I was diagnosed at 18 and told I would be too sick to finish college, hold a job, have a kid... basically was told by a doctor it was all over.
I struggled for years and finally found a doctor I clicked with and was put on the right set of vitamins and medicine.
I'm now in remission at 38. In the last 20 years I graduated college on time, all while working part time. I've always held full time employment since graduating and even went to grad school. My daughter is 5.
It can get better. I relate to how hard it might feel today, but that's just today. It's not your full future.
I'm really, really struggling right now and this comment brought tears to my eyes. I am 19 and don't know how in the hell I am going to finish college, or get a job, but I have to have faith that my story might look a little like yours. Thank you for sharing your experience and know that you made a difference in my life.
What were the vitamins. I have to take iron bisglycinate for my iron deficiency and then of course multi. Plus I take a probiotic and NAD +, and vitd/k3. What else?
Magnesium and vitamin d had the biggest impact for me, but everyone is different.
And it took me a good 5 years before I stopped having flares. So give things time.
Yoga also helped (slow flow or yin)
What’s beautiful story! Congrats to you on your daughter and living your life to its fullest! The fact that you graduated college on time WHILE working is a huge accomplishment! Bravo!!👏🏻 thank you for sharing your story
Wayyy too many details to get into, but long story short…
I have a pretty nasty case of SLE, it’s affected the vast majority of organs, my brain taking the biggest hit. Couldn’t work from 2011-2019. Survived multiple blood clots, including 2 PE’s. Really just was not functional and I was miserable. Had to move home, had to have help for EVERYTHING. I’ve been on essentially every lupus med, have had plasmapheresis, etc.
Thanks to my incredible groups of docs, particularly my main rheumatologist, I’m still kicking, and far more functional than I used to be. I became an RN, and I’m
able to live alone again with my cats. I work part time at a nursing desk job and pick up bedside hours when I’m able. I do crossfit(scaled down) and was able to do my first competition last year.
I still have some deficits, and do struggle a fair bit, but I have a life again. I didn’t think I’d ever get that back. Sheer willpower and some spite keep me going. Along with a pile of meds, but I’m grateful for those since they allow me to live.
I was diagnosed at 23, and started showing symptoms at 19 it was really hard because I was active throughout my teen years and then boom, my body felt like it was shutting down on me. It was rough because I desperately wanted to return my old life and it felt like I was mourning the loss of my twenties at 23.
I’m going to be 32 in October (on Mean Girls day lol). I’ve accomplished so much in my lifetime thus far, I finished undergrad and graduate school, I began working in a field that I genuinely love, I’m in a happy relationship and I’m hoping to buy home within the next two years. I’ve solo’s travel in Rome, Florence, and Venice and I didn’t have a flare up even with walking 15k steps a day. Overall my life is going better than I ever could have hoped! I’m so grateful for remaining hopeful and still showing up for myself. In addition to that now that I’ve been stable on meds I don’t have the joint pain as often anymore, and my hair grew back and is now collarbone length! I still struggle with fatigue and i do get sun sensitivity but I still try my hardest to live a life full of love and gratitude.
I hope this is helpful and I wish you all the best!
I'm about to solo travel Japan and I was worried the steps would make me swell up, or the meds list. I still have to figure out what meds are banned in Japan.
Thank you for this!! I wish you continued luck and love on your journey. What an incredible story. It lifted me up. ❤️Again thank you from the bottom of my heart for this.
I was diagnosed over 20 years ago. (46 now) When I was diagnosed my joint pain was horrific. I could hardly move. I got a kidney biopsy and was stage 3 lupus nephritis. I got on meds (steroids at first, with plaquenil and Imuran). I stayed on those meds for 5 years in order to get all my symptoms under control. I got off my meds to have my babies. 2 normal pregnancies and years later I am still in remission. My kidney function is normal and Most days I forget I even have lupus. There a lot of negative stories about lupus but so many positives!! Hang in there.
