“Open your heart to your suffering”, Toni Bernhard
There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’. Often thought of as malingering, hypochondriac, weak, attention-seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system that cannot sustain itself in a healthy manner any longer.
It is as though we have overstretched the central nervous system just as a rubber band might become less elastic after constant overstretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal.
In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue, and myriad of other symptoms with which we are faced.
I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be curedof the pain, fatigue, intense itching, depression, anxiety, nausea, flu-like symptoms, and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard:” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.
I want to encourage readers to read this book as the daily/yearly experiences of Toni Bernhard are so similar to many who write to me often (and painfully), wondering how to keep on keeping on. After reading her book I decided to practice her exercise which she calls “drop it”, similar to ‘letting go’. As my anxieties escalate during the day I deliberately think about the thought I am having at that moment then I consciously drop it.
I live with the focussed anxiety of having a flare-up from fibromyalgia/chronic fatigue, living with a huge painful herniated L4-5 disk, and worrying about having another heart attack, all the while knowing I must exercise at least 30 minutes a day in spite of the pain. So, for me, the anxieties are almost constant. Dropping the thought has been very helpful.
I can’t say it lasts a long time, but I have been keeping on track and repeating the phrase over and over. In short, as I have been writing about for years now- I am trying to change my brain and short circuit that trodden down path to another that is called ‘living in the moment, or ‘mindfulness meditation’.
I no longer speak of my fibromyalgia/chronic fatigue with health care professionals- the search for answers is fruitless. I can experience joy if I live in the moment and not look back to a life that I can barely remember- one without pain. I can not predict what tomorrow will bring. I only have it now.
There are many of us living with medically unexplained symptoms, such as those fibromyalgia/chronic fatigue, multiple chemical sensitivities, Gulf War illness, and post-traumatic stress disorders, most of which are also called somatization disorder, a label that can place us in the realm of psychiatric investigation and therefore denigrated by many health professionals.
As Toni Bernhard has written: “As you experience the unpleasant mental sensations of being treated in a dismissive manner by this medical person, instead of reacting with aversion, consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity– directing the sublime state at yourself”.
This is the essence of mindfulness meditation- being kind to ourselves- exploring our thoughts without criticism, without judgment. In the words of Jon Kabat-Zinn: “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally” (Wherever You Go There You Are).
There isn’t any other way for us to proceed: we can’t change our diagnoses by lamenting, ruminating, seeking one treatment after another, or depressing about our conditions. Now comes the difficult part- practice-practice-practice what I preach. Be kind to me and open my damaged heart to my suffering, without reproach or wishing for what cannot be!
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”, Maya Angelou
On June 3rd I heard a documentary on CBC radio talking about the mark of shame, the culture of shame, and how it makes one feel. There is so much about the visibilities of women’s bodies that cause us to hide perceived imperfections, in particular, the dyeing of our hair so as not to look old, plastic surgery to hide our wrinkles, overuse of cosmetics, whitening of our teeth, even the marketing of products to enhance the color of vaginas!
We can never measure up to the standards set for us by the big businesses of the multi-national corporations who prey on our insecurities. The cosmetic industry is constantly thinking up new ways to make us feel insecure and shameful if we do not keep up the appearances of a youthful women. We must always be thought of as sexually desirable dictated by our outward appearance.
That isn’t to say that I am morally judging those who use whatever means they can to feel good about their outward appearance. Rather, it is meant to point out that we are often prone to hide the fact from ourselves that we cannot stay or look like we are in our 20s forever.
While none of this understanding of women’s attempt to look like the Hollywood definition of beauty was any surprise or new to me, having taught in a women’s studies program for many years, nonetheless it got me thinking about conditions that areinvisibleand about which we have shame because we cannot measure up to standards of health, for example, with fibromyalgia.
Fibromyalgia is a syndrome about which people often sigh and believe we should not indulge ourselves in lamenting about our pain and fatigue, as well as a myriad of other symptoms, rather we should just smarten up, ‘suck it up in order to feel better. I believe that health professionals are among the worst as the condition cannot be diagnosed through the usual medical tests and there is no known ‘cure’.
But, family and friends also blame the ‘victim’, even though I hesitate to use that phrase as we are not actually victims. Of course, this attitude of others makes us feel shameful about ourselves and the self-critic, ruminating voice within believes we are malingering and should become less vocal about admitting we have such a dis-ease, that we are asexual and sickly creatures.
The disdain that many health professionals and many of the general public portray to those of us with fibromyalgia can make us feel like we are hypochondriacs. The syndrome itself is a stigmatizing label all the more so because it is invisible and we look healthy. In her April 13th blog, Carolyn Thomas (www.myheartsisers.org) writes about Healthy Privilege.
She quotes Dr.Ann Becker-Schutte who writes: “Many physical health conditions and all mental health conditions fall into the category of “invisible illness”. Furthermore Dr.Becker-Schutte writes about those who are healthy and do not “see or understand because they have some degree of what I am calling healthy privilege”. I have found this to be even more obvious now that I have two invisible conditions: fibromyalgia and heart disease.
Several years ago I decided to let my hair go grey and not blow dry it straight as I did every day. I let it dry naturally and do not blow heat on my head, letting the natural curl do as it wants. I do not use make-up and use only moisture cream that does not have any of the nasty ingredients that are so dangerous to our health and cause so many sensitivities and itching.
Eye make-up is not an option as I am sensitive to it and to light and my eyes will burn and water if I use cosmetics on them. I have gradually let go of all the social demands to try to look younger than I am. It hasn’t been easy. As I look back on these almost 100 blogs I am always stunned by the hundreds of comments on itching. Until I gave up on most cosmetics I too found itching to be a serious problem.
I know many cases of women with serious allergies who continue to dye their hair and wear eye makeup and other cosmetics that actually induce itching and sensitivities. In fact, I have given in to the shameful, stereotypical view of the older woman who appears to no longer care about looking younger.
While I can do this to my bodily appearance, I cannot hide the pain and fatigue from myself but I do often hide it from others. It can be a sign of weakness of character to admit I have a hyper-aroused central nervous system. I don’t like this label. My casual appearance these days is amazing to many who do not know me intimately. I am told over and over how well I look; how natural I appear; how healthy I look; how I do not look my age.
Many cannot understand that appearances are deceiving. The shame for me is that I relish these compliments. Why would I want to tell them I am suffering from post-traumatic stress syndrome five months after a heart attack, that I live with pain and fatigue from fibromyalgia, and that I am taking many medications for heart disease?
I want to belong to the club of those with Healthy Privilege, not the clubs of those of us with an invisible disease of the cardiac sort who often induce fear in others about their own hearts, nor the dis-ease of fibromyalgia which has a stigma attached to it. These are the challenges we face living with conditions that cannot be seen; how we handle them is a sign of both our vulnerabilities and our strengths.
Having Fibromyalgia is like a roller coaster ride. Most days I just don’t know how I am going to feel. I try to have a positive mindset and I find it helps when I’m around others with a positive mindset as well. However, I realized that not everyone wants to hear or see positivity right now. Frankly, I can understand that – I use to feel that way too. I started to realize I have a choice in either suffering from fibromyalgia or fighting it.
