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Hi everyone,

I am been feeling pretty ill lately with various things going on....
1. High blood pressure, which i started medication for a couple of weeks ago
2. Diziness, again im taking medication for this.
3. Pains in my ears, GP said little ear infection for which he gave me drops for
4. My heart is making strange whooshing noises, for which the GP has requested a heart scan.

I was diagnosed with lupus 7 weeks ago but am not yet taking medication as the doctor wants to sort bp out etc etc before i start them.

I woke yesterday morning and was very achey and stiff in my whole body, it took me an hour of so of moving around to ease this. I suddenly felt weird in the head all kind of fuzzy and then extreme fatigue followed.

I was unable to get up and move around at all as i was so so tired. My hubby was concerned and rang the emegancy docotr, after 5 hrs of waiting for a home visit from the doctor i rested and felt a little better but still tired. I eventually got a call from the docotr asking for me to go to the surgery.

This i did and he checked my bp, said it was high but not awful, heart, he said it was still amking odd noises but didnt think it anything to worry about, he looked in my ears and said there was no infection.....i explained i had lupus and he just said oh seems you may need some blood tests.

Off i went home as i am waiting on results for bloods i had done last week. I had a good nights sleep and woke with exactly the same thing today, stiffness in the whole body and a feeling of extreme tiredness.

Soirry such a long post but im hoping anyone/someone wil be able to relate to these feelings im having. My doctors appear to be leaving me to get on with it and nhey appear to be uninterested.

I feel sorry for myself but more sorry for my husband and kids as i just cant manage to even make a cup of tea. Feel like im a waste of space.

Jane
 

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Hi Jane,

Please dont feel like you're a waste of space because you're not. You're very new to lupus as im i and i've found one of the major problems to be fatigue and feelings of helplessness. I'ts all part of the disease apparently according to my lupus nurse, doesnt make it any easier though knowing that.

Who's treating you at the minute because if it's not a rheumatologist then i would ask to get referred to one straight away o they can get you started on treatment as soon as possible.

Lupus is a scary disease and theres loads im still learning about it. There are a lot of people who have never even heard of it and unfortunately even some doctors are very vague about it which makes it more difficult for us patients who have it.

Please fight for treatment if you have to, i know it's very hard when you're feeling so ill but if theres one thing i've learned about having lupus, i'ts that you get nowhere with some doctors if you just accept what they say, you know your own body better than they ever will and you know when somethings not right so please dont give up and we're all here for you whenever you need us. This is a fantastic site with wonderful people who all know what you're going through so please dont keep thigs bottled up as theres always someone who can help.

Wishing you all the best

Love Gail xx
 

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Dear Jane, Somebody pulled your electric plug out then? I used to get like this a lot in the early days,it is very, very inconvenient. These things do improve a lot when you are settled on treatment. Also don't underestimate the psychological adjustments your body is making to your diagnosis. That can be extremely tiring. Is there anything at all we can do to help. Do you have a good family to support you? How has Hubby taken it- they usually are beside theirselves with worry.
x Lola
 
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