I am newly "officially" diagnosed (dec. 24), but have been experiencing symptoms for five years, starting with two unexplained and severe seizures. However, I have had possible symptoms back into my teens and earlier...so who knows. I was diagnosed with Celiac at age 15 after having four years of awful, awful symptoms. I believe I would have died had I not gotten diagnosed. The maternal side of my family has strong autoimmune disease, including my cousin who was diagnosed with lupus at age 24 (I am 26 now), and who also has sjogrens and RA, my aunt who has hashimotos, and my mother who has sjogrens, RA, hashimotos and many symptoms of lupus, but who also has a severe mental illness and refuses treatment, and was never willing to get tested for lupus.
For the past three years I have struggled with searching for a diagnosis. I saw many rheumatologists armed with lists of my symptoms and test results (I had a positive ANA and some mild abnormalities on my CBC). The doctors would only go so far as to say that I could be "developing lupus" but wouldn't diagnose. (You all know the drill :)) I finally allowed myself to be diagnosed with Lyme by a well-meaning doctor, and treated with IV antibiotics. I was also on prednisone and plaque at the time, due to orbital myositis, fatigue, and hair loss. I improved somewhat during this time, and was able to go back to work (I am a teacher). However, I have been on a downward spiral again for the last year and a half.... fast forward to current time.
I have been seeing a wonderful and kind naturopath for the past 8 months. She has been trying to help me with my varying and worsening symptoms and has been a huge help. Despite this, my energy was worsening, I had been fighting a battle with the mental fatigue of [diagnosed] epstein barr for the past year, my stomach problems were worsening again, I was having increasing anxiety, depression, and agitation, symptoms of small fiber peripheral neuropathy and sjogrens, among other things. I had discontinued prednisone 5 months before, and plaquenil 3 weeks before the day my current symptoms started (I know...NOT a coincidence, which I see now!)
On Friday evening (this past Friday), after I got done with work, I looking forward to resting on my 2 week break from work: I teach 4 and 5 year olds who have experienced child abuse and neglect. I also was on a break from grad school (I am pursuing my master's in early childhood education). Soon after I got home, I began to notice a nagging itching on my body... my feet, legs, hands, torso, in random places. There was no sign of a rash or any sign of particularly dry skin where I was itching. I noticed the itching worsened dramatically after I scratched, and it also had a somewhat pins-and-needles quality to it. Very uncomfortable. about an hour after that, I noticed I had severe pain in my wrist joints when I tried to move them, and then I had pain in my finger joints, and then my ankles and my knees.
I woke up on saturday morning and my fingers were swollen, as well as my knees, and a small amount around my ankles. The itching was worse too. That day was miserable.... of course, I was googling and reading about all the reasons for itching without a rash. I began to put these symptoms together with some other ones I had been experiencing....shortness of breath, especially in the mornings, and abnormal loss of appetite, and an aversion to eating meat. I also have been having some kidney/bladder problems, nothing too terrible, just trouble starting to urinate, sometimes I didn't get a "signal" that I had to go pee and just had to guess that I did, didn't pee that often etc. Of course I began to worry about kidney problems. Left a message for my doctor and emailed her with all my symptoms. She got back to me quickly and we made an appointment Monday morning.
Monday morning comes...we talk about all my symptoms, my doctor is concerned about autoimmune disease. She sends me for bloodwork, calls me early the next morning and says my ANA is positive as well as my double stranded DNA (she didn't do my SED rate). My iron is fine. The test she did gives suggestions about what could be going on, and my test pointed to lupus. Then she tells me (she is so great!) that she's already made me an appointment with a rheumy she knows at local hospital, and the rheumy is willing to see me that morning, and could we go? My husband and I go see this doctor, who is great, and listens to my history and all my symptoms, does an examination, and says, based on your bloodwork and your presenting symptoms as well as your history, I'm diagnosing you with lupus. What a surreal moment.... been waiting for an answer for so many years and suddenly, here it is. The rheumy put me back on pred immediately, as well as plaquenil. She sent me off for 11 vials of blood, a chest x-ray, and a urine test. Here it is, Thursday, the day after christmas, and I'm waiting for her to call with the results of those tests. Naturally, I'm worried and anxious and especially so because I'm still experiencing ITCHING!
The itching is:
-the worst on my hands, feet, and legs, and seems to be sometimes symmetrical (i.e. both inner thighs itch one right after another), and sometimes not
-pinprick/pins-and-needles in nature...sometimes I can ignore it and sometimes it is so sudden and urgent, like being stabbed with a pin on the inside, that I have to scratch, and that sets off a cycle of itching in other various places and it worsens the more I scratch.
-worsened somewhat after being in water, such as when I wash my hands or take a shower. It seems to "set it off"
-Benadryl (25 mgs, and 50 mgs)
-following instructions I read on this forum for itching, such as showering with lukewarm water, not drying all the way and applying a natural body cream, as well as tried oil.
-anti-itch creams including cortisone 10, "sensitive sarna," and a natural anti-itch cream with vitamin E, tea tree, and chamomile that has ALWAYS helped me with itching and skin issues in the past. NO HELP.
-bumping up my dose of pred 5 mgs, to 20 mgs daily. I have noticed in being on the pred that the itching is somewhat better during the morning and early afternoon, but as evening approaches, BOOM it's back with full force even if I arm myself with benadryl beforehand.
I am not experiencing dry skin any more than I usually am, and possibly less than I usually am.
There is no rash, no marks on my skin, nothing... the itch feels internal and scratching my skin does nothing but make it worse.
The itch began at the same time as the joint symptoms of this current and severe flare-up--joint pain and swelling.
I had changed nothing before and when the itch began- no change in meds except discontinuing plaquenil three weeks before, no change in what I was eating or doing, no change in soaps/detergents/ etc.
I am wondering if it is:
-itch from toxins having to due with kidney or liver or gallbladder (my liver enzymes were normal but still waiting on my kidney urinalysis)
-itch from nerve inflammation.... possibly related to my small fiber peripheral neuropathy?
My question is... what can I do?
I'm used to pursuing answers on my own rather than waiting for a doctor. I want to know the results of my tests and hope they come today or tomorrow, but for now it is helping me to feel proactive by pursuing possible solutions on my own. I've already called the doctor and left a message about this blasted itch still hanging around, but you know how doctors can be.... no return call yet.
If my kidneys are normal, could it be small fiber neuropathy? Would medications for things like RLS potentially help (mirapex, umm....)? Or perhaps starting a stronger medication like CellCept to suppress my immune system? Or even, assuming rheumy is on board, upping my dose of pred more for the time being? What if this doesn't go away?
For now, the only things that are helping a tiny bit are cold packs (but this is difficult as the itch jumps around so much) and tiger balm, the burny kind. Slathering it all over my feet and legs and then wearing socks and soft pants seem to increase the heat of the tiger balm and it distracts from the itch for about 45 minutes. Also, crying. My husband is such a dear.
Thank you so much for your willingness to give advice, and I'm glad to be a part of this forum... :)