Gotta Laugh, Right?

I wouldn’t believe it unless I had experienced it…and guess what? I did.

I had to return to the hospital today to have my cast cracked open for flying. It took me half an hour to get from our villa to where we could catch a cab. Mum had bought a stool so I could sit on it to climb over the different size steps all around the villa. Hop, hop, sit, slide legs around, push myself back up, hop, hop, etc.

Got to the hospital and the surgeon was late again (yeah! I know! Doctors, right?) Then they had to saw into my cast – OMG! My leg is still swollen underneath. I screamed more from this little procedure than when I broke it. You know those sticks doctors use to look down your throat? I bit through 2 of them, trying to contain my pain.

Then it was ‘wait for meds and the report’ time. In total, it took 3 hours at the hospital despite having an appointment and the hospital calling me 3 times during the day to make sure that I was attending.

Finally, Mum and I hopped into a cab, via McDonalds, to go home.

We arrived and it was totally dark. I couldn’t even contemplate the path in the dark. The (wonderful) taxi driver and Mum carefully followed the pathway to find out what was wrong. Mum was sure she had left the lights on for our return. It seems we were out of electricity.

We phoned our host 3 times (except I had saved the number wrongly and we were calling our tailor!) I couldn’t eat any dinner because I was afraid that I would need to go to the toilet and wouldn’t make it in time – it really is a long way from the front to our villa using crutches and a stool.

Finally, we got through to our host’s girlfriend. She doesn’t drive and had to find a lift over to re-fill the electricity.

Back at the villa now – all I want to do is click my heels together and say ‘there’s no place like home!’

WARNING – Venting to Follow

I am currently in Bali – lucky me, right?

I scrimped and saved for 5 years so I could have 4 weeks of warmth, massages and relaxation. After 5 days, I fell and broke my ankle and leg – go me! Now I have to return home to have an operation.
These things happen, right?

This is not what has me pissed off (at least, at the moment).

I have been a member of a particular fibro site on FB for at least 2 years. I post pertinent information, answer questions when I can and so on – you know what I mean. There are also a variety of other types of posts from members, like

pic 1

and

pic 2

and

pic 4

and

pic 3

***names have been removed to protect identities

You get the idea, right?

So, today (after being blocked by FB for a month (long story but it involves this article) which explains why you have not heard from me) I posted the following:

flamingoes 1
TAKE ADVANTAGE OF MY BAD LUCK!
$1500 ONO

I have a fabulous 3 bedroom villa in Bali until August 23rd but (lucky me!) I have just broken my leg and have to come home.
So…does anyone want a cheap holiday in Bali?

  • Situated on a quiet street (Jalan Kresna), right on the border of Seminyak and Legian.
  • 3 bedrooms – all with their own bathrooms and king-sized beds!
  • Fabulous private pool – and we’ll leave you all our pool lounges!
  • Lovely host – Benjamin.
  • WIFI
  • Walking distance to most places (if you have 2 legs):
    • 2.2kms to Bali Deli
    • 2kms to Double 6 beach (via Jalan Arjuna (Double 6 street))
    • 2.1kms to Carrefour

The villa is advertised on AirB’n’B if you would like to check it out

DM for any further details.

It was deleted.

You would think that there might be some compassion for a fellow fibro sufferer; but no! the post had nothing to do with fibro so into the ether it was sent; despite the last four approved posts (above) not really associated with fibro, either.

20160802_162509Now, I am probably over-reacting but I am sitting in Bali besides a gorgeous pool that I cannot swim in, I am about 10 minutes away from some absolutely fabulous bargains but I cannot go shopping, I saved enough money to have a massage everyday but, guess what? I can’t do that either. I am stuck either on a lounge or in my bed at my villa with my mother (who has her arm in a sling after a shoulder operation – I was supposed to be looking after her), her partner (who is legally blind and more than partially deaf) and my uncle (the last man standing!) So I’m feeling pretty hard done by – wouldn’t you?

As such, and I know that they don’t give a shit, I am no longer a member of that group.

If you feel like venting today, please feel free to do so in the comments below – just let it all out!

