fibro

2 Comments Posted on Arthritis, Fibromyalgia

What advice would you give to a person who had just been diagnosed with fibromyalgia?

Advice for people with fibromyalgia

Advice for people with fibromyalgia

As many of you know by now one of the objectives of this blog is to provide a space where people with fibromyalgia can share their experiences.

So to facilitate this we ran a Vox Pop on our Facebook page FibromyalgiaTalk. Vox Pops are where we start a conversation on the page and then share the results here on the page.

So a couple of days ago we asked our members the question “What advice would you give to a person who had just been diagnosed with fibromyalgia?”

The results were very interesting and we would like to thank everyone who took part. One of the most liked comments and one I think is very true was:-

“Educate yourself and don’t depend on the info just from your doctor.”

But also

“Take one day at a time. If it’s a bad day, be kind to yourself, tomorrow may be better. Try to be positive when you can, it stops you going crazy, and surround yourself with good people, who understand what “it’s just a bad fibro day! ” means. These things take time, but you can get there. Never lose hope”

“Stay as strong as you can and read read read up on Fibromyalgia … and pace yourself… and last but not least join groups like this one and talk to others that CAN relate. ♡”

” When you need rest, then rest! It will perk you up more than anything to give your body the rest it needs. I might go a day or two where I sleep so much it’s crazy, but I will finally wake up and feel so much better. Take care of yourself, period!”

“Sudden weather changes, it can be cold or hot. Rain, snow, etc. it can be near or far (barometric) , air and fans can be a killer and any artificial sweaters or caffeine can affect you.”

“Get regular massages! Find a therapist who specializes in pressure points.Don’t feel guilty. It’s not a luxury or indulgence, it’s necessary!”

” It will take a while to get the mix of meds right…be greatfull for everything good in yer life because that is what gets you through the bad times. Love and do as much as ya can because there will be a day you will not be able to do those things. Keep this in yer thoughts it won’t always work but it helps 80-90 percent of the time.
Laugh when you can
Apologise when you need to
And let go of things you cannot change”

” Don’t stop pushing yourself and insist on living a full life. Go to work and take full part of family life. If you ever stop, you want begin again. Take your meds, get enough rest, and for the most part, ignore the pain.”

” Dont compare yourself to another because no two cases are alike plus no one has your body! You have to pay attention to your self for your triggers, how long you can do this and that for. Finding the right meds, doctors, holistic helps more then people think. The key is you! If you know something us not right, but the doctor tells you otherwise don’t listen. You know your body better then anyone keep fighting for what you know in your heart. I learned a lot about spirit, prayer, love is easier to carry then hate. We have to heal ourselves, because the doctor’s can’t do it only manage. Please bypass the angry why me phase and start on spirit learn about your chakras. Fibro might not even be your right diagnosis research everything you can to heal your, spirit, mind, and body”

” Find yourself a great rheumatologist (they specialize in inflammatory disorders such as fibro and lupus). Educate yourself, then your family and friends! Try new things (meds, yoga, foods). Do what’s best for your body. Keep fighting and soft hugs! Xoxoxo”

“Get MRIs in the trigger point areas to rule out disc degenerative disease. Because I’m pretty positive your going to have it. I’m not convinced Fibro is an actual disease. They say i have it , all 18 trigger points, but I’ve had MRI in each location and I’ve got osteoarthritis, disc degenerative, protruding discs all or at least 1 of the above. I am pretty sure its just a name they made up for folks who have too much going on in the body to fix. This way they don’t have too.”

“You know more about your illness than a doctor. YOU are the expert not them. Also, animals are fantastic to have around”

and finally

“Don’t despair as you’re not alone “

So what would your advice be?

Please feel free to share in the comments section below.

Thanks for reading and sharing!

3 Comments Posted on Fibromyalgia

Fibromyalgia – Have you suffered from stigma attached to your Fibromyalgia?

Fibromyalgia and stigma

Fibromyalgia and stigma

Over the last few years this blog has look a few times at the kinds of discrimination face by people with various medical condition. Indeed according to our poll run last year over 70% of our readers have faced dicrimination at work because of health problems.

So I was very interested to read an article published earlier this month in Communities Digital News entitled “The fibromyalgia stigma: When law enforcement, not pain management, wins” You can read Paul Mountjoy’s article on their site here.

He argues ” A patient who mentions the “F” word, or fibromyalgia syndrome (FMS), to most primary care physicians, hospital residents, specialists and even pain management clinics, is liable to be labeled as a ‘drug seeker’and not a serious patient.”

Certainly this has been the experience of many patients with fibro, diagnosed or undiagnosed.

But i was wondering to what extent it applies to our readers. It would be great if you could take our poll where we look in more detail at the question of a stigma associated with fibromyalgia.

It would be great if you could use the comments box below to share your story in more detail.

Many thanks in advance.


1 Comment Posted on Fibromyalgia, Patient Talk

Fibromyalgia is real – Help us spread Fibromyalgia awareness by liking and sharing Donnee Spencer’s brilliant fibro butterfly!

Donnee Spencer has produce this amazing picture to help promote Fibromyalgia awareness.

Fibromyalgia Awareness

Fibromyalgia Awareness

Fibromyalgia is very close to my heart since my earliest days researching the opinions of people with fibro.  One of the things we discovered was that even a decade ago was that my doctors still did not believe in the existence of fibromyalgia.

Which means that fibromyalgia awareness is still of the highest importance.

You can see Donnee’s other healthcare awareness graphics here

7 Comments Posted on Fibromyalgia, Patient Talk

Fibromyalgia and household gadgets. What household gadget has been most useful to you as a member of the fibromyalgia community?

Serious question!

Fibromyalgia and household gadgets

Fibromyalgia and household gadgets

People talk a lot about therapies for fibro and ME etc and certainly they are very important.

But we all often forget the little things.

So I was wondering as a member of the fibromyalgia community what household item have you found the most useful?

It could be a bit of kit which helps you open jars or maybe a way of cutting the grass on the lawn which does not cause too much fatigue.

What ever it is we would love it if you would share in the comments box below. Also could you tell us what you use the gadget for please?

Thanks very much in advance.

6 Comments Posted on Fibromyalgia, Patient Talk

Now Updated – Fibromyalgia Tattoos – Why not share yours?

A few months ago Sheely shared a picture of a fibromyalgia and cancer tattoo she had recently had completed. She said “I thought i would share my finished tattoo. Thinking of all those who are suffering XXX big hugs xxxx”

Shelly's Fibromyalgia Tattoo

Shelly’s Fibromyalgia Tattoo

We we thought we would take this opportunity to share it with our readers and to find out if anyone else might care to share their FMS body art.

Medical and healthcare related tattoo seem to be popular for two reasons. For people with diabetes it is a great tool to let ambulance people, nurses and doctors know about their condition in case of diabetes related coma or a car accident.

Within the fibromyalgia community on the other hand tattoos are used as a great way of increasing awareness of fibro and, in some cases, for showing support for a loved one.

PatientTalk.Org thought it would be a good idea to provide a blog post where our readers could share their fibromyalgia tattoos

So please feel free to post a picture of your multiple sclerosis tattoos in the comments section of this blog. If this proves a problem you can email your picture to us at info@patienttalk.org and we will post them on your behalf.