Free Webinar on Managing Fibromyalgia Symptoms

about sue

Susan Ingebretson, a fibromyalgia patient, author of the best-selling book FibroWHYalgia & contributor to our own Living Well with Fibromyalgia, will host a free webinar, to share her story about her path to improving fibromyalgia symptoms.

Strategies for Reducing Symptoms with Sue Ingebretson will take place at 1 pm EST on November 29. 

Ingebretson, like many of us, found it impossible to maintain an adequate quality of life with fibromyalgia. So, she set out to research ways of making an holistic and significant improvement in her life. Eventually, she ended up writing a book about what she had always looked for to manage her own condition.

In the webinar, Ingebretson will tell her story, review natural treatments, explain what is currently lacking in most patients’ attempts at recovery; and, present a work plan called “restoration trio,”  a practical and realistic work plan to maintain a lifestyle that can improve fibromyalgia symptoms over time.

We already know that non-pharmacologic therapies and lifestyle changes have shown that a multi-disciplinary approach offers better healthcare outcomes, and that patient engagement in the care process is essential.

Nonetheless, physicians often rely on traditional medical practices to treat the condition and do not always seek the patient’s feedback, says Ingebretson.

Ingebretson worked to identify lifestyle changes that could help in the healing process of a chronically ill body and mind from a perspective that most professionals do not necessarily have.

A copy of FibroWHYalgia will be raffled off among participants in the webinar.

Ingebretson is a certified holistic healthcare practitioner and program director of the Fibromyalgia and Chronic Pain Center at California State University. She also has a blog, where news and topics promoting positive lifestyle changes and healthy living are discussed.

For more details about the webinar, please contact Adi Bein at: adi.bein@genefo.com

MCS in FMS & ME/CFS

This post contains affiliate links. I may be rewarded financially for any purchases you might make.

Multiple chemical sensitivity (MCS), also known as idiopathic environmental intolerance (IEI), is common in people with fibromyalgia. Some researchers believe they are all part of a family of illnesses, which some have called “functional somatic syndromes” or “environmental illness.” A term now gaining prominence is “central sensitivity syndromes.”
In central sensitivity syndromes, the central nervous system becomes hyper-responsive to certain stimuli. Those stimuli can include pain, temperature, light, and, especially in the case of MCS, chemicals.

Someone with MCS has negative reactions to even small amounts of chemical substances in their environment. While chemicals can make just about anyone sick if they’re at high-enough levels, in MCS, even low amounts lead to symptoms.

Common problem substances include:

  • Fragrances, such as in cleaning products, perfumes, candles, and hygiene products,
  • Cigarette smoke,
  • Paint fumes,
  • Gasoline fumes,
  • Industrial chemicals,
  • Medications,
  • Chemicals in tap water; and
  • Chemicals and dyes in clothing.

Some of these things trigger symptoms with their smells or upon physical contact, while others must be ingested. Not everyone with MCS is sensitive to the same things: one person may be unable to be in the room with someone smoking or wearing scented lotion, but be fine at the gas station; meanwhile, someone else can handle hygiene-product fragrances but gets sick around pesticides and cleaning products.

Someone else may have problems with all of those things.

Fuzzy Logic USA sell pure (no chemical dyes or treatment) organic clothing and accessories. NOT all organic products are created equal. Many use organic materials then go on to use harsh chemicals and colorants to make them look pretty. Unfortunately, people with fibro and other skin sensitivities can suffer from allergic reactions.

Check out the entire range of Organic Cotton Colours clothing
Fuzzy Logic USA

The urban lifestyle and the many chemicals and electromagnetic fields to which we are subjected daily have grown, exponentially.

Currently, there are millions of affected peoples with different pathologies triggered to chemical smells, people that feel discomfort when they use certain clothing or are close to low frequency electromagnetic fields. MCS has been recognized for a couple of decades, but it’s still a fairly controversial diagnosis. It’s also an illness that’s gone through multiple names. Along with environmental illness, it’s been called chemical injury or chemical sensitivity.

It is known that there is a direct relationship between fibro, MCS and electrosensitivity (extreme sensitivity to magnetic fields). Organic Cotton Colours have become aware, through the direct testimony of people affected, of the use of their products as a palliative measure. The absolute lack of chemicals in their clothes during the entire process, the refusal to use dyes and the extreme care in the making, have become an instrument facilitating the daily life of a increasingly high percentage of the population.

It’s 25 years of experience and dedication to customers, hundreds of testimonies from concerned associations, naturalists, clinics. Organic Cotton Colours wants to serve as a support platform for a more sustainable lifestyle, healthy and natural.

Fuzzy Logic USA

We don’t have any drugs or medical treatments for MCS in general. However, some people may have success with treatments aimed at specific sensitivities.

The primary way to manage MCS is to avoid the things that make you sick. Fuzzy Logic USA is providing a way for you to avoid chemicals and dyes.

Fibro Falling

“How did you break your ankle?”

I get asked that a lot: I’m still limping, 7 months later. I was walking in Bali and I fell. No motor bikes. No bicycles. No alcohol. No bumpy footpaths. No drugs. Just walking. I fell.

Gait and balance are severely impaired in women with fibromyalgia, according to “Altered Functional Performance in Patients with Fibromyalgia” published in the journal Frontiers in Human Neuroscience.

Only women were included in this study as the vast majority (80%-90%) of people affected by fibromyalgia are women. The study showed that walking speed was significantly reduced in women with fibromyalgia, compared to women without pain, probably due to the reduction in stride length and frequency.

