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’

lrg_Ornamental_Divider__Englische_Linie

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.

strip

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.

cropped-fibro-small.jpg

 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

Untitled

You Only Live Twice

Agent 007 and the secret Japanese company Daiichi Sankyo must find and stop the true culprit of a series of attacks on visual and auditory regions of the brain in fibromyalgia patients.

live twice

Guess what I did today!

After only 5 hours sleep (I was up ‘til 3am with friends drinking vodka), I went to an appointment, stopped at the nursery to pick up some plants and soil, did some gardening, played with Kimba, finished the laundry and made some important phone-calls. Pretty cool, huh?

The appointment I went to was for another drug trial check-up. I bounced in, a little hung-over but full of beans. I’m feeling like the old me – could this be a second chance at my life?

The doctor and nurse practitioner looked on kinda stunned. (Remember, none of us know exactly what drug I’m taking.) I’m kinda stunned…on Sunday, I realised that I was happy – really happy – and I don’t know when I last felt happiness. I guess antidepressants just keep you on an even keel and you don’t realise that you’re not happy; you just know that you no longer feel so bad. I find myself singing to the radio where, before, I couldn’t handle the radio even being on.

Now, I may be the only person in the world feeling this kind of effect but I hope not. I would love all of you to start feeling this well. BUT, right now (3 weeks into the trial), I’m calling MIRACLE!

NOTE: Emeritus Research is still recruiting for the study, if anybody is interested. Click for  the Consent Form and information. Contact Daiichi using this email address – SM_DS5565_FM_Info@incresearch.com.

As well as the 1000 person study in the US and Canada, Daiichi is also recruiting in:

  • Campse and Coffs Harbour, NSW, Australia;
  • Maroochydore, Sherwood and Southport, Queensland, Australia;
  • Hobart, Tasmania, Australia;
  • Malvern East, Victoria, Australia;
  • Tallin and Tartu, Estonia;
  • Baldone, Jekabpils, Liepaja, Ogre and Riga, Latvia;
  • Auckland, Hamilton, Nelson, Tauranga and Wellington, New Zealand;
  • Banska Bystrica, Bratislava and Dubnica Nad Vahom, Slovakia; and,
  • Reading, Berkshire; Chesterfield, Derbyshire; Wellingborough, Northamptonshire: Atherstone, Warwickshire; and
  • Belfast, United Kingdom.

Posts in this series:

strip

Thunderball

007 heads to Malvern East to recover Good Health and Energy stolen by SPECTRE agent nicknamed Fibromyalgia in an international extortion scheme.

I have now been on the Daiichi Sankyo sanctioned medication for 7 days. It would be absolutely fantastic if my medication was the placebo because I’m feeling pretty damn good; and that would mean that my Fibromyalgia was gone.20151002_132317

090915 Kimba pot 1Today I woke up, took Kimba (my puppy) out for some play, did a load of washing, hung it out in the sun; and folded some dry laundry. A pretty good morning! So, I doubt that I’m on the placebo.

It hasn’t all been smooth sailing, though. A couple of nights ago, I had to put some ointment in a place that we don’t talk about in good company. It’s a reoccurrence of an ‘accident’ that happened quite a while ago. The wonderful ointment for this lovely and embarrassing condition has the possible (and very probable for us) side effects of headaches and dizziness. Ta Da! Two minutes after application, stabbing pain in the left side of my head – not happy, Jan! The minimal amount of Panadol that I am permitted (in the research study) couldn’t touch the pain. I knew that if I could just get rid of the headache (I was sure the headache was from the ointment and not the new drugs), I’d be okay. The headache (and extreme light sensitivity – you know how it is) lasted 3 days.

Today, I woke up…energised! Bring on the good feelings!

 

NOTE: Emeritus Research is still recruiting for the study, if anybody is interested. Click for  the Consent Form and information. Contact Daiichi using this email address – SM_DS5565_FM_Info@incresearch.com.

As well as the 1000 person study in the US and Canada, Daiichi is also recruiting in:

  • Campse and Coffs Harbour, NSW, Australia;
  • Maroochydore, Sherwood and Southport, Queensland, Australia;
  • Hobart, Tasmania, Australia;
  • Malvern East, Victoria, Australia;
  • Tallin and Tartu, Estonia;
  • Baldone, Jekabpils, Liepaja, Ogre and Riga, Latvia;
  • Auckland, Hamilton, Nelson, Tauranga and Wellington, New Zealand;
  • Banska Bystrica, Bratislava and Dubnica Nad Vahom, Slovakia; and,
  • Reading, Berkshire; Chesterfield, Derbyshire; Wellingborough, Northamptonshire: Atherstone, Warwickshire; and
  • Belfast, United Kingdom.

Posts in this series:

strip

From Japan With Love

007 willingly falls into an assassination ploy involving a naive Russian Japanese pharmaceutical company in order to retrieve a cure for Fibromyalgia that was stolen by SPECTRE.

russia

I’ve been keeping an electronic diary for the research study. Each morning, it asks me what is the highest level of pain I have experienced over the past 24 hours. Yes, I hate that question…and now I get to answer it at least once a day.

