On May 15th 2010, there will be a meeting in support of Fibromyalgia at Organic Foods and Cafe, located at The Dubai Mall.  This event is hosted by Emirates Arthritis Foundation will take place at 10:30 am and there will be a tour of the gluten foods that the Organic Foods and Cafe offers.  I hope that people that are affected by Fibromyalgia will turn out, and love ones of people will also come to show their support for people with Fibromyalgia.

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Mark your calenders May the 15th is Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.  I encourage anyone that is affected by this, to use your voice to tell your story.  By sharing our stories we can help educate and raise the awareness of this very complex disease.  Better yet, we can use our voices to let others know that they are not alone in this battle and that we there for each other.  Please let me know of any actives that you are planning on doing to spread the word about Fibromyalgia and Chronic Fatigue Syndrome.

You can find out some other actives that are happening in the the US at About.com.

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Last weekend the Emirates Arthritis Foundation held a Stress Management Workshop, and it was a lot of fun.  As people with Fibromyalgia know, stress can be a big trigger for a flare.  This stress can be physical or mental, or a combo of both.  It was really nice to hear people talking about how we can manage some of this stress, and to start listening to our bodies.  I know I can be one of the first ones, to forget to listen to my body and before I know it, I am having a major flare.  So, it was great to listen about going back to basics and start to listen to my body again.

One topic that kept coming up was remembering to breath, and relax.  I know we all breath, because if we didn’t we would not be alive any longer.  The breath that they were talking about was taking that time to listen to your breath and have some really deep breathes.   If we would remember this every time we are in a stressful situation, I bet we would not be as stressed after the event.  So a big thank you to Emirates Arthritis Foundation for the Stress Management Workshop, and reminding me to breath again.

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On March the 12th the Emirates Arthritis Foundation will be hosting the 3rd Annual 5K Walkathon at Dubai Festival City. All the proceeds will go to the Emirates Arthritis Treatment fund.  With your support we can help make a difference in people’s life through education, awareness, and supporting patients in the UAE with their expensive medication (as much as 70,000AED per year/ per patient).

The Foundation needs help in many ways, they need help in getting the word out about the event, they need runners/walkers, they need volunteers to help on the day of the event, and craft people to sell items at the craft fair taking place at Dubai Festival City. If you are a company that can help with t-shirts, water for the runner/walkers, or anything that you can think of that will help make the day special, please do.

Runners/Walkers the foundation needs you to help to get people to sponsor you for the walk. The target for this year is for each runner/walker to collect 5,000AED.  If you can collect donations of 5,000AED or more you will receive a 100AED Mall voucher. Please download the collection sheet and get busy collecting.

Arthritis affects 1 in 5 people worldwide. The average age of Arthritis sufferer is 43 years old.  It is not just about old people but young people including children, suffer can suffer from this debilitating disease.  Not only affecting the joints, but skin, eyes, lungs and hearts.

We lost 2 children to Arthritis last year.  We hope in 2010 we can make a difference through education, awareness and supporting patients in the UAE with their expensive medication (as much as 70,000 AED per year/per patient).

We can only do this though with your support. Therefore we would like to set a target of 5000 AED per participant.  Please ask your friends, families and colleagues to help a fantastic cause.

All sponsorship forms and funds need to be submitted by the 18^th March 2010, for press purposes.

If you would like to know more about the foundation please see our website www.arthritis.ae or call +971 42317470.

Thank you for your support in advance.

Emirates Arthritis Foundation

Please print out the Sponsorship Form and start helping Emirates Arthritis Foundation

GET BEHINDS SPONSOR FORM

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Has the Whittemore Peterson Institute found the answers to Fibromyalgia and/or Chronic Fatigue Syndrome? Well in a small study they say that they found a retrovirus in most people with Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Sclerosis.

We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

I hope, as I know we all do, that they might be able to finally find some of the answers that we are all looking for.

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The time that I have been back from my treatment in the US, has been long and hard time. My lower back has been giving me a hard time, and it wasn’t until the last week or so that it has been better. I even went to the ER because I could not take the pain any longer. My lower back has always been painful, but this time it was different, my legs didn’t really want to work either. I also had a really hard time with the new med they gave me Sevella. This is a new drug that was approve in March for Fibro, and the pain that comes along with Fibro. It was hard for me to connect words together to make sentences, and I could not really think strait. After about three weeks, I stopped taking the Sevella, and I improved a lot in a short time.

