I am a 46yr old, black woman with a long history of problems with no real diagnosis/solution. I almost died 3yrs ago after a bout with a major lupus flare (had not been previously diagnosed) but (self diagnosed due to family history of lupus yet doctors would not listen). So here is the back story, im sorry its so long but i need help or I may give up. After fighting with doctors for yrs and getting misdianosed, rediagnosed, undiagnosed just to be told im healthy and should be able to climb mount everest, again to have all my symptoms persist and the misdiagnosis and rediagnosis start all over again. I was even told by some quack doctor my illness was made up and all in my head. He had labelled me as depressed and wanted to start me on depression meds. All the time while prescribing me meds that treated individual symptoms but not a diagnosed illness. I refused those meds all the way. So here I am today finally properly diagnosed and unfortunately on the right meds for the right illness for the rest of my life but Im at a loss and im just simply tired of being ill. After battling with those doctors for years trying to get a definitive diagnosis for why i was always sick, tired and in pain one day 3yrs ago my body finally could take no more and it completely shut down on me and i almost died from major complications associated with this undiagnosed lupus disease. I lost all of my hair and my body was in a terrible state. My skin had lupus legions everywhere including on the bottoms of my feet. My joints and spine were suffering tremendously from the inflammation and pain of it all. My temperature spiked to 106 for days and would not get below 102 (i was literally frying from the inside out), my bp was 210/160 and my resting heart rate was 180 on a good day. I lost the ability to walk or take care of myself, i could barely talk, i didnt need to use the restroom and i didnt desire food or water for the first 9 days i was in the hospital, see my body was transitioning itself to leave here. After 2 weeks in icu and 5 days in the cardiology icu i was diagnosed with discoid and lupus sle. Fast forward to today, now im in a 3 yrs battle that has landed me in the hospital 2 more times since my diagnosis. My hair fell out a second time at yr 2 and now its falling out again almost exactly 3yrs to the date of my last hospital nightmare. I have been trying to wean off steroids now for 2yrs. My doctor has always weaned me slowly. From my initial 60mg daily, I would go dwn 5mg each month until i got to 10mg at that point i would do 1mg per month. I always get down to 4mgs and have withdrawals then a major flare which lands me back in the hospital. This has happened 3 times. I cant seem to get off steroids and my body is suffering the side effects of being on them for so long. Im a fairly lighted skined black woman but lately my skin looks 2 shades lighter than the norm which clearly makes me look almost Caucasian or of mixed race at least. Now dont get offended but thats not normal. I can actually see every vessel thru my thinning and lightening skin complextion. Im starting to look like i have zombie virus veins in my legs and upper torso in my breast, neck and stomach areas. Im tired all the time, i have restless tired heavy legs syndrome, my finger nails and toes nails have began to discolor slightly, i get butterfly rashes all the time, hair loss, lupus brain fog, my big toes hurt all the time, im not behind my eyes i feel like im on the outside of my body, sores in mouth and nose and lupus legions in ears and on skin. I havent been able to hold down a real job in over 3yrs. I havent any children so its hard for me to receive any govt assistance or social security because its only me and you know how that goes. Smdh. I have 2 degrees and 4 certifications and I can barely get out of bed. My social life has completely stopped and im spiritually bankrupt. Im so over it all. I feel like a freak of nature and sometimes the weight of it all breaks me down and tears my spirit up. Does anyone else have this issue and can someone help me. What should i do, where can i turn. God knows im not sure how much more of this i can take, i just dont think my strength is going to last much longer????? I know this post is old and its a stretch ill get any answers but heres to hoping......
Lupus is winning: I am a 46yr old, black woman with... - LUPUS UK
Lupus is winning
Hello. I haven’t a lot I can say to you that will be of much comfort probably but I wanted to reply to your heartfelt plea for help. Despite being a very fair skinned caucasian with semi translucent stretchy, (but dry)skin and having Sjögren’s rather than Lupus, and also having a husband and young adult children - there’s a lot about your post I can still relate to and sympathise with.
It seems to me that the problem is all to do with going undiagnosed for so many years for both of us - and many others here too. If we had been diagnosed and taken seriously when we first showed signs of autoimmunity (in my case when I was a kid) then we wouldn’t have this post traumatic stress disorder surrounding our lives now. It’s a cumulative effect rather than just about having been unmedicated for so long.
