Tweeting

I finally set up a Twitter account after much thought and consideration. I don't know that I have it entirely figured out but I'm having some fun exploring. It's only been a couple of days but it has already inspired me to start thinking about creating a cartoon image of myself to replace my tuberose picture that I'm currently using for everything (blog, chronicbabe profile and now twitter).

Since deciding not to change my blog name to include my Fibro diagnosis I'm feeling a renewed sense of commitment to Migrainista. I guess this is sort of a result of that.

Are any of you on Twitter? I would love to follow you if you are.

Struggling to Relax

I'm struggling a little with the relaxation. When I first started doing it I found it pretty relaxing though I could tell that progress needed to be made with the deep breathing. Over the last few days I've noticed that every time I sit or lay to do my relaxation CDs one of two things happen. Either I am able to focus on my breathing and the imagery and such, get sleepy and fall asleep, or I find myself unable to focus, my mind just wandering from topic to topic.

This has been pretty frustrating. Part of me thinks I should try doing my relaxation stuff in the morning instead of the afternoon as I currently do but my mornings are usually pretty busy. Maybe I should get more relaxation CDs so I can have more variety to keep me more engaged. Part of me wonders if this is just the challenge of everybody who is new to doing relaxation techniques.

Have any of you struggled like this when trying to practice relaxation techniques? Any suggestions for me?

Novelty as Pleasure

I recently saw something on TV, where research was showing that the brain actually interprets novelty as pleasure. If you enjoy taking a walk, you will enjoy it more if you are not always walking the same path. If you enjoy going out for dinner, doing so with different people or going to different places will be more pleasurable. This is an interesting concept.

I tend to be a fairly habitual person but I do notice that I also tend to get sick of doing the same thing over and over. I love playing boggle with my husband but if we play too frequently I will get so sick of it that I won't want to play for months. I guess I never gave it much thought but I suppose I ought to.

Since the onset of chronic pain has forced me out of doing many of the things I used to do I think I have gotten myself into even more of a rut. In the past I have avoided doing many things. More recently I have learned that I can't entirely avoid everything and have made real strides to be more active and take more chances. But still my initial reaction to suggestions is no, I can't or I don't want to. Usually, if I do it anyway, I wind up enjoying myself and being glad I rallied.

Perhaps I should put more effort into planning ahead to do something different at least 4 times a month. We live in a new area and there is so much here to explore. It should be easy to find things to do. Today I'll spend some time making a list of things we can do.

Even as I'm writing about doing this, I'm getting excited about having some new experiences and exploring the St Louis area. Do you have a favorite thing to do? Are you more habitual or spontaneous?

Sleepy

I've been able to keep up the new exercise and relaxation program for more than a week now. It's a lot harder on the weekend days because my husband is home and we try to coordinate our activities. We finally had a chance to sit down and talk about all this new fibro stuff on Saturday and he on board with the program now too. I think this will make it easier for me to do what I need to do.

I've just recently increased my dose of Cymbalta as I continue to titrate to the prescribed dose. This increase has made me much sleepier. I'm finding it difficult to function, especially when sitting still like today when I drove to my husband's grandma's house, which is 30 miles. By the time I had arrived I probably shouldn't have been on the road because I was so sleepy. But, of course, I had to drive home. Yikes. Obviously I made it home safe but I'm still very sleepy and have a migraine coming on.

I know this is a side effect that will get better with time. Perhaps I'll just need to stick a little closer to home in the meantime.

Starting on the Path to Wellness

The self management tools I learned about at Mayo were all about pacing, moderation and balance. All of the concepts sound obvious and rather simple; it is about all the little things I already knew I should be doing (and sometimes do) but not enough and not consistently.

I'm a bit of a perfectionist, a type A personality. I tend to want to control things. Apparently this is a common trait among people with Fibromyalgia and plays a big part in why doing these simple self-management things can be challenging. Even today, armed with the knowledge and committed to implementation of these techniques, I find myself wishing I didn't have to make any changes, wishing I could just return to my life as it was before chronic pain robbed me of so much.