By the time I started the diary, I had not had any pain meds (except Panadol) for 4 days. Bloody! Bloody! I had forgotten about the stiffness and inability to sleep so on Friday, after 3 hours sleep, I thought: well, I haven’t been in this kind of pain in a very long time (it’s funny how I forget how bad the pain actually was at its worse) but it’s not a 9 or 10 – I’m not in hospital so I answered:

pain

On Saturday, the mind-blowing headaches in the bones above and below my eyes were back. Bummer! I had forgotten about those; but, I thought: well, I haven’t been in this kind of pain in a very long time but it’s not a 9 or 10 – I’m not in hospital so I answered:

pain

On Sunday, the costochondritis returned. I lay on my couch all day under a heated blanket; but, I thought: well, I haven’t been in this kind of pain in a very long time but it’s not a 9 or 10 – I’m not in hospital so I answered:

pain

On Monday, my stomach and lower back began spasming. Oh, here comes the irritable everything syndrome. I thought: well, I haven’t been in this kind of pain in a very long time but it’s not a 9 or 10 – I’m not in hospital so I answered:

pain

On Tuesday, I had a funeral so I didn’t fill in anything all day – I was afraid to take my electronic diary with me because I couldn’t work out how to turn off the alarm.

On Wednesday and Thursday, my hands and feet felt (but didn’t look) swollen and full (I can’t think of any other word), so uncomfortably full so, I thought: well, I haven’t been in this kind of pain in a very long time but it’s not a 9 or 10 – I’m not in hospital so I answered:

pain

Each day the pain had gotten worse but I had started too high on the scale. It was never the worst pain I have ever experienced but, each day should have been higher than the day before.

Maybe it’s time to consider a different way to ask the question? Maybe it should be, if yesterday was a 5, how much pain have you experienced in the last 24 hours? And then, is it more (or less) pain than yesterday?

NOTE: Emeritus Research is still recruiting for the study, if anybody is interested. Click for  the Consent Form and information. Contact Daiichi using this email address – SM_DS5565_FM_Info@incresearch.com.

As well as the 1000 person study in the US and Canada, Daiichi is also recruiting in:

  • Campse and Coffs Harbour, NSW, Australia;
  • Maroochydore, Sherwood and Southport, Queensland, Australia;
  • Hobart, Tasmania, Australia;
  • Malvern East, Victoria, Australia;
  • Tallin and Tartu, Estonia;
  • Baldone, Jekabpils, Liepaja, Ogre and Riga, Latvia;
  • Auckland, Hamilton, Nelson, Tauranga and Wellington, New Zealand;
  • Banska Bystrica, Bratislava and Dubnica Nad Vahom, Slovakia; and,
  • Reading, Berkshire; Chesterfield, Derbyshire; Wellingborough, Northamptonshire: Atherstone, Warwickshire; and
  • Belfast, United Kingdom.

Posts in this series:

strip

Dr No (or Not Yet)

A resourceful Australian agent seeks the cure to the persistent symptoms of Fibromyalgia (…and the disruption of the American space program!)Dr No

I’m part of the study!…Not sure what part, though.

No longer is Lyrica, Voltaren, Tramadol, Endone or anything stronger than Panadol living in my pill organiser. I have been weened off everything.

Today, I went for my second appointment at Emeritus Research. I had pretty much written-off my weekend, just in case I had side effects from whichever drug they put me on but (please press)

Today I was shown how to use my electronic diary…and that’s it. How disappointing: I have to wait ‘til next week before I start whichever regime I have been randomly chosen to undertake. I will be (randomly) assigned to one of 4 groups: Placebo, 300mg Lyrica, 15mg Mirogabalin or 30mg Miroglabin. There will be regular check-ups for the entire time.

So, until next week…

NOTE: Emeritus Research is still recruiting for the study, if anybody is interested. Click for  the Consent Form and information. Contact Daiichi using this email address – SM_DS5565_FM_Info@incresearch.com.

As well as the 1000 person study in the US and Canada, Daiichi is also recruiting in:

  • Campse and Coffs Harbour, NSW, Australia;
  • Maroochydore, Sherwood and Southport, Queensland, Australia;
  • Hobart, Tasmania, Australia;
  • Malvern East, Victoria, Australia;
  • Tallin and Tartu, Estonia;
  • Baldone, Jekabpils, Liepaja, Ogre and Riga, Latvia;
  • Auckland, Hamilton, Nelson, Tauranga and Wellington, New Zealand;
  • Banska Bystrica, Bratislava and Dubnica Nad Vahom, Slovakia; and,
  • Reading, Berkshire; Chesterfield, Derbyshire; Wellingborough, Northamptonshire: Atherstone, Warwickshire; and
  • Belfast, United Kingdom.

strip