For a long time, my joints have become progressively stiff and painful. It started in my hips, showing arthritic changes, then knees and now my shoulders. I have limited range of motion when my shoulders have a flare up. When walking, my hip will lock and to my horror, if I have to bend down sometimes my knee will lock and I can not get up.
I have been battling fatigue and have always ran low-grade temperatures. Nothing specific to pin either to. I'm 51 and have had 7 major surgeries over the past 17 years, one in 1990 and the bulk of the rest from 1999 until present date with two more surgeries to go through. Three of the 7 were for tumors...salivary gland, brain, and thyroid...there are 4 lesions/tumors in the remaining left thyroid.
I have fought with recurrent bouts of pleuresy. This has left scarring to my lungs, mainly my left, which has made it difficult to do activities such as walk or ride my bike for any distance. Persistence at this point hasn't seemed to help any with lung capacity. Some of the pleuresy I am sure are environmental from my last place of employment...but, it is also an inflammation rather than pneumonia.
The epidermal lupus have made me literally allergic to the sun. I will start burning within a short period of time, within 15 minutes, I am red...after a while instead of a burn, I break out in like hives. I stay red pretty much all over. I do not have the classic "butterfly" red rash across my cheeks. The epidermal lupus was biopsied from an abnormal reddish-brown spot on my breast. Since then, I have had three more of these appear across my chest..thus far none have gotten as big as the first.
I haven't noticed any major thinning of hair on my head...but, I have lost most of the hair on my arms and my eyebrows are disappearing. I really don't have to shave my legs anymore...if it stays like that, I'll be happy. I'd like to keep my hair. I told God that while He knows the number of hairs on my head, I didn't want so few that I knew them too!
It is hard for me to separate Lupus now from the Sjogrens Syndrome. I suppose the Sjogrens is mostly connective tissue, which has exhibited itself in my fingers as a hard almost bony protrusion, whereas the rest of my joints have inflammation within them...I was told the cause of them locking up on me.
I also frequently get blisters in my mouth. These were always more apt to come out during times of stress, along with Diverticuli bleed-outs. This can now be attributed to either the Sjogrens or Lupus.
The Sjogrens has left me with very dry eyes, dry vocal cords, dry skin, always dry throat and always thirsty. I choke easily while eating if there is nothing to wash it down with...especially breads, cereals and fiberous vegetables. I used to think it was from the thyroid tumors. The choking was one of the main reasons I made the appointment with an ENT, and then I discovered the lump in my neck where the thyroid tumor was on the right side. But, this isn't the case after all.
Medications for me are tricky because I have post-crainiotomy epilepsy. A lot of anti-inflammatories have had a negative interaction with Lamictal, one of my seizure medications. It caused the blood level to go up from therapeutic to toxic. I can either have the joint pain or feel drunk.
It is bad enough to take seizure medications, one of which is a valium derivitive....but I stay so fatigued to begin with. There have been a couple of times I slept a full 18 hours. The rest of the time I find myself with insomnia.
So, at this point, this is some of the issues I have been having. I have been stacking on weight without changing diet and then dropping it the same way...no real reason other than perhaps from the thyroid function being off. Since the tumors in the remaining thyroid has grown...perhaps it's time now to pull that puppy out. Most of the time though it has not been weight but more like I've been a marshmallow heated up just til it swells...it comes and goes.
I am also of late having sudden hot flashes and break out in a sweat. I don't know if it has to do with "the change." But, it seems like this would have happened about 4 years ago.
Another thing has been skin tags and hard bumps that come up on my skin, not lupus lesions. This may be due to the Sjogrens but I don't know. I was told that they are a sort of viral topical skin condition, which may be so...but, they are starting to take over.
Any more we can toss a coin and call me either Pebbles or Tumor Tessie. Actually the little moles and tags are not that bag...it just seems like it to my simply because they are there and I don't like them.
I think I am going to have my eyebrows tatooed to hide where they are falling out. My 13 year old son told me "don't waste your money mom, a Sharpie is a lot cheaper."
At 2am. I don't know what else I can say at this point other than right now I wish my shoulders belonged to someone else, my hips too....the numbness in my hands and other places from the poly-neuropathy is misplaced...at this moment it should be in my joints so I can be comfortable enough to sleep...and I'm tired enough that I should not have a bit of trouble.
I have a basket full of pills...and I thought my GRANDMOTHER had too many pills. I should be 30 years older than I am now to start racking up a meal of them.