Making real change is going to be difficult here. It is going to require me to make myself a priority, have uncomfortable conversations with the people in my life to educate them about my needs and I will need to figure out exactly what I'm capable of and really change my life to fit my new parameters; and then stick to it.

So here it is: this is a list of the components that I will need to add and/or modify to help bring my life and pain into balance and control.

1. Relaxation
2. Decrease symptom focused behaviors
3. Stress management
4. Moderation
5. Positive thinking
6. Communication
7. Humor
8. Leisure/Fun
9. Spirituality
10. Exercise
11. Nutrition
12. Sleep Hygiene

In order to be successful I've decided to tackle the two areas that I feel will be easiest to implement. Then once they begin to become habit I will add an additional component and so on. I picked relaxation and exercise first.

Relaxation: I chose to tackle relaxation first for two reasons. First, a study was done with Fibro patients that showed by simply doing 20 minutes of relaxation/day for a period of several weeks by itself was enough to lower their experience of pain. The more they did and the longer, the more the benefit as compared with a group that did it inconsistently and for less than 20 minutes. The second reason was that I received several relaxation CDs in the class that made getting started easy.
My commitment is 30 minutes/once a day for the first month. Then slowly increasing to 20 minutes/twice a day.

Exercise: I also chose to tackle exercise first because it was something that I had already been doing before we moved across the country. What I learned was that this is something that really needs to be done daily, even if the exercise is simply gentle stretches. I received a couple DVDs and several handouts on the types of gentle exercises that are good for Fibro patients during the class as well. I'm finding that between walking the dog and doing some of these gentle exercises that this is going to be doable for me. And honestly, when I was having all that neck pain during my trip I immediately started doing some of the gentle stretches that I learned in class and found that there was some immediate short term benefit when I did them. I was told that doing the exercises regularly over the long-term I can expect to have more benefit.

My commitment is to start slow with 10-20 minutes daily for the first month, then increase to 30 minutes/daily.

I will document my progress here and tell you more as I continue to implement more of these strategies.

What Are Your Thoughts?

I've been thinking about my blog title and online identity of Migrainista. When I started this blog in January of 2010 all I knew for sure was that I had chronic intractable migraines and were not getting any better despite years of trying medications and such. The name fit because I was trying to figure out how to live the best life I could despite my migraines. Today the migraines are still as out of control as ever but I now know that I also have Fibromyalgia and some other issues commonly associated with the two (anxiety, depression, etc).

Today I can't help but wonder if the name just doesn't work any longer. I've tossed around the idea of changing the title of my blog to Fibromygrainista but don't know if that's such a good idea. On the one had I would like the title to more accurately reflect my experiences and my blog content. On the other hand I've spent the past year and nine months building my Migrainista blog.

What are your thoughts?

Still To Come

I've been trying to do a post on the self-management strategies that I learned during the Fibro class at Mayo earlier this month. Obviously it hasn't happened. I've barely managed to even get up and do the basics (shower, put dishes in the dishwasher, heat up some food). There just hasn't been any energy or ability beyond that.

My migraines have absolutely kicked my butt. The pain has been exhausting and I just haven't been able to even bring my thoughts together enough to do this kind of a post. Eventually I know I'll have a better day and will finally get it up.

In the meantime I'm distracting myself with the new fall season of shows, looking longingly at the book I want to start reading but can't because of the brain fog, fatigue and my eye pain from the constant migraine.

The Changing Face of Fibromyalgia

When I first got the diagnosis of Fibromyalgia the doc gave me a brochure with some info and, of course, I went online to see what the Mayo Disease info site had to say on the matter. Because it is a syndrome and there isn't much of an understanding about what happens to cause it I was pretty much thinking that not much was understood about it at all. Not to mention everyone I told pretty much said the same thing, "Oh, that's one of those things they say when they don't know what's happening to you." ARG!

