I have read quite a selection of posts this morning and frankly it has made me rather scared of what is to come. Everyone seems so much more poorly than me! My recent diagnosis of SLE has come about via investigations over the past year into an inflamed nerve in my back and leg, which though very debilitating and painful for about 3 months is now under good control with Gabapentin. I do have painful joints and muscles but mostly at night. For the most part I'm ok during the day. I do not have the overwhelming fatigue so many of you suffer.
Does anyone else have this day/night contrast with symptoms?
Written by
bhomsie
To view profiles and participate in discussions please or .
Welcome to the forum. I was diagnosed with SLE ,other auto immune conditions when I was 67.You need to be aware that if people are managing ok with their illnesses they don’t usually post much.
Please don’t google ,you’ll frighten yourself.
There’s a lot of information on Lupus UK,also on the NHS website.tak care
Thank you Sue_petal. I agree - AI diseases are often almost as mystifying to some professionals as they are to the patients.
I had a telephone consultation with a rheumatologist to come to this diagnosis which was ok but has left me with lots of questions. Unfortunately I have to wait 3-4 months for the next appointment. Meanwhile he has sent me very good info about SLE and about hyroxychloroquine which he would like to prescribe for me. I'm sure that will be an interesting experience!
Hi and welcome. In answer to your question about day/night contact with symptoms I’d say I definitely suffer more at night with pain. It’s vital for me to get the pain as best controlled as I can so I can rest. I definitely think the more pain I have the more fatigued I am.
In response your concerns about what you are reading I’d suggest not to worry too much. Bear in mind people reach out often when they are struggling and want input from others who may have had a similar experience. I was diagnosed 15 years ago and also have Sjogren’s and Fibromyalgia. While I have had difficult times, they have been dealt with. I manage to work as a nurse 32 hours a week (albeit no longer in a heavy ward job), I have good friends and I remain mostly active.
Try always to remain in the moment and don’t worry what’s ahead of you. Continue to take good care of yourself and stay in a positive and healthy state of mind. The future will take care of itself. All the best x
Thank you for your welcome. You are right about people needing to share their struggles with people who have had a similar experience.
I am retired but lead a pretty active life so I am very encouraged to hear that 15 years after diagnosis you do too, especially with your other conditions as well.
Will heed your advice and enjoy each day as it comes!
Hi bhomsie I'm also newly diagnosed with lupus. I'm 63. It can be very worrying wondering what is going to happen. I've found this forum very helpful. It has helped me understand a lot. I agree with oshgosh dont look on Google I did and it frightened me so much and made my stress levels go haywire. X JCZW
Hi I'm still learning a lot. I was diagnosed in August after many years of pain and discomfort. The rheumatology doctor rang me from the hospital to tell me, as you can guess I was very scared. It's been an up and down journey so far but its early days yet. I also have an occupational therapist ring me every 8 weeks to help me cope with symptoms she has been very helpful. I found buying the books that lupus uk have are very helpful and easy to understand. XJCZW
Hi bhomsie and welcome. I think symptoms vary so much and what causes pain in fatigue in some might never happen with you. So many people here have severe symptoms that are debilitating and others have symptoms that are overlooked or negated by the medical professionals they need to help them. I am definitely in the later one. I think you will find comfort, support and laughter here whatever your symptoms. I would agree that my pain levels are far worse at night so I take Garbapentin to ease it enough for me to sleep. You will find what works for you too xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hi all, new here & advice needed please
Diagnosed Yesterday With SLE
Hi there, I'm new here and confused 🙄
First blog, recently diagnosed with sle, Hughes and pots syndrome this year.
