from pre- to post-intervention).”  There was no control group in the first phase.

(Want to see some figures and pretty pictures?)

These results are exciting, but caution is due as this was not a randomized, controlled study.  One particular item to be cautious about is drop-outs — if the people who didn’t see benefits were to drop out, that alone could cause an impression of improvement of symptoms in the later sessions.

pod-2The Fibromyalgia Flotation Project is continuing into a second phase to follow up on these very promising results, still with no funding.  They’re trying to push both for greater numbers of participants, to better persuade the medical establishment, and also for a longer test period (ten weeks instead of three) to see how sustainable the results are.  It’s all being organized via the internet; sign-up and more information is at Fibromyalgia Flotation Project.

And, hopefully, after Tuesday, I will have my own successful(?) story to tell.

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Fibro – GAGA

Lady Gaga is well known for her unconventional…um…ways.

She is less known as a chronic pain sufferer.

Lady Gaga recently opened up about her chronic pain. (It’s been said that she suffers from Fibromyalgia but I have not found any confirming sources) She shared some of her methods for easing her pain in a series of posts on Instagram: some unusual and some just like ours.

Lada Gaga recently shared on Instagram details about her “frustrating” battle with chronic pain, along with two photos of herself getting treatment.

 

After an outpouring of support from her Instagram followers, Lady Gaga posted another photo of herself on Friday, showing the singer sitting in an infrared sauna wrapped in an emergency blanket. It’s a remedy she uses to relieve pain and inflammation.

3A905AE900000578-3953366-Remedy_Lady_Gaga_shared_with_fans_some_of_the_ways_she_deals_wit-m-108_1479598663224.jpg

“I was so overwhelmed by the empathy, confessions & personal stories of chronic pain in response to my previous post I thought what the hell. Maybe I should just share some of my personal remedies I’ve acquired over the past five years. Everyone’s body and condition is different U should consult w ure Dr. but what the heck here we go!” she wrote.

“When my body goes into a spasm one thing I find really helps is infrared sauna. I’ve invested in one. They come in a large box form as well as a low coffin-like form and even some like electric blankets! You can also look around your community for a infrared sauna parlor or homeopathic center that has one.

“I combine this treatment with marley silver emergency blankets (seen in the photo) that trap in the heat and are very cheap, reusable and effective for detox as well as weight loss!”

Lady Gaga likes to alternate between hot and cold therapy.

“In order to not overheat my system and cause more inflammation i follow this with either a VERY cold bath, ice bath (if u can stand it, it’s worth it) or the most environmentally savvy way is to keep many reusable cold packs in the freezer (or frozen peas’ n carrots’!) and pack them around the body in all areas of pain,” she wrote.

Lada Gaga reportedly suffers from synovitis, a painful inflammation of the joints, that apparently stems from a hip injury she suffered during a concert.

After years of hiding her chronic pain from fans and even her own staff, Lady Gaga had surgery in 2013. She is now one of the few celebrities to speak openly about her experience with chronic pain.

Luckily for me, I recently found an online deal from LivingSocial.com.au that entitles me to a 90-Minute Flotation Session followed by an Infrared Therapy Session. Hopefully, I’ll be be one of these people who can share their successful methods of dealing with this pain.

“Hope this helps some of you, it helps me to keep doing my passion, job and the things I love even on days when I feel like I can’t get out of bed. Love you and thank you for all your positive messages,” wrote Lady Gaga.

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If You Poison Us, Do We Not Die?

industries_health_research and development_ Tarantula venom could provide relief from Irritable Bowel Syndrome_bannerTARANTULA venom is being used to help develop pain relief medications for people suffering from Irritable Bowel Syndrome.

Researchers from The University of Adelaide in South Australia found that a specific peptide in the spider venom could be used to understand how people sense pain. Two toxins were found to specifically target Nav 1.1, a voltage-gated sodium channel in the nervous system to initiate the electrical impulses that signal pain.

Associate Professor Stuart Brierley said the study demonstrated that Nav 1.1 contributed to mechanical, but not thermal, pain signalling.

“Using the highly specific peptide in the spider toxin we were able to work out how pain nerve fibres signal in a healthy situation and also in chronic abdominal pain such as what you see in Irritable Bowel Syndrome (IBS),” Assoc Prof Brierley said.

