Hi, my name is Theresa and I'm new to this forum. I'm sorry if this is long but I want to intro myself properly and get everything written down.
I've been reading a bunch, pages and pages of posts and I see that frustration is a pretty common problem.
about 18 months ago I started having horrible pain in all the joints of my hands, feet, my knees, elbows and even my shoulders. My back hurt especially when I would wake up in the morning and so I went and saw my primary care Dr. who ran blood work and called me as soon as it came back. I had a positive ANA, my sed rate was elevated and he said he was sure I was dealing with Lupus. He sent me to a rheumy who I liked a lot. He was a little ole guy with a ton of experience. He decided he wanted to treat it with just some strong anti inflam's for the time being and not put a label on it. They didn't help much and sadly my rheumy passed away after I had made only two visits to him.
It really threw me losing a Dr. I trusted and so I didn't want to look for another one and just managed with Ibuprofen and Tylenol. My symptoms however have gotten worse and by April I was having additional problems. I also started a course of allergy drops from my ENT around that time and after 5 weeks I had to stop because they made my symptoms worse.
I found a new rheumy by myself but had to wait 5 weeks for an appointment. By the time I saw him I was feeling bad but the pain had lessened a little. The appointment didn't go well, he barely listened to me and my husband and spent 80% of the appointment talking about sleep apnea even though we kept telling him I had no problems sleeping and I don't snore, I didn't tell him half of the problems I was having because he wasn't listening anyway and he took a bunch of blood and a urine sample and told us to come back in 4 weeks.
Forward 4 weeks - my lab work came back. Positive ANA, sed rate was high normal, my titer was 1:160 and speckled.
I also had a positive HLA-B27 as well. My CRP was elevated to 1.1
My lupus panel results were all 'normal' but on the top end of normal.
He totally dismissed me, said I have fibro, gave me Gabapentin and said come back for a follow up in 8 weeks.
I wasn't happy so I went back to my primary care doc, he's been my doctor for over 10 years and sees the changes in me. I took him everything and he said with the symptoms and lab work he is more sure than ever that it's Lupus, he's got a lot of experience and I trust him. Plus he is the only one listening to me. He was concerned about the pain I was in and gave me a high dose course of Pred which he said wouldn't help if it were fibro. It helped a lot lowering my pain a fair bit.
He sent in an urgent referral to another rheumy and they got me in this week.
She spent over an hour with me and my husband and listened and noted everything I said. However, then she said she wasn't ready to put a diagnosis on me on paper or give me any additional medication because the Pred my primary gave me had reduced my symptoms and she wasn't seeing me at the worst. She said she wasn't saying it was or wasn't one thing or the other she needed to see me more to make a decision because "the meds can be worse than the disease and I'm not willing to put you on them if you don't need them". Whilst I appreciate her being careful I'm in pain and having all kinds of problems. I sat through another exam and question and answer session and got nowhere. Everything I told her was going on she had another answer for and even went as far as to say "well you're 44 you're going to start getting aches and pains and feeling stiff", my husband responded to that with "she wasn't this bad before and over the last year I've watched her go from no problems at all to barely being able to get up and move some mornings" I asked if it was going to be damaging to me to wait and she said "it won't get worse that quickly you'll be fine" . She said if I flared to call her and not my primary and she would see me within 24 hours and go from there, that If things stayed where they were now she wanted me to book and come in again in 4 weeks anyway. I literally sat in the car after and cried.
I don't know what to do right now, I'm so very frustrated, I'm in constant pain and I'm worried. I feel like nobody but my primary care doctor gives a dang and from what I've been reading this isn't uncommon. So far this is what I'm dealing with -
Positive ANA (twice, 18 months apart)
Titer of 1:160 (I don't know what my first one was but I could find out)
Pain in pretty much every joint - sometimes so bad I catch my breath
Stiffness in my joints
Muscle tenderness all over - cramps in my legs and feet when cold
Cold feet and hands on a regular basis
Back pain from the middle of my back down to where it wakes me at night
Photo sensitivity - if I am out in the sun or heat for more than a couple of minutes my face especially on my cheeks get red. I also have to wear sunglasses outside year round or it hurts my eyes (I live in Texas so no fun there). Newest rheumy told me that redness in my face when in the sun isn't a rash and therefore isn't lupus related.
Migraine headaches - she also said these weren't related.
Extreme fatigue, not tired sleepiness, this is something I've never felt before. It's like my whole body just gets heavy and exhausted and I have to sit/lie down or I get breathless. I also feel like I hit a wall around 3pm at work and my brain starts to fog and I can't concentrate.
Cold sweats that make me feel like I am unwell.
I heal slowly, bruises and minor cuts etc take much longer to go away than before.
Occasional mouth ulcers that are very painful
Chest pain that my primary diagnosed as inflammation and gave me steroids to clear up
I yoyo on my weight by 50 lb's either way despite not changing my eating habits
Hysterectomy 3 years ago - problems I was having were caused by endometriosis I didn't know I had
I've had 3 kidney stones over 12 years and multiple UTI's
My son had a clotting disorder (protein S deficiency) and my oldest daughter has PA, EN and psoriasis. Both my girls have thyroid issues and take medication for it.
Sorry this was so long and thank you if you stuck with it throughout. I'm sure I've missed something so please let me know if you have any additional questions. I really just don't know what to do next. I'm feeling so defeated.