My Fibro Blog

My personal journey with fibromyalgia

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My next steps in fighting Fibromyalgia here in Sweden

July 11th, 2013 · Doctors/Centers, Fibromyalgia, Fibromyalgia in Sweden, Treatment

Sorry again it has been a while since I have posted again, but things have been moving slowly. So what are the updates, after trying so hard with the new doctor to try to get my fibromyalgia back under some kind of control. She finally said that she could not help me and that I needed to change doctors, so I have change.

A few weeks again I met with the new doctor and I asked for help, that my pain levels have been out of this world, my sleep has been so bad that my husband has had to move to the guest room. After a while she agreed that I needed help and that she wanted to get a team of doctors to see how they can help me. This includes,cognitivebehavior therapist, physiotherapist,occupationphysiotherapist, pain doctor, and my family doctor. So now I am seeing each one so that they can see and hear what I am doing to try to manage the fibromyalgia and to understand what I need help with.

I almost feel overwhelmed with all the different people and keeping everything strait. The hardest part is going over and over my history with Fibromyalgia, and having to ask for help which is so hard for me. So while I am excited to getting some help, I am also scared to get my hopes up too much, but let’s stay on thepositive. The best part of all this, is that I feel like I am doing something to make a difference in my health and in my fight with fibromyalgia.

Once I see everyone then they will have a meeting with me and try to come up with a plan. It might be that they can not help me at their office, but then they will send me the place where they can help me (that is what they have promised).

So as I go through latest journey I will try my best to you posted how things are going.

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Fibromyalgia in Sweden and the very long road

October 10th, 2012 · Doctors/Centers, Fibromyalgia in Sweden, Treatment

So it has been a long time since I have posted here, there are many reasons but I have a new reason to post now that I am living in Sweden. This means that I need to learn a new medical system, and it doesn’t seem to be any easier here as it was in Dubai. The last few years in Dubai I would work crazy hours during the week and then go and crash on the weekend. We would buy whatever food we needed on Thursday (the weekends in Dubai is Friday and Saturday) on the way home and then it was stay home until Sunday morning. I had great doctors that did all they could do for me in Dubai but with limited medicines it was aテつ challenge, or so I thought. Now to be fair I had private healthcare in Dubai and here in Sweden they have a great public healthcare, I am not sure if it makes a difference but I want to be fair.

For some reason I have had it in my head that things would be easier and that I could work with my doctor to find a better way of dealing and handling my care, to be able to have less flares and to live a fuller life, than I lived in Dubai. My focus has been totally on this since we moved here, but in many ways I feel like I am in this fight alone (this isn’t including my wonderful Husband that has been my rock) with little help from my doctor. I am on more medicines here than I was in Dubai, but they don’t seem to be helping, and I have already spent one night inテつ hospital to try to get a handle on out of control pain.

Now since I have done nothing butテつ complained let me tell you some great pluses with being here with fibromyalgia. Here you can see anyテつ physiotherapist with a little co-pay and I have found a great one that has been working with me to see if we could manage the pain while exercising to manage my weight and as exercising seems to be one of the great ways to manage the pain of fibromyalgia. She has been great in helping me to try to balance this very hard thing of pushing myself enough to make a difference but not cause my fibromyalgia to go in a tail spin. I feel for her many times because as a fibroテつ patienceテつ I am in no way an easy client, but she has been here to hold my hand, to listen, and to give ideas on what to do next.

It is funny in the sense that the exercises are easy in that I can do the exercises but what I have to keep in mind that I will probably be in a lot of pain for the remander of the day and probably the next day, it is about one day in between my visits that I might feel ok to pretty good. Some workouts I feel very strong and I feel that I can do just about anything that she might throws at me, but the next visit I might feel like I am theテつ weakestテつ person on the face of this earth, so she nor do I know which one will show up for that visit.テつ テつ So I give her very high marks for being able to adjusting to whatever person that might show up for that visit, just as I have to be able to adjust for each visit.

So what have I learned since being here? Well it is really pretty simple, no matter where ever you are in the world you have to take control in your fibromyalgia care. You have to stand strong and know that this long road with fibromyalgia isn’t going to be an easy road, and if you do not stand strong in your care, then you can not expect anyone else to take that stand for you. If you can notテつ communicateテつ with your doctor then you just have to keep looking for that doctor that can work with you to manage your fibromyalgia. There are some great programs to help you do this in Sweden, you just have to find them and then work with them to manage this long road. So, with this said please follow along with me as I figure out this road here in Sweden, and if you have any questions or comments I hope you will share them with me. I send you a big thank you for reading this far, and I look forward to taking this journey with you.

