Living with someone with Lupus

My wife has just been diagnosed with Lupus so this is my account of our history and the build up of symptoms leading up to the diagnosis.

I am writing it as i haven't found anyone else's account of 'living with someone with Lupus.

I have been with my wife for 13 years and ever since we met she has always loved to sleep, literally sleeping 14 hours waking up for 2 hours then asleep again, at first i thought this was because i let her sleep unlike her parents who always got her up early in the morning and didn't allow sleep in the day. (she was studying at university by the way, hence she 'could' sleep all day).

But as time went by she started to say that no matter how much sleep she has she is still exhausted.

And so it all starts:

Countless trips to the doctors, to finally be told 'You have ME' oh and this isn't really recognised and there is no treatment....GREAT. The first of many useful tips and advise from our wonderful 'you've got a virus' GP's. (that is what they say to all patients isn't it?.

Then all of a sudden she would be fine and we would get on with life, then a couple of months later back to square one, tired, black under her eyes (like a panda.

We tried regular massages with a dear friend of ours who has now passed on. He would always recommend Tahitian Noni juice for its cleansing and anti-inflammatory properties, but my wife didn't commit to it and at £30 per bottle was quite expensive

Through it all she would bleed heavily at that time of the month, pretty much like she'd been stabbed and way way way over the 'normal' limit. So back to the Doctors where they put her on every different contraceptive pill, none would work!

During this time my wife through dogged determination managed to get a degree and various other qualifications and have a successful career in the civil service - how? What can i say she is the most determined person i know when she puts her mind to something.

I have to say though, her career hasn't been without its problems with her health, time off work for symptoms that no Doctor could diagnose to any level of understanding for her colleagues, but she has pushed through and been the top performer in any work task.

So we are at 8 years together now and all the time the health problems have come and gone and no Doctor has given any positive answers, more the feeling she is a hypercondriac.

In fact everyone around us, family, close friends were all tutting and raising eyebrows at me when they would ask 'how's your wife'...not too good would be the reply. I would stop there when you could see they simply were not interested, after all the Doctors haven't diagnosed anything.

During the 8th year, my wife got shingles on her neck the first time, then her eyes, the her side, then her neck again, basically 8 times in 18 months!!

what do the Doctors say? That's unusual, damn right it is, so what do they do? Nothing!!! the great NHS service

Then out of the blue my wife is pregnant, during which she got hyperemesis during pregnancy, it is a 9 month struggle but she gave birth to a beautiful baby girl, after the birth my wife was actually ok for the longest period of time ever since we had been together!! life was good

9 months later after giving birth she was pregnant again, again she got hyperemesis, again a big struggle especially this time as we had a very active child.

She gave birth to a beautiful baby boy 9 months later, THIS IS WHERE THE FUN STARTS!!

The hyperemesis symptoms didn't seem to want to go away, she was permanently shattered beyond belief, and had pains on her right hand side under the rib cage, but still she stuggled on and finally went back to work - god knows how!

Back to the Doctors and they do every blood test they can, all come back perfect. (it must be in your head speech comes out) Brilliant another no-believer!

The rib pain got worse, her hands around the knuckles would crack open in an instant and then heal just as quickly (like something out of a movie), she had shoulder pains, so finally a Doctor sent her to a specialist consultant.

He gave her a steroid injection in her shoulder as a muscle was spasming, sent her for a scan on the rib cage pain.

We chased the scan results to be told she had been discharged! must be ok we thought.

8 months after the scan and with the pain increasing in her rib cage, she went back to the doctors, gave her pain relief medication and sent her on her way, still the pain gets worse, back into the doctors, this time insisting something is wrong and low and behold the scan 8 months ago revealed gallstones!!!! (a letter had been sent to the local doctor which they missed and also she hadn't been discharged by the consultant, this was the secretarys mistake!)

Anyway what do the doctors do? stronger pain relief and 'see how things go'. it gets worse and 2 trips to A and E with the pain...more pain killers.. (at this point my wife is verging on becoming dependant on pain killers just like a full blown drug addict.

Finally the last visit to a proper specialist they agree to take out the gallbladder...6 weeks later!! they finally operate and yes the gallbladder was rotten!!

