A detailed guide to Chronic Fatigue Syndrome (CFS), including its symptoms, causes, and effective treatment strategies to improve energy and well-being.
Mom Guilt (Dad Guilt), we all have had it at one time or another. I know this because we can’t all be perfect, so sometimes we are going to mess up or disappoint our kids. Even the healthiest of moms (dads) is going to have some mom (dad) guilt over her (his) inadequacies. However, having a chronic illness like Fibromyalgia and being a mom (dad) comes with its own set of “mom (dad) guilt feelings”. I am going to tell you what I feel guilty about and what I do to feel better.
If you haven’t read my About Me page yet, you can click link, but let me tell you a little about me. I have three children age 22, 17 and 9. I have been a mom since I was 21 years old (so pretty much my whole adult life). This is important to know because I feel I was a horrible mother at first. Like all of us, I had no idea what I was doing. I thought I was ready for my daughter, but I don’t think I was. To make matters worse, I was struggling on and off with depression and anxiety. I was diagnosed with Fibromyalgia in 2014 and that is when motherhood got a little more complicated for me.
I often feel like I’m not good enough. This might be different for everyone, but I have a feeling many will relate to my list.
Not being able to do activities that my child wants me to do.This is a hard one to deal with emotionally because mentally I know I want to be active with my son. There have been times when he wants to go somewhere and I just cannot do it or he wants to play a game that I’m too exhausted to play. These are the times I feel like “not enough”.
Not spending enough one on one time with my kids. This guilt feeling is not only due to my Fibromyalgia, but the fact that I have been working full time and attending school part time for the last six years. If I wasn’t at work, I was at school or at the table doing homework. This has been hard on everyone in the family and a huge weight I bear. In fact, this one alone could be its own blog post (maybe later).
Not serving healthy meals. There have been so many nights where I am just too tired to cook or even eat anything for myself. So, I will make something quick like Top Ramen noodles or a hot dog. This makes me feel guilty because there are no vegetables and it isn’t the healthiest. I made a mistake when raising my kids (I can admit it). I allowed them to be picky and never forced them to eat what they didn’t want to. So now my 9 year old pretty much hates all food that is good for him.
Now, you know why and how I feel guilty as a mom, let me tell you how to get over it or at least not let it eat you alive. This part is important because whether you are sick or not, you are going to make mistakes as a parent. The only thing you can do is own it, pick yourself up and learn from it.
Ask yourself if there is anything you can do to fix it or make it better. I brainstorm ideas on things we can do instead or on a different (better health) day. If I can I bring this up to my son, only if my idea is something we can do right then. I have learned to not promise too much in the way of commitments. Really, if I can’t physically do something right now, why do I think I can do it later at an unknown date?
If there is something you can do, then try to do it. If there isn’t (like genetics) then you have to let it go! I know easier said than done. One way I use to let go of things I cannot control is by meditating. While meditating I visualize what I need to let go of and when I breath out I let it go out with my breath.
Forgive yourself. This is an important step in letting the guilt go. You are not going to be perfect, but guess what? Your kids are going to love you anyway. They may even begin to understand you as they get older.
I have learned so much being a parent for 22 years. I have learned that although it is important to plan, one must be ready to improvise. Also, parenting is probably THE hardest job on the planet and it is one that you have to learn while on the job. The most important point to remember is to learn from your mistakes, grow from your mistakes and love yourself no matter what.
If you are a person with a chronic illness and you are a parent, you deserve more slack. Whether anyone else is going to give it to you is unknown, however you can give it to yourself. The challenges you face everyday just to get through your day are commendable. Add being a parent to that day and let’s face it- you are a Rock Star! There is no reason why you cannot still learn, grow and love – you just might take a little longer or go a different route than others.
If you found this article helpful, please comment below. If you know someone that needs to hear this message please share this article. Please subscribe below so you don’t miss the next segment in our “Parenting with a chronic illness series”. We will be talking about ways to entertain your child while in a flare.