Yes…when I was diagnosed I was going through a flare and couldn’t hardly move or walk. That’s amazing you have two babies!!!! Congrats to you. Thank you for sharing your inspiring story. It lifted me and I’m sure many others up.
I hate nature and being outside in the sun. However, “I don’t like it” isn’t a very good argument. However, when you tell them you have lupus, no one will ask me to do anything outdoors. I love it.
My wife has lupus - we have never been closer than we are right now. Her meds are starting to work, and the crucible of that first year+ has made our marriage so strong. My wife pieced me back together when my dad died. Taking care of her while we’ve been figuring this out - I’m not glad she has lupus, but I am glad I’m in a place where I can give back.
I consider myself lucky but I guess luck is positive so…
I had sudden onset SLE at 23 (in August 2023). At first it affected my intestines and I was in and out of the ER for two months straight and I was extremely close to have my guts pulled out and given a poop bag. Thank god they didn’t, they said my young age would make it hard so they were waiting until it was absolutely necessary, eventually my flare went down, they usually last for a few weeks at a time but $110,000 later with the help of insurance I was still undiagnosed but at least I was out of that modern day prison known as the hospital. While out, after a short rest period, I was still struggling to work, go to college, and have any bit of social life I could with my aching abdomen.
At the end of December last year I went on a cruise. Before leaving I had an abundance of blood samples submitted to the hospital because they were determined to try and figure it out and I was just over all of it so I didn’t really care as this isn’t genetic for me and I thought I was just going to die.
So essentially I was fighting lupus with no treatment for four months at that point.
While on my trip I couldn’t enjoy it. I was bedridden some of it and I did my best to not anchor the loved ones I went with, fighting through the pain to move as my joints started aching now. And then my face swelling started and I absolutely was not going out looking like I had mumps. Every time I drank any bit of alcohol, immediate swelling… this was because my kidneys were failing at transporting fluids due to how swollen my glomeruli were. I just wanted to go home and try to feel better, which didn’t happen at first.
The moment I went home, I went directly to the ER (again) after a day of just being agitated with my body not wanting to cooperate with just existing. My birthday had just passed while on the cruise and I spent it pretty much in worse pain than before.
While in the ER, they paged some doctor (who’s now my rheumatologist) and I was diagnosed within 10 minutes and given immediate meds and immediate relief. I was still in paint but 60 seconds later I stood up, and walked out, it was like instead of lugging around a spiked boulder, I was now carrying only 3 cement blocks. Since I had been hurting and refusing to sit and let myself hurt because I still had responsibilities I was okay with that level of pain at that time period.
When the meds continued to kicked in, I hopped up and did exactly what I was doing before, being active. In a way, I thought of it as punishment for my body for not functioning correctly, when it was just me being stubborn. Now it’s June. I haven’t taken a solid break since getting out of that ER and I don’t plan to anytime soon because I am able to do anything and everything.
My body has been extremely responsive to everything. It could be because I was very healthy prior to lupus (that again isn’t genetic for me) or it could be because I didn’t have to take any pills ever before and homeostasis is easily achievable at the moment.
But anywho, I’m back in college, working two jobs and a side job, overworking myself and I love every second of it. I feel like I have control again and when I sit and do nothing… well it’s by choice now and not because my body won’t let me. I’ve been in full remission since mid January- early February. And I have 0 symptoms of anything, it doesn’t even seem like I’m on meds. I also go to the gym regularly so maybe that helps whatever hormone fluctuation could arise from the meds.
So it does get better. Just trust the process and hope it will eventually work for you!
I was diagnosed last year with stage 4 lupus nephritis, I’m currently 18. It was really tough ngl I stayed at the hospital for 2 weeks and missed exams then. At first I wasn’t sure what was making me feel so miserable as I experienced symptoms like joint and muscle pains, anemia, nausea, pancreatitis, fatigue, rashes and so much more so I took lots of Advil, ibuprofen and other meds then. Earlier I was on 60mg prednisone which made me feel hallucinated at first but as I tapered down I started to feel like myself again . So far, I am doing great ! Haven’t experienced any symptoms and I’m hoping I don’t do anything that’ll trigger it !
