32 → Kitchener, Ontario, Canada → Photographer & Web Designer → Fibromyalgia → Aqua & Physical Therapy, Medication.
R: Hi Bekah, tell us a little bit about yourself
B: My name is Bekah, I’m 32 years old and I live in Kitchener, Ontario, Canada
R: What do you do?
B: Self-taught photographer mainly as a hobby these days. Occasional web designer when the opportunity arises and when my chronic health conditions will accommodate the work.
R: What is Fibromyalgia?
B: The Mayo clinic defines Fibromyalgia as a disorder characterised by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Recent studies have found it to be a central nervous system disorder affecting the way the brain processes pain.
It’s not “all in my head” contrary to the skeptics.
R: How would you describe fibromyalgia in your own words?
B: Fibromyalgia is an incredibly painful condition that causes pain to be felt in every area of the body 24 hours a day, seven days a week. Pain intensity varies from day to day. Some areas hurt more than others but that can change in the coming days or even in the next few hours. It’s an unpredictable illness with the possibility of other illnesses co-existing at the same time. It’s like the brain is set on high alert, pain receptors are hyperactive. It’s not “all in my head” contrary to the skeptics. The pain is relentless and it can feel like you’re trapped in a fog. It’s a tricky thing to explain to people who have not experienced long term pain. Sometimes it feels like my muscles are on fire. Sometimes it feels like all my bones are broken. A deep, gnawing pain. Somedays my chest muscles and ribs are so tender it hurts to breathe normally and I feel like I can’t get enough oxygen. If I try to push myself to get more done around the house or go out the pain will only intensify and last that way for days or even weeks. Sleep disturbances, I get nauseated and have headaches for no real reason. I have strained my neck muscles simply by reaching for something on a shelf. Stairs terrify me. I get heart palpitations yet have no cardiac problems. My muscles will twitch and jump for no reason. I struggle in conversation with several people at once, I can’t focus and lose track of words. Most people would be running to an ER but for me, it’s normal.
Sometimes it feels like my muscles are on fire. Sometimes it feels like all my bones are broken. A deep, gnawing pain. Somedays my chest muscles and ribs are so tender it hurts to breathe
R: When did your Fibromyalgia begin?
B: I began experiencing intense headaches in late 2005 shortly after having a root canal. I was 21 years old at the time. During the procedure the dentist didn’t numb me properly and refused to give me extra injections so I felt everything during the 2 hour treatment. I had to return two weeks later for the second treatment and the same thing happened. During this session he also used too much force and caused strain on my right jaw joint leaving me with TMJ dysfunction and mild tinnitus in both ears. Fibromyalgia can be triggered by injury and/or traumatic events. I went to my doctor when these headaches did not go away and the pain started to spread into more areas of my body. She was extremely thorough and ran many tests looking for autoimmune diseases and even cancer. Fibromyalgia can mimic many other illnesses and there are no lab tests to diagnose fibromylaiga. A proper diagnosis can only be made after other illnesses have been looked for and ruled out. It took a year for me to be finally diagnosed.
R: How has your fibro developed over the years?
B: In the fall of 2006 I was given my diagnosis. At the time my pain was so severe I could barely roll over in bed at night, my ribs felt like they were in a vice and would crack with even the slightest movement. My knees and spine had constant burning pain which made walking and bending very difficult, stairs became a thing of fear. I fell on more than one occasion going down the stairs in my home. I had heavy fatigue and difficulty concentrating. I felt like I had broken every bone in my body. When I began treatment very slowly over the next few months my doctor and I were able to get my pain controlled. I wasn’t pain free, I will never be pain free, but we got into a place where I wasn’t constantly bedridden and could finally be more active. It’s a very delicate balance though. I had to learn how to function again. I can’t just get up and go like a normal person. I have to pace myself and not push too hard otherwise I end up in a pain flare that can go on for weeks. It took me about a year to figure out how to balance life and chronic pain. I had to find my new “normal”.
R: Is it the same as when you were a child up until now?
