Am I going crazy: I have got my results for various... - LUPUS UK

LUPUS UK

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Am I going crazy

Carolha profile image
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I have got my results for various tests for lupus etc. and all came back negative. When I saw the rhuematologist last week, can you believe I was feeling a lot better, apart from the gallstones which I am waiting an op to remove. So, why? The swollen painful joints, depression, chronic kidney disease, I was put on vitamin d as I was deficient, loss of hair on my arms and legs.... To find today I wok up with painful wrists/fingers, ankles and toes, they have been worse, also feeling so hit sweat was pouring from me, my scalp has gone so dry,itchy and scaly my hair is starting to go thin again. So did my health improve due to vitamin d if so why do I feel I am starting to slip down into a deep hole again :(

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Carolha
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Loopylooby profile image
Loopylooby

You definitely aren't going crazy. You know your body better than anyone else. Your bloods will catch up with your symptoms eventually. I had single symptoms for many years and then in march this year I got the butterfly rash which made them refer me to a rheumy .my Ana was negative and continues to be. They diagnosed me with a lupus like condition and started me on the meds which have made the world of difference. Regardless of any diagnosis it is definitely something that is helped by finding out what ur limits are and getting plenty of rest. Keep pushing the gp for a referral x

Carolha profile image
Carolha in reply to Loopylooby

I got a referral from my GP, that's how I got my blood test done but Im not seeing the rhuematologist again until August. I've not got a follow up appointment until August. I've noticed others on here have said that keeping a diary is a good idea. Think I'll invest. I moved last October from west. Yorkshire to Lincolnshire, my last doctor treated all the symptoms as individual ones or "brushed them under the carpet". My new GP seems very good and it was the nurse who mentioned lupus and after I'd been on vitamin d for a while and my blood levels were back up the doctor referred me. Feeling dreadful thus morning and just wondering if my trouble with my gallstones, which is painful, is causing the rest of my body to feel as its going into defence mode? Hands swollen and hurting this morning, headache, feel as though I've got to drag myself out of bed, been having what I can only discribe as hot flushes, went through the change in my thirties so I know it's not that. Just waiting now to see if I sink any lower.

I was at my lowest last year, had a very stressful job which I always managed before , I went to the doctors on and off with one pain or another, blood pressure was high and I was starting to be sick ( looking back that could have been gallstones) my mind was loosing it at work and I had an awful feeling I wasnt coping any more. The doctor put it down as work related stress but I had a feeling it was more than that. He put me on antidepressants but things went from bad to worse my joint pain went from not just being in my ankles and feet but also in my hands to the point I couldn't cut up my food. The doctor tested me for everything then but everything came back negative and she said " have you thought of a change of lifestyle ". Went back and told my husband, who is retired, he said right let's do it. We sold the house, quite quickl, which was a surprise and we move to Lincolnshire, mortgage free and we live off his pension. I'm 54 and will look into getting my small pension later thus year.

The change as been great, I'm able to take things a lot easier, I know I'm fortunate in that respect but still don't know what's wrong with me!

Felt awful when the results came back negative as my husband, what do we do now? Felt like a fraud, even though he knows me too well for that. I feel so lucky in that I have him. Just wishing I had a life, so much change in such a short time and now my daughters returned home and I hate her seeing me like this , feel like crying .......

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