Medicating Angela: Round 2

The first thing I have to mention is that my doctor rocks, a lot. When I went in for my follow-up today it was obvious that he had been researching fibromyalgia and he even said he attended a talk about it a few weeks ago.  I love that he stays current on information especially when it benefits me, of course. We have a new detailed plan to hopefully get my symptoms under control so I can do things I love again like sleeping.

He explained to me how fibromyalgia is actually overgrown/overactive afferent nerves in the spine which means that normal sensations on the nerves are greatly amplfied and the brain sees everything as more intense then it really is. This is why sleep can be hard, because the brain can’t stop getting these overactive signals it can’t calm down. Fibromyalgia is actually, from what I’ve read, a misnomer and it really should be a nerve disorder (or disease, that’s a huge argument).

The plan now is that I’m going to take Cymbalta daily to help with the overactive nerves and hopefully reduce my pain interpretations and then a muscle relaxant (flexeril) at night to help me sleep. I have a lot of optimism and he said this is a pretty standard starting point for treatment. So I’m going to try the new medications for a month and see him again for an assessment. At the point we either keep going on this plan or he might refer me back to the rheumatologists or a pain specialist.

The hope is that once symptoms are controlled and I’m feeling well that I’ll be able to get back into exercising and be motivated to do things more. I’m also going to keep going to physical therapy for awhile because the massage and stretching really does seem to help.

More Medication Problems

I am still having problems that might be due to side effects from some of the medication we are trying. I had stopped the savealla already and I’ve also noticed had increased issues that I think are related to the lyrica. I have had an upset stomach, head aches, odd moods, fatigue and dizziness for a week or more now. The plan right now is to stop taking the lyrica also and see what happens during the next two days. This means that I won’t be taking anything for my symptoms so I’m a bit worried about how this will effect me. I know I’m already having some issues staying on task, especially at work today when we were working on creating a custom installation pack for Office. I would just suddenly not really know what I was looking for to click on, like I had just drifted a tiny bit and started thinking about something else, until my coworker would tell me what to click on. It’s an odd feeling and may just be due to how tired I am.

Sleep has also been bad again, I keep having nightmares and can’t seem to fall asleep when I want to. I end up staying up late and not getting much restorative sleep. The other odd side effect is the dizziness which happens when I pan my eyes but also sometimes when I’m just sitting at the computer, or reading, or other basic things. It’s almost like this odd buzzing sensation and I just can’t come up with words to describe it outside that it doesn’t feel very good. And to end this all, sometimes I just feel really sad for no real reason. I think that’s more to do with being tired than anything though. I just need to get some good sleep but that’s not happening.

The timing of this is bad because I have finals next week and my competency check-off exam all day on Friday. I study when I can, even when I’d rather just take a nap.

Clear Liquid Fun

I thought I would be feeling better by Friday but that did not happen. I’m not quite as dizzy now but I was still having issues with food. I called the PA back and she told me to add Prilosec OTC and continue with being off the Savealla. She now thinks that I have a virus that’s going to take some time to get healthy from. My immune system has issues now, it’s just not as efficient as it was in the past, so things that some people might not notice can drag on for a long time. A virus is never fun because there’s not much medically that can be done beside palliative care. She also has me trying a clear liquid diet which is as much fun as it sounds.

Foods on a Clear Liquid Diet

• Water
• Tea
• Clear juices (Apple, White Grape, etc)
• Gelatin – they said to use clear but I made my own using fruit juice
• Ice pops – the kind without added fruit (I don’t really like these)
• Fat Free Chicken Broth – this isn’t as bad as I thought, at least it has some flavor

From a clear liquid diet I’m considering moving to a cleaner diet and start investigating my food intolerances better. I really need to drop foods I highly suspect of causing me problems. This includes gluten, yeast, corn, processed foods and sugar. It’s  harder to start this going into the holidays but if my body really can’t tolerate these foods, it’s good to find out. I have been requesting special recipe books from interlibrary loan so that should help. It helps to do this from coming off the clear liquid diet because, hopefully, my digestive system has had some time to relax and repair itself.

