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.
Have you seen the documentary Lady Gaga: Five Foot Two yet on Netflix? If you haven’t I won’t share anything spoiler related, but I will let you know this: the word FIBROMYALGIA is nowhere mentioned in the entire production. Regardless, I highly recommend you watch this film as a fibro warrior, as someone who loves someone with fibro, or just someone who is curious about what it is like to live with chronic pain. As quoted in the article I linked to the title of the documentary, “... her aunt, [was] an aspiring artist who died of lupus at age 19 in 1974. ‘Seeing what that did to [my father] and my family was the most powerful thing I experienced growing up,’ Gaga tells the journalist Darryl Pinckney in the film. ‘I am Joanne. I am my father’s daughter. That is what this record is about.’” As many of us know, a diagnosis of fibromyalgia is more likely if there is a hereditary link and some have said that, even though fibromyalgia is not characterized as an autoimmune disorder, that having relatives with lupus, rheumatoid arthritis, and others can increase your chances of being diagnosed with fibromyalgia.
Some people are upset with the documentary because they feel that fibromyalgia is misrepresented since Lady Gaga is able to do a lot more physical activity than many of us with the diagnosis. However, it is evident in the film that Gaga suffers from chronic pain terribly as she documents a doctor’s appointment, listing the medications she’s taking, and alternative treatments that she uses to help with the pain. Gaga is still human, though, as she has had to cancel tour dates due to being hospitalized from her pain. One of the reasons I have heard that fibromyalgia was not talked about in the film is because she was not yet diagnosed with the disorder. Back to Lady Gaga’s physical activity level, it’s important to note that there are others like her that are able to keep their physical activity level high while keeping the symptoms of their fibromyalgia low or almost non-existent. After watching the documentary, my take on it is that part of the reason she keeps up with the high activity level is two fold. Firstly, it’s what her fans expect of her. She has created a public persona that includes wacky outfits and extreme dance moves. This is not pointing fingers or blaming but she gets her income from her music and performances so she needs to keep that up until she can’t do it anymore. Secondly, with the resources she does have, she is able to be treated for the pain caused by this activity. Depending on how her body continues to react to this activity while determine how long she will be able to put on the performances she has in the past.
I was impressed with the documentary on many levels. She shared how hard she works, how important her family, friends, and co-workers are to her, and how much pain she deals with on a daily basis. The documentary was done well. While it’s part of who she is, I think the “f-bomb” was dropped too many times and some may be offended. Others may be offended by the fact that she takes her bikini top off during a part of the filming. There are little nitpicky things that anyone could find to state how the movie is offensive. However, I learned so much about who Lady Gaga is as a person and what her “real” life looks like. While I expected to hear about fibromyalgia on the documentary and didn’t, I was initially disappointed. However, she made it abundantly clear that chronic pain affects her daily. Having a family history of autoimmune disorders and a current diagnosis of fibromyalgia, I think a lot of the pain she’s dealt with is because she was “Born This Way.” (Get it? Ha!) I recommend this for anyone. Period.
If you are interested in chatting more about the documentary, or anything else fibromyalgia related, reach out to me. I have so much more to say on the film but I didn’t want to make this too long. I think those of us living with chronic pain can identify with a lot of the pain and emotions Lady Gaga deals with. I’m looking forward to hearing what YOU have to say about the film.
What a dreaded name for a blog entry, right? But, how many of you fibro warriors have this on your mind regularly? My guess is that it’s most of you. It’s rare that I encounter someone struggling with Fibromyalgia, or Chronic Fatigue Syndrome for that matter, that hasn’t struggled with weight due to various factors including: medication, difficulty with exercise, poor sleep, the list goes on. So, instead of blaming yourself for the weight gain, here’s some ways to understand why the weight gain is happening.