Do you succumb to the thought process of New Year, New You? I do not, and I will tell you why. First of all, having a chronic pain illness often limits my mobility. Really, the term “new you” sounds awesome, but is unrealistic for someone with an incurable condition. Do I really want to set myself up for failure? I don’t think so. However, there are so many ways to get some exercise in your day. I’m going to give you my 4 ways to exercise while chronically ill. I want to motivate you and myself to keep moving (not to lose weight ~ although that wouldn’t hurt lol).
I have been overweight for about twenty years; the doctor even gave me the diagnosis of “obese”. At any rate, going back even further I never really have enjoyed exercise or had much willpower. The only big physical challenge I have ever done was walked a half marathon in my 30’s. This was a huge accomplishment and I actually lost 20 pounds doing this. Sadly, I also developed bursitis in my hips which is very painful.
I was about 40 when I was diagnosed with Fibromyalgia and arthritis in my lower back and hips. The combination of all this has made it very difficult for me to lose weight, exercise and just generally be active. The ironic part of this story is that all the Rheumatologists I have seen “encourage” me to be active. I was even told, “Your pain is not dangerous! You are going to be in pain on the couch just as much as going for a walk.” Yes, doctors are very sympathetic to Fibromyalgia as you can see.
Reasons to exercise seem self-explanatory right? It is good for your body and your mind, we all know that. However, these reasons are the same for Fibromyalgia patients as well. In fact, The National Fibromyalgia and Chronic Pain Association (NFCPA) explains how not moving our muscles can cause atrophy and de-conditioning. When this happens, it causes us more pain and puts us in an endless cycle when we do finally move.
Furthermore, NFCPA informs us about The Oregon Health and Science University Fibromyalgia Research Center. They have been researching Fibromyalgia for the past 25 years and advocate movement for Fibro patients. Better yet, they don’t just advocate exercise but they develop exercises that are gentle and appropriate for patients with Fibromyalgia.
Again, the benefits of exercise seem obvious. However, the benefits are especially great for Fibromyalgia patients. WebMd explains the many benefits, here are just a few:
I want to point out that these are not cures but if done consistently can make an impact on your symptoms.
I have to admit, exercise is an area I need to work on. Not just physically but mentally as well. Now, if my doctor would have presented exercise in a different way to me, I would have been more perceptive to the idea. Making me feel like I need to exercise and ignore my pain will make any Fibro patient get a little defensive.
There are many exercises that you can do that are helpful with muscle pain and stiffness. None of these for me, are easy but I have to admit when I do them I feel a little better (sometimes). Let’s talk about some ideas to get us moving.
This is the first that comes to mind, because it involves gentle stretching. There are so many different types of Yoga, which we will save for another post. Nonetheless, the most Important part is just that you are doing something. The poses I do when practicing Yoga are:
My recommendation is to pick one and do it for a few seconds, as you become comfortable with the poses increase the hold and amount of poses you do. Even if you just do one pose for 30 seconds a day, this is a great start.
This is one that I really wish I could do, yet I do not have access to a pool. Doing exercise in the pool is so helpful when you have stiff and painful joints. There are so many things you can do in a pool.
I want to share this challenge with my readers! I am hoping to keep myself accountable and have some fun with others (virtually of course). The point of this challenge is to get yourself moving in whatever way you can and feel comfortable doing. Start small and work up to more as you feel you can.
If you are interested in joining me, you can comment below with your twitter handle. I will do a weekly check-in on twitter where we can all discuss how we did and encourage each other to keep going.
Remember the goal is to just get moving, try not to judge yourself on weight or how much or how little your body is able to move. Lastly, this is not a competition! Only encouraging and positive comments will be allowed. Try not to compare yourself to anyone else, as your chronic illness may be different than theirs. Lastly, don’t forget to have fun and maybe make some new friends and a supportsystem you never knew was there.If you are wanting to make changes with your exercise or nutrition, I can help as a certified health coach!
