February 5, 2008
LyricaTM Making a Difference
I have been a Fibromyalgia patient for about a year, after struggling to get my primary doctor to give me a diagnosis. I am also an LPN working full time in Assisted Living, as well as taking care of a disabled 64 yr old husband. I don't have the option of stopping work or even going to part time. I have been on Lyrica for a week now, and I feel that it is helping me already. The shooting sharp pain I had in my legs, feet, and hands is gone. The achiness isn't completely gone, but I can live with it. I feel more rested (I work night shift), have more energy to do things, rather than staying under the warm covers and hibernating when I'm not at work. (I live in Washington State so I don't have sunshine much, but I do find that sunlight is a big help.)
I'm due to increase my Lyrica dose today, and hope that the relief continues. I would like to talk to others who are caregivers and struggling with Fibromyalgia. The support group here doesn't give me much and my husband doesn't understand. Fortunately I have awesome bosses who are interested in our well-being. - Sharfine
Note: Try visiting our message board to find other caregivers with FM. Enter the word “caregiver” (without the quotes) in the search box to find threads dealing with caregiving, or start your own thread asking others to respond.
To get to the message board, click on the “Community” tab at the top of the ImmuneSupport.com Web site. Next, choose “Message Boards” from the purple buttons just below the tabs. Click “Fibromyalgia” on the list. This will take you to the FM & ME/CFS Message Board. If it’s your first time there, you’ll need to sign up (click the “Sign-up/Log in” button on the right side above the “Last Reply” column). Signing up is free and only takes a minute.
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Maybe Now Surgeons Will Listen
Re: the article “Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Anticipating Surgery.” Thank you, Dr. Lapp! These recommendations just confirm some of what I myself have found out but have had problems getting treating doctors to believe. Maybe they will be listening a little bit closer without argument, if I ever have to have surgery again, given the chance to read this article written by another MD. – Liss
Note: As Dr. Lapp offered in his Feb. 1 Live Chat Q&A, featured in this issue, you can also go to his website (http://www.drlapp.net) and request that he send the physician recommendations personally.
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FM and ME/CFS Are Not the Same
Regarding the question in the 01-02-08 issue of the ME/CFS Newsletter about whether or not FM and CFS are "the same": In 2007 a group of researchers found evidence to distinguish between FM and CFS using the genetic profiles. (You can see the abstract for “Identification of Genetic Profiles in Severe Forms of Fibromyalgia and Chronic Fatigue Syndrome” or download another version that lists sources.)
This research was reported at the January 2007 IACFS/ME conference in Florida. I was told by Dr. Ellie Stein, who attended the conference, that these researchers interpreted their findings to mean that FM and ME/CFS are therefore separate medical conditions, based on what one sees malfunctioning on the genetic level…We all have seen or experienced the great number of clinical similarities between FM and ME/CFS, and it will be very interesting to see what these findings mean in light of apparent clinical overlap. – Linda
Note: For more on this subject see also the Live Chat Q&A with Dr. Nancy Klimas, MD, featured in this issue.
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“All in Your Head” & FM Education for MDs
I was diagnosed with FMS in 1999. I was 49 years old at the time, however, I have had numerous symptoms since about 35 years of age. Being a registered nurse myself I thought for years that I had an autoimmune disease that just wasn't being diagnosed… It was embarrassing going to doctors, even after being diagnosed with FMS. I still have felt that the medical profession does not really sympathize with this condition. I believe FMS/ME/CFS are all related. I wish they would also come up with another name for FMS as I still feel that the medical profession and general public look at these conditions as "all in your head"! – Karen
Note: Despite what it may seem like sometimes, Fibromyalgia has actually made great progress in the past few years. In terms of perception, the recent FDA approval of a medication to treat FM has given a huge boost to its credibility – both within the medical profession and with the public. Perhaps best of all, continuing medical education programs are currently being developed to help physicians learn more about Fibromyalgia and how to diagnose and treat their FM patients.
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Inherited vs. Genetic
I think people need to take the word "genetic" with a grain of salt when reading summaries of FM and CFS research literature. Readers appear to be narrowing the meaning of "genetic" to "inherited" - when this is incorrect.
Genetic simply means "with reference to the gene." The genome is a great load of genes in a certain specified inherited format. However, some of its genes can be switched on or off by viruses, chemicals, and other factors after the basic inheritance has taken place. Genes are like programs for producing proteins, and when they get reprogrammed in this way, illnesses can result.
This is all very simplistically put, but I think I have the concept right. I think this concept of reprogrammed genes will prove important in the determination of the cause of CFS, and possibly in treatments.
Is FM or CFS considered inherited based on research to date? In FM it is my understanding that researchers have identified a potentially inheritable aspect or inheritable factors, although this research is still preliminary, while in CFS the hypothesis of inheritable illness has not yet gotten past the point of wishful thinking.
However, what does seem clear from the 2005 biomarker studies is that genes express themselves abnormally in CFS compared to normal expression, but that this has likely been caused by a switching on or off (up- or down-regulation) of otherwise normal genes by chemicals, viruses, etc. This last point is directly from the abstract in Kerr, et al.'s work (U of London, 2005). – Linda
Note: Thank you for making the difference between the terminologies “genetic” and “inherited” clearer, as well as briefly summarizing related research. We would just add that, according to Dr. Daniel Clauw, MD, there is overwhelming evidence that the tendency to develop Fibromyalgia is inherited. In his Q&A on ImmuneSupport.com last October, he stated that people with FM are eight times more likely to have a close relative with Fibromyalgia than are people without Fibromyalgia. The jury is still out on whether the tendency to develop ME/CFS can be inherited.
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This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
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