M G Rana, M.D. has written an article entitled Fibromyalgia and Weight Gain because “a specifically depressing problem about fibromyalgia is gaining weight, even if we eat less we continue to gain weight and due to pain it’s very painful to exercise.” Dr. Rana lists several reasons for the weight gain:
It is estimated that fibro patients in their first year of diagnosis gain have an average weight gain of 32 pounds in the first year. That’s a pretty significant number but it’s not necessarily because of what you have or haven’t done. Dr. Rana give a list of things we CAN do to help abate the gain and possibly help us lose weight. Some suggestions include:
Dr. Rana has some excellent explanations as to why we gain weight so easily as well as suggestions in how to address this weight gain. Please take the time to read the article to help you on your way to feeling better. If you need help, I have helped many clients make dietary changes and I’d be happy to help you. Schedule a free consultation today!
Nearly a year ago, I was informed about an exercise program developed by a fellow Fibro Warrior. Naturally, I was skeptical, as exercise has never given me that feeling that many people get after exercising. You know the one, where you almost have a natural high? Nope, never happened to me, even in high school when I was on sports teams. PLUS, hello, I HAVE FIBRO. EXERCISE HURTS. Right???
So, someone told me about Megan Densmore’s program Zero to Hero. I, of course, was skeptical considering my past with exercise, even when I wasn’t living with chronic pain. However, Megan was offering a deal for a certain period of time that made the thought to try worth the cost. It cost less than a gym membership and it was a one shot deal. Once you pay, you have the exercises and admittance to a private Facebook page, as well as open contact with Megan essentially forever.
Megan’s program “helps you gain the knowledge of how your joints and muscles work and respond to movement in general so that you complete the program better able to apply your knowledge throughout your life. This might mean easing back into whatever you loved to do for exercise prior to your diagnosis but this time with a better idea of how to warm-up and of the signals your body gives you in advance of over doing it.”
Here’s a little bit of my experience, and I’ve always been this way with exercise. I started off pretty excited and gung-ho about a program designed specifically for people with chronic pain that was designed by someone who lives with fibromyalgia. I did well for a couple of months, starting noticing changes in my body (not necessarily much weight loss) but significant muscle gain. My clothes fit differently and I needed smaller ones. And then I slowly dropped days of exercise due to excuses of my own until I stopped completely. I’ve gone off and on the program since then and am working hard to get myself back on the program fulltime.
For those of you worried about joint issues, or back pain, or the like, Megan is happy to show you accommodations to make to the exercises she worked so hard to put together. Despite my own journey of falling on and off the wagon, I would highly recommend joining. The exercises are not difficult (they are primarily Pilates based) and start off slow. Megan is happy to respond to you via email or on the private Facebook page and responds quickly. She is eager to support you and show you that there ARE ways to exercise without exacerbating your chronic pain condition. So, get yourself going and turn yourself from “Zero” to “Hero.” If you have anymore questions, please feel free to contact me and ask. I’m sure Megan would be available for questions as well. Finally, a program designed for people like us, let’s follow it and get on the path to feeling better.
A new study published in the Journal of Pain states that if you connect well with your doctor, it is more likely that your pain will decrease. The authors of the study paired participants with doctors that shared similar core beliefs and values.
With these pairs, they performed a “pain-induction procedure” which simulated a painful medical procedure such as a shot. The patients that felt connected to their doctors reported that they felt less pain than with other doctors with which they didn’t have a connection. It was noted that those with higher anxiety levels also had greater reductions in pain.
These are important findings.
On a personal level, I have a doctor that I trust completely and feel comfortable as her patient. We connect not just on our similar core beliefs and values, but also religion. She has Fibromyalgia as well. We have since become close friends. A friendship probably isn’t as likely to develop for most patients; however, knowing that we share beliefs on ideas that are important to me help me relax during appointments and have less anxiety knowing that she knows what I am going through.