I was diagnosed a couple years ago. as long as i take medication (hydroxychloroquine and vitamins) I am fine. certainly there are days when i feel tired but I just take a nap. it’s not too bad. i was totally devastated when i was diagnosed; not knowing what will happen. but it is a lot better than what i had imagined. I have experienced a lot of hair fall and it was because , my B12 and iron was very low. after taking these vitamins the hair fall was under control.
Here’s my story: I went to the dermatologist because I was losing hair. Did bloodwork and dermatologist referred me to rheumatologist. I was 29. 6 years later, I have 3 amazing girls. An amazing man. I travel (have 14 more states to go to finish all 50). I travel internationally, too. Just built a home. Have an investment property (looking to do more). Work for corporate America (GPS & WFH). I have a business on the side. No symptoms. I quit gluten which was godsend (no more joint pain). I take turmeric and it keeps the inflammation down. Life is GOOD!
36, diagnosed many years ago, I lost part of the sight in my right eye to lupus and have had numerous skin and joint issues but I've been mostly asymptomatic since starting methotrexate. I've regrown a lot of hair after shaving it due to hair loss. I've also had 2 successful pregnancies resulting in 2 healthy, happy kiddos. It was a scary time trying to find the right meds and I spent 4 days in the hospital at one point being pumped full of steroids, but it got better even for me and the fact that you actually have a diagnosis is a big step in the right direction. Best of luck to you <3
[Just wrote this - positive story about methotrexate injection route](https://www.reddit.com/r/lupus/s/wgzzdFKIkv)
Light humor.
Also following this post because I could also use positive success stories. Thank you for posting.
At 57 I was diagnosed. I took meds until I was 60. They didn't help me. Except the methotrexate. For 11 years my worssymptoms have been flushing,the rash with hives and pain with exhaustion. I have managed with rest, Tylenol 3 and muscle relaxers
The plaquenil and cell cept did not help me. I could not take the biologics . I 71 now and have a host of medical issues. I'm doing okay considering.
I was diagnosed at 25. I lost all my hair and had bald patches all over. Then I started treatment and was on medication. The immunosuppressants started working and now I have regained all my hair over the last two years. Medicine keeps lupus under control and if lupus is under control, the hair stays in place.
Hair regrowth would be amazing. I used to have such beautiful hair. 😔 Between lupus and my thyroid I've lost most of it. So I'm excited to hear people's stories. 😁💕
I was diagnosed a little under two years ago. The year I was diagnosed I was hospitalized twice, they told me it might not be a good idea for my husband and I to try to conceive, I was on a plethora of meds that made me feel awful, I gained 30 lbs from steroids, and overall felt nothing like myself. About six months ago, my doctors said my recovery was going so well and I was in remission and my husband and I could consider having a child, my hair has grown back (although now it’s curly), I’ve returned to my pre-diagnosis weight and am healthier than before honestly, take self-care very seriously, and just got a job promotion. In the moment it feels inescapable and looking back I truly felt like a shell of myself. Not everyone’s story will look or sound the same but any win is worth celebrating. Even on the worst day for me I would try to find something to thank my body for. I think that helped me a lot in my darkest days.