B: When I was a child the only medical problem I had was asthma. I still do to this day but it is well controlled with inhalers. I rarely need them on a day to day basis unless I come down with a cold, that is when the asthma likes to flare up. I was perfectly healthy and normal as a child right up into my early 20’s.
Image via Spoonies Community
R: What does ‘Spoonie’ mean?
B: The term Spoonie comes from The Spoon Theory written by Christine Miserandino. She came up with the Spoon Theory as a way to explain to others what it is like to live with a chronic illness. For Christine her illness is Lupus. Much like fibromylaiga, Lupus forces patients to delegate and use their energy wisely. She gathered up all the spoons she could and handed them to her friend. The spoons represent your energy for the day. She told her friend she now has to plan for the day and how she is going to spend her spoons. Every single thing we do costs us a spoon, sometimes even two or three. When we run out of spoons, we’re done. Now we’re in the danger zone. We can force ourselves to keep going but it’s going to result in higher pain levels and most likely we will be unable to function the following day or even for the rest of the week. So those of us with chronic illnesses have adopted the term Spoonie. Our spouses are the Dish, like it says in the children’s nursery rhyme; the dish ran away with the spoon.
R: How does Fibro affect your normal day?
B: Fibro is with me from the moment I wake up to the moment I go to sleep. Mornings are the worst for me. My pain is higher in the morning. Don’t bother making plans with me in the morning, it won’t happen! I have to start my day out slow. I can’t just get out of bed and jump into action. The simple task of even getting out of bed is a chore. I have to lay there 10-15 minutes to allow myself to wake up before I can even consider getting out of bed. When I do, my joints creek and my muscles are slow to react. I slowly stretch and make my way to the kitchen to take my morning dose of gabapentin. I’m the most functional around noon. It takes my body that long to adjust to being up. The pain never goes away, I just make room for it and live within my limits. Every day is different. Some days I could go out in the afternoon, do some errands or work around the house. Other days my body says no, you need to take it slower, so I have to force myself to rest. I take many breaks throughout the day, if I don’t I pay for it later with more pain.
If I go out to a movie or dinner most people then can carry on, maybe go shopping or out with friends. Most likely I have to go home because my energy is gone. If I force myself to keep going I will be in for a flare up for the next few days. There have been many times where I have had to cut plans short because my body just can’t keep up. There is nothing worse than being in the middle of a shopping mall or grocery store and suddenly crashing and needing to leave NOW. I rarely go places alone because I need a support person.
R: So you wake up in pain!?
B: Yes, I wake up in pain, it follows me wherever I go, like that clingy friend who just can’t stand to be alone. I have learned to embrace that friend, there is no point in fighting with it, I have to make room for the pain and carry on as best I can within my limitations.
It has definitely made me a stronger person. It forced me to get in touch with myself, challenge myself, and learn how to adapt and live
R: Can you fall asleep normally?
B: Yes, it takes me longer to fall asleep than it did before I had fibromyalgia. I need more pillows and a high quality mattress. I have a thick feather mattress topper as well for extra comfort. Without all these things my joints ache and lock up. It takes a while to get comfortable.
R: Have you found any positive aspects of having fib?
B: It has definitely made me a stronger person. It forced me to get in touch with myself, challenge myself, and learn how to adapt and live in a world that isn’t at all considered “normal”. It has shown me how precious life is, how things can change in the blink of an eye. I think it has helped me find out who I truly am and what I want out of life. In a way it has allowed me to be more free and be myself.
R: If you had the option to lose your Fibro would you?
B: Absolutely! Nobody wants to live with chronic pain. However, if a cure is ever found, I would be cautious in the beginning. I wouldn’t immediately sign up for whatever the treatment may be. I’d prefer to wait and see how things play out. You never know what you’re going to get when it comes down to long term side effects of any medical treatment.
Chronic illness really shows you who your true friends are.
R: Do friends or colleagues notice that you have Fibro?
B: Chronic illness really shows you who your true friends are. I lost some in the beginning as I was considered unreliable, “always sick”. It can be hard for people to understand how you feel, that you’re in pain, because we don’t look sick on the outside. The friends that know me best, they can tell when I’m having a bad day without me saying anything. It’s in my voice, the look in my eyes, and in the way that I move.
