Lupus flare, thyroid problems, cfs?

[SarahLuna]

Hello everyone,

I wondered if anyone had any advice or similar experiences, or can just shed any light onto what now feels like a very big mess that has become my life!

10 years ago I was diagnosed with SLE. I'd been unwell for about a year with severe fatigue, up and down flu like symptoms, exhaustion, constant migraines, dizziness and nausea, terrible brain fog and just generally feeling shockingly unwell. I'd had glandular fever which seemed to set it all off and I couldnt seem to recover from it. Previously I had been perfectly fine with no health problems. (I was 21) For months and months the GP told me it was chronic fatigue syndrome and that there was basically no hope for me. Anyway, after going to a different GP and being referred to a rhuemotologist I was eventually diagnosed with lupus. It was a long time ago and i was young so my memory on test results isn't perfect but I think the ANA test was 1:600 or it could have been 1:800. I also had positive rsDNA but again I'm not sure what that was, or if its part of the same test.

I was put on 400mg of hydroxychlorquine and within about 3-4 months my symptoms had all but vanished.

Over the past 10 years they have had little ups and downs, I've felt the fatigue and migraine/dizzy/nausea come and go slightly, sometimes for a few weeks at a time but never for significant periods. After a few years I came down to 200mg a day of hydroxy. My ANA went back to being negative and stayed that way.

I had a flare up about 4 years ago where my ANA was about 1:80 so not particularly high but I did feel quite unwell. it settled down after a few weeks and went back to a negative result after about a month.

Its been up and down like this a few times at low levels over the past few years but never had massive significant amount of time in a 'flare.'

So back to the present! For the past 3 months now I have felt very very VERY unwell. For the first month it was like on and off flu like symptoms, I felt exhausted and so so unwell. My whole body feels a bit like its shaking all the time, like my legs are really weak and wobbly and I was finding myself having to lean against walls and things for support. I keep feeling very very light headed like I could pass out at any moment. I was also covered in hives/red hives like rash for about 3-4 weeks that I've never had before. I was beyond breathless, just getting up and down the stairs would leave me sat on the top step gasping to catch my breath. It seems to have improved slightly in the past month but I still get days where this is happening.

Some of the symptoms I felt when I was very poorly before lupus was diagnosed was this feeling like my arms and legs were lead weights, like I couldnt move them at all, even lifting my arms to open a door or pick up a fork was a huge effort. It could last for hours at a time, sometimes days. Ive felt it on and off over the years but the past few months its come back and is quite bad again.

I feel like it gets better for a few days and I can get out and about for a few days, manage to get a food shop done etc, but then i get poorly type feelings again and feel very shaky and unwell, and have absolutely zero energy levels. Ive been sick on a few occasions just for seemingly no reason. I fainted one morning too.

I've now had to quit my job and am incredibly upset and scared. I was put on steroids for a month which I have finished the course of now. They seemed to clear the rash which has gone, but not help any of the other symptoms.

Ive had ANA tests repeated but they were negative. My doctor says it could still be lupus but just not showing up in tests, but Im so confused as to why? And so worried it wont stop. Could it be that the hydroxychloroquine seemed to stop being affective for me?

I had my thyroid tested about 6 months ago and the GP said some antibodies were 'very high' but the function was still in normal range but that it would probably have problems in the future. I'm going to have the tests done again this evening to see if anything has changed.

My iron/heamoglobin levels also fluctuate between 9 -11 and never seem to get any higher. I'm getting them test as well today, but i doubt that will be the problem as they have always been low and I've always managed fine with that.

Vit D is also very low, but always has been.

My periods have also become utterly crazy with no rhythm or pattern and seem to just bleed randomly whenever they feel like it. They were always very very regular until about 8 months ago maybe. The doctors have said its probably due to the mini pill that I am on and nothing to worry about.

I'm just so terrified they're going to say its chronic fatigue syndrome again and write me off and I'm going to feel like this forever!! I really don't know what else to do! All I've done for about 3 weeks now is sit in the house and cry!!