I was not always positive about my attitude towards my illness. In fact, you can read my first article on admitting I was sick publicly, Coming Out With An Invisible Illness. In addition to not being positive, I didn’t want anyone to know I was sick. It was like my dirty secret.
Telling people I was sick was admitting it to them and myself.
Admitting I was sick might mean I wasn’t able to fulfill my goals.
If I admitted I was sick I might have to slow down and put myself first.
How can I put myself first, when for so long I have put others first?
If I put myself over others, I would feel selfish.
I said a main reason was I didn’t want people to feel sorry for me. I said that because really, I felt sorry for myself and was ashamed of that feeling.
If people knew, they might think I was weak.
Staying in denial meant I didn’t need to make any changes.
My self-esteem was too caught up in how others viewed me (still is). If they thought differently of me, like I was less than I used to be…. maybe I was less than.
This way of thinking only made my illness scream louder at me that I needed to stop. Fibromyalgia is hardly ever on its own. On the contrary, it has a web of other illnesses that usually come with it. So pushing my mind, body, and soul beyond its limits is something Fibromyalgia does not like. When my body finally gave out on me, I had to face my illness and myself. Doing something like this makes a person go through the stages of grief. So, one of those stages is finally acceptance, right? That is what happened, I accepted I was sick.
In doing so I became very depressed. I did what I had been dreading, I felt sorry for myself. The negative self-talk was going like crazy at this point.
“I don’t know how I’m going to do my job anymore”
“I’m a horrible mother, I can’t even take my son outside for a walk”
“How can I finish school? I can’t! I’m going to have to quit”
I know you can relate to some of these. Honestly, this way of thinking and living can take a person down a dark path. You might be asking, “Why are you telling me all of this?” Well, friend, I am telling you to show you how deeply negative my thinking can get. So, how do I pull myself from the negative to the positive you so often see from me?
Yes, I make a choice each and every time. I choose to find some light in the darkness and so can you. It takes practice and a little effort, but I’m confident you can do it. Here are some steps to help you through.
Write down all the positive qualities about yourself and save this for later.
Mine would be: sense of humor, kindness, wit, intelligence, & empathy.
When a negative thought appears, pull out your list (if you need to).
This is where you remind yourself of the positives from your list.
Yes, I have fibromyalgia and I’m in pain. However, I am also funny and can laugh at myself. I got this!
Yes, I am feeling depressed right now. It seems to be pulling me farther into the darkness and all seems hopeless. However, you have pulled yourself out of darkness like this before! You are strong-willed and determined and you got this!
Put this on repeat (believe me it takes practice).
Now you may be saying this is great, but this alone can’t change my negativity. This is true. There are more tools you can use to keep yourself positive.
Mindfulness– yes, meditation can help keep you focused. There are many different types of meditation available. I encourage you to pursue one and make it a daily ritual.
Gratitude– I learned in my positivity psychology class, that one of the ways to pursue happiness is to show gratitude. Give it a try by writing a letter to someone you know that did something nice for you. Simply put, let them know how much that gesture meant to you and thank them. Trust me on this- it will feel good.
Goal setting– You might be thinking this is where I lose you. This one will be different for everyone. Some of us are really very sick and can barely function. I know there is a goal you can set for yourself though. I recently set a goal of walking for 5 minutes every day. To those who can easily walk longer, that might not seem like much. However, to those who can’t even walk 5 minutes you know how big that can be. Making your goal small and obtainable will leave you feeling positive when you accomplish it.
So, are you fighting your chronic illness? Or, are you suffering from your chronic illness? This is a choice only you can make. It is personal and individual and there really isn’t a right or wrong answer. You can even do both sometimes I know I do.
Fighting your chronic illness means that every day you choose to keep going, even when you think you can’t anymore. It means that you consciously turn your negative thoughts about yourself and your illness into something positive. Lastly, fighting your chronic illness means that you will not be its victim.
Suffering from your chronic illness means that you let your illness control you. Don’t get me wrong, our illness always controls us in some aspect whether we like it or not. However, when we suffer, we have no choices, we are the victim.
As you can see, in both these scenarios we have the same illness. In one we feel more in control than we do in the other. As I said before, there are days I am fighting fibromyalgia and days I am suffering from it. The difference is the way I choose to look at it, with positivity or negativity. We can’t control that we have a chronic illness, but we can control how we handle it from here.
Fibromyalgia is such a complex condition. It affects you physically, cognitively and emotionally. Sometimes, if forces us to change who we are or suffer the consequences. This is where I have a hard time because I have dreams and goals and I’m not ready to give them up. Today I woke up feeling the weight of fibromyalgia on my body and my soul.
Most people hate getting up in the morning. I know very few people that just jump right up and seize the day. It is a process, am I right? Most days are hard to get going for me, as I’m usually stiff and hurting as soon as my eyes open. I try to do some stretches in bed to help ease it but some days are harder than others on that front. So I pull myself up from lying down and sit there for a bit, trying to gain strength to move my body. The weight of myself feels unbearable.
On days like this deciding to take a shower or not is a major decision. I think on one hand it could help loosen my muscles and relax me. On the other hand, it could take so much of my energy I might be done for the day. I try to get up two hours before I have to leave for work so I have time to adjust to the whole mess. Then there is the catch 22 of if I’m having a really hard day it is almost impossible to get myself up that early.
It isn’t just the weight of my body that is causing me trouble. It is my mind as well. I can’t seem to think to make a decision as simple as taking a shower or not. It is like a weight is being put on my brain and I just can’t lift it no matter what. It is days like this that I fear driving myself to work. Will I be able to react as quickly as I need to? Will I remember where I am or where I’m going? These are valid concerns that I’m sure any fibromyalgia warrior can relate with.
This weight continues on throughout the day making finding words difficult. Sometimes I feel like an idiot as I try to stammer through a conversation where I know I sound stupid. But I am NOT stupid and you are NOT either. This is what fibromyalgia does to us though. Being cognitively impaired is a result of the weight of fibromyalgia.
The impact fibromyalgia has on my emotions is sometimes greater than all others, especially on days where I have been struggling consecutively. As I have explained in my article Fibromyalgia and Mental Health, I have been battling depression my whole life. Fibromyalgia can take that depression and increase it tenfold sometimes. The weight of fibromyalgia on my emotions plunges me into darkness and it takes a lot of strength to pull myself out. The anxiety and worry over everything get to be too much and make me more exhausted. All the while, I have to push through and go to work each day because I have to, not necessarily because I am able to.
In the end, the weight of fibromyalgia hurts my soul. I tend to be a pessimist however, I work really hard to stay positive or at least re-direct my thoughts. My soul captures all this pain, agony, and fatigue and I have to decide what to do with it. Do I let it drag me down further? Or do I give up? Do I call out sick and lie around and feel sorry for myself? For me personally, the answer is NO!
I know I’ve painted a pretty grim picture, but it is my truth and probably for some of you reading this as well. The above is how I feel almost every day at some point during the day. How do I get through it? Well, one foot in front of the other my friend, one foot in front of the other! I feel I have no choice but to keep fighting, keep re-directing my thoughts, and keep finding ways to take the weight off of me. Here are some steps I take to pull myself out:
Exercise: I know with all I said, you might wonder how. Believe me, sometimes I wonder as well. I modify my exercise to the daily ability I have. If it is a tough day, maybe I just walk in place a few times throughout the day and add in some stretches. I give some ideas on how fibromyalgia warriors can exercise in The Spoonie Exercise Challenge.