R: Does it affect your relationship with them?
B: It affected some friendships, the ones who didn’t care to learn or understand ended up walking away. I got married in 2006, just a couple months before my diagnosis, and my illness is one of the reasons why we are now divorced. I’m much better off without these negative and, in some cases, cruel relationships. Stress makes chronic pain worse. Toxic relationships need to be addressed and dealt with accordingly. I’m in a much better place without these relationships and found the love of my life, Daniel.
R: Do you think your life would be different without Fibro?
B: For sure! However, I think that if I had not developed fibromyalgia some of the most wonderful parts of my life may not have happened, especially meeting Daniel. Everything happens for a reason and I think that fibromyalgia pointed me in the right direction, it helped me see what I really want out of life. It’s so easy to take life for granted until we become sick. I know some people with fibro or similar illnesses get offended when people may say “at least it’s not cancer”. Personally I don’t find that statement to be so awful. Cancer is terrible. Chronic pain is terrible but it’s not going to kill me. I have a lot to be thankful for.
R: How does Fibro affect your work?
B: Being diagnosed so young it really didn’t give me a chance to focus on a career. I considered film school for set design and animation but fibro changed those things. When you can’t sit or stand for extended periods of time or work with your hands for more than 20 minutes before they’re burning with pain your options become limited. I can’t have a normal job like everyone else. Some people with fibro can work, some can’t, some can’t but have no choice but to report for work. It’s different for every single person. I picked up photography as a hobby and taught myself as I wasn’t able to attend school for photography. I sell my work online and have developed my skills further since meeting Daniel as he is a professional photographer.
My gallery, Amystika Photography, is hosted with Red Bubble. Amystika is Greek for “a secret place”.
R: Have you officially been diagnosed by a health professional?
B: Yes, I was diagnosed in 2006 by my family doctor after a year of medical testing to rule out other illnesses that mimic the same symptoms. Diagnosing fibromyalgia is extremely difficult and a process of elimination. Currently there are no blood tests, xrays, or scans that can be performed to detect the illness. Although recent MRIs have been done to compare the brain activity in a normal person and a person with fibromyalgia and the results are impressive! The brain of a person with fibromyalgia is much more hyperactive with pain stimuli compared to a person without fibromyalgia.
R: Have you managed to find good doctors who are aware of / or have good knowledge of Fibro?
B: My doctor who diagnosed me was spectacular. She wasn’t quick to give me this diagnosis and made sure we looked into every single other possibility before exploring fibromyalgia. Her knowledge and education about fibromyalgia was the best I have ever experienced. She was so dedicated to my care and well being. She made a huge difference in my life. Unfortunately she retired in 2008.
R: Have you sought treatment?
B: My doctor started me on a low dose of Amitriptyline. This medication is an antidepressant but is used quite frequently in people who suffer from chronic pain. Just because an antidepressant is given to a pain patient does not mean that the patient is depressed. These medication work by blocking pain receptors in the brain. It took some time to find the right dosage for me but once we did the difference was incredible! I went from being bedridden to actually active again. The pain never truly goes away, I have pain every moment of every day but it’s more tolerable.
When my doctor retired, the one that I was with from 2008-2014 was a complete disaster. I have not met any doctor who is so incredibly cruel, rude and obnoxious.
R: Did any treatments work?
B: I have been on Amitriptyline since 2006. In the summer of 2014 I saw a rheumatologist to added gabapentin. That medication is mainly used for epilepsy but is quite frequently used off label for nerve pain. When my doctor retired, the one that I was with from 2008-2014 was a complete disaster. I have not met any doctor who is so incredibly cruel, rude and obnoxious. She treated me like a waste of time. I’ve been verbally abused by her, screamed at and treated like I’m completely worthless.
In the spring of 2012 she put me on a medication that absolutely destroyed my nervous system. My pain was out of control, I was back to being bedridden and had new pain that I had not experienced before. This doctor decided to stop associating with me. There was always an excuse why I couldn’t be seen. I was ignored and left to suffer and take care of myself for a year. I researched this medication and discovered that it should never be given to anyone with a chronic illness and when given long term it can cause serious lung, liver and nerve damage. I stopped taking it and slowly saw improvements.
