The Fibromyalgia Experiment

The Fibromyalgia Hug

Sarakastic — Sat, 12 May 2012 13:24:00 +0000

I was kidding with someone who had fibromyalgia after I had given hugs to everyone else in the room. I said “this is how you hug with fibromyalgia” and did an air hug where our skin wasn’t even touching. The burning sensation on our skin can make it pretty difficult to even find solace in a hug. Do you still hug?

Fibromyalgia and Skin Problems

Sarakastic — Fri, 11 May 2012 13:27:29 +0000

I was looking up skin problems that can also occur with fibromyalgia and was quite relieved that there is one that I don’t have. I usually focus on more basic factors with this disease, like how many people can work? What’s their mobility like and do they need walking devices or have they had surgery where they needed a knee scooter rental? Some of the symptoms are just plain weird though.

I read forums where different people were complaining of their skin itching from the inside. They had tried all sorts of allergy tests and treatments to no avail. I wondered if this was similar to the burning sensation on the skin that so many patients describe, but it really isn’t an itching sensation. It sounds like a minor inconvenience when compared to the rest of the pain but I can only imagine how frustrating this would get over time. Anyone out there who experiences this, I am so so so sorry.

Take Breaks When You Can

Sarakastic — Mon, 07 May 2012 06:57:46 +0000

This advice works well for fibromyalgia and also for working from home. There are days when I feel good and I try to get as much done as possible. There are also days when there’s plenty of work and I know just what to do. Sometimes I work far over what I would at a traditional job. With fibromyalgia this can be quite dangerous. I wish I had tv mounts and a better TV for days when I was sick.

However, that means that I also need to relax when there’s time. This means when I’m sick I’ve already prepared in advance for it. I also have learned that when the rest of the internet is freaking out it’s time for me to rest. With every single update I’ve learned that there are tons of different theories floating around. There are plenty of people panicking. Either I can get caught up in it or I can take some time to rest and relax. I know that I will keep going with my job. It’s a time to take a little vacation and wait until a pattern emerges instead of running around. Anyone else feel this way?

What Would Your Impression Be?

Sarakastic — Mon, 07 May 2012 06:55:59 +0000

I was wondering what would your impression be of fibromyalgia if you didn’t have fibromyalgia. I’m trying to think of people that I would’ve met in everyday life if I hadn’t been a part of the fibromyalgia community. It’s helped me to see better why many people have misconceptions about the disease. It’s real to me and a big deal to me because it is my life. It’s hard to imagine looking at it through someone else’s eyes.

That’s the Way It Goes

Sarakastic — Mon, 07 May 2012 06:55:42 +0000

This time when the internet started freaking out about the recent Google updates I had to smile a little bit. Sure, it was disappointing for me too. However, I’ve found out through the years that it’s always something. It’s important to ensure that I don’t count my money before it comes in. Some years I think I’ll be a home owner or at least look at park homes but I never quite get there. I know I will someday though. I also have learned that it’s important not to give up when these things happen. Every year it’s the same thing. People say that this field is dead and it’s only left to the big companies. Every year I have to change what I’m doing. However, with fibromyalgia this is really the only job that I know how to do and it’s the job I have to do. I will keep going and make the necessary changes, how about you?

This is Going to Hurt

Sarakastic — Sat, 28 Apr 2012 23:23:00 +0000

Since I’ve been sick for such a long time I know what my fibromyalgia triggers are and what I can do without getting into a flare. However, there are certain times when I just have to say “I know this is going to hurt, but it’s too important to leave undone” Usually any event concerning my family falls into this category like holidays. I also plan a few extra days where I may be sick and might need to take it easy. What things do you make sacrifices for?

Who’s Your Hero?

Sarakastic — Fri, 27 Apr 2012 23:30:57 +0000

I’m not a mom but just from watching and having a mom I’ve figured out that pretty much this is the most difficult thing on the planet. It just is that much more dramatic when it comes to having a child that is sick. Both of my parents are heroes of mine and I can never repay them for everything they’ve done for me when I was sick. I always try to get nice birthday gifts for momma. I saw a card once that said “I can never repay you…literally I can’t it would be like $7 million dollars”. One of the few good things that has come from being sick is being able to have a very close knit family and constantly be amazed at how giving and loving they are. Who is the hero in your life?

Fibromyalgia FAQ

Sarakastic — Thu, 19 Apr 2012 04:16:00 +0000

It’s been awhile since I did any fibromyalgia experiments because I’ve been so busy trying to build my internet empire. However, I just had a new idea. I think it would be interesting to ask questions and have all of my fibro commenters answer them. Then I can make a page like I have now with the experiments. Also, we can see how other people are dealing with this disease and what kinds of patterns emerge. Are there any questions that you’d like to have asked?

Fibro Had Other Plans

Sarakastic — Wed, 18 Apr 2012 04:18:45 +0000

I had a lot of plans for things that I was going to get done today. I wish I had the energy for a spray on tan and a haircut but I just don’t. However, fibromyalgia had other plans. I go through this every spring which is why I’m glad I keep a blog about fibromyalgia. When you’re in tons of pain it’s difficult to maintain perspective. However, in the Spring I feel better. I get more work done and also start up a better exercise routine. The first weeks of adjusting to this are pretty difficult because I tend to get sicker at first. However, I know in my years of experience that in my case it’s worth it in the end. Did fibro have other plans for you today?

Keeping Your Hobbies

Sarakastic — Wed, 18 Apr 2012 04:15:01 +0000

I have had to sacrifice a lot of hobbies just because fibromyalgia so oftentimes is all about survival. However, losing hobbies also means a loss of self. I think that most hobbies can be modified. For instance, I used to play violin before I got sick. However, I was too tired to go to lessons or play in an orchestra. Plus, my fingers wouldn’t move that way anymore.

I wish that I would’ve transferred to a different instrument. I was looking at the music123 site today. I like that it solves multiple problems especially with the Learn to Play music tools. The instruments often come in packages including a case but also with manuals. My favorite part of the site was the Cash Out section. Trade-in options are also available which I hadn’t heard about now but it would work well in my situation. This means that I may be able to trade the gear that I can’t play anymore into something that I can actually play. Have you either lost or revived any hobbies since you got sick?