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Life With Lupus

Hello Everyone


#1

This is definitely a first for me but here goes.

A little history about myself. I am 44 years old, married for 26 years and have 3 great kids who are 24, 23 and 16. I love my life and have a great support system at home but I feel they really can’t understand what I am going through yet since I really don’t know myself. Everyone seems to walk on eggshells around me and that scares me senseless. Is this normal?

I was recently diagnosed in April so my brain is still processing all of this. I have had the last couple years with gastro issues, swollen joints, rashes, loss of hair and just pure exhaustion. I went to my doctor several times and always got the same song and dance. “You just need to rest” well I was tired of this answer so I got a new doctor and right away she ordered extensive blood tests etc. Everything was off the charts and once she received my records from the other doctor all my tests and blood work from the last 2 years were bad. I started on the medication in April and I don’t know what to expect at all.

I hurt all the time and it takes everything I have to function daily. I am finding things that I loved to do just don’t really appeal to me anymore. I can’t sleep at all and I am so exhausted.

Please tell me it gets better or somewhat manageable.


#2

Hello bsmith, and welcome to the lupus community. Being newly diagnosed is hard for everyone, and everyone in the vicinity. I have a chronic rare disease (not lupus, I have psoriatic arthritis) and I remember well that period immediately after “the verdict” coming down. It’s tough.

The good news is that, yes, you will get your head around this and it gets better. Chronic pain, though, can really cut into your sleep and it sounds like your fatigue is making it all worse. Please go to your PCP (sounds like you have a good one now!) and ask for some help with sleep. I used the search feature on the site (magnifying glass to the left of your avatar, near top right) and found a thread which you might find helpful. (Just click on the blue printing.)

Lack of sleep from chronic pain is something that a lot of people with chronic diseases have. I had it too. Although doctors are generally reluctant to prescribe sleep medications, in your case they may give you something short term. Something else that is often done, and is very low risk, is taking either amitriptyline or trazodone (both very old anti-depressants) at night to induce sleep. This solution usually works very well, without the habituation risks of sleeping pills. You might want to ask your doc about that. Being able to sleep at night makes a huge difference to how well you cope during the day!

I guess the good news for you is that you have a diagnosis. It’s not nice news to get, but at least knowing what you have brings with it the prospect of feeling better.

All the best to you! We’re glad that you found us, and hope that you will be too.

Seenie from Moderator Support


#3

Welcome to the group. My family did the same thing when I was first diagnosised. Drove me crazy after a while things got better. It took a while to straighten out my meds but things did get better.