In my article What You Need To Know About Endometriosis, I give you a background on endometriosis. Click the link to learn more about what the condition is. 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!
Also, fibro fog, fatigue and sleep difficulties.
IC: If I don’t drink enough water I feel IC pain (vaginal/pelvic pain).
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 malfunctioned due to all the trauma. Also, that 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 much 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 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.
Have you ever looked at a list of Fibromyalgiasymptoms? Looking at these two websites you will see both anxiety and depression listed as symptoms. Here are two reputable websites as proof: WebMD and NFMCPA
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, 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 doctors 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 has 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 doctors 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 doctors 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 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 for 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 with 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, that 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 doctors through age 14 until about 18 were due to my mental health. I wasn’t going into high school or barely leaving the house and saw multiple counsellers who told me I had depression and social anxiety.
I was give 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 counseller. 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 anti depressants which I later also found out wasn’t true as I was given tricyclic ones.
At the age of 18, I had seen a counseller 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, wether 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 myself 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.
Struggling with anxiety and depression affects me just as much as FM.
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, that my mental symptoms worsen and vise versa. If I have a meltdown and get stressed then the physical pain can get pretty bad. And causes a FM flare up.
A lot of the time I feel as though I can be feeling low or anxious because of my fibromyalgia. Living everyday 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 in myself. I sometimes do worry about side affects 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 treatment 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 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 spoke 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 idea’s.
Remind yourself that it is ok to rest!
Feel free to reach out to Cathy and leave a comment below to show your support.
I had the great pleasure of meeting Amanda from Imagine Life Therapy on Instagram. As you all know, my subject matter has been focusing on mental health and how it affects our chronic illness. You can go back and read the start of the series called Fibromyalgia & Mental Health. So, I was wondering how emotional therapy could benefit fibromyalgia, if at all. I am so excited to share this interview with you. I hope that it helps you as much as it helped me.
I graduated from Central Michigan University with a Bachelor of Science in Psychology in 2009. I went on to graduate from the University of Michigan in 2013 with a Master of Social Work degree. I became a School Social Worker for 3 years working mainly with students with emotional and behavioral disabilities. Throughout this process, I became diagnosed with several autoimmune diseases. This not only changed my life, it changed my perspective. I learned first hand that there are few supports to help emotionally cope with this major life change. After 3 years of struggling I took my wellness into my own hands through research and finding ways to not only manage my disease outside of the doctor’s office, but to ultimately create a life for myself I could still be happy and fulfilled by. Having been successful in doing this and reflecting on my purpose, I made it my mission to help others experiencing the same difficulties.
In my Practice I provide a validating space for people with chronic illness to make sense of their experience. I help them work toward effective disease management, process the difficult emotions that come up and learn skills and tools to help them be successful living life with chronic illness.
I started my practice in 2017 – The idea came from my own personal struggle finding a therapist’s support when I was trying to navigate my first job after my diagnoses. I couldn’t find a therapist who I felt really understood what I was going through or that could offer me tangible skills or tools for managing my illness and figuring out how to integrate it into my life.
I work with a variety of modalities depending on what I feel would be most helpful for the client. I strongly believe in Cognitive Behavior Therapy, as it heavily supported by research to be helpful for managing chronic illness and chronic pain. I also incorporate Mindfulness, Ecotherapy, encourage creative expression, Exposure Therapy where necessary (a type of CBT), Solutions Focused Therapy and Narrative Therapy techniques.
We essentially create a plan of action to address the concerns that the client views as most distressing and work from there. Some major areas of interest are typically stress management, grief/loss specific to chronic pain/ illness, communication, problem solving, relationships and symptom management or overall disease management.
