Systemic Lupus Erythematosus

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Systemic Lupus Erythematosus
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I'm new here!

Hi, my name is Tink4Neverland. I'm here because I have Fibro, RA, Systemic Lupus, and dermatomyositis. I was diagnosed almost 5 years ago and have never been in remission.
The more I learn, the more I think Fibro is the cause for most of my discomfort. I have read several things posted on Pinterest, and finally decided to join up!

#MightyTogether #Anxiety #Fibromyalgia #RheumatoidArthritis

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Is this the normal thing for sle lupus I’m on antibiotics but I have sore back and sucks to go to the bathroom 😪

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Defeating the Darkness

I was at the gym working out when I noticed my wrist was swollen. It appeared that a nodule had formed on my ulnar bone. I went and saw my PCP and she thought it was rheumatoid arthritis. I was bracing myself for the results of the blood work she drew. When I went back to see her again, she notified me that I have systemic lupus erythematosus. I was told I needed to see a rheumatologist and she gave me the name of someone that was highly recommended. I saw the rheumatologist and she started me on Plaquenil. She informed me that I would need to see her every three months for blood work. I was understandably shocked and fell into a deep depression. That was seven years ago, little did I know that that was only the beginning. There was a darkness awaiting me that I never saw coming.

Five years ago, I started seeing a new rheumatologist and explained the extreme pain that I always seemed to be in. At times it was so bad that it started at the top of my head and went through the bottoms of my feet. He explained to me that yes, I did have lupus, but it was well-controlled. I didn’t have any signs of inflammation. What was causing my pain and suffering was fibromyalgia. He started me on Gabapentin, Tizanidine for muscle spasms, and Diclofenac for pain. Despite the medications, I suffered from muscle aches, headaches, depression, anxiety, nausea, vomiting, dry heaves, joint pain, fatigue, and general misery. I explained all of this to my PCP, and she started me on the anti-depressant Cymbalta. The medications did relieve some of my pain but if I tried to exercise the pain intensified to the point that I would have to use a walker at home. I was 44 years old at the time and the last thing I wanted to do was use a cane or walker.

All the symptoms that I had caused my weight to balloon to one hundred and ninety pounds. Feelings of uselessness, grief, ugliness, and sadness overwhelmed me at times. Sometimes the headaches and nausea were so bad I would have to sleep in a dark room with only the television on. Those were the worst times for me. To this day I hate laying in bed with the lights off because I am reminded of the internal darkness that enveloped me and wouldn’t extinguish its grip.

No one knew how to help me or respond to me. I was socially isolated because even sitting in a chair upright caused me such horrible back pain that I stopped going out with friends. I worked from my bed or the couch because I needed to lie sideways to type on the computer. Thank God I could work from home because working in the office increased my pain and anxiety. There were times at work when I needed to use the bathroom frequently because I was so nauseated, I had dry heaves. Fibromyalgia also causes me to urinate so often that it is an annoyance. I had a co-worker tell me that people in the office wondered why I had to use the bathroom so much. I explained how fibromyalgia affects your central nervous system.

My life consisted of work, eating, and sleeping. Anytime I tried to exercise I would have intense pain that was hard to relieve. I have read and watched so many things on fibromyalgia and they all say that exercise is key. Well, my thought was how the hell do you exercise when it’s hard to even walk? That made me so mad at the time. I was tired of people that don’t have fibromyalgia trying to tell me how to manage it. If you don’t have fibromyalgia, you have no idea how life-changing and horrendous it is.

My husband who I adore felt at a loss for words and was saddened about my condition. He tried to encourage me to exercise and eat right but I was stuck in the darkness, and I didn’t know how to escape. However, I never lost faith and prayed regularly. Sometimes in the darkness of my room with a three-day migraine, nausea, and vomiting I would pray incessantly. This could not be my life for the rest of my days here on earth. I couldn’t stand being in my bedroom anymore just laying around and watching life pass me by.

About two months ago I decided I was going to change to change my life for the better. I went and saw my PCP and explained my symptoms. We increased the Cymbalta, and I started on low-dose Naltrexone for pain. These were game-changers for me. I felt better mentally and was motivated to exercise and lose weight. I started exercising at my gym very slowly. I would walk on the treadmill and lift very light weights. I didn’t push myself because I didn’t want to backslide. The exercise has helped me to lose forty-three pounds and I am mentally clear and happy. Just getting out of the house and going to the gym on my lunch break has brought great happiness to my life. I am more social now. I go out with my friends to dinner or to get our nails done. These little things have given life more meaning for me.

I went to a GI doctor and was diagnosed with irritable bowel syndrome. I am not on a special diet, but I watch what I eat and am trying to be healthier. I found a company called 310 Nutrition which makes a delicious chocolate smoothie that gives me more energy and has helped with my weight loss. This is the best I have felt in years.

I refuse to let this wretched illness define me or make me suffer anymore. I am taking charge of my life and am determined to live a good one. I graduated with my bachelor's in nursing in May and am doing better than ever. The purpose of my writing this is to tell you that things can get better and that you too can defeat the darkness.

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Just want to know what else is wrong with me🥺

I have fibromyalgia, SLE and Sjogrens. October 2022 I started having lower back pain and pressure. Then in Nov. I started having these low back muscle spasms that turned into seizure like spasms. I even have spasms in my feet where my toes spread out. It hurts so bad. My body gets stiff and then the jerking starts. I have had MRI on my brain, lower back and spinal tap. I have had a dr. tell me my mind was doing it to my body. I have had a dr. tell me he honestly do not know what it is. I started with my GP, neurologist and now neuromuscular dr. I’m on Baclofen 2 pills 4x day. In addition to my other meds. Sometimes I wish the labs or test would show what it is so I can at least know something. I go down the rabbit hole of trying to diagnose myself but it is exhausting on top of everything else going on with my body especially pain and still trying to work so I can keep my insurance! I think it is SPS or MS but the tests don’t reflect it! Any suggestions?

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I am to tired of it all.

I am sitting listening to music for the first time in so long.I have been fighting for so long that I don't know how to stop.Loving people is hard.They expect the best from you every day and yet they don't stop long enough to ask are you ? If lupus sle doesn't kill me,my loved ones will.

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I’m new here!

Hi, my name is MoniCat. I've been diagnosed with SLE and Sjogrens. Possibly MCTD with dematamyositis after feeling like garbage for years. I have relief now that I finally know I’m not crazy but now I’m scared because I’m not crazy and there is something wrong with me. I need to connect to learn how to manage, what helps, what hurts, and find support.

#MightyTogether #Lupus

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New here!

Hi! I’m new here. I downloaded the app about a year ago, but never used it. I am not a big fan of anything social media related or adjacent. Lol. But…I decided this would be good. I’m still trying to figure it out and how to use it. Haha. I’m sure I’ll get there…eventually.

#PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #EhlersDanlosSyndrome #CommonVariableImmuneDeficiency #MastCellActivationDisorder #chronicmigraine #ADHD #longcovid #Asthma #SystemicLupusErythematosus #RheumatoidArthritis

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