I will probably post a more complex post with more history somewhere else eventually. I have had a confusing 6 months of severe symptoms. I just want to ask a question.
I have a consistent ANA of 1:640 or 1:320 Nucleolar pattern over the past 4 years. I once had a very low C3. I had one "flare" 4 years ago that lasted about 3 months and I was relatively fine until February this year. I currently have swollen and painful hands/ joints, peripheral edema in my ankles, night sweats, malar rash etc.
I have also had repeated UTI's / pyelonephritis since March of this year (ones they have had cultured: Strep group B and Enterrococcus Fecalis). Also in April I had severe right upper abdo/flank pain and they said at one point it was a bowel obstruction, which they gave me IV fluids and drugs for, but that pain seemed to get a lot better with antibiotics once they found the Strep B, but the unwell feelings (fevers, etc.) did not get much better. It was after this that the joint pains, etc got really bad and I got the peripheral edema and chest pain started
Anyways I did get a diagnosis of incomplete lupus/UCTD but I am not sure that is what is going on to be honest. I feel very sick and I do not have a followup until the middle of October to review more autoimmune bloodwork. I do have fibrosis in my lung apices found on both Xray and a CT. I have been on plaquenil for about 2 months.
I started getting awful urinary urgency and frequency, low back and pelvic pain and worse night sweats and flushing and nausea. I have had probably like 8 STD tests in the past year because of my recurrent urinary symptoms and infections, all have been negative and I have never had an STD in my life (I am 24 and have been with the same partner for 5 years and always use protection).
Anyways they gave me an ultrasound and found a hydrosalpinx (blocked fallopian tube filled with fluid). My periods since March when I had the Strep B UTI have all been 2 weeks late, it is a bit weird. Anyways they didn't know what to do because I have never tested positive for STD's. I pretty much demanded PID treatment because I feel like the risks of untreated PID are more than the risks of antibiotics.
Is it possible that my UCTD could cause some sort of fibrosis of my fallopian tube that caused the hydrosalpinx? I feel so confused, I have no idea what is going on inside my body. Maybe I have PID caused by some weird bacteria like the Strep B or enterrococcus that is not sexually transmitted? These antibiotics feel like they are killing me on top of all my other previous symptoms. My doctors don't seem to listen to me anymore and I feel like I am going to die and at my autopsy they will finally realize what is going on. I just want to get finished the antibiotics so I know what is my maybe connective tissue disease, what may have been an infection and what is caused by side effects.
I am kind-of worried that perhaps I have endocarditis causing my arthritis, chest pain, edema and night sweats, etc. I am also hoping that the UCTD is actually reactive arthritis, and I can maybe put it into remission eventually, this is all wearing me down, I am so sick of being sick! However I know that usually people with reactive arthritis do not usually have a positive ANA, etc. so I guess that seems unlikely.
Also I ALWAYS have a low ESR ( I am talking consistently either a 1 or a 2) and low CRP and that is not helping my doctors believe me or decide to treat me. I am lucky that my white blood count & neutrophils seem to raise when I have an infection or if I am feeling worse with an infection. Some doctors seem to rely more on what they see - which works as you can see my swollen hands and ankles as rheumatologists seem to see this, but my GP really relies on the blood tests and discounts all of my other symptoms if the blood tests do not support it. Now that my blood tests don't fully support some things - she seems to be refusing to order any different tests to figure out what else might be going on.
The following user gives a hug of support to zip452: 76trombones (09-07-2012)
The real joy of any AI (Autoimmune condition) is that it's always providing new symptoms and new surprises. This is also the frustration. I was diagnosed with UCTD 5 years ago. The first year was the worst -- 3 hospitalizations and a whirl of ever-changing prescriptions. My lowest point, psychologically, was when I found myself drinking coffee in my car in the parking lot of a hamburger fast food place and crying uncontrollably.
I tell you this only because this frustration, myriad of painful and frightening symptoms and helplessness seem to go along with AI. With the help of a wonderful rheumatologist, cardiologist, pulmonologist and pain specialist, I'm now on the right balance of meds/dosages to allow regular water exercises (best in a warm water pool) and a nearly normal life. I also discovered, at the end of that first year, that a skilled acupuncturist is a great help in providing relaxing sessions to give breaks from the stresses of AI symptoms. Frequent rests and limiting activities to avoid depleting energy also are important to improving physical and psychological symptoms.
Improvement has been much much more gradual than I wanted it to be, but it has happened.
Rely on the doctors who DO know your condition and try to be patient with your body which, with meds and care will adjust to a more normal state. When you have the energy, you may want to keep an eye out for a different primary care physician who knows more about AI conditions.
The Following User Says Thank You to Cautious1 For This Useful Post: zip452 (09-10-2012)
Cautious1 thankyou for your post. Sometimes it feels like I am the only one going through something so confusing and uncomfortable. I am sorry that the first year was so difficult for you. I definitely want to get back to a near normal life if possible, I am glad to hear that you have improved past the difficult first year. I am hoping that there is hope for me! I think it could be a lot worse - I am just uncomfortable because I feel like I have no followup and I don't have secure answers for most of my symptoms. I think that I am realizing that I do need to rest and admit my limitations and hopefully I can rely on my body, it is still hard psychologically to deal with doing less than I am used to and my family hasn't been helping things. I think that if the medications worked and if I can get my regular sleeping and/or menstrual cycle back I will feel a bunch better. I think that I have to be more comfortable telling the doctors how I really feel, instead of caring what they think about me and wanting to make them happy. I think that I may try to find a different GP. My old GP had an AI herself and she was amazing. My counsellor also has an AI and has suggested that I find a different GP - but it is difficult in Canada to find one, especially when one is a more "complex" patient.
It's not just in Canada that complex patients find things difficult. My best advice is to be patient, because answers are not always immediate or clear in AI diseases. Always write your top 1-5 questions down that you need answers to, or at least an understanding of. AI diseases can wax and wane and sometimes you can do more, sometimes less. Yes, a proper night's sleep is very important and I too think that getting your cycle back on track will ultimately make a difference in how you feel. It was important for me. I might make another suggestion, in addition to writing down your 1-5 questions, is to make sure that your team of Dr's have a game plan to treat your symptoms. The name of the AI is not so important as proper treatment, or at least a plan. I think, as a patient, it helps to know that there is a plan of action and that we are being taken care of, even if, as in the case of my AI disease, there isn't a documented protocol of medications that are always effective or indeed a treatment plan at all. I would also suggest that you might at some point, bring a significant other with you to an appointment, be it your partner or a family member, so that they understand what you are going through. And especially don't give in to searching the internet too much. There is an awful lot of worst case scenarios, and misinformation out there. I think building a good medical team that you feel comfortable with and have faith in is of the utmost importance, even if they don't have all the answers you would like them to have. You are not alone. We are all in this together.
The Following User Says Thank You to luca689 For This Useful Post: zip452 (09-12-2012)