Ive just been finished from work. I have been on the sick since September (I have lupus, osteoarthritis for which im needing knee replacement and being only 45 is not good. Now im being monitored for fibromyalgia). I knew it was coming as there wasnt another job available for me to go into as my job as a carer has become to physical. Im limited to how far and long i can drive too. Since this pain has gotten worse with my arthritis i found it has had such a big impact on my life. I have gained weight become less active. I feel like an old person. Sometimes the response i get from some doctors or nurses is you are young lose weight you will then be fine. It seems that that is the answer to everything. I do try to swim but have been banned from other types of exercise by my consultant. Anyone else have similar problems. Thanks
Jobs loss: Ive just been finished from work. I have... - LUPUS UK
Jobs loss
Hi teaparty
You have a lot to contend with.
I found making simple adjustments really helped me. Try not to eat between meals
Manage what you eat at mealtimes
Try 2 short walks a day
Watch what alcohol you drink (I don’t drink it Mon to Thurs)
Give yourself a treat at weekends you deserve a treat!!
Don’t expect big improvement quickly losing a pound a week is enough.
Good luck ❤️
By the way your condition is not caused by your weight you have serious problems caused by nasty disease. But losing weight helped my self esteem and well being.
What a lovely thing to say
Thank you i appreciate your advice
Hey teaparty,
Yes, I completely relate to you! I was diagnosed with fibro about a year and a half ago and now am being investigated for lupus and/or rheumatoid arthritis. My fibro was actually catalised from an injury I sustained from work, who weren’t very happy that I had to take 6 months off for this (5”1 woman hauling barrels as large as myself, two at a time, sometimes full of ale - I was fit then but not that fit!). Anyway, I ended up having to go back to work because inevitably we couldn’t pay our bills and they cut off your sick pay at some point. I went back to work knowing I wasn’t well enough but didn’t have a choice and it was horrible to be honest, even though I have always really enjoyed working.
On top of that, a couple of months later my Mum had three strokes and I was thrust into the position of full time carer (gladly of course, she’s my Mum 💖). Now my job is to look after her, which is difficult when you’re not looking after yourself as a sick person. I was put on Pregablin for pain and no one told me that I could gain weight easily on it (I obviously read the paper inside the box but they all say that don’t they!) and basically in about 3 years (as I was having symptoms a year and a half before I was diagnosed) I put on 6 stone. I have always been a small, petite person so this is, by far, the heaviest I’ve been. I used to run at least 3 times a week - can’t do that now. I’ve been told I’m not even allowed to try, not that I think I want to to be honest, although I do love running. I’ve so far lost two stone, but it’s taken a heck of a while because the Pregablin makes it nigh on impossible for me to lose the weight (I have also read other people have the same problem).
It took me so so long to find my star GP, but she really was worth the wait. I now know I have someone who will believe anything I say, because I am saying it. For so long, and even now, I didn’t think I was worthy enough of help because so many docs didn’t believe my fibro because I was so young. Health doesn’t care or know your age - it just is. It just happens.
So now, I don’t work persay, and couldn’t do anyway if I wasn’t caring, I can’t exercise and I’ve just had a bad experience with a consultant who didn’t believe anything I said (I am writing a post on this soon).
You are understood dear. It’s rubbish but you must keep fighting for what you believe is right. There are always people on the other end of this forum that are willing to give help and advice or experiences. You aren’t alone 😊
Take care lovely 💖🌟
Thank you. It good to know im not alone. I used to go to slimming world and struggled to lose weight the consultant from there was horrible always having a go about putting weight on and that the only meds that put weight on you were steroids so i left.
Peppytea, I felt as though I'd written what you wrote. - I'm in exactly the sme position!
Teaparty we really aren't alone, big hugs xx
I was diagnosed with Lupus with cutaneous manifestations last year but prior to this was diagnosed with Fibromyalgia, hypertension, DVT and IBS. My lupus symptoms are Joint pain - knees, feet, hands, neck, back and shoulder, extreme fatigue, hair loss and dry and itchy skin with rashes, dry eyes and mouth. It's a lot to cope with but cope we 'fibrolupees' must. Luckily for me I can carry out self employed work around my flares but it means I need to be prudent with my finances. Currently I'm considering moving to a bungalow, some days I stand at the bottom of my stairs and it's like looking up a mountain. I'm 56 and I've been told I'm too young for a knee replacement even though I basically have no cartilage in my left knee and extensive osteochondral damage. Ordinarily I'm very active I love, swimming, yoga, pilates and dance aerobics, exercise meant I took less medication for fibromyalgia. The lupus symptoms started over the last two years and peaked end of summer 2018, I stopped attending classes as I struggled through a really bad flare of two conditions. I thought I was losing my mind and I must admit my mood took a nose dive. I consoled myself eating all the naughty things we should have in moderation. Now I'm trying to get the weight off, I'll get there with smaller portions and weekend treats only. I've been told the hydroxychloroquine takes 6 months to begin to feel the benefits of the drug, two months to go then. Since lupus diagnosis I've had two very bad virus colds, mid back pain and neck and shoulder pain which led to early hours of the morning A&E attendance with intraveneous pain relief being given in the home before I could be moved. I have my sunshine days and thunder and lightening days always hoping for more sunshine days in the coming week. Stay strong.