The pain is now gone and she feels better...for now

Next she goes to see the Consultant for a checkup and she tells him about her hands and some additional pains in her rib cage...he tells her they'll see how she goes over the next 12 months, a few days later her hair starts to fall out (only a little bit) so she calls the consultant and he orders blood tests and they come back with raised ANA levels (think thats right) and something else which is low a clear sign of Systemic LUPUS.

A letter is sent to confirm....is that it??? a letter, my wife has just been diagnosed with an incurable illness that can only be managed and we get a letter!! to say we are furious is an understatement, although on the flip side we now have a name for the illness that is recognised so to all those who didn't believe she was ill, we can now say..in your face she was really ill, although that sounds wrong..yes my wife is ill, it has been a long and winding road to get the diagnosis.

So where now? it is one week later from the news and we are completely lost. Knowing my wife will be on and off ill for the rest of her days, knowing that her past illnesses were the lead up to this conclusion has thrown me. I always thought there would be a fix to the illness, but knowing there isn't is hard. We have 2 young children and they are hard work.

My wife is really struggling to accept the illness and i feel i have to give pep talks to motivate her into finding some kind of cure... i know there isn't but i am a positive person and have read things about having a gluten free diet, cutting out dairy products as these can reduces inflammation and a lot of symptoms are inflammation with lupus. I want her to accept and change her eating habits right now to see if it helps, while my wife is trying to accept that she Lupus while being in the middle of a flare up.

There is no support locally, no one we know has the illness, the doctors are absolutely useless, where do we go what do we do??

This is a life changing diagnosis even though we have been living with the symptoms on and off for 13 years, but that was different as we always though she would get better.

My wife starts some immune suppressant medication next week so we will see what happens and try and make small life changes to improve life in general.

I realise i have droned on about this, but this is like my therapy. I have needed to get this off my chest as who wants to listen to me go on about this except perhaps like minded suffers and carers and other people who live with others with lupus.

I would like to hear from anyone else who's partner has this and how they deal with it.

I would also like to hear about success stories as there seems to be a lot of negative stories...understandable but surely someone has had all the symptoms, been diagnosed and come through the other side either a better person, fitter and healthier ????

29 Replies

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  • Hi livingthedream,

    what an awful experience you & your wife have been through.

    I would like to say that your wife is truly blessed to have such a wonderful caring husband in her life.

    Lupus is a terrible illness (as you know) & an awful lot of partners/husbands/wives etc never can understand & sometimes don't even want to try & understand.

    All I can say & it's not much consolation I know, is that at least now you know what your dealing with.

    I wish you both well & hope it becomes easier to deal with

    Trace

  • Thank you and i appreciate your comments

    have you come across any 'success' stories, i am trying to find all of them and then create a website based on them so that people who suffer with Lupus can see every possible positive angle to draw some strength from

    as yet i have only found one after lots and lots of searching

  • Hi

    Reading your Blog was like reading my own story of how I was diagnosed with SLE 2 half years ago. I have not had a flare in about 9 months and I feel quite good, but I know tomorrow that can change.I feel that if you are having a good day make the most of it, I will never be the same as I was 2 half years ago and I am still trying to come to terms with this, try to do more than I can.My best move was to cut my hours of work from 34hrs to 12hrs which I did 6months ago. It's just enough to keep the brain ticking and gives me a reason to go out of the door. My Husband trys to motavate me sometimes it works sometimes it dose'nt and I get angry I need to be left alone. It is not easy living with this crap SLE. Will I ever learn to live with this, I don't know but I do take one day at a time and when I have good day's boy I have a good time. I hope this has helped and I wish you and your wife lots of good days :)

  • Hi your story is very like mine,I was diagnosed with M.E over 20yrs ago then had shingles, then glandular Fever, constantly so unwell. told nothing could be done. I was also rushed into hospital 18mnths ago with what they thought was gallstones,the pain l had in my ribs was so bad. Finally after being so ill for so long, I had constant blood test all the way through the a blood test revealed SLE. I was started on Hydroxychloroquine. and steroids over a year ago, and its only the last month l am beginning to feel some benefit from these. The severe joint pain has not gone but calmed and l now get some GOOD DAYS too. so although this is a horrid illness there are some good days to follow. I just live one day at a time, and like Bettie l really enjoy the good ones before the bad days come back. Good luck with your new medication hope it kicks in fast fao you x.