 

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Fibromyalgia Support Group Meeting 19th June 2010

June 16th, 2010 · Emirates Arthritis Foundation, Fibromyalgia, Support Group, UAE Fibro Community

We will have our second monthly meeting for the Fibromyalgia Support Group Meeting on the 19th of June 2010. テつ Monthly meetings are scheduled for the third Saturday of each month. テつ This month’s meeting will take place at Cafテδゥ Blanc, Dubai Festival City, at 10am. テつ 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. テつ 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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Cooking with the Kenwood Cooking Chef

May 14th, 2010 · Family, Healthy Eating, News

The other day I went to a Kenwood Cooking Chef launch, and I can say that it got me excited about cooking again. テつ About a year ago I started to read some really nice review of the Cooking Chef on different Fibromyalgia blogs.

What is so nice about this machine is that it combines about four machines into one. テつ You can chop your food, mix your bread or cake, it comes with blender, and it cooks your food, yes I did say cook your food, you can do this all in one machine. テつ I can not wait to get my hands on one to use for a few days, to really test it out, that is if they trust me with it. テつ The Cooking Chef is going to sell about 7,000AED (about $1905) and that is a lot of money to put down on a machine that you think will make your life a little easier.

For me it is hard to work all day and also to make sure that we have something good and healthy to eat, this I believe will make it a lot easier. テつ You just have one machine that looks good sitting out on your cabinets and not four different machines. テつ Also you can set it to cook (you set the timer and temp) and walk away to do other things that need to be done. The Cooking Chef stirs as it cooks, so you do not have to worry about it burning and you can make more delicate dishes, with not much more work.

It comes included in the box, food processor attachments, blender attachment, 6.7L bowl, spatula, small scraper, steam basket, stainless steel K beater, whisk, spiral dough hook, stirring tool, flexi beater, and of course you can get many other attachments. There are about 30 different attachments with this machine, from Kenwood. テつ If you can not find that something special to cook, the Cooking Chef has it’s own Cooking Chef Club, for great recipes.

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Fibromyalgia Awareness Day Event

May 10th, 2010 · Causes, Emirates Arthritis Foundation, Fibromyalgia, UAE, UAE Fibro Community

On May 15th 2010, there will be a meeting in support of Fibromyalgia at Organic Foods and Cafe, located at The Dubai Mall. テつ 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. テつ 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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Interview with Katrina Thornley of Emirates Arthritis Foundation

April 29th, 2010 · Emirates Arthritis Foundation

This is a brief interview I had the other day with Katrina Thornley, Patient Support Director at Emirates Arthritis Foundation.

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Fibromyalgia and Chronic Fatigue Syndrome Awareness Day

April 27th, 2010 · Causes, Chronic Fatigue Syndrome, Family, Fibromyalgia, News

Mark your calenders May the 15th is Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. テつ I encourage anyone that is affected by this, to use your voice to tell your story. テつ By sharing our stories we can help educate and raise the awareness of this very complex disease. テつ 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. テつ 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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Stress Management Workshop

April 23rd, 2010 · Causes, Emirates Arthritis Foundation, Fibromyalgia, UAE

Last weekend the Emirates Arthritis Foundation held a Stress Management Workshop, and it was a lot of fun. テつ As people with Fibromyalgia know, stress can be a big trigger for a flare. テつ This stress can be physical or mental, or a combo of both. テつ It was really nice to hear people talking about how we can manage some of this stress, and to start listening to our bodies. テつ 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. テつ 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. テつ I know we all breath, because if we didn’t we would not be alive any longer. テつ The breath that they were talking about was taking that time to listen to your breath and have some really deep breathes. テつ If we would remember this every time we are in a stressful situation, I bet we would not be as stressed after the event. テつ So a big thank you to Emirates Arthritis Foundation for the Stress Management Workshop, and reminding me to breath again.

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Walkathon video

March 15th, 2010 · Uncategorized

Here’s a video from Friday’s walkathon, enjoy 沽

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Medications to help with Fibromyalgia

March 14th, 2010 · Fibromyalgia, Treatment

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.テつ Letテ「竄ャ邃「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.テつ What the doctors do know is that there are some meds that do help some people.テつ 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.テつ 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.テつ They may include, Tramadol, amitriptyline, and other anti-depression drugs and pain meds. テつ It isnテ「竄ャ邃「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.テつ 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.テつ Most patients with Fibromyaglia have a hard time getting that deep sleep that they need to help their bodies repair themselves.テつ If we can control our sleep, I think many of my problems would be reduced.テつ 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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