Hi All, I am 32 and have been recently been diagnosed with Lupus. I am still in denial about this and haven't fully accepted it and keep holding out that the doctors have got it wrong. I guess I have known for a long while that something was not quite right but chose to ignore the symptoms and carry on as I had watched my mother suffer from arthritis and fibromyalgia for years and did not want the same fate. I work full time in an office and my job is very stressful at the best of times. For the past nine months I had been experiencing spells of crippling exhaustion and joint pain which were making doing my job extremely challenging. I wake up in the morning and feel like I was in a 90 year old body full of aches and pains. Driving the 40 minutes to work was a challenge all of its own without facing the day ahead. When at work I had what I can only describe as "brain fog" where I found the most mundane tasks a huge effort as I just couldn't get my brain to focus (most likely from the tiredness). Staircases were like Mount Everest where I once ran up them. About two months ago I started into an awful flare up. Every muscle in my body ached that all I could think of in work was getting home to a hot shower to relieve it. My joints started to hurt so badly that it would stop me in my tracks when it started and the pain would jump from my foot, to my elbow, my wrists and fingers etc completely unpredictable. Then the unbearable back pain started and wouldn't let up no matter what pain relief I took. I went to my GP and he referred me to the rhumatologist who said it was lupus as my bloods had shown ana positive etc, combined with my other symptoms and photosensitivity etc . He started me on hydroxychloroquine 200mg twice daily. He also gave me a steroid injection which didn't do a huge amount and that was disappointing. I have been off work for the past three weeks and in bed for the majority of this time. I am going back Monday part time for the first few weeks to see how things go. Employer is excellent and extremely understanding but feel very guilty taking the time off as I know how busy they are. I am very nervous that all of the symptoms will come back as bad as before when I return to work. I suppose I am just wondering if at some stage when the medication kicks in will I go back to the person I used to be with loads of energy and pain free? I have a nine year old daughter who I am a single parent to and she needs me to be ok and to have the energy to do everything she needs me to do. The last three weeks I have felt useless to her and am just blessed that I have an amazing family who stepped in and we incredible.
Also, I hate telling people that I have it as for all intensive purposes I look fine, nothing is broken and as one person has said over and over "well it's not cancer" (which I know is a worse fate of course but when you feel battered is not of huge comfort to be told that repeatedly). My immediate family are extremely understanding and supportive but others just ask are you better now like it was a cold I had or put there two pennies worth in for cures - one was that her brother in law cured it by eating liver three times a day (she should really write a medical journal with all that insight).
To sum up I suppose will these drugs be like a miracle and rid me of these symptoms so I can live a normal life again?
Thanks
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Jacpat
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You describe the way I felt when diagnosed eleven years ago - listen to your body. Things will get better if you take the drugs, are sensible and pace yourself - you are not the same person you were so don’t expect to charge about from morning to night nonstop. Friends, family etc need reminding that you are not firing on full cylinders but that is not to say you can’t have fun and do the things you want to do - but with rests in between. Tell everyone you know how you feel and you will find how wonderful friends can be. As for the not cancer retort - some people recover from cancer - we have this forever!
Good luck.
If only these ppl read up on lupus- it''s just as bad as having cancer!!! Feel for you the tabs will take round abt 6 months to kick in in meantime don't push yourself to get things done tackle 1 thing at a time. Try cutting gluten from your diet it will make a big difference and help with bringing the inflammation down. I've tried so many things over the last 4yrs it's trial and error have to see what helps your body. Take care let us know how you get on.
I understand too. There is hope the medication will make a difference for you. I had only minor joint pain, but the Hydroxy took it away within a month of the meds and now I'm at 3 months and joint pain and extreme rashes have not returned (though we'll see when the sun really comes out). I rash a bit here and there now and still have extreme sun sensitivity with anti Ro antibodies. That is unfortunately not being corrected by the hydroxy. For some people it can make a difference supposedly. Perhaps you will be one of those?
If someone hasn't had real illness, making comparisons to other illnesses is just plain ignorance. I have had cancer too and it has *virtually* gone away. The scare is always there because it could come back and I'm BRCA1 making me predisposed to many cancers, so no it's not the same as it being totally gone, but it doesn't hamper my everyday life anymore. It wrecked it for a year (which I was prepared for), then took another 2 years to find the source of the chemo damage to correct the fatigue. But now I have this connective tissue disease with the rest of you, which I wasn't prepared for. And I've got a new kind of erratic and debilitating fatigue and a mountain of other symptoms that look like they could go on forever. It's a terrible fate and hard to get one's own mind around let alone anyone else's!
I think we may have to educate people that cancer is not the only horrible disease out there; and that what we have is incurable at present and not obvious to the outside world because we are generally forced inside when the worst is happening.
