hi my name is Kerry, I’m a 42 year old mental health nurse from Burnley Lancashire.
Last 4 years have struggled with a lot of symptoms of Lupus and autoimmune issues but was diagnosed with long covid. After such a long hard slog and new symptoms appearing all the time I had specific blood tests and all came back positive for antiphospholipid syndrome and GP said probable lupus, Due to the NHS wait of over 2 years to see rheumatologist I saw a private consultant who confirmed Lupus and Antiphospholipid syndrome. He wanted to check that I was safe to commence medication but one of blood tests came back positive for latent TB, which means I’ve had to go on antibiotics for 5 months before I can commence treatment for management of Lupus.
After discussing my history with rheumatologist it seems I’ve probably had Lupus symptoms for many years but possibly Covid and further widespread inflammation has highlighted this further.
I am really really struggling with fatigue and struggling to get through the day, picking up so many infections and bugs.
just looking for some advice tips and tricks to manage fatigue and maybe boost my immune function as I feel so drained at the moment x
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Welcome Kerryann, hope you find lots of support here.
I had covid before first lockdown and then had issues with kidneys, eyes, gut etc.
Prior to covid I had autonomic dysfunction (POTS type symptoms) jont pain and fevers that my GP was beginning to investigate.
It is great to now have some answers.
I take average 300mg hydroxychloroquine a day and 50 mg Mepacrine three times a week. It is nearly five years since I had covid. Twice I had been on short course of steroid.
Things improve once treatment starts.
You might relate to some of my posts, about covid making things worse. Here us one:
Hi Kerryann82 in taking note of the various responses in this string you might also want to get your D3 Blood levels checked, if your Dr has not done so already.
My wife developed lupus after covid vaccine injections and besides the medications mentioned in this mail string she found ensuring her blood D3 levels are maintained in the 60-80 ng/mL range gives her a lot of benefit as regards her energy levels. Do of course check with your doctor before considering to do so.
Agree, my vit D levels were found to be very low, not just low, after covid.I presume they were like that when I got covid, but I did not know.
Might have been a reason for the progression of autoimmune symptoms.
As I had never had vit D checked in my life until then, now in my 60s, it could well have been low in the years prior to covid, too.
I was always out walking, so sunshine would not have been an issue.
Had VitD3 ever since, and as then became photosensitive ( coincidently first malar rash a few days after my first AZ vaccine) vitamin D supplement has been even more important.
Mepacrine appears to be helping reduce my photosensitivity now, so I tolerate going outside more but I srill wear sunscreen.
thank u for the reply. The Vit D does make sense, last year the GP found I was low in levels and put me on high dose for 5 weeks and to be fair I had a really good run with flare ups after that. What dose Vit D or brand do u take now ?
Normally a single capsule of 3-5000 IU per day should get your blood levels up to 60 ng/mL particularily if you do not go out in the sun......these doses seem to be the most favoured by many Dr's and medical consultants but as always check with your own Dr.
Some Dr's will recommend a single weekly higher dose for convenience.
There are many Vit D3 providers on the market so as long as you go with one of the more established companies you should be OK, your Dr or local pharmacist should be able to refer you to a known,quality brand......companies like Euro-D, Now etc are brands my wife has tried without any issues.
lupusuk.org.uk/fatigueHi Kerry, I remember reading an article relating energy to spoons. Each thing you do requires a spoon until you run out and feel fatigued. So they said you have to be selective about what you do. Unfortunately for us with fatigue we do need to take things at our own pace and when we need rest we need it. When you start treatment hopefully things will improve for you, you just have to give it time. My fatigue has certainly improved with treatment! I also find that doing something to boost serotonin will also give you a feeling of antibiotics energy boost. For me it's a gentle walk in the woods or spending time with animals. I just can't overdo it and going for a walk is easier said than done sometimes lol.
