Feeling unlistened to. : hi everyone, Hope you... - LUPUS UK

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Feeling unlistened to.

QueenBee1989 profile image
18 Replies

hi everyone,

Hope you’re all well. 2 years I go I had auto immune bloods done which came back negative. I had them done as I have 3 other skin auto immune conditions, lichen sclerosus, morphea and vitilgo. I’ve also had some symtoms that I worry about, I’ve had sharp chest pain that goes to my shoulders which is only short lived and I’ve had broken blood vessels around my ankles and I suffer with sore ulcers from time to time when I am run down. After the bloods came back normal it did help ease my anxiety having the bloods come back normal. I was worried about lupus or scleroderma with me having the morphea too. I also had a rash all over my body around this time too and my liver bloods was out and infection markers was raised but they put it down to a viral infection and the rash resolved after a few days. I tried to push it to the back of mind and get on with things. But last week I got taken really poorly and ended up in a&e and got diagnosed with pleurisy. They said my infection markers was raised and listens to my chest and gave me a X-ray. They also prescribed me some anti biotics. I didn’t know what pleurisy was and when I got home and googled the condition it said that auto immune disease should be ruled out, and that it happens to lupus patients. I am pregnant too. It’s the thought of having one of these auto immune diseases and no one knowing or taking my symtoms seriosuly. And then I go years without having the correct treatment. The thing is when I was in a and e they was so focused on the pain and the fact I was pregnant obviously trying to rule out a blood clot and I never mentioned my auto immune skin diseases as I never thought that was important at the time. I have since seen the gp as I still wasn’t feeling well and I have mentioned it to him and he said not to worry about that as the pluerisy wouldn’t be isolated I would have other symtoms too. He just told me to finish my anti biotics. I will add that my broken blood vessels have resolved since I have lost weight. And since before I had the pluerisy I haven’t had chest pain in a long long time. Back when it happened often I put it down to working a lot of night shifts and not getting enough rest!.

Do you think I am just worrying or do you think I should see how things go? Or should even push for further testing.

Thank you to anyone who takes the time to read and reply to me it would be so appreciated. I know I sound like an anxious mess. X x x

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QueenBee1989 profile image
QueenBee1989
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18 Replies
KayHimm profile image
KayHimm

Your concern is understandable, particularly with your other autoimmune conditions. Both your GP and the A & E doctors would have autoimmune disease as a differential and would have been looking for signs. I don’t know how they know whether it is from infection or autoimmune disease but blood tests may help and your GP says other signs would appear. I think that is reassuring.

The main thing is to let your GP know if symptoms don’t resolve after antibiotics or if you have additional symptoms.

Hope you feel better soon.

K

QueenBee1989 profile image
QueenBee1989 in reply to KayHimm

Thank you so much x

OldTed60 profile image
OldTed60

I could be wrong but I think your pregnancy hormones might skew autoimmune bloods. But once your baby has been delivered it would be worth reviewing.

Autoimmune diseases tend to improve during pregnancy so I would just hope that your pleurisy was an isolated event. Pregnancy hormones are so powerful. During mine many years ago, I had all sorts of strange and scary symptoms I never had before or since eg benign positional vertigo, 4 types of eczema from scalp to toes, spontaneous haematoma bruising everywhere which my GP worried was leukaemia but was actually just a mast cell response to all the scratching from eczema. A friend had recurring appendicitis only during her two pregnancies and finally had to have appendix removed during her second pregnancy.

Hopefully you’re being closely monitored anyway so I think, if possible, you should try to put your autoimmune worries to one side for now and see how you feel further down the line.

QueenBee1989 profile image
QueenBee1989 in reply to OldTed60

Thank you so much. I think I am going to try and put it to one side and see how things go. X

HiveMind profile image
HiveMind

Have you heard of Vasculitis? You have similar symptoms to mine (I have been diagnosed with Vasculitis). Tbh I’d insist on seeing a Rheumatologist so they can rule out whether it is or isn’t an autoimmune condition. High inflammatory markers (Eosinophils) are present with Vasculitis. I hope you find the answers to your questions soon.

