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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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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I think anyone with Fibro has been in the same place as Bev, and today I was not too far, from having a day much like Bev. People with Fibro some times the safest place for them is the bed, and to get out of that bed, it takes a lot of get up and go, to make it through the day. You can find Bev’s great blog at Sassynurse Says… and also on twitter @nursebevw .

I woke up at 8am in a panic because I was afraid I over slept and she missed it. Thankfully I had not! I got up and got some coffee hoping it would help my headache that I was awoke to. I drank about half of it and decided I would straighten my hair so I didn’t embarrass my daughter by going with it in the usual fuzzy ponytail I have been sporting lately. Wow, what a struggle that was.. who would have thought that arms could be so heavy! I finish at about 9:15am and go off to find some clothes that will look ok and still be comfortable. Today is apparently going to be one of those days that even a bra is a pain.

Ok.. so, I’m dressed, find shoes.. got the check book, my purse and go to look for my keys upstairs (my bedroom is in the basement). By this time, I’m ready to lay back down. I feel weak, tired and even breathing seems a chore, but I’m almost there.

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It has been a while since I have posted and I am sorry that I have not posted in such a long time. Between work and not sleeping that much, my time for thinking or writing has been short. I love my job (was promoted in January to Managing Director of our company) and it has been a lifesaver and also the thing that may have made my Fibro worst. But with out work, I am not sure where I would be today, because that is what keeps me sine and gets me up each morning. In February I was even in hospital because I needed help with pain management. I think it also had to do with two very long trips to the US in less than three weeks that did not help, but I now have two wonderful Doctors that are trying there best to help me. It seems that I am not that easy, and we are at a lost with what to do next.

One thing I think we have learned is that when my Vit D starts to get low, my pain and problems get much worst. So we are checking my levels every six weeks, and if I need injections, I get them. My muscles feel like they have a death grip on my body, and nothing will loosen them up. For the last month, I have survived by going once or twice a week for massages. The poor therapist has tried so hard to get the muscles to relax, and it is hard work for them, without getting the muscles to relax.

Since my Vit D shot about six weeks ago, the muscles have let go of the death grip (thank goodness) and now it is just regular Fibro pain. I am also very tired that it has been hard to even get out of bed. It is nice to be able to sleep, but I need to work as well . The Vit D check is this week, for the six weeks, and we will see how the levels are then.

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We have returned from a visit to the US to be with family for Thanksgiving. It was a wonderful trip but a very busy trip with not much relaxing. Also it was really cold while we were there (which is not normal for this time of the year) and I had to find some warm clothes. One thing that I had to remember quickly was to dress in layers, because while it was cold outside it was really warm inside. I have a hard time with temperature sensitivity, as I go to one extreme to another. Now I just have to get my body clock be in time with Dubai time, this is why I am writing this post at 3:30am and that I have been up since 1am.

Do any of you have any tips on how to travel with Fibro? I am traveling again in a few weeks, and will try to remember the things that I learn on this past trip. Also I have to say that traveling in Business is much easier than economy. I was able to stretch and sleep better on the plane which helped me greatly. You can find more tips at about.com.

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Hello, I know it has been a while since I have made a post, and I am sorry for that. Can I just say that things have been so busy!!! I am not sure if I am going or coming some days. There are still good and bad days for me, and I am working on having more good days. I have been exercising and that has taken a toll. When I get back from gym I am so tired, and I can sleep for a long time. This is not good when it is first thing in the morning and I have to get to work. I am not sure why I am so tired after the gym, I was never like this before. On another note my muscles seems to like to be stretched, and it makes me feel better. I am thinking yoga would be a good exercise for me and my muscles, if anyone knows of a good place for yoga, I am open for ideas.

I am not sure what people my think about this, but I would like to start a Fibro Community or Support Group here in the UAE. There has to be more people out there that need help and support, it is hard to have Fibromyalgia and not to have the support. I am very fortunate to have the support of my family and friends, but not everyone has this support. So give me your thoughts and we will see what we can do.

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Okay I went to see my not so favorite type of Dr., the GYNO, or better known in my house as the Woman Doctor. LOL But I really liked this doctor. I have been to so many of them, that it is just hard to go to them every year, or more. I had my PAP AND GENITAL SWAB, and this is always the worst. For me it is so painful, and I just want it over. I know most women hate this part as well, but the pain just seems to get worst, each year.

Okay back to way I am writing this post, the idea is that she is going to try to see if there are any hormone problems, that can be making my Fibro worst. We had a long talk and she is going to do a battery of test all during my next cycle to make sure everything is in check. So, all in all it was a good visit, and hopefully she can help me with some answers. Oh and my PAP and Genital Swab all came back okay, so that is one less than to worry about.

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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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