Its so hard some days but your right we need to stay strong. Im waiting to be put on the list for a full knee replacement but i have to lose some weight 1st. I had to push for my knee op as my own gp refused to send me. Hope you do eventually get sorted. I know what you mean about the stairs too. Mountains are hard to climb x
Hi tea party
I know exactly where your coming from, I was let go from my job ion January 4th 2019, due to not being able to fulfil my job discription role, I was a nursery nursery practitioner in a private day nursery, I too am waiting a full knee replacement ( hasten to add because of an accident at work, but no liability taken by the company, ) I have put on weight and feel that sometimes life is passing me by , at least you can swim and alittle exercise is better than none, I’m going through testing for fibromyalgia but rheumatologist is about 99% sure that I have it, and have Rheumatoid arthritis in both wrists and fingers, but was told just to get on with it , so I’m sending you a big hug and hope that things get alittle easier for you, and remember you are not alone xx
Hi Tea party
Try and look at this from a positive Angle rather than from a negative one.
I was diagnosed with sjogrens syndrome in 2001.
Then diagnosed with lupus sle after a serious episode left me in itu.
I also have APS and protein s deficiency blood clotting disorders.
In November 2017 I was diagnosed with fibromyalgia which at times is bloody awful.
I also have reactive arthritis. The lupus has affected my lungs and heart.
I had Pcp fungal infection Nov 2017 and was again very ill in hospital and back on prednisone after being off them for 3 years. I was on 80mg and gradually weaned off the last August.
I've put a stone and a half on which needs to come off.
I was told by my rheumatologist in 2010 that I would not be working in 5 years and I wouldn't listen.
I worked for my local council as a homeless prevention and assessment officer.
However the nature of the job was putting me at serious risk of constant infections.
After another illness my consultants wrote to the council and explained in detail how my condition affected me and the role I had was making my conditions worst. My consultant requested a reasonable adjustment.
The council offered me redundancy! Lol
I couldn't believe it as there were lots of options they could have done. I'd worked there nearly 19 yrs.
Admittedly I because very bitter about it. I took medical redundancy in March 2016.
I've never looked Back!
Within 12 months my lupus went into remission ( NO more stress you see), yes I still have flares from the sjogrens and fibromyalgia. I lost my mum to cancer on the 1st of August last year and I put this down to that.
I have more me time now. If I get tired I go for a nap.
It's nearly spring and the weather's getting warmer so I go for little walks when I can with my dog.
I love to potter in the garden so again that moderate exercise.
It will be salad season soon lol so in time you will see that the weight will gradually come off.
You need to sit and think what is it YOU want to do and do it.
're the money situation I went from full time earnings, to part time earnings to pip and esa.
We survive on my husband's wage. We have 1 child.
Yes it was hard at first but we cut our cloth to what we could afford.
As my husband said money is nothing when it comes to health.
It will all work out for you.
I am 47yrs old.
Hi I'm in the US but feel we are in similar boats. I've just found out my job will be gone by the end of the year unless I do a transfer from east coast to west coast. Trying to find work that wouldn't be too physical but pays well is extremely difficult. I have lupus and graves disease. And I just sprained my ankle for no apparent reason. I deal with fatigue and pain and many other things on a daily basis.
I've been gaining weight instead of losing, hyperthyroid and what little I eat should not be causing weight gain but I still am, it's crazy. I have struggled for 14 years (since the birth of my oldest child) with weight trying to lose instead of gain, done diets for years at a time, gone 100% gluten free, upped the amount of exercise with walking cycling swimming taken exercise classes etc etc. Nothing helps. It didn't used to be this way, I didn't have a weight problem until after I had my son and started having other symptoms too that I suspect was undiagnosed lupus and graves/hashimotos.
I read that they have discovered immune cells in the small intestine that are programmed wrong to send food as fat storage instead of as energy to be used. And they have proven that people without these immune cells can eat normally and won't gain weight.
Now, I'm not a genius or anything and I hate to throw around theories but I can't help but think, lupus and other autoimmune diseases... we have problems with our immune system and we typically have chronic fatigue. What are the odds that these autoimmune diseases could also be linked with these bad immune cells in the gut causing weight gain and fatigue.
Sorry, anyways. I hope you'll find something that works for you. Don't give up, you're not alone. Sometimes just speaking up to people even those you've just met can point you in new directions. I shipped a package the other day and by the time I left I had a whole list of companies that are hiring, granted most of it required intense physical labor but you never know.
Thank you. You may be right. Hope you get sortted.
Hi, it seems unfair being finished by work doesn't it, even though you know you can't do the job. I can relate to that, I did manage to get access to my pension, thankfully. I bought an automatic car and can now drive further, it's less painful and less tiring. I haven't found a solution to the weight problem, just need a fairy with a magic wand I think👼wonder if it will work . Good luck, I hope you find answers
Hi, my life changed when I was 51. I had worked outside all my life, gardening, then postie for 30 years. It was hard for me to accept that I wouldn't be able to work outside anymore. I have Lupus SLE and secondaries, RP, Sjorgens,. I was off work for 19 months. I had to go to 2 tribunals with ATOS, although they said I had a disability they deemed me fit for work. I did caring for a bit, but it was too strenuous. I had a job to lift most patients, then a bit of cleaning. Finally I ended up in retail. It pays the bills. I had to go to Occupational Health to stop them from putting on the tills near the freezers. I felt physically sick as my fingers would whiten with the Raynauds, then I'd start shivering.
When I was first diagnosed I also had a DVT, winter of 2011 not able to get shoes on, as my legs swelled up. It's been a long journey, you have good days and bad days. There's no need to rush. If I rush then my Sjorgens flares up.
I was a carer but i suppose when you get to a point that you need help then its probably time to go. Im looking for a job as i still want to work. Its non stop for us really.
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