Therapy can help through creating a plan unique to the person’s concerns (because these look different for everyone) as well as just having a supportive space to talk about and process everything that has happened, is happening and will happen. They can build skills for symptom management, get resources and problem solve with a professional as things come up for them in real time. Therapists can also help with pain management, relationship difficulties that arise inevitably from the added stress and lifestyle changes required after diagnosis and put together a stress management plan to help reduce added distress. Seeing a therapist does NOT mean or support the belief that fibromyalgia is ‘all in your head’, in fact, it can be empowering and help you regain control over something that feels so uncontrollable at times.
In my area finding a therapist that takes new patients and my insurance is nearly impossible. In addition, finding one that also has experience helping people with a chronicillness like fibromyalgia is even more of a challenge. Therefore, can you recommend techniques that a person can use on their own?
This is a challenge regardless of specialty, mainly because therapy is undervalued and therapists are underpaid by insurance companies. This is a whole other issue, but it trickles down to the client. There ARE more and more therapists specializing in this area though, and I think the need is becoming more and more visible. Most therapists I know who specialize in this area, do so because they have a chronic illness themselves. We are very good at referring to each other around the country where we can because we understand the need for clients to feel supported by someone who understands this unique struggle.
I recommend searching on Psychology Today in your area and looking under the therapists specialty areas to make sure they specialize in chronic illness. In regards to insurance, there is a great resource called Open Path Collective that is a national lifetime sliding scale program where you can find a therapist for the rate of 30-60$. You pay a one-time fee and belong to it for LIFE so if you ever move and have to switch therapists, you can jump right back on there and find someone who will honor the same fee.
For those looking to find a therapist, what questions do you recommend asking to find the “right fit”?
First, ask your self, ‘What do I want the focus of therapy to be for me?’ Usually therapists offer a free 15 minute consultation via phone or video, which is a great way to get to know if they are a good fit. During the consultation, they may ask you what your top 3 concerns are, and these can become your goals to work on in therapy.
You can also ask if they have previous experience supporting clients living with a chronic illness, and what their approach for this population of clients typically is (if that is what you want the focus of your therapeutic work to be on).
Also be aware that for us, it is unethical to ask for or elicit testimonials or reviews from past clients, so if a therapist doesn’t have a lot of ‘reviews’ online, this is why. It is not necessarily a reflection of their ability or work.
Absolutely. One of the things I educate my clients about is the fact that Depression is the number 1 co diagnosed condition with ANY chronic illness. I also let them know that both anxiety and depression can be a part of their symptom cycle and a result of the circumstance of living with a chronic illness. I also see a LOT of trauma related to medical experiences and stigma, which can result in PTSD or anxiety relating to medical situations or events and navigating society with a visible or invisible disability. This area doesn’t get a lot of mainstream attention, but it’s more common than you’d think in the chronic illness community.
I speak at local support groups for all sorts of chronic illness populations and am always happy to speak or present if I’m available. I’m located in the state of Florida and offer telehealth or virtual sessions, which is a great convenience for people whose conditions fluctuate unexpectedly. I also have an in person office in St. Petersburg, FL and am currently working on an online school filled with courses and tools for people with chronic illness to access anywhere, anytime. I take medicare and private pay and offer superbills for people who have access to out of network reimbursement with their insurance. I also am an Open Path provider and offer sliding scale to a limited number of clients as available.
How many of us fighting fibromyalgia are also fighting endometriosis? What is that like and how do we deal with it? Amanda Pratt LCSW, CPLC, has so graciously answered my questions about her endometriosis and fibromyalgia symptoms. Amanda gives us some amazing advice and tips on dealing with endometriosis symptoms.
Absolutely. I’ve had to completely change my lifestyle, mindset and activity level to accommodate and reduce symptoms. I can’t work a ‘regular’ job due to my need for frequent rest periods. Also, I have a hard time making and keeping friends due to people just not understanding how my illness affects me. I experience pain daily and the fatigue completely cripples me when it comes up unexpectedly.