Healthy Eating: I have found that I overall feel much better when I put whole, real foods into my body. This may seem like a no-brainer, but when you are addicted to sugar it can really be a hard challenge. In a couple articles I have given some ideas on Healthy Breakfast Ideas and also How To Start An Elimination Diet if you want to check those out.
Planning: This is a tough one, because you can’t always plan for a flare or know you aren’t going to feel well. I plan my meals out each Sunday and try to prep as much as I can. I enlist the help of my family in all areas they are willing. This is also often where I have a hard time as asking for help in the right way can be a challenge for me. I use my planner and write out all my responsibilities for the week. This helps with the brain fog and just keeping myself as organized as possible.
Meditation: Admittedly, I don’t use this one as much as I should. But, it has helped calm and center me. I like to do breathing exercises to calm myself and take my mind off my anxiety at the moment. Sometimes, when I am at work and the weight of everything feels too much, I just close my eyes and focus on my breath for a few minutes. It doesn’t fix everything but it does help get me through the moment.
We talk a lot about how fibromyalgia affects women but did you know that men can have it too? I want to introduce you to Ted Hutchinson, That Gaming Dad! We had a really good conversation about everything from getting diagnosed, living with fibromyalgia as a man, and advocating for our community. He not only tells us how much harder it is to get diagnosed as a man but how to re-create your life after a fibromyalgia diagnosis.
Ted talks about what goes on behind the scenes for someone living with a chronic illness like fibromyalgia and CFS.
Ted explains to us that he initially was treated for “acute injuries” and it took eight years to finally get diagnosed. His symptoms started with back pain and exhaustion. He had to finally find a doctor who had experience with fibromyalgia to get diagnosed. This is when he realized there wasn’t a simple fix he remembers thinking, “cool….we can take care of this and I get back to my normal life, right? Unfortunately, that wasn’t the case and it has been a very long road.”
For Ted getting off the pharmaceuticals and finding holistic ways to improve his symptoms has been key. The medicine he had been on had made his life worse than they helped. He has found cannabis and Kratom to be the most helpful for his symptoms. Ted tells me that Kratom is a cousin to the coffee tree and has different strains that have different effects. Some strains help with anxiety and depression, some are like an opiate replacement, and some are a coffee strain. It can be addictive and should be used in moderation. It comes in many forms like powder, capsules, and leaves and can be digested.
“My pain never goes away, but I can take the edge off it to at least know that I’m not going to overexert myself.”
“I was addicted to opiates and that was something that happened through doctor prescriptions…Cymbalta! I would rather go through opiate withdrawals than ever come off Cymbalta…that time of my life was some of the worst hell I ever felt.”
Ted tells us what it is like when there is a stigma around the man being the breadwinner of the house. “There is a myth that men can’t get this type of illness and it just isn’t true. He goes on to tell us how he sees the issue, “You just have to re-create your life. For me as a man, it was important to just put myself out there and share my story and just explain to people why this can affect anybody, really.”
I think you will walk away from watching this video and feel inspired that you can still find a way to live a fulfilling life. I have given some quotes from the video here, but honestly, they are best heard directly from Ted in the video.
“Everyone has a path…you’ve got your own journey to go on. For me it was my gaming, my advocacy, it was sharing my story…I can still do it in this capacity, just when I’m well enough, right to be able to share my story.”
I had to share this quote in its entirety as I felt it was so inspiring. This is Ted’s response to being asked what advice he would give someone with fibromyalgia:
“Have faith in yourself. Have faith that you have the capacity to be able to overcome whatever it is that you have to go on. Does that mean you are going to overcome and go right back to being the construction worker or working 50-60 hours a week? Maybe, maybe not who knows. But Have faith in yourself that you can re-create a life for yourself and create things that are positive influences not only to yourself but the people around you. So, while you may get this heavy burden that has been put upon you. You have a duty to be able to take that burden and hopefully be able to lighten that own load for yourself. You yourself don’t’ deserve to have to carry that all by yourself. There are people out there that love you and people who do support you. You just have to be able to step outside your own self and look at the big picture and have faith that you can overcome anything. Not even in a religious aspect just faith in yourself. Believe in you!”
Ted has built a community with his video gaming on Facebook. His community talks about important issues while playing. He also uses this platform to connect with his kids and bring those in the chronic illness community closer together.
“Even if you are sick, even if you have things going on you can still make a name for yourself and you can still put your name out there and you can still make a life. It just may be a different life than you were used to.”
Meet Jessica Hooten, she is a fibromyalgia warrior who chooses to find the silver lining about her diagnosis. In this video, she tells us all about how she was diagnosed with fibromyalgia, treatments she has tried, and how she handles getting through each day. Secret: She does it by finding the humor in fibromyalgia.
Jessica, like many of us, has had sleep issues. She has been to a rheumatologist and a sleep doctor to try to ease her symptoms. Finding treatment and answers can be difficult and Jessica shares her journey with us.
“You don’t want to have something….but can they just find something, so we know what to do.”
Finding a good primary care doctor has been what helps Jessica. She is lucky to have a doctor that is trying to understand her condition.
Jessica works and tells us how hard it can be sometimes. Some days she struggles to get to work. Many of us can understand this feeling. How does she get through it? She just goes, because once she gets there she knows she will be ok. She is also fortunate to have understanding co-workers.
Fibromyalgia has become so normal for Jessica that she often forgets that things that are going on with her are because of fibromyalgia. She states it takes her longer to heal from surgery than someone that doesn’t have it. She gives a lot of advice on what helps her day-to-day pain (so make sure to watch the video).
They tell me it is not progressive, that it doesn’t get worse, but I feel like it has.”
How does Jessica stay positive? One way is that she and her husband joke about it with each other. She keeps in perspective that although she may be hurting, there are people worse off than her. She gives some advice:
“You have to just accept it.
“It’s going to be ok. You are going to have another good day…when it comes you will appreciate it.”
“Knowing what makes you feel better and doing those things.”
She has support around her and they keep it light-hearted and help her find the humor in the day-to-day struggles. She is thankful but also does get depressed. The challenge of keeping fibromyalgia in perspective is a day-to-day fight. A fight that she is willing to do with a smile on her face.
You never want to hear your doctor say, “your brain MRI came back abnormal.” The fear and panic that go through your body at this moment are overwhelming. My MRI revealed a pituitary adenoma. I know there are so many of you out there that have gone through this same situation and know just how I felt. For those that have never experienced this, I have written this article to spread awareness.
According to Cleveland Clinic “A pituitary adenoma is a growth or tumor on the pituitary. Most pituitary adenomas are slow-growing and benign.” Any adenoma bigger than 1 cm is called a macroadenoma. It is interesting that some adenomas can actually produce hormones, however, mine is not doing that. Mine was detected because the adenoma is pressing on my pituitary gland preventing it from producing the necessary hormones I need.
In researching adenomas, I found out they are more common than I thought. According to the Pacific Pituitary Disorders Center, 10-20% of the population has a pituitary adenoma and probably doesn’t even know it. I guess so many of these are so small they don’t cause symptoms. In addition, they are the third most common of all intracranial tumors. Luckily, 90% of these are benign and slow-growing, which is most likely what I have.