As for boosting immune function, my consultant said not to, which makes sense when my treatment is trying to calm my immune system down. I am on methotrexate, hydroxychloroquine etc and due to picking up viruses a long course of anti virals.
I hope you can start treatment soon and things improve for you. Stay positive and look after yourself! This is a good place to share and vent if you need to.
Hi KerryAs others have said D3 supplements made a noticeable difference to my fatigue. Other things include dietary changes - mainly cutting out sugar but you could search for anti inflammatory diet if you want to take it further. I also saw an occupational therapist who explained "pacing" and had some helpful suggestions for the most energy sapping areas of my day.
You mentioned picking up lots of illnesses. Could you use some of the protections we had during the pandemic to help avoid infections? Ventilation, wiping door handles and hand gels for example.
Your diagnosis is a starting point, it will get better but does annoyingly take time.
thank u for the reply. The Vit D does make sense, last year the GP found I was low in levels and put me on high dose for 5 weeks and to be fair I had a really good run with flare ups after that. What dose Vit D or brand do u take now ?
I currently take 1000 IU and use a spray by Better You that I get from Amazon. I used 3000 IU in the beginning and dropped down once I felt more stable
Kerry Anne, I have same as yourself for many many years the best thing you can do right now is rest yourself and I hope you get correct meds to help with all of your A P S and Lupus.
Kerryann, I feel your pain, not just physical but emotional also. After being first diagnosed with fibromyalgia and chronic fatigue in my 40’s, by 60’s Lupus & Sjögrens was added. Now in my 70’s vasculitis and degenerative disc disease has been added. Along the way several neurological disorders and MTHFR. I refused to go on medication after the first treatment I was prescribed, hydochloaquinne, trashed my eyes. I do take medication for dry mouth and chronic fatigue. Determined to find ways of healing without conventional medications and harmful side affects, I purchased an infrared sauna, used liquid glutathione and stem cell patches along with many supplements and essential oils. My Lupus has been in remission for 2 years.
I struggle with fatigue too. It's really hard, but hopefully you'll feel better once treatment starts. I try to spread tasks out more these days, rather than doing things in one big chunk (easier said than done sometimes, when I get going on something). SPF50 and sunglasses help when I'm outdoors, if you think you might be affected by the sunlight. I have naps sometimes too, because I'm so drowsy at times I can't keep my eyes open anyway!
Just a quick question - what led you to being diagnosed with Antiphospholipid syndrome, if you don't mind me asking? I've tested positive for one of the antibodies, but with no history of blood clots they won't diagnose or treat it. I've wondered about seeing a private consultant.
I’ve had no blood clots that I am aware of x 2 positive blood tests, severe headaches for years , tingling and numbness in arms and legs x there’s such a cross over of symptoms it’s hard to know x
There are a lot if fatigue management resources on ME/CFS links. The principles are the same. Avoid a pattern of boom and bust eh doing too much one day and crashing the next. Rest when you are tired...dont push through. Work out which activities trigger fatigue and avoid, manage, adapt or pace them throughout the day/ week. Rest for an hour am and pm. Go to bed and get up at the same time everyday to regulate sleep. Try and stop an activity before you get tired and work out how much energy have and spread it throughout the day. Eat well and keep hydrated. And most importantly know this will pass and you can get better. Take care, julie
welcome Kerry to this lovely support group, I find that I dip in and out with questions/looking for advice and it is reassuring that there are other people going through the same thing.
I have connective tissue disorder with features of lupus and scleroderma, osteoarthritis and inflammatory arthritis.
I am also a nurse though now working in the education and training area, and the fatigue is terrible. TBH you have to listen to your body and rest when you can. Some days my apartment is a total mess and I could be in bed by 8pm but I get so tired I cannot do anything but get into bed!
So as I am still working I try to arrange my shifts so I have a bit of a break like do 2 days together then have a day off and so on. Things like changing the bed, I send my linen to a launderette so I don’t have to deal with drying and ironing. I do not have a cleaner but I will need to look into getting help in the New Year. I try to get out for a short walk at lunchtime if I can and eat my main meal in the middle of the day.
