Ive had lupus 35 years. Started with thyroid disease, then kidney problems, then i got a bleeding disoder, raynauds . Today im covered in a weird rash and my hair is falling out. I have severe fatigue, chronic headaches, bone pain and swelling. Nothing has worked. Doctors have no idea. I just deal with it.😢😢
I’m sorry love. Im 47 in October and my mom had it, I am finally getting all the testing possible done. Lately I’ve been experiencing what you have. Bone pain, swelling, hair loss, horrible hair loss, chronic migraines, debilitating muscle fatigue and weakness as well. I know this has to be what’s been robbing me of my ability to work and live. Have you experienced muscle loss as well? I pray you can get better. I’m hoping this is my answer.
Listening to this, it's so sad, yet so nice. I am totally feeling empathy for all, yet also thinking: "where my people at?" They are right there! I am hoping everyone shown here are doing well. Thank you all for sharing.
I was diagnosed with lupus in 1996 my old doctor said I had an autoimmune disease but he never gave it a name the new doctor kept saying it can't be lupus even though I tested positive because he says I wasn't African-American. . My main problem was/ is pain. dropping things extreme pain. Every doctor I went to wanted me to take antidepressants. After 2 years of bouncing back and forth with antidepressants my daughter found me sleepwalking and when she asked me where I was going I said I was going to jump off the Edison bridge in New Jersey. I'm not a depressed person but the antidepressants were really screwing up with me. okay I'm in pain but the antidepressants were mentally putting me in a fog constantly. I guess if you don't have a chemical imbalance and you take something that's for a chemical imbalance you're creating a chemical imbalance. I finally said to the pain management doctor are you just trying to shut me up so I don't come in every 3 months and tell you "yeah I'm still in pain bit now I'm sleepwalking trying to find a bridge to jump off of". I was told well if you don't want to take the antidepressants be in pain until you die. My husband asked what does that mean? I said the antidepressants are to shut me up so nobody has to listen to me say Jesus Christ this hurts. I stopped all the antidepressants. I laugh and muddle through everything. I pick and choose my battles. I think a lot of autoimmune doctors are really busy just trying to shut patients up so they don't say "yeah I'm in pain" because they don't want to give pain medication the government is down on sick people getting pain medication because there are addicts out there. My body is very hostile to medications. I don't know why but my entire family is like that. The hair problem the very thin hair problem and in 2018 I started developing a rash on my nose first time for that. Way back in 1989 my old doctor said you have an autoimmune disease you've got to stay out of the Sun wear hats long sleeve shirts use sun block. I'm pretty diligent about that. I have to be very careful with antibiotics cholesterol medicines any kind of medication they give me I can't even take Motrin because it creates sand in my urine. I've handled my lupus by understanding I'm always going to be in pain pick and choose your battles wisely sleep when you can. I have to tell you I'm really sick to death of all the new pain management autoimmune doctors it's like listening to a record they all say the same thing oh well then you must need antidepressants. No.... I need something for pain.
Amen to that. I'm blessed to have a sympathetic dr. That gives me opioid pain medicine. Been on it since I was 41yr old im know 65 yr old and have never had any problems from my pain medicine. At least I don't have horrible side effects from the opiod med. I don't have to worry about them being toxic. I take them as prescribed and they help. No way could I take nsaids daily .just one dose of motion sent me to the e.r. with gastritis pain that I'll never forget ! I do take plaquenil after eating .
If y’all made it to this seminar. Applause 👏. I am tied up and focused on getting showered, surviving today and trying to appear somewhat human. I don’t focus on my Lupus, it stresses my fam incredibly. I’m sick for sure... but everyone including myself has kind of adjusted without really acknowledging the truth of why Mom has bad days and can’t DO things.
@Marian Cook 100% guarantee that you simply went into remission and that it’s likely already back. Not knocking remission! It’s great! You have a moment of normalcy. But wait for at least 1 year of being “cured” before you give others false hope.
I became an RN at 20 and worked until I was 57. I had to transfer to a desk job in case management 20+ years ago. I was surprised to see so many RNs there. I wasn't diagnosed until 2013 but had mild symptoms at times during my life. Fatigue is my disabler. Good days I can putter around the house for four hours. Then it's gone. Trying to manage the best I can.
Anyone can open one of those pull can lids. Just use a flat utensil by putting one end under the ring and push down on the other end. Necessity taught me that.
I have lupus, & I think the question about which activities are most effected by lupus is too complicated for a poll like this. For one thing, my initial response would have been, “Where is ‘K. All of the above’?” Some of these activities are more vital or more frequently needed, so if I only get to pick three activities, my reaction is to choose the most important activities for survival & tasks that happen on a daily basis. For example, taking care of children & going to school or work are more important than being able to do things outside. Some people don’t have children or a romantic partner. Personal hygiene can mean a lot of things. Do they mean just getting clean, or does that include shaving, hair styling, & makeup? Also, most people go to work 5 days a week, but don’t need to manage finances more than a few times a month-so the latter is less likely to be chosen than something a person struggles with daily-even if it’s just as greatly impacted by lupus. I think this question would have been better answered by letting people select all areas that are greatly affected by lupus, or even rate how greatly each activity is effected.
Fatigue, Loss of strength, cognitive, memory. All of it. Im suffering and I feel my Doctors think im crazy. They do not understand how im feeling because they dont have it. They keep telling me its Cadasil. But 2 tests were negative
Earlier Last year I was diagnosed with CANCER in 2019 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about a herbalist preparing herbal medicines to cure everything type of diseases. including CANCER, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CANCER and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now CANCER free, all thanks to Dr. PETER You can also contact this great herbalist for help by email: peteroare0@gmail.com or contact Dr. PETER through his whatsapp number: +2348161615389 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY LUPUS AND MORE ...... He will also be of help to you ...
Looking at the symptoms by burden, I agree that fatigue, joint pain & forgetfulness have the biggest impact on my life. In regards to activities... Work is #1, then chores & going out in the sun.
I was just DX with Lupus after years of being misdiagnosed. I have no fear of dying or getting sick. But I fear that I won’t be able to see my 2 and 7 year old boys grow up. That hurts me the most. I hope some follow up appointments yield that I only have a mild case of lupus and I pray to GOD that he atleast keeps me around to see them become men. That’s my only fear. The disease can take my body but just give me some time lord. That’s the only thing I want in this world. Just seeing my boys become independent and able to take care of themselves. After that I’m okay leaving them because I know they will have a chance. ❤
Ms. Hooks I know how you are feeling and understand your prayers. God hears your prayers. I have been where you are raising a family. Living with Lupus and it's daily struggles. It's been 44 years of living with Lupus. As I get older my body changes and my symptoms change too. I am telling you all this to say! You can experience remission. See children grow up to be the independent men you raise. There is always HOPE!!
