In-depth Research Information for Fibromyalgia Survivors

Hello Peers,

I felt that this informative piece should be posted for a overview of everything associated with our pain syndrome. It addresses all the nuts and bolts.

http://umm.edu/health/medical/reports/articles/fibromyalgia

XX

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Lyrica and Lawsuits; Off-label uses, fines, and Research Empirically Showing the Drug Inhibits New Brain Cell Growth

Dear Peers

Please research this! I received a informative article in my FB account and wouldn’t you know it, my phone is acting up and won’t copy any of the valid research sites I have gone ti in order to verify the tale. Type in the keywords above and get ready. I have been personally speaking out against this and other “black label” medicines since I began my blog.

Did you know in 1994 the Pitfizer company used this for migraines and bi- polar issues? Did you know they had the largest ever fine levied against them for their black market label usage?

I encourage you to do your homework and make an informed decision about your health tools. Whatever you decide, at least you will be aware.

Selecting Supplements: LabDoor

Good day Peers

I read this post in a blog I follow and, since so many of us also use supplements to increase our well being, I felt her information was important to pass on here. Please take note of her comment about ” levels of arsenic” in one commonly used supplement! If we are already chronically living with any medical issue, we don’t need to compromise our health with items we believe are assisting us to live better; do your own homework as well as trying out the site she found to assist us. Personal responsibility is key to finding our path to our best life.

Do you take vitamins, minerals and/or other types of supplements? I take what seems to be a ridiculous amount of supplements. Some are recommended by my doctor, and others make sense for energy, good sleep, immune system and thyroid support, better digestion, etc. I make my purchasing decisions based on convenience (# of pills & size), brand familiarity, cost and customer reviews. This has always felt wrong to me, but I had no other way to decide which was the best one to pick.

vitamins-521368_1280

Recently, I went on the hunt to find a better magnesium supplement. I have been taking a NOW brand, Magnesium Citrate 400 mg a day for a while, but it requires me to swallow two, gigantic pills at night. They are so big, that they actually hurt my throat.

Magnesium is a complicated subject. There are many forms available, some are more absorbable than others, some…

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When You Were First Diagnosed with Chronic Pain, What did you Need to Know to Help you Feel More in Control?

I am working on my chronic pain “Positive Tools Pathways” business. I really want my Peers input during this process. I already have 10 worksheets and handouts to assist us in discovering our individual paths to positive pain; understanding triggers and the tools that we need in our lives to achieve this.  Any input will be seriously considered 💜

Please put in comments or use my old email @, msclvwalker@ gmail.com. Please Note; I entered a incorrect email address when I first wrote this. Yikes! Please try again and accept my apologies

XX Lucinda

Creating the “Me Space”, It’s Not as “Easy as Pie”. More Wellness

Source: Creating the “Me Space”, It’s Not as “Easy as Pie”. More Wellness

Link to womenshealth.gov on Fibromyalgia Facts

Fibromyalgia Facts from Womenshealth.gov Publication

Good Evening Peers!

Sorry this post is going up so late tonight. I had a late afternoon appointment for my ongoing health issues in my right knee. The latest is bad pain due to my misaligned patella, diagnosed as Chrondromalacia Patella Syndrome, then a quick grocery run and medication pick up; busy, busy. On the bright side, I am working with a government contracting agency to find placement in my field! This recruiting kept me tied up this morning. I will get back to mid-morning posts soon, please keep visiting my blog, I haven’t given up on my livelong passion for advocating and education for living Well with chronic pain.

I am putting up another link to a reputable government site with basic facts on multiple subjects for those needing answers about their new diagnosis of “F”ibromyalgia. I am one of those people who firmly believe that I can never have enough resources at my fingertips. I acquired this syndrome almost two decades ago. It was only just beginning to be accepted by a few rheumatologists real syndrome. In order to discover what this syndrome really was and how to live Well with it, research was my only option.

Today, there is an overload of information to choose from. Personally, I prefer there to be too much out there than barely a drop. I think a cautionary word about all this information is needed here. When you do your research please be sure that it is a reputable website, forum or book. Take the time to read the research citations, who wrote this article? Is the site a basic MD site or is it a government site, a site that has been doing fibromyalgia research and advocacy for years, a book written by a, or many, doctors, by Peers or someone who discovered “the” cure and is making a lot of money by selling it to you.

