In the beginning of December, I was lucky enough to go on a cruise to Central America. It was an early birthday gift from family. I went with my mother. I had a wonderful time both on and off the ship but I thought I would discuss the trip so that those of you who may not have cruised before can learn what it’s like to cruise while having fibromyalgia and then maybe I can offer some additional help to those of you who have cruised but struggled to participate in all that you wanted to due to your fibromyalgia.
I feel like the easiest way for me to share this is in tips. For those of us that don’t like to read long pieces, or just want simple helpful hints, I think this is the best way to go. So, let’s get started.
1. Before you even get on the ship, there is so much that we need to prepare beforehand. You need to make a list of everything that you could possibly need during the trip. This includes bringing things that help you daily with your fibromyalgia. So, on top of clothing, toiletries, sunscreen and the like, you should also remember your medicine and supplements if you take any, a cold pack (as many rooms have refrigerators but maybe not freezers), a heating pad, etc. Everything that you plan to pack should go on a list. I made it easy for myself by writing out the list and have two columns after the item, one saying “trip,” and the other one saying “home.”
2. Within list making, it may be helpful for those of us that are foggy (which, admit it folks, is most of us) to really organize your list into categories. An added suggestion here is to, as much as you can, pack by category as well.
3. I learned a lesson on my cruise - I didn’t pack enough clothing. My mother brought small packets of detergent with her but washing the clothes was actually more of a hassle than a help. Make sure you have an outfit for each day of the trip. You can obviously wear bottoms (pants, shorts, skirts) with other tops but you’ll need a new top for each day.
4. Many people bring just the amount of medicine needed for the trip but I bring my entire bottle in the case that we, G-d forbid, need to spend a couple more days after the trip due to travel delays. Bottles generally take up less space than pill organizers anyway.
5. This one comes as a suggestion from MY coach. Be prepared to WALK a lot more than you are used to. Because being on my feet a lot can lead to a flare, my daily goal of walking is 3,000 steps. On each day of the trip, I walked between 8,000 and 12,000 steps and some of those days were days just on the ship. So, while you are doing all this walking and exercise that you are not necessarily used to, DO NOT forget to schedule BREAKS. On days at sea, I would walk around the ship with my mom but even during casual walks, I would ask to sit for a couple of minutes to just give my feet some relief and to keep from getting more fatigued. I worked hard to make sure that when we took a break, I had an opportunity to have my legs up.
6. If walking is difficult for you, you can make arrangements with the cruise to have a wheelchair or scooter available for you throughout the trip. I saw many people of all ages using wheelchairs and scooters. The ship is very large and for some of us, it’s too much on our body to do that much walking. You need to figure out what is the best option for you.
7. If you choose to book excursions (trips off the ship on days where you docked at another location), be aware that the excursion are listed by number and this number indicates a level of difficult, with one being the easiest and three being physically demanding. With the exception of one excursion, I chose only level one trips. In my experience, and keep in mind this is only one trip, there is a large difference between the levels. I chose a level two excursion for one day trip which emphasized minimal walking and I came back to the ship sore, swollen and exhausted. Obviously, you want to get the most out of your trip but not to the detriment of your body. Your health comes first.
8. With all the food onboard, allow yourself to accept that you are going to eat more than you usually do and will probably make less healthy choices because you can. A friend told me to expect to gain two to five pounds even with the amount of activity you do. She was right. While I often chose the healthier meal options, I had more difficulty saying no to dessert than I do when I’m home.
9. Preparing to go home. On the last night of the trip, you have the option to pack your suitcase up and leave it outside your stateroom for the staff to take down and then you can pick it/them up before you clear customs. If your suitcase is heavy or unwieldy, I highly recommend this option. Also, it will make your ability to leave the ship much easier as you aren’t dragging/carrying heavy things that could potentially cause a flare. So, use the checklist that you used to pack and put everything in your suitcase. Somethings you may not need to bring back so make a note stating that you threw it out on the ship. Place your checklist on the top of your suitcase and then you’ll be able to review it all when you get home.
10. Lastly, and most importantly, HAVE FUN!!! Just because we live with a chronic illness and chronic pain daily does not mean that we lose our rights to enjoy life. With these tips, you can have a wonderful trip because you planned for these accommodations before you even got on the boat. Despite some minor setbacks of my own, I had an incredible time. I didn’t miss out on anything that I scheduled due to my fibromyalgia.
