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Tag Archives: fibromyalgia

Joanna

I don’t exactly know when the little bugger in my head started to grow, but I sure know it caused a lot of troubles for me over the course of at least 5 years. I had been very active from about 2012 – 2016. After going through a messy and traumatic separation from my husband, I realized the best and cheapest therapy for me was going to the gym 4 or 5 days a week. I would do cardio for an hour, strength training for an hour, and sometimes, another round of cardio. I found extreme joy in doing Zumba classes. I would smash the tennis ball for 30 minutes non-stop to get out all of my emotiona pain and anger. I noticed that for all my efforts I wasn’t seeing much change to my body but I honestly was feeling strong and peaceful after working out. It was great…until it wasn’t.

It was as if a switch in my body was flipped overnight, and suddenly I couldn’t keep up in Zumba anymore. I was not able to kick as fast, or jump as high or dance the whole hour without feeling like I was gonna pass out. I had been using 60lb weights, but now quickly declining to 25lbs over the course of a very short time. I couldn’t jog on the treadmill, or speed walk at the steep incline any more. I was slowing down very quickly.

In October of 2016 I told my Dr I wanted to be evaluated for Fibromyalgia, since all of the things I was feeling matched that disease. I was diagnosed with it a few months later, and my body was getting worse so I figured it was just Fibro progressing. But certain things were happening that made me start to wonder if it was something more than that. I noticed that after working out, instead of feeling that euphoria of endorphins from a good sweat session, I would come home and feel like I was in a rage for no legitimate reason. I was angry at everyone, and had a hard time controlling my temper. This was totally not like me. I thought I was going crazy. I thought I had Bipolar. I thought I was becoming my father, who was verbally and physically abusive. I hated him for how he acted. And I started hating myself. I was very scared for the feelings of anger and hatred towards my family. I was worried that I would hurt them somehow physically, and that I wouldn’t be able to stop myself. I was truly terrified of what was happening. And I was too ashamed to share it with anyone, including my counselor because I was afraid she would judge me harshly and think I was a terrible person. I knew something was seriously wrong, and I didn’t know what to do.

I started to research symptoms I was having, both the physiological and the physical. There were so many things that my head was spinning to figure it out, and none of my doctors had an answer for me. I saw a Naturopath who said I was under too much stress, especially since the worst of this started after my dad unexpectedly passed away in 2015. She suggested I try relaxation techniques and also prescribed various supplements, including one to help my “adrenal insufficiency” which she said I had. She told me to go gluten free and dairy free, which I tried to no avail. My PCP told me to lose weight and exercise more. I told him I was already trying to do that. I wasn’t eating junk, and I was limited with what I did at the gym but I was still trying. Nothing was working and I was gaining weight. Overnight it would seem like I put on 5 lbs. I felt like such a failure.

On top of the weight changes I was also having worsening anxiety and depression, and more frequent panic attacks. I used to enjoy going to religious meetings and assemblies, but now I couldn’t handle them unless I took an anti-anxiety medication, or I slathered on my “calming” essential oils before going and for the entire time I was there. I would cringe when someone came over to talk to me, and started to avoid going into the services until right as they started so I could just sit down and not be bothered by anyone. I would sweat and feel flushed all the time, and had to use a personal fan or the A/C whenever we went anywhere. I wore tank-tops in the winter with just a light sweater, and I was still burning hot. And in the summertime it felt like I just got out of the shower because I was always so sweaty and damp. It was miserable!

My Naturopath decided I should have a 24-hour saliva cortisol test done and suggested it several times, but I kept saying no because insurance wouldn’t pay for it, and I wasn’t working so I didn’t have the extra $100 to spend. I put it off for a while, and then finally decided to go for it several months later. In December 2017 I tested my cortisol and found out that my midnight level was high. But the Naturopath never pursued it, and just told me I needed to lower my stress. Not easy to do since I was an unemployed single-mom with worsening health and limited funds. Custodial issues with my ex only added to the stress. I tried more acupuncture, essential oils, calming tea, meditation, yoga, different therapy sessions that my insurance would cover – still nothing helped.

I couldn’t sleep at night, but I didn’t have sleep apnea. I was told to start anti-depressants to help my insomnia. Plus I started to get worsening facial hair, and it was growing on my upper back, so bad that I needed to wax my neck, shoulders and back almost every month. I looked like I was 9 months pregnant too, all in the belly. It was really getting to be embarrassing for me and made my low self esteem even worse.

I finally looked up what could be causing high cortisol, and in January of 2019 I saw “Cushing’s Disease”. Everything fit, everything matched my symptoms. I told my mother I think that was what I had, and she read the list and said “Nah, I don’t think you have that.” She said I wasn’t experiencing some of the symptoms (at least in her opinion) and so it must be something else. I gave up on that idea and thought this was never going to go away. My face was getting rounder, as was my body. And my depression was getting worse because I felt like there was no explanation, and that I would never get better.