Please don't take the harsh drugs they offer for lupus...there what causes serious illness and kidney problems. Plaquenil is good very few side effects. Also opioid pain med works very good for pain but government trying to make dr.s stop giving. I believe so we in so much pain we will succome to the pain infusions and meds that cost a fortune and are very hard on the body. Severe sometimes deadly side effects. It's sad cause the opioid pain meds are so safe and time prooven.
Watching this to try and get a better idea of what my 24 yo daughter goes through with lupus. Unfortunately she also has Down syndrome and had a TIA/minor stroke, so it isn't always simple to know how she's feeling and what specific symptoms are affecting her. I just want to give my deepest thanks to all of you for sharing your symptoms, worries, treatments, and hopes.
Someone mentioned their Lupus is worse in the winter. Mine was I reasoned lack of sun might be a part of it and feeling down all winter. I take vitamin D3 1000 iu and K2, for sun replacement AM and PM and No flush Niacin 500 mg morning only for happier days.
I just tested at a 2 equivocal on my ANA test. I'm going back in 12 weeks to do another test. I've been living with symptoms for years I am sitting here crying With the realisation that I very well may have lupus. Wondering why my doctor never did this test after years of complaining about the same symptoms.
I’m sorry I was just diagnosed two weeks ago I’m crying too It’s scary So many health ailments for years Just got out of the hospital for a week Treated with major steroids I hope you’re going to be ok
yes, it is horrible the things we are told so that we don t have to be identified as sick from something, especially as women. it is criminal that many of us have gone years, decades with horrible problems that are real and not normal, not in our head, not hormonal, not from poor diet or lack of exercise… if it were men being told the exact same things, even hormonal changes affect men, no one would just talks about it. it is evidence that the way our medical system operates is not good. Doctors aren t referring soon enough, specialists aren t spending enough time, other problems aren t being checked… in my case, the doctor i saw didn’t t like me, thought i had some other problems, sent me to cardiology and neurology. i had minor nerve damage except that they discovered i was suffering from severe heart failure. now how could they have missed that for so long? i had been having symptoms, the kind that women often present which they still don t take seriously enough, and for years this went on until a virus and pneumonia, etc, nearly wiped me out. twice in hospital for something else serious, i i flatlined and they almost could not revive me bc they were giving ne TOO MANY FLUIDS! can you imagine? after two more years, i finally had my doctor believe that i had something, by looking at my fingers he had learned at a training 5 years back, that it appeared as if i were one of the ppl with hands like he saw at that training of patients with scleroderma…tho my symptoms were like lupus with no lupus tests confirmable. going to the top derm. at stanford, a biopsy confirmed early scleroderma, which the staining during the microscope process had to be a little more specific to see the proof. this doctor took the time to go all the way to answer the question, bc he could see by all my problems that i was miserable and something should give answers by now. in the end, my scleroderma is a MCTD, so it is mixed as presenting with overlapping symptoms of lupus type but definitely progressing as scleroderma . so i learned to not fool around, escaping death and serious organ damage several times by listening to unqualified general practitioners …
long covid can be devastating. but hopefully it will get better. i had long flu… it damaged my heart and lungs badly. has taken me years and lots of critical treatments to keep me alive. now after 10 years the heart is good but lungs not so much. now i can just deal with the lupus scleroderma mixed i have had and wasn t diagnosed for over 10 years,
I have all of the symptoms since I was 10 yrs old and know 65 and all of these symptoms have intensified by 100% and the drs. Cannot figure out what I have. I have several family members that have passed away from lupus including my mother. This is very debilitating and very painful and no clue what to do..
I seriously want to make my parents watch this. When, years ago, I was finally diagnosed with ADHD, in spite of the fact that it clearly be explained every issue I was having they still continued to tell me I was lazy or wasn't trying hard enough.... When I ended up in. A state of depression..... I just needed to stop being so selfish and get out and do something.. I was ungrateful. Now that I have Lupus and struggle everyday. "Lupus isnt a real disease " they say.. "It's just an excuse to sit on your ass" Oh.. and "that Selina girl" they say ...! "that was all a publicity stunt" Seriously ? Tell that to the generous Friend who is now missing an internal organ!
I've gone through my family not believing me and thinking I was being lazy or trying to get out of chores, too. They said, "You don't have a fever, and you're not throwing up... ". I would often hurt, but it would be something different each day, "my stomach hurts", "my leg hurts", or "my arm hurts" and they would say, "Nobody is sick that much." I was young and I trusted them, so I started to question myself, and think, "Am I making it up?" Fortunately, it wasn't like that all the time. I had times when I couldn't do my homework, and my mom would sit with me at the table. When she asked why I couldn't do it, all I could say was, "I don't know". She started to realize that I was lethargic all the time (or "lacked the spark of life" as she puts it), so she took me to the doctor, but they couldn't find anything wrong until my symptoms suddenly became extremely severe a couple years later. (There was no questioning whether I was sick then!) I'm very blessed that after my diagnosis they have been very supportive & take care of me! I hope you ask your family to watch this video or other material about lupus with you, or to come to a doctor appointment with you, and can understand what you are going through. Good luck!
Wow I'm so sorry. First of all noone would get a kidney transplant for publicity. And adhd and lupus, you would think if it was all made up you would eventually find your passion and move on. I hate when people dont understand. Lupus can be fatal. I hope you find a better support system.
Several years ago I had a severe concussion. Some of my family did not believe that I had memory loss, headaches...yesterday I was diagnosed with lupus. I don’t want to tell some of them because they won’t believe me now too. My disease and my families reaction does not define me as a person and it does not define you either. 😘
I was told for YEARS a variety of bullshit. Lupus diagnosis was at first a relief! I wasn’t crazy!! I then went through a period of anger, resentment and depression... the meds were worse. Eventually I just said NO NOOOO! I am much improved from those initial years, but still deal with it on the daily. KNOW THAT YOU ARE THE ONLY PERSON WHO CAN TRULY UNDERSTAND AND HELP YOU. First and best lesson learned. Get ANGRY... let it fuel your determination to SURVIVE!
