fibromyalgia

Leave a comment Posted on May 5, 2015May 5, 2015 Fibromyalgia

May12th.Org – the go to website for Fibromyalgia Awareness Day next week

Fibromyalgia Awareness Day 2015

A couple of weeks ago I received an email from a website called May 12th. You can visit them here.

The reason that I’m mentioning them today is four fold.

Firstly the blindly obvious fact that they are bothering to promote next week’s Fibromyalgia Awareness Day. I’ve been doing a few things myself which you can check out here. Not much but it is a start.

Secondly they are putting together a list of of events which mark Fibromyalgia Awareness Day. You can see them here https://docs.google.com/document/d/10Gi4ZR_2DMv6TxlQOMBdYpCHDbRwTCVHmVilZnk9naM/edit. It is a Google document which means that anyone can edit it. So we would be very grateful if you could update it with any events you are involved in, on or offline, which mark FMS Awareness Day. It would also be great if you would share this is family, friends and all members of the fibro and chronic pain community.

The other reasons is that the site itself does not limit itself to just fibromyalgia but also provides information and awareness about a number of closely linked but very much ignored medical conditions such as Gulf War Syndrome , Multiple Chemical Sensitivities and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is great to see an awareness site with the blinkers off and looking at the relationships between medical conditions.

The final reason I would love it for you to visit the site, and share it, is that it is not written by an overmighty NGO but rather by us. People who live with, and care about, our medical conditions and health. For me this is the future of healthcare and wellness in the long run. Not the tinkering about with a system with does not work for us.

PS If you have any FMS awareness resources you would like to share please feel free to use the comments box below to share with our readers!

2 Comments Posted on April 23, 2015March 18, 2017 Fibromyalgia

Fibromyalgia Awareness Day 2015 is May 12th = Please like and share to show your support.

Fibromyalgia Awareness Day 2015

As you may know by now 12th May is international Fibromyalgia Awareness Day. We have produced a Facebook Cover to mark the event. It would be great if you could use it on your profile for just one hour to help us promote the day.

If you have any plans or events for the day please do mention them in the comments box below.

Thanks very much in advance.

3 Comments Posted on March 20, 2015March 20, 2015 Arthritis, Fibromyalgia

Fibromyalgia and arthritis blogging. What ever happened to the fibro blogging community?

Yes I know an odd question for a blog which covers fibromyalgia and arthritis in some depth.

But let me explain (and ask for your help).

Fibromyalgia blogging

When the wonderful (and wacky) world of weblogging came into my life about 10 years ago it seemed that we could not move for citizen journalists writing on any and every subject that took their fancy. I was told about one blog which covered the history of the headgear of Roman Catholic priests before the Second Vatican Council.

But those days seem to be over especially in the whole area of healthcare and fibro in particular. To some extent this is due to the rise of social media like Twitter. Though I’m not certain how much insight you can get from 140 characters. But it does seem that there are far fewer blogs active than there were five years ago.

The reason I started thinking about this was by accident really.

A couple of days ago a lady called Catherine Manning dropped a link to her excellent blog about fibromyalgia and arthritis called “Old before my Time. You can check it out by clicking the link here.

Now I used to read Ms Manning’s blog on a very regular basis but realised that I’d not done so in a couple of years. Indeed we even published a cross post from her a few years ago. Indeed that applied to a lot of the blogs that I used to follow.

Which brings me to the reason for this post. What should I be reading online and where can I find it?

Please feel free to share the blogs you read (or even better the blogs you write) in the comments box below.

It will give both my readers and myself a great opportunity to find out what is going on out there.

And maybe it will help to prime the pump of the arthritis and fibromyalgia blogging communities.

Thanks very much in advance!

1 Comment Posted on January 16, 2015September 13, 2017 Fibromyalgia, Pain Management

Pain and Fibromyalgia – Where does it hurt?

Acupuncture and fibromyalgia

As we all know fibromyalgia is a very painful medical condition. Indeed it is the symptom which gets the most mentions in a lot of the research we have conducted over the years.

In particular members of the fibromyalgia community have localised as well as “all over” pain. Indeed people with fibromyalgia often have severe headaches and women have very painful periods.

But in this blog post and poll I would like to focus the area of fibromyalgia pain which could be referred as “tender points”. Or , put another way, parts of the body where people feel pain when pressure is applied. This is also called Allodynia.

Most often these pressure points will be found:-

back of the head
area between the shoulders
front of the neck
top of the chest
outside of the elbows
top and sides of the hips
insides of the knees

but of course their are others.

The aim of this blog is to allow our readers to share a bit more about their tender points. There are two ways you can help. Firstly it would be great if you could take the poll below.

Secondly we would love it if you could share how you treated the pain and the tenderness in the comments section below.

You might also be interested in some previous research we conducted into treatments for fibromyalgia here.

RobinKayeSkinner

I would love to say I was successful at treating the pain but it is all so temporary that is like a blip on the radar Just so painful some times just cant move and some days bed ridden..

12 Comments Posted on October 16, 2014February 7, 2017 Fatigue, Fibromyalgia, Pain Management, Patient Talk

Life with Fibromyalgia. Tips for living with Fibro from People with Fibro!

Fibromyalgia Awareness

A few months ago we ran a very successful discussion on our Facebook Page, called FibromyalgiaTalk, entitled “What advice would you give to a person who had just been diagnosed with fibromyalgia?”. We then covered some of the responses in a blog post which you can read here.

The responses were amazing both in terms of quantity and quality so we decided it would be useful to run a similar discussion asking for tips you might have about living with fibromyalgia.

Firstly I’d like to say thank you to the 250 people (so far) who have replied since we started the conversation on Monday. So we would love to share with you a few of the tips . It would be great if you would care to share any of your own in the comments box and the end of this blog post.

“Find a doctor who knows and treats fibromyalgia. Get lots of sleep. Ignore everyone else’s expectations of you and slow down on life. Rest, drink lots of water and TRY to stretch daily. Your friends and family will all give you ideas on what you should do to feel better–it might get annoying—just smile and know they are just trying to help! Hope this helps!!” was great advice from Jennifer!

Brittany was simple but to the point ” Reduce stress as much as possible, take hot baths and time for yourself”

Wendy was very sensible “I had to learn to forgive myself for not being “me” any more, most days I manage it! My usual advice still stands, be kind to yourself, learn how to pace and use the NO word when you need to x”. Another talked about pacing “When your having an almost pain free day and feel good , don’t push yourself because you will pay for it a few days later , sometimes with days of pain …”

One reader shared this great idea for a birthday present “Ask for gift vouchers for therapeutic massage for birthdays and Christmas it hurts a bit at first but you feel so good afterwards. Best present ever x”

Tricia was very practical “Natural Vitamin D3, make sure it’s D3, about 30-50,000 iu a week will make a tremendous difference. Most fibro sufferers are unable to absorb normally and are deficient. Magnesium is good. Take fish oil to go with the D3 and take K2. They enhance each other. Also, heat helps. Hot baths, and extra blanket, and warm sweater. Massages and chiropractic care are definitely a help. Yoga and exercise on your good days. Lastly, rest and reduce stress because these are our biggest triggers along with the weather. Rain is evil. Lol! Take care of yourself.”

And Shell talked about “Do your own research. Believe in yourself & write all of your issues down.”

Which, of course, is one of the aims of this post. So as we said earlier what should be added to this list of tips?

Please use the comments section below to share yours.