A couple of my friends very strongly recommended a diet program they tried, and shamed me for not doing it even though I told them I couldn’t afford it and I was already trying to lose weight and eat right on my own. I hated having my blood pressure taken because it was always super high, and doctors would scold me for not wanting to take medication, even though I told them all the supplements I was on to lower my pressure naturally. And they didn’t believe me when I said it was always a lot lower at home. To everyone, I was lazy, fat, and a liar. And I was starting to believe it myself.

Things were getting worse and worse, and I remember seeing myself in a photo taken just as COVID was starting. It was a family photo right after my daughter was baptized at our assembly and my face looked terrible. I was sick, and looked horrible – but it also looked abnormally full and round. I never looked like this in other pictures. I kept reminding my mother about “moon-face” especially when I saw that photo, and she still said that wasn’t it. I gave up again in finding answers and just thought there was no hope.

Throughout 2020 as my health was getting worse, I figured it was just COVID anxiety, but weight was piling on even faster than before. Clothes that I had just bought no longer fit after only wearing them once or twice. My emotional health was really suffering, and since everything was in lock-down I couldn’t get the acupressure or acupuncture I relied on. No more reflexology or gym. I started getting bad heart palpitations, and my blood pressure was getting worse, but my heart checked out to be ok after having 2 holter monitor tests. I was feeling even more body pains. I thought either Fibromyalgia is kicking my butt again, or maybe I had Multiple Sclerosis. I also wanted to re-check my cortisol levels because I still thought Cushing’s was a possibility.

Thankfully this time, my PCP got me in to a Neurologist, and also ordered a 24-hour urine cortisol test. After seeing the Neurologist and telling him the symptoms I was having, he agreed about getting me checked for M.S. So I went in for an MRI. At the same time, I was getting the urine test done and no surprise, the cortisol was through the roof this time. As I was then being referred to an Endocrinologist, and having even more tests done – I got the news back on the MRI. I thankfully didn’t have Multiple Sclerosis. I had a tumor on my Pituitary gland. I didn’t even think that was causing all of these symptoms. I was in shock.

I was relieved because finally I was getting answers, and finally the doctors were listening to me and helping me. But I was so scared, and so numb from thinking about the tumor in my head. I was sent to a Neurosurgeon, the best in his field where I live. I had a second MRI done to confirm what was seen by accident on the first one, this time more focused on the Pituitary. And again, they saw a tumor. I couldn’t process all of what was happening. Especially because it was during COVID, so all of my appointments I went to alone. I sat in my car and cried each time. I didn’t know how to deal with this. I needed surgery, and was told of the risks involved. I had to wrap my head around all of this, which was really hard to do because while all of this was happening, my daughter was having her own health issues and surgeries, and I had 2 kidney stone surgeries myself. It was truly overwhelming, and very frightening. Honestly, only with my faith in God did I make it through all of this.

I had surgery on October 25, 2021. It was no walk in the park, but according to the doctors I am in remission. I had a horrible recovery after surgery for the first couple of months because my Fibromyalgia flared up. I had a blood clot in my badly bruised arm from all of the needles they poked me with while I was in the hospital. I left the hospital with Diabetes Insipidus, and felt like I constantly had to pee. I had terrible widespread body pain for 2 months while I was in the flare. My nose was stuffy all the time, and I couldn’t taste or smell anything. And because I was on the new medication, and not able to breathe out of my nose, I had horrible cotton mouth. I drank ice cold water and juice all the time, but that didn’t help. Everything I ate made me nauseous. I was absolutely freezing all the time – instead of being hot like usual, now I couldn’t get warm. I needed to use a walker because I was unsteady and exhausted. I took 2 or 3 naps a day and was still tired. I was in a deep deep depression, one that I later learned often happens after surgery to varying degrees. I wish I had known that sooner. I regretted having surgery because it only seemed to be worse than before. And to top it all off – I finally got my period, after more than 3 years of not having one. Seriously?! Now?!

But then rather quickly, something seemed different and I was starting to feel better. My face was changing and getting noticeably smaller, as was my body. I had quickly lost about 15 lbs. I was beginning to taste and smell food again, and it was wonderful – like being reborn. I still have bad days, and I get tired out quickly. I have to use a cane when I walk outside of my home because I am dizzy – another side effect that should go away after 6 months they say. It’s been 5 months and I have lost 23 of the 57 lbs I gained over the course of 6 years. I am still dealing with very bad pain in my knees, and constant numbness in my fingers and hands. Brain fog and forgetfulness are also pretty bad, and worse then it was before surgery. And there are still times when I am overly emotional and will start crying over little silly things, but that too is getting better gradually. My sleep has improved a little, I am not always waking up every hour like before surgery, and I don’t need as many naps. My blood pressure is way down and finally normal without any medication. And my anxiety is so much better.

I know it will take much more time to get back to a better life, and probably longer than others because of my Fibro, but I am glad I had surgery because it gave me a second chance. I am going for my next MRI in May to see if any new tumors are forming, and I am told this will happen every 6 months for a while. Praying for a clean brain this time, and hoping for better years ahead. I am also waiting on my Disability hearing because I still can’t work, and I don’t see that improving anytime soon. But for now, with my faith in God stronger than it was before, I can say everything will be ok.