  • ur wife is very lucky 2 hav u by her side ...

    i was diagnosed with sle lupus 2yrs ago but hav lived with the symptoms as long as i can remember ..

    im in pain every day n my flare ups r becomin more & more regular...i really cant remember the last time i wasnt in pain

    im 36 & i hav 3 children my middle child has adhd & aspergers...its very draining....im so exhausted every day & cry myself 2 sleep most nites

    i know wot u mean about havin no one 2 talk 2 about lupus ...i dont no anyone with it ...but i do hav amazin friends that help me daily & with out them i would b lost

    i wish u & ur wife well x

  • I really appreciate the comments guys its nice to know there are sympathetic ears out there,

    i don't know why but i seemed obsessed with wanting to find some form of non medicated way to help my wife, rather than relying on pills all the time - i understand some will be essential to knock back her immune system.

    I seem to recall hearing on the radio about a cancer patient that having being given a terminal prognosis from the doctor, embarked on a carrot juice only diet and managed to beat the cancer - this is extreme but if it works it works.

    also the comedian Gina Yashere says she has beat the symptoms with a strict diet: this is the link if we are allowed to post here

    dailymail.co.uk/health/arti...

    also, i found this statement on another website:

    Seeing the Light: People with autoimmune diseases benefit greatly from a vegan, alkaline diet; the avoidance of food allergens (casein, gluten, and yeast are common offenders); the avoidance of saturated fats, attention to proper digestion; and heavy metal detoxification.

    this is the link:

    limeincoconut.com/prevent_a...

    apologies if the link does not show - not sure if i can use them here

    has anyone been advised or tried different diets? if so have they helped in any way?

    I realise with the nature of the illness most of you reading this will probably be exhausted so it needs someone to fight your corner who is not suffering from it, hence my determination to find as many positive and possible 'cures'

    P.S

    Also, one thing my wife noticed today is that as it has got dark outside she feels better....we have always said she is like a vampire, coming alert at night. But i understand this is another symptom, exposure to sunlight

  • Hi Livingthedream,

    I'm so sorry to hear that you and your wife have gone through so much trying to get a diagnosis of lupus.

    Diet has been known to reduce symptoms in some people, but everybody with lupus experiences it differently and so what might work for some people, may not work for others. I must say that at present there is no 'cure' for lupus, like Gina Yashere claims to have achieved. Diet may help to reduce symptoms and it is possible for lupus to go into remission, but it cannot currently be cured.

    As for help, have you become a member of LUPUS UK? We have many helpful resources as well as regional support groups. Also, we just released a new DVD and handbook for people that have recently been diagnosed with lupus. Many people and their families have found it usefful. Both are available together for £2 postage and packing from National Office.

    If there is anything that we can do to help, please just let us know.

  • Yes, I love the cloudy and rainy day, it's cooler down and I can go shopping or be outside a little. I have lupus a year ago and I understand what going on with your wife. It takes time but time will help her to cope with it, the sooner the better. Accepted and make few changes to control the symptoms, she'll feel the different. I had been tried different diet, but eat more fish than meat, more fruits and vegetables, taking rest often, reduce stress, meditation, breathing, easy exercise, drink lots of water and stay out of the sun, using sunblock everyday would help, that is one part. Other part she needs to contact with her specialist often for blood test and incase there is any new symptoms occur.

    I think your part would be tougher, because you have to do more and try to comfort your wife at the same time, but you both will cope with it and will find it isn't so hard likes now. She is very lucky to having you by her side though.

    Good Luck

  • Hi there

    I have had a go at various diets over the years and can't say that they have made any difference to my symptoms. I would never take a decision to stop medication in favour of a diet, although I think there is certainly no harm in trying out alternatives alongside my treatment. In my case, and for many others, an essential element in "recovery" is establishing a good rapport with the specialist consultant. This allows the sufferer to work towards a treatment plan that is works for them. It can take time to get it right, but the consultant is often best person to advise on the pro's and con's of withdrawing or witholding treatment over alternative methods.

    Your wife is an incredible lady, very determined to live life to the full and I suspect that she will draw on this determination again as she comes to terms with her diagnosis. You both may need time to understand what having a diagnosis means. Like you say, it can be like a double edged sword, on the one hand, you have an explaination for symptoms, like fatigue, light sensitivity etc., but you wonder what the future holds.

    Your positive attitude is commendable and you are obviously a very caring husband. It's great to see you on the site, showing a real interest in the desease. There are plenty of positives to draw on, in fact, I, like many other's here could probably write the book. I am very determined to "overcome" the adversites of the illness until such time as a "cure" is found and look fowaard to hearing more on your findings.