I suspected I had endometriosis since I was 16 but doctors would either tell me to just deal with it (because there wasn’t any viable treatment options) or they couldn’t do the surgery because I didn’t have access to health insurance. It took 13 years to get an Endo dx.
The Fibro dx happened within a few months of symptom onset (I had access to a great doctor at the time I was in grad school) and the Lupus/RA overlap Dx came a couple years after symptom onset, because doctors were ‘wishy washy’ on whether it was lupus or something else acting like lupus. When I responded to lupus treatments favorably, they made the official dx.
I take Cyclobenzaprine daily, which helps with both my Fibro and Endo and some of my joint pain. I also take prednisone daily or every other day at a low dose and dose higher when I’m in a flare. In addition, I take a DMARD called Minocycline to help with my RA/ Lupus Joint inflammation. I take levothyroxine for my hypthyroidism. I’ve found that if any of these meds are missed, the cascade of everything effecting everything else begins and my functionality declines.
I’ve tested positive for anemia since I was 16 and they always told me ‘you’re just anemic’ – whatever that means – but I do personally feel it is connected to my chronic health conditions – especially my lupus and endometriosis. My platelets also are low and so is my blood pressure, especially in a flare.
I think I was 12? I started having pelvic pain prior to starting my menstrual cycle, but they couldn’t figure out what caused it. Ultimately, I don’t want children so I haven’t encountered fertility problems due to it not being an aspect of my life.
Don’t give up hope – know that the healthcare system is NOT set up for people with chronic health concerns. The louder and more persistent we are about demanding adequate health treatment, the more they will be forced to listen to us and do something about it. There is power in numbers and also power in sharing our stories.
You never want to hear your doctor say, “your brain MRI came back abnormal.” The fear and panic that goes through your body in this moment is 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 macro adenoma. It is interesting that some adenoma’s 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 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, remove 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 with 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 appointment for the results. I had to wait longer. I called the doctor on 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 like 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.
Advocacy
The morale 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!
I have several chronic illnesses and have tried many different treatment options to improve my symptoms for all of them. My illnesses include: fibromyalgia, arthritis, endometriosis, hypopituitarism, pituitary adenoma, irritable bowel syndrome, rashes, restless leg syndrome and I think that is it, but I could be forgetting something. The medications that I have taken for these illnesses have caused me greater side effects than benefits. That is what led me to a holistic doctor and the Whole30 diet. This is my journey and the surprise I didn’t expect from the Whole30 diet.
Like I said above, I have tried many different medications. They caused me severe side effects to the point I could barely function. I have seen doctor after doctor who did nothing but push pills in my face and not listen. As a last resort, I made an appointment with a Holistic doctor and I was pleasantly surprised by this visit. Prior to the visit I filled out several pages of information from my medical background, my family’s medical background and my level of commitment to making changes to live a healthier life.
During the visit we talked about my past traumas and my current symptoms. This doctor recommended many supplements and an elimination diet (Whole30). She explained that it is possible some foods I am eating are causing inflammation and stomach issues. I was ready for anything new at this point so here we go.
Leading up to day 1 I had to prepare my house and my mind. I tried to clean out as much of the stuff I couldn’t eat as I could, but the rest of my family wasn’t doing this with me, so I was going to have to use willpower. I bought the Whole30 book and started reading. I was going to have to give up:
Luckily, the book gave me many ideas on what I could eat including recipes. I’m not really a recipe kind of gal. I like to improvise and make up my own stuff as I go. Therefore, these recipes were just a building block for my own ideas. So, I made a plan (so important) for every meal and went shopping. I told myself “You can do this” and charged through.
Plan 3 meals to take to work to eat every 3 hours. The first week I was so hungry I thought I was going to die. I had horrible headaches and I couldn’t concentrate.
Prep my food ahead of time as much as I can to save me time and ensure that I can eat only the things allowed.
Surprise! Whole food actually tastes good and makes me feel good.
