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LUpus Patients Understanding and Support
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Lupus symptoms

Hi does anyone else suffer from swollen glands in neck and I heavy head feeling like your always on the verve of having a cold?

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Well mine where swollen around thanksgiving and I actually couldn't eat or drink and now I got lesions on my neck sores that itch and just irritated and lately feel like an electric shock and pop but I've found something to help which comes from grape seed made with weed from GNC and I hate to admit it is helpful

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Thank you 4 sharing. Thought it may have been all in my head

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i always seem to have flu like symptoms, headaches, stuffy or runny nose, sore throat now and then and swollen glands. I do seem to get the cold or flu quite alot since being ill

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Hi thanks for replying sometimes I feel like I'm going crazy like it's all in head.

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Many people report that they are made to feel that "it's all in the mind" which means there is a problem with "other people" ie doctors, family or friends either not understanding lupus, or not able to be empathic towards you.

Lupus affects multi-systems ie it can affect all bodily systems. Swollen glands is one of the symptoms of "glandular fever" and many patients report having had a diagnosis of glandular fever, or suspected glandular fever. Lupus can be triggered ie a lupus flare through a step throat infection.

Many rheumatologists are not expert in lupus, which is why it is necessary to have a lupus specialists. There are lupus specialists in the UK, US and many countries and therefore asking your GP for a referral to a lupus specialist is not a luxury, but a necessity.

It is a good idea to keep a record of your symptoms. Don't be put off when people suggest that you are "preoccupied" with your body. If you can, go back to childhood and record ALL illnesses, no matter how irrelevant you may think they are eg tonsillitis or anxiety/depression. If you can, date those symptoms.

With good wishes,

Ros

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Hi ros thank you 4 yr Reply. It's good to be acknowledged and have someone who understandings. My family are great but my partner not so much he has no understanding of my condition. He doesn't understand my tiredness my aches and pains the lows I feel. Nothing really. I also have auto immune hepatitis. But I don't think there sure If this was part of the lupus attacking my liver or what. I cried when I read your reply dont know why I guess it was nice that my feelings where acknowledged. Thanks x

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Many patients have more than one autoimmune condition, so your situation is not unusual.

I wonder why your partner doesn't understand. Sometimes, it can be difficult to watch a loved one suffer and not be able to do anything. This can lead to feelings of powerlessness and helplessness and sometimes this is hard for a man - especially if he believes it is his job to be the "man" and protect you.

Can you talk to him about this? For example, acknowledge how hard it must be for him to see you in pain/ill/tired and not be able to do anything.

THE most important thing is whether you and your partner are able to talk to one another - I mean really talk and be able to describe your feelings and he is able to put into words, how he feels.

Sometimes, people have difficulty in even recognising what they are feeling.

There's lots to think about and I am available to help.

With good wishes,

Ros

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I do try and speak to him but there's no point he just doesn't get it at all. I don't look ill it's a hidden illness. So I just dont bother anymore

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All the more reason to keep trying! Have you explained to him how upsetting this is for you? Have you shown him any information about lupus to help him understand? Taking him with you when you see the doctor is also helpful.

You can even ask him why he behaves towards you as he does and how this makes you very distressed.

Don't give up, even though it can feel disheartening! Many couples go through this and there are many reasons why he may be behaving as he does. The only way is to keep talking!

With good wishes,

Ros

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I can testify to that. When I'm out in the community testifying a lot of people tell me, I look healthy. I always respond, " you can't judge a book by its color, you're looking at a sick chicken but, I've been blessed."

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I feel the same way, sometimes. I suffer with SLE and Sjorgune's plus other diseases. I know how you feel. I Thank God for great my great doctors. A team who understands.

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How are you now?

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Hi ros yes I've done all of what you suggested to no avail. When I was diagnosed with auto immune hepatitis and was in hospital etc he was great but as soon as up and going everything's back to normal. No understanding nothing. So I no longer bother. Thanks 4 the advise x

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I am really concerned about your lack of support. You wrote that you cried when all I did was to reply, showing how much you need to be understood.

Have you asked your GP for counselling? Talking to someone face-to-face is much better than via a message system.

However, you can always talk to me here or on the LuPUS Message Board, which I think may be better because it is more secure.

With good wishes,

Ros

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Thanks I'm ok my family are great. But the lack of my support from my partners not and I've just accepted it is what it is perhaps with out my family it would be worse. I'm ok though just frustrated but I've learnt there's somethings I can't change that's life. I can do one of two things keep battling to be understood or get on with it and that's what I've done but thank you

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Hi Hunte - my glands are swollen today - I look like a bulldog. They are also very tender. After 2 years I would say it comes with the illness. Awful that you have no support from a partner. Do get to a specialist clinic - just look it up we ARE entitled - so keep demanding. Good luck

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Hi cas,

Yeah I see a specialist and spoke to them about the swollen glands and your right it's part and parcel of the illness. And the medication mycophenolate lowing the immune system. I hope you feel better soon. Thanks 4 replying

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Yes, I suffer with swollen glands around the neck and shoulders. I have had stays done but nothing found. At a follow-up appointment I told my Internal Medicine that I remember a doctor telling me that I had " Buffalo Shoulders" and will have them the rest of my life. So, I have tried to accept them. The swelling comes and goes.

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