This is just a simple list. I could have gone into more detail but honestly, I didn’t want you to feel overwhelmed by the list. If you have further questions, please feel free to drop me a line. I’m happy to schedule a session with you to talk about this or anything else that you might need help with related to your life with fibromyalgia and its co-morbid diagnoses. I look forward to hearing from you soon! Happy cruising! =)
This post was originally written in April 2015. However, a reminder came up on Facebook where I shared this post from my personal blog site and I felt that it might help others living with fibromyalgia to express what they struggle with on a daily basis. Please feel free to share AS LONG AS you give me CREDIT.
Dear mother, father, sister, brother, cousin, aunt, uncle, grandmother, grandfather, son, daughter, friend, co-worker,
In speaking to a close friend recently, I realize that this letter isn’t just important, but crucial. Fibromyalgia awareness day is May 12th, so this letter cannot come sooner. I need to share some important information: Chronic pain is not a choice, it’s not enjoyable, and it’s not faked. Whether it’s LYME, Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Myofascial Pain Syndrome, Lupus or any of the other disorders and diseases that cause chronic pain. According to the Mayo Clinic: “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals”.
We are not looking for pity, and for those that are lucky enough not to deal with chronic pain, we don’t even require understanding. What we do ask for is respect. Respect that our pain is real, that the side effects of our pain and the medications we take for our pain are real.
“How are you?” is a loaded question. Do you want the answer that is given so that you don’t have to hear the whole *sordid* story; or, do you really want to know how we are doing? Because, we, as chronic pain sufferers, are phenomenal actors and actresses. I believe we should win awards for our “I am fine” answer. When we talk to others who suffer from chronic pain, we ask about each other and give a number from 1-10, in terms of level of pain, with 1 being low and 10 being out of control. I’ve been lucky to have some friends catch onto that and ask me with the rating. I guess what we want you to know is that our fine is usually different from your fine. Chronic pain means just that. Hardly a day goes by without some level of pain; however, we do have some days that are better than others. But, just because we “look good”, doesn’t mean we are ready to tackle a marathon or swim from Cuba to Florida (as one fellow fibromite made news – a clear exception to the rule – my mother is waiting for my turn to do the swim – just for clarification, I’ve NEVER been a good swimmer). Some of us are lucky enough to deal with low pain, and some of us are in so much pain, we require aids to help us walk (i.e. canes, walkers, wheelchairs).
Pain affects every functioning part of your body: physical, emotional, psychological, and sensorial. It affects your sleep, often causing disordered sleep. Some can’t seem to get enough sleep and some actually aren’t getting enough sleep. It causes depression and anxiety. It affects all five senses. Because you are in persistent pain, it’s difficult to exercise, whether it be gentle movement or anything at all, on some days. It affects your ability to focus. For me, to be able to sit still is nearly impossible. If I’m watching TV, I’m also playing a game on my computer and texting with a friend. If I am reading, sometimes I need to re-read a paragraph over and over again. Some of us lose time. I am not referring to blackouts, per se; however, for me, I will stare off for what seems like moments and its 20-30 minutes later. We can be forgetful and have what’s called “brain fog”. It literally feels like there is haze around your thoughts. It’s as if you have to wade through pea soup to be able to complete simple tasks. Honestly, sometimes I would prefer the pain to the fog. Up until a few years ago, people were fascinated by my ability to remember things. My long term memory still stands strong; however, my short term memory has become quite weak. I try to play puzzle and quiz games to strengthen this present weakness.
My chronic pain diagnoses are fibromyalgia and chronic fatigue syndrome. Interestingly enough, these are two disorders that my father researched over 30 years ago. There are many overlapping characteristics that fall within these two disorders. I am lucky and grateful that I have had a friend introduce me to support groups (all online) which in turn have brought me more friends that *get* me. It’s nice to be understood in that respect.
So, I am open, as are most of my friends, in talking about our chronic pain disorders. Please feel free to ask me any question you’d like about either of these two disorders. I can tell you how I feel, and if I don’t have answers for other questions you might have, I have places to direct you, including (but not a comprehensive list): Mayo Clinic, National Institutes of Health, and National Fibromyalgia and Chronic Pain Association. Just please understand that chronic pain illnesses are often thought of as “invisible illnesses” because you can’t see visible reason for the pain. This doesn’t mean we aren’t hurting. So, the next time you see someone that you know has a chronic pain disorder, or you see someone walking out of a car in a disabled parking spot with seemingly no difficulty, please don’t judge. Don’t assume. And for goodness sakes, please don’t ever say, “But, you don’t look sick.”