These are just a few of the recipes I made up. There were more but they all usually involved these ingredients. I would also have fruit on the side like strawberries, blueberries, bananas, apples, oranges and grapes.
In the book there are testimonials about how on day 31 when you are able to start re-introducing the foods back in you won’t even want the thing you were craving on day 2. This was so NOT true for me. I craved chocolate every day. I craved bread every day. I wanted all the things my family was eating that I could not have. But, I didn’t give in. I found that since I had a deadline and if I cheated I would have to start day 1 over, it made it easier to push through.
Guess what? I started feeling better! I was less bloated, and my stomach didn’t always hurt. The best part was at the end of the 30 days I had lost 17 pounds! That was with no exercise and just changing the way I was eating. Honestly, if my whole family would get on board I could live this way all the time. You really see how awful some food can make you feel when you go through this elimination diet.
Legumes were the first food I re-introduced as was suggested. I thought for sure I would feel bloated or something the next day, but no. We were good to go to keep eating legumes- yay!
Non-gluten grains were second after two days back on the full diet. Now, this gave me some stomach issues. So, I’m bummed but thinking maybe I just ate too much in one day. I had gluten-free oatmeal and rice for lunch and spaghetti for dinner.
Diary is next after I took an extra day to recover from the non-gluten grains. Now, you need to know how much I love cheese. This was a very hard item to give up, so I was super stoked to be eating cheese on this day. My heart was broken when I ended up in the bathroom many times the next day. Cheese is out if I want to feel good.
Grains was the last to be brought back in. I was also excited about this one because I love my grains. For lunch, I had an open-faced rye sandwich with my usual toppings from above and I cannot remember what I had for dinner. However, it doesn’t matter because again I spent much time in the bathroom the next day. So now grains are out.
After it was all over, I really didn’t know what to do. My doctor didn’t really give much direction in this regard and pretty much told me to follow the book. The book makes it sound like this is the way you should live from here on out. So, for the last month, I have been doing some testing. I have been pushing my limits to see what bothers me and how much of it bothers me. I have tried cheese on several occasions and it seems possibly a small amount will be ok. I also, have added sourdough bread which seems to have no issues, but I am limiting it.
I have to say losing the weight gives me motivation to stay on this crazy diet. I have learned that planning makes all the difference. Especially, when I’m not feeling well if I already have something prepped it makes it so much easier to eat healthy while sick. I know this isn’t for everyone, but I do encourage you to give it a try. You never know what surprises are in store for you.
Next, I will doing another elimination diet and including night shades. These are tomatoes, potatoes, peppers, eggplant etc. Not eating potatoes is going to be a challenge as they have been a staple for me for months now. However, I love sweet potatoes and they are not included in the night shade family! The purpose of this is to hopefully really start focusing on my inflammation and hopefully reducing it. Stay tuned for those results.
Since allowing myself to reach out to others almost a year ago, I have found my community. I have found my people, my tribe! I didn’t know that I needed these people in my life until they appeared. Sadly, I had closed myself off by denying my illness was a part of me. So, I write this to you today for several reasons. One is for the people who haven’t allowed others in to their hearts. The other is to recognize and thank those that are now part of my heart. If you don’t know already, here is how I found importance in the chronic illness community.
I have met so many supportive friends through the blogging world and the chronic illness community. How did I meet them? Well, one of the things that isn’t talked about much is that you HAVE to network when you start a blog. You have to follow other bloggers on social media and their blogs. This is important to not only make friends but to learn from others. There is always someone else who knows just a little more (or a lot more) than you. It benefits you to befriend bloggers for support and knowledge. I’m sorry to say, but it is rare that you are going to launch your blog and have immediate success without sharing your blog and returning the favor to other bloggers. I quite enjoy reading other bloggers articles and looking at their websites. It gives me motivation and sometimes ideas I hadn’t thought of.