The manufacturer of the medication refused to speak to me.
I read many reports from fibromyalgia patients who had their lives turned upside down from this drug. I contacted the FDA who confirmed the toxic side effects. The manufacturer of the medication refused to speak to me. When Daniel and I finally confronted my doctor with this information she refused to listen. I tried for many years to find a new doctor but we had a shortage. Finding someone taking new patients was impossible. When I met with my doctor I put my foot down and told her to send me to a rheumatologist. That is something I had asked for years and she always refused, telling me that it would be “useless”. This time she agreed and suggested I find a new family doctor as well. I finally found one in the summer of 2014 and I reported this sorry excuse for a “doctor” to the medical board.
My rheumatologist and family doctor both agreed that the medication I was given was toxic. Most likely I was so ill because my liver was shutting down. The new severe burning pain is from nerve damage. This drug also caused me to develop screaming tinnitus which did not go away once the medication was stopped. My nervous system will never fully recover from the damage caused by this medication. The addition of gabapentin has done wonders for my nerve pain. I had blood tests done every month for a year to monitor my liver function and I am very lucky to be healthy in that department. I was also sent for an MRI which found mild arthritis in my lower spine which would explain my chronic low back pain that was ignored by my previous doctor.
R: Have you been to therapy for Fibro?
B: Physical therapy I find can often make me worse. I have to find a physical therapist who has an understanding of fibro and trigger points. I have not had any sort of mental health therapy, it’s not a treatment that I require, but it can be helpful for others who have a difficult time mentally dealing with chronic illness or find that they are depressed because of their illness.
R: How do you best manage it?
B: It wasn’t easy in the beginning, especially since I was diagnosed so young. My original family doctor was the most amazing, supportive woman. She helped educate me and went above and beyond the call of duty. I researched my condition, bought books, even after all these years I still research and learn new ways to cope. Keeping a positive attitude can really go a long way. Distractions, relaxation, trying to live as normally as possible and not beating myself up when I have a flare and have to take time out to recover. I take my medications, I stretch and do gentle exercise. Sitting around all day only makes pain worse. It’s a tricky balance to figure out sometimes. I use heat and ice packs on areas that may be worse than others. I have a TENS device that use electrode pads to stimulate nerves to break up pain. I try my best to avoid stress. Keeping lines of communication open with friends, family and loved ones go a long way. I have had to learn that it’s ok to ask for help and it’s ok to say no when my body needs extra rest. I can still have a happy life despite fibromyalgia.
I have read that CBT, meditation and exercise help. This is true. Every person with fibromyalgia is different. We have to explore our options to see what works best for us. CBT and meditation are great for stress relief. Exercise is important but we also have to be careful not to over exert ourselves otherwise we will just end up in more pain. Aqua therapy in a heated pool helps many. For me stretching and walking are my exercise of choice. I have a treadmill that I use frequently. Sometimes I use the Wii Fit game on my Nintendo Wii U.
One thing I cannot stress enough though, if your doctor tells you to just eat well and exercise FIND A NEW DOCTOR
R: Or maybe medication, yoga, alternative medicines, or something else?
B: Medications are extremely helpful. It can take time to find the right one or combination of medicines that give the best relief. We all respond to medication differently. Typically narcotic pain medications don’t do much for fibro. Drugs that act on the central nervous system to block pain receptors have the best results. I do occasionally take codeine when I have a bad pain flare and can’t sleep. It will take the edge off so I can at least attempt to get comfortable but it’s not my top medication of choice. I take amitriptyline 200mg nightly and gabapentin 600mg three times a day. Dietary supplements can help some. I take magnesium, it helps with muscle spasms. Maintaining a healthy diet and getting adequate sleep are also important.
Yoga is helpful if your body will allow it. There are instructional dvds, books, and videos on youtube for modified yoga for fibromyalgia.