If we have a recognised disease with a name then can at least attribute many things to it and get counselling and learn to work our way around it and learn to live with it. But if all our mental and physical energy goes into battling for clinical acknowledgement of these diseases then this inevitably takes a massive toll.
But there are things we still can do such as find communities like this one and grow new shoots through making friends here. If you have a local Lupus group this might help you a lot too? We can still read books, listen to the radio, watch movies, write and draw and use our minds to good effect - even when confined to a hospital bed.
You are clearly bright so could you perhaps find a way of expressing yourself, join a local group and network your way through the awfulness of living with Lupus. If Stephen Hawkins managed to achieve as much as he did over so many years despite MND ,then I certainly feel I can and should manage to achieve some of my ambitions - particularly with some help from my friends here. X
Thanks so much for your kind words of encouragement. It gets so hard to deal with it all some times and I feel like people around me just have no clue. They expect us to be ok, to live and move in the same ways we did before our illness not realizing our conditiin dictates our every move. So getting out and socializing or interacting is hard. Its all we can do at times to drag ourselves out of bed each day and remind ourselves to simply breath in and out. But its amazing people like you who take the time to respond to broken people like me that makes this journey easier to deal with. Im going through it right now but thankfully there are angels along the way to push me when i want to give up or give in. Thanks again
Hey Lupiesteph - replying to people when they post here is just one thing we can do when we start to feel a little less dreadful again. I’m just beginning to emerge from a 3 month long flare up myself so I do know where you’re coming from. Hoping a time will come soon when you can say similar things to others. 🤞🤞🤗
Hi Lupiesteph, my condition is nothing like yours, but I know the feeling of being alone. Sometimes even the smallest task seems impossible...simply cause there is no one to say "its ok, it will pass....hang in there" or "I am here for you".
Your post made me feel your desperation.
Do you have a partner or have extend family support?
I didn't and found Silver Line very helpful. Could call them whenever I was down, they matched me up with a volunteer who called every week and listened to me rant and consoled. Its not the same as a loving partner or close one but it kept me going...they provide other practical help. I believe in God and angels etc but also know life must be easier with loving people round you. Sometimes we are not so lucky but God only knows His plan for us...it could be to save us from more hurt or test our faith, to make us stronger and teach us to rely on Him alone. He does not burden us more than we can bear so you must be very strong.
I live in Brent Council and they have a program called SIBI ...to help combat social isolation and that helps too. I only attend very non strenuous classes simply to have some face to face interaction with other fellow humans. We bring along a snack each and have a mini party and a few laughs whilst learning a new skill.
Where do you live maybe the council has similar stuff.
What are your degrees in? If possible you could join people per hour and get odd jobs to do working from home...I know someone who teaches a language via skype.
If you want a chat send me a private message with your number, I would love to talk to you.
Lots of love xx
Never lose hope! Theres always help. Specially when you least expect it!
Xx
Rubina
Hi rubina786, i wrote you a long response but it didnt post on wall. Did you get it?
No. Thats a shame :(. I have lost a long reply once too as the app hung! Maybe theres a word limit.
Rubina786, I am so happy to hear there are programs out there for health conditions such as ours. Believe it or not I just had another bout with lupus and landed in the hospital. For some odd reason this bout has been super hard because I'm now having problems with my spine and neck areas and the muscles around my shoulders have all tensed up and prevent me from moving normally. I was having strange chest pain, headaches and nausea along with all the same old lupus knockout punches. What a mess. I am just a few days out of the hospital and I'm trying to get back into the swing of things and move through life unfazed by my condition but you all know how that goes. I've realized Ive become the great pretender and it works for everyone else around me but not for me.
Yes, I do have a best friend who watches over me and takes care of me during all of this. She is wonderful but she is also 11yrs younger than me and has dreams and plans of her own. However, she has been tasked with the responsibility of taking care of me or so she thinks. She says that God may have put her in my life to be my caretaker and if that is his plan for this season in her life but she also wants to know and sometimes even comments.... if he has plans for her to be happy doing anything else with her life. I see her growing tired and withdrawing from our relationship and all I can do is watch and wait for that moment when like a thief in the night she is gone. WOW, I feel so guilty and ashamed that a college grad and business owner like me as been reduced to this state and Ive taken another person down with me, I hate to say it but I would not be able to make it without her, My family is little to no help because they think I'm ok without them and it relieves their responsibility of having to take care of me. They see and don't see and its ok with them to think I'm stronger than I really am therefore they can continue to live their lives chasing money and enjoying no responsibility of having to not deal with a sick daughter or sister, so I move on in life pretending that I'm ok as to no burden anyone else and this is a terrible existence. I'm ok though with this because when its all said and done the works they do for the Lord will speak for them in the end, so I don't expect much of them.
