Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Yep, there is that list of 11...mostly for a diagnosis (4/11) but I was wondering if there were some other common (and less common) symptoms people were experiencing.
I do not have a solid lupus diagnosis - I likely have "mild lupus" as per my internist (or MCTD) - my IgG deficiency and plasma injections make my blood work atypical. I have been on plaquenil for 5 months but this wintery weather coming in is killing me...the typical painful joints & muscles, fatigue, brain fog. What other things (other than rashes) do YOU attribute to lupus ????
I get headaches, feel dehyrdated despite drinking lots of fluids. Tylenol usually helps the headaches.
I get dry blurry eyes here & there - affects my vision a bit (and usually worse when I am tired).
Tummy upset & bloating - I am gluten free and mostly dairy free but for no good reason my GI tract gets grumpy....and it has been thoroughly checked out !!
I get itchy..no rash.
The one that bugs me lately is that I feel like I am coming down with something regularly - stuffy nose or raw sinuses, sore throat and/or chest. Everything 'runs clear' and I don't usually get something - I am beginning to think I should get my lungs checked out. This feeling of 'coming down with something' seems to coincide with pains & weather changes.
As to the butterfly rash...nope, I don't think so but sometimes the outlines of my nose get a little red - between my nose & my cheeks, from my eyes to where my nose flares out...not sure if that is a mild one or not.
Oh yes, the weather changes. Ouch.
I'm sure there is more....feel free to add...
I do not have a solid lupus diagnosis - I likely have "mild lupus" as per my internist (or MCTD) - my IgG deficiency and plasma injections make my blood work atypical. I have been on plaquenil for 5 months but this wintery weather coming in is killing me...the typical painful joints & muscles, fatigue, brain fog. What other things (other than rashes) do YOU attribute to lupus ????
I get headaches, feel dehyrdated despite drinking lots of fluids. Tylenol usually helps the headaches.
I get dry blurry eyes here & there - affects my vision a bit (and usually worse when I am tired).
Tummy upset & bloating - I am gluten free and mostly dairy free but for no good reason my GI tract gets grumpy....and it has been thoroughly checked out !!
I get itchy..no rash.
The one that bugs me lately is that I feel like I am coming down with something regularly - stuffy nose or raw sinuses, sore throat and/or chest. Everything 'runs clear' and I don't usually get something - I am beginning to think I should get my lungs checked out. This feeling of 'coming down with something' seems to coincide with pains & weather changes.
As to the butterfly rash...nope, I don't think so but sometimes the outlines of my nose get a little red - between my nose & my cheeks, from my eyes to where my nose flares out...not sure if that is a mild one or not.
Oh yes, the weather changes. Ouch.
I'm sure there is more....feel free to add...
The symptoms you describe seem to be quite "normal" Lupus-symptoms. I had them for many years as well.
For my dry (!) eyes (with me it is due to Sjoegren's syndrom and Sicca syndrom, which are "usually" going with Lupus "hand in hand"), I use twice every day an eye-lubricant. There are many different one's and the most important point there for me is that I use only an eye-lubricant without any preservatives (!) or additives(!) because of my over-sensitivities and allergies.
For "my" itchiness I use every morning after my shower a cream all over my body to keep the itchiness "at bay" and it works perfectly well. Whenever any itchiness bothers me during the day, I use "religiosly" instantly a little cream on that spot and it goes away. Therefore I always have a little cream bottle in my handbag. No compromises there... Make sure the cream has no additives, no colour and no parfume because any of these could cause you to suffer an allergy or side-effects.
You talk about "solid Lupus diagnosis" ? Lupus is very difficult to diagnose and it took me many years to "get there" with a diagnosis. I reckon I was born with Lupus and MCTD and Sjougren's and Sicca and some other connective tissue diseases plus a very compromised kidney function. It took very long to diagnose me, because Lupus (and MCTD, (a connected disease to Lupus) is very difficult to diagnose and I "only" got my diagnosis when I was in hospital, unable to move and in a terrible state. Of course I was in a very "big" flare-up and the Lupus diagnosis was therefore "easier" to spot by the doctors, in fact it almost "screamed" at the doctors and because of that, diagnosis came easier.. . Unfortunately that sort of experience happens to many Lupus-sufferers. Many have to wait very long for a diagnosis, because Lupus mainly can be diagnosed in a flare-up...
Before I was diagnosed I went ever so often to doctors with all sorts of typical SLE/MCTD symptoms and the doctors were unfortunately totally overchallenged and at a loss. They could not diagnose or help me and they could not even do anything for me either. That was very frustrating because except for me or my husband nobody really believed me because I always pull myself together and therefore I don't give out the vibes how poorly I am. "My" Lupus was only finally diagnosed when I was in hospital, unable to move and unable to do anything anymore. I practically had reached the end and I was completely exhausted from my struggles.
I do hope you don't have to wait so long for your diagnosis and I wish you the best and good wishes from
Kristina.
Adding to what I have written before, I thought it might be an idea to add, that it has become for Lupus/SLE-sufferers increasingly difficult to eat the right food to which we are not allergic to..
since I was a teenager I have been a vegetarian, but even as a strict vegetarian I still have to take great care to make sure I buy the right food of the best quality. It seems at first a bit complicated at first and pre-cooked food from any shop is "out", any vegetarian fast-food is "out", not every vegetarian food is alright etc.and I have baked my own bread for many years.
It is a bit difficult to start off with all that, but after a little while the body reacts favourably and we get rewarded by suffering less flare-ups.
I do wish you good luck and hopefully you find your way in 2015!
Best wishes from Kristina.
But my good diet, water my only beverage, lean protein, tolerated veggies and fruits gluten free, dairy(lactose intolerant) and sugar free off an on through the years and constant for over a year may be helping me with symptoms.
I started Plaquenil and only had mild headaches. Nothing else, it is like my body said OK finally something that I need. Or it could be because of my advanced age and post-menopause (hormonal)I question without a positive diagnosis taking Plaquenil is the best med for your condition. It is like taking a pain pill when there is no pain...it will give you all kinds of feelings I hear. But I have pain so when I take a pain pill it goes right to the pain and attacks.
You sound very knowledgeable and have a healthy diet I hope you feel better soon. I would try to get a for sure dx.so you can get the right treatment. There may be another medication that works better.
I have been on Plaquenil the same amount of time as you and it is working great. I still can get a flare of joint pain though (if I stress out too much).
Heron