My journey to an adenoma diagnosis started with a visit to an endocrinologist. This doctor did the most blood work anyone has ever done on me. He tested my hormone levels and that is where he discovered that my estrogen and progesterone were very low. At first, this was a comfort to me because it explained so many of my symptoms and why I wasn’t getting any better. I was highly emotional, severely fatigued, had extreme brain fog and several other symptoms.
It can be tricky because many of these symptoms are also symptoms of fibromyalgia. This is why it is so important for doctors to not put all of our symptoms in one diagnosis box. Too often, they are chalking it all up to fibromyalgia. Although, these symptoms will still be present with the fibromyalgia they wouldn’t be to the extent I was experiencing them and for the amount of time. This makes me so mad, I can’t even explain how mad. We really need to overhaul the United States healthcare system and doctors need continuous education! I suffered for much longer than I needed to be suffering. Worse yet, my concern was disregarded by my doctors and I was made to feel like I was exaggerating my illness.
With the abnormal hormone levels, the doctor suggested we do an MRI. He told me that the best-case scenario is that I have a tumor pressing on my pituitary gland and if so it can easily be removed. Of course, this sent me into a mild panic. However, he reassures me that it is a simple procedure where they go up through the nostril, removes the tumor and that takes care of that.
Going into the MRI and waiting for the results, I really didn’t know what I wanted the outcome to be. I know that I was kind of scared, but also really relieved that there was something tangibly wrong with me. Anyone that has an invisible illness can understand this feeling. Seeing doctor after doctor look at you and treat you like you are faking it, can take its toll on a person. I’ve actually had a primary care doctor turn me away because my case is too complicated!
To address my hormone levels the doctor gave me estradiol and progesterone that I have to take in a complicated way. Well, it sounded complicated to me. I start the estradiol on day 1 of my cycle (the first day of my period), then I start the progesterone on day 15. I take both until the 25th day of my cycle, then start all over again on day 1 of my period.
At first, I was super intimidated by my new pill schedule since I have such a hard time remembering to take my pills. By the way, I’m on my second month now and I’m actually doing pretty well at remembering (pat me on the back). So the purpose of these pills is to replace the hormones that my pituitary gland is not producing. However, like all pills, they have side effects.
I have been experiencing migraine headaches on a regular basis and extreme menstrual cramping. I don’t know if there was a worse word than extreme- I would use it. That being said, my symptoms are improving. My extreme mood swings are getting better and I think I’m a little more pleasant to be around. The other symptoms are hard to tell because they blend in with my fibromyalgia symptoms. For instance, I am still fatigued and forget the words for everyday items I should know the word for.
It was a long week waiting for my MRI results with all kinds of scenarios running through my mind. What it’s like only a person with anxiety can come up with. So, it figures that I would get a severe cold with a fever and not be able to go to my doctor’s appointment for the results. I had to wait longer. I called the doctor the next Monday and we talked over the phone. The bad part of having this conversation on the phone is that your time is more limited and you don’t think to ask the questions you should ask.
My doctor told me that the MRI shows a 3-millimeter adenoma pressing on my pituitary gland. This is too small to operate on. Typically, an Endonasal Endoscopic Surgery is done. This is where they go in through the nostril to remove the tumor. This procedure is less invasive and has a high success rate. It figures that mine can’t be operated on. Not to mention, I forgot to ask how big it has to get to operate or how long it typically takes to grow as I should have. In the meantime, he raised the dosage on my medicine and told me we will watch it every 6 months.
I am stuck knowing there is something growing in my brain that should NOT be there. That sucks and is scary. I am also stuck with the side-effects of my new medicine that really, I have no choice but to take. Then there is my anxiety. I have to work hard at keeping it at bay. A person who has anxiety plays the “what if” game a lot in their head, so it takes conscious effort to not play that game.
The moral of this story is if your doctor isn’t looking for another answer and checking all the boxes, then find a doctor that will. If you know there is something else wrong with you, then don’t give up. I have no idea how long this thing has been growing in my brain, but I do know for the last year I have known deep down that something wasn’t right. If any of this makes you want to get involved, then I have the perfect organization for you. Support Fibro is an organization that is dedicated not only to awareness but education. This is so important because like I said above doctors are not educated enough on fibromyalgia! I have even had a rheumatologist tell me she shouldn’t even be treating this condition. Please click the link for Support Fibro and if you are able, make a donation or find a way you can support the cause because a Fibromyalgia Warrior you love needs answers.
This is a guest post from a fellow Fibromyalgia Warrior. Vicki tells us her journey with her mental health issues. In addition, we learn how hard it is to get diagnosed when you have fibromyalgia and then get appropriate treatment. Vicki tells us how the trauma in her life has exasperated her fibromyalgia and other ailments.
I was diagnosed almost a year and a half ago; after a year and a half of going to different doctors and saying, “I think I have fibromyalgia or Chronic Fatigue Syndrome, or both”. Most of them didn’t listen to me. My PCP didn’t diagnose either one.
It started with my legs swelling enormously after a plane trip to PA for camping. All through the trip, I was exhausted, working on schoolwork, and using a cane to get around. It’s not the first time the cane was needed.
I already saw a neurologist for migraines and sleep apnea—so I was already using a CPAP but still falling asleep during the day. I was already seeing a Psychiatrist and Psychologist. They both thought that my medication regimen was fine. They sent me to see a nephrologist for the swelling in my legs (fine), a cardiologist (fine), a colo-rectal specialist to make sure there was no bleeding (fine), my gym (fine), and finally PT for lymphedema treatments (didn’t help).
Ultimately, I ended up having to sit in a recliner with my legs elevated still higher on pillows, still in incredible pain all over, I couldn’t put my legs down (and still can’t for the day) or they would swell. Finally, I had to wear compression stockings as well, and I bought my own TENS unit for pain. I got a prescription for a cane and a walker and started the process for disability. I finally got in to see a rheumatologist—the first available appointment was in 4 months.
I was first diagnosed with depression and anxiety by my personal doctor (in a state I am not currently living in), in 2005, just after my mom died. I went to her because I was having difficulty coping with “work, school, and home”. She thought it was just short term and prescribed me some anti-anxiety med and something for depression.
When my (now) ex-husband found out about it, he threw the pills away and told me that I didn’t need them—that I just needed to straighten up my life. He was extremely abusive and suspicious of everything I did. So I started getting the medication filled at the hospital I worked at, and taking them at work (I kept them in my desk drawer). I would hide pills in my pocket to take on my way home from work in the morning. I couldn’t take them at home, because he would make me empty my pockets when I got home.
I started having trouble keeping a job. I went to work as a travel nurse initially, so I had time to look around at the hospitals in the area, find out who was hiring and what was available. The travel assignment was working well for me, so I signed up for a second assignment with the same place…that’s when they started breaking small parts of the contract. Since I worked night shift, there was no one to talk to when it happened. The hospital felt vindicated because staffing was low.
I was floated to areas where I had no experience and given patients I should not have been taking care of. My company didn’t really stand up for me, but they were understanding. They told me just to break the contract without any repercussions, but they didn’t have any other assignments in the area. I took an interim job in a nursing home to cover the next three months.