When the researchers analysed the association of gait and balance impairment with functional performance and the level of pain, they found that high levels of pain, depression, stiffness, anxiety, and fatigue (DUH!) were the main parameters associated with reduced gait and balance.

Finally, the researchers reported that they observed an abnormal pattern of body sways during balance tasks in fibromyalgia patients. They thought this could be associated with changes in the motor control system, and might explain why fibromyalgia patients experience a higher rate of falls.

Overall, the findings highlighted the relevant role of postural control and balance for daily activity functioning in fibromyalgia patients.

So, I’m doing hydrotherapy, pilates, deep-water running, recumbent cycling and indoor rowing.

Bring on the strong core muscles, a 6-pack and balance!

Home (ever-so) Sweet Home

I left Australia 2 weeks ago for a 4 week holiday in Bali (that I had saved up 5 years for).

I had the best intentions. I was going to walk everyday. I was going to do yoga. I was going to quit smoking. I was going to drink lots of (bottled) water. I was going to look after my Mommy who was recuperating from an operation. I could do all of these things because I always feel better in Bali – maybe it’s the type of heat or the humidity? I don’t care why – it just feels good!

For the first 5 days, I walked approximately 4kms a day. I felt great. It doesn’t feel like such a great distance when there are so many new things to see. I didn’t quite get to the yoga. I was down to about 5 cigarettes a day. I banned soft drinks from our villa…

20160802_162509And 2 days after my mother arrived, I broke my leg and ankle – not on a motorcycle or doing anything dangerous – just walking along the street.

So Mommy has spent more time looking after me (at least, she can walk) than me looking after her. Needless to say, no more long walks. I never made it to yoga. Hours of sitting in one place, looking at a gorgeous pool that I can’t swim in, has diminished my desire to quit smoking (actually, not my desire; more my willpower!) And the sugar in Coke (and lemon meringue pies) makes me feel better…temporarily.

I don’t think either Mommy or I have ever said this before, after a holiday (which, if you do the maths, we are leaving 2 weeks early) but I am so glad to be going home!

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?

 

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?

 

Catching Up

I haven’t really checked in with you guys recently so I’m going to try to catch you up ASAP. So, what’s up with me?

Housemate

After a very long (and oh-so-complicated) 18 months, my housemate has left. We had an on and off relationship for a while which ended with us being ‘just friends.’ Anyway, it’s been a month since he left; and it’s like this great weight has been lifted from my shoulders. It had gotten to the stage where everything I said was misinterpreted by him – so we just kept fighting. I didn’t realise how hard it had become: I was trying to be so careful with what (or if) I spoke to him; whereas, when we first met, I remember how much fun, and how I used to feel when we were hanging out.Boris and flowers I really hadn’t realised how much our relationship had changed until I was away from it (permanently).

We are supposed to still be mates BUT he posted my key back to me, didn’t help with cleaning up after him and his cat (it’s taken me a month to clean everything alone!) and hasn’t wanted to talk to me all month…I don’t need friends like that!

Garage Sale

With all the cleaning, I decided it was time for a clear-out. I emptied my house out (as did some of my neighbours) and we had a multiple household sale. 20150724_182631It was huge…and very hard work.

We ran around, the night before, putting out all of our signs. Then it was up at 6am. (I had practiced getting up early for the two days prior).

Although we all made some money and got to know each other, I really don’t think I’ll be doing that again!

Million Dollar Minute

Four days later (and more practice at getting up early), I arose at 5am so I could wake up properly, get ready and go to Channel 7 studios for the opportunity to appear on Million Dollar Minute.

profileI made it (and, for those in Australia, I will be on TV on Thursday 20th August at 5.30pm). I can’t tell you what happened – non-disclosure statements and all that – but I can tell you that, if you don’t watch on the 20th, you won’t see me again!

It was great fun and I met a lot of very clever people.

After all of that, I crashed (of course) and I really have had not the energy (spoons) to do much more than sit on the couch for the last 2 weeks. However, I am building up to some more energetic activities.

Rescue Dog

With the cat (and Simon) gone, I have decided that I would like a dog. I have never had a dog before and it has to be a particular kind of dog as I live in a 2 bedroom unit with, only, a small courtyard and I can’t walk particularly fast or long distances. I would prefer to rescue a dog BUT, with my particular requirements, this may not be possible.

I am religiously perusing the rescue dog sites (as well as nearly being ripped off by 2 interstate people who were looking to re-dogs).

This is Coco - a pomeranian/chihuahua mix.

This is Coco – a pomeranian/chihuahua mix.

This is Rocky, a maltese mix.

This is Rocky, a maltese mix.

I’ll let you know how it goes.

Daiichi Sankyo Research Study

Last week, I wrote about the Daiichi Sankyo research study. I have decided (after consultation with my GP) that I will be signing up. The first part is a blind study so I’ll be telling you about how I feel, if I am accepted – I have to give up my Lyrica and Sertraline (scary!)

LIVING WELL with FIBROMYALGIA

The next issue of LIVING WELL with FIBROMYALGIA is due out September 1st. It has been a VERY difficult issue as our contributors appear to be slowly disappearing so, sadly, unless I can get some more volunteers, the September issue will be the last one. If you want to write for us, please email me at contributions@fibromodem.com.

Now you’re all caught up. What’s going on with you?

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