I intend to forget I get skin rash problems sleeping, I cant be in the sun , I numbness in the fingers an cramps in the stomach an feet, my eyes scratch
@@karimariemadden9328 No it's a process. First, you got to clean the system and then address the disease when you're building it back up. Last, is building up the minerals the body is lacking. When you do that you root out the autoimmune easily. Then focus on the bones (calcium) and finish with Silica to strengthen the fiber of the muscles. 😇😇😇
Earlier Last year I was diagnosed with CANCER in 2019 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about a herbalist preparing herbal medicines to cure everything type of diseases. including CANCER, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CANCER and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now CANCER free, all thanks to Dr. PETER You can also contact this great herbalist for help by email: peteroare0@gmail.com or contact Dr. PETER through his whatsapp number: +2348161615389 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY LUPUS AND MORE ...... He will also be of help to you ...
Hi there, I recently got diagnosed with uctd and in bracket my rheumatologist put (early lupus) do you have any idea why he put early lupus if he diagnosed me with uctd he left me all confused
UCTD is so general, but by writing early lupus, your doctor is signifying to your case for the future that of the most signs he saw were those of lupus rather than a different particular condition. so the next time you are treated they can either test more for other conditions as well depending on your symptoms and also confirm that lupus is the disease, so no longer will it be uctd. this is very important bc lupus isn t usually diagnosed until several of the top symptoms are shown repeatedly over time to be the progressive problem. it is important to note early lupus bc if you have incurring organ damage at a quicker rate in the future, they should be testing for that as a baseline so you don t suffer untreatable injury requiring transplants and such. i actually had the very same kind of situation.
@@deecee901 it should mean that it is a lupus dominant condition with other features of similar conditions. Rheumatoid arthritis, scleroderma, sjrogens or a few others could possibly be one of those that is also showing . firm diagnoses take time. read and learn how totake care of your self with new problems so you will be aware. good luck
Earlier Last year I was diagnosed with CANCER in 2019 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about a herbalist preparing herbal medicines to cure everything type of diseases. including CANCER, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CANCER and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now CANCER free, all thanks to Dr. PETER You can also contact this great herbalist for help by email: peteroare0@gmail.com or contact Dr. PETER through his whatsapp number: +2348161615389 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY LUPUS AND MORE ...... He will also be of help to you ...
I guess I'm kind of interested and how many people that responded to this were first prescribed and I depressants because I think they are the most horrible things that you could be taking especially if you're not depressed. Being run down being in pain yeah that can get you down but that doesn't necessarily mean you should be getting antidepressants. Every doctor I talk to except for my old doctor and my new doctor would stand there and tell me we'll take antidepressants or be in pain till you die.
Demand opioid!!! No bad side effects and they work very good for pain. You have to take as prescribed and even though you will build a tolerance and may need stronger dose their still better than the other choices that cause serious toxic effects. I've been on opioid since I was 41 I'm now 65 and on 50mcg.fentynal patch and 15mg. Oxycodone i.r. every 6 hours as needed . I'll probably stay on that dose until I get called to God. ....blessings to all❤
I just got diagnosed 10 months ago after over 15 years of various symptoms i have lupus sjogrens-syndrome and b.a.d.a.s i don't know where to even start i have a flare up every day i need help to get better
I have a question if anyone could please answer I'd really really appreciate it. These symptoms you all are speaking of, do they develop? I dont know how to explain my question so they'll be several but it is just describing the one. Does lupus progress? Will what's wrong with me continue to get worse inevitably? Like i don't have pain, will it get to where i will have pain? I haven't seen a doctor yet either but i plan on going asap. Lupus fits my symptoms it seems alot
I don’t know how to answer your questions unless you have actually been diagnosed with lupus, but I can see that you’re hurting. Please see a Doctor and get a Lupus bloodwork panel. There’s a lot of autoimmune disease that can be disguised as Lupus. Hugs.
@@crickettmoon7082 we have lupus but what that means for one person is different no two people with lupus are the same , I thought years ago my hair would fall out completely by now still look normal just very red flare ups happen just do one day at a time do not stress that is a trigger
The patient who has suffered from any kind of heart disease can experience several symptoms like shortness of breath, fluttering in chest, dizziness, fainting, tachycardia, bradycardia, etc. Chandigarh Ayurved Centre made a kit that is best for the heart. The kit has several natural herbs and bhasmas that protect the heart from various diseases naturally. The kit contains a total of 4 products - Detox premium powder, Trikatu syrup, Vaat nashak vati, Hrudroga Chintamani Rasa.
Same question, often tight calf, especially one side, is it SLE related? No pain but right calf often. Healthy heart. Healthy kidney. No MS but nobody knows why. Very confused
Fatigue, brain fog and pain are the worst but I miss wearing jeans! No strength in fingers to button them up so cursed to wearing pull on pants or loose baggy jeans!
Yes, fastening clothes (& pulling on tighter items like socks) is so difficult for me now. I don't wear clothes with buttons much anymore, and yeah, jeans are the worst! I haven't worn them in a very long time. Actually, my health has declined, so I wear pajamas and rest in bed most of the time. But when I get dressed in regular clothes, I look for something comfortable and easy to put on. If the zipper of the jeans is ok for you, you might try leaving the jeans unbuttoned and cover it with a belt. You could also try a trick from the pregnant ladies: put a rubber band or hair elastic through the button hole (so there's a loop on each side), then loop both ends over / around the button of the jeans (in lieu of the buttonhole). I've done this before and it was much easier than getting the button through the hole. I've also tried looping something around the button (maybe it was a hair elastic?), then thredding it through the button hole & tugging it, so the button follows through. Sometimes it worked, and sometimes it didn't. I think there's a tool you can buy that does the same kind of thing (and also helps with zippers), but I haven't tried one out. (Also, with this method, you'd have to have it with you whenever you use the bathroom!) I've had one pair of jeans that fastened with a hook closure instead of a button. (Well, it had a button on the inside-I just skipped over it, & I do the same with slacks.) So you could try to find a pair like that, or you could see if you could get your jeans altered to remove the button and add a hook closure. You could hide the now-irrelevant buttonhole with a sewn-on button, a pin / brooch, a belt, (maybe decorative stitching? or a decorative patch), or just a shirt that covers the waistband, of course. I hope you can find options that work for you & help you feel happier in your clothes!