If blogging isn’t something you want to do, then putting yourself out there on social media is the next best thing. Of course, you need to be careful as there are predators out there and they seem to prey on women and especially those with a chronic illness. That being said, I have met the most wonderful women on social media (some men too). These people are going through exactly what I’m going through or sadly worse. They give me strength when I don’t think I have any left. Just when I’m feeling down and sorry for myself someone will post something uplifting to remind me to keep going. I treasure the chronic illness community with all my heart (you all know who you are). Honestly, there are so many I fear accidentally leaving someone out.
When I first started blogging I saw bloggers say they were nominated for awards like the Sunshine Blogger Award, The Versatile Blogger Award. I soon learned that these awards were given by other bloggers. It is a fun way for us to get to know each other and recognize our work. I think I have been recognized for all of them now, although I haven’t written a post for each one as I have been too sick to focus on my blog.
This last month, I learned of an organization called WEGO Health. This is an organization that you can become a member and network with other people and organizations as a patient leader providing advocacy for your community. What is a Patient Leader? A patient leader is an advocate, who knows what it takes to navigate the healthcare system. It is also an influencer who is able to reach people in a community online. Lastly, a patient leader is an expert, who is a business professional who understands things from a patient perspective. Becoming a member of WEGO Health allows you to network with other industry leaders. So, if you are looking to up your advocacy game, this is the place to do it.
When I learned about WEGO Health I immediately put earning this award on my bucket list. I know that I am very new to the advocacy world, but it doesn’t mean my heart is any less involved. Since I was young, I always wanted to do something to change the world. This feeling is in my blood and drives my goals today. I started this 6 years ago when I went back to college to work on my psychology degree. At 44 years old my true desire is still to become a psychologist and study human behavior. However, my body has other plans for me. Don’t get me wrong, I am still working towards that goal, but I may have to take another detour.
I have been nominated for the Best Kept Secret and Best in Show Blog awards. I do not know who nominated me, but I suspect. However, it means the world to me and it has pushed me to keep going with my advocacy efforts. It is not easy to keep going when you fight fibromyalgia on a daily basis, work full time, and in addition work towards a degree while building a blog and business. Like I said earlier though, my community pushes me forward. They give me the energy and support I need to get back up.
I would truly appreciate support from the chronic illness community now by endorsing both my nominations at the link below. Earning this award from my community and my readers is just the incentive I need to take myself to the next level and truly make a difference in the world.
You can make a difference in the chronic illness community as well! If you haven’t subscribed to my blog yet, please do so below so you can see when there are opportunities to help your community. I also encourage all to visit International Support Fibromyalgia Network as they not only have resources but provide advocacy opportunities as well. Gentle Hugs to all my fellow Chronic Illness Warriors!
My husband and I have been coming to San Diego Comic Con for years. Sometimes he goes without me, but I believe it’s been about 15 years. He is an art collector and recently began writing comic books as well. He is well known and really this is more like a side business for him than a hobby. It seems every year I say I’m not coming back because it is so hard on my health, yet I end up going again. This is my story on Comic-Con and Fibromyalgia and how to balance both.
Comic-Con International is just what it sounds like. It is a comic book convention that is held throughout the world. The convention started 50 years ago and was more comic book centered. As Hollywood entered the scene, Comic-Con expanded to movies and television. The convention now has something for everyone and has grown to such massive popularity that it is very hard to even get a ticket sometimes. If you have ever seen the Big Bang Theory episode where they are trying to get tickets, then you know. My husband used to have several computers lined up to try to get in.
There are many things that keep me going back to Comic-Con each year. It is a lot of fun to be so close to celebrities that you admire. There are signings you can attend (if you are lucky and get into the lottery). I enjoy attending panels where you get a look at upcoming episodes and hear first-hand where the show is going. Unexpectedly, I also love talking with the comic book artists. Over the years my husband and I have had awesome experiences with artists. Although, I am not into comic books it is always nice to meet kind people.
