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From Our Readers – Comments & Suggestions 11-04-09

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Prunes (Dried Plums) for Bones & Joints

I'm finding that there has been some research going on re: prunes and bone/joint health. There is a discussion about this research on The National Osteoporosis Foundation site. [See, for example: “Dried plums improve indices of bone formation in postmenopausal women”]

Prunes are (high in boron & potassium) and low on the glycemic chart so people with diabetes and those wanting to eat less sugary stuff shouldn't have problems.

The research is saying to take from 3 to 10 prunes per day. I'm getting back on some prunes. I try just about all I can for my joint issues. I cook my dried prunes so they are nice and soft and store them in the refrigerator. I try to buy organic. – J


Will XMRV Research Include Fibro Patients? We’re Desperate as Well!

• Co-cure listed a call from University College London’s Infection & Immunity Division for applicants to conduct a study of – “A role for XMRV in human disease.” I think we should e-mail them to urge they include FM patients in the study. – P

• Write-ups on the new research on CFS/ME do – however briefly – include Fibromyalgia and several other diseases as potential outcomes of being infected with the retrovirus XMRV. (More data show greater than 95% of the more than 200 ME/CFS, Fibromyalgia, and "Atypical MS" patients tested positive for XMRV antibodies, as per their websitewww.wpinstitute.org.) The information in this quote from Dr. Bell's article is available in the research he is citing. However, this news, and apparently the upcoming research, seems to be focused only on CFS/ME.

For God's sake people! Those of us living with FM are getting quite desperate as well. This could be very good news – unless we are left out of the research and therefore the treatments that may result. I don't think I could bear that. It is too hard to live with an illness that is considered speculative – as in science fiction and fantasy – and then to also be left out of the discussion when there is at long last a possibility of real progress in identifying both cause and possible treatment. It is too hard to add that onto years of being treated like a malingerer by the most important people in one's life while trying to manage an essentially unmanageable disease. We are the other side of the CFS/FM coin. Please don't leave us out! – M


Help for Caregivers Who Work

Hi, I'm a working mom taking care of my aging mother. She is beginning to show signs of needing some care. She needs to be checked up on every day and reminded of her medicines and appointments. I found this great service at www.Carecheckers.com. They call her every day and check up on her and then e-mail me the results of the call. It takes a lot of the stress off of me worrying about her every day. I highly recommend it. – M


Source of Resources & Suggestions for Disabled

Although the name doesn't seem like it, a very helpful resource is the Independent Living Centers (ILC)… They do help disabled people. The best part is that many compile a brochure of very useful numbers, which include any disability law centers in the area, any advocates which would help you for free, and much more.

You can go to the safe site www.ilusa.com/links/03-08centers1.htm and find your state, then find the ILC closest to you. It might be an idea to give them a call and ask if they have any brochures for the disabled with info and phone numbers that might be useful.

Also, when I had problems with the place where I live accepting service animals, it was the ILC that suggested the Disability Law Center who over the phone helped me write the reasonable request letter. When management here wouldn't accept that, then the ILC told me about contacting HUD and gave me the number and HUD did settle it in my favor. – T


Medicaid Income Limit May be Increasing

At the local disabled group meeting, we had a person briefly speak to us about health plans and Medicare…

• He said that the financial limits to be on Medicaid may be increasing (thus would allow more people onto Medicaid). So watch to see if that occurs for some time in 2010, and if you were near the borderline, you may well be able to get Medicaid if they do go ahead and increase the limit.

• When you get the Medicare & You 2010 book, to go through it and read it. It will contain the new costs of Medicare that you will have to pay plus more information.

• He mentioned it appears there may be an increase in the Medicare fee we may have to pay every month for 2010, even though Social Security Disability will not receive the COLA increase. Again, the Medicare & You 2010 book will indicate that, and so will the Social Security statement (or whatever they call it) that they send us. – T


Fluoride Toxicity Part of the FM Riddle?

Here's an article I came across. I don't know if it is part of the answer to the riddle of FM, but is definitely food for thought: www.earthclinic.com/CURES/fibromyalgia.html#cause. If fluoride toxicity is involved in FM, there are things that can be done, including supplementing with the proper form of iodine, which is another subject. – M


For the Fibro Men

Thought this might be interesting for some of the guys on here – www.fibroguys.com. I just ran across it. – R


Read About Allodynia – That’s Me

I read about allodynia a while ago but never realized how true it is for a lot of the pain that we suffer with fibromyalgia. Please check this condition out and you will understand how it causes so many of our problems with fibro! It describes a lot of my symptoms to a tee! [Note: Allodynia (“other pain”) is a pain due to a stimulus that doesn’t normally cause pain affecting sensory receptors in the skin. It can be associated with tactile sensation – such as brushing or light touch. And it can be temperature related – resulting from normally mild differences in temperature.]

I did not know that my problem with temperature control – very hot /cold was connected. I can wear shorts and t-shirt one minute, then fleecy PJs the next! Any burning/tingling/shooting/electric pain is too. We all know what these symptoms feel like! When I am touched by people/clothing/massage or in any way I am in so much pain. I need to sleep alone and cannot bear my clothes… A massage the other week had me back in bed! I read a post from a woman with fibro who said she feels like a voodoo doll! -R


ME Association’s Ramsay Research Fund & XMRV Research

The ME Association has issued an expanded and informative statement on retrovirus XMRV, including a summary of the epidemiology and lab work that now must be done to answer key questions, particularly regarding its association with ME/CFS, fibromyalgia, and cancer. In particular, they state “Funding from the Ramsay Research Fund could be made available very quickly if we receive a good quality research proposal arising out of the study published by the Whittemore-Peterson Institute on Thursday, 8 October 2009.”

Let’s tell the MEA not to leave FM patients out of the new research! – L


Help for How to Deal with Intimacy & FM Pain?

Q: Any suggestions on how to deal with intimacy when you have fibro? I'd like to be intimate with my husband again, but I am in so much pain I am scared. – K

A: See the article in this issue by Bruce Campbell – “Intimacy – What to Do When ME/CFS or FM Becomes a Third Wheel in Your Relationship.” It includes links to many other articles by Dr. Campbell on the subject of “Recasting Relationships & Building Support.”


Budget Gift Idea for a Friend Who Needs a Treat

www.Restaurant.com has $25 gift certificates for $10 (or $10 for $4, $50 for $20 etc.). Enter any zip code & radius to find restaurants in your/your friend’s neighborhood, and order online if you see one you like. If you’re not familiar with the restaurant, you can look at the menu, etc. They send you a confirmation with links, and you can print up your gift certificate(s). This will be a special treat for one of my friends who needs one. – S

Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition, 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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