fibromyalgia

Leave a comment Posted on February 20, 2014February 4, 2017 Fibromyalgia, Natural medicine

Fibromyalgia. What natural, complementary or alternative treatments have you used for fibromyalgia?

Fibromyalgia Treatments

As regular followers of this blog will know we take a great interest in the area of natural, complementary or alternative treatments for particular medical conditions.

In this blog we would like to focus on the area of fibromyalgia and natural treatments for fibro. We have covered an overview of the possible treatment in the past so you might like to check out our previous blog on the subject here https://patienttalk.org/natural-treatments-for-arthritis/.

Today we want to find out a bit more about the natural treatments you, our readers, use to help with your FMS.

So we have decided to run a short poll to find out what treatments you have use. You can find the poll below but it would also be great if you could tell us more in the comments box below. In particular we are interested in more detail about the fibro treatments and how they worked out for you.

Many thanks in advance!

1 Comment Posted on February 13, 2014September 13, 2016 autoimmune conditions

Autoimmune conditions! How many auto-immune conditions have you been diagnosed with?

Autoimmune disease awareness

Having worked in healthcare for nearly ten years (first as a research now as a blogger) I have always been interested in what we can call the diagnostic profile of people with autoimmune conditions.

To get an overall introduction to autoimmune conditions please check out this article – https://patienttalk.org/autoimmunity-what-actually-is-an-autoimmune-medical-condition/.

One of the areas that interested me was that there does seem a strong pattern of people who have one autoimmune condition such as fibromyalgia developing another like lupus or rheumatoid arthritis.

I think it is worth quantifying this further so I am running a short poll to find out how many different autoimmune conditions each of our readers have been diagnosed with.

It would be great if you could use the comments box to share which autoimmune condition these are! Many thanks in advance.

2 Comments Posted on February 7, 2014March 27, 2017 Pain Management, Patient Talk

Breakthrough Pain – Do you get pain spikes or flares? Join us at this blog post to share your experience.

Breakthrough Pain

A few weeks ago we ran a short poll to find out more about the types of pain suffered by our readers. You can check out the poll and its results here https://patienttalk.org/?p=2506.

I have to say the results were a great surprise. It turned out that over 12% of our readers suffer from breakthrough pain. Now this was interesting because my preliminary research suggested that breakthrough pain is associated with conditions like cancer. But these results suggest that it is far more widespread.

So what actually is breakthrough pain or, as it is sometimes called, a pain flare?

It has been best described as spikes of pain which cannot be controlled by normal pain management techniques. In fact these can happen a number of times each day or on a less frequent basis.

Current thinking as to why breakthrough pain occurs is interesting. One explanation looks at a concept of conditioned pain response. There is an excellent article by Christina Lasich on the subject here http://www.healthcentral.com/chronic-pain/c/23153/117921/salivating. The way I see it Dr Lasich takes the view that in some cases breakthrough pain is a condition response to the use of medication. By that she means that people who take regular pain medication (say four times a day) will, slightly prior, to the appointed time for the medicine, start feeling heightened levels of pain. She compared this to Pavlov’s dogs experiment – of which more here http://www.simplypsychology.org/pavlov.html. The article is by McLeod, S. A. (2007) and called Pavlov’s Dog.

Dr Lasich also points to opioid-induced hyperalgesia as another potential cause. This is a scenario where people who use many medications become over-sensitive to things which would not have caused pain in the past. While affecting people who take these products it should not be confused with the increased tolerance that such medications may cause. To find out more please have a look at this page http://en.wikipedia.org/wiki/Opioid-induced_hyperalgesia.

Obviously we must also bear in mind that these pain spikes are part and parcel of various medical conditions such as cancer and fibromyalgia.

Going back to the figure of 12% of people with pain who suffer from pain flares, I spoke about this yesterday to a physician. She was firmly of the view that this is, in fact, a very realistic figure. So I thought it would be of value and interest to get the views and experiences of our readers as regards to breakthrough pain. It would be great if you could share your experiences using the comment boxes below.

You may wish to consider some of the following questions:-

1) What is the background condition that causes your pain?

2) What treatments for that pain do you use?

3) Can you describe a typical pain flare for our readers?

4) What triggers these pain spikes?

