Posted 10/20/2017 8:47 PM (GMT -7)
Good evening everyone, hoping this post finds you doing well.
I have some questions about symptoms I deal with now and again.
It is hard to sort everything as like many I have lots going on.
But I do have a great rheumy and she has told me several times in the past couple years that the symptoms seem to her more to be about fibromyalgia not lupus.
It makes sense as I have lived with lupus for many years and these symptoms are different, and I have never been taken down before the way I am now.
So I will try gather some insight and then go back to my doctors for clearer answers.
My rheumy had told me I had fibro years ago, but the symptoms were
always just painful pressure points and stiffness especially in the morning. Although not much fun it never stopped me, I could get relief from my own tool box. Heat packs, cold packs, regular Tylenol and rest.
But life has been very difficult the past four years of my life, with too much grief, too much stress, to much work.
I believe I am paying the price now with much more difficult symptoms.
One I want to ask about is about heat. Terrible burning heat.
And I don’ understand what it is or where it comes from or why.
My body gets on fire deep inside. It comes on out of nowhere.
Sometimes it comes on from doing to much, like those times when life gets away from you and it feels like you are on a treadmill you can’t get off. Another thing that can bring it on is having to stand or sit too long, like waiting in a line up or sitting waiting for an appointment.
The hot sun can do it too. And blue light.
Finally and maybe the worst is going to bed and laying down, even if I have fallen asleep it can wake me right up.
What happens is that my spine seems to heat up, very deep inside and like a furnace that has been cranked way up. It goes right up into my neck and into my head. My hands and feet get affected too, very hot and burning.
Then my soft tissue can start, not as deep more on the surface, to heat up and eventually just ridiculous pain and stiffness starts everywhere.
From the slightest touch.
Usually my cervical spine starts to hurt way up where my head meets my spine, then the headaches come. They are fierce. My vision is affected, kind of blurred off and on. My balance changes kind of dizzy and spacey and cognitive issues start. Memory loss, word loss, multi tasking goes out the window. That’s when I disappear. I am not myself anymore. But I know I’m not gone I will just be lost for a time.
There seems to be a kind of shortness of breath feeling in my chest, that comes when the heat comes and travels from my lower back up my spine and I can feeli it in my chest too.
This can suddenly just happen, I’m feeling fine then suddenly just terrible heat and then all the rest and I’m a mess.
Well I hope I have described this in some kind of order that is understandable and I don’t sound like a nut.
I don’t know how else to describe it...... maybe a traveling, prickly electrical shock? It can make me tingle and kind of itchy too.
Thanks for listening, tuffymason