I’m back after a couple of weeks in Miami celebrating the holiday of Sukkot. I had a wonderful time spending the holiday with dear friends. As you know, I didn’t post my weekly blog last week as I wasn’t feeling well. Normally, I need a couple of days of recuperation, and this was no different; however, during those couple of days I became ill as well. Let me be honest, I’m still not feeling too hot (so I apologize if the quality of this blog isn’t up to the other ones.). I’ve had a bad headache since last Tuesday (I came home last Monday) and have some other unpleasant symptoms that I won’t subject you to. I didn’t want to leave you hanging so I’ve decided to write something brief. =)
As you know, I’ve recently published an ebook called Finding Your Faith Within Fibromyalgia: A Guide to the Jewish Holidays. (Here’s a hint, if you click on the title of the book, you can download your very own FREE copy. - I highly recommend it, but I’m biased. =) ) I’m grateful for those of you that have downloaded it and especially those who have given me some feedback. It’s all appreciated!
I wanted to write about my experience with this holiday that I spent in Miami. Like I said above, I had a wonderful time but that’s because I (with the help of my dear friend) planned so that I could participate in the observance of the holiday. I was able to observe the laws and customs of the holiday while using needed accommodations for my fibromyalgia. Last year, I also went to Miami. I realized the only way I could go to pray in the synagogue was if I had a wheelchair as the walk was too long for me. I asked my friend if she would mind pushing me and she was kind enough to do so. So, this year, in planning my trip. I asked my friend again. She, of course (and I say of course because she is always so kind and giving), said yes. We made sure to get the wheelchair and my friend willingly pushed me to and from synagogue as well as to and from friends houses for meals. Her husband and friends helped as well.
For the most part, I’ve been able to read the signs my body was giving me. So, I knew that in the instances that I pushed myself too far last year, not to do this year. Even though I am on a strict sleeping schedule (from a sleep specialist), when I felt tired and/or overwhelmed, I would take a nap or stay in the bedroom I was sleeping in and read. On days where I was feeling extra tired or dealing with some pain, I opted to stay home instead of joining my friend and her family to synagogue and friends’ houses. As much as I had a wonderful time away, enjoyed swimming in the pool in October, towards the last 2 days or so I was ready to come home. I missed my bed, my recliner and my friends. However, while sitting in the airport and reflecting on my trip, I already knew that I was ready to go back and visit again in the near future.
As MY coach says, “Some things are flare worthy.” This one definitely was.
If you have any questions or comments about travel, accommodations for the laws and customs of your religion, or anything else you might be curious about, feel free to comment below or send me a private message here. If you’d like to set up a free consultation, click here. And again, if you’d like to download my FREE ebook, click here. I look forward to hearing from you! =)
(Here's a friendly hint. Any words you see that are blue and underlined are links. Click on the link and you will find what you are looking for. =) )
Gabapentin is one of the two most common medicines prescribed to help with the symptoms of fibromyalgia. Gabapentin was initially developed to treat seizures and then was found to successfully treat the symptoms of nerve pain. Before my fibromyalgia diagnosis, I was prescribed a low dose of Gabapentin for my Restless Leg Syndrome (RLS). Immediately after my fibromyalgia diagnosis, I was prescribed a much higher dose of Gabapentin to help manage my fibromyalgia symptoms.
As stated above, Gabapentin was developed to control seizures. It’s highly successful in this treatment as it works by controlling brain impulses as well as slowing down the electrical activity in the neural network. By slowing down the electrical impulses, it slows down the impulses that work hard with fibromyalgia to transmit overactive pain messages. One of the main components of fibromyalgia is a hyperactive sympathetic nervous system.
Every medication has drawbacks, including Gabapentin. Everyone tolerates these side-effects differently. One of the major complaints about the drug is that it induces “morning fog,” meaning that when you wake up, for a couple of hours each morning, you experience difficulty focusing and possibly some confusion. With “fibro fog” being one of the concerns with the fibro diagnosis, patients are often hesitant to take the drug. However, most doctors will still recommend Gabapentin because it’s benefits outweigh the potentially bothersome side-effects. My own experience is that dosage is the key thing to focus on. Initially, for me, the dosage was too low so it wasn’t addressing the fibromyalgia symptoms. Then, the dosage was too high and I could barely focus, much less stay awake. The doctor and I finally found a dosage that balanced the benefits and side-effects that worked for me.