5) How do you deal with/ treat breakthrough pain?

Please consider these questions just as a guide. Anything you might like to share will be of great interest to our readers.

Many thanks in advance.

1 Comment Posted on January 30, 2014January 30, 2014 Arthritis, Patient Talk

Did you know that there are more than one type of arthritis? Which type of arthritis do you have? Please take our poll.

Arthritis

Before I got involved in medical market research I was under the impression that there was arthritis and there was rheumatism. And that they were pretty much the same thing.

It was just a few days into that job when I discovered how wrong I was. Indeed I’d never even heard to Fibromyalgia or Lupus in those days. Which is pretty poor form given my grandmother suffered from Rheumatoid arthritis for almost all her life.

So I thought it would be useful to find out more about the types of arthritis that our reader have been diagnosed with. With this in mind I have set up a new poll. If you do have an arthritic condition it would be great if you could take part.

This will also help us to make sure future blog posts on arthritis are relevant to our readers

Thanks very much in advance

1 Comment Posted on January 27, 2014February 28, 2014 Patient Talk

HealClick – find out about this new social media website for patients to discuss healthcare – a guest post by Rachael Korinek

HealClick

Welcome to our latest guest post on healthcare and social media

Today Rachael Korinek introduces us to to HealClick and new social media website for patients to discuss healthcare issues.

Korinek shares “HealClick is a brand new and completely free website created for patients and by patients. This unique hybrid of social network and medical forum matches people based on shared details like diagnoses, symptoms, and treatment responses. This makes it much for patients to share and compare treatment experiences. The data that you and other patients provide will be made completely anonymous so it can fuel new research for autoimmune and neuroimmune conditions like Fibromyalgia, Rheumatoid Arthritis, Lupus, Lyme Disease, ME/CFS, and so many others.

Help us grow at www.indiegogo.com/projects/revolutionizing-patient-sharing

This project was created by a team of patients in 2013. The co-founders are both chronically ill with multiple neuroimmune and autoimmune conditions. This unique perspective has allowed them to create a site that truly caters to the needs of patients.

Forums are extremely helpful when researching treatments and for connecting with other patients. But, what about when you can’t find anyone your age? Or when it seems like no one shares your set of co-conditions and symptoms? What about when you don’t respond normally to standard treatments? Come on over to HealClick.

Our unique matching feature allows you to focus on what’s important; your health. The site factors in your diagnoses, symptoms, treatments tried, and treatment responses and then tells you how similar you are to every other member. No more guessing whether you and another member share medical details in common, just check the match percentage under their profile picture.

Sometimes networking with people with different conditions can be just as beneficial as talking to someone with the same illness. We currently have patients representing over 20 different neuroimmune, autoimmune, and related conditions. Since we have so many conditions represented on our site you can also see how patients with other diagnoses are managing similar symptoms. There are many symptoms like fatigue that are common with multiple conditions and we believe that patients can learn from these other patients even though they might not share a diagnosis.

By combining information from your medical matches and ideas from patients with other conditions we believe that you will be better able to take charge of your health care. Come sign up, make meaningful connections for social support, share your treatment reviews, and compare your results with the results of other patients. Who knows, you might even end up with some new ideas to bring up at your next appointment with your Doctor!

Whenever people share their experiences and network with other patients online they generate huge amounts of data. Previously, the majority of this valuable health data has gone unused. What if instead, all of this data could be used by medical researchers to help diagnose, treat, or even cure us? That’s HealClick’s goal. But don’t worry, we take pride in protecting patient privacy every step of the way. The data that you share on the site will never be made public and will be completely stripped of all identifiers before being shared with researchers. Check out the link for more information about HIPAA-compliant data security.

We are so excited to share this technology with you. We also want you to know that we pride ourselves on being there for patients. I don’t have to tell you that having quality social support is important. Chronic illness can be incredibly isolating and hard for other people to relate to or understand. The founders as well as the entire HealClick team all patients. We understand what you’re going through on a personal level and we strive to make HealClick a place where you can find support on bad days and celebration on your good days.

Come join us at www.healclick.com. We can’t wait to meet you!

Still have questions? Check out our blog for answers to 5 frequently asked questions: http://blog.healclick.com/uncategorized/we-got-answers