During that time, I was sick more often than not. My doctor said: “Your immune system is shot. You have been in fight or flight mode for too many years. Now your body doesn’t know how to behave.”, he had no other advice. I thought I’ll just have to live with it and get over it. He changed my psych meds and sent me for counseling which did help somewhat, but I never really connected with my counselor and I think it was too soon to talk about all the trauma I’d been through.
After being “unlawfully fired” from my next job, and collecting unemployment; I was also fired during my 90 day probationary period from the next job, while I was out under doctor’s orders. Since it was probation, they were allowed to fire me at will. At my next job, I was also frequently ill. I was working at a children’s hospital so I didn’t think too much about it.
That was the year I came down with H1N1 flu and almost ended up in the hospital with adult RSV (yeah, adults can get it), I had shingles (unusual at my age), found out I had thyroid disease (but not in-depth studies) and saw a cardiologist for the first time. You see, when I lived back on my own down in the other state, I respiratory arrested one night at work. My heart never stopped beating, but I stopped breathing—and came to in the ED with the code team working on me.
Everything was fine and nothing showed up. They observed me in the ED for the rest of the night and let me go home in the morning. When my current doctor heard about it he sent me to a cardio, and I went through all the testing and everything was fine. No one has ever found a reason for my sudden, almost dead.
The doctors decided that it must have been the start of my immune system rebelling. Even at the children’s hospital the Infectious disease specialist asked me if I had an immune deficiency and I told him not that I knew of. I had myself tested for HIV, and all the Hepatitis stuff just in case (due to my ex). Everything was clean. Of course, we were constantly changing my psych meds because it was very hard to control my anxiety and depression. I was diagnosed with PTSD in 2009.
In so many ways! The first time I saw the rheumatologist he said I had a severe case of fibromyalgia. Severe? Did I start with severe? All 18 markers were positive. Sadly, I was already walking with a cane most of the time. In addition, I had already stopped working. I couldn’t go back to work until I had my health under control—I would miss too many days and be fired.
I can’t even plan for part-time or PRN nursing because they count on you, and I really can’t be counted on for any particular day. Everything makes me tired. Walking the 10 steps from the chair to the bathroom is an effort that wears me out. I can’t sleep flat on my back anymore, I have to sleep in the recliner. I’m incontinent at night. My right leg and right arm (dominant side) seem weaker to me. And they both go weirdly numb at odd times of the day for no reason.
I can’t wear jewelry because it just hurts. I have to wear loose and soft clothing because clothes hurt my skin. Taking a shower is horrendously painful because it feels like needles are hitting my body—like when you have a sunburn. Now, I don’t drive because of the medication I’m on, so I’m dependent on my husband. I can’t stand in the shower, so I have to have a chair. I get short of breath and tired easily. Getting dressed can be horrible. If I am wearing pants—my husband has to pull them up for me, very often. I’ve gained weight.
I have a hard time concentrating on anything. I did finish my BSN and started my MSN—but it’s in teaching nursing; so, I can’t finish it. I can’t do the clinical portion. I’ve lost touch with friends. I’ve lost friends because I don’t have the same things to talk about. This makes me feel isolated and alone most of the time. I am angry that it has taken two years and two denials, and a hearing, and I still don’t have social security. They don’t see all of this as a disability. I am mostly afraid at how much worse this can get, and how it will change my husband and my lives. He is also disabled and considered unable to work per the VA.
I still haven’t pinned down what puts me into flares, although they have become less frequent with time. I know that I have more flares when I am overstressed. Right now I have stopped taking classes for my second BA, and am just trying to relax. Otherwise, I have no idea.
I was exercising sporadically prior to my diagnosis. I did yoga occasionally and walked occasionally. I always got in at least 10,000 steps at work at night. I’ve been encouraged to exercise, but I can’t walk. I got a stationary bike (because I’m unstable on my feet), and I sometimes go to a friend’s house to swim. I can’t do yoga anymore because I can’t get on the ground (because my right leg doesn’t work right).
Because of my PTSD, I am fearful of going alone places, I don’t like to be in crowds or with people I don’t know, I don’t answer the doorbell or when someone comes to the door (unless I know one of our friends is coming). I used to hide in a back room—but over the last 10 years that’s gotten better. I wouldn’t shower while my husband was away from home. I have to sleep in view the door no matter where we are and how many people are with us (camping). I still sleep poorly due to nightmares on a recurring basis about things that happened or could happen in this reality—and then sometimes dream him into parts of this reality he isn’t involved in.
When I was able to be very active (and when I was working—not that long ago) exercise did not help. Keeping myself from getting overtired DID though. A regular sleep schedule helped a lot. Meditation and breathing exercises to help with the anxiety helped as well. If things were particularly bad, I would do a reiki session on myself (I am a reiki master). I don’t know if diet helped—but moderating alcohol is always a good idea. Counseling helped once I found a female counselor who was able to work well with me.
When I am having a particularly bad flare, I find that my night-terrors and nightmares increase. My anxiety during the day does not seem to increase to me, but my current husband said it does (when I asked about this). When my depression is really bad, my pain is so much more noticeable. When one part of the system has a breakdown, the whole system has a breakdown. It is always true in life. When you have a cold—don’t you always feel awful all over, even if it’s only a head cold?
I currently take Lyrica for my Fibro, which is relatively new. It is helping tremendously. I had to fire my rheumatologist to get Lyrica—he wouldn’t give it to me. I take it twice each day. I also take Methotrexate once a week, and Plaquenil once each day. I also take Baclofen as needed three times a day in graduated doses for muscle spasms and stiffness. Pilocarpine for dry mouth and eyes three times a day and I use drops in my eyes. I use Cannabis for pain control (sparingly).
Previously, I was on Plaquenil twice a day, Gabapentin three times a day, Pilocarpine three times a day, Baclofen 20mg three times a day (not as needed), Tylenol with Codeine for pain every 6 hours, drops for my eyes, Meyers Solution infusions once per week. I found out that the Meyers Solution was just the vitamins I was already taking and stopped them because insurance wouldn’t pay for that (and it was over $100 each infusion).
I was started on Methotrexate pills once a week (what I’m on now). My “numbers” weren’t improving, so they switched me to injections weekly. I was still having pain so they changed my prescription to Imuran. I was on that for six weeks—in constant agony, the pain was worse, nausea uncontrolled, it precipitated migraines, and I literally could not eat. Now I do take a med (not for diet, but because I can never stay awake) that curbs my appetite. But while on Imuran, everything either tasted like it was rotted, or just the smell of it turned my stomach. Also, the swelling in my legs started again and got worse. I haven’t gotten it under control yet.
The current preparation of medications I take now, along with Cymbalta in the morning, helps more than anything. It’s not perfect—but I doubt that anything will be. I haven’t found out what precipitates my flares yet (I guess I haven’t been diagnosed that long?), besides stress. My immune system was already not great before I started taking drugs that can suppress immune responses (Methotrexate and Plaquenil); so that’s a concern. I currently don’t have a rheumatologist—but my primary care said that she’s never had a patient that was happy with one in the area. She’s also never had one that worked well with her on a holistic approach to the patient as far as care goes; so she usually is the one that has to monitor and change all her medications to fit his profile. My neurologist said the same thing.
Find doctors who COMMUNICATE with each other to treat the WHOLE person!!
