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hmn
06-15-2009, 07:19 PM
You may have read my other thread in Newly Diagnosed. Anyway after 11 years of suffering my doctor said he's pretty sure that I have Lupus, i have been treating candida and leaky gut for the last 7 weeks and when I see my doctor tomorrow he is going to look further into Lupus.

Anyway I had never heard of lupus until my doctor mentioned it at my last appointment so i don't know much. So sorry for all the questions. Things that I have just accepted as normal are started to make sense. Like feeling crap after going out in the sun, a sunburn rash on my nose and cheeks, feeling tired and achey, my lack of concentration (I use to think that I was just not very smart) and the list goes on. But there are a few things that I have never thought of until now that I'm wondering if they could be because of Lupus.

I have been getting this pain in the back of my shoulder near my neck since 2002. I thought I must have injured myself at work because I was a checkout operator in 2002, so I just assumed. It comes and goes and I have it now, I was in the sun all day on Sunday, what do you think?

A couple of other things. I get random bruises, for no reason, they seem to just pop up. This seems to come and go too. I have this ATM too. Usually the bruises are on my legs, 3 have pop up on my legs since yesterday. Also random pains, I'll suddenly out of nowhere get a pain, it could be anywhere on my body and I can point to the exact place it is at the time. I have come to accept this as normal, but now I'm wondering. I have been getting a pain over the last 2 days near my heart, I'm pretty sure it's not my heart but I will be telling my doc this tomorrow.

One more thing (so sorry for all the questions). Does anyone get headaches when they have a flare (is that what you call it?). I have been having mild to medium headaches since I was outside on sunday, todays is quite bad.

Hopefully my doctor will have some good answers for me tomorrow, I'm actually pretty nervous about my appoinment. I have read some scarey stuff about Lupus and I don't want to have it :no:

SandyR
06-15-2009, 08:00 PM
hmn, sorry to hear you haven't been feeling well. I wish I could answer you questions, but I don't have enough knowledge to know the answer. I hope you start feeling better sooner rather then later.

AyahsClan
06-15-2009, 08:49 PM
Hello and welcome to the forum. I can't imagine how much confusion you must be feeling along with the apprehension of it possibly being lupus. All of the symptoms you have described can fall under the lupus umbrella except for the neck pain. If it is on only one side it might be an actual injury as you have theorized. If it is spread evenly across both sides of the shoulders it could be a lupus/fibromyalgia issue. What I have found with any muscular/skeletal injury is that lupus exacerbates it. I'm so sorry you have been suffering for so long without a firm diagnoses one way or the other.

The good news is today there are so many more specific blood tests to find lupus and lupus related conditions. Also many more new drugs to help with treatment. Plus you will find a few simple lifestyle adjustments will offer relief, like a healthy diet and staying away from heat and sun exposure.

Don't be afraid, as someone named it (Rob?), it becomes our "new normal." I've had it for 24 years along with a genetic blood disease. It has taught me the virtues of self discipline and empathy. Oh, we all get down because it isn't a diagnosis we ever wanted, we all get scared, we all get angry and severely frustrated at the doctors and situation itself. But we are still here! Still living life with all its ups and downs.

At least you do not have to go it alone. This forum for one will brighten your day and teach you so many things. I learn so much here and have been so, dare I say; loved.

Knowledge is power and with that I hope you are able to get proper diagnoses, treatment, and a better quality of life soon.
{{{hugs}}}