Y’all know what I’m referring to when I talk about using my spoons, right? This is an important concept for anyone living with a chronic illness to know about. It’s especially important to use to explain to someone who does not live with chronic illness. In the case that you didn’t know about it, Christine Miserandino developed The Spoon Theory.
So, on Sunday, I had a lot planned. That was my first mistake. I knew I had to leave the house at quarter to four to pick someone up to go to a late afternoon concert. Before that, I wanted to fold my clean laundry that hadn’t been folded yet, do the laundry that had piled up from last week, clean the kitchen and living room, shower, and get ready for the concert. That’s a lot of spoons, people! Yet somehow my fibro addled brain thought I could get it all done.
HA! That morning, I woke up with my alarm. And, while I got a decent night’s sleep, my only focus was to figure out when I could get back into bed. I try not to make a habit of napping daily but there are just some days where whether or not you do nap, you aren’t going to get as much done because you’ll be thinking about how sleepy you are, how much you need that nap, and your productivity level will drop. So, I decided to not do the laundry. I still had clothes I could wear - plus, it was SO cold outside, I couldn’t imagine getting out of my snuggie unless it was into a warm bed.
Change of plans - no laundry but nap was needed. So, I ate a hearty and healthy breakfast (I think, as I don’t really remember) and crawled back under the warm covers. I napped for an hour and a half (or so), and got up. I chose to start with the least difficult of the tasks and tackled my living room. It took a short time, just picking some things up to throw away and do a quick vacuum and swiffer. Easy enough, right? NOPE. I think I woke up with some of my daily allotted spoons already missing and after this “simple” task? Boom - spoons gone! I still had to shower and get ready for the concert. All other plans were pushed to the curb. I don’t know about you, but for me, sometimes showers invigorate me and sometimes they exhausted me. On Sunday, it was the latter.
After showering, getting dressed, doing my hair and makeup, I was done for the day. But, the day wasn’t done. I had been counting down the days for this concert and despite my exhaustion and pain creeping up, I was NOT going to miss it. So, I went to pick up my friend, waited in line to get our seats and sat down. As soon as I sat down, I felt my body just go slack. I had pushed it too far. Thankfully, this wasn’t a concert where there is a lot of standing up, sitting down and dancing, so I could sit quietly and enjoy the show. I was just worried that not only had I used up my spoons for Sunday, but for Monday as well. And, while most hate ending their weekend, Monday is one of my favorite days as I get to spend a couple of hours with some super cute babies. By the time the concert was over (which was amazing by the way - I sang every song along with them), all I wanted to do was to go home and crawl into my pajamas and get ready for bed. But, I had to drop my friend off, come home and make some semblance of dinner, and then get ready for bed at my regularly scheduled time. As the night wore on, I started to notice even more so that my body and mind were deteriorating with all I expected myself to do - and I hadn’t even done half of it.
I’m not berating myself at all, but I knew my list of things to do was too much for this fibro body to handle. My coach, and friend, once said to me, “somethings are flare worthy,” meaning that sometimes you have to be prepared for whatever may come to you fibro wise in order to do something you really want to do. She’s right. The concert was flare worthy. But, I am blessed to have a flexible schedule so that if I am in a flare, I always have the option to move things around. My time with the babies is voluntary so I canceled that, and took the time on Monday to be kind to my body.
My fibro diagnosis is about five years old now, although my symptoms have been present for much longer. That may not seem a lot to many, but I’ve learned more about what my body can and cannot handle in these five years than all of the rest of the years put together. I’m not perfect, as sometimes I forget and push myself to that flare point (worthy or not). But, with my training as a coach, coaching others, and just learning about myself, I think I have become pretty good at keeping many of the more common fibro symptoms at bay.