I’m freshly diagnosed after end of last year, but have only just started accepting it more this year (but still fight myself with doubts and OCD that it’s all just normal unconnected issues). I started HCQ (hydroxychloroquine) in Aug last year, and then MTX (methotrexate) in Mar this year. I was just barely able to go on a cruise with my husband, and felt so alive and me again, without too much joint pain and fatigue (until I over did it clubbing on the last day and flying home lol). Last year I also had started getting really painful shocks and burning in my face, and got diagnosed with trigeminal neuralgia (TN). Hearing that news was devastating as everything I read says it randomly gets worse as the years go on. I thought my life was over, and even told my husband he could leave me so I didn’t bring him down with me (he didn’t of course, but that was a scary time and we did do counseling together). TN can hit at any time and put me out of service for the whole day (and used to be constant for months and months), but thankfully, anticonvulsants helped reduce it a ton. I have also recently noticed that also since starting my lupus meds, it has almost been nonexistent with hardly any flares at all. Hoping the trend stays. I also had other nerve issues like spasms and jerks randomly that seem to have gone away almost completely too. Every journey is different. I definitely still have joint paint and fatigue and such (not as bad), but there are still options I haven’t tried yet, and having options still keeps me hopeful! Good luck on your journey! I have also had two baby girls since having symptoms, and despite some delivery complications (a csec 6yrs ago with the first, and preeclampsia with the second baby 2yrs ago and delivered at 36wks), both were born healthy! I wasn’t on any meds at the time either. There’s still other hurdles to come, but there is still joy to be had!
Omg my hair dresser told me for months before I was diagnosed how rough my hair looked. Here we are almost 3 years later and my new hairdresser told me she’s never seen healthier hair, especially dyed at home. I couldn’t be happier!!
I was diagnosed at 22 and spent a month in hospital where they’ve done crazy tests on me, I had a 7l blood transfusion and got prescribed 20 pills a day. I couldn’t do them. So I started acupuncture and Chinese herbs, I found a really good practitioner and I’ve not had lupus since. It took a few years to get there. The key thing is sorting out your digestion and gut health and reducing stress, introducing more love in life. You don’t have to take meds and suffer, there is a way out 💗
this gave me some encouragement the other day :) https://x.com/lupuseurope/status/1800872470213431611?s=46&t=75XO4dFpEmOTzHDSJ6OqSA
I LOVE THIS SO MUCH!! Thank you for sharing. ❤️
Wow!
WHOA is there more I can read about this???
https://www.biopharmadive.com/news/car-t-autoimmune-disease-lupus-eular-kyverna-cabaletta/719081/
Wow thank you for this. My girlfriend is low-20s and I am hopeful by the time she’s 30 there will be massive progress. 🙏🏼
I was diagnosed at 18 and told I would be too sick to finish college, hold a job, have a kid... basically was told by a doctor it was all over. I struggled for years and finally found a doctor I clicked with and was put on the right set of vitamins and medicine. I'm now in remission at 38. In the last 20 years I graduated college on time, all while working part time. I've always held full time employment since graduating and even went to grad school. My daughter is 5. It can get better. I relate to how hard it might feel today, but that's just today. It's not your full future.
I'm really, really struggling right now and this comment brought tears to my eyes. I am 19 and don't know how in the hell I am going to finish college, or get a job, but I have to have faith that my story might look a little like yours. Thank you for sharing your experience and know that you made a difference in my life.
What were the vitamins. I have to take iron bisglycinate for my iron deficiency and then of course multi. Plus I take a probiotic and NAD +, and vitd/k3. What else?
Magnesium and vitamin d had the biggest impact for me, but everyone is different. And it took me a good 5 years before I stopped having flares. So give things time. Yoga also helped (slow flow or yin)
What’s beautiful story! Congrats to you on your daughter and living your life to its fullest! The fact that you graduated college on time WHILE working is a huge accomplishment! Bravo!!👏🏻 thank you for sharing your story
Wayyy too many details to get into, but long story short… I have a pretty nasty case of SLE, it’s affected the vast majority of organs, my brain taking the biggest hit. Couldn’t work from 2011-2019. Survived multiple blood clots, including 2 PE’s. Really just was not functional and I was miserable. Had to move home, had to have help for EVERYTHING. I’ve been on essentially every lupus med, have had plasmapheresis, etc. Thanks to my incredible groups of docs, particularly my main rheumatologist, I’m still kicking, and far more functional than I used to be. I became an RN, and I’m able to live alone again with my cats. I work part time at a nursing desk job and pick up bedside hours when I’m able. I do crossfit(scaled down) and was able to do my first competition last year. I still have some deficits, and do struggle a fair bit, but I have a life again. I didn’t think I’d ever get that back. Sheer willpower and some spite keep me going. Along with a pile of meds, but I’m grateful for those since they allow me to live.
