Shingles

If you've been working through your own chronic pain for a while now – what would you tell someone who's just been diagnosed that you wish you had known?

I'll start...

I wish someone had told me to NEVER compare myself to others who were also sick. Pain management looks different for everyone. #ChronicPain #Neuropathy #neuralgia #ComplexRegionalPainSyndrome #Fibromyalgia #Nervedamage #MultipleSclerosis #Arthritis #Shingles #Migraines #BackPain #Cancer

Once again I woke up nothing but shooting chronic pain on top of all this bone internal pain shingles have have got me burning inside and out I don't know if I can take it anymore #ChronicPain #Shingles #Suicide

Have been having Shingles outbreaks for the last 2 years…now on my 4th attack. So painful. Wonder if it is connected to Lymes?

Hi, I’m new to The Mighty and look forward to hearing about your stories and sharing my story.

#MightyTogether

#Lupus

#HerpesZoster

#Shingles

Part 1 of 2 Growing up as a little girl, I wished for one thing my entire adolescence; a happy family. The kind that doesn’t hit, scream, or demean. The kind of family that doesn’t make you instantly cry as you step off the school bus because you know what hellish nightmare awaits you. I had given up hope at a young age that I would ever attain this dream. The endless cycle of #Abuse was bound to continue. I was certain I wasn’t going to make it to 18 anyway. I had no plan for adulthood, because why plan for something you will never obtain anyway?

I was wrong. Not only did I end up making it to 18, but I also worked hard on an escape plan. I worked 60 hours a week cleaning vacation homes, mansions, camps, basically any building I could find, because that was all I was qualified to do. Every day while scrubbing toilets I would dream about no longer having to clean 14 houses in 12 hours. I wanted a desk job more than anything. One day, one of my clients took a chance on me and gave me my first office job helping her out at her business. This position led to another job, which eventually got me into healthcare, which I was always interested in. Those years I walked 2 miles to and from work, rarely had anything in the fridge and went some winters without heat, but at least I didn’t have to break my back and hands cleaning houses anymore. I struggled to find myself and still didn’t hold much value to my life. When I was 21 years old, I met a guy. He had the same sick sense of humor as I did, and little did I know, he was battling his own inner demons. The first time we spoke, it felt like I had known him all my life. Still, I told myself there was no way I was going to be in a #Relationships . I just was not wired for that. He similarly had the same thoughts and we decided it was best that way.

Again, I was dead wrong. Our #Relationships was off before either of us knew what was happening and things moved quickly. In the back of my mind, I asked myself, how I could allow myself to trust someone like this. What was I doing? I’m not supposed to get married or have children. I don’t know how to have a healthy #Relationships , let alone raise another human being. I’m not even remotely equipped, but why can’t I picture myself without him? Why did he have to ruin my eternal plans of solitude where I would never again have to rely on someone else or allow them to let me down? Against my own judgement, I decided to take a chance on him, and myself respectfully. A couple years passed, and we were married. A year later and our daughter was born.

Finally, for once, I was right. Still, we struggled as young couples do. We were two kids with a lot of #Trauma that was never unpacked and were a recipe for disaster. We also worked opposite shifts for many years so that one of us could be home with our daughter at all times, barely making it mentally and financially. After having our daughter, I was in severe pain constantly and extremely fatigued. I saw many doctors and had so many tests done with no explanation. I was 29 years old when I was finally diagnosed with an autoimmune disease #RheumatoidArthritis . #PsoriaticArthritis followed shortly after that and most recently I have acquired #Lupus . I’ve had about 15 surgeries, hundreds of infusions, injections, staph infections, influenza several times that almost killed me, #Shingles , and countless other ailments. As if that wasn’t enough, my husband has his own health struggles physically and mentally and so does our daughter.

Throughout all of this, we somehow worked our way up at both of our jobs and on my 34th birthday in 2020 we finally did something wehad been actively trying to do and dreaming for the past decade. We purchased our dream house. It’s been over a year now since we moved in, yet we still find ourselves waking up almost every day and asking each other if this is a dream. How did two, once lost souls get here? Perseverance? Stubbornness? Luck? I’m sure there are plenty of people that wouldn’t’ understand how something as basic as a house and functional family could be considered “making it”, but for us it is everything.

I’m still not sure how nearly 14 years have gone by since that day two dysfunctional souls met, but I constantly think about how much everything would be different if neither of us took a chance on life. I truly believe we could have easily ended up dead or in prison. Even worse, I’m afraid we even could have repeated our