“We found that the spider toxin was able to cause a lot more pain in the IBS state than what it was in the healthy state. It’s important to note that because of the studies we should be able to develop treatments for IBS based pain – blockers for Nav 1.1 that only target the peripheral and don’t go to the central nervous system.”

106. cure #1

The causes of IBS are still unknown but it affects about 10 per cent of people globally (and lots of FMS patients). Chronic abdominal pain is the predominant symptom of IBS.

Assoc Prof Brierley said that until recently there had not been much research into the role of the Nav 1.1 channel subtype on the peripheral nervous system.

“Over a long period of time we were able to work out that one particular compound was in the venom that you could isolate, separate out and acted on this Nav 1.1 channel,” he said. “It gave us a highly specific and highly selective tool to look at its role in pain.”

Many nociceptors or pain sensing nerve fibres use Nav channels to initiate the electrical impulses that signal pain. Although the study focused on the peripheral nervous system, the findings also pose potential implications for central nervous system diseases such as epilepsy (and FMS)

The study was a collaboration between the University of Adelaide, Flinders University, South Australian Health and Medical Research Institute (SAHMRI), the University of Queensland, The University of California, John Hopkins University and the Medical College of Wisconsin. It was published in Nature last week.

take it

Escaping from the Cold

There’s only 6 weeks until I escape to Bali for 4 weeks and, of course, I’m a little worried about the travelling.

One of the people, from a Facebook group that I belong to, just went to Jamaica for two weeks then spent 5 days in L.A. She, too, wasn’t sure how she would cope with Fibro and travelling.

Her travel advice-

♣ Ask your travel agent to request disability assistance. We had quite a few change-overs at different airports but, thanks to the request, there was staff waiting with a wheel chair or a golf trolley to take me around airport. I don’t usually need a wheelchair but waiting in line to check in, or waiting to go through customs or security can take a long time and having the wheelchair made a huge difference. It even meant getting through was quicker as the disabled are given priority. Also, getting from one side of the airport to another was made a lot easier. The staff knew the layout of airport better than me and in all honesty there’s no way I could have walked that far and still caught my flights on time. Some airports are massive!

♣ I’m not sure how to do it but I saw a lady on my flight who had problems with her legs and had reserved seats to put her leg up on. If you can, try to get seating that allows leg space. Fibro is painful enough so having space to move your legs, stretch, etc makes a difference.

♣ We flew Qantas to and from the States and then American Airlines. The differences in seating space was surprising. If I had of known in advance, I would have paid extra for ‘premium economic seats’ on American Airlines. Sitting for hours in bad positions, unable to move or stretch triggered my pain. It’s worth paying a bit extra, if you can, for comfort as discomfort can have a domino effect.

♣ Being tired from travelling, in pain and arriving in a foreign country in the middle of the night can be very disorienting under the best conditions. Try to make things as easy for yourself as you can. I pre-booked shuttles to hotels in advance which worked out ok at one location, but when we arrived in L.A. I felt so unwell I couldn’t think straight let alone try to find the shuttle stop. We ended up paying for a cab to hotel simply because I wasn’t in the right frame of mind, in too much pain from the bad seats on the plane; and too tired. I have since learnt that I didn’t have to pre-book shuttles as you can pay on the spot and, sometimes, the cab works out cheaper!

♣ If using AirB’n’B to book accommodation let the place know you have mobility issues and make sure the dwelling is easy to access. I had to cancel our accommodation on arrival as it was physically impossible for me to access the stairs up to the residence and the cliff it was located on would have been too hard to walk up every day (photos of location and descriptions were misleading!).

Blue-LAgoon♣ Plan rest days into your schedule. It can be hard when you’re on holidays and wanting to see as much as you can but the best way to avoid a flare is to pace yourself. I made sure that after a really busy day we’d have a lazy day. Also, try to pick one or two ‘must do’ things. For me, it was swimming in the Blue Lagoon in Jamaica. It was physically hard to get to the location but I managed it and we spent about an hour swimming. I was happy as I’d accomplished the one thing I had my heart on. Because of the limitations of Fibromyalgia you may not be able to do all the tourist-y things or activities others do, but if you pick one or two ‘must dos’ for your trip, you’ll feel great when you do it and any other activities you manage is a bonus!!

So, with this advice in hand, I’m off to relax by a pool with a freshly squeezed juice.