@@Srsrsrst I think so They just found unspecified white matter in my brain..I noticed I will yell really bad at a small stressful situation This could be due to the pandemic And the death of my niece last year But yes I think lupus can cause psychosis
the worst of the pain began with migraines and frequent headaches. no treatments worked and i was left with constant bad headaches and frequent migraines now for 25 plus years.
@@marirogers0153 I had bad migraines when I was working. If begun soon enough with taking ergotamine, it didn't last long. In March of this year, 6 days and endless tests, scans adding to my Lupus of brain almost 20 mris without, then With contrast followed by scans of carotids. Then while contrast in veins whisked down hall for Stat echocardiogram then "bubble" . Checked for aneurysms everywhere oeven intervrntiinal radiography entering groin and threaded all the way up to brain and across and coming back down to groin.. 6 days, no aneurysm and learned glad I had ordered migrane caps filled with sections of gel to fit skull with handy velcro for snug fit.. I also put a cotton jersey cap on my thin hair (grew up with very thick and curly hair..and skin (discoid lesions on calves) inner 👂,
Now my gut doctor tried antihistamine on my IV in ER for second visit in week.voila! Abdominal pain resolved. Btw, Lupus is like an Allergy to whatever organ it attacks. Yep I am actually allergic to my Brain. My Mind is just "sharp as a tack" as the hosp. Doctors like to jest with me. Oh, my third 6-day hospitalization was in Seotember. Had very high fevers and got MANY BAGS OF ANTIBIOTICS WHICH THE PULMONARY SPECIALIST THERE DISCUSSED WITH OTHER SPECIALISTS REACHING Lupus of the Lungs too. Interstitial lobes. Scarring. Looked it up. Uncurable and progressive... 1st one diagnosed was just a lesion on my forehead, biopsy showed Lupus, but the dermatologist said jesting back in 2009, "well, this won't kill you. I also have rare Lupus Cerebritis which causes so many uncountable now on about 20 of these brain mris. Contrast shows little foci where veins bled, one wry radiologist termed it "chronic infarct". And that was last year. Hint to women, you can wear those comfortable Coobie bra in the mri! Bye now, and remember that Thankgiving is the Heart of Prayer. Family. Friends and looking forward to even More blessings, right around the Space/Time Corner...
I am not sure who this guy is, but let me tell you, these woman just want you to listen, get that smirk off your face. All your mmm or your t yeah , sure comments, they are not helpful. Woman just want you to listen and get it off their heads and hearts. You sound like you are a typical male Dr. Its why most woman go to woman Dr.'s or NP. If you have not had any experience with excruciating or debilitating pain like delivering a baby or head to toe body pain from a major car accident than you can not have empathy for anyone. You can pretend you have, but do you really feel it in your heart what these people are going through? I could not roll out of bed for weeks because of pain...My husband who we have both been in a major accident together, and were stuck in bed for 3 days with impact pain, could not really understand how I was feeling. You have to have had the for real experience of pain to know what these folks are feeling and going through on a day to day experience to even begin to get it. just my humble opinion after 30 years of being misdiagnosed with no help in sight. $$$$$$$$ that's what the medical professionals are all about. Not all, but most. They will give you that pain medicine, but than ask them to ween you off cause its killing you and what I got was, sorry, can't do it.
PLEASE PUT THE HONEY FROM NEW ZEALAND IN YOUR EYES..OVERNIGHT YOUR EYES WILL FEEL WONDERFUL...ITS CALLED MINUKA HONEY !!!!!PLEASE TRUST ME AND TRY IT FOR YOUR DRY PAINFUL SANDY FEELUNG EYES !!!!! AMAZING TREATMENT !!!!
What bothers me is the fatigue forgetfulness and joints pain ☹️
My brain will fog so bad my speech my words won’t come out correctly
I have lupus With nerve damage and Fibromyalgia as well Raynaud's syndrome is so depressing
Ive had lupus 35 years. Started with thyroid disease, then kidney problems, then i got a bleeding disoder, raynauds . Today im covered in a weird rash and my hair is falling out. I have severe fatigue, chronic headaches, bone pain and swelling. Nothing has worked. Doctors have no idea. I just deal with it.😢😢
I’m sorry love. Im 47 in October and my mom had it, I am finally getting all the testing possible done. Lately I’ve been experiencing what you have. Bone pain, swelling, hair loss, horrible hair loss, chronic migraines, debilitating muscle fatigue and weakness as well. I know this has to be what’s been robbing me of my ability to work and live. Have you experienced muscle loss as well? I pray you can get better. I’m hoping this is my answer.
Listening to this, it's so sad, yet so nice. I am totally feeling empathy for all, yet also thinking: "where my people at?" They are right there! I am hoping everyone shown here are doing well. Thank you all for sharing.
I was diagnosed with lupus in 1996 my old doctor said I had an autoimmune disease but he never gave it a name the new doctor kept saying it can't be lupus even though I tested positive because he says I wasn't African-American. . My main problem was/ is pain. dropping things extreme pain. Every doctor I went to wanted me to take antidepressants. After 2 years of bouncing back and forth with antidepressants my daughter found me sleepwalking and when she asked me where I was going I said I was going to jump off the Edison bridge in New Jersey. I'm not a depressed person but the antidepressants were really screwing up with me. okay I'm in pain but the antidepressants were mentally putting me in a fog constantly. I guess if you don't have a chemical imbalance and you take something that's for a chemical imbalance you're creating a chemical imbalance. I finally said to the pain management doctor are you just trying to shut me up so I don't come in every 3 months and tell you "yeah I'm still in pain bit now I'm sleepwalking trying to find a bridge to jump off of". I was told well if you don't want to take the antidepressants be in pain until you die. My husband asked what does that mean? I said the antidepressants are to shut me up so nobody has to listen to me say Jesus Christ this hurts. I stopped all the antidepressants. I laugh and muddle through everything. I pick and choose my battles. I think a lot of autoimmune doctors are really busy just trying to shut patients up so they don't say "yeah I'm in pain" because they don't want to give pain medication the government is down on sick people getting pain medication because there are addicts out there. My body is very hostile to medications. I don't know why but my entire family is like that.
