Fibromyalgia Relief Center of the Bay Area
First an important Announcement
Starting Tuesday December 6, 2011 A Telephone Support group.
The telephone support group will be a safe, warm and supportive environment for people to talk about their issues with Fibro or anything for that matter. You’ll be able to meet people, make new friends and be with non-judgmental people. The tone will be uplifting, affirmative and positive. The idea is to learn, to find some joy and to leave feeling good about yourselves. I (Dr. Martin) will also speak on a topic (can be your suggestions and or my choice) and there will be plenty of time for questions and answers. The nice part is that after the teleconference, an audio copy will be e-mailed to you within 24 hours. The hours will be:
Every Tuesday: 6 PM Pacific
7 PM Mountain
8 PM Central
9 PM Eastern
Send an e-mail to firstname.lastname@example.org and I’ll fill you in on the rest of the details. Remember that with cell phones or Skype, even long distance calls are pennies these days. Take a positive step
More Fibro questions and Answers!
8 Why are Doctors so hesitant to treat people with fibro and why do they say it’s all in your head. If you have Fibromyalgia, you understand how debilitating it can be, not just the pain, but the other symptoms including the “fog”. Doing a full Fibro history is and should be very time consuming and many doctors just do not have that much time, especially in our culture of managed care. Other doctors and professionals get frustrated by their lack of knowing how to treat this illness. Still others don’t have the patience necessary to treat a Fibro patient as it takes a lot of skill and empathy. It’s easier for many docs to just toss a prescription at the patient. This is not to say that Doctors are bad, they are just very over worked and feel very vulnerable due to their lack of Fibro knowledge. Lastly, I’m in no way condoning this, it’s just the reality of a very broken medical system.
9 Why isn’t there more research being done to find a cure for Fibromyalgia? Very simply, fibro is not a “glamorous illness”, there is no Nobel Prize waiting for the scientist who finds a cure. Most scientists need to rely on grants from institutions to further their research, run their labs and research is very very expensive. Pharmaceutical companies will fund research if there is a huge profit potential in the future, otherwise they won’t spend the money. Another reason is that Fibromyalgia is such an unknown illness among most people. the average person hasn’t a clue as to what fibro really is about or worse, they believe that its some sort of pain problem. It is also very difficult if not impossible to really explain to another how you are feeling with fibro. The old saying is true, “Unless you are in a fibro body, You’ll never understand it”. Lastly, you’ll never see: “Rums in the Par for Fibro” etc until people with fibro start making a fuss and yelling, the irony being that most with fibro are to sick to do this, so perhaps it is up to their loved ones.
10 Are Fibromyalgia and Chronic Fatigue Syndrome the Same or different Illnesses? The jury is out on this question, my personal belief is that they are the same as the symptoms seem to be identical. As I run and own the Fibromyalgia Relief Center of the Bay Area in northern California, I’ve seen people with Fibro and people with CFS respond in an identical manner to treatment and get better. One issue that I’ve seen again and again is that the Fibromyalgia Associations and the Chronic Fatigue Syndrome Associations are both vying for money from the same institutions and thus it seems difficult for the two to work together. There are also people whose lives are devoted to running web pages and Facebook pages on these two illnesses and they are very protective of their own turfs. They are not scientists but feel that if the two were really one illness, they lose a lot of their reason for waking up in the morning. I know that this sounds harsh, but it is true as I’ve encountered this on a number of occasions. I’ve seen people argue this to where you’d think they would physically start fighting. Crazy..Huh?
11 What is the story with the XMRV virus? Does it Cause Fibro or CFS?
What I find truly interesting is that the research has been out for a while proving that there is no connection between this virus and Fibromyalgia and Chronic Fatigue Syndrome. The definitive large scale study was published in “Science” a very prestigious Journal last September 2011, again offering indisputable evidence that XMRV does not cause these illnesses. Yet, people keep insisting on the connection between the Virus and the illnesses. This, most probably due to the fact that they haven’t read the research and only go by what is in the popular press or on a web page. This is dangerous as the popular press is no longer the way to find the current news. With so many sources of information bombarding us on a daily basis (it is estimated in the thousands, without our even being aware of it), we know longer have the luxury of a Walter Cronkite reporting the real news. Any person with a computer can post whatever they like and have it look professional enough to be very believable. News has also really become opinions further agendas such as the liberal television stations, the conservative television stations and everything in-between. In summary, there is no link between Fibro and or Chronic Fatigue Syndrome and the XMRV virus. This is indisputable fact.
12 Is Fibromyalgia Terminal? Absolutely and positively not! I realize that for some of you, suicide has been considered as Fibromyalgia has a large suicide rate (after all the pain alone can be so unbearable), however Fibromyalgia will not kill you. It tends to run in an up and down way, meaning sometimes you feel better, sometimes you feel worse. You might be at one level of symptoms for days, weeks,months even years and all of a sudden, you crash and become worse. All in all the progression of the illness is downward, with ups and downs along the way. I have never seen a patient recover from Fibro by themselves, though that doesn’t mean it might not happen. One thing is true, meds, will not cure Fibromyalgia, they might make you feel a bit better, but will not cure you.
13 My doctor told me that children cannot get Fibromyalgia, is this true? This is absolutely wrong, anybody,male or female at any age can get Fibromyalgia. I’ve seen children, seniors and everybody in between develop
fibro. I’ll always ask a new patient if they had leg pain as a child which was diagnosed as “growing pains” and at least 50% of the time, the answer was yes. This was most probably the onset of the Fibro. I also watched a women who was 68 years old and had fibro since she was three years old recover in my office. she had Fibro for 65 years! If you child is complaining of leg pains, don’t accept growing pains as an answer! I cannot stress this strongly enough!
Next Week: More questions and answers. Please remember to look into the telephone support group that will be starting in December.