Neurobiology Underlying Fibromyalgia Symptoms

A paper was published about a study done looking at brain scans of people with fibromyalgia. I have not read the full report yet but the abstract indicates that people with fibromyalgia have a neurological change in the brain. No one can tell me that fibromyalgia is a “made up” disease. I’m so glad there are efforts out there to study fibromyalgia.

The abstract is listed here: http://www.ncbi.nlm.nih.gov/pubmed/22135739?dopt=Abstract

 

Medication Changes

On the 18th of November, 2011 I started taking Lyrica and Savella for my first attempts at fibromyalgia pain control. I also had some pain medications, Norco, on hand in case I needed some assistance. I am actually out of the Norco now and I’d like to stay off of it if possible. Since about Saturday night I have been having a lot of issues with upset stomach and dizziness. This seems to coincide with the increase in Savella from the titration pack. Prior to taking the Savella, before my diagnosis with fibromyalgia, I had been taking Lexapro for the minor depressive feelings I had. I switched from Lexapro to Savella without tapering off the Lexapro.

Because I was feeling so sick this morning I decided to call the doctor’s office and get an appointment. My doctor was booked for the day so I agreed to see the PA. I have nothing against the PA, she’s been doing that job for years, but there’s just something a little less satisfying about seeing someone that’s technically new to the case. I really would like to know the opinion of the doctor that is doing my treatment.

She thinks that my symptoms have two causes, first being a viral infection and second being side effects from the Savella. The timing makes sense with the increase in dosage. Here’s where I get a little worried though. She wants me to just stop the Savella and see what happens. I had been taking Lexapro (SSRI) and now Savella (SNRI) for over a year total. I’m really worried about withdrawl symptoms because I’ve read you aren’t supposed to stop taking these medications without tapering. She did say that if it was really bad I could just start tapering but cutting the dosage of the medications I have left. I have been taking 100 mg a day and I only have 3 50 mg pills left to work with. Because there is no generic for Savella, it’s quite new, I’d much rather just switch to something like Cymbalta. At this point I feel like I need to call the nurse tomorrow and find out what my doctor wants me to do.

I still feel pretty miserable tonight, the PA even said to take tomorrow off work too. Due to some working from home, sick leave and the holiday weekend, I haven’t been to work in over a week. I’m hoping I’m able to go back on Friday, at least for a little bit. Figuring out medications is never fun and part of me wonders what would happen if I just stopped taking all of them for a little while, let my body detox.

Visiting the Physical Therapist

One of the recommendations that I have read is to work on a stretching and exercise routine plus the suggestion to try myofasical release. I’m lucky enough, in a sense, to already be working with a great physical therapist, Matt Bornschlegl at Proformance Physical Therapy in Lincoln, NE. I called him last week and he has worked with quite a few fibromyalgia patients in the past so I scheduled an appointment for today.

We went through some initial paperwork that will set me up with a score that can later be used to evaluate how exercise therapy is doing. Today we mostly went over my symptoms and talked about fibromyalgia and what that meant. From there he had me heat my back and shoulders and did some light, muscle stretching massage. It was similar to myofascial release but I’m not sure how it relates to some of the routines I’ve read about online. All he did was a basic warm up massage and then did some massage that, in a sense, lengthens the muscle out and hopefully causes some release of tension. After the massage, he set me up with some stretches to do every morning when I wake up and told me to start walking every day, starting with 5 to 10 minutes and worrying about building from there later.

It’s hard to build back up to a place you used to be fitness wise. I used to think nothing of going on 8 to 10 mile treks every couple weeks. It was my way to get out and enjoy the world. I used to ride my bike around 20-30 miles at a time and I rode my bike to work nearly every day. Now I’m not sure how much I’ll be able to get back to but I’m trying my best to stay positive and take it slow.

(Oh and if you go to Proformance because of this posting, please let them know that Angela B. sent you!)