    Good luck to you bothx

  • Hi livingthedream

    Ive tried various diets to try & beat it, I think it may well depend on how severe the Lupus is, ie, SLE/DLE, I unfortunatly have had no change to my Lupus other than Ive deterioated, especially in the last two years, having had Pneumonia last year & a heart valve replacement this year, Ive also tried stopping the meds but then I get even worse.

    Never give up trying to find what works for you both

    Best wishes Trace

  • Thanks again for the responses and feedback

    I am on a mission at the minute and agree diet must work in conjunction with a consultant

    I will keep posting information on this site with my findings for what works and doesn't in assisting my wife who will be taking plaquinel from Tuesday next week.

    I am determined to make my wife a 'good' luck story

    We haven't got into the diet part yet but this may help some of you who suffer from Nausea as my wife always does.

    I bought a book called The funky Fresh Juice book last week as there are various juices that provide all types of 'cures' and just general supplements using vegetables and fruit

    Whilst trying to convince my wife that this book could help in some way we found a powershot called the 'Ginger Shot': 1/2 an apple and a 5cm chunk of ginger put through a juicer and then drink it - 5 minutes later the nausea had completely gone - it is 2 hours later and she is still fine

    the bit i like about it is it is completely natural - and of course worked.

    Like i said mission on

    I will keep posting more info as it happens - hope this can help

  • Iam sorry to hear about all the difficult times you and your wife have had..but the two of you seem to be very strong individuals hope it gets better at least now you know what you are up against not that it makes it easier...not sure where you live I am in the US. I was diagnosed with Lupus 2 yrs ago and still have a very difficult time accepting it. I was prescribed Hydroxycloroquine but it was affecting my eyes..had to stop taking it a month ago Specialist prescribed Methosdraxate but side effects also sound awful.. so I haven't taken any meds for a month have not tried the MTX I was having bad headaches and vomiting couple weeks back thank God I haven't experienced much pain before diagnosis my complain was brittle and thinning hair I just have achy hands especially in the morning I do excercise at least 5 times a week so maybe that helps, but anymore Iam always tired but that doesn't compare to being in pain..I will have to go back to my Dr..and see what is next I also refuse to take steroids..but interesting enough I just read that your wife is using ginger I think it helps I used it a lot put it in fruit shakes and lately have been making tea with it and drink couple glasses a day..keep in fridge and serve it cold, it suppose to be a great anti inflammatory. I will keep commenting on how things are going even though when I read all difficult times people have with Lupus I realize that I have been fortunate so far. Best of luck to you and your wife I will be interested of how her treatment works..blessings to you both and best of luck on this difficult journey.

    Karmin

  • Reading your blob is like reading my own,I have had Lupus 20+years and it took me at least a year to get my head around it,but you do.!!

    There are no Miracle cures out there at the moment but research is going on and I pray 1 day there will be.(Be very careful in your Quest that you are not giving her any thing to trigger a flare) but a healthy diet does help and in that there is no doubt) so please only Natural products,as you have been doing,

    there also is exercise like Yoga ect.

    I do not know what area you are from but Lupus has contacts in most that you can chat to.

    There is a DVD :So you have Lupus.:This takes about research,treatments lifestyle,and Managing your symptoms. which you can buy at Lupus U/K.

    I wish you all the best and look forward to seeing how you go.

    Love & Sunshine

    Jan

  • Hi livingthedream .... well done to both of you for keeping your ship together on course! I know it has been said in earlier posts, but at least you now know what you are dealing with even though it is not always definitive. I found learning to live with yourself and 'manage' the runnings of your body a great help. Body mind and spirit.

    A healthy diet is great for 'ordinary' people and I follow as best I can. The body does not need the introduction of adulterated foods for the immune system to deal with. For me that is just something else to deal with so do try to maintain a balanced diet and select nutritious foods.

    Keeping stress free is another big help for me. Easier said than done but learning stress managing techniques such as yoga, meditation and just perception has helped. There is plenty of information about the effects of stress on the human body, physically, mentally and emotionally.

    My story? Well I had all the pre cursors as a child. I was always sick. UV sensitivity was a big problem and no one understood it. That is one which does actively remain with me today, but I manage it - indoors and out. I have one son and a husband who, like you, is always watching my back and actively supporting me. I have been on the ups and downs on the Lupus train and came close to a couple of derailments! By the way, my earliest memory was 46 years ago. My diagnosis was 36 years ago.