Couldn't be further from the truth. They still may not understand why this happens to some people but there is a lot that they do understand about the condition. With ongoing research the face of Fibromyalgia is certainly changing. Here's what I learned.

1, Myth: Fibromyalgia is more common in women. Fact: Just as many men suffer from Fibromyalgia as women, they simply present slightly differently than women do. Much like docs used to think heart disease was more of a man's disease until they recognized that it just looks different with women.

2. In order to catch both men and women with an accurate diagnosis the ACR put forth a new diagnostic criteria in 2010 that includes: widespread pain index (past week); symptom severity (past week); depression, headache and/or abdominal pain or cramping in the past 6 months;  and symptoms present at a similar level for at least 3 months.

3. A study was done to look at the level of some neurochemicals present in people with Fibromyalgia compared to those without and it was found that Substance P was 3 times higher in those with Fibro. Other neurochemical imbalances were also present.

4. The presence of Central Sensitizations Sensitivities leads to the heightening of sensitivities to light, sound, touch, smells, foods, medications and such. This CSS is thought to help keep us on a path of continued fight of flight response, which keeps us in this cycle of pain and fatigue.

There was a lot of science and facts presented but I don't want to bore you all with all of the details but that was a short list of what I thought was most interesting and I felt like helped me most understand how real everything is that I've been experiencing.

The Road To Wellness

So the Fibro Class I attended at the Mayo Clinic in Rochester MN last week was tremendous. I have learned so much about Fibromyalgia and I now have a pretty good understanding of what's been going on with my body and my mind over the years. Most importantly I now feel like there is so much that I can do differently that could really impact my quality of life.

The good news and the bad news about what I learned is that 99% of what needs to be done is about changes I need to make in my habits, my thinking and my behavior. In other words, there is no quick fix and very little that doctors can help me with. These sorts of changes (habits, thinking, behaviors) are very difficult to implement and will take a good amount of time. It takes 21 days to develop a new habit and some 6 months to make it automatic or to fully integrate it into your daily life. That being said, this program has had great success in decreasing the pain and fatigue associated with Fibromyalgia and increasing the functioning and quality of life of those suffering with it.

Despite the somewhat daunting nature of making these changes, I am excited that this journey is not going to be one comprised of monthly (or bimonthly) doctor visits where I am trying one medication after another, trying to cope with side effects on top of symptoms. This route appeals to my instinctual self and makes me feel just as empowered as I feel overwhelmed. It is going to be a process - a journey of real value and benefit. It will be a journey of balance, moderation and kindness.

Of course, there is a medication component. I've been prescribed Cymbalta as some recent research has shown the Serotonin and Norepenefan Reuptake Inhibitors (SNRI - sorry about the spelling) to have an impact on Fibro pain in addition to the antidepressant qualities. Honestly, I'm most concerned about treating the depression and anxiety as it has taken a horrible toll on my weight, which is now back down to about 105. I have now lost all of the weight I gained earlier this year on the Amitriptyline. I'm titrating up VERY slowly as it is clear my body tends to over react to everything.

This is getting long so I'm going to stop for today. There is much more to come...

New Fall Shows

I love this time of year for so many reasons. I love the fall weather, getting to wear some of my long sleeved shirts and jeans again, the coming holiday season and the new shows are starting up again. I'm already behind after developing a fever yesterday afternoon that pretty well pushed me over the edge fatigue wise. Maybe tomorrow I'll get caught up a bit.

I like that they don't all start the same week. This gives me a chance to sort of ease into watching and deciding which of the new shows I want to continue to invest in. Inevitably I will find myself sad when one or more of the shows I really loved doesn't find a big enough audience and winds up cancelled. As far as disappointments go, I suppose this is a pretty minor one.

I'm really looking forward to Terra Nova and The X Factor. What new show or shows are you looking forward to?