Is this something you are struggling with? Would you like some guidance in how to plan for busy days, how to use your spoons effectively, and how to treat your fibro body kindly? Drop me a line and let’s set up a time to chat. You can do that here. I’m looking forward to hearing from you! =)
I recently read an article entitled How A Traumatic Brain Injury Can Lead To Fibromyalgia which I found fascinating considering many people believe that fibromyalgia can be caused by trauma. According to the author, “Any brain injury can result in garbled or mixed signals to the various centers in the body and thus result in a misdiagnosed case of fibromyalgia. The real question is, “Is fibromyalgia a result of a brain injury or another condition?” Doctors are divided on their beliefs as to the possibility of fibromyalgia being related to a brain injury.” So, as I stated before, just as doctors are divided about the possibility of fibromyalgia being related to a brain injury, they are just as divided as to whether fibromyalgia can be caused by any traumatic injury or event.
For anyone who has had a “bump on the head,” the article strongly recommends that no matter how “minor” the bump was to get evaluated and possibly monitored by a doctor to make sure that no trauma has been caused to the head. “Many patients complain of what is called ‘fibro fog’. [This is a common symptom of fibromyalgia.] This is the state in which the patient feels as if they are walking around in a fog and unable to fully wake up. While it could be the result of a dysfunction in the brain and the neurochemicals it may also be the result of some form of brain damage which has gone undetected.
It can also happen from long term chronic pain or inflammation. Occasionally, it is also a side effect of medication that brings on the fog feeling. Fibromyalgia and traumatic brain injury can happen so always check with your doctor if you’ve had a bump on the head.”
I am in no way posting this to scare you but to share one possible reason you can be diagnosed with fibromyalgia.
Also, I wanted to share a bit of my personal story so that many of you can relate. I was born nearly two weeks late. My mother went through a difficult labor (she often reminds me that the pain was so bad she felt her eyeballs hit the ceiling), and I ended up getting stuck in the birth canal. I’m not quite sure how long I was in there but it was certainly enough to be worrisome. Because I was stuck, my mother’s OB decided to use forceps to help with the delivery. I came out okay, with a slightly misshapen head (which is often normal) and appropriate apgar scores. However, I was a “different” type of baby. I slept A LOT. More than the average baby of my age. My mother used to tell me that she couldn’t “get things done” because I was always sleeping (I know many parents would LOVE this option).
My motor skills were delayed (and some still are). I didn’t walk until I was 22 months old. I had trouble learning to ride a bike and I am clumsy. My ability to use my hands in a functional matter is still delayed. The example I often give is that I am unable to pick up a coin from a flat surface. My pincer grasp is immature, so the only way I can pick up that coin is if I slide it off that surface. At nine months old, I was taken to a neurologist because I had some developmental concerns. The doctor noted that I might have mild cerebral palsy but nothing was noted and nothing was done about it. That diagnosis was confirmed nearly 15 years ago as an adult. However, with my background as a special educator, it made sense. For those of you who don’t know what cerebral palsy is, as defined by dictionary.com: “a nonprogressive impairment of muscular function and weakness of the limbs, caused by lack of oxygen to the brain immediately after birth, brain injury during birth, or viral infection.” All of this is coming together isn’t it? Technically, I had a traumatic brain injury.
Now, I was only diagnosed with fibromyalgia 5 years ago. However, reflecting back, some of the symptoms have been there since I was a young child. I believe that my fibromyalgia, in its fullest form, was triggered by another traumatic event that occurred over 10 years ago. I don’t need to go into anymore details aside from the fact that it was post-surgery trauma.
So, this whole idea of traumatic brain injuries causing fibromyalgia is real to me. I don’t necessarily believe that it’s the only way that fibromyalgia can occur as I believe that fibromyalgia is still so much a mystery to the medical world.
Do you feel like your fibromyalgia was caused by a traumatic brain injury or rather a different type of traumatic injury or event? Do you need some help to reconcile what happened to you? I’m here to help! By now, if you’ve been reading my blog posts regularly, you’d know how to contact me. If not, you can drop me a line here. I look forward to hearing from you soon! =)
For those of you who didn’t get to read the first two parts of the blog journey, here are the links:
Let’s continue, shall we?
Time for a new rheumatologist. I sought out recommendations from a community page on Facebook and received many recommendations for this one doctor. He was taking new patients, was a part of my Jewish community (I like to support fellow members if I can, but it’s certainly not a requirement.) and came with glowing recommendations. I made an appointment with a rather short turn around time and eagerly anticipated the date.
The date came, I brought all the paperwork I was requested to fill out, and was excited to meet this highly recommended doctor. As most initial appointments go, I reviewed what I painstakingly wrote out, explained why I switched doctors and awaited what this new doctor’s plan of action was going to be. His response?