    I am now training to be a fitness instructor. I still can't believe it either.

    Sending you all love & light

    x

  • Hi there,

    you sound such a supportive partner, your wife is very lucky to have you. Fortunately I have a rock like you and it makes things much easier every day. I have never found any specific diets that work or leaving out specific food groups to be helpful, but would be interested if you find more material on it! Nausea in the mornings is terrible and saying that brekkie is the most important meal doesnt really matter when you feel you really cant stomach anything! You might like to read this article dorsetlupus.com/gaga_articl..., i was asked to do an interview for the daily mail about living with lupus. Lupus is such a horrible thing to have and every single person on here battles it in their own way, i am very lucky not to have too many symptoms at the moment and am grumbling along. Have you or your wife spoken to the Lupus UK contacts - there are a couple of carers and men available to talk to as well as women with lupus who are available to talk to. It would be worth your while getting in touch with your local group and meeting people near you.

  • Hello, Just wanted to say that you sound like a fantastic husband and your wife is lucky to have you around. Do get in touch with Lupus UK and read all you can about lupus but only up-to-date stuff - the Graham Hughes book ( I think that's available from them) is really helpful as a starter.

    I wouldn't worry too much about diets right now - just try eating heathily; there is a lot of talk about diets in lupus but very little hard evidence that they really work. Peppermint tea/ginger can help with nausea and I take Omega 3 (but never really noticed much effect); however I have found zinc and vitamin C do seem to ward off colds.

    If/when she starts Plaquenil, that needs to be taken after food and it can take a long time to work (several months).

    It is tough to have an illness when you don't know anyone else who has it; so do join a local group or there are some on Facebook that are very supportive (and can be humorous) as well.

    Hope that helps - take care! x

  • Hi to all of you that have posted comments, they are very encouraging and positive

    My wife is starting to change small things about her diet, nothing dramatic but more healthier (it wasn't that bad to start with)

    and i bought a wii fit yesterday as like FruitLoop i was thinking that maybe doing yoga stretches could help the body and mind

    We have joined the Lupus Trust and i am going to see if i can dust off the running shoes and do something for Lupus charity

    So we'll see what happens down the road - fingers crossed we'll get to grips with Lupus to some degree

    Thanks again!!

  • Hi livingthedream

    Reading about your wife was like reading about my mum who i sadly lost recently,i myself am not a lupus sufferer,mum was diagnosed with lupus in 1998 along with sarcoidosis and non hodgkins lymphoma,mum was given predislone for her lupus but,i don,t know how long she took it for but she was taken of it i think that was mums decision to come of it because her body for some reason disagreed with most meds but she managed the lupus herself,she did have her good days and bad days,she was a very private person and did,nt discuss her her health problems with anyone,not even family i,m only just finding out what she went through because she left a diary,just finished reading it very heartbreaking indeed i just wish she,d told family,i,m crying again as i am typing this,i,ll find out how she managed to control sle for so long and i will let you know,like you i am not a lupus sufferer but while i am still fit enough and for as long as a can i,m fundraising for lupus uk,recently done a sponsored walk raising over two thousand pounds got another one planned for march take care x

  • hi catb, that is very sad and i sympathise with you

    My mum has Sjogren's syndrome and a whole raft of other conditions and we are pretty close yet i only found out how bad some of the conditions are the other week, yet she had been 'carrying' them for 5 years!

    She said that is how she was brought up - to just get on with it, which is probably not that bad a mind set to have at times.

    Good luck with the charity work!

  • Hi livingthedream,

    Let me start by first saying how sorry I am to hear of your suffering, both you and your wife. She seems like an incredibly strong woman, and is very blessed to have a man like you in her life.

    I was diagnosed with SLE, APS, CNS and DLE when I was 16, and have, just like everyone else who suffers with an autoimmune disease, had my ups and downs for the past 7 years. I see that you are particularly interested in dietary alterations? The little advice I can give you, is that if your wife suffers with joint and muscle pain, then try cutting out foods that contain potassium, such as bananas and strawberries. They may, albeit be yummy, but both myself and my grandmother, who suffers with rheumatoid arthritis (another autoimmune disease as you may well know), have found this extremely beneficial in stopping the joint pain. It is also beneficial to lupus patients who have problems with kidney disease (usually the first organ to be attacked by lupus), as high potassium levels can have bad effects on the kidneys too.