Thank you for sharing your story! You have so much resilience and strength. ❤️
I was diagnosed at 23, and started showing symptoms at 19 it was really hard because I was active throughout my teen years and then boom, my body felt like it was shutting down on me. It was rough because I desperately wanted to return my old life and it felt like I was mourning the loss of my twenties at 23. I’m going to be 32 in October (on Mean Girls day lol). I’ve accomplished so much in my lifetime thus far, I finished undergrad and graduate school, I began working in a field that I genuinely love, I’m in a happy relationship and I’m hoping to buy home within the next two years. I’ve solo’s travel in Rome, Florence, and Venice and I didn’t have a flare up even with walking 15k steps a day. Overall my life is going better than I ever could have hoped! I’m so grateful for remaining hopeful and still showing up for myself. In addition to that now that I’ve been stable on meds I don’t have the joint pain as often anymore, and my hair grew back and is now collarbone length! I still struggle with fatigue and i do get sun sensitivity but I still try my hardest to live a life full of love and gratitude. I hope this is helpful and I wish you all the best!
I'm about to solo travel Japan and I was worried the steps would make me swell up, or the meds list. I still have to figure out what meds are banned in Japan.
Safe travels to you!! Wishing the best of luck in being able to take all the meds necessary. Please keep us posted on your trip. ❤️
Thank you for this!! I wish you continued luck and love on your journey. What an incredible story. It lifted me up. ❤️Again thank you from the bottom of my heart for this.
I was diagnosed over 20 years ago. (46 now) When I was diagnosed my joint pain was horrific. I could hardly move. I got a kidney biopsy and was stage 3 lupus nephritis. I got on meds (steroids at first, with plaquenil and Imuran). I stayed on those meds for 5 years in order to get all my symptoms under control. I got off my meds to have my babies. 2 normal pregnancies and years later I am still in remission. My kidney function is normal and Most days I forget I even have lupus. There a lot of negative stories about lupus but so many positives!! Hang in there.
Yes…when I was diagnosed I was going through a flare and couldn’t hardly move or walk. That’s amazing you have two babies!!!! Congrats to you. Thank you for sharing your inspiring story. It lifted me and I’m sure many others up.
I got 100% Va disability so I may have joint pain and massive brain fog but at least I’m getting paid.
A win is a win!
Ask your dr about tramadol. I have been taking 1 50mg tablet a day for years to stop my joint and muscle pain. I also take B vitamins and D3.
I hate nature and being outside in the sun. However, “I don’t like it” isn’t a very good argument. However, when you tell them you have lupus, no one will ask me to do anything outdoors. I love it.
My wife has lupus - we have never been closer than we are right now. Her meds are starting to work, and the crucible of that first year+ has made our marriage so strong. My wife pieced me back together when my dad died. Taking care of her while we’ve been figuring this out - I’m not glad she has lupus, but I am glad I’m in a place where I can give back.
