View Full Version : New - And Not Sure What's Going On (Medically)

06-03-2009, 01:51 PM
Hi All,

I'll try to be brief but thorough. I could use some input and support. I DO have a rheumatologist appointment schedule in 2 weeks, but so far, my other doctors haven't come up with any answers.

I've had a variety of symptoms, to varying degrees, some for years. Recently, they've all become more acute and debilitating.

My father had Lupus SLE and Avascular Necrosis (he is now deceased). His mother, my paternal grandmother, had Discoid Lupus. Her mother (who I never knew), they THINK (in retrospect) had Lupus SLE. My mother has Diverticulitis. Her mother, maternal grandmother, was suspected to have Sjorgens and/or Scleroderma (she died before they could figure it out).

I'm allergic to NSAIDs and Ibuprofin. I get violently ill from Codeine. So I stick to Tylenol. I also have a history of getting sick from antibiotics, though I'm not officially allergic to anything except Ceclore.

My symptoms:

Heart Palpitations for years (confirmed MVP).
Leg numbness/tingling. Usually worst when sitting or laying down. It's been going on for years with no answers.
Joint pain, partiularly in hips. Elbow and wrist stiffness. Hands sometimes fall asleep at night for no reason (not laying on them). Some of the joint pain has become very bad at night and in morning.
Non-refreshing sleep - hard to wake up - though according to my family I sleep like a log (no alarm clock on the planet wakes me up). Though I've sleep deeply for years, it's only recently that it seems to take me hours to become fully alert.
Protein in Urine. First-morning pee shows none, but consistently, later in the day, urine shows protein. Doctor has no answer for it.
Occasional swollen glands and pain (in neck) without reason.
Occasional night-sweats.
Occassional Migraines.
All symptoms get much worse right before my period and during... to the point where my period is becoming debilitating (I just wanna stay in bed). Gynecologist says everything checks out (other than two small cysts on right ovary). I have a history of occasional cysts.
Overwhelming Fatigue.

Recently, a bought of kidney (?) back/stomach pain made me go to the ER. I have a high threshold for pain, but this was an 8 or 9 on a scale of 1-10. ER found nothing.

All blood tests, included ANA, have been negative.
Abdominal Catscan shows nothing.
Abdominal ultrasound and pelvic ultrasound show nothing.
Nerve Conductive Study showed nothing.
So far, only consistent result is protein in urine (other than first-of-the-day pee).

I'm extremely frustrated. I feel like my doctor and my boss think I'm crazy. No matter what time I go to bed and how long I sleep (nearly always straight through), I can't get moving in the morning. I'm in pain. I'm exhausted. I didn't feel awake today until 1pm (though I slept until 10).

I didn't know where else to turn, which is why I ended up here. I don't think I have Lupus, but with my strong family history of auto-immune problems, I certainly feel like I can't rule it out... or does the consistently negative ANA do that for me anyway?

Any thoughts or advice you all have would be greatly appreciated...

Angel Oliver
06-03-2009, 02:22 PM
Welcome to the forum and so sorry your are suffering all the many symptoms.As like you...i too am a bit of a mystery,but there are many the same here.Alls i can say to you is....''DONT GIVE UP,BUT KEEP FIGHTING''.One day...a doctor will work all this out,but unfortunetley it does take time.
Do they know about your family history? If not make them no...or if yes...keep reminding them.I know its so hard when you feel like crap and you feel noone believes you....cause im right there too.But im gonna keep fighting and hope that one day...a doctor hears me for sure.We will all try and help you through this.Glad you found us!!

06-03-2009, 03:11 PM
Thanks Angel...

My primary doctor knows of my dad - I remind him constantly (LOL).

The rheumatologist I'm going to is the same practice that my dad and grandmother (maternal) used to go to. I believe she was being treated by them for arthritis. She was out-of-state by the time she came down with severe diarrhea, which is what killed her (and they suspected sjorgens and/or scleroderma, but I'm not exactly sure). I don't think the same rheumatologist was at all involved by that point. They did treat my dad for many years before he died though, so I figured it was a good place for me to go. He was a non-compliant patient (didn't take his meds the last few years of his life) and an alcoholic (which is what killed him, liver cirrhosis), so I certainly can't blame the docs for that.

Angel Oliver
06-03-2009, 03:14 PM
Oh im so sad for your losses...you could do with good help from them and now.Hopefully it wont be far away.xxxxxxxxxx

06-03-2009, 05:39 PM
So glad you found our forum. Sometimes it takes years and many different doctors to find the right one for you. There are members here who have never had a positive ANA, yet have positively been diagnosed with lupus.

Don't ever give up searching for answers and don't let any doctor shame you into silence. You know your body better than anyone. Be honest with yourself. Are you a complainer, or are you really ill? You know the answer to that, of course. No one in their right mind looks for a way to get a lupus diagnosis, or to feel this rotten 24/7. Doctors who don't realize just how ridiculous that position is often tell us we are hypochondriacs. I doubt anyone here is looking for a way to be denied health care and life insurance, which can and does happen to people who are diagnosed. So, the next time some doc treats you with anything other than respect, fire him or her and move on down the road. Find another one and keep on pushing. It's your life, your health, your well-being. Don't let lupus (or whatever is going on with you) keep you from taking charge from this point forward. You're the boss here. The docs work for you. Sometimes they need to be reminded of that fact.