Thank you so much for responding to me and sharing your experience and some of the programs that helped you. I wish you could have gotten my 1st response to your comment as this on pales in comparison to that one but I'm so tired right now and in so much pain and the lack of sleep is killing me but I push on, I would love for you to call me sometimes just to say hello or talk about lupus. I don't actually know how to send a private message yet with my contact number and since I live in the lower 48 I really don't know what the time difference is with my zone and yours. I do however want to speak directly with you so send me a private message and maybe I can respond to it. I look forward to hearing from you and may GOD continue to bless and keep you and everyone who is going through this thing called LUPUS
Hi Lupiesteph I have read your post and my heart goes out to you. I have been having frequent headaches, Bladder problems rash on scalp hair loss mouth ulcers and pain over my body. I have been in similar situations where I have been constantly going to doctors and they keep on misdiagnosing me. Even to a point where the head gp told me I am always at the office and wasting nhs and the receptionist will be saying oh it’s me again when I call for appointments. This got me very depressed and embarrassed. I changed doctors office and a lovely young (surprising) gp looked at my symptoms and thought I have an autoimmune disease and she was correct as they did lots of blood works on me . People told me to sue that first doctor because I nearly wanted to harm myself after what he said.
I am saying all of this to say to you do not give up hope. I know you have been through some terrible times and lupus is not an easy thing to go through. It’s a struggle but hang in there and if you are a lady of faith then believe. There is a helpline for people called Good Samaritans I don’t remember the number but you can google it. They will talk to you and listen. Think positive even though it is hard and remember there are others on this site who understand what you are going through and you are not alone.
Some others posters have given some good advice. I know it’s hard a time but never give up hope xNLBC
Hello, its good to hear that you finally got a definitive and real diagnosis for what was causing you so much pain. Its always more liberating to know than to not know. I think the stigmata of undiagnosed health problems looming over us with no one believing in our condition or no real help is more detrimental to our condition than anything. The problem is.....its more beneficial for doctors to prolong our diagnosis and prescribe all types of meds than help us get truly better. Because listen, lets be real the money is not in the cure, its in the medicine and thats sad. Since being sick i have a new found level of resentment for the healthcare system and those that work in it. I could tell you some horror stories of things I've seen and been through since i got sick. But ill reserve me experiences for another time, smh.
Im glad you're ok and i pray you continue to get better and stronger each day for the rest of your life. Thank you so much for responding and lifting me up, i truly needed it because today was a tough day for me. I got really sick last night and was threatening another hospital visit so thanks for the encouraging words. God bless and keep you
I completely get what you are saying. Sometimes you just feel so hopeless and can't see a way out. And it appears like those who should help you just seem to make it worse.
Like you, I can't get off steroids either. That shows me that we need another medication, but the docs are being very slow. Perhaps ask here what the next round of possibilities are, and then request it from the docs (I'm very interested in biologicals, or low dose naltrexone)?
Networks are everything. Also people here have told me PALs is a good place to go to make informal complaints.
I would say hang in there, but sometimes that's not helpful is it? Rest assured we all feel the same miseries, but sometimes through others we can find the help we need. Hope that makes sense, and take care xx
Hello, thanks for the response to my post. I certainly pray that one of us will soon come on here with a long term success story of getting off steroids and stay off with no side effects or problems. Wouldnt that be nice. Here's to hoping. If you ever find an alternative please let us know and vice versa.
