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Whenever you have a flare or are just not feeling well, what self-care activities do you do to make your day better and more manageable?
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Lupus after years?
Hello,
Maybe I am jumping tje gun but I am been diagnosed for years with fibromyalgia for years and now autoimmune tests are coming back positive and they keep asking me about rashes on my face. They keep hinting at lupus. I have many indications of lupus, but tge long term rash, but I do get burned only on my cheels and nose, nowhere else. Idk if it is lupus yet, I am still trying to find a rheumatologist, but it has been 12 years at least of being told I am crazy and and another 4 years of fibro diagnosis.
#LupusDiagnosis
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Mid-week check-in: How’s your physical and mental health right now?
On a scale of 1 (really struggling) to 10 (thriving), how would you rate your mental and physical health so far this week? What’s been going well? What hasn’t?
If you have energy to spare, let’s support one another in the comments below.
♥️ P.S. For those who need a reminder that life if worth living, here are 11 messages of self-love from fellow Mighties: themighty.com/2022/02/self-love-affirmations-low-confidence
#Lupus #LupusDiagnosis #ChronicIllness #ChronicPain #CheckInWithMe #Spoonie
11 Self-Love Messages To You, From The Mighty Community
3. “I see you. I see the tears and fears in your eyes. I see the strength and stubborn tenacity in your soul. I see it all and it is beautiful.”
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Do you think this is lupus? Here are my symptoms and other issues thatake me wonder:
Debilitating fatigue for 10 years, tonsillectomy due to viral infections, viral meningitis, , two pelvic prolapse surgery due to prolapse of bladder, vagina, and rectum, carpal tunnel with swelling and pain particularly in the hands not RA been to rheumatologist, low grade fevers unknown causes, Rash on left leg for 2 years straight, poor circulation in hands and feet turning white when cold, vision problems , severe anxiety and depression with seizure like activity at times, hypothyroidism, blood work tested positive for old Mono, blood clot in my arm, severe panic attacks, m
#LupusDiagnosis
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Has anyone else been diagnosed with Lupus Profundus or Panniculitis?
I was diagnosed with SLE about four years ago and given Hydroxycloroquine and sent home with no education. Without MyLupusTeam and a lot of internet research, I wouldn't have known what to watch out for as far as alarming symptoms. This one is a doozy! Any help would be appreciated! Thanks. 🙏 #LupusDiagnosis #lupusprofundus #LupusAwarenessMonth
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Not ready for ANOTHER diagnosis!
Hello Lupies!
I'm a 25 year old with multiple chronic illnesses (Fibromyalgia, Ehlers Danlos type 3, CFS/ME, POTS, Cluster headaches and more.
Now they believe I have Lupus too. I was convinced it was RA at first because of the symptoms but they ruled it out and are now working on the lupus thing.
My other diagnosis' were all made together and it sent me into a spin with depression back then (10 years ago) and I'm so not ready for another one to be added to the list and go down the same road.
How did you all cope with diagnosis and treatment starting etc?
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How do tremors impact you?
This can be so complicated because we could have many different causes.
It could be hormone changes, condition, or medication. Are you on gabapentin? That could be a cause, it's actually a side effect that caused mine! However, if it's due to a condition here are a few things to research and look into.
1. CBD or medical marijuana. THC is generally needed for this and works best in reducing tremors. There are hundreds of different strains. It's best to work with a pain mangement specialist or a doctor who is certified that can direct you on a strain for you.
2. You have probably heard how useful omega-3 fatty acids are. One of the things they do is coating of the nerves’ myelin. These acids preserve the health of neurons and eliminate inflammation. Inflammation can worsen the situation in patients suffering from essential hand tremor. People in China have used this plant for hundreds of years when they had problems associated with the nervous system especially in cases of tremors.
This plant is rich in bulbocapnine and alkaloid, compounds that can reduce seizures, convulsions and tremors all over the body. It treats the tension and spasms in the muscles which lead to tremors. It is good to mention that this herb is used for treating some more serious problems like Meniere’s and Parkinson’s disease. Extract, tonic, tincture, pills are some of the form in which you can find Corydalis.
*As always, this is just from personal or friend's experience. Please refer to a doctor before starting something new.
Have you tried high doses of these suggestions, what was your experience?
#Fibromyalgia
#ParkinsonsDisease
#Tremor
#LupusDiagnosis
#SystemicLupusErythematosus
#Lupus
#ChronicPain
#Disability
#Depression
#Spooniehack
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Hello Lupus Groupies
I just wanted to introduce myself and say thank you, I am so glad to find this group! I have been living with fibromyalgia for the last 5 years and was just diagnosed with SLE Lupus a week ago. I was a little surprised by the diagnosis, I had it in my head that is was Rheumatoid Arthritis. These last few months have been extremely painful with swollen joints and my muscles have felt depleted and weak. From what I'm learning that seems to be a common symptom of Lupus as well.
I'm just grateful to now have a treatment course and hopefully find some encouragement and support within this group! #LupusDiagnosis #Fibromyalgia #SupportGroups
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How did you keep working with the cognitive symptoms in a job needing a lot of thinking? ##Lupus ##LupusDiagnosis
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How long did it take you to get diagnosed? I am 22 and have been trying to find answers to my life long chronic pain for 2-3 years now. ##Diagnosis
#LupusDiagnosis ##rhumatiodarthritis #PsoriaticArthritis #butterflyrash #chronic #ChronicPain ##autoimmune #help #justwanttofeelbetter
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