Ah Anxious Me

Okay, so I was hoping to spend some time today really going through all the materials I got at the Fibro Clinic. Unfortunately, I had to take an Ativan because my insides were still turning from the nerves that built up during the Botox injections. Sometimes I'll get really nervous about something and find myself just getting stuck there. The Ativan has helped on that front, but has also left me quite drowsy and even struggling a bit to focus my eyes.

Perhaps a nap will allow me the opportunity to get stuff done after. I promise by the end of this week I'll start posting about the stuff I learned and such.

In the meantime, do any of you ever experience times like these? The body has a reaction and long after the perceived danger has passed you continue to experience the anxiety in whatever form? I would love to hear about it.

Check out the latest Headache Blog Carnival

The new Headache Blog Carnival is up. This month's topic is about building resiliency. Something all of us with chronic headaches has no doubt had to attempt. Check out these great ideas.

Resiliency

This month's Headache Blog Carnival topic is about building resiliency. I don't know how much wisdom I have to offer right now as I am still in the midst of climbing out of a tough beat down over the summer. That's not going to stop me from attempting to offer up some ideas that I've used before and am currently using.

First I need to share a bit of my philosophy here. I believe negative emotions are just as important, valid and natural as positive emotions. Every now and then you see one of these people on TV, peddling a book or something. Talking about the power of being positive. They will claim that they wake up every day excited about what the day will hold and whenever someone asks "how are you?" they respond sincerely and enthusiastically that they are fantastic. I believe this sort of thinking is unhealthy both for the person and for those around them. It is not possible to be great all the time. If you are great all the time it is because you are stuffing your "negative" emotions of anger, frustration, sadness and such. Meanwhile you are projecting that everything is fantastic and that make those around you actually feel bad. What's wrong with me that sometimes I get sad or angry?

These "negative" emotions are natural and human. We don't need to train ourselves to ignore, stuff or otherwise discount these emotions. We need to honor and experience them because they serve an important purpose in life. Then we need to have the tools to bring ourselves out of these emotions and move forward. Thoughts and feelings certainly influence us as they are remarkably powerful. We just shouldn't get stuck in the negative ones. But that doesn't mean we shouldn't experience them.

A big part of resiliency, in my life, is in honoring these tough times. I like to give myself time to sit in it. Then I'll like start to work through them verbally with people I'm close to and internally with thoughts. I talk about it, blog about it and think about it. Then, with the aid of time, I'm give myself permission to move on. This is a quick and easy process for small things like the stupid pharmacy messing up my Rx AGAIN. The process can also be very slow and difficult like when I had to adjust to living with chronic pain.

The letting go is the toughest part for me. Honestly I don't even understand how it works. Maybe that's why it can be so hard. Any suggestions?

Got Botox

My Mayo appointments have come to an end for this trip. To say that it has been help would be an understatement.

I spent 3 days doing the Fibro Class. During this time I learned a great deal about Fibromyalgia and in doing so I feel like I now understand so much of what has been going on with me these past several years. I got great ideas on how to start making changes that have been studied and shown to be effective in most patients.

I will start sharing what I learned and my journey when I get home and have a chance to start going through all of the materials and formulate a plan on how to move forward.

This morning I got to sit down with my migraine doc. He made arrangements and within a half hour I was on a table getting Botox injections. Quite unexpected. I knew I wanted it and I knew I was going to try to get worked in, but I wasn't expecting it to happen that day. The docs really can make anything happen in a place like that and I'm so thankful he chose to use his MD powers to help me today.

While it's never fun to get injections, after it was over I really didn't feel any different. I didn't have any negative reaction. He told me that it would take 7 - 10 days before I really would feel any effect and that it could take a month or two before I really know if it is preventing any migraines.

Can't wait. I really hope this is going to be my ticket to less migraine pain. Plus, I'm very hopeful and confident that I can make some behavior changes that will impact how much the Fibromyalgia impacts my days.

