[Ocean1]

Hi all

Wondered if some of you guys could help/reassure me?

So my symptoms are soooooo random and i wanted to know if this is normal for lupus or not? 8)

I get symptoms that last a few days/a week and then swap/change to something else, eg one week my legs are soooo weak and shaky then that symptom seemingly over night dissapears and my legs are fine and then i get something else eg really sore/swollen wrist and toe joints, then that dissapears and i get stomach issues, fever etc etc.......... and i have awful fatigue almost all the time.

Im just getting so confused and frustrated with these changing symptoms its like pot luck when i wake up to see whats gonna be wrong with me today!!
and i just seem to be going round and round in circles! :worried:
Is this normal for lupus symptoms to swap and change and be soooo random or am i just weird?

Thanks for reading,
Bex x x x x x x x x x

 

[greenhaggis]

Sorry to say Bx that 'youre just weird'

'Only joking' :lol:

I'm with you all all these different symptoms being random from one day till the next (or even on minute to till the next)!

I feel like i'm on a permanent Merry-go-round - hoping someday it will stop for me to get off!

Take care

Hugs!

Lesley

 

[Douglas]

Hi Bex,
I hate to break the news to you but you have described my experience pretty well: unpredictable, one d*m* thing after another, no obvious reason why it starts, no obvious reason why it stops, etc. SLE at least seems more arbitrary than particle physics.
So for me it comes down to "rejoice in the good days; accept the challenging ones; never give up; and stay grateful."
Douglas+

 

[Katharine]

Hi there,

Yes, my symptoms do do that to a certain extent. It was especially noticeable in the years before diagnosis and probably half the reason I could never really clearly get over to a doc what was bothering me!

Now, they do come and go, and also "travel" around the body, except when it gets very bad and they're all there at once!!

Katharine

 

[mooks]

hey i totally understand what you mean and ive said this to my rheumy and he says its normal and often what happens in lupus and we are not crazy! its like the pain flits around..one minute its my wrist next its my hip next its my ankles... next its everywhere!!random!!!!!! but totally "normal" in SLE...no clue why! xxx

 

[Phlox]

Me too!!

 

[LolaLola]

Dear Bex, To be honest you need at least one good friend either here or in "real" life, who you can talk to and who cares enough to remember what you have been through. I have a friend with Lupus, she often forgets symptoms she has had in the past and gets surprised and worried when they return. I am the same. We reassure each other. Lupus has so many symptoms, sometimes one will strike you out of the blue then vanish as if you had imagined it.
Believe me, you are not abnormal. If all else fails keep a brief diary. When you look back on it you will be surprised at things that happened and you then forgot about.

All the Best to you,
x Lola

 

[rachna]

Right there with you on that one! they are very random!

Used to question it n wander if i was a hypochondriach - but your not, its just the crazy world of lupus that we live in!!

Love always
rachna xxx

 

[Ocean1]

Hi everyone

Thank-you all so much for your replies

I really do appriciate it, I guess im just gonna have to learn to live with this weird condition :hehe: and all its confusing changes and ups and downs

At least i know im not alone now So thanks all again,

Hope your all as well as possible

x x x x x x x x x x x x x x x x

 

[KarolH]

Hi Bex and know that your not alone.

This happens to me too. One day it could be one thing and the next day something totally different.

I have learned to take the good days and run with them. If I get through a day without any issue I get down on my knees at night and Thank God for a good day.

Lupus is a roller coaster ride of sorts.

 

[SingleGirl]

Well, I certainly don't want you to have lupus... so I'll play devil's advocate and say that there are MANY things that could cause all of those symptoms.

That being said, regardless of the cause, I know from experience how hard it is to live that life of random illness.

Right now, in this moment, I'll try and list everything going on with me over the last 24 hrs.
Keep in mind not a single person in my life even knew I was feeling poorly until 6 pm tonight when I told them I wasn't coming home for Christmas tomorrow b/c I just felt too yuck.

• nausea
• can't eat or drink more than a few sips at a time (full/backed up)
• burning sensations in my tummy
• pain/pressure in lower right side
• eyes burning/pain/dry (my typical fever symptom)
• headache pain (i'm lucky, my headaches are SO rare)
• general stiffness/pain
• hip arthritis has been acting up for a week, about half of my steps are incredibly painful, have to hold on to things to move sometimes
• just smaller than ping pong ball cysts on wrists, restricted movement
• bad tooth issues/pain
• urge to pee every hour this past week, painful
• weight gain despite lower food intake
• absolute fatigue
• shortness of breath, pain, and coughing all week
• migraine earlier tonight (very rare for me)
• nosebleed earlier tonight (very rare - prob b/c of migraine)
• always overly mucousy - i have to even blow my nose while eating
• super bad face rash (holiday party photos from last week are down right embarrassing)
• lots of cognitive confusion (just finished grad school, lost my words a lot, hard to process/concentrate)
• unable to sleep (I never sleep, one of my most frustrating symptoms)
• i broke out in hives last night
• pure liquid BM yday

Yay. Exciting, no? It sucks the worst because I can't tell anyone... can't complain. Other people get to say, "I'm sick" or "I feel bad" but if I said that every time I was sick or felt bad... well, it would be high school all over again. The only thing I was ever mocked for was for being sick... and they teased me relentlessly about my absences, about falling asleep in class, about being so tired, about being so sore, about the confusion, etc.

Good luck with your symptoms, I hope you feel better soon.

 

[Bullwinkle]

I'm with you and the others....pain moving around my body , and in varing degrees of intenity is common to me. One minute I feel like I should go to Emergency with chest pains then as I'm concentrating on them they taper down and my hands or thighs or other body area takes center stage.
We are our own 'entertainment center' of pain monitoring.... 'cept it isn't humerous.
Good luck with yours..