They allow too many people to attend Comic-Con. This makes it hard to even get from one place to another. The lotteries they hold are supposed to make things more even, yet some people get nothing, and others get several things. Sadly, I think that Comic-Con has outgrown San Diego and it really needs another location that better fits its growth.
I have attended Comic-Con while having Fibromyalgia before, so I knew how hard it could be. I recommend getting parking under the convention center. This is also only on sale during a lottery. However, two years in a row we have purchased parking on EBAY. Parking under the convention center allows for easier access when you need to go and rest from all the people.
This year, I brought a walker, which was the best decision I ever made. The walker was hard to navigate in the crowds sometimes. However, it really came in handy more than it didn’t. I was able to sit down so much more often, which meant less trips back to the car. Since I had a place to sit, we were able to get into panels we might not have gotten into without the walking aid. In addition, my walker had a storage bin. This meant I didn’t have to lug around a heavy backpack.
The first thing you should do when you get there is go to disability services between A and B. Here you will get a sticker put on your badge and you can have one person as your attendant. If you have questions always ask. For some reason they don’t seem to willingly give out information, but they will if you ask a specific question. An example of this is that ADA can get into the convention center through door B2.
They put out a pdf of the program guide and exhibitors a few days before the convention. Looking through these and planning things out will really help.
Have an outline, but don’t have a set plan. I say this because you never know for sure if you will get to do something or not. So, you have to have a plan B and C and be ok with whatever happens.
If you want to get into Hall H (this is where all the really popular panels will be) then you either need to stay till 9:30pm or show up before 7:30am. This is when they hand out wristbands and also goes for ADA line.
If you need to a place to sit down or rent a mobility aid, then disability services is the place for that.
Bring your pain medications and pain creams, you will need those.
Prepare healthy snacks so you won’t be tempted to buy the junk they serve there. Although, I did splurge once on a pretzel.
If you have anxiety like I do, breathing exercises really helped me so much. Breathe in counting to 4, hold for count of 2, breathe out for a count of 6, repeat.
Again, you have to ask questions. So, always ask if there is an ADA line for something you want to do. There may be one and it won’t be advertised.
If you are flying into the convention, or don’t have room in your car there is a FedEx service on location. This is very handy because you will be buying many things. In addition, you can also check your bags for a small fee. This will allow you to enjoy yourself without having to carry all your purchases all day.
Even if you don’t have a chronic illness like Fibromyalgia, self-care is a must while attending Comic-Con. The reason I say this is because the con is 4 ½ days of early and long days. There is so much to do there from anime to video games. Not to mention, the convention has spread all throughout the area. There are things to do for miles and some things you don’t even have to have a badge for.
Proper nutrition: You are on vacation and you know your body, but I suggest staying as close to your normal diet as possible. I have IBS and it can have devastating effects on my stomach to consume things that bother me. I did this by bringing my own snacks.
Hot-Tub or bath: Using the hotel hot tub or just taking a relaxing bath can do wonders for your body. You are walking probably more than you are used to and pushing your body. So, bring your swimsuit.
Yoga: Every morning and evening I would do a few yoga poses to help loosen my muscles. I even do stretches in the shower with the hot water hitting me. Afterward, I apply CBD pain cream (linking to the cream I use). This really helps keep the pain down.
Routine: It can be a challenge to keep up your nightly or morning routine when on vacation. However, I think you will find if you keep your routine as close as possible you will find it relaxing.
These are all the tips I can give you to have a good time at Comic-Con while trying to balance a chronic illness like fibromyalgia. For me and I’m sure for many fibromyalgia warriors out there, it is hard to predict how your body is going to handle an event like this. Almost every day I woke up feeling like I wasn’t sure how I was going to make it through. With the tips above I did make it and I even had fun. I had some hard times, but overall, I managed to go with the flow a little more than I usually do, and it was fun.