ARG!!! I tried to refill my Rx for Imitrex yesterday so I could get it before my trip to Minnesota on Monday (which is a holiday). CVS wouldn't refill it saying that the Dr.'s instructions indicated I couldn't take more than 9 tabs per month so my fill of 18 is a 2 month supply. I explained that this was a mistake, that I can treat 9 days, with up to 2 tabs per day so my fill of 18 is actually a one month supply. And this month I actually did that several times.

The rude woman at the pharmacy told me that she couldn't help me, I would have to call my doctor and hung up on me! I knew it was their mistake but clearly they were not about to look into it. I called my doc's office and, of course, he was already gone for the long holiday weekend and wouldn't be back until Wednesday. But I left a message and was told that if one of the other headache docs in the office decided to, they could return my call. About 5:30pm, a lovely doc I had spoken to before called and she offered to call the pharmacy and clear it up, because the Rx clearly stated it was for 9 days/2 per day, not 9 tabs.

Obviously whoever took down the info decided 9 days and 9 tabs meant the same thing, made the change and in the process completely screwed me over.

I got a call back from the doctor about a half hour later.  Apparently the pharmacy put her on hold for 20 minutes and she finally just gave up and left a message. She wished me luck and suggested I find a new pharmacy. I had already had that thought myself. This is the 3rd time they have screwed up my drugs and I've only lived here for 2 months. Of course I have to get this refill fixed before I can do any switching so the error doesn't follow me. As far as I'm concerned this is their 3rd strike and I just have no confidence in their attention to detail. Hopefully I can find someplace that will take my special requests.

Ever have a period of time when it feels like every little thing goes wrong? That's sort of how I'm feeling right now.

Hot Days, No A/C

The misadventure that has pervaded the past couple weeks just got more misadventurous. Yesterday, shortly after finishing my last post I went into the kitchen to wash some lettuce for the rabbit and heard the a/c out back making a terrible noise. Now, our a/c has already given out twice in the past 3 weeks so you can imagine how nervous this made me.

I called right away down to the office. The gal came up to hear it for herself and called up the maintenance man to get his take. He didn't know so she said she would contact the a/c guy and see if he could come by in the next day or two. She offered to bring me a window air unit for the bedroom in case the a/c gave out overnight, which I decided was a great idea. By the time she got back the a/c was making an even worse sound, had stopped working and our apartment was already 80 degrees.

While I've been very thankful for the window unit, this just isn't what I needed. It was over 100 degrees yesterday and today is the same story. I've been camped out in the bedroom with the animals, my meds and Netflix. Sounds like we'll be getting a new a/c unit at some point today but it's already 1:30pm so I imagine I'll end up in here most of the day.

This whole thing has distracted us all from the critters living in the wall and I'll be gone all next week so I guess that won't get dealt with for a couple weeks. sigh

10 Days and Counting

Today makes 10 days in a row with this same migraine. I'm medicating and as soon as the meds wear off the pain is back in full force. ARG!!!

The thought of wasting another month with no kind of preventative to try and the pain this out of control is a bit overwhelming - trying hard not to think about it - trying. It helps that just managing the simple things like making food, doing dishes, showering, etc. become all consuming tasks when I'm in one of these endless cycles of pain.

Just getting through each day right now is a struggle. I've given up on trying to rally everyday to do something. I'm just feeling so run down and each day that goes on like this sort of compounds that feeling. Have you ever felt like this?

Unfortunately, doing nothing isn't quite an option either. A couple nights ago we started hearing little critters moving about in the interior wall between our bedroom and the spare bedroom. I've had to be put together enough to answer the door when the apartment manager and/or maintenance man shows up to check things out. Put together might be too strong of a phrase, really all I'm doing is wearing a bra and comfy clothes that don't look like pajamas. Fortunately I don't have the energy to care what they must think of this strange lady who lives in the dark, nor am I up to worrying about what might be lurking in the walls and what they might be doing.