I’ve been being treated for my mental illness for much longer than my fibro. However, when I received my diagnosis, the Psychiatrist I was seeing at the time changed my medication to Cymbalta at an equivalent dose to my previous medication. Cymbalta does have some pain control properties and is used for long-term pain patients. Recently, due to the problem with chronic fatigue, my anti-anxiety medication was changed to Valium because with long-term use it tends to cause less sleepiness or drowsiness than immediate (or as-needed) medication, or some of the newer meds for anxiety. A Psychiatrist I saw previously had recommended Welbutrin and Abilify for my depression. All of those together just made me into a functioning zombie.
I see a therapist for depression, take the Cymbalta and valium. That’s all now. My psych doc moved away and had a long discussion with my primary care. He said that she was fully competent to manage my meds unless I needed hospitalization again—In which case I would need to find another psych doc. We did try to keep me on the Welbutrin for a bit to see if it would help me quit smoking and overeating, but it didn’t—so we dropped it. It really wasn’t helping me so why take it?
I was hospitalized in early 2018 for depression. This happened when I went to the ED and voluntarily “Baker Acted” myself. I was also too ill to go to psych, so I had to be admitted to the hospital first (I had an abscess). Like so many of us with chronic illness with no cure; I just was feeling worthless and hopeless. We have financial difficulties. The house is a mess. Frustratingly, I can’t get up and cook dinner. I can’t exercise and I’m already overweight.
I was a productive member of society with a calling to heal and help people and it’s been taken away from me. My identity for my adult life had been wrapped up in my profession. Now…I felt like I had no identity. Sadly, I had lost most of my friends, or at least they were too busy except for the occasional e-mail, text, or short phone call. Then, I was bored with coloring pictures, drawing, reading, and playing video games. I mean really—what use is that to anyone. I couldn’t help myself, much less my husband. And he was taking on greater and greater responsibility caring for me; when he needed care himself.
Did I have a plan? Not really, but I didn’t really need one because I had a drawer filled with toxic pills, right next to the chair I spend every minute of my life in. I didn’t need a plan. I needed a reason not to have a plan. This time talking to the people who loved me and hoped they could talk me off the ledge wouldn’t do it. I knew I needed help, so I checked myself in. It was a big step to check myself into the hospital I used to work in. Scary. Even with privacy laws, in the workplace, things get around.
I spent a lot of time going to every therapy session they offered—even if it seemed silly. I spent a lot of time talking to the director of the therapy department and the social worker. What I needed wasn’t hope. I needed a plan to change my way of thinking about my life. I needed help to see that I could still be vital. I needed to see that I wasn’t a drain…and I needed hobbies that didn’t just use the time when I was awake, but challenged my mind and kept it going in vital directions. It was amazing. And the things I learned there are the things that I work on with my therapist still. They are the things that I try to work on still when I tend to fall into those dark thoughts.
I probably wouldn’t have been hospitalized for depression without the Fibro changing my life completely.
I have been almost constantly treated by a Psychiatrist since 2006, and a therapist that specialized in patients with PTSD on and off since then. I am currently seeing a therapist with the credentials of LMHC, LMSW, and a Masters’s degree in Clinical Psychology. (Licensed Mental Health Counselor, Licensed Master of Social Work). She does specialize in patients with PTSD. She does use CBT, and others I have been to have used it also.
At this point, we only use CBT therapy if I have recently had severe night terrors, nightmares, or flashbacks. If I have had anxiety attacks, we have to get to the root of the problem. Sometimes it does not involve my PTSD.
For me, at least initially, CBT was incredibly painful. That’s why I have seen therapists on and off. I was in an abusive relationship for what was about 20 years and almost didn’t live to tell about it. My most recent psychiatrist was very gentle with me about it. I expected that by this point, after over 10 years, I would have progressed beyond the point that I have. He sat me down and said, “you were basically a prisoner of war for 20 years. Don’t minimize your pain or symptoms by saying that soldiers have been through worse. I have read the transcripts from your protective order. I don’t know of anyone who has been through worse and lived. And you seldom complain. What is worse…you never talk about it.” I was ashamed that I had “let myself” get into that position. I blamed myself for my abuse. I blamed my abuser as well—but I had fallen into the trap that I should have left him earlier.
CBT makes you confront the worse memories of (for me) abuse, relive it, confront it, name it, see it for what it is, refuse to accept responsibility for it, take control of that memory and detach yourself from it. I couldn’t do it properly for the longest time, and I’m still working on it.
CBT does help. But it took me years before I was ready to relive those memories. The only thing I can say is; the timeline is different for everyone. Be honest with your therapist instead of just stopping therapy.
I think that everyone who has Fibro needs to be in the therapy of some kind, even if it is only speaking to a Pastor/Spiritual counselor if they have one. It can be so hard to deal with on your own. Our loved ones see it every day and live it with us. Other people with fibro go through it with us and support us. But it helps to have someone removed from our situation that we can talk to freely about how we feel; without feeling like we are burdening them. I know, for my part, that I don’t like to “complain” to my family and friends. As far as my fibro friends…we like to be positive and build each other up. But sometimes you just don’t feel that way. Without an outlet for the hard thoughts, and someone to talk them out with, the depression from just the pain and changes to our lives can spiral downward until it gets too bad to handle. There is no shame in therapy.
My mental illness began before Fibro entered my life. However, fibro has made it worse. It adds to my depression. Also, I have nothing to relate pain to except the days of my abuse. Pain is a trigger for me. In my sleep, if my pain becomes severe it will trigger night terrors or nightmares.
I’ve done extensive studies with my therapist and doctors. It has been shown that there is a possible link to people who have been through past trauma developing immune disorders later. Because I have PTSD, the immunologist was not surprised at all that I have fibro or other issues such as Hashimoto’s. Or that I have had shingles twice and that I get sick more often than most people. She put it this way: people who have been through past trauma are still fighting—even if they think they are not. In their mind, they still are. Their bodies are still producing, or have produced, a certain level of cortisol and reacting to the fight or flight response. The brain has no time to worry about “being healthy”, it is only worried about staying alive at the moment. The immune system can take over healing later. The problem is that the “later” never comes…and the body develops all sorts of immune problems. For some people it may be fibro, for some, it may be lupus where none was in their family before…or they may have a genetic predisposition that the trauma switched on. Trauma, even if it is dealt with very early in life, can work as a switch to turn on predispositions in genes.
Nothing in our bodies is separate. The body works together as a whole system. There is always a reason for the “why” even if we can’t find it. Research into fibro is really in its early stages….infancy really. And we don’t know as much about mental illness as we think we do. ECT therapy was all the rage in the 40s-50s. Then it was considered barbaric for so long. Now we’ve found out that it actually does help with depression, done with sedation (much more humane) and at much LOWER dosages, targeted only at certain spots. Treatments for mental illness change constantly and new medications are coming out all the time.
The study of the brain and how it works have been separated in medicine for a long time. Neuroscience vs Psychology vs Sociology vs Genetics. We’re just now starting to put bits and pieces together to integrate some of those sciences. And believe me when I say that some researchers and doctors are not as helpful or happy about it. It’s a touchy subject, really, in the scientific community, because some of those things—like psychology and sociology—were not considered Science (with a capitol S) for so long.