QueenBee1989 profile image
QueenBee1989 in reply to HiveMind

Thank you, I’ve checked my recent bloods over the last few years and that marker has never been raised x

Willow7733 profile image
Willow7733

Hi! I was reading your post and thought I would say hello. I know that a diagnosis of lupus can take a while, my diagnosis came after 20 years of feeling unwell.

That said, pleurisy can happen to people without lupus (or autoimmune disease). You said your infection markers were up, and it could mean your pleurisy is caused by that. Have they tested for ANA? Any of the other autoimmune markers? There are criteria associated with lupus, has a medical professional gone through them and found you to have at least four? I say medical professional because people can read the lists on the internet, and are certain they apply to them. It is so easy to do. I have done it before. My best friend had swollen lymph nodes on her neck, and was certain she had cancer or rheumatoid arthritis. After some tests, it was found she had a virus. It is so easy to convince yourself that you have what you are reading about.

But, I am not a doctor. And I don’t know your case. I just wanted to say I understand the frustration of not getting answers. I hope you get them soon.

QueenBee1989 profile image
QueenBee1989 in reply to Willow7733

Thank you so much.. I do believe I do this, I think I’ve gone into a scary internet rabbit hole and googled and googled. Yes i have had a negative ANA at the end of 2021. And they also screened me for all sorts of different anti bodies I’ll have to put them on here. So you can see which ones. I have seen a dermatologist she was the one who put me through the bloods. My lichen and morphea have cleared up now so I have been discharged but she did say any problems then please come back to us. Thank you to being so kind to me x

Kddp profile image
Kddp

Hi, I think I would ask the doctor to refer you to a dermatologist or Rheumatologist. If your bloods are clear maybe they can do a biopsy on your rashes if you still have them. That's the only way they found mine through biopsy. At least you can have peace of mind and maybe get some treatment that's ok during pregnancy to make you feel better. Hope you get better soon

QueenBee1989 profile image
QueenBee1989 in reply to Kddp

Thank you the rashes are no longer there now. I have been under a dermatologist for a number of years but got discharged last year x

Loopyloo43 profile image
Loopyloo43

hi I would persist you know your own body , that’s how a lot of us get our dx I was dx 25 years ago with lupus and Addisons ssjogrens all these at the time never heard of them not knowing how any of this would affect me over time to today I had all the symptoms of lupus and on one occasion I had my bloods done which came back positive after many I may add and ssjogrens came at the same time Addisons was pretty awful to begin with I was told I was depressed and my scan was fine etc but eventually one morning driving to work i literally passed out and that’s how that came about I could have killed many on my way to work that day because the gps failed to listen ! Go with your gut persist if you feel there not listening keep a diary as you do for over time as symptoms change but I wish you well and good luck ❤️

QueenBee1989 profile image
QueenBee1989 in reply to Loopyloo43

Thank you x

kt11 profile image
kt11

Hi Queen Bee

kt11 profile image
kt11

Hi Queen Bee, I agree that you should go with your gut, ask for ANA testing. I wasn't listened to either and it took 13 years to get diagnosed with Lupus. All the very best xx

QueenBee1989 profile image
QueenBee1989 in reply to kt11

I have had a negative ANA screen already. Thank you x

michaellasmith profile image
michaellasmithAdministrator

Good afternoon QueenBee1989,

We would recommend you speak to a doctor if you are still concerned, have any questions or are still experiencing any symptoms/discomfort. They will need to know if treatments have been successful or if further investigation/treatments are needed.

I also agree with Loopyloo43, it would be beneficial (if you are not already doing so) to keep a diary to show to your doctors.

Let us know how you get on.

Warm regards,

Michaella

QueenBee1989 profile image
QueenBee1989

thank you x

Little_duck profile image
Little_duck

I get how you feel unlistened too.. I have majority of the symptoms of lupus/ss and a postive ANA test. But all my other blood work came back fine apart from Iron and vitamin D and liver they were either too low and my liver too high. They have now just classed it was fibromyalgia and too loss weight which there answer for everything.

I hope you will relax and enjoy your pregnancy and keep the stress levels down.xxx

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