The hair problem the very thin hair problem and in 2018 I started developing a rash on my nose first time for that. Way back in 1989 my old doctor said you have an autoimmune disease you've got to stay out of the Sun wear hats long sleeve shirts use sun block. I'm pretty diligent about that. I have to be very careful with antibiotics cholesterol medicines any kind of medication they give me I can't even take Motrin because it creates sand in my urine. I've handled my lupus by understanding I'm always going to be in pain pick and choose your battles wisely sleep when you can. I have to tell you I'm really sick to death of all the new pain management autoimmune doctors it's like listening to a record they all say the same thing oh well then you must need antidepressants. No.... I need something for pain.
Mow Banshee, We’ll Said.
Amen to that. I'm blessed to have a sympathetic dr. That gives me opioid pain medicine. Been on it since I was 41yr old im know 65 yr old and have never had any problems from my pain medicine. At least I don't have horrible side effects from the opiod med. I don't have to worry about them being toxic. I take them as prescribed and they help. No way could I take nsaids daily .just one dose of motion sent me to the e.r. with gastritis pain that I'll never forget ! I do take plaquenil after eating .
If y’all made it to this seminar. Applause 👏. I am tied up and focused on getting showered, surviving today and trying to appear somewhat human. I don’t focus on my Lupus, it stresses my fam incredibly. I’m sick for sure... but everyone including myself has kind of adjusted without really acknowledging the truth of why Mom has bad days and can’t DO things.
@Marian Cook 100% guarantee that you simply went into remission and that it’s likely already back. Not knocking remission! It’s great! You have a moment of normalcy. But wait for at least 1 year of being “cured” before you give others false hope.
@@KitKatToeBeans please people need to stop saying" cured "
@@KitKatToeBeans it doesn't just "GO AWAY"
I became an RN at 20 and worked until I was 57. I had to transfer to a desk job in case management 20+ years ago. I was surprised to see so many RNs there. I wasn't diagnosed until 2013 but had mild symptoms at times during my life. Fatigue is my disabler. Good days I can putter around the house for four hours. Then it's gone. Trying to manage the best I can.
Anyone can open one of those pull can lids. Just use a flat utensil by putting one end under the ring and push down on the other end. Necessity taught me that.
I have lupus, & I think the question about which activities are most effected by lupus is too complicated for a poll like this.
For one thing, my initial response would have been, “Where is ‘K. All of the above’?”
Some of these activities are more vital or more frequently needed, so if I only get to pick three activities, my reaction is to choose the most important activities for survival & tasks that happen on a daily basis. For example, taking care of children & going to school or work are more important than being able to do things outside. Some people don’t have children or a romantic partner. Personal hygiene can mean a lot of things. Do they mean just getting clean, or does that include shaving, hair styling, & makeup? Also, most people go to work 5 days a week, but don’t need to manage finances more than a few times a month-so the latter is less likely to be chosen than something a person struggles with daily-even if it’s just as greatly impacted by lupus.
I think this question would have been better answered by letting people select all areas that are greatly affected by lupus, or even rate how greatly each activity is effected.
All of Lupus stinks every single bit of it!!
Well said.
Fatigue fatigue fatigue fatigue, even with no pain. Still fatigue
the fatigue is overwhelming .
Omg. That fatique is killing me
Hello Sioban I listen to your story about living with Lupus. I wish you the best. I have been living with SLE Lupus for 43 years. I understand!!
8 also have kidney failure and liver along with congestive heart failure can I view rashes vidios
Right now it's the secondary Sjögrens, extreme fatigue (incl. narcolepsy), cognitive issues passed brain fog and the muscle and joint pain.
Fatigue, Loss of strength, cognitive, memory. All of it. Im suffering and I feel my Doctors think im crazy. They do not understand how im feeling because they dont have it. They keep telling me its Cadasil. But 2 tests were negative
Finding this is a god send. Just knowing yr not alone. Thank you.
Thank you for the information, to understand it more ,because I have it.
“People don’t understand”, TRUTH
Earlier Last year I was diagnosed with CANCER in 2019 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about a herbalist preparing herbal medicines to cure everything type of diseases. including CANCER, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CANCER and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now CANCER free, all thanks to Dr. PETER You can also contact this great herbalist for help by email: peteroare0@gmail.com or contact Dr. PETER through his whatsapp number: +2348161615389 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY LUPUS AND MORE ...... He will also be of help to you ...
The former RN's story made me tear up. What an amazing woman
Looking at the symptoms by burden, I agree that fatigue, joint pain & forgetfulness have the biggest impact on my life. In regards to activities... Work is #1, then chores & going out in the sun.
Thank you everyone on this video for sharing your experience! Thank you Tiffany Peterson for your courage!
I’m
I was just DX with Lupus after years of being misdiagnosed. I have no fear of dying or getting sick. But I fear that I won’t be able to see my 2 and 7 year old boys grow up. That hurts me the most. I hope some follow up appointments yield that I only have a mild case of lupus and I pray to GOD that he atleast keeps me around to see them become men. That’s my only fear. The disease can take my body but just give me some time lord. That’s the only thing I want in this world. Just seeing my boys become independent and able to take care of themselves. After that I’m okay leaving them because I know they will have a chance. ❤
Ms. Hooks I know how you are feeling and understand your prayers. God hears your prayers. I have been where you are raising a family. Living with Lupus and it's daily struggles. It's been 44 years of living with Lupus. As I get older my body changes and my symptoms change too. I am telling you all this to say! You can experience remission. See children grow up to be the independent men you raise. There is always HOPE!!
Please don't take the harsh drugs they offer for lupus...there what causes serious illness and kidney problems. Plaquenil is good very few side effects. Also opioid pain med works very good for pain but government trying to make dr.s stop giving. I believe so we in so much pain we will succome to the pain infusions and meds that cost a fortune and are very hard on the body. Severe sometimes deadly side effects. It's sad cause the opioid pain meds are so safe and time prooven.
Watching this to try and get a better idea of what my 24 yo daughter goes through with lupus. Unfortunately she also has Down syndrome and had a TIA/minor stroke, so it isn't always simple to know how she's feeling and what specific symptoms are affecting her. I just want to give my deepest thanks to all of you for sharing your symptoms, worries, treatments, and hopes.
@howardroll5068 hello from nyc. I am 77f i have ms, over 3 decades. I wish I only had di-scle. Which I have too!
Oh I most certainly agree tired of being tired
Fatigue, brain fog, joint pain
The lady speaking at 14: 25 sounds like she was describing Covid. I swear that's how these long haul symptoms feel😭😭😭☄️
Yes.. she is right my hand hurts so bad
Someone mentioned their Lupus is worse in the winter. Mine was I reasoned lack of sun might be a part of it and feeling down all winter. I take vitamin D3 1000 iu and K2, for sun replacement AM and PM and No flush Niacin 500 mg morning only for happier days.