Finding the right doctor is hard. I went through many before I was introduced to this one. If you have friends or family members that are struggling with the same health issues that you are, and have similar core beliefs and values, they would be a great place to start. As a Certified Fibromyalgia Advisor, I am grateful to be connected to a network of coaches and advisors as well as some medical professionals so that I can help clients find the right doctor that works for them. If you are interested in getting some help finding the “perfect” doctor for you, you can send me a message on this website or reach me here. I’m looking forward to hearing from you! =)
Donna Gregory Burch wrote an article entitled 13 Tips for Getting a Better Night’s Sleep with Fibromyalgia. This article is important to me, and I’m sure many of you, as many people with Fibromyalgia struggle with sleep. My sleep struggle has actually been present since I was very young; yet, others notice their quality and quantity of sleep decrease around the same time their Fibromyalgia symptoms begin to appear.
I could write a book on disordered sleep and how to make your bedroom most conducive to sleeping. However, none of these things really help me as I still struggle to not only fall asleep but stay asleep. An important thing to note though is that although they may not work for me, it does not mean they won’t work for you. If you are struggling with sleep and you don’t have a regular bedtime routine and bedroom set up appropriately, that could be part of the problem.
Ms. Burch, in her list of thirteen tips, talks about how to establish a bedtime routine and how your bedroom should be set up. I highly recommend that if you don’t have these two in place, that you follow her suggestions. They are spot on. If you follow these, and the other suggestions that Ms. Burch provides, I would request a sleep study. Having a sleep disorder IS common with fibromyalgia but they come in many forms and only a sleep study could determine what it is.
If you’ve gone through all of Ms. Burch’s suggestions and are still struggling, let’s set up a time to chat. I have had to go through all of these plus more. I still struggle with sleep a lot (it’s probably what affects me most right now); but, I’m happy to offer suggestions and more helpful tips then what is offered here. Looking forward to hearing from you!
I’ve decided to tackle a topic that not many people want to talk about, but many people with the above diagnoses often experience. Before I get to the article, let me explain what the acronyms are for:
CFS = Chronic Fatigue Syndrome
ME = Myalgic Encephalomyelitis
SEID = Systemic Exertion Intolerance Disease.
All of these are different terms for the same diagnosis. In the US, CFS is more commonly used and outside of the US, ME is more commonly used.
I’m sure many more people are familiar with the acronym of IBS (Irritable Bowel Syndrome). According to the article, Irritable Bowel Syndrome in Fibromyalgia and CFS/ME, there is no known reason behind why these disorders/diseases are often connected; however, “we do know that all three conditions can include, imbalances of the chemical serotonin…” In my opinion, IBS is more easily treated that Fibromyalgia or CFS/ME, and it is important to treat the condition as IBS can cause the other orders to become inflamed.
Talking about your digestive system is often not comfortable, but it is important to bring up your symptoms to your doctor so that they can be addressed.
I struggled with IBS for many years, even before my Fibromyalgia and CFS diagnosis. While medicines worked a bit, changing my diet made a larger difference. If you would like some help to navigate this co-morbid diagnosis, OR need help with how to approach your doctor about it, I’d be happy to help!
Six weeks into a new school year, at a new job, I quit. I was hurting physically and emotionally. My co-teacher was extremely verbally abusive towards me and in an 8AM-4PM day, she would only allow me to use the restroom once, and we didn’t get a break. We had to eat our lunch in the classroom and while she was allowed to be on her phone (using social media platforms and texting friends), I was not allowed to use mine. When we went outside, she and the other assistant would sit on a bench chatting away with their “favorite” child on their lap. They’d be on their phones, playing with the kids on their lap, paying no attention to the rest of the children in the class. We were in the infant room and were on a playground that was not developmentally appropriate for this age. Because the other two teachers sat on the bench, it was up to me to run around the playground making sure kids weren’t falling off playground equipment.
There was one day where I was picking up a child to change his diaper, and noticed how much it hurt me. I made a comment about how it seemed more and more difficult to lift these children and the teacher said, “If you can’t lift these kids, this is clearly the wrong place for you.”
Between that comment and all the other comments, she made me feel quite inept despite the fact that educationally and work wise I was more qualified than her. I quit. (This was after mentioning all this to the director of the preschool and getting no support.)
