My Fibro Blog

Last night on twitter @nursebc1974 posted a very line about Fibro, “No winning with fibro.. just adapting.” LOL think that is so true, because just when we think we have something figured out, something new comes up. you can follow me on twitter @cnystedt.

I would one day like to figure out how to get off all of the meds and not be in so much pain. This is why next month I am going to the US to get help. I am not sure where this journey will lead me, but I hope for the best and wish for much improvement. The place that I am going is Fibromyalgia & Fatigue Center, and they have some interesting theories on how or why we have Fibro. I had to fill out this 37 pages survey on my problems and they will take a lot of blood samples while I am there. In many ways I wish that I was leaving tomorrow for the treatment, but in other ways I am afraid, what if they can not help me? Then what will I do then??? I do have a lot of hope that they can help me, and I promise to pass along any information that I receive there, that may help you as well.

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.

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.

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.

It seems my doctor, Dr. Badsha, conducted a pilot study on the affects of yoga on rheumatoid arthritis patients. This study found that yoga can have important physical and psychological benefits to rheumatoid arthritis, patients. Read the article at the Eye of Dubai.

A pilot study conducted in the UAE reveals 12 sessions of yoga significantly improved the conditions of rheumatoid arthritis (RA) patients. This study was presented before the 13th Congress of the Asia Pacific League of Associations for Rheumatology in Yokohama, Japan by a team of Specialists in the United Arab Emirates.

“It is possible that yoga may have important physical and psychological benefits for patients with rheumatoid arthritis,” declared Dr. Badsha, specialist rheumatologist, Dubai Bone and Joint Center (DBAJ).

A total of 47 patients were enrolled, of which 26 undertook yoga sessions, while 21 were on regular arthritis treatment. The baseline demographics were similar in both groups. The Raj yoga sessions were conducted by a licensed practitioner with a Master’s qualification in Yoga. Raj yoga is defined as “concerned principally with the cultivation of the mind using meditation to further one’’s acquaintance with reality and finally achieve liberation.”. The yoga was specially modified to suit Arthritis patients by Dr. Vishwas Chhabra and Dr. Badsha, and this new program is being called Vishwas Yoga for Arthritis.

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.

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.

Well today I started a new chapter of my Fibro way of life. Today I met Dominique from the Osteopathic Health Center here in Dubai. He is going to help me deal with the Fibromyalgia, with therapy. First he has given me some exercise to do while I work, in hopes that it will loosen up my neck and back muscles. Then he signed me up for pool exercise class. This is the first time that I have tried this, and I am looking forward to it. He told me it was up to me to let them know when I could not do something, because it was too painful. I think it is easy to forget sometimes that we can not just go all out for something, even though you want to. I learned that the hard way this week.

Sunday, I really started to hurt right after lunch time. It was like my body was in one big knot and someone was pulling it as hard as they could. Well normally I would just take some meds and go to bed, until the worst was over. No, I didn’t do that this time, I had a doctor’s appointment and I felt like I had to go. So, I got myself up and went. I made it there, but I was about to pass out when I arrived. So, I had to call someone to pick me up, because I could not drive. That is a lesson to me (how about try to remember that, for the next time! LOL to listen to my body, and everything will be much better.

Okay back to why I wanted to make this post. Dominique, was really nice and he took good care to not make Fibro worst. He knew I was in pain, and that we have to take things slowly. It is so nice to find someone that seems to understand your pain, and that you do have pain. He did not judge me, and you could tell he was there to help me. So, we will see how things go, but things are looking up. ( I just hope they stay that way

Did you know that we have a month? Well that is Fibromyalgia has a month. LOL I hope that this helps with the awareness of Fibromyalgia, and helps the people out there that still do not know what is wrong with them. So, here is to our month.

This past week, I took a big step in my journey with Fibromyalgia. I went to a new doctor, and asked for help. ☺ My new doctor is Dr. Humeira Badsha, at Dubai Bone and Joint Center. She agreed with my doctor in Abu Dhabi that I do have Fibromyalgia, and that I need treatment. She wanted some test first and then some physiotherapy. Also she changed my medicine to the Fibromyalgia drug Lyrica. She also wanted me to see a specialist for my endometrios. So I will see Dr. Janeta with Infinity Clinic, next week. This is a new road for me, and I do feel good about it. My doctor in Abu Dhabi, Dr. Pierre Sejourne, died (my he rest in peace) and forced me to make a change. He helped me the most he could, and he also listened to me, that is more than anyone had done before. So I am on a new journey, and where this road takes me, I have no clue. I will try to write more, about this new journey, in hopes that it can help some one else.