Fibromyalgia “Flare Up”

Last night was rough and I believe it was due to a major flare up in my symptoms. Fibromyalgia means that my “fight-or-flight” reaction is stuck in the on position and my body is constantly prepped for something dangerous to happen. When the body is stuck in this state for too long you become over sensitive to even ordinary stimulation. This includes sound, smells, touch, heat, cold and some foods.

In order to try and reduce the acid in my system I drank some baking soda mixed in water which is a common natural health recommendation. I’m not positive that’s what set off the symptoms but I have a good guess that it is. The reason is set me of may have been due to the sodium increase or an allergy to baking soda itself.

Shortly after drinking the baking soda mixture, while finishing my homework, I started feeling sick to my stomach and eventually the pain in my muscles started up. What happens in fight-or-flight is that your digestive system slows down, heart beat increases, and your muscles tense in preparation.

When the muscles are constantly tight in this preparation stage they are very vulnerable to injury. Also, due to lack of deep sleep associated with fibromyalgia, the muscles do not have the same chance to heal. Lack of deep sleep greatly reduces the amount of growth hormone necessary for repair and other functions.

So all night when I got close to getting some deep sleep my body would jerk me awake. If the body senses danger it won’t allow you to get the deep sleep you need. This is one reason why people with fibromyalgia are so fatigued.

So now I need to keep track of what is causing my symptoms. I really need to watch my electrolyte balance and make sure I’m eating healthy, whole foods. I need to work on figuring out what my triggers are and eliminating them from my diet or environment as much as possible. One suggestion is to buy some HEPA air filters and high quality water filter.

Employees with Fibromyalgia

I found this great document created by the Department of Labor that highlights the issues that employees with fibromyalgia may have. I printed out a copy and gave it to my supervisor. It contains a lot of good basic information fibromyalgia and how it can effect an employee’s work and what accommodation can be made.

http://permanent.access.gpo.gov/gpo9388/FibromyalgiaA&CSeries.pdf

I made a pie

So with Thanksgiving coming up I figured I should find something to make that I know I can eat. I found a recipe for a Raw Berry Pie on a Fibromyalgia website and decided to give it a try. I did make modifications to the recipe, however, because the amounts they had didn’t work out well for me.

Requirements:

• food processor
• 9in Pie Plate

Ingredients:

• 28 Dates, no pits
• 1 cup Blackberries
• 1 cup Blueberries
• 1 cup Raspberries
• 2 Bananas
• 8 oz of Raw Pecans

Directions

• Place half the pecans in the food processor and process until fine
• Place 12 dates in the food processor and process until well mixed
• Press first batch of crust into your pie plate
• Repeat the process and make a second batch
• Press the second batch into you pie plate until it’s completely full
• Place 2 bananas, 5 blackberries, 5, blueberries, and 5 raspberries into the food processor, don’t worry about cleaning it
• Puree the fruit mixture
• Fold in remaining fruit
• Put fruit mixture into the prepared crust
• Refrigerate before serving

I have not tasted the pie yet but the fruit mixture was quite good.

Life Changes Now

I’m starting to hit an acceptance stage with my new diagnosis and it’s time to start making the changes to help my health in the long run. One big challenge will be to re-think my dietary options and find ways to stick to my restrictions without going crazy. It sounds like a lot of raw recipes are the way to go. I actually found a recipe today for a berry pie that uses a raw pecan and dates crust. Hopefully I’ll be able to start making more foods that are healthy for me.

I need to work on keeping my stress down and eating right. This will mean some changes but it won’t be disastrous since I should be eating health anyway. I’m starting my changes some what slowly but I don’t want to spend too much time transitioning because I want to do anything that will help me feel better.

I want this blog to be a really reflection of what’s going on in my life and hopefully be a resource for other people with fibromyalgia. I’m willing to try all the options and report back on how well they work. The one problem with fibrmyalgia is that it varies a lot from one person to another so there’s never one easy cure.

My next big challenge is Thanksgiving, I need to figure out what I should eat and what I should avoid. This may mean making some extra foods I can eat but I’m OK with that.  The thing I’m most worried about is eating out but I’ll navigate that as it comes around.