There are some things to take under consideration in all these cures. One item I can think of is eating healthy. This is something we should be doing no matter what we do, or do not have. Another is taking certain vitamin supplements, again we should do this no matter what our situation is if we feel, or know, that we don’t get enough of a certain needed nutritional supplement. Of course, exercise is as common as seeing shopping malls every half a mile in big cities, while we don’t need the malls, we do need to exercise. Exercise with chronic pain is not the same as hitting the gym, so do your research first.

When we are newly diagnosed it is both a relief and totally overwhelming. Emotions are on high alert, anger, grief, disbelief, disagreement and trying to discover what kind of help you need only adds to feelings of suddenly having your life turned sideways, leaving you feeling powerless in living your new life. I am going to suggest that you start with a good forum (healingwell.com is one), post questions and get feedback from Peers who have been there, and, are there. It is essential that you also research your symptoms and begin to understand this chronic pain syndrome, but, you have a lifetime, so go slow. If you have a spouse who will compassionately assist you, by all means enlist their help. You can also use your support network of family and friends. Just remember my previous posts of well-meaning persons in your life getting overly involved. Be very clear about what information you need “right now”.

One last thought of the evening, please (this is based on experience) don’t buy one of those books “for dummies” on the subject. It is overarching and repetitive even for a newly diagnosed Peer. Just my personal advice.

Here’s hoping you all have a restful sleep,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor

Newly Diagnosed with Fibromyalgia, What now?

Link to Book That Helped me When First Diagnosed w Fibro

Find on Amazon, I used this Book with great results; complex, take it slow 🙂

Being diagnosed with any life changing syndrome or illness changes everything. Most people can’t instantly accept this loss, or make any changes in their lives until they absorb this new situation. No one would ask for this, it’s just as shocking to our emotions as a divorce or death of a loved one is. The five stages of grief generally comes up during the first months or years; denial, anger, bargaining, grief and acceptance (Kubler-Ross). I know this model well. I was diagnosed 17 years ago, it took me a year or so before I began to search for answers about how to live my new life.

I don’t expect you to be any different, but I do hope that after coming to terms with your pain you discover how to seize hold of the concept of wellness, beginning with taking back your own life by using “personal responsibility” (Copeland, Mary Ellen). I will discuss this further in future blogs, lets just keep the happy thought that there are ways, like the one mentioned above and others, which can enable you to work towards a new joy in your new life!

In the beginning, give yourself a break or three. Draw boundaries with family and friends (they truly don’t understand what is happening to your body or, your mental stress load) by taking the time to draft a loving but firm letter of what you can and can not do at this time (type in the “search” box for letter you can use). After it’s written reread it at least once, edit, hang on to it and dispense as needed. Remember to tell them how much you appreciate their support. Don’t forget to inform them right away when you are having an extra bad day. Tell them that you sincerely don’t mean to lash out, but you are not doing well today. When they feel hurt by your roller coaster emotions, remind them that it’s a bad day for you and that you are doing your best.

Please search out support groups! Brick and mortar or online groups are vital to understanding your pain and feeling that support from peers who have walked in your shoes is irreplaceable. This blog is just one of many places you will find on the internet; when I was diagnosed, I found exactly three! The amount of information available on the internet today is staggering, but, that is much better than very little. A word of caution; be discriminating. You know what types of treatments have worked well for you in the past, however, they may not work now. Trust your own feelings first; your body will let you know if the prescribed treatment or alternative treatment is working, for you.  Don’t instantly get caught up in the maze of options out there. Take your time. Don’t hesitate to advocate for yourself when the treatment is just not working for your life.

Another important thought about the beginning of your journey is this; your friends and family, who have loving and good intentions, will find many solutions for your chronic pain. Politely thank them and if it doesn’t seem right for you, ignore it. Hopefully this will be the end of the discussion. If not, and you value the relationship, try taking them to coffee or tea and explaining that you appreciate their research but you are already trying  “blank”.

Remember, you can always use the letter you wrote if all else fails. Remember, there is no one right way to have chronic pain; actually, chronic pain is vastly different from person to person with common threads. I hope you find a place here, and elsewhere, that helps you to become the best person you can in your new journey in life. In the meantime, run a Epsom salt bath, watch the birds, read a good book, meditate, journal, take a nap every day. Be good to you!
Lucinda, MSW:MH, ILS, Fibromyalgia Peer Advocate/Life Skills Coach