    I know that it is difficult to find a positive story amongst all the pain and suffering surrounding this disease, however, what gets me through every day is knowing that things could always be just a little bit worse. To live in the moment, to enjoy every minute with your family. Both you and your wife will come to realise in time, that although this is an incurable, debilitating and progressive disease, it can also be a little blessing in disguise. One that makes you live your life in the moment, to enjoy every single second like it's your last. To live your life to the fullest. One of the best and most inspiring things I have ever read is this fantastic little one-liner:

    "You know life hasn't been lived to the fullest when you're placed into your grave looking pristine and perfect. It's been lived properly when you roll in thinking "What a Ride!""

    I really wish both you and your family all the best

    KarlyT

  • Please consult your GP, consultant or a qualified nutritionist before cutting something out of your diet. Some things may have negative effects on the body, but sometimes they can also be essential to remain healthy and avoid malnutrition.

  • Hi All,

    Ok here is an update on my wife,

    she has spent 5 days in the cornary care unit - the staff there were amazing,

    Her ECG was showing signs of a heart attack, so they gave her dozens of blood tests and all came back showing nothing, then a CT scan, Angiogram.

    Her heart was in perfect condition, which is comforting so the conclusion is that the Lupus, is causing the arteries to spasm, which was evident when they put the dye in the vessles around the heart during the anogiogram

    Diagnosis, Unstable Angina, with secondary diagnosis of Lupus, Fybromyalgia and Raynaud's.

    My wife is now out of hospital and on varying medication for angina, but i have to say she has not looked this well in ages, and her general mood is great.

    And now as we think back it may have been something that had gone on for sometime.

    She has always been very tired and had cold feet and hands since we have been together, then last night for the very first time, her hands felt warm and 'alive' and she felt energetic.

    Its not until things are 'normal' that you realise just how bad it was.

    Basically if the arteries had been spasming before without anyone realising it, then the heart isn't pumping the blood around the body effectively enough, hence fatigue will be inevitable, along with the general feeling of being unwell.

    We will now see what the following weeks bring - i will keep you updated.

    Just one more thing, during my wifes visits to the doctors she would say to them, 'because i feel unwell, i feel depressed,' they would always say, 'No, you feel ill because you are depressed.'

    Well she is feeling well at the minute and all feeling of depression is gone! its amazing really that a lot of doctors just do not listen and instead will pump you full of anti-depressants without actually getting to the root cause. (my wife was on prozac for nearly 3 years!)

    So basically, listen to your body, and do not let anyone, including doctors and consultant, loved ones, friends and family tell you any different.

    Summon up the energy and fight to get the right diagnosis!

  • I only just joined this forum, hence why am just commenting on your blog. I want to give you some good news. My sister and I have had lupus for over 10 years. My sister had a major flare like 10years ago, lost a pregnancy. She was put on immuno suppressants and steroids and all. The good news is, she has been in total remission for about 7years and only on hydroxy chloroquine for about 5years. And has 2 children and a most supportive husband.

    Unfortunately, My lupus is the complete opposite of hers. and my most caring and supportive husband of 10years, left me recently.

    We are very religious people, we draw our strength and courage from God. Our faith has kept us going and we believe things would be just fine.

    So please don't lose hope, watch, the suppressants can work wonders. I wish you the very best. May God give you the strength to carry on.

  • Hello LivingTheDream,

    How is your wife doing? I notice there has been no activity here for a couple of years. How are you doing? I'm hoping you are both well and have not become disheartened by this horrible disease.

    I've had Lupus 20+ years, was told I was depressed because the doctors refused to believe things like ME and SLE existed. Finally, after being just about crippled by this condition for almost 7 years, a doctor experienced in auto-immune diseases did the blood test for Lupus and my ANA, anti-DNA, C3 and C4 all came back with results that are consistent with Lupus. He put me on Prednisone to suppress the immune system, thinking I only needed to be on it for maybe 6 months, but the Lupus would not go into remission for almost 2 years. Then it took me almost another year to be weaned off this drug. I hated it as I was prone to falling ill with my immune system suppressed and I bloated like a whale. Even 3 years after stopping the immuno suppressant, the bloating hadn't quite all gone.

