For me it started as Discoid Lupus and turned into SLE after years of doctors ignoring my symptoms. Before medication I got rashes on my arms and legs but I also developed cysts on my legs, and chest. Had to have a few removed because they kept growing and sometimes hurts.
The medication has helped but I do have a lot of scarring on my scalp and my hair is much thinner. The hair loss has slowed with the meds but it hasn't stopped entirely which is disconcerting.
I don't know if there is anyway to stop this condition and many people have the same problem. Do have to agree that the sun is our enemy even with sunscreen. Try not to stress as it makes things worse.
While not looking symptoms up on goggle or doing research can keep you from worrying, it doesn't help in getting a diagnosis. I let my doctors take the lead for nine years without any good results. They even sent me to therapy because they thought it was all stress related.
Two years ago I got a diagnosis and unfortunately damage has already been done. If I had started on medication sooner I might not have the problems I have now with my kidneys and my stomach. These are unfortunately permanent problems.
You are your own best healthcare advocate and if it requires you do medical research and try and figure out what is going on with your own health I say go for it! Don't worry chances are you won't find out anything that is too frightening and if you do at least you will be prepared.
Thanks for the support and good wishes. We just found out that it is a lot worse than originally anticipated, it's Multiple Myeloma. He may have to go through a bone marrow transplants.
His surgery site is healing and he seems to be tolerating the radiation therapy well. On to chemo sometime in the next week or two. It has been very stressful which everyone knows is not help to those with Lupus. I've lost five pounds this week and have a colonoscopy scheduled for next Tuesday. Oh joy!
On the plus side my odds of them finding anything serious must be less due to his Multiple Myeloma. Weird to think that way but it helps.
Unfortunately your rheumy can't handle all the problems that will come up with lupus. If your kidneys are having problems you will have to see a nephrologist. Dermatologist for your rashes and optometrist for your eyes. Each doctor does have a specialty but you can run things by your rheumy.
Don't let it get to you it does sometimes get better with time and medication. Stress can cause a flare so while it is hard to stay calm, try your best.
My life keeps getting better and better. This is sarcasm. My husband was diagnosed with cancer yesterday and is scheduled for surgery on Friday. They aren't sure if it has spread so he has a bone marrow biopsy on Wednesday of next week. He has been feeling ill for the past three months and been off his feet. I've been taking care of him.
His cancer and my lupus makes us quite the pair. There are times when we just look at each others and say "Oh forget it." to whatever needs to get done. I at least was able to make him happy with a lemon meringue pie. It's the little things.
If anyone has any suggestions on how to deal with a loved one going through cancer while the main caregiver has lupus and other autoimmune issues I would love to hear from you.
After the initial freak out from both of us we are working on trying to keep things together and brace ourselves for any bad news, which seems to be the norm nowadays.
Bummer, I was just looking into that myself. I'm noticing hip and knee pain on my right side only. Not my usual aches and pains all over. Something entirely new. I don't have bumps on my hands or feet but that does sound like RA, deformity of the joints. Looks like another doctor visit is in your future.
Lupus can certainly suck at times, it opens the door to so many other autoimmune issues.
I have had hemorrhoids since I gave birth to my first child. They kind of went away until about three years ago. They've gotten worse this past year. Blood and mucus in your stools that vary from normal BMs to diarrhea could be a condition called "ulcerative colitis." It is also autoimmune related.
You develop lesions on the inside of your lower intestines and this can cause pain on the left side of your abdomen, blood in your stool and diarrhea. On the other hand good old fashioned hemorrhoids can cause bright red blood in your stool.
Use cotton pads soaked in witch hazel to reduce the swelling of the hemorrhoid and it might help the bleeding. I notice that I bleed much easier but it could be the medications. NSAIDS can cause bleeding which is why they tell you to stop taking them before surgery.
I hope I offered some pertinent information. If it persists, please see a doctor as continuous bleeding can lead to anal cancer. My Dad had that after years of hemorrhoid bleeding.
You're so welcome. I'm glad things are working out. Having lupus can be tough and trying to get people to understand this misunderstood disease can be tougher.
It's hard to carry on when you've always been the one everyone relies upon. I know, I was always the go to person for both my family and my husband's family. It takes a lot of explaining as to why you can't keep going or need a break.
Unfortunately, you're going to have to work through this with your business partner. Keep the lines of communication open and don't close yourself off. Chances are all the stress of getting this business off the ground has caused the flare. Stress is particularly bad for causing flares.
People love to say they are supportive but when it comes down to actually inconveniencing themselves to help you out it is shocking how unsupportive they become.
My family, while saying they are supportive have offered no real help and yet they still come to me when they need help. Go figure. You may feel like a broken record always having to repeat yourself and explain exactly what is going on but you have to keep working at it. Hopefully he will get it eventually and if not at least you know his true colors.
I had ringing in my ears for quite some time and finally started to get dizzy. I had an MRI and they found a vestibular scwannoma in my inner ear. It is benign and will have to monitored in case it grows. I'm hopeful that it remains small but it does cause ringing, dizziness and sometimes pain in my ear. The ringing is the most common problem I experience. I also have a feeling that there is water in my ear or that sensation when a cabin is pressurized in a plane before take off.