LOL, I have so many things wrong with me I could write a book! But since my abuse, I have developed Hashimoto’s Thyroiditis and Chronic Fatigue Syndrome, and an addiction to nicotine (that’s a story for another day though?). I would say that yes, the unstable thyroid levels and CFS contribute to my episodes—they certainly make flares harder to deal with. I won’t include my undiagnosed immune problem here because—well, it’s undiagnosed! It may be a genetic thing.
I’ve had several MRIs, mostly to follow the progression of changes due to migraine. Honestly, the test you would need to do here would be a PET scan. It would also need to be compared to a previous scan (which I don’t have). If a study was being done, you would need a sample of people who had both mental illness and fibro, a sample of people who had an only mental illness, and a control sample….and a large enough group of each. That way you could tell where the differences were. It would be an interesting study for a grad student thesis—or a doctoral thesis…But I’m not headed that way! If you know someone who is; I will volunteer for the study. I do have multiple plaques in my brain due to migraines. Not unexpected since I have had them since age 11 or so.
I am a nurse (retired), so I know a little bit about research and the sciences. Also, I am also a Reiki master, I’ve had acupuncture, I can help with answers about what I do for migraine relief, and I am currently studying herbal medicine (on my own). I do know a lot about drug-herbal interactions and what not to take with them. Please know that I am here for anyone who has suffered the trauma of domestic violence and needs someone to talk to. Or someone who is in that situation currently and needs someone SAFE to talk to. I’m not a counselor, the SAFE website, or affiliated with anything like that—so if someone needs my information privately (and I am very private) I am here to help in any way I can. I couldn’t get into a shelter when I left, and I was left with only the clothes on my back. Anyway…long story…maybe for another day…just know that I am here to help: for depression, for abuse, for fibro, for migraines, for anything. I was also adopted—so if there are adoptees out there wondering what the heck to do about finding out stuff; I’m your girl.
Have you ever looked at a list of Fibromyalgia symptoms? Looking at these two websites you will see both anxiety and depression listed as symptoms. Here are two reputable websites as proof: Chronic Illness and Chronic Woman
In fact, it seems that fibromyalgia symptoms and mental health are very much linked together. One could say that fibromyalgia is like a spider web, with so many facets (co-morbid conditions) moving out from the center.
Part of Our mission is to ask questions about fibromyalgia symptoms and mental health. This series is to showcase the connection between fibromyalgia symptoms and mental health. Is mental illness, in part, a cause of fibromyalgia? I wonder.
In part 1 of Fibromyalgia & Mental Health, I told you my story read that here. Now, I would like to introduce you to Cathy. She is 20 years old and is fibromyalgia and mental health warrior. I think you will be able to relate to her story and find comfort in her advice.
I had been back and forth to my doctor’s practice with various different symptoms for many years prior to my diagnosis. As a young teenager, I never knew why I was struggling so much and why I had so many different health issues. High school education, college education, and my social life have been affected due to my health since I was 13 years old.
It was when my mum, who has Fibromyalgia, had mentioned to me that the problems I was having were similar to her symptoms. Then I started to think that the illness had been passed onto me.
The first time I spoke about FM at a doctor’s appointment, I was told ‘Oh no, you don’t want that. There was not much more was said about it. I had a blood test and the results came back ok. I was told that it would show up there if I had FM. (later on in life, I found out this was not true).
It took me around 5 years give or take, to be diagnosed. At this point I was telling people I already had FM because I knew as my health worsened, that is what I have.
So at the start of 2018, I made a doctor’s appointment again with my GP, solely to ask him to refer me to a rheumatologist. (As a friend with FM said that is who had diagnosed her). At the appointment, I had to keep reminding the doctor that I was there to be referred to see a rheumatologist and I felt I had to pretty much beg to him agreeing to refer me to see one. He wanted me to just go back on anti-depressants and go back to counseling’.
I kept telling him that I am struggling with the pain and had to be off sick from work and after so many years of struggling, I want to know if I do have FM, so I would like to see a rheumatologist.
He kept coming back to the ‘it’s all in your head’ comments and ‘why would you want to be diagnosed with something like that and I ended up being prescribed Fluoxetine in return for being able to see a Rheumatologist.
I never went back to see the same doctor as I didn’t feel comfortable talking to him again. After telling my mum she told me that she saw the same doctor about 30 years before and he was pretty much the same as her.
I got a letter in the post with my rheumatology appointment which was 5 months away.
The rheumatologist asked me questions about my symptoms and my history. He said that since my mum also has been diagnosed, it had been passed on to me.
After about 15 minutes, he did some physical examinations and turned to me and said ‘Well, you definitely have Fibromyalgia’.
He spoke to me about treatment and he told me that most medication will only reduce pain by about 50 percent if it does at all. I told him I understand that there is not a lot that can be done and he also told me that I do not need to take Fluoxetine anymore as I said it had only negatively impacted my mental health and not eased any other symptom. He assured me that if I don’t feel comfortable taking medication, I don’t have to.
The rheumatologist was very informative and understanding, even though I had come out of the hospital with a diagnosis of a horrible illness, I felt I finally understood why I was different and why I had been so ill for so long.
Most of my time at the doctor through age 14 until about 18 was due to my mental health. I wasn’t going into high school or barely leaving the house and saw multiple counselors who told me I had depression and social anxiety.
I was given antidepressants at a young age. They only ever gave me Fluoxetine tablets which made me feel numb and did not help with my symptoms. I didn’t feel I had any emotion, each time I took them and didn’t feel that specific medication benefitted me. For some reason, I was never offered anything different other than that same medication and to see a counselor. Even at times when I had said I want to try something different. It made me feel like I was just going down the same path, over and over.
The doctor who had referred me to the rheumatologist had also told me I could only be given SSRI antidepressants which I later also found out wasn’t true as I was given tricyclic ones.
At the age of 18, I had seen a counselor again but as I was now an adult, I could only have 6 sessions and that would be it for the time being. I spent most of my time explaining childhood trauma to her, how I had been abused, and constantly talking to her about how I am not being taken seriously about FM. We spoke about my mental health and my emotions. I told her that every time I tried to talk to somebody about suspecting I have Fibromyalgia, whether with a health professional or not, I was dismissed.
After the 6 sessions, she mentioned that my symptoms with my mental health sound like Borderline Personality Disorder and that she thinks I should push on being diagnosed for FM as she thinks it would help me feel better knowing.
I didn’t know much about BPD at this point, but when I researched the disorder, it felt like everything I had been battling mentally.
In addition, I was never able to have a career in the line of work I had studied for or wanted because it would hurt me and make me ill and flare–up. I have worked in many different types of jobs trying to find something to suit me and recently had to leave an office job due to not feeling well enough to continue.
Keeping active has always been important to me, even if it is just a little bit of exercise but when I flare up, it becomes a vicious cycle of struggling to move and even just leave the house and having to wait until I feel I am capable of trying again.
I felt better mentally after cutting the ties with people who didn’t support me
A real friend would not question if my illness existed.
Quality is better than quantity and if friends cannot support you no matter what then they aren’t really your friends.
I have personally come to the conclusion that this is just who I am and I try my best and do as much as I can and that is all that matters. Little positive thoughts like that can make a huge change.