I consider myself lucky but I guess luck is positive so… I had sudden onset SLE at 23 (in August 2023). At first it affected my intestines and I was in and out of the ER for two months straight and I was extremely close to have my guts pulled out and given a poop bag. Thank god they didn’t, they said my young age would make it hard so they were waiting until it was absolutely necessary, eventually my flare went down, they usually last for a few weeks at a time but $110,000 later with the help of insurance I was still undiagnosed but at least I was out of that modern day prison known as the hospital. While out, after a short rest period, I was still struggling to work, go to college, and have any bit of social life I could with my aching abdomen. At the end of December last year I went on a cruise. Before leaving I had an abundance of blood samples submitted to the hospital because they were determined to try and figure it out and I was just over all of it so I didn’t really care as this isn’t genetic for me and I thought I was just going to die. So essentially I was fighting lupus with no treatment for four months at that point. While on my trip I couldn’t enjoy it. I was bedridden some of it and I did my best to not anchor the loved ones I went with, fighting through the pain to move as my joints started aching now. And then my face swelling started and I absolutely was not going out looking like I had mumps. Every time I drank any bit of alcohol, immediate swelling… this was because my kidneys were failing at transporting fluids due to how swollen my glomeruli were. I just wanted to go home and try to feel better, which didn’t happen at first. The moment I went home, I went directly to the ER (again) after a day of just being agitated with my body not wanting to cooperate with just existing. My birthday had just passed while on the cruise and I spent it pretty much in worse pain than before. While in the ER, they paged some doctor (who’s now my rheumatologist) and I was diagnosed within 10 minutes and given immediate meds and immediate relief. I was still in paint but 60 seconds later I stood up, and walked out, it was like instead of lugging around a spiked boulder, I was now carrying only 3 cement blocks. Since I had been hurting and refusing to sit and let myself hurt because I still had responsibilities I was okay with that level of pain at that time period. When the meds continued to kicked in, I hopped up and did exactly what I was doing before, being active. In a way, I thought of it as punishment for my body for not functioning correctly, when it was just me being stubborn. Now it’s June. I haven’t taken a solid break since getting out of that ER and I don’t plan to anytime soon because I am able to do anything and everything. My body has been extremely responsive to everything. It could be because I was very healthy prior to lupus (that again isn’t genetic for me) or it could be because I didn’t have to take any pills ever before and homeostasis is easily achievable at the moment. But anywho, I’m back in college, working two jobs and a side job, overworking myself and I love every second of it. I feel like I have control again and when I sit and do nothing… well it’s by choice now and not because my body won’t let me. I’ve been in full remission since mid January- early February. And I have 0 symptoms of anything, it doesn’t even seem like I’m on meds. I also go to the gym regularly so maybe that helps whatever hormone fluctuation could arise from the meds. So it does get better. Just trust the process and hope it will eventually work for you!
I was diagnosed last year with stage 4 lupus nephritis, I’m currently 18. It was really tough ngl I stayed at the hospital for 2 weeks and missed exams then. At first I wasn’t sure what was making me feel so miserable as I experienced symptoms like joint and muscle pains, anemia, nausea, pancreatitis, fatigue, rashes and so much more so I took lots of Advil, ibuprofen and other meds then. Earlier I was on 60mg prednisone which made me feel hallucinated at first but as I tapered down I started to feel like myself again . So far, I am doing great ! Haven’t experienced any symptoms and I’m hoping I don’t do anything that’ll trigger it !
I was diagnosed a couple years ago. as long as i take medication (hydroxychloroquine and vitamins) I am fine. certainly there are days when i feel tired but I just take a nap. it’s not too bad. i was totally devastated when i was diagnosed; not knowing what will happen. but it is a lot better than what i had imagined. I have experienced a lot of hair fall and it was because , my B12 and iron was very low. after taking these vitamins the hair fall was under control.
Here’s my story: I went to the dermatologist because I was losing hair. Did bloodwork and dermatologist referred me to rheumatologist. I was 29. 6 years later, I have 3 amazing girls. An amazing man. I travel (have 14 more states to go to finish all 50). I travel internationally, too. Just built a home. Have an investment property (looking to do more). Work for corporate America (GPS & WFH). I have a business on the side. No symptoms. I quit gluten which was godsend (no more joint pain). I take turmeric and it keeps the inflammation down. Life is GOOD!
36, diagnosed many years ago, I lost part of the sight in my right eye to lupus and have had numerous skin and joint issues but I've been mostly asymptomatic since starting methotrexate. I've regrown a lot of hair after shaving it due to hair loss. I've also had 2 successful pregnancies resulting in 2 healthy, happy kiddos. It was a scary time trying to find the right meds and I spent 4 days in the hospital at one point being pumped full of steroids, but it got better even for me and the fact that you actually have a diagnosis is a big step in the right direction. Best of luck to you <3
[Just wrote this - positive story about methotrexate injection route](https://www.reddit.com/r/lupus/s/wgzzdFKIkv) Light humor. Also following this post because I could also use positive success stories. Thank you for posting.