I just tested at a 2 equivocal on my ANA test. I'm going back in 12 weeks to do another test. I've been living with symptoms for years I am sitting here crying With the realisation that I very well may have lupus. Wondering why my doctor never did this test after years of complaining about the same symptoms.
I’m sorry
I was just diagnosed two weeks ago
I’m crying too
It’s scary
So many health ailments for years
Just got out of the hospital for a week
Treated with major steroids
I hope you’re going to be ok
Me too they kept telling me change my diet and it's in my head 😒 I finally went to see a rheumatologist and I have low level lupus I go back in 4weeks
yes, it is horrible the things we are told so that we don t have to be identified as sick from something, especially as women. it is criminal that many of us have gone years, decades with horrible problems that are real and not normal, not in our head, not hormonal, not from poor diet or lack of exercise… if it were men being told the exact same things, even hormonal changes affect men, no one would just talks about it. it is evidence that the way our medical system operates is not good. Doctors aren t referring soon enough, specialists aren t spending enough time, other problems aren t being checked… in my case, the doctor i saw didn’t t like me, thought i had some other problems, sent me to cardiology and neurology. i had minor nerve damage except that they discovered i was suffering from severe heart failure. now how could they have missed that for so long? i had been having symptoms, the kind that women often present which they still don t take seriously enough, and for years this went on until a virus and pneumonia, etc, nearly wiped me out. twice in hospital for something else serious, i i flatlined and they almost could not revive me bc they were giving ne TOO MANY FLUIDS! can you imagine? after two more years, i finally had my doctor believe that i had something, by looking at my fingers he had learned at a training 5 years back, that it appeared as if i were one of the ppl with hands like he saw at that training of patients with scleroderma…tho my symptoms were like lupus with no lupus tests confirmable. going to the top derm. at stanford, a biopsy confirmed early scleroderma, which the staining during the microscope process had to be a little more specific to see the proof. this doctor took the time to go all the way to answer the question, bc he could see by all my problems that i was miserable and something should give answers by now. in the end, my scleroderma is a MCTD, so it is mixed as presenting with overlapping symptoms of lupus type but definitely progressing as scleroderma . so i learned to not fool around, escaping death and serious organ damage several times by listening to unqualified general practitioners …
Took me 10 to get diagnosed. A flare is what finally convinced them.
I've had long covid since February but I have every symptoms you describe
You have to go for herbs I will advice you on that
long covid can be devastating. but hopefully it will get better. i had long flu… it damaged my heart and lungs badly. has taken me years and lots of critical treatments to keep me alive. now after 10 years the heart is good but lungs not so much. now i can just deal with the lupus scleroderma mixed i have had and wasn t diagnosed for over 10 years,
Work and daily activity
Yess! I’m
So tired fatigue weak
Let’s chat about Covid 19 impacts on our lives? I know this is an old video... but I’m here so I assume others are coming across this video?
Yes. I was recent diagnosed and need to know how impact our lives
I woke up to the lady talking at 14:25 and the guy speaking at 19:28 Covid makes you feel that way.
All of them . Has caused eye damage
Wow 😮mine is not so bad. Thank you God.
I have all of the symptoms since I was 10 yrs old and know 65 and all of these symptoms have intensified by 100% and the drs. Cannot figure out what I have. I have several family members that have passed away from lupus including my mother. This is very debilitating and very painful and no clue what to do..
I have swollen legs monthly and pain in some fingers from time to time and little high lupus anticoagulant ratios, does this means i have lupus?
Answers concur w mine
Everything on that list
I seriously want to make my parents watch this. When, years ago, I was finally diagnosed with ADHD, in spite of the fact that it clearly be explained every issue I was having they still continued to tell me I was lazy or wasn't trying hard enough.... When I ended up in. A state of depression..... I just needed to stop being so selfish and get out and do something.. I was ungrateful. Now that I have Lupus and struggle everyday. "Lupus isnt a real disease " they say.. "It's just an excuse to sit on your ass" Oh.. and "that Selina girl" they say ...! "that was all a publicity stunt" Seriously ? Tell that to the generous Friend who is now missing an internal organ!
I've gone through my family not believing me and thinking I was being lazy or trying to get out of chores, too. They said, "You don't have a fever, and you're not throwing up... ". I would often hurt, but it would be something different each day, "my stomach hurts", "my leg hurts", or "my arm hurts" and they would say, "Nobody is sick that much."
I was young and I trusted them, so I started to question myself, and think, "Am I making it up?" Fortunately, it wasn't like that all the time. I had times when I couldn't do my homework, and my mom would sit with me at the table. When she asked why I couldn't do it, all I could say was, "I don't know". She started to realize that I was lethargic all the time (or "lacked the spark of life" as she puts it), so she took me to the doctor, but they couldn't find anything wrong until my symptoms suddenly became extremely severe a couple years later. (There was no questioning whether I was sick then!)
I'm very blessed that after my diagnosis they have been very supportive & take care of me!
I hope you ask your family to watch this video or other material about lupus with you, or to come to a doctor appointment with you, and can understand what you are going through. Good luck!
Wow I'm so sorry. First of all noone would get a kidney transplant for publicity. And adhd and lupus, you would think if it was all made up you would eventually find your passion and move on. I hate when people dont understand. Lupus can be fatal. I hope you find a better support system.
Several years ago I had a severe concussion. Some of my family did not believe that I had memory loss, headaches...yesterday I was diagnosed with lupus. I don’t want to tell some of them because they won’t believe me now too. My disease and my families reaction does not define me as a person and it does not define you either. 😘
Give me your parents number i want to give em a piece of my mind.
I was told for YEARS a variety of bullshit. Lupus diagnosis was at first a relief! I wasn’t crazy!! I then went through a period of anger, resentment and depression... the meds were worse. Eventually I just said NO NOOOO! I am much improved from those initial years, but still deal with it on the daily. KNOW THAT YOU ARE THE ONLY PERSON WHO CAN TRULY UNDERSTAND AND HELP YOU. First and best lesson learned. Get ANGRY... let it fuel your determination to SURVIVE!
I intend to forget I get skin rash problems sleeping, I cant be in the sun , I numbness in the fingers an cramps in the stomach an feet, my eyes scratch
Photosensitive, depression, joint pain
I’m
Completely done 5
Marks on my Body that don’t go Away !!!