Some days I am great but when the fatigue hits you have to go with it.
Speak to occupational health and your line manager to see if there is anything they can do to help. I have to work and have a mortgage to pay so I do worry. Let your friends and family and work colleagues know. This is an invisible illness you may look well but you are feeling dreadful.
I did an arthritis Ireland online programme about symptom management, it was excellent. Versus arthritis is a great website as well as SRUK.
Thank you this was great to read this morning when I’ve woke up feeling unable to go to work, I feel so guilty and found myself taking photos of my big red burning Malar rash that indicates a flare up for me, just to try and prove I am telling the truth. Funnily enough I had to get a cleaner a few years back and had been thinking of cancelling her because I was doing so well, I definitely won’t be doing that now 😢
I am just counting down the days when I can get started on some treatment to hopefully reduce the severity of the flare ups x
you are most welcome Kerry, best of luck, and reach out for support , especially at work. Even though work sometimes exhausts me, it’s good for my head to be at work and I do not think it is good to be home alone especially when you feel exhausted and in pain.
Yes definitely, on reflection this flare has been coming since I had Covid a few weeks ago and since then I’ve carried on working and had lots social events too, which I try and avoid usually as I struggle with now. I think I was daft to think I could do 4 14 hour shifts this week. X
Sorry to hear you are having a bad time with lupus.
Been there, bought the T shirt but survived thanks to a fantastic Rheumatologist. Diagnosed during my forties, with the usual fatigue, loss of hair, joint pain and skin itching like mad, circulation problems. Was blue in winter suffered from Raynauds and was constantly cold. He first diagnosed a low thyroid, and it was like magic. Some of the symptoms started to subside. Was on hydroxychloroquine and nifedipine Did not want steroids was the best move for me. Started a diet similar to Arthritis sufferers.Adopted a healthy diet without additives. Gave up all the best things in my life. Cheese, red meat, animal fat, coffee and red wine and also tea due to the tannin.Became a semi vegetarian. Gave up all night shade vegs, peppers, aubergines, tomatoes. Cut processed food from my diet. Loved the greens and fruit, limited carbs, fish figured heavily on my menus. Did not want to take nifedipine (caused swelling of my legs) as wanted to improve my diet by exercises. Gradually joined a yoga class and did not want to become obese so got into Pilates, stretching and gentle swimming. Am now in my early seventies. Have gradually weaned myself off hydroxyl about two years. My lupus has been described as quiescent for the past two years. No more joint pain, no more fatigue. Having a very active life doing an hour exercise every day except weekends when I give my body a rest.
Ah also had an extremely fragile immune system Got shingles and Bell’s palsy to crown it all so was no picnic!
One thought crossed my mind during that journey, was it all linked to the menopause?
Food for thought there. Don’t suggest that you launch into a similar journey but we are all different. Feeling so much better now with no sign of lupus looming but am still being prudent with my diet. My doctor keeps worrying about my liver lupus related behaviour but am taking one day at a time.
Just thought I would share my journey with you, don.t despair be patient trust your rheumatologist and maintain a good relationship. Mine kept me going from my forties to my seventies and we grew old together. I was sorry that he has now retired but I owe him a lot.
Thank you that’s great to read that you took control. I think the feeling of being out of control and vulnerable is one of the biggest upsets for me. Lupus has sent me into early menopause at at 39 and HRT has been a god send for me x
Hi Kerryann. I have had Lupus for over 20 years along with ME which really affect fatigue levels. Once on medication for Lupus, things improved. The main recommendation I would give is to 'pace'everything you do and rest. Dont feel guilty about not being able to do things. All techniques I learnt from a course for people coping with long term health issues. I was on Hydroxychloroquine for 22yrs which has now affected my eyesight. Coming off flared up my fatigue, but an increase in steroids has helped. I hope you feel better soon.
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