[pmrkitty]

Hi, I've no answer for you but I'm sure some will be answering soon and will be able to help. I just wanted to let you know I will be keeping you in my thoughts and prayers, hoping for a complete recovery from all your symptoms and sending you hugs. Please keep in touch and let us know how things progress, we are here for you and venting is definitely allowed. I hope you have a smile today and are able to get outside for awhile and look at the beauty around you. Kitty

[Biddy47]

Hi SarahLuna, I'm so sorry that you are going through this, and sorry I don't have any answers for you, but I can identify with you on some of the symptoms you have in particular the weakness, shakiness, dizziness, nausea and fatigue which happens every time I have an infection and have antibiotics, and like you feel extremely unwell. I'm experiencing this at the moment 'cause I've had a chest and urinary infection it can take weeks and weeks for it to subside. I hope you get to the bottom of the cause and start to feel better.

Take care.

[whisperit]

Hello SarahLuna

Sounds rotten. And familiar! What dose of steroids were you on recently? And exactly when did you stop taking them? Did you notivce they helped with the shakiness, fatigue etc while you were on them? Is its possible you're suffering from a drop in normal cortisol production after your adrenals were (temporarily) supporessed by the steroids?

Can you think of any other possible correlations between your symptoms?

Do keep posting and maybe a plan will energe x

[Mandypandy1969]

i have been diagnosed with fibromyalgia but almost all the things you have mentioned i suffer with. i also had chicken pox soon after starting my first job, glandular fever at about 18 and inner ear infection when i was 23. i have also had a high immflanatory rate in my body for a long time. its 97 at the moment. also i have had 2 lots of liver function tests which have been higher than should be, got to go back again for 3rd time to get tested again and an ultrasound done. my stomach is large (look pregnant) and hard. wgen i eat it gets harder. i am confused too. i was firstly diagnosed with lupus and was put on hydroxy but i felt worse. then decided by rheumatology it is fibromyalgia but fibromyalgia isnt immflammation in the body. xx

[Krazykat26]

Hi SarahLuna,

Boy u have lots going on! I have been taking steroids for the past year and I seem to have a problem with stopping them..I usually start at 20mgs n then reduce by 5mgs every two weeks. Unfortunately when I drop from 10 to 5mgs things seem to go wrong again..my skin flares up and I feel very unwell..so I am now taking it more slowly..currently on 7.5mgs and have been for a month. Have got dermy appt at the end of Jan. In August last year he put me on ciclosporin which is an immunosuppressant..although I was terrified at the time and had real problems taking them I have now come to accept that they are probably helping.

I would agree with what Whisperit has said..it may be that u could do with longer course of steroids if they helped your symptoms..I know they have side effects and I certainly don't want to be on them forever but they do give me some quality of life back so it's swings n roundabouts for me.

Please don't sit on your own crying..talk to us..we know what you're going through n we'll help if we can.

Stay strong..u are a lupus warrior and it's at times like this that u have to fight your hardest!! Xx

[SarahLuna]

Thanks for the replies everyone.

I was on 20mg of steroids for 1 week, 15 for the next, then 10 then 5, so 4 weeks all together. I came off them about a month ago probably. I didn't notice them making much of a difference to the fatigue and shaking, the only think I noticed a difference with was the rash which has stopped now. I was worried that if something like a virus was going on that steroids would only mean it would take longer to get better? It's all the guessing and trial and error that gets me so down! thank you for your support, it helps knowing I'm not the only one!

[SarahLuna]

I also have another question that someone may be able help with. Can taking hydroxychloquine lower ANA count so that even during a flare the test is negative? And can new lupus symptoms randomly start years after being diagnosed? I'm really starting to feel freaked out by the shakey weak feeling in my legs. Could that be caused by lupus? My feet are also freezing cold, like I just can't get them warm even sat by the fire

[Kazbe in reply to SarahLuna]

Hiya SarahLuna

My heart goes out to you it must be awful feeling so bad and I can hear the fear in your post! If I were you go back to the dr and ask to see rheumatologist fainting not being able to feel your feet needs further investigation from a specialist and to give you the reassurance you need . You might be very low in iron and severely anaemic fainting feeling cold hopefully someone his medically trained on here might be able to advise you .

Look after yourself and I hope you feel much better very soon

Kazbe 😀 x

[SarahLuna]

Thanks for the advice. I've been back to the doctors with not much progress! Anemia and thyroid came back 'normal' 🙄

I'd not been too bad for a few days and managed to get some shopping done and things but the shortness of breath and fatigue is back today I'm also covered in the rash again! 😢 I feel like this will never end!