P.S. Anyone want a cheap holiday?

 

Funny ☺But Sad 😓

This appeared on my Facebook feed so I reproduce, with permission (and some extra cartoons) for your (bitter-sweet) amusement

Top 10 Funny Living with Fibro Factors:

 

1. Hair dryers that look normal but actually weigh 3 tonnes when you go to dry your hair.

2. Having to allow extra time to cool off after showering because you’re now sweating bullets.

258. sleeping together

3. Sleeping under lots of blankets because you’re freezing but still needing the fan on because you are also too hot.

4. Thinking you were having a good day until you have to walk more than 8 steps and discover someone poured concrete into your legs when you weren’t looking

146. best exercise

 

304. smoke and mirrors

5. Trying not to get frustrated when people say “I thought you were getting better”…it’s a chronic condition, there is no better just good days, bad days and the ever dreaded flares.

6. Forgetting your children’s names…or why you came into the room…or how to drive…on brain fog days.

119. fibro fog

 

chronic comic 174

7. Trying to decide whether to be honest or just keep it simple when someone asks how you’re doing.

8. Mentally trying to weigh up if you are whinging too much about your fibro or not speaking up enough about what you are going through. Either way most people don’t understand.

85.second opinion

 

86. crawl into bed

9. Feeling exhausted all the time even when you get enough sleep OR not being able to sleep because pain is too much. Either way you’re still tired.

10. Knowing that you have to laugh at the absurdity of this condition because fibro has already stolen too many tears.

231. pleaSURES

 

100.1 pain in the ass

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.

Struggles Only #Exhaustipated People Understand

Just a little (“poke fun at ourselves”) fun from Nadia Sennet at SHE ‘SAID’

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Must. Stay. Awake.

I’m never more than a slow blink away from falling face-first into my laptop in a pile of drool and snores – I’m literally struggling to keep my eyes open writing this article.

If you also battle constantly feeling tired, the good news is, there’s usually a medical reason for it that can be resolved with appropriate treatment. For the unlucky ones of us though, the struggle is very real…

1. There is literally no place or position in which you couldn’t fall asleep.

2. Getting out of bed in the morning is HELL.

3. ALL forms of morning-time activity are slow torture.

4. ESPECIALLY extra-early morning meetings.

5. You’ve had to develop a repertoire of excuses for being late.

6. No speaking can take place until coffee has been consumed.

7. And one coffee is never, ever enough.

8. You have been known to fall asleep at your desk.

9. A comfy couch is your kryptonite.

10. You’ve turned down social events in favour of napping.

11. Weekend time = sleep time.

12. People who schedule brunch catch-ups earlier than 11am make you want to throat punch them.

13. Any form of exercise immediately signals your napping instincts.

14. You resort to snacking constantly to stay pepped up at work.

15. And if you don’t get your fix every few hours, severe hanger strikes (otherwise known as FEED ME OR I WILL CUT YOU).

16. Boozing always results in you crawling into the nearest bed or couch and dozing off.

17. You start to freak out if you’re not in bed by 10:30…

18. And as such, have been known to leave parties early because bed is calling.

19. People who interrupt your sleep inspire a special kind of rage.

20. You regularly zone out mid task and conversation because you’re too tired to think.

21. You’d literally choose sleep over sex without hesitation.

22. Your bed is your fave place in the world.

23. Let’s face it. If there was a way to make a career out of sleeping, you’d take it in a heartbeat.

Images via giphy.com and tumblr.com.

Do you relate to the struggle of always feeling tired?

 

Tank You, #Fibro

So I read this in News For America

Amazing news!

(for now…)

Fibromyalgia has, throughout history, been incredibly difficult to identify and diagnose because it appears, at first glance, to be something else since its symptoms, which include musculoskeletal pain, fatigue, mood swings, and memory loss, are fairly common.

To provide some perspective 1 in 70 people, mostly women, in the United States actually have fibromyalgia.

There is amazing news though, hyperbaric oxygen treatment has made some game changing progress in medicine for those who have this horrible condition. Researchers from Tel Aviv University found that women who tried hyperbaric oxygen treatments were able to reduce or entirely eliminate  their need for pain medication.

