Pain is the new normal
I'm 35, single mother, payroll administrator near Philadelphia.
I'm not sure how long I have had SLE but in retrospect I could say at least 2 years. If I look back farther than that I can't pinpoint anything except fatigue and random/unexplained hand pain about 6ish years ago. But at the time I thought it was just one thing or another (and maybe it WAS just one thing or another).
The summer before last however, I began feeling knee and hip (mostly hip) joint pain with some joint pain in other parts of my body and extreme fatigue. Went to the doctor and was diagnosed with Lyme's disease (very common out here since we have deer ticks) but the (4) Lyme tests the doctor did all came back negative. At the time it made sense that it would be lyme although I never found a tick bite. I would have never thought that it would be anything else though.
That bout passed after a month and a half or so then had another time where I noticed hip pain and fatigue. Then spring of the following year I went to a tanning salon and began to get a rash on either side of my nose which I thought was strange because I NEVER get rashes…my skin really isn't normally that sensitive. I just sort of shrugged it off but decided to stop tanning just is case and I'm just not a big tanner anyway. But I do remember having at the same time the hip pain coming back.
I had gone to the doctor for the rash and she did some allergy test and they all came back fine (I'm allergic to almost nothing).
I will say that over the past two years I have noticed things like being sick more often than usual…not just colds but diarrhea and just feeling bad in one way or another. I have lost weight a bit and haven't been able to keep it on. Didn't drop a lot but it was enough to notice since I am prone to plumping up. I noticed hair loss and just sort of feeling "old".
This current bout began the beginning of October and hasn't really stopped since. I also have fibromyalgia, the Dr says, so I have been in pain in one way or another since. Hip pain, knee pain, extreme fatigue, chest pain, strange feeling heartbeat, hands swollen, headaches (all the time), hand pain, abdominal pain, muscle spasms. tight chest, pain when breathing in, I mean…it's all over.
I have actually forgotten what it's like to feel normal/good. Pain and discomfort has become the new normal. Some days I can barely walk.
The Rhem put me on a medrol dose pack (6 days) and MAN did that feel good but, as you all know, it is a serious medication with serious side effects so I am going to avoid that for as long as I can.
He has prescribed Cymbalta for the Fibro and Plaquenil. I JUST started the Plaq 2 days ago but am waiting on the Cymbalta. He wants me to begin the plaq first. I would prefer to only take just one if I can.
Since I have been learning about SLE I've noticed that I've had other symptoms that at the time I thought were just body stuff like rash on eye lids, sore on my nose, etc. little things like that. Beginning a few days ago I had new symptoms, wheezing, hoarse/tired voice...as you all know, the list goes on and on....
Thanks for listening
Welcome to WHL! We are really glad that you found us.
I am glad that you were able to get a diagnosis and get started on the plaquenil. Please keep in mind that it takes several months for the Plaquenil to really begin working but it should help some. Feel free to look around. There is wonderful information here.
I look forward to getting to know you and welcome to the WHL Family
Welcome to our family! Your story is not an unusual one for most of us who are living with this disease. I think that many of us have determined that we suffered from symptoms of the disease for quite a few years prior to our diagnosis. Myself, I remember the many symptoms, aches, pains, fatigue, etc. that I suffered from when I was in High School and I think that they were due to Lupus. However, I was not diagnosed until I was 35 years old. So, you are not alone and we understand your frustration, fear, and trepidation.
It sounds as if your doctors are at least being proactive. Tgal has advised you of the fact that Plaquenil is a cumulative drug and it can take weeks to months before you see substantial results. However, once the Plaquenil starts to work, it has worked quite well for many. I imagine that, due to the fact that it takes a while to work, this is the reason why your doctor wants you to start it first. Because Lupus is a systemic disease and due to the fact that you are also suffering from several overlap conditions, I do not think that you will be able to treat all of your symptoms with just one drug. Many of the treatments work together to provide you relief, so you may find that, like many of us, you will have to take several medications in order to get the results that will provide you with some type of relief. Also, you may have to try different medications and/or a different potency of your medications before you find a regimen that works for you and gives you relief from your symptoms. So, you may have to be a bit patient in the treatment of your symptoms.
There is a sticky here entitled "Lupus Medications" that you might find informative and that might help you to understand what the medications are for and why they may be prescribed. In the meantime, please feel free to ask us any questions that you may have and we will be more than happy to help you as much as we can!
Peace and Blessings
welcome to whl i am 47 and i was only diagnosed 4 years ago but new something was wrong with me in my teens. it is similiar for a lot of us here. i take plaquenil and it took 3 months before i saw the full affect of the drug i also take prednisone and mexotrexate it does take doctors awhile to work out which medications are suitable and which dosage you should be taking everybody is different some need higher dosage some lower and when you are flaring sometimes the doctor will increase your dosage. just remember we are here to support you and answer any questions you may have . even though we are not doctors we can share our experiences with one another.
It's so validating to read everyone's stories. And the support and encouragement is so comforting.
Thank you all, VERY much. I'm so glad I found this forum!
Welcome to WHL. I answered some of your questions about dry eyes on another thread.
My diagnosis was Mixed Connective Tissue Disease - with a combo of Lupus, Sjogren's, RA, Psoriatic Arthritis, with Meniere's syndrome, Raynaud's Syndrome and Spasmodic Dysphonia thrown in. One doc now thinks that my spastic leg muscles also point to Spastic Paraplegia.
I didn't get a diagnosis until I was nearly 50, but like others here, I think that I had some mild autoimmune symptoms when I was a teen. I was lucky that it stayed mild while I was having and raising children, but my symptoms have really been increasing since I hit middle age.
You've found a cyber family of people who understand here, and we'll be glad to listen and offer support.