We will have our second monthly meeting for the Fibromyalgia Support Group Meeting on the 19th of June 2010.  Monthly meetings are scheduled for the third Saturday of each month.  This month’s meeting will take place at Café Blanc, Dubai Festival City, at 10am.  This is a time where we can meet, support each other because we truly understand.

If you can not make it and you would like to ask any questions for the meeting you can post a comment to this thread or follow us on twitter @myfibroblog.  For more information about arthritis in the United Arab Emirates, follow @UAEArthritis on Twitter, Emirates Arthritis Foundation on Facebook, and visit their website Emirates Arthritis Foundation.

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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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Here in the UAE it is hard to find the right meds to help you deal with the different things that Fibromyalgia brings, and the meds you do find here, are most likely not covered by insurance.  Let’s be real, even in most countries it is hard to find the meds you need, because we have no real clue to what Fibromyalgia is.  What the doctors do know is that there are some meds that do help some people.  What are those meds, well they are like Lyrica, Cymbalta, Savella that has been approved as a Fibromyaglia drugs. Lyrica, was first approved as an anti-seizure medication, before it was the first medication approved to treat Fibromyaglia. Most likely this medication is covered here in the UAE under your insurance. Cymbalta, was the next drug approved for Fibromyaglia and it listed as an anti-depression medication and will most likely will not be covered by your insurance.  Savella, has only been approved in the US, and is not available here in the UAE. I must add that all of these drugs are approved in the US as Fibromyaglia medication to help with the pain of Fibromyaglia, and not here as such.

There are other medication used to treat the affects of Fibromyaglia, but are not listed as medication to treat Fibromyaglia.  They may include, Tramadol, amitriptyline, and other anti-depression drugs and pain meds.  It isn’t the case that anti-depression meds, are given for anti-depression, but to help control the pain and sleep with Fibromyaglia. Some patients with Fibro can and/or might get depress, but that is not always the case.

One of the big problems that I see is that everyone with Fibromyaglia is different, what might work for you, may not work for me.  You may have to try different drugs for treatment and also other non-drug treatments, to find your right answer. As I know of, there is no medication to help with sleep here in the UAE.  Most patients with Fibromyaglia have a hard time getting that deep sleep that they need to help their bodies repair themselves.  If we can control our sleep, I think many of my problems would be reduced.  It is so much harder to deal with the pain, when you have not had that good deep sleep.

It you have tried anything that works for you, medication or other treatments?

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I little of a year ago I started to get these big knots in my arms, legs and back, and no one seems to know what they really are.  The knots seem to get bigger and more painful when I am having a flare.  Since non of my doctors seemed to know what is causing this, I went out on internet looking for answers.  I think I may have found an answer, it is called Lipomas and they are non-cancerous tumors that grow in the fatty tissue right under the skin. Adrienne Dellwo, who writes for About.com Guide to Fibromyalgia & CFS, has a great piece article, called Lumps & Bumps: Fibromyalgia & Lipomas about Lipomas.  It seems to be a common problem with people with Fibromyalgia.

There are a lot of lumps and bumps in my arms, and I know people notice them, and it is not much I can do.  Sometimes they become very painful and they also bruise very easy.  So, not only do I have these big knots but they turn black and blue, which makes they stand out that much more.  For me, I have just had to decide that this is just another thing with the Fibromyalgia and that there really isn’t much I can do.  If or when they get larger, I may have to look getting them removed by the way of surgery.

It is really nice to finally know what these things are, and that it is something that goes with Fibromyalgia, instead of something totally different. One thing is that you should also talk with your doctors about any problems you may have, also if you think that you may have an answer to a question that they might know about.  Just because you find something online, that you think might answer your questions, you also need to have an open talk with your doctor, because the answers are not always what we think they are.  You also should have anything new checked out by your doctor, it may have something to do with your Fibromyalgia or it could be something totally different.

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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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I am just going to come right out and say it, Fibromyalgia sucks!

That is right, anything to do with Fibromyalgia or Chronic Fatique Syndrome, is horrible.  You never know what will come next and just when you think you might understand this disease, it changes on you.  You have to learn that you just can not do the things you want to do, and you will never be able to things like you did before.  I have never been one to complain about Fibromyalgia, I have just tried to go with the flow or the bumps that it gives me, but I am tired of doing that.

One of the worst thing about Fibromyalgia is that you are not just fighting the disease, you are fighting for treatment, you are fighting for answers, you are fighting for your life (your daily living), you are fighting to be apart of your family and to take care of your family, you are always in a fight for something.  So, if Fibromyalgia doesn’t make you tired, all the fighting will, that I will promise you.

People with Fibromyalgia are fighters, we have to be, if we want a life.  We go to work, when we should just be in bed, we cook dinner, when we should be in bed, we clean house, when we should be in bed, we put a smile on our face, when we should be in bed, we put that 110% in just to get out of bed, just to get to work, and that does not count the 110% we put in at work, just to make it look like we are fine and there are no problems.

Some people still thinks that our only problem, is that we are depressed and that we just need to get over whatever it is that is making us depressed.  Well if you have Fibromyalgia or Chronic Fatigue Syndrome you know that it is much bigger than just being depressed.  For anyone that has a chronic diseases or chronic pain may benefit from talking to a professional, to begin some of the understanding, healing, and coping skills that we all need.

I think I am at the point where I need to learn some of those coping skills, and to let go some of the guilt, of not being able to do everything and the extra burdens I put on my family. It is never a question for me, I know that I will push for tomorrow and to try to get everything done on my list, but the truth is that most likely I am not even going to come close to finishing my list. That is something that I need to accept and understand that this is the way of life now.  I want to live my life the fullness, now I just have to figure out how to do that with my new/old friend Fibromyalgia.

Have you benefited from professional help in dealing with depression or coping skills and Fibromyalgia?

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Well it has been a while since I last wrote, but it has been an interesting time.  It seems that my iron levels are also affected with Fibromyalgia, and they got really low in November and December.  My iron and Ferritin (a protein that stores and releases iron in the body) levels were so low that I was having a really hard time being able to go through the day with out sleeping, having bad joint pain, and freezing.  When I would get home from work, I would just go strait to bed, and I would sleep until the last minute before having to go back to work.  This was not how life was to be, even with Fibromyalgia.

After talking with my doctors, it was decided that I would take a course of iron IV treatments.  The thing is that even with the iron treatments, I would not see any increase of energy or iron levels for about four weeks.  I have since had three treatments, and I am now just really seeing the benefits of the treatments.  It has been a long road, and I hope with the help of the doctors, we can now watch my iron and ferritin levels, before they get too low again.  This is just on more thing to watch out for, on top of my B12, Vitamin D, and Thyroid levels.

So, this is just latest to the long list of problems with Fibromyalgia, and I am sure there will be more, that we will have to watch out for.  One thing you can count on with Fibromyalgia, is that there is always something new down the road.  My hope is one day they will find some answers to Fibromyalgia, and in turn find us some help.

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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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