Hi all.nso the rash never fully went away and then returned with a vengeance. Its worse and parts of it burn. I saw derm again this morn and she gave me ultravate ointment. She was very concerned about what rheumy has to say about the biopsies but I can’t get in to see him yet. Yesterday I started to feel terrible. Today I am useless. I’m completely depleted of any energy, very nauseous, all my arthritis is acting up, back pain and in the last few hours some really bad cramps (no where near having my cycle) but similar cramps. I really don’t know what’s going on and I’m concerned because I feel so crappy. I don’t want to go to the ER or urgent care and sit there for HOURS for nothing either. Has anyone been through anything similar? How do you know when a flare is bad enough to go to the hosp?
Hi Jen,
Sorry to hear it's coming back at you like this but to me it definitely sounds like a bad flare occuring and a flare can upset the stomach badly and i'd definitely go and see a doctor ASAP if it gets to unberable because with Lupus you can't afford to let symptoms pass you by...below is a list of symptoms that occur with a flare.
((Hugs Terri)) xxx
Signs and Symptoms of Lupus Flare
Be aware of one or more of these symptoms:
- Persistent fatigue out of proportion with what you would usually expect
- Persistent weakness
- Aching all over
- Fever, which may be slight to high (you can check your temperature yourself)
- Persistent loss of appetite
- Involuntary weight loss
- Increasing hair loss
- Recurring nose bleeds
- Sore on the roof of the mouth, which burns with spicy foods
- Unexplained skin rash anywhere on the body
- Hives
- Sores on the skin
- Painful joint(s)
- Swollen joint(s)
- Stiffness of the joints when waking up in the morning
- Chest pain which increases with breathing
- Shortness of breath
- Coughing up blood
- Persistent unusual headache
- Nausea or vomiting
- Recurring or persistent abdominal pain
- Persistent, increasing swelling of the feet and legs
- Puffy eyelids
- Blood in the urine
Jend719,
I, too, have had the cramping. I guess I didn't realize that it could possibly related, however in the last couple of years when things have been really bad (think constant flare) I just assumed I was in premature menopause. I suppose now I that I think about it, it does tend to coincide with a really bad flare coming on.
For me, when it feels like I am walking through quicksand I know that I am having a "bad" flare, rather than my constant. What an odd feeling.
I do my best NOT to visit the hospital. I have gone only when a cold turns to pneumonia, and breathing is difficult or when I have a TIA or when I had my stroke.
I guess what I am saying, is that it may just be a flare that with your meds may pass, but you know your body. If it is unusual or disrupts bodily function...it's time to hit the road.
Do feel better soon.
Hugs and Health,
DeAnn
Hello Jen,
How you keeping my friend...please update we when you can?
Terri :)
Vegas -“walking through quicksand”… That’s a good one because that’s soo true!
Tez- I’m ok I guess …thanks for asking. The rash is still running its course. Everyone always says stress makes things worse. It’s been one sh#t storm after another. My daughter who has been in recovery, has decided to go back to thedrug addict ex boyfriend. She started disappearing again. I can’t even get through one storm before another starts. I am going to visit family in Florida next week with my 13 yo daughter. I’m worried about the rash n the sun and just keeping up with everyone at the parks. Mostly the sun tho. My derm told me to use a special (expensive haha) sunblock called CeraVe with zinc. I bought more yesterday and will just load up everyday I guess.
Hello Jen,
The trouble with some rashes they take ages to move and sometimes you get another involved and yes Lupus thrieves of stress and depression and makes our symptoms alot worse...i can see why your stressed and sorry to say this there's no consideration by the sounds of things where your daughter is concerned and it looks like she can't cope with recovering...you know the saying "We all learn from our own lessons" trouble is she's up one dangerous road where the drugs are concerned.
I say you have got to be careful going to florida, all i can say and you've read many discussions is keep covered as well as possible...that's all you can do is keep adding it, sun block does'nt work for my skin the sun still eats through it and yesterday it was 31 here and my god dehydrated or what, all day on the water.
Thanks for letting we know how you are and keep letting we know until you go away.
Hugs & kisses Terri :)
Jend
I live in south Florida. Please understand that the sun this time of year is Brutal! I use vanicream for sensitive skin. It is a 60% SPF. But I also use SPF clothing and wear a hat as well. The sun causes me to flare anyway. The heat is a whole neither issue. Their is no Absolute way to have fun and protect yourself with the sun! Sit under shady areas and not in the direct sun light! It is possible but just be careful about what you are doing in the sun!
As far as your children go! I know it is a hard place for you right now! I am sure you raised them to do the right thing, but their journey in life is different then what you want for them. I agree that sometimes a lesson has to be learned the hard way. Don’t let them make you sick over the stress and pull you in. Turn all you worries over to the man above and let him carry the worry to keep them safe.
Also let me suggest that Perhaps you may want to seek some Counseling on the subject matter. Just remember one thing, addiction can’t be controlled by outside Influence recovery comes from within! All you can do is love the person for who they are and always have hope that they can change. I have lived with several family members with addictions, both alcohol and drugs. The hardest thing for me was to sit back and watch them destroy their lives, but through counseling I learned I could not be the controlling influence no matter how hard i tried and I had to seat on the sidelines and watch it happen! Today, it still hurts, but I can’t stop it! It is what it is!
Enjoy you trip to Florida and I am praying for the best… Deenie
Thanks Deenie. I’ve been in counseling for a little over a year. I really like and respect her. She’s been extremely helpful and supportive.