Accurate symptoms...
B I’m flaring right now on off thing I have go on infusion of benlysta for 4 months
Memory
Cleanse all the heavy metal and yeast (Candida) from the body and load up on Iron (Fatigue) and kaboom.
So, you've cured Lupus just like that?
@@karimariemadden9328 No it's a process. First, you got to clean the system and then address the disease when you're building it back up. Last, is building up the minerals the body is lacking. When you do that you root out the autoimmune easily. Then focus on the bones (calcium) and finish with Silica to strengthen the fiber of the muscles. 😇😇😇
Me is always something different my legs days o can walk my legs are so swollen in pain I wake middle of the night legs pain
Sun exposed cold exposed is frustrating for me
Pretty much all of them
Earlier Last year I was diagnosed with CANCER in 2019 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about a herbalist preparing herbal medicines to cure everything type of diseases. including CANCER, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CANCER and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now CANCER free, all thanks to Dr. PETER You can also contact this great herbalist for help by email: peteroare0@gmail.com or contact Dr. PETER through his whatsapp number: +2348161615389 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY LUPUS AND MORE ...... He will also be of help to you ...
Exactly
Hi there, I recently got diagnosed with uctd and in bracket my rheumatologist put (early lupus) do you have any idea why he put early lupus if he diagnosed me with uctd he left me all confused
You probably should ask your Dr that question.
UCTD is so general, but by writing early lupus, your doctor is signifying to your case for the future that of the most signs he saw were those of lupus rather than a different particular condition. so the next time you are treated they can either test more for other conditions as well depending on your symptoms and also confirm that lupus is the disease, so no longer will it be uctd. this is very important bc lupus isn t usually diagnosed until several of the top symptoms are shown repeatedly over time to be the progressive problem. it is important to note early lupus bc if you have incurring organ damage at a quicker rate in the future, they should be testing for that as a baseline so you don t suffer untreatable injury requiring transplants and such.
i actually had the very same kind of situation.
Because he's not completely sure just what you're demonstrating I would think. For example I was told, MCTD. Now she is calling it lupus.
@@deecee901 it should mean that it is a lupus dominant condition with other features of similar conditions. Rheumatoid arthritis, scleroderma, sjrogens or a few others could possibly be one of those that is also showing . firm diagnoses take time. read and learn how totake care of your self with new problems so you will be aware. good luck
My flares from bad weather, chocolate, sugar, allergies at times for Milk products
All
Fatigue. Joint pain.
Earlier Last year I was diagnosed with CANCER in 2019 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about a herbalist preparing herbal medicines to cure everything type of diseases. including CANCER, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CANCER and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now CANCER free, all thanks to Dr. PETER You can also contact this great herbalist for help by email: peteroare0@gmail.com or contact Dr. PETER through his whatsapp number: +2348161615389 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY LUPUS AND MORE ...... He will also be of help to you ...
I guess I'm kind of interested and how many people that responded to this were first prescribed and I depressants because I think they are the most horrible things that you could be taking especially if you're not depressed. Being run down being in pain yeah that can get you down but that doesn't necessarily mean you should be getting antidepressants. Every doctor I talk to except for my old doctor and my new doctor would stand there and tell me we'll take antidepressants or be in pain till you die.
Demand opioid!!! No bad side effects and they work very good for pain. You have to take as prescribed and even though you will build a tolerance and may need stronger dose their still better than the other choices that cause serious toxic effects. I've been on opioid since I was 41 I'm now 65 and on 50mcg.fentynal patch and 15mg. Oxycodone i.r. every 6 hours as needed . I'll probably stay on that dose until I get called to God. ....blessings to all❤
I just got diagnosed 10 months ago after over 15 years of various symptoms i have lupus sjogrens-syndrome and b.a.d.a.s i don't know where to even start i have a flare up every day i need help to get better
You’re your only hope.
@@crickettmoon7082 i agree. I was diagnosed in 2001 and you have to have a total life style change. It’s like being reborn and learning life all over.
Pray and positivity and change in diet
ALL ACTIVITIES ARE AFFECTED...WTH
popowers Lupus is not curable ...
Exercise helps my lupus
Memory Loss at times
all of them
5
One symptom i didn’t hear them talk about is mouth ulcers
I have a question if anyone could please answer I'd really really appreciate it. These symptoms you all are speaking of, do they develop? I dont know how to explain my question so they'll be several but it is just describing the one. Does lupus progress? Will what's wrong with me continue to get worse inevitably? Like i don't have pain, will it get to where i will have pain?
I haven't seen a doctor yet either but i plan on going asap. Lupus fits my symptoms it seems alot
I don’t know how to answer your questions unless you have actually been diagnosed with lupus, but I can see that you’re hurting. Please see a Doctor and get a Lupus bloodwork panel. There’s a lot of autoimmune disease that can be disguised as Lupus. Hugs.
@@crickettmoon7082 we have lupus but what that means for one person is different no two people with lupus are the same , I thought years ago my hair would fall out completely by now still look normal just very red flare ups happen just do one day at a time do not stress that is a trigger
@@tracysmith245 I have Lupus as well, and it does indeed affect everyone in individual ways. ☮️
The patient who has suffered from any kind of heart disease can experience several symptoms like shortness of breath, fluttering in chest, dizziness, fainting, tachycardia, bradycardia, etc. Chandigarh Ayurved Centre made a kit that is best for the heart. The kit has several natural herbs and bhasmas that protect the heart from various diseases naturally. The kit contains a total of 4 products - Detox premium powder, Trikatu syrup, Vaat nashak vati, Hrudroga Chintamani Rasa.
Same question, often tight calf, especially one side, is it SLE related? No pain but right calf often. Healthy heart. Healthy kidney. No MS but nobody knows why. Very confused
It IS HEART DISEASE ❤
CALLED "ENDOGENOUS REFLUX DISEASE " VEINS HAVE LITTLE VALVES INSIDE TO PREVENT BLEEDOUTS.
Endovenous reflux
Solution is MORE WALKING!!!
@@vikingladyalban5642 thank you sooooo much !!! I will Google it.
@@vikingladyalban5642 I truly appreciate your answer, truly appreciate it,
Ive been complaining way too long. I know I have Lupus. I have every symptom. Ulcers in my nose and mouth. Rashes etc
Fatigue, brain fog and pain are the worst but I miss wearing jeans! No strength in fingers to button them up so cursed to wearing pull on pants or loose baggy jeans!