    I had also spent thousands on all kinds of herbal supplements and anything I could get my hands on that might help get me back to the life I used to lead. The more I did, the more depressed I got, until I changed my whole attitude. When I did a reality check and decided that living with Lupus is my new reality, things got better. It can go into remission, but you never know when it will come back. Also, I can never live the hectic, world conquering lifestyle I used to live, so having accepted that and deciding to live life to the fullest WITH the Lupus, got me out of the depression. Up till then, I was always waiting to rid myself of the Lupus and get back to my old lifestyle. Accepting I now have limitations and prepared to enjoy my life within those parameters, has helped a lot.

    Just some notes of what I've done that may or may not have helped:

    Herbal Supplements:

    Many of the herbal supplements I took may have helped with the symptoms, but not significantly enough that I had noticed. They certainly did not help with the Lupus itself.

    Diet:

    I've always had a really good diet. Even as a child I preferred to munch on a tomato or apple, rather than have a candy or crisps. However, when I had a demanding job that required me to work 14-18 hours/day and be on the road for 10, I resorted to grabbing stuff off a store shelf and eating on the run (if I even got a chance to eat). Somehow, I felt this may have contributed to stress on my body not getting what it needs to function properly and sent my immune system into overdrive, plus the fact I may have had remnants of a virus in my body that caused rheumatic fever. Being aware of this, I've gone back to eating in a way to maximize the nutrition I put into my system. Without getting too technical, half my plate would consist of vegetables, I may have half a cup of brown rice/legume/potato and one deck card size unprocessed meat. I would eat at least 3 different types of vegetables and will include at least one cup leafy green and at least one coloured vegetable (carrot, red pepper, squash etc). My aim is for at least 2.5 cups of fruits and vegetables every day. I would usually munch on fruit and nuts in between mealsi. I recently bought a Nutribullet and love drinking vegetable/fruit juices that are blends that include the fibre. So much easier when there is no time to prepare a meal. I generally do not eat any processed foods, but I will enjoy a little something once/twice in a month. I've also reduced my tea/coffee consumption to half a cup after meals and drink only water the rest of the day.

    Exercise:

    To be honest, I've not exercised regularly in 20 years. It's a travesty, considering I was a really good athlete and trained at least 6 days a week. I guess over the years I've just gotten used to not exercising, but I believe mild exercise at least should be attempted. Not to say I'm not at all active ...... I do physical labour as I love renovations and construction.

    Medications:

    I take Synthroid prescibed by my doctor, for Hypothyroidism. In the beginning, before my Lupus was diagnosed, I was diagnosed with an underactive Thyroid. We celebrated then too, thinking this was the reason for my fatigue etc. Initially the medication did help. It took me a few months to realize it helped, but I did had a problem.

    Moducare:

    As I documented above, I had been put onto an immuno suppressant until the Lupus went into remission. I did not want to go back onto this when it flared up again, and decided to try the Moducare first. I had been suffering from a particular type of joint pain I've identified as the Lupus being active and not just inflammation or some other arthritic type pain. It feels like ants have gotten into that joint and are tearing the tissues inside, with sharp pain accompanying every rip of every bite. I was able to do this because I monitored my symptoms with every blood test I did and I could basically tell the doctor what I thought the blood results would be, based on how before the tests were done. Again, I digress. Sorry. Coming back to the Moducare - after suffering almost 4 months with the joint pains, besides the other symptoms, I decided to try the Moducare. I was amazed it took just a few days to feel some kind of response and a couple of weeks for everything to settle. Since then, I've been taking Moducare to nip the flare ups in the bud. Sometimes, if I've ignored a flare up for too long or failed to recognize it, I will take the Moducare for a whole month before the Lupus will go into remission. Take note however, that I've found not all brands are equal. One brand (I think it is Vivitas) did not work as well as some of the others. There is one brand that worked particularly well but I cannot remember the name right now. I think I've tried 4 different brands.