Researchers believe that the primary cause of fibromyalgia is a disruption of brain mechanisms that are responsible for processing pain;

“As a physician, the most important finding for me is that 70 percent of the patients could recover from their fibromyalgia symptoms. The most exciting finding for the world of research, however, is that we were able to map the malfunctioning brain regions responsible for the syndrome… The intake of [the pain medication they were taking] eased the pain but did not reverse the condition. But hyperbaric oxygen treatments did reverse the condition… Hyperbaric oxygen treatments are designed to address the actual cause of fibromyalgia – the brain pathology responsible for the syndrome. 

As you can see this is extraordinary news.

Doctor with Fibromyalgia Wishes People Understood

Reblogged from Weekly AmericaI'm A Doctor With Fibromyalgia. Here's What I Wish People Understood About It Hero Image

Fibromyalgia, a widely misunderstood illness, confuses and frustrates both patients and doctors alike. I know because I’ve seen it from both sides—as both a physician and a woman with the illness myself.

This common chronic disease is characterized by widespread muscle pain, fatigue, and brain fog. It’s estimated that 5 million Americans currently suffer from the disorder, and close to 90 percent of those diagnosed are women.

Still, there remains a lot of confusion about what the illness really is and how it’s treated. Here are five truths about fibromyalgia that are not widely known, even by most doctors:

1. Fibromyalgia is real and can be treated—but it requires a holistic approach.

Research on fibromyalgia has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it’s a “real” illness.

This changed in 2002, when a groundbreaking study showed abnormalities in how the brain processes pain in fibromyalgia. These brain-imaging studies gave the objective data to prove fibromyalgia was “real” and triggered a decade of intensive research resulting in three drugs approved by the FDA that dull pain signals.

Fibro fogBut those medications don’t treat the often more debilitating symptoms of fatigue and fuzzy thinking called “fibrofog.” To do that, doctors and patients have to be knowledgeable about different treatment options—especially holistic approaches such as making dietary changes to reduce inflammation or adding supplements to boost cellular energy production.

2. It’s no longer a complete mystery.

I often hear the myth repeated that “we don’t know what causes fibromyalgia.” Recent physician surveys reveal that most doctors still don’t know how to help their fibromyalgia patients—in spite of the existence of some very effective treatments. Fibromyalgia is often described in medical journals as “perplexing,” “mysterious,” and “confusing.”

The TV commercials that say fibromyalgia is a condition of hyperactive pain nerves don’t tell the whole story. In fact, pain-processing problems are only the tip of the iceberg. A much bigger factor is a stress (or danger) response that has gone haywire and is constantly on “red alert,” leading to a chain reaction that results in fatigue, brain fog, and muscle pain.

The only way to get lasting improvement in all of these symptoms is to systematically address the negative effects on the body of a chronic hyperactive stress response. A chronically activated stress response wreaks havoc by preventing deep sleep and keeping muscles tense, leading to pain and tenderness; impairing digestion and energy production; and throwing hormones out of balance. It also ultimately causes the pain-sensing nerves to increase the volume of their signals.

3. Fibromyalgia is primarily a sleep disorder.

Unfortunately, many doctors, even sleep specialists, are not aware of the sleep issues that come with fibromyalgia. But fibromyalgia is in many ways a sleep disorder, a state of chronic deep sleep deprivation. Studies have demonstrated over and over that patients experience inadequate deep sleep that is frequently interrupted by “wakeful” brain waves. This deep-sleep starvation contributes to the fatigue, muscle pain, and foggy thinking characteristic of the condition.

121. rise and shineTreating sleep is the key to treating fibromyalgia, and it’s where I see the most benefit in reducing pain, fatigue, and brain fog. Sleep must always be improved before any other treatment will work, so it’s vital to address this with your health care provider to treat hidden sleep problems like obstructive sleep apnea and then add medications and supplements to help restore normal deep sleep.