As I looked back during those 6 weeks which were heavily peppered with Jewish holidays (so time off), I realized that I can home in tears and in pain every single day. I reflected back on a comment said in a group counseling session that I attended where, after describing my symptoms, people suggested that I might be struggling with fibromyalgia (something I hadn’t really heard about before), chronic fatigue syndrome, or another autoimmune disorder. I decided that since I was no longer working, while looking for a job, I would connect with my doctors to see if I did indeed have one of these disorders.
The doctor I was seeing at the time was at a sliding fee scale clinic as I did not have health insurance during the time (I was denied due to a pre-existing condition of asthma!!). As I brought up fibromyalgia to this doctor, she threw her head back and laughed saying, “you don’t have fibromyalgia. It’s not even a real thing. It’s an exclusionary disorder at best. You’re struggling with severe depression which can cause pain in people.” Who was I to go against someone who had spent so many years in medical school and as a practicing doctor?
Thankfully, not long after, I was able to get insurance and switched to another doctor. Long story short (as you know I am good at the long stories), I brought up fibromyalgia to the PA I was seeing there. She didn’t deny my thoughts but suggested we do a full blood panel to eliminate any other disorders or diseases that may explain my symptoms. When that panel came back clear, I asked if I could now see a specialist that works with people with fibromyalgia. She agreed to refer me to a rheumatologist.
I’m going to stop there. I know how hard it is for many of us to focus so this will be a multi-part series on 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 of the experience.
Did you know that thyroid disorders are often misdiagnosed as fibromyalgia? Did you also know that you can have normal TSH (Thyroid Stimulating Hormone) levels and still have a thyroid condition? The protocol for assessing someone as to whether they have fibromyalgia is generally to rule out other conditions, especially autoimmune conditions, before making a diagnosis.
Donna Gregory Burch authored an article entitled The Fibromyalgia-Thyroid Connection. If your TSH thyroid test is normal, you better read this… stating that the TSH test alone is a poor indicator of whether or not you have a thyroid disease. Since my teens, I have been displaying symptoms of hypothyroidism (my mom has Hashimoto’s disease) but my thyroid tests have always come back “normal.” It wasn’t until I saw a naturopath who concluded that my thyroid was overworked and needed to be treated, so she sent me to a doctor (my current primary care doctor) who also agreed that I needed treatment. I was put on a low dose of synthroid and it made a huge difference in my fatigue and energy levels. As my body became accustomed to the medicine, I felt better almost instantly.
Ms. Burch interviewed Dr. David Brady, a fibromyalgia specialist about why thyroid dysfunction was overlooked when assessing for a fibromyalgia diagnosis. Dr. Brady commented on the fact that it is possible that one can be diagnosed with both conditions and while they have similar symptoms, they need to be treated rather differently.
In order to evaluate whether one has thyroid disease, Dr. Brady “order[s] a TSH. [He also] order[s] a total T4, a free T4, a total T3, a free T3, and then particularly if there’s any family history of Hashimoto’s, Grave’s or any type of autoimmune thyroid condition, we order what are called TPO antibody and thyroglobulin antibody [tests].” You can find out more about what T4 and T3 are in the article.
If you have been diagnosed with fibromyalgia and are still experiencing fogginess, fatigue, exercise intolerance, muscle aches, thinning hair and more, I would recommend getting your thyroid function testing done. In the article, Dr. Brady suggests that thyroid testing should be done either by a functional medicine or integrative medicine doctor. There is a significant amount of important information in this article as well as many wonderful suggestions. I highly suggest you read the article alongside my very condensed summary.
With lessons from my own fibromyalgia and thyroid diagnosis journey, I’d be happy to help you with yours and get you to a place where you are feeling better. In my coaching course and research of my own, I will gladly help you understand more specifics of thyroid disease as well as help you find a doctor in your area that will do a full thyroid panel. Like I stated above, fibromyalgia and thyroid disease (especially hypothyroidism) have a lot of overlapping symptoms. Don’t let your thyroid go untreated by attributing all of the symptoms to your fibro! Looking forward to helping you out in any way I can!