I chose to write about Gabapentin because of my personal experience; but, also due to its success for many in treating fibromyalgia patients. Other common drugs that treat fibromyalgia are Lyrica (which is in a similar drug class as Gabapentin) and Cymbalta. It’s important to have an open dialogue with your prescribing doctor in order to find the right medication that works for you. Make sure to note side-effects as it could just be a matter of what time of day that you take the medicine to experience the least amount of side effects.
I am by no means a doctor; however, I am happy to discuss my experiences with Gabapentin and other fibromyalgia related medications I have used. I can share the positives and negatives of all of them. If you are interested in a medication to help with the symptoms of the fibromyalgia, talking to your doctor OR a fibromyalgia advisor/coach can be beneficial. I’m available to help you talk about these issues. Feel free to set up an appointment for a free consultation today. I’m usually able to book you in less than a week from the time you contact me. Looking forward to hearing from you soon!
For those of you who didn’t get a chance to read Part I, I highly recommend you do it as you might be lost with where I start off. Here’s Part I: http://spoonstoshare.weebly.com/blog/my-disability-journey-part-i
Now to where I left off…
Apparently, the doctor’s office that I was attending at that time doesn’t *officially* make referrals but give a list of whatever specialist (in my case, a rheumatologist) that you can choose from. I chose one of the doctors closest to where I live, plus, I I chose a woman in hopes she’d be more sensitive. I made an appointment with that doctor and prior to the appointment, I was sent significant paperwork to fill out about pain levels, and the like. I answered as fully as possible to make sure the doctor had the fullest picture of me that she could have.
My appointment came up, my doctor reviewed my paperwork and asked why I was there. I, point-blank told her, that I believed that based on my symptoms, that I had fibromyalgia. She asked me to specify, even though it was all on the paperwork I completed. She listened, took notes, and then asked me to stand. The doctor examined me and then checked all my tender points. I yelped louder at some more than others but essentially every place that she touched me hurt - A LOT. Higher levels of pain were noted in my lower back, shoulders and neck. The interesting thing that happened was after the tender point assessment, she took my hand and pressed VERY lightly on the pads in between my fingers and that hurt so much I thought I was going to jump to the ceiling! To this day, that is one of my more sensitive areas.
We then sat down again and the doctor told me that based on my reporting, the tender point assessment and physical that I did indeed have the “F” word. As one of my dear friends described it so well, it was a “devastating relief.” It was devastating to find out that I had a life long chronic pain disorder. It was a relief to find out that it wasn’t just in my head. She told me that she prescribed one of two medications to help treat the symptoms of fibromyalgia. Those two options are two of the most common medications prescribed for Fibromyalgia: Gabapentin and Lyrica. I, again, had done my research and according to what I had read, the side effects for Lyrica were much worse than that of Gabapentin (I have now more clearly learned that this is really a case by case basis). I actually was already taking Gabapentin for my Restless Leg Syndrome. The doctor increased my dose significantly and it didn’t work. She increased it some more, it worked some (went from an average daily level of seven to five) but I then became somewhat non-functioning. The Gabapentin made me incredibly foggy and sleepy. After several months, the doctor and decided to reduce the dose again but then I lost the help with managing the pain. I asked to switch to something else and she only offered me Lyrica. I realized it was time to find another rheumatologist who could hopefully provide me with other options.
I’m going to stop there. I know how hard it is for many of us to focus so this will be continue as a multi-part series of my journey. If you identify with some of this, or are considering application to disability, please feel free to reach out and I can help you with the knowledge that I now have from the experience.
I’m Kate Straus and I’m a Certified Fibromyalgia Advisor. I help Jewish women feel confident in their ability to practice their faith while navigating the ups and downs of fibromyalgia. I’m using the disease that at one time knocked me down, to help support others live life to their fullest.