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.
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 gyn (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—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 death.
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? I started 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. 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, 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 to 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 in to 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 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 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 the 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, that 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, and 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 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 in 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 like a switch to turn on predispositions in genes.
Nothing in our bodies are 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 it’s 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 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 what. 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 had a doctor not listen to your concerns about your health? Has a doctor ever dismissed your symptoms for your existing condition, only to find out later they were unrelated? Have you ever had a doctor treat you like your illness wasn’t as bad as you were claiming it to be, especially fibromyalgia? Well, if you answered yes to any of these questions you will definitely relate to this article on fibromyalgia and doctors. Here is my open letter to my ex-doctors that I want to send, but won’t.
Dear Dr. T. I am writing to let you know how my health has turned out since we last saw each other. I went through so much pain and agony emotionally and physically that wasn’t needed. Remember how you thought my restless leg syndrome was a side effect of the Cymbalta? Not to mention, the symptoms of my severe fatigue and my inability to get any sleep? Well, it turns out that I had a severe case of anemia. This could have been detected if you would have just run a couple more tests. My Ferritin level was a 4! (This basically means the iron was not binding to my blood.) To correct this issue I was given an IV solution of Iron and have been doing pretty well on that front for a few months. However, this is something that needs continuous monitoring.
Maybe you can recall, that when you wanted me to go back to work I cried? I told you how I was barely functioning and how severe the side effects of the Cymbalta were. You told me that you understood but there was nothing you could do for me. You advised me to find another doctor. I felt your actions were telling me that you didn’t believe me. You told me to stop telling myself that “I couldn’t do things” and start telling myself “, I could do things” with no care to my real medical condition that I had no control over.
I need you to know that by this point, I am almost broken not just physically but emotionally. I see a couple more doctors that treat me equally as bad. I am now afraid to see doctors, a fear I never had before. I often wonder when it gets bad if it is in my head or real. It sure feels real. I didn’t expect you to be an expert in fibromyalgia. I expected you to take my concerns seriously and maybe take some time to do some research.
Dear Dr E and Dr C. I am writing to you because you both aided in my fear of doctors. I was dismissed by both of you! Although, Dr E was thorough in the beginning by sending me to other specialists and taking multiple x-rays and MRIs. After that, you treated me like I was bothering you with my fibromyalgia symptoms. Both of you, lumped all your fibromyalgia patients into one group. You treated us all like we were the same. I’m not an expert on fibromyalgia but I do know that we each experience different severity levels of symptoms. Yes, I have found that my diet and exercise levels directly affect my fibromyalgia symptoms. However, I am still in a constant flare! Do you hear that? After a year of suffering, I am still in a non-stop flare!
I feel like I have moments where I feel like I’m coming out of it, only to be pulled back in again. What I expected from you both is understanding, not condescending behavior. I was told by you “we advise all our fibromyalgia patients to remain active and that is why we feel they can work a full-time job.”
Since going back to work, I have missed many days because of my illness and doctors appointments. My productivity has gone down because I find it very difficult to concentrate. I am often late to work because it can be a challenge to get myself ready in the morning. I just wish you both would have listened to me and had taken what I was saying seriously and helped me work towards a solution. Instead, you left me to flounder alone.
You may or may not care that I am picking myself up. After being turned away from a doctor for my case being too complicated, I have found a new primary care doctor. He seems to be someone that wants to work with me towards my health. I let him know up front how I have been traumatized. I also advocated for myself by telling him that I would listen to what he had to say but I expected him to listen to me as well. After all, I am the one living with this condition, therefore having the most experience between the two of us.
Thank you for teaching me the hard way how to advocate for myself. I hope that you can consider my story the next time you lump all fibromyalgia patients into one group.
I share this with my readers for several reasons. The biggest reason is that sadly, I know I’m not alone in this feeling and reading this may give you comfort (you are not crazy). Next, I want those that don’t have fibromyalgia to know that each one of us is different. I want you to know that we are being treated as if our illness produces the same “amount” of pain in everyone. This is NOT true! Lastly, I really needed to get this out of my head, so in part this is therapeutic for me.
Healthcare needs to change. I urge you to contact your local representatives and tell them your story. If you are able to attend Support Fibro is hosting Advocacy Day in Washington DC, September 18 & 19, 2019. Follow the attached link to get more information. Please share with us in the comments if you do either of these advocacy items.
There is hope! I know there are good doctors out there (at least I have heard the stories). I urge you to keep looking and don’t be afraid to fire the bad ones. Also, I urge you to find a health coach! A health coach can bridge that gap between the doctor and you. I recently became a certified health coach and I am excited to offer my services to my chronic illness community. My passion lies in helping others like me go from “my doctor said to improve my condition I need to change my diet and exercise, but I don’t know how” to “my health coach helped guide me to healthy changes and I’m starting to feel better.”
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.
Meet Hilary Neumann! She has lived with Fibromyalgia and several other diagnoses for many years. In the video below she tells her story of how she handles living with fibromyalgia. Her strength and determination to live her best life has shown me how to power through when living with a fibromyalgia diagnosis. Listen to her story below:
Hilary has lived with fibromyalgia for twenty years and has tried many different treatments. Today, she is trying “outside the box” treatments like aqua-therapy and massage. However, these treatments are not covered under her insurance. It is important that fibromyalgia patients have treatments that are accessible, not just available. This is why it is so important that we continue to let our legislators know how fibromyalgia affects us daily.
Hilary’s story is one I’m sure many of you can relate to. She lived with fibromyalgia for twenty years without an actual diagnosis. She sought out treatments. Really, trying anything she could to take control over her symptoms. All the while, living her life and raising her kids. The strength I saw in her while telling her story was very inspiring.
“I’m suffering from a silent disease. I hurt everyday. I hurt from head to toe. My brain fog, is actually my brain hurting.”
Hilary’s husband is supportive of her illness and just like us is also frustrated by it. It is so important that we have people around us for support. It makes me so happy that Hilary has someone in her corner to help her power through with her fibromyalgia diagnosis.
“I dont’ want to be treated different. I just want you to undertand. Don’t think that I’m lazy, that I can’t do it. I CAN when I feel good.”
Again, I want to thank Hilary for telling us her personal story. Also, for showing us that we can still live our best life, we just have to power through! If you would like to connect with Hilary you can do so through Facebook:
