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