    Current Status:

    Fortunately, my Lupus has not flared up too regularly and when it does, I've had good success with the Moducare putting it back in remission really fast. Basically, I focus on trying to prevent my immune system from over reacting to anything, so try to avoid getting sick and just live a lifestyle that helps to support the healthiest body possible i.e. give it the nutrition it needs and reducing as much of the stressors it can do without e.g. processed foods, chemicals in food and the environment, self inflicted stresses due to work or daily living etc. I don't know if I'll ever stave off the Lupus forever, but I'm hoping that whatever I'm doing now helps. My Lupus seems to strike at my heart, kidneys, tendons and joints. Most recent which I've never had before, is skin tissue. I would never had identified this as the Lupus, had I not heard of it affecting someone else. I also seem to get the rash on my face before any of the other symptoms become prevalent, so when I see the spots on my face it takes me a while to realize the Lupus is flaring up. So my final thought to you is - I don't know if you can ever CURE Lupus, but you can find ways to keep your immune system from over reacting and so manage your Lupus. I've been fortunate that what I do seems to help me and I have been living a near to "normal" life for quite a few years now.

  • Hi there, you and your wife might want to check out the documentary Fat, Sick and nearly dead. Both the guys in the film had an auto immune condition....they juiced for a period of 60 days and both got well. Obviously they were overweight as well, and the diet does make you lose weight, so if your wife is thin, you will have to add other healthy meals.

    My health always improves when I cut out Gluten, dairy and caffeine. I add other things to my diet which also helps. Coconut oil, apple cider vinegar, garlic, turmeric, neem tablets, lemon juice drinks...basically anything with anti bacterial, anti fungal, anti viral properties. Dandilion tea is also good.

    Good luck to both of you. I'm sure you will find so e kind of balance if not a cure.

  • I can really relate to everything you are describing about your wife. I'm 61 years old and didn't get diagnosed until 1 1/2 yrs ago. I suffered most of my life with chronic pain that no one had answers for. I've been on Hydroxychoroquine for 1/12 years. It helped manage the pain so I could function. I still slept a lot some time. But long term use of this drug does have its side effects and I decided to treat my condition naturally.

    After much prayer, I was led to a book call "The Immune System Cure" by Lorna R Vanderhaeghe and Patrick Bouic. What they said made sense. The section on IMMUNE SYSTEM & DISEASE, sections 9-12 addresses our condition. It starts out pretty technical but try to read it. The info really helps you understand the treatment more. Whenever I fasted on raw juices, I had NO PAIN. I ate raw foods and nuts & seeds for 2 months and NO PAIN. As soon as I went back to food, all the allergies and pain came back and I was VEGAN. After reading this book it made sense.

    I decided to try it starting today. I asked my doctor at the Lupus clinic to support my new treatment. They did a blood screenings for DHEA levels and Celiac disease. All of this is listed in the book.

    To fully understand what gluten-free is, you MUST read a book called "Wheat Belly" by Dr. Wm. Davis. It's short and to the point. Shocking info for me. I just didn't know. I finally understood that gluten-free products are really not wheat-free.

    I decided to raw juice for a few days or weeks to bring more alkaline nutrients into my system using the book "Fresh Vegetables and Fruits Juices" by N.W. Walker. I've used this book for years as a vegan.

    I hope this will help. Hopefully, I will be able to bring some good news with this treatment.

    Afiya52

  • Hi, Sorry to hear about your wife and the situation that you're in. I diagnosed lupus a year ago and at first I didn't know, may well I has it for a long time, but it never showed until last year. I has a boyfriend and to keep up with me, I know it isn't easy either...someday I feel you and other day I'm tired or moody, but thanks for his support, good thing with aren't live together, because I find probably will be hard for him. He read book and asking doctors about the symptom ...I was so sad and depression about how I get lupus, it still a big questions. I do research online, because doctors don't tell me so much, because amusing everyone's imusing

  • Think I have this along with Lichen Sclerosis! I've been this morning for more blood tests.

    The only success story I've heard of is an elderly chap on Jason Vales 28 day "super juice me" film. When I juice I feel much better. Definitely no sugar, I'm celiac so avoid wheat as much as possible and eat mostly fresh and raw fruit and veg. Less stress on my digestive system.

    Good luck, you sound a lot more understanding than my husband. Stopped telling friends, they just glaze over!

  • Hi living the dream and to all the others hear.

    My question is how do you stay faithful to the one you love if you don't understand what there going threw?

    I've been with my gf for 2 years now and only as of last year she was diag. With lse lupis. Its hard for me to understand what's going on. And lately I've been unfaithful to her.  I've cheated multiple times on her and I've lied to her. I'm trying to right those wrongs. I want to be in her life even tho she doesn't believe a single word I say right now. 

    So how do I help her and stay faithful?

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