Your Doctor is trying to get you regulated. It’s a process because you get to the point where medication only worked to a point. I have had lupus since 2010 and I have been thru all medication and infusions. I’m now going at a Maximum Prehab and health I get adjustment every week and it helps me. We all have a long haul but never forget your faith and never give up.
I wonder if Thyroid issues are connected to lupus? And then, if the thyroid hormones are improved, will the other symptoms that lupus and thyroidism share be improved?
My doc ran some thyroid tests, and discovered I have Hypothyroidism. Since being on Levothyroxine for the past 3 months, I feel better in general. It has helped, and I just wonder if any of you have thyroid issues, or if you've been checked? My grandmother has thyroid issues and lupus, and my aunt has graves disease. Maybe some people have both?
So sorry you're going through this. It can be very hard but you will learn how to manage it in time. I'm not sure why the steroid shot didn't work - did it not help at all? The Hydroxychloroquine will take about 12 weeks to kick in but you should then start to feel very much better. Is the back pain caused by the lupus too? Try to be kind to yourself until you feel better - rest when you can but try to keep stiff joints moving. Stress fuels flares so avoid as much as you can. Perhaps there is a rheumatology nurse who can help support you until you're on top of it all xxx
Yes the back pain is apparently. It started about a week after I saw the rheumatologist initially and he had asked me to call after ten days to see how I was keeping. When I mentioned the back pain he called me back in for another injection into the back and just said that it was all part of it. When that started I had myself convinced that he had been wrong as my back felt like it was breaking but he reassured me that I had just been unfortunate to get such an aggressive flare up but was lucky in someways as it made it easier to diagnose. Positive in some ways I suppose.
My first rheumy appt coincided with a bad flare so diagnosis was easy and 'on the spot', confirmed at follow up 3 weeks later. My bloods are often unremarkable so it was very useful to present with hot, red swollen joints. Take care xx
Thanks for everybody's feedback, its great to have this platform to speak to people who have this condition as I have felt a bit isolated the past few months and like a complete hypochondriac (especially as I haven't visited a doctor in years and am now like a frequent flyer). My thyroid bloods were slightly increased (but nothing to be concerned about) when I had them done in November but have regularised in my last set taken two weeks ago. I'm not too sure whether the two are connected as I am only learning about this as I go. Back to work tomorrow and very nervous as am hoping that I won't end up in the state I finished up in 3 weeks ago barely able to walk. But hopefully all will be fine.
Panda2 I am so sorry to hear all that you have been through, I think you are incredible to have gone through everything you have and still are going through. I don't know if I would ever be as strong as you!!
3 weeks is not enough time for meds to kick in. I am on prednisolone and hydroxicloroquine since September 2017 and still on a a sick leave. Much improvement. But still muscle weakness burning and pain. For 2 weeks on a antiepilectic and my brain fog is vanishing... today I have an appt with a psychiatrist because of my legs, muscles...this is now my major worry. Take care Jacpat. Pace yourself. Remember if you overdo one day, the following day it won't be possible to for you to work. Tough but true. All the best X
You have almost described how I felt when I was diagnosed last year at 42 - have now accepted I have lupus and trying to manage it while they sort my meds, it is frustrating and some times you feel like you’re the only one - this forum hopefully proves you’re not
I have worked my backside off over the years in a very stressful high pressure job and finally got to head of department 2 years ago - work have been brilliant have only told who I need to - telling all and sundry I’m not happy about as could affect me professionally
Although if I had a pound for every time some said I look ok or asked me if I feel better I could happily retire and that’s just since June last year
I have found pacing myself and eating better helps albeit being veggie it’s a bit harder- as I say work have been great lucky my boss is a real details guys so asked me for a copy of the info booklet they give you when you’re diagnosed and read it cover to cover - to start with he was driving me mad with his should you be doing X should you try Y but he’s calmed down a bit now
You have my respect though I don’t have children (my choice) but I don’t know how I’d manage if I did sometimes when I feel - well pants!
Hang on in there and keep posting for support once they sort your meds should be a lot better
This is such a lovely community of like-minded and like-bodied people. It's a super place to touch base with our specific type of reality. I've only been on the site for a few months and it's made a difference to me. Hopefully you'll be able to check in here when you need to and then be ready to take on the world, your workplace and your consultants! : )
Hi the charity Lupus UK are great for info such as a DVD for the newly diagnosed. Information about working when you have Lupus ( including one useful for employers ... They have to try help keep you in work by providing "reasonable adjustmens")
Everyone with Lupus is affected a little differently. Be gentle on yourself, give the hydroxychloroquine time to start working, and learn to pace absolutely everything you do as even with medications and Lupus "under control" / "mild and stable" most people with Lupus have limitations due to fatigue.