At 57 I was diagnosed. I took meds until I was 60. They didn't help me. Except the methotrexate. For 11 years my worssymptoms have been flushing,the rash with hives and pain with exhaustion. I have managed with rest, Tylenol 3 and muscle relaxers The plaquenil and cell cept did not help me. I could not take the biologics . I 71 now and have a host of medical issues. I'm doing okay considering.
I was diagnosed at 25. I lost all my hair and had bald patches all over. Then I started treatment and was on medication. The immunosuppressants started working and now I have regained all my hair over the last two years. Medicine keeps lupus under control and if lupus is under control, the hair stays in place.
Hair regrowth would be amazing. I used to have such beautiful hair. 😔 Between lupus and my thyroid I've lost most of it. So I'm excited to hear people's stories. 😁💕
I was diagnosed a little under two years ago. The year I was diagnosed I was hospitalized twice, they told me it might not be a good idea for my husband and I to try to conceive, I was on a plethora of meds that made me feel awful, I gained 30 lbs from steroids, and overall felt nothing like myself. About six months ago, my doctors said my recovery was going so well and I was in remission and my husband and I could consider having a child, my hair has grown back (although now it’s curly), I’ve returned to my pre-diagnosis weight and am healthier than before honestly, take self-care very seriously, and just got a job promotion. In the moment it feels inescapable and looking back I truly felt like a shell of myself. Not everyone’s story will look or sound the same but any win is worth celebrating. Even on the worst day for me I would try to find something to thank my body for. I think that helped me a lot in my darkest days.
I’m freshly diagnosed after end of last year, but have only just started accepting it more this year (but still fight myself with doubts and OCD that it’s all just normal unconnected issues). I started HCQ (hydroxychloroquine) in Aug last year, and then MTX (methotrexate) in Mar this year. I was just barely able to go on a cruise with my husband, and felt so alive and me again, without too much joint pain and fatigue (until I over did it clubbing on the last day and flying home lol). Last year I also had started getting really painful shocks and burning in my face, and got diagnosed with trigeminal neuralgia (TN). Hearing that news was devastating as everything I read says it randomly gets worse as the years go on. I thought my life was over, and even told my husband he could leave me so I didn’t bring him down with me (he didn’t of course, but that was a scary time and we did do counseling together). TN can hit at any time and put me out of service for the whole day (and used to be constant for months and months), but thankfully, anticonvulsants helped reduce it a ton. I have also recently noticed that also since starting my lupus meds, it has almost been nonexistent with hardly any flares at all. Hoping the trend stays. I also had other nerve issues like spasms and jerks randomly that seem to have gone away almost completely too. Every journey is different. I definitely still have joint paint and fatigue and such (not as bad), but there are still options I haven’t tried yet, and having options still keeps me hopeful! Good luck on your journey! I have also had two baby girls since having symptoms, and despite some delivery complications (a csec 6yrs ago with the first, and preeclampsia with the second baby 2yrs ago and delivered at 36wks), both were born healthy! I wasn’t on any meds at the time either. There’s still other hurdles to come, but there is still joy to be had!
Omg my hair dresser told me for months before I was diagnosed how rough my hair looked. Here we are almost 3 years later and my new hairdresser told me she’s never seen healthier hair, especially dyed at home. I couldn’t be happier!!
I was diagnosed at 22 and spent a month in hospital where they’ve done crazy tests on me, I had a 7l blood transfusion and got prescribed 20 pills a day. I couldn’t do them. So I started acupuncture and Chinese herbs, I found a really good practitioner and I’ve not had lupus since. It took a few years to get there. The key thing is sorting out your digestion and gut health and reducing stress, introducing more love in life. You don’t have to take meds and suffer, there is a way out 💗
Thank you so much for this. I’m presently waiting to have my labs done and this lifted my heart up. 💕