Having great support from your Doctors is great, but you still need more people on your Fibromyalgia Team.

The next part of your team is your support system. Your family can be the ones on the front lines, they are the ones that you can to depend on the most.  On the days when you just can get out of bed, or you just can not wash the dishes, or take care of your children, your family is going to be to help you take care of yourself and take care of everything else.  This can put a lot of pressure on not just yourself but for your family.  There is no easy way to deal with this, but to know that your family is there because they love you, and if you are willing to try your best each day, they will try their best each day too.

Some people do not have this support system, and for them all I can say is, please do your best to find one.  Your support system can be family, friends, or support groups.  We all need help, and we all need some understanding, if we can find these things, then we can work on what we really need to work on, our health.

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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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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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No matter when or how you got Fibromylagia, you are different, what might work for me, may not work for.  You could say that just make us more special, but it means that Treatment, is going to be a lot harder.

I am very luck to find doctors that are willing to help me, and to communicate with me as a person.  That is something that has been a long road to finally find, from Scotland, US, and even some time here as well.  My team as I call them, are open to my ideas, and my questions. The one thing that I have learned is that as the sick ones, we have to take some responsible for our health and treatment. After seeing so many doctors and some thinking that I am half crazy and the others, just not having the time to really look at what is going on, you better hold on tight with the one doctor that is there and really wants to help you.  Also I think some doctors like a challenge and Fibromylagia is very challenging.

I hope if you are a Fibromylagia patient, that you can find a doctor that can help and support you, like you need.

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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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We’ve fixed some of the problems with the site and hopefully I can post more regularly now. We installed Disqus for comments, which is nice because it has Twitter and Facebook integration. Also, we installed a number of plugins that add different features to the site, so hopefully you’ll enjoy that. Finally, if you check out the site with iPhone or many other mobile devices you should see a version of the site especially made for that format.

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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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The treatment in the US was long but short, on the first day, they took what seemed to be all my blood in my body, but that wasn’t too bad. I then saw the doctor, and he explained what they think was going on, what they would find from the test. After about an hour, I was sent to a room for some IV treatments. I had no problem with the IVs and even thought it seemed like forever for them to finished, I was on my way back to the hotel by 3pm. The worst part of the first day was that I had surgery on my mouth, before leaving Dubai, and I developed something called dry clot. It was pass painful, and thank goodness the center found me a very nice dentist.

On day two it was more of the same with IV treatments and me learning how to give myself a shot (which I totally hate). I was so tried that I sleep for most of the day, that was after Magnus found me earplugs and one of the nurses gave me an eye mask.

The third day in Atlanta was a free day, so we tried to catch up on some shopping and I really over did it. Magnus, could even tell that I over did it, big time, but the time was short. It rained almost everyday we were there, and most people would have been upset about that, but for us, it was really nice to see and feel the rain.

We returned on the fourth day to get my results and to get more IVs. The results told us a lot of things. I have an over growth of yeast (that isn’t something that I am proud of) I have a big problem with my iron levels, and thyroid levels are also low. It seems that my adrenal glands are not working as they should. The doctor believes that this may come down to me having the Epstein Barr Virus about 10 years ago. So, if you add all of this to my level Vit D3 levels, you can probably understand why body is hurting like it is.

One of the hardest things, was trying to get all of my meds and supplements together, to come back. We were in Atlanta for seven days, and it was a busy seven days. I wish I had more time, and also took it a bit easier, while I was there, I believe that would have made things a lot easier.

I cannot tell if all this money and treatment will all work, but it was nice to be in a place, where they did seem to have some kind of idea of what is going on with me and my Fibro.

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