Does it ever get any better

[amy1808]

OMG I don’t think I’m ever going to feel normal again . I don’t understand what is going on with my body at the moment. Having a really rough patch , right side feels like lead , head is mush , can’t concentrate, headaches, nausea you name it I have it . My INR is in range . 2 months ago things were ok well as well as they could be then this has kicked in . I just feel like a time bomb and boom something bad and irreversible is going to happen .

Does anyone else feel like this or am I going mad . Flipping eyes blurred as I write this 😭

[lupus-support1 Administrator]

I am very sorry to read this and I can understand you are feeling so wretched that you can't remember how it feels to be "normal!"

Can you remind me ie give me a brief synopsis. Have you been given medication? Sometimes this can take many weeks to "kick in".In the meantime, can you go and talk to your doctor how you are feeling?

The other things is whether you have support from family and friends so you can tell them how you are feeling without worrying whether they can take it!

With good wishes,

Ros

[amy1808 in reply to lupus-support1]

Hi Ros

Only Warafrin as yet , I see prof Bruce on Wednesday thank god , my haematologist who I saw last Monday said I should be on immunosuppressant meds . I was seeing a local rheumatologist for around 18 months but he was useless did absolutely nothing . It was only after a visit to see prof Hughes team that things have started moving .

Work don’t really understand and getting time off is a nightmare , I work full time but I honestly don’t k is how long I can continue. Don’t really have any family and my friends have become very distant since I got I’ll in 2015 , just me and my daughter who has had a transplant so she is up and down health wise . Luckily I have a very good ex husband x

[lupus-support1 Administrator in reply to amy1808]

Yes. It does. Prof Bruce has a good reputation! I went through 6 rheumatologists - my parents kept insisting - eventually I found Dr Hughes.

I am glad you have your ex . . . but if you need to talk, you can contact me anytime. Please let me know how you get on!

Ros

[amy1808 in reply to lupus-support1]

Thanks Ros x

[Hidden]

I used to get that all the time. It does get better. How long have you been diagnosed with lupus? What medications are you on? I am not an expert but I am empathetic

[amy1808 in reply to Hidden]

Hi mister E

I had my first TIA in February 2015 , it took 12 months to diagnose me but in the mean time I had quiet a few more TIA’s . I was finally put on Warafrin and now take Amitriptyline at night 10mg . I went to see a Professor Bruce at Manchester Royal and he thought I had nerve damage due to the amount of TIA’s hence the Amitriptyline and date I say it , I feel much better 🙊 since starting them . I get the occasional spinning head and limb weakness but nothing like it has been 🙏x

[Hidden in reply to amy1808]

That’s good to hear