Hey, you keep your head up and hang in there. I know eventually it will get better and maybe one day we wont have to rely on meds or doctors. Nonetheless, I pray that God will always provide a hedge of protection around you and his grace and mercy will be sufficient. Thanks again and take care
Thank you, and the same for you xx
Patients can make a complaint to GMC. Lots of people choose not to make a formal complaint as you wouldn't be "liked" (read, "it will hate you and you will be made very uncomfortable") but you won't win anyway. It's a bit like a bad relationship, which is toxic that you know you got to leave. It might look ok or good on the surface, problems are still there, laziness, lack of patients care, it has come to the dead end. I'm currently going through the formal complaint myself. It crossed my mind about going private, but the decent ones don't work on NHS around the nearby regions. I prefer not to travel too far, either.
This type of hospital "school bullying" patients encounter should stop in this day and age. Someone posted on sexism on medical "industry", be it NHS or elsewhere. Someone I have known, the whole family has been mistreated by the hospital. Dad and daughter (24) are both in a real state. Her daughter is suffering from what appears to be Lupus since 6 years old and is on painkillers. GMC should do more. They sometimes do if the nature of complaints is serious. You can look up on their website. Rheumatology logics ("oh you look fine now, go away") is an excuse to get rid of you. New patients bring in money and retaining old patients would cost them. They should be honest about the funding issue. They tend to deny that, but when you speak to other patients who have been through the same situation, they all say, "it's all about money". I'm not saying that's what it is, but it makes you think when so many people voice their problems with their "doctors" not doing enough. On a side note, Lupus is treated very differently by the state(s) abroad. It has the formal recognition that it is a very serious, tricky, often disabling condition (requiring ongoing investigations over a long period/possibly for life) in some countries. In this country, a lot of patients don't have that "protection/safety net". As other posters commented, I agree, there's nothing worse than battling with doctors when you are very ill with a condition like Lupus.
Wow, you summed that up perfectly. The real issue is not in trying to cure diseases, the big deal is in prescribing medicines that dont work or that have more side effects than the disease itself because there is no money in curing an illness. The money is in the medicines!!! Im sorry to hear about your friend and I hope it all works out. Thank you so much for the information and for responding. Take care
So sorry you’re going through such a tough time 🙁 You will find lots of people on here who have felt like you do now but also lots of people who have come through the other side and either had periods of remission or found ways to gain acceptance.
As Twitchy says though, it’s even harder when you’ve spent years fighting for a diagnosis and feeling disbelieved when you’re so ill.
Do you have a good rheumatologist or GP now? Can you get an emergency appointment? If you tell them honestly how bad you feel physically and mentally then hopefully they can sort out the medications because there is so much that can be done.
As treetops said there are lots of options for drugs and when they find the right ones you will feel better. I have had a very bad year lupus wise, high dose steroids, various immunosuppressants, had biological treatment about 6 weeks ago and suddenly feel much better. I think we all often have this fear of steroids and aim to get off them as soon as we can but they are life saving in many cases and sometimes it’s a case of accepting them (took me ages and I still would rather not take them!). I’m on 20mg and have been told that I’m very unlikely to be on less than 10mg forever.
Please remember there are people to help. It’s so hard when you feel so bad to get that help but if tell your medical team how bad you feel they need to try something and there are always people on here who understand and are ready to listen.
It might not feel like it but sometimes a period of the lupus getting much better is just around the corner- don’t give up hope
Xx
Hello melba1, you are absolutely right in everything you said. But its so hard to keep getting up everyday when there is so much pain in every part of your body and your brain feels like it may explode. I never knew fingernails/toenails or the ends of the hairs on your head could hurt so badly.
I initially wrote this post because i was feeling hopeless and completely dejected. Im a strong person normally but this disease has broken me down. It appears to me the doctors in my area are so care free with the lives of their patients. We depend on them and trust them to help us and enact some form of healing within us by doing what we thought they loved doing. But that is not the case in most instances and we are left to suffer through the pain of the wait to get to someone who took their doctor's oath serious and actually love what they do. I wrote this post because im at a place in my life where my strength may not hold up and the hopelessness of living with lupus is getting harder each day. Some days i stay in bed all day because i dont want to face another day sick and in pain. Then you couple that with everyday issues or financial woes and you have a cocktail of "oh no". And thats a nice way of putting it.
Melba1, i just want to be happy again. I want to be physically active again, i want to be able to go and move like someone who is alive and the unfortunate thing about this is my heart desires it, my head thinks about it all the time but my body kills the vibe everyday for the last 3 yrs. Thats a hard place to be in for so long and I cry all the time. It hurts me to remember the times when i was a professional athlete or a corporate employee with goals and filled with lots of hope. To go from that to a bed bound veggie is so hard to cope with.
