Diagnosis: Hi to you all😀 Today after one year of... - LUPUS UK

LUPUS UK

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Diagnosis

margaret3 profile image
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Hi to you all😀 Today after one year of waiting for an appointment with reumathologist finally I have diagnosis. They said I don't have Lupus because my organs not involved. Doctor said I have connective tissue disease in the future I could develop Lupus but hopefully I will not. My GP diagnosed me with fibromyalgia and I have IBS as well. Well at least I have a name for it.

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margaret3
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Natura profile image
Natura

Sorry Margaret. Please stay on site. You can get great support here and very helpful insight. Take care!

Patricia2015 profile image
Patricia2015

It sounds like you have UCTD. There are some members here, including me, who have an UCTD diagnosis.

margaret3 profile image
margaret3 in reply to Patricia2015

Hi yes Remuathologist said I have UCTD. Can I ask how you coping with pain everyday. I'm doing everything as usual at work I don't wanna show I'm weak just one person from my work knows what I have. I know maybe I'm doing wrong thing but I hate to show other people that I'm weaker some days.

Patricia2015 profile image
Patricia2015 in reply to margaret3

Margaret, it is not easy and it depends on the source(s) of the pain.

When it affects my joints only celebrex/celecobix helps. When it is in my muscles, tendons and/or soft tissue I don't take a painkiller. I get used to the pain more and more. When it is too much and my hubby is home he massages me and rubs voltaren emulgel in my tissues. Very painful but better after that. If that doesn't help and I cannot sleep I need to take a celecobix.

My pain is stronger if I have done "too much" which is not too much for a healthy person but is for me.

My pain is also more bad if I am exhausted. And I feel exhausted every morning when I wake up so it is difficult to tell when I do too much. I usually notice it when it is too late.

At work I usually walk as a stiff eighty year old and I can only walk on semi-orthopedic shoes and type with wristbraces so they do notice things on me.

It is not easy to pace ourselves or to live with chronic pain. It is not easy to feel judged by others. But I'm continously learning to deal with it and it gets easier.

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