“I think before we address any of your fibromyalgia needs, especially related to medication, we first need to address your sleep. Once you get your sleep under control, it’ll be easier to address your fibromyalgia symptoms.”
I responded, patiently and kindly, that I had a psychiatrist who was doing just that and I was comfortable with his work. The doctor put his foot down and insisted that I return to a medication that was no longer working because it is a medication that works for most people living with fibromyalgia. I wasn’t going to get out of this, at least at the appointment, so I agreed to start. I allowed the doctor to give me a script for the meds. I walked out of his office knowing very well that I wouldn’t be seeing him again and wouldn’t be using that script.
I had been out of work for months. I was denied unemployment benefits because I quit my job. And, for some reason unknown to me or any of my friends, I was denied food stamps. I was out of a job, in pain, and without a competent doctor (that’s my opinion of course). I started looking into applying for disability. I completed the documents online and sent requests from all the medical professional that I had seen in the couple of years I had lived in Pittsburgh to send their records. I waited months for a response and received and very thin letter in the mail (think college rejection letter) stating that my needs were not severe enough to qualify for disability.
I had decided to apply on my own because I didn’t think I had the funds to pay for a lawyer. But, once someone alerted me that the lawyer only gets paid if I qualify for disability, I was in. I requested, again, a recommendation for a disability lawyer on that same group facebook page. I called his office, made an appointment, and prepared to meet with him.
I will 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.
Wednesday passed by and no blog was written or posted. Life happens. I was thinking this morning, coming home from a doctor’s appointment, that I can go into all the negative reasons my blog didn’t happen yesterday and then I heard the internal “Screeeeeech” (picture a car braking, hard) and realized that there was no need for me to be Negative Nelly on my blog post. I thought about the appointment that I was coming home from and instead decided to post about that because there was so much positive that came out of it. Before I start on it, please read this post (hint, click on the word post ;-) ).
SLEEP. Let me tell you about sleep. Two months ago, I had an appointment with a sleep specialist that my amazing doctor used her pull to get me an appointment for. He wasn’t taking new patients - but thank G-d for my PCP, I got in. I was excited to meet with him and find out what new MEDICINE he had to help me sleep. Because, while I was in bed for at least 10-11 hours a day, I was getting very broken, very poor sleep for about 7-7 ½ hours. Some people will say, wow, 7 ½ hours? That’s amazing, as I only get 5. Well, we all have our magic numbers for how many hours of sleep will allow us restorative sleep, and I believe mine is/was 8.5-9 hours.
So, I met with the doctor’s resident and talked to him for a long time after waiting three months for an appointment, filling out a 20 page questionnaire, and doing a sleep study for two weeks. My verdict given to me by this specialist was exactly what I WASN’T looking for: a behavioral approach. I was to take two months and complete a sleep diary. Fine. That wasn’t the part I was, excused my language, pissed about. The part I was unhappy about was that this doctor’s approach was to only be allowed in bed for the amount of hours you sleep. So, I was only allowed to be in bed for 7.5 hours. WHAT???? I was given the opportunity to choose the hours that I wanted to spend in bed. Boy, was that hard! I could choose to stay up very late (for me) or wake up very early (for me). When you live a live with chronic illness, sleep, or lack thereof, is one of the top issues that we deal with. So, I was going to deal with it.
I started the plan. I was not to get in bed before 1AM and I had to wake up at 8:30. Those were both painful hours to fall asleep and wake up to, but it was the best compromise I felt I could handle at that time. The first week, even less than a week, was brutal. BUT, then my brain started shifting. I was falling asleep quicker and waking up less and for shorter amounts of time. The big thing, for me, was that after about a month, I started dreaming! I couldn’t tell you the last time I dreamt because I so rarely reached stage four of sleep. And now, you look at my sleep charts and you see that I am sleeping for long periods of time - up to four to five hours. The amount of times I wake up has significantly diminished, and the quantity of time I remain awake has also decreased. Cue happy dance.
This behavioral plan was presented after major research and has been successfully implemented with hundreds of clients. I gave you the short story with a happy ending. So many of us with fibromyalgia struggle with sleep for so many reasons. Are you struggling with your sleep? Would you like some significant help with scientific research behind it? Comment below, send me a message, or set up a complimentary consultation (all of these can be done on this webpage). I look forward to hearing from you!
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.
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.
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.