When you said you may be on steroids for the rest of your life I swallowed hard and felt my heart drop into my shoes. I pray that isnt so for you and that your body heals enough for you to eventually not need steroids. My doctors never told me i could be on steroids life long but Ive had the feeling I may never get under 8 to 10mg of that dread awful drug that obviously maintains my broken body. Lord help us!!!!
Anyway, its so good to know that you are doing better and I pray you continue to get better daily. May God bless you from the top of your head to the bottoms of you feet. And may his grace cover you always. Thanks again for sharing your thoughts and love.
Hi, so sorry your feeling so bad and doctors have given you such a hard time. I can totally relate to your feeling of despair.
I also have Sjogrens, auto immune hepatitis, Fibromyalgia as well as lupus, and it can been totally exhausting and would destroying st times.
Just lately I have changed my diet completely and eat only plant based foods, no caffeine, no sugar and no Gluten. Also I’ve been listening a lot to a guy called Neville Goddard, who really is an inspiration. He is from the 1930s and teaches similar to law of attraction backed up by bible scriptures. He is worth a listen.
Also I would recommend watching ‘ What the Health’ documentary on YouTube. It will open your eyes to diet and give you hope that things can get better......
I’m around a lot of the time so your more than welcome to keep in touch.
I have just got a degree in acupuncture and have set up a clinic room at home (with the help of friends) so I will be working from home.
I do get disability benefits but want to do some work when I can.
If you can get someone who can help with benefits it will take some of the strain of you. If your in the UK, fightback are brilliant.
Thinking of you. Lots of love 💗
Thanks for responding. You are absolutely right, diet is everything and im slowly changing mine but its a work in progress. Health fanatics claim religiously that if you want to be healthy and happy you should eat things that are alive, not dead. The funny thing is all my life ive only eaten boneless skinless white meat chicken and turkey breast along with wild alaskan salmon and talapia. Those are the only forms of animal protein i eat. Of course for a full course meal I also eat lots of carbs and starches which are terrible but my real weakness is sweets and junk foods. Therefore I have some work to do.
I have watched "what the health" and it was an amazing documentary on how to eat well and live better. I think i may have to revisit the documentary again to help regain my focus.
Im so glad I found you guys in this forum because im feeling a little dejected and im at my wits end. Im hoping things get better soon but even if they dont im a fighter.
Thank you to everyone who has liked or responded to my post. You guys ROCK!!!
Hello everyone, I pray you all are well and doing better with each passing day. I solicit prayers from my fellow sufferers and survivors because I just recently got out of the hospital and I'm going through a rough time as I'm in the middle of a flare right now. Every fiber of my being is in pain and the restless nights are zapping every ounce of my low energy from me. I cant help but to think, "LORD GOD, WHEN WILL THIS EVER END AND WHY CANT I JUST FIND SOME MEASURE OF HAPPINESS WITHIN THIS LIFE ANYMORE?" This is what I keep asking Jehovah God and unfortunately I'm not getting any answers and its driving me insane. I just want to be free of the pain and long suffering, I want to be able to go and come throughout the course of a day without getting sick or feeling ill or having a flare. I want my skin to not hurt or those red spots to stop appearing, I want my hair to stop falling out and the biggest desire yet it to not have to take STEROIDS ever again or to get off plaquenil, gabapentin, tramadol, iron infusions, vitamin D and B12 supplements due to deficiencies. I'm not asking much, I just want to be happy and healthy again. I often wonder what I did so badly in my life, this life, to deserve this plague. Why does it appear God has turned his back on me, one of his most faithful servants and missionaries. I'm going through a spiritual battle right now that sometimes I think the devil is winning, But I digress....I guess it could be worse and I should be thankful that I'm still able to get a few things right before my next journey after life on this side of glory. So, please all, forgive me for ranting and maybe not seeing the big picture. I just get so lost in the pain and conditions that lupus causes I forget that it could be worse and things could be far different for me.
I pray though that one day God will look down on me and say, it is well with your soul and you are healed until then I guess this will be my cross to bare and I am ok with that because I know one day I will trade this old rugged cross in for a crown!!!!
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