Yes, fastening clothes (& pulling on tighter items like socks) is so difficult for me now.
I don't wear clothes with buttons much anymore, and yeah, jeans are the worst! I haven't worn them in a very long time.
Actually, my health has declined, so I wear pajamas and rest in bed most of the time. But when I get dressed in regular clothes, I look for something comfortable and easy to put on.
If the zipper of the jeans is ok for you, you might try leaving the jeans unbuttoned and cover it with a belt. You could also try a trick from the pregnant ladies: put a rubber band or hair elastic through the button hole (so there's a loop on each side), then loop both ends over / around the button of the jeans (in lieu of the buttonhole). I've done this before and it was much easier than getting the button through the hole.
I've also tried looping something around the button (maybe it was a hair elastic?), then thredding it through the button hole & tugging it, so the button follows through. Sometimes it worked, and sometimes it didn't. I think there's a tool you can buy that does the same kind of thing (and also helps with zippers), but I haven't tried one out. (Also, with this method, you'd have to have it with you whenever you use the bathroom!)
I've had one pair of jeans that fastened with a hook closure instead of a button. (Well, it had a button on the inside-I just skipped over it, & I do the same with slacks.) So you could try to find a pair like that, or you could see if you could get your jeans altered to remove the button and add a hook closure. You could hide the now-irrelevant buttonhole with a sewn-on button, a pin / brooch, a belt, (maybe decorative stitching? or a decorative patch), or just a shirt that covers the waistband, of course.
I hope you can find options that work for you & help you feel happier in your clothes!
does anyone know if you have Lupus and you have memory fog now are you more susceptible to having Alzheimer's later in life
I've read that the opposite is true. I sure hope that's true because brain fog is enough for one person to handle...
Lupus can cause psychosis
@@Srsrsrst I think so
They just found unspecified white matter in my brain..I noticed I will yell really bad at a small stressful situation
This could be due to the pandemic
And the death of my niece last year
But yes I think lupus can cause psychosis
Omg 😱 let's pray is not true 😒🥺the Alzheimer's and lupus
@Marian Cook I thought lupas cannot be cured at all
Vim a man and I ve bienvtold I have lupus and I have now got red and blue spots all over my feet vn. Legs can I see other rashes like I'vebdescr8hed
3
Obviously organ failure as you are dying in end stages. That brings depression and lots of pain
the worst of the pain began with migraines and frequent headaches. no treatments worked and i was left with constant bad headaches and frequent migraines now for 25 plus years.
@@marirogers0153 I had bad migraines when I was working. If begun soon enough with taking ergotamine, it didn't last long.
In March of this year, 6 days and endless tests, scans adding to my Lupus of brain almost 20 mris without, then With contrast followed by scans of carotids. Then while contrast in veins whisked down hall for Stat echocardiogram then "bubble" . Checked for aneurysms everywhere oeven intervrntiinal radiography entering groin and threaded all the way up to brain and across and coming back down to groin.. 6 days, no aneurysm and learned glad I had ordered migrane caps filled with sections of gel to fit skull with handy velcro for snug fit.. I also put a cotton jersey cap on my thin hair (grew up with very thick and curly hair..and skin (discoid lesions on calves) inner 👂,
Now my gut doctor tried antihistamine on my IV in ER for second visit in week.voila! Abdominal pain resolved.
Btw, Lupus is like an Allergy to whatever organ it attacks.
Yep I am actually allergic to my Brain.
My Mind is just "sharp as a tack" as the hosp. Doctors like to jest with me.
Oh, my third 6-day hospitalization was in Seotember. Had very high fevers and got MANY BAGS OF ANTIBIOTICS WHICH THE PULMONARY SPECIALIST THERE DISCUSSED WITH OTHER SPECIALISTS REACHING Lupus of the Lungs too. Interstitial lobes. Scarring.
Looked it up.
Uncurable and progressive...
1st one diagnosed was just a lesion on my forehead, biopsy showed Lupus, but the dermatologist said jesting back in 2009, "well, this won't kill you.
I also have rare Lupus Cerebritis which causes so many uncountable now on about 20 of these brain mris. Contrast shows little foci where veins bled, one wry radiologist termed it "chronic infarct". And that was last year. Hint to women, you can wear those comfortable Coobie bra in the mri!
Bye now, and remember that Thankgiving is the Heart of Prayer.
Family. Friends and looking forward to even More blessings, right around the Space/Time Corner...
It affects my brain every day in my life
5
1
Fatigue everyday
A , B, E
Forgetfulness skin rash an weightloss
B
2
B,C,E
As of last week vmy lupus has spreadedvif vthis rash is lupus
I hate flip top cans!
The hairloss is so upsetting
4 D
I am not sure who this guy is, but let me tell you, these woman just want you to listen, get that smirk off your face. All your mmm or your t yeah , sure comments, they are not helpful. Woman just want you to listen and get it off their heads and hearts. You sound like you are a typical male Dr. Its why most woman go to woman Dr.'s or NP. If you have not had any experience with excruciating or debilitating pain like delivering a baby or head to toe body pain from a major car accident than you can not have empathy for anyone. You can pretend you have, but do you really feel it in your heart what these people are going through? I could not roll out of bed for weeks because of pain...My husband who we have both been in a major accident together, and were stuck in bed for 3 days with impact pain, could not really understand how I was feeling. You have to have had the for real experience of pain to know what these folks are feeling and going through on a day to day experience to even begin to get it. just my humble opinion after 30 years of being misdiagnosed with no help in sight. $$$$$$$$ that's what the medical professionals are all about. Not all, but most. They will give you that pain medicine, but than ask them to ween you off cause its killing you and what I got was, sorry, can't do it.
PLEASE PUT THE HONEY FROM NEW ZEALAND IN YOUR EYES..OVERNIGHT YOUR EYES WILL FEEL WONDERFUL...ITS CALLED MINUKA HONEY !!!!!PLEASE TRUST ME AND TRY IT FOR YOUR DRY PAINFUL SANDY FEELUNG EYES !!!!! AMAZING TREATMENT !!!!
Lupus and Hair Lost ????? And
Hair Lost with Lupus’s ???
Hair loss
Memory loss
Memory. Hair loss 4:32 4:33
B E H
e g j
Can trama to the brain cause Lupus?
G,F,
B,c,d,e,j
Inflammation in the brain
Memory
All
5
1
B
5