What is your worst symptom of Rheumatoid Arthritis? Please share at our latest poll!


Rheumatoid Arthritis

Rheumatoid Arthritis

As some of you may know my late grandmother suffered , through most of her life with severe Rheumatoid Arthritis (RA).

As a child it is hard to understand all the various symptoms of Rheumatoid Arthritis she lived with and how they impacted upon the totality of her lifestyle. Certainly RA put massive strain on her marriage.

If you has asked me at the time I would have said that mobility was her biggest issue. Indeed she was housebound for the last 15 or so years of her life. The perhaps pain. She died 25 years ago when pain management was much more primitive that it is now.

But with the benefit of hindsight I going to suggest something rather different. I’d say now depression. She came from a generation which did not “mention these things”. Only after her death did I find out that she had been hospitalised a number of time for depression during the forties and fifties. Due in part to, of course, to the pressures of the war but also, I’m certain, to her RA.

Thinking about this I wondered to what extent her experience was similar to yours. To achieve this I was wondering if you could take part in the poll below which asks “What is your worst symptom of Rheumatoid Arthritis?”


If you would like it would be great if you could share more of your RA story in the comments section below. If we have missed out your worst symptom of RA in the poll please could you mention it in the comments section as well!

Many thanks in advance!


September is Pain Awareness Month #goyellow #PainAwarenessMonth

Pain Awareness Month

Pain Awareness Month

As you may know September is Pain Awareness Month. We want to highlight what is happening in Wisconsin because it givers a great example of how to act globally. Also we want to show our support for the “Go Yellow” social media awareness campaign.

In fact Wisconsin Gov. Scott Walker has proclaimed September as Pain Awareness Month. According to the U.S.
Bureau of Labor Statistics, chronic pain is the nation’s primary cause of lost workdays. It affects more people than
cancer, heart disease and diabetes combined, with over 100 million Americans suffering from it. Pain management has been a particular focus of this blog with a special interest in multiple sclerosis and fibromyalgia.

To raise awareness of chronic pain and its treatment, Advanced Pain Management (APM), the Wisconsin chapter of the American Society for Pain Management Nursing (ASPMN) and the American Chronic Pain Association (ACPA) joined efforts to get the proclamation by the Office of the Governor . Through the proclamation, doctors with APM and representatives of ASPMN and ACPA hope to facilitate an improved quality of life for those suffering from pain and increase their access to appropriate pain management treatment.

“Pain is a costly epidemic that causes millions of Americans to suffer and millions of dollars’ worth of employee productivity to be lost,” said Dr. Yogendra Bharat, medical director of Advanced Pain Management. “Pain Awareness Month is intended to get Wisconsinites to recognize the symptoms of pain and get appropriate relief so they don’t have to miss work or other activities.”

According to Bharat, the most common type of pain is lower back pain, followed by severe headaches or migraines. It is estimated that 80 percent of Americans will suffer from back pain at some point in their lives. Organizations supporting the Pain Awareness Month initiative will conduct a “Go Yellow” social media campaign, encouraging the public to raise awareness during September.

Advanced Pain Management is one of the largest pain management groups in the country, with more than 30 board-certified/eligible physicians offering the most advanced techniques for pain control. Advanced Pain Management physicians operate out of more than 40 locations in Wisconsin, including metro Milwaukee, the greater Madison area, Racine, Sheboygan and Green Bay, as well as in Mankato, Minn. You can find Advanced Pain
Management online at www.apmhealth.com.

Indeed they have asked up to share the infographic below which we would ask you to pass on as well.

Pain Awareness Month

Pain Awareness Month

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!

The menopause and chronic illness – What effect did the menopause and pre-menopause have on your main medical condition?


The menopause and chronic illness

The menopause and chronic illness

A few weeks ago we ran a short blog post on Multiple Sclerosis Heat Intolerance or Uthoff’s Phenomenon. While there has been some interest in the subject there were no comments on the blog until yesterday.

A lady kindly commented “Now add pre-menopause hot flashes, which in PREmenopuase means I get hot hours!! This sucks so bad. It only gets harder.”

The comment really hit home. What really is the impact of the menopause and pre-menopause on the symptoms of a chronic medical condition? Not just multiple sclerosis, of course, but also other related chronic pain conditions such as fibromyalgia or rheumatoid arthritis.

Not just that what do women do to help with any exacerbations of their symptoms caused by the onset of menopause? This is the aim of this blog post.

Firstly would it be possible for you to take the poll below so we can assess the percentages of our readers who symptoms are changed (or not) by the meno pause.


Finally it would be great if you could share a bit more in the comments section below. You may wish to consuder the following questions:-

a) What is your main medical condition?
b) What is the impact of the menopause on that medical condition?
c) How did you deal with these new symptoms? How successful were these treatment?
d) What one bit of advice would you give to a women with your medical condition who have just started the menopause?

Many thanks in advance!


Win $50 in a draw for taking part in some Fibromyalgia or Pain research for University of Colorado Denver.


University of Colorado Denver

University of Colorado Denver

The University of Colorado Denver is running some interesting research with people who suffer from various types of chronic pain including fibromyalgia.  Jessica Payne-Murphy, who is running the survey, has written a short post outlining the scope of the study!

Payne-Murphy writes “You are invited to take part in a research study: Acceptance-Based Factors in Chronic Pain: A Comparison Between Fibromyalgia and Low Back Pain Patients in an Internet Support Group Sample (COMIRB No: 13-3263). This study is being led by Jessica Payne-Murphy, M.A. at the University of Colorado Denver.

The study involves answering a series of online questionnaires designed to increase understanding of chronic pain. We are inviting participants (age 18 and older) who have been and are currently managing low back pain or fibromyalgia for at least 3 months to complete an online survey. It is anticipated that this survey will take approximately 30-45 minutes of your time to complete.


If you choose to participate in the study, you will have the opportunity to enter a drawing for one of up to ten $50 Amazon.com or Amazon.eu gift cards.

In addition, we request that you forward/share the survey link to other individuals with chronic low back pain or fibromyalgia who may wish to participate in this study so that they may have the opportunity to assist us in gathering information about chronic pain and online support groups.

Please click on the following link if you are interested in learning more about the research study:

https://redcap.ucdenver.edu/surveys/?s=qtaNLcWATj

If you have any questions or concerns, please contact me at https://www.facebook.com/UCDChronicPainResearchStudy?ref=hl