One thing I cannot stress enough though….if your doctor tells you to just eat well and exercise FIND A NEW DOCTOR. This ignorant way of thinking is one of the reasons why there is so much controversy about fibromyalgia. We are not lazy, we are not complainers. We are genuinely in pain. If exercise and diet were the cure fibromyalgia simply wouldn’t exist. You have a right to pain management, you have a right to have your concerns addressed and do not deserve to be put down and abused by doctors. We need to be our own advocates.
R: Do you feel like you’re in control of your Fibro?
In the beginning, not at all. It takes time to come to terms with this new way of life and learning how to manage it all. In the beginning I felt very much out of control with my life and what my body decided to do that I had no power over. Once I learned more about the condition and experimented with different treatment and management options I began to feel more in control.
R: Research shows that Fibro is genetic – do you know where it might come from? or Do family members have Fibro?
B: There is no doubt in my mind that Fibro can be genetic. Chronic pain runs in my family. My mother has psoriatic arthritis, I have a cousin with rheumatoid arthritis and an aunt with both fibro and arthritis. Looking back over our family tree my mom and her siblings now realize that chronic pain, most likely forms of arthritis and fibromyalgia, were a part of the lives of their parents and grandparents. Back in those days fibromyalgia didn’t have a name but it definitely did exist.
R: Do you tell friends, family and colleagues that you have Fibro?
B: Yes, communication and honesty is very important in maintaining relationships when you have a chronic illness.
R: Do you know others with Fibro?
B: Within my family I have my Auntie Joanne who has been living with Fibro much longer than I have. Outside of my family I have connected with others through online support groups and social media. There is a wonderful chronic illness community within Instagram and I have made penpals from all over the world. We exchange hand written letters frequently and keep in touch online as well.
How do you educate yourself on management and resources? Do you read specific blogs, magazines or news articles? I’m constantly on the lookout for helpful articles and books. In the beginning it was the basics like WebMD and About.com. Wanting to learn more from people who actually share the same experiences I discovered websites as blogs by patients. My favourites being Chronicles of Fibromyalgia, Dawn’s Fibro Blah Blah Blog, This Is My Fibro, Cranky Fibro Girl, and Fightin the Fibro. We have a big list of inspirational websites and articles on my support group as well.
R: Have you read any great books about Fibro?
B: I have a collection of books but my favourites are three written by Fibro expert Devin Starlanyl: Fibromyalgia & Chronic Myofasical Pain: A Survival Manual
R: Or seen any movies?
B: I recently watched Cake starring Jennifer Aniston. While her particular situation is different from mine it definitely showed how chronic pain comes in many shapes and sizes, it’s not a one size fits all diagnosis and how we all cope differently.
R: Or have any great online resources such as youtubers or bloggers?
R: What are your plans for the future for your Fibro?
B: I’m going to be switching medications sometime soon to see if I can get achieve better pain management with less tinnitus. As I mentioned earlier my Gabapentin we have discovered definitely does give me higher pitches mixed in with the sound I was getting used to. The new medication, Keppra, is in the same family as Gabapentin but doesn’t have tinnitus or any hearing problems listed as a side effect. I will have to wean off Gabapentin first before starting the new one which I am not looking forward to but fingers crossed in the end it will be worth it! If not the option to go back on Gabapentin is always there but if I don’t have luck with Keppra I think I will seek out my rheumatologist again to get his thoughts. Medication aside, I’m just taking things day by day. It’s really the best that we can do when it comes to fibro. It’s an unpredictable illness so we have to be patient and live in the now. I find setting smaller goals is better than big goals, I can work up to the big goals by getting there through baby steps. I’m grateful that even with tinnitus and fibro, overall I am healthy; it’s just not the textbook definition health. I keep myself active with my art, exercise when I can, involve myself with friends and family when my body will allow. Daniel is my rock, my love, my best friend. I am very much looking forward to what the future has in store for us. Living in the moment really is the best I can do. I still enjoy my life despite all the challenges.
That was Part 1 of 2 of Bekah’s interview. In Part 2 we discuss the Tinnitus that developed during treatment, and how to best deal with it.
Rodger Hoefel in conversation with Bekah
Cover Photo by Bekah