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Naturegirl
06-10-2012, 06:50 PM
Hello,

I'm still trying to figure out what my unexplained health issues are all about... Someone suggested lupus, so I thought that I would ask the experts... Sorry that this is so long and thank you in advance for your help.

Most of my symptoms come and go and are sometimes much worse than other times.

Periodically, I get the following symptoms, all at the same time, in what I consider to be 'episodes'. The onset is sudden:

Swollen abdomen
Nausea
Swollen glands (in neck - near tonsils)
Swollen lymph nodes (groin, armpits, neck, knees...) - I think these are my lymph nodes (but could also be some other kind of gland???)
Aching joints (hips, knees, elbows, small joints in fingers, toes...)
Headache (tight band around top of head)
Lack of appetite
Extreme fatigue
Brain fog
Sense of despair/ cry easily - that feels more physical than just a response to other symptoms
Painful urination (as though urine itself is irritating)
Sore throat
Slightly hoarse voice
Itchy acne like rash on forehead - like lots of tiny pimples beneath the skin (nowhere else - usually appears after other symptoms have subsided)
Weakness
Muscle aches
Dry/gritty eyes
Photosensitivity (hurts my eyes to drive at night, look at a computer screen...)
Hypersensitive to smells
General malaise / feel like I'm getting the flu
Chills and