Best to you and welcome -


Betty Boop
06-03-2009, 06:30 PM
I can really relate. I am having severe neck pain with swelling, been present over two weeks and am miserable. Doctor says to wait one month and see if it improves. ANA borderline, CRP is elevated. I just wanted to share that I saw on the Doctors Show (not sure of name), that people who suffer from lupus are also likely to suffer from thyroid disease and vice versa. Also, anyone who suffers from any rheumatoid arthritis family of diseases including lupus, Sjogren's, fibromyalgia, etc., are also prone to have thyroid disease and vice versa. I hope you will get some answers soon. For me, getting a straight answer and deciding exactly what is going on would be a big relief. Take care.

06-03-2009, 07:23 PM
hi wolfrabbit,

welcome to our group. you have come to a great place for getting help while struggling through this very difficult diagnostic period.

you have done an excellent job of documenting your symptoms. I recommend that you browse around the different threads where different symptoms are discussed. If you realize that you have every had any of these symptoms, add them to your list and try to estimate when. Lupus symptoms come and go, and move from one spot to another....symptoms are not always present.

i think you made an excellent joice in rheumies....at least your family history will already be known, and should certainly help in the diagnostic process.

so glad you found us, keep up the good work....we will help you educate yourself, which will make it easier for you to make decisions about testing and treatment.

06-04-2009, 04:34 AM
Hi. Sorry to hear you are having such a crap time! Very frustrating to not have any answers. I agree with what others have said here that if your doctor/ rheumatologist/ phsyio etc are not shaping up... ditch them and get one that works for you. It's your life. Most importantly they should WANT to be able to help you. if they don't want to - they won't and it sounds like you could do with someone working for you. All the best!!

06-04-2009, 08:22 AM
Thanks for the welcome and encouraging words everyone.

I just woke up a little while ago (about 10:30) and feel like I've been hit by a bus. Tired and achy. I'm so frustrated with feeling like this in the morning.

When I've been sitting or laying down a long time I get painfully stiff, especially my hips and ankles. We went to Philadelphia over Memorial Day Weekend and I felt like the old lady in the group... after 1/2 a day of walking I was in a LOT of pain (hips but also feet and ankles). My feet hurt so bad that I wanted to just lay down. Luckily, everyone I was with was very understanding and let me take a lot of breaks to sit and rest, but I shouldn't be THIS "out of shape" at 39 years old!

I grew up with my Dad having Lupus. I certainly know how debilitating it can be. When I look at the list of symptoms though, as related to me, I'm just not sure...

Muscle and joint pain: Yes. But I don't have swelling or redness in any joint. I do get a lot of cracking, crunching and popping, especially in wrists and shoulders. My flexibility in my joints has decreased quite a bit in the last year.

Fever of more than 100 degrees F: I don't think so. I don't have a reliable thermometer, but when I do take my temp is never elevated. If anything, it runs a little low.

Prolonged or extreme fatigue: Yes!

Skin rashes: Maybe. I get itchy. When I was a teenager I had a rash so bad on my arms and elbows that I would wear long-sleeve shirts in summer. It might have been psoriasis, but the doctors my mother took me to were never quite sure. Cortisone cream helped, but I ended up using body lotion with vitamin E and that cleared it up. Since then I have ALWAYS used a lot of lotion every single day and haven't had an outbreak since.

Anemia: Doesn't seem so. Bloodwork always seems to be okay.

Kidney involvement - may include weight gain, swollen ankles, high blood pressure and decreased kidney function: This is an odd one. Catscan and bloodwork seems to be fine, but I have had a lot of weight gain in the last two years (size 8 to size 12) and I've struggled to take it off (but that doesn't make me different than a lot of women I supposed!)... I don't have swollen ankles, but painful ones... my blood pressure used to always run very low (around 90/65), but in the last year or so has been more like 120/70... and I consistently seem to have protein in my urine and occasional kidney (?) pain... pulsating dull ache in my back right at the bottom of my ribs.

Pain in the chest upon breathing deeply / pleurisy: No.

Butterfly-shaped rash across the cheeks and nose: No. But my face/cheeks get itchy.

Sun or light sensitivity / photosensitivity: Don't think so.

Hair loss resulting in patchy or bald areas: No.

Abnormal blood clotting problems: Don't think so.

Eye disease: may include dry eyes, eye inflammation and rash on eyelids: Not really, though I sometimes have dry eyes, itchy eyes, the occasional sty, and floaters.

Seizures: No

Mouth or nose ulcers: Mouth no (used to get them a lot as a kid), nose very occasionally.

Then, of course, the symptoms I do have that aren't listed above... leg numbness, heart palpitations, headaches and migraines (occasional), dizziness (not always, but seem overly susceptible to it), night sweats.

I wonder... do those of you who have Lupus find your symptoms get worse around the time of your period? When I tell my doctor this he thinks I'm crazy. I'm in a lot more pain around my menstrual cycles. Funny thing is, my actual period itself has gotten much lighter in the last few years. I swear though, I can clock my cycles according to my symptoms... having a couple of bad nights of heart palpitations and I KNOW my period is coming, and low-and-behold, there it is two days later. I inevitably get a bad headache or migraine on the last day of my cycle. During, my hips are so sore I just feel like not moving, and even sitting hurts. Gyno says everything checks out.

06-04-2009, 12:22 PM
Welcome to the site and sorry you have gone throught so much but you came to the right place for venting, laughs, understanding, and comfort. You will not be judged here and will find tremendous support and love.

Welcome again!