I am feeling somewhat down and depressed plus anxious. I joined The Mighty a few days ago and I'm just now feeling more comfortable telling my story. In 2006 i was diagnosed with Leukocytoclastic vasculitis. I had purpura all over both legs and it was very painful. It took a few months but I recovered and was relatively healthy for several years. Then as soon as I hit 40 it was like my health fell off a cliff. I was extremely tired all the time, depressed, and had night sweats. My doctor repeatedly checked my hormone and thyroid levels but they kept coming back "normal". Then I went to an ENT to get my ears cleaned. During the exam he felt my throat and said my thyroid was enlarged. I had an ultrasound and my thyroid levels checked, again. Finally I was out of range and I started synthroid. I noticed over the next few months my symptoms got worse and my neck was getting bigger. I had another ultrasound and talked my doctor into increasing my dose. The ultrasound showed I had nodules on my thyroid so he sent me to a pathologist who I well known around me for only testing the thyroid. I had a fine needle biopsy which came back benign. However, he said he could tell by looking at my thyroid I had hashimotos and sent a note to my doctor to test my TPO. It came back way, way out of range at over 800. My doctor said I had hashimotos in the past. By this point though I had been doing my own research and new that wasn't correct. Plus I went to an endocrinologist who was concerned I not only had hashimotos but graves disease too given how large my thyroid was. The graves test came back inconclusive. Meanwhile, I was on a hormone rollercoaster plus I developed shingles. I wound up in the hospital a few times and was taken seriously once till shift change where the new doctor brushed me off and sent me home. My primary care doctor was not happy the hospital brushed me off because I had chest pain. I saw a cardiologist a few times, was taken off synthroid then back on because my thyroid levels were all over the place, then after about 6 months everything calmed down and I was stable. I ended up changing primary care doctors since I couldn't get the old doctor to believe I had hashimotos plus he wouldn't check my iron levels. The new doctor checked my iron at my first appointment and found my ferritin level was very low but never tried to figure out why. Fast forward a couple of years and I start having severe pelvic pain. After seeing 6 doctors in the span of 2 months I finally get diagnosed with adenomyosis and fibroids. Nothing was helping with the pain and I had a total hysterectomy only keeping my ovaries. I woke up from surgery and the pain I had been in daily for several months was gone. Then about 7 months later the thyroid pathologist told me my thyroid was getting so enlarged I should see a surgeon about getting it removed. The same week I severely sprained my ankle and lost my insurance. Two months later with new insurance and still dealing with the sprained ankle I went to a pain management specialist and he sent me the physical therapy. By this point it was December so the holidays interfered with starting therapy and my Achilles tendon quit working and I was on crutches. Meanwhile, I couldn't work because I worked in catering and had a heck of a time getting on disability. I ended up having to quit my 2nd job because I just couldn't walk and be on my feet as long as that job required. Over the next 6 months I faithfully went to therapy and doctor appointments. I wound up in a walking cast at one point, sprained my ankle again, and had the big toe on the same foot sprained after someone walked right into me and stepped very hard on my foot. This caused me to go on workers compensation because it happened at work. Meanwhile at the same time my landlord decided he didn't want to renew my lease so I had to fight him in court and look for a new apartment. Oh and my insurance decided I had enough physical therapy so they cut me off. This brings us to January 2020. My whole family got sick in January with what we now know was covid, we didn't then. While I was still recovering we moved. I was able to return the physical therapy for a brief period till lockdown in March. I had a few virtual appointments then I was discharged about a month later. In September I went to a new endocrinologist and she looked at my records, ordered a new ultrasound. She confirmed my thyroid was way to large to even figure out what was thyroid tissue and what was nodules. She sent me to a surgeon who immediately scheduled me for surgery for a total thyroidectomy. I recovered from that, my anxiety spiraled way out of control and my husband took me to the emergency room one day. That got me into the counseling and with a psychiatrist right away and I'm on medication. With my anxiety getting under control of course something else had to start. In October I started having what I think are vasculitis flares. I tell my doctor who prescribed gabapentin and also started me on a statin due to high cholesterol because genetics. I am allergic to dairy, have gluten intolerance and overall already eat fairly healthy. So I started both new medications and immediately break out in hives over Thanksgiving. I stop both new medications and the hives don't go away. So after 2 rounds of prednisone they finally go away. The doctor wanted to wait a few months before trying anything new again. Meanwhile, the pain my legs gets worse but mostly tolerable. Then one day in February I'm doing normal housework and halfway through the day I am in so much pain I can't walk. I'm laid up in bed for a week. I make an appointment with a rheumatologist who I saw last week. He was really thorough, nice, and clearly explained his thoughts. He doesn't think it's the vasculitis flaring up and runs A LOT of tests, 12 vials of blood and a cup of urine. He briefly mentioned fibromyalgia. When I Google fibromyalgia I do check a lot of boxes for it. He said expected all the test results to come back negative but they didn't. I did what I know you're not suppose to do but I Googled the test results that came back out of range and the only things I can speculate is maybe I do have fibromyalgia, the vasculitis is flaring, and I may have a mild case of a hereditary blood disorder that is in my family, my dad had it and several cousins have it. It's spherocytosis. The only reason I speculate on the fibromyalgia is the soles on my feet really hurt and that does not go with vasculitis. I'm currently learning that I can't push myself or I over do it and wind up in a lot of pain. My feet constantly throb. I am starting to pace myself. I see the rheumatologist the first week of May to go over the test results. So that's my story, sorry it's long.

#Anxiety #hashimotos #Hypothyroid #Adenomyosis #Hysterectomy #HighCholesterol #Undiagnosed #Fibromyalgia #LeukocytoclasticVasculitis #ChronicPain #MultipleDisabilities #Spherocytosis #ChronicPain