Daily exhausting pain and immune disorders

I have Lupus and Hidrinitus Supparitiva
Two autoimmune disorders
Took years to get diagnosed
My diseases have progressed to the point where a few months ago I started a biologic to sure my immune system to hopefully better manage my symptoms
For many years I was told it was all in my head
Once I received the diagnosis it was validation
But on days like today when my pain level was an 8
And I’m working my regular remote job and watching my 5 year old, 2 year old, and 7 month old grandsons because my sister who was supposed to watch them canceled very short notice
From 4am to about 2:30 my pain level was an 8/10 and now it’s finally down to a 4

this is exhausting
So frustrating
So draining
There are days I just want to give up because the pain is too much

Hey, it's good to hear from you, you haven't posted on the forums for a long time.
I'm sorry you've got these conditions, but I'm glad you at least have a diagnosis now.

I hope something can help.

Sending hugs if you would like hugs

Hi. I immediately clicked on this thread because I also have chronic conditions and chronic pain and I do really relate and understand what you mean. Being in pain constantly is exhausting. It changes you. Sometimes I hate myself because I feel like my body betrayed me- like I get angry in a “we had a chance to be good and you ruined it” kind of attitude? I wonder if you can relate.

All that being said, I know how hard it is to be in pain day in and day out, and I know how challenging it is just to get up some days. I usually hate when people say this to me- but it takes a lot of courage and bravery to stay here. I’m glad you’re here. I hope you can find some relief someday,

It’s good to see you!
Hugs
I just have not had a lot of energy
For much of anything

it helps to talk about it
Sometimes… no almost always I feel like I should not talk about pain, symptoms, etc
Invisible illness are so hard to navigate and so hard for people to understand what they can’t see
I’m also almost passively angry to have to deal with all of this because there is a link between immune disorders and trauma

I’m a fighter though but really struggling right now

I'm sorry it's been like that.

Do you feel any better during the Summer? I think you last posted during the Summer, so I wonder if seasons are a factor for you.

Summer is actually my most favorite season but my hardest
Because of the disorders and the medication I’ve developed an extreme sensitivity to the sun
I’ll break out in sun hives and it will me physically sick
I do a lot of kayaking, horse back riding and biking but now I’m only supposed to go out before 10am and after 4 pm
I wanted to set a goal to kayak 150 miles this summer… I did 134 last year but with the increase in pain and sun sensitivity I’m not sure it’s attainable
And it makes me so upset because those three things are huge for managing anxiety and depression

It's terrible that your enjoyment of the Summer gets taken away from you like that.

Is this like joint pain? It's ok if you don't want to answer, I'm just trying to understand.

I guess I can't help you. But please accept my sympathy.

Just sending so much love.
I really hope the biologics help....
And. Hi friend.

@PhoenixLady; I’m on one myself and it’s done wonders for me. I hope it does for you as well.

Joint, muscular and bone pain
Sometimes the way I try to explain it is… you know how you feel when you have the flu and someone can just barely touch you and it hurts
And still hurts with every breath and movement
That’s what a bad flare feels like

Hugs

I’m only into month two of my injections
Which are pretty painful to take
This is my second flare since starting the medication
I was told it might take 3-6 months before I could get the full benefit

Pho, I did not know this about you. I am so sorry you experience so much pain. I hope the injections bring some relief. You certainly are a strong soul for persevering as you do. And taking care of grandkids, spending so much time in the outdoors you love. Helping so many others with your job. Hope you give yourself credit for it all.