You probably will also have to be careful if out in the sun as most of us have some level of sun sensitivity ... For some the sun and UV light can make any skin rashes worse, for others it can cause "flare ups" in symptoms
Try to avoid stress and if you smoke stop smoking
Also make sure you're getting good pain management
The Lupus UK website had info about managing fatigue, pain management etc
Finally don't be afraid to mention to your Drs how it all is affecting your mental as well as physical health.. both are important
Thanks for the recommendation on DVD. My mum is great and as soon as I was diagnosed she was on to the website ordering leaflets from Lupus UK but I will definitely look in to DVD. With regards to the sun, for years I have said I am allergic to the sun. Couldn't step foot outside in the summer sun or even on a bright day without coming out in an awful painful rash. I would go to the GP every year with it hoping something new had come onto the market to help with it. My friends always teased that I would be the only person sitting in the shade covered from head to toe when everybody else was sun worshiping. I hibernate in the summer and become a recluse. I was only ever taken on one foreign holiday with my family and spent the entire time in the apartment with the air con on and only went out extremely early in the morning or late at night and hated every second as I felt terrible. We all learnt our lesson after that
Welcome to the LUPUS UK HealthUnlocked Community, we have a lovely community who are always willing to listen and help however they can. We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...
I am glad to hear that you have the support of your family and your employer. Stress is an important trigger of lupus; it is important to give yourself time to relax. We published a blog article on ‘stress management and relaxation’ which you may like to read here lupusuk.org.uk/stress-manag...
Hydroxychloroquine can take up to six months to fully exert its effects. To find out more about hydroxychloroquine, please read our factsheet ‘LUPUS: and Medication’: lupusuk.org.uk/wp-content/u...
Explaining lupus to friends, family and people around you can be difficult sometimes which is why we published a blog article on ‘lupus & relationships’ which I hope will be helpful to you lupusuk.org.uk/lupus-and-re...
It is possible for people with lupus to experience periods of remission whereby their lupus is controlled; reducing their signs and symptoms.
Below I have included some information links which I hope will be of help to you:
Thanks so much for feedback! I just read the article on brain fog and so relieved it wasn't just me losing my marbles. I honestly thought at one stage I had early onset Alzheimer's as my memory was ridiculously bad and I couldn't do the simplest of tasks! I felt stupid even though I have two degrees and a masters qualification I was struggling to write a simple letter at work or carry out tasks I knew how to do or trying to recall a file I had worked on and my brain would go completely blank and I would just feel useless. I am so glad to read that I'm not losing my marbles. I went back to work today and tonight I feel like i'm back to square one like the last three week were of no benefit whatsoever. I am in so much pain in my neck, arms, back and shoulders and am completely exhaustion central again where I had started to feel like there was a turn coming before I went back. It is so frustrating. I have een taking paracetamol, ibuprofen and Tramadol all day to try and keep the pain at bay but I may as well have been taking smarties for all the help they were!
I have to say I have the most amazing bosses and colleagues, they are very kind and very accommodating and understanding. I know though that it is early days and as I am in the private sector in a medium firm that my absences will eventually cause an issue. Even today, I came back to three weeks worth of work build up on top of all the files I already manage and those that have been landed over the past few months. There is enough work for three people easily and I find it extremely overwhelming and am finding the job hard to cope with as it is very stressful.
I wonder is there anyone who works at a desk all day who finds that doing so is having an awful impact on them. Sitting seems to be an awful struggle which seems crazy really. I am most comfortable lying or standing (until my body gets tired and needs to lie down again). Sitting is extremely uncomfortable. Before the diagnoses I was seriously considering a career change as while I love my employers and work mates, I hate my job. It really gets me down at times. I had made positive moves to achieve this goal. Its something I have wanted to do for years but never had the courage (or money) to pursue it as it would mean undertaking another post graduate degree. Now I am finally in a position to go for it and wham this happens. Has anybody made a move like this and not had the lupus hold them back??
I am sorry for the amount of questions but I feel like you all have such a wealth of experience and knowledge and I have people who understand and can advise.
Hi there, I know exactly how you are feeling, I am so tired and achy all the time. tonight I woke up with such pain in my arms, wrists and ankles.. I took an ibuprofen and it helped for a few hours, at least I managed to get a couple more hours of sleep. I am still waiting to get bloods taken 7/5, then will see a dermatologist and later the specialist 19/6.
The sun is so strong at the moment, I bought a hat today and lots of sun lotion. I live in Spain and it is getting very hot..... I have never been a big fan of the sun but now it's ridiculous I am like a vampire.
I still have my rash on my chin, mouth and nose, been putting on the cream the dermatologist recommended but it doesn't seem to be helping. Although I know my stress levels are so high at the mo... my boyfriend, and I are struggling to keep things together... he had a stroke 3 years ago and a couple of mini ones after... he is ok, working and leading a relatively normal life but his behavior has changed. He can be quite aggressive and nasty at times. -He also puts my diagnosis aside, thinking I am exaggerating... it is very tiring.
Take care Jacpat and to all of you out there struggling with this invisible but hostile situation.
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