Trying not to push me into doing too much is definitely something helpful when it comes to flare-ups. In the past, I have forced myself to go out and do things that fit people could do, because I felt pressured or I wanted to feel ‘normal’. That is definitely something that made me unwell and gave me flares. I have worked in jobs before where I have pushed my body and mental health to dangerous lengths instead of just giving myself the rest I needed.
It won’t get better instantly but pacing yourself and knowing when to stop or chill makes a massive difference.
I have struggled with my weight being up and down for years but I do notice that when I am at a healthy weight, I feel I can do more and it takes away a bit of that struggle.
Reducing stress and just taking the time to have a deep breath and release the tension can make me feel a little more positive even if just for a short time.
I try to exercise as much as I can and keep active when I am feeling comfortable and well enough to do so. Eating well can definitely change the way you feel mentally or physically but I understand that it can be a challenge and when I get stuck in a cycle of not exercising or eating well it is very hard for me to get out of it.
Most of the time if I am not eating well it is when I have a flare–up and can’t manage to feed myself a proper meal.
Constantly feeling exhausted mentally and not having any motivation can make even simple tasks seem so daunting.
Symptoms of BPD affect me also, like not reacting to most things in a manner that would seem ‘normal’ and feeling emotions so intense really messes me up sometimes.
There isn’t much I specifically do to help when I am feeling mentally unwell. I tend to take lots of rest though as if I am feeling mentally unwell, my FM symptoms tend to be heightened. I do notice that talking to somebody who has felt similar or somebody who will listen even if they don’t understand really helps me feel less isolated.
I do believe that if I am battling physical symptoms, my mental symptoms worsen and vice versa. If I have a meltdown and get stressed then the physical pain can get pretty bad. And causes an FM flare-up.
A lot of the time I feel as though I can be feeling low or anxious because of my fibromyalgia. Living every day with an illness can definitely affect you mentally. I have found that many people with FM may also be diagnosed with a form of mental illness also.
I have tried Amitryptline also for fibromyalgia. The tablets I have for sweating work very well but if they aren’t taken at the same time every day can upset my stomach. Other than that, they have worked amazingly and made me feel so much better about myself. I sometimes do worry about the side effects of medication though.
The meds I have had for fibromyalgia have only been started in the past 6 months and have been low doses. I am waiting for another appointment with my doctor to discuss other treatments as I don’t feel they have made much difference to me.
I have tried CBD oils and vaping CBD which had helped me a lot but unfortunately can be too expensive in the UK to rely on. Also, THC is currently illegal in the UK. So even though consuming cannabis has helped me more than I thought, It isn’t available as medication.
I was in the hospital a few times when I was younger. This was due to mental health and trying to take my own life. As it was years ago, I struggle to remember full details.
I think maybe speaking to a counseller again would benefit me as I like to talk about my issues to somebody but I am not sure how CBT is going to be for me.
I don’t feel as though I will find a method of coping with my health. At the moment, I feel I am just waiting for something to come along that will help me and in the meantime, I am just floating through life.
Mainly due to the fact that the majority of people I have spoken to with FM also struggle with their mental health. Anxiety and depression are a symptom of the illness.
Though I do also believe that my mental health would be better if I didn’t have FM and my physical health would be better if I didn’t have mental health problems.
They both affect my life but I feel coping with one illness would be easier if I didn’t have the other.
I think spreading awareness is a great tool also and social media gives you a platform to do that. You will meet some great people who you can talk to who are going through the same. They can give you tips and suggest things that helped them. Keep yourself open to new ideas.
Remind yourself that it is ok to rest!
Feel free to reach out to Cathy and leave a comment below to show your support.
In my article What You Need To Know About Endometriosis, I give you a background on endometriosis. This article is an interview with a Fibromyalgia Warrior, Jennifer. She answers questions so readers can see what it is like to live with Endometriosis and Fibromyalgia. She will also give you insight into her tips on how she manages her co-morbid conditions.
I was diagnosed with endo in October 2008, but it was not a surprise. My periods began when I was 11, and were extremely heavy and painful. I went on the birth control pill at age 11 due to their fierceness.
Endo: I had a partial hysterectomy in 2017 so I no longer have periods, but since I still have my ovaries, I can feel a very strong cycle and had to resume the birth control pill post-op.
Fibro: Aches and pains in the 18 fibro tender points, as well as referred pain. My wrists hurt when I drive my car a lot of days. I was having severe neck pain, which is gone for the moment (myofascial release/MFR, heat, a scarf, and CBD cream help greatly) and in place, I’m having knee, back, and hip pain. MRF helps those too, and I’m about to do another round of PT, which I respond well to. The stronger I am, the better I feel. Once upon a time, I could do a killer yoga headstand!
When my postpartum menstrual cycles returned, when my second/final child was nine months old, they were heavy and long. I tried many forms of birth control, with the hope of either calming or stopping them. After over a year of trying, my OBGYN suggested that I had adenomyosis, which is endo on the uterus. The only way to be 100% sure, and also to treat it, is to perform a partial hysterectomy. I went into my surgery feeling that it was the right decision either way. Adenomyosis was indeed found.
Terribly, unfortunately, my bladder was injured during my hysterectomy. I’d never been prone to UTIs but am now. I’ve had many UTIs and bladder issues since my surgery. Even without my period flowing, I’m prone to pelvic pain. A cystoscopy to check on my bladder about 8 months post-op sent my pelvic and referred pain soaring. Soon after the cystoscopy showed a “healthy” bladder, I was diagnosed with fibro.
My pain doctor says to think of my fibro onset as my nervous system malfunctioning due to all the trauma. Also, people who have had any and/or all of the following are more prone to fibro (plus I’ve always had a high fight or flight response, which I found helpful, until fibro…): TMJ (I used to wear a bite guard and still wake some mornings with headaches from teeth grinding); migraines (mine are mostly hormonal; I get them a few times a year, no aura};
IC {that diagnosis is a result of the injury to my bladder. I didn’t have IC symptoms before, and thankfully mine is currently regular}; endo (yes, and both sides of my family have or had heavy periods so I was likely to have them; I have two daughters and am armed with so many women’s health knowledge to help them if they need it}; IBS {mild]. So I have experienced, to varying degrees, all the maladies she listed…
-Sometimes OTC Prelief before coffee or a meal that might trigger me. Helps me a ton. I need coffee in the morning to combat my meds so I can drive my daughters to school.
I had anemia at the onset of my period and in my teens. Sometime in my 20s, my period lightened. I also dealt with anemia while trying to stop my period pre-hysterectomy. Taking iron helped though, a week of PMS and then a week of a heavy period, which was exhausting. In my 20s and 30s, I began only having a heavy cycle every other month. I generally found that the right birth control pill helped my symptoms.
Seek the right doctors; it’s OK to doctor shop! Do your research, but don’t just rely on “Doctor Google.” Find in-person and online support. Re fibro: there is always a new medicine, study, or supplement to consider, and another round of PT or a wellness group to do or join (I’m going to join a year-long wellness group in Feb/March through my pain doctor’s hospital that has PT, OT, an MSW, group meetings, and pain management). We are #fibrowarriors and there is hope.
Find an OBGYN you’re very comfortable with and who understands how difficult your periods are. Experiment until you’re on the right birth control if that’s the option you choose to help you. Being on it has never felt like a choice for me. Also, fertility issues are unfortunately so common, and there is no shame.