I do believe that taking the thyroid med is helping a lot, and I went almost two weeks, with out the real (not able to get out of bed) pain. It has been a really long time, since I have felt this well. Though last Thursday, I had my first really bad day (I should have listen to my body and went home), I am still not ready to complain.

Last Thursday I also had my first follow-up appointment over the phone since leaving Atlanta, and it was nice to find out that I have some more problems, that we need to look at. Most of things the doctor told me over the phone was not a surprise, and he had even told me, that he expected that I had these issues. I should receive his new orders soon, and I can update you on what else I am having to do.

I have been reading a book recommend by the center on yeast, The Yeast Connection Handbook, by William G. Crook. So I am learning all the issues with yeast and the overgrowth, and what that can do to your body. The hardest part is learning to leave out the yeast, sugar, other items that can feed the yeast, more on that later.

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You have been told that you have Fibro, but have you checked your Vitamin D3 levels? Well as I have posted before, my levels were so low that my Dr. ran the test three times the first time we found the level to be between 4 and 9, when a low level is 25. So, to say the least we check my levels every six weeks now, and the only that gets my levels up just a little is a vitamin D3 shot. Here is an article that you may like to read, about why vitamin D is so important.

Vitamin D – 12 Benefits for your health and wellbeing

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Okay time for another update of how things are going. After what seems to be about 20 pints of blood we have found that my Vit D levels are way too low, that I might have celiac disease, my calcium levels are low (no surprise as my Vit D levels are low), and then after a few more tests they found out that my PTH is high and my Free Calcium level is High. So what does all this mean, well I am guessing a couple of different things.

First I have cut out all wheat from my diet, and that has been interesting, more about that later. I am making an appointment with a gastroenterologist about my celiac disease and an endocrinologist about maybe having Parathyroid Disease. That doesn’t help my low D levels, but I am guessing that we will get to that, at some points. Oh my test from the OB/GYN came back all okay, so that is one less thing to worry about.

So, how do I feel about all this, I am not sure. It is nice to try to figure out what is going on, but then sometimes it just means more doctors. I am about tired of the doctors, but I know that they are the only way we will ever figure out what is going on.

My doctor says that studies are showing that people with Fibro have low D levels and are having problems with gluten, and that seems to be the case with me. Let’s see what the other doctors have to say, before we know anything really. Will keep you update.

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About.com:

Lupus and fibromyalgia are two common rheumatic conditions. Do you know the differences between lupus and fibromyalgia? There are specific symptoms, distinguishing characteristics, as well as overlapping symptoms associated with lupus and fibromyalgia which determine the diagnosis and course of treatment.

Systemic lupus erythematosus, also commonly referred to as lupus or SLE, is a chronic, inflammatory, autoimmune disease. Lupus can affect the joints, skin, kidneys, lungs, heart, nervous system and other organs of the body. Lupus symptoms often resemble symptoms associated with other types of arthritis, making lupus difficult to diagnose. Lupus affects 10 times more women than men. Though lupus can develop at any age, disease onset usually occurs between the ages of 18 and 45 years old.

Fibromyalgia is a chronic condition characterized by body aches, widespread pain, sleep problems, extreme fatigue, depression, anxiety, and other symptoms, in combination with tenderness of specific areas (muscles and tender points) on the body. Fibromyalgia is a type of soft tissue or muscular rheumatism and does not cause inflammation, joint damage or deformities.

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Its seems that women hurt their backs or have back pain at different times during their menstrual cycles. It has to do with the hormones levels at different times in their menstrual cycle.

The study suggests the risk of injury is linked to fluctuating hormone levels which affect the muscles and ligaments.

Both tissues appear to be vulnerable midway through the menstrual cycle, while the ligaments are at greater risk at the end.

This is significant for women everywhere who can plan their schedules around their cycles and avoid potentially painful injuries
Rebecca Morrison
British School of Osteopathy

Midway through the cycle, the level of the female sex hormone oestrogen, which gives strength to muscles and ligaments, drops dramatically, resulting in sudden weakness.

At the end of the cycle levels of another hormone, relaxin, rise.

This is to allow the cervix to open so that menstruation can occur, but it also means the ligaments in general are softened.

The researchers found that strains and other injuries were more likely at both these stages.

My question would be, does this have anything to do with women more likely to have Fibromyalgia or CFS? Read more at BBC Health.

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