4. Most doctors don’t know much about fibromyalgia—and it’s not their fault.

315. internet connectionFibromyalgia is an orphan disease that is not claimed by any specialty and instead awkwardly straddles the fields of rheumatology, neurology, sleep, and pain medicine. The majority of care falls to overwhelmed primary care doctors who don’t have time to go searching for new treatment ideas among the sea of medical publications. The big medical journals neglect fibromyalgia. In fact, since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine, the most widely read medical publication in the world.

Since the busy primary care provider does not have time to actively search out new treatments for fibromyalgia, research has to be brought to their attention in some other way—namely by their patients. So in my new book, The FibroManual, I included a health care provider guide with research-supported medical guidance for patients to bring to their doctor’s attention.

5. There is no cure for fibromyalgia, but there are effective treatments.

There is no cure for fibromyalgia—yet. But we don’t have cures for many chronic illnesses, like diabetes and high blood pressure. What we do have are effective treatments that manage those diseases well enough that they are minimally detrimental to one’s health. And powerful treatments for fibromyalgia are out there as well.

When people ask me if I have recovered from fibromyalgia, I say, “Yes.” I’ve found ways to feel much better and minimize its impact on my life. Ultimately, I do still have fibromyalgia, and there is no magic bullet that completely eliminates all symptoms. It requires work, and I have learned that consistency in my self-care routine is essential to keeping my symptoms under control.

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First (this) then WOW!

This post may seem to be counter-intuitive to this very site BUT I think you might really, really like it.

Firstly, I was reading Melissa Swanson’s blog post about a new way to do a medical research:

MedNexus ~ A new way to do a medical research!

**This is a sponsored post**

MedNexus  

I was asked to try a new site for patients called MedNexus to research medical information.

I was excited to hear that there was a site for those of us looking for reliable medical information.  I remember when I was first diagnosed with fibromyalgia that I was a mad woman searching the internet for anything and everything about fibro and the “evil sidekicks” that it likes to bring along. I had no problem finding articles. The problem was that there was so much contradiction about diagnosis, treatment, management and more.

Currently there are approx. 10 million people in the United States living with fibromyalgia. They do not have the luxoury of being friends with some of the experts in the area of chronic pain and fibromyalgia who have helped me know where to look for legit information.

A site like MedNexus is needed for not just those people looking for medical information on fibromyalgia but for all medical conditions. MedNexus states that it is a medical search engine for patients – think “Google for Medicine”. They “believe having access to the right medical information can change someone’s life”.

So how easy is it to use?

The search was very simple to do. I simply typed in the word fibromyalgia in the search box. The search showed 3262 results. It is divided into the following categories;

  • Health Topics
  • Published Research
  • Ongoing Clinical Trials
  • Forum Discussions

Another search option is located on the front page giving you the option to choose Diagnosis, Treatment, Management and Rick Factors which will give you detailed information regarding those topics.

I am personally affiliated with 3 national groups that focus on chronic pain and fibromyalgia so I was curious as to how they decide what information to post because even though they do have a lot of great information I saw a few areas that could use improvement.

So, I decided to ask  Kevin Ann, PhD/Co-Founder & CTO of MedNexus “How they do decide what information to post?”

He told me that “At the moment, we are mainly using government sites and well-known patient organizations for the health info pages. We plan to include more sites and index more content in the coming weeks, with more input from users and advocates like yourself. As for journal articles, we pull from the top few percent of journals for the published research. For the forums, we’re pulling from a core group of the highest traffic forums.”

I believe that this site is going to be a great search engine for anyone wanting to research medical information. I have bookmarked their site and am looking forward to watching them grow and develop it.

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 and then I had a look at the site…

WOW!

Check it out to see what I mean.

BTW my part was not sponsored.

 

Feeling Broken?

NOTE: This post may be fun and informative BUT it may also offend some. If you are sensitive about very grown-up subjects, please avoid this post.

Many female FM sufferers have reported also suffering from Vaginismus. Vaginismus is defined as involuntary spasm/contraction/reflex of the muscles surrounding the entrance to the vagina, making penetration impossible and/or painful, which causes personal and/or relationship distress.

It is a very serious subject (so, please note, I am not making fun of the condition); however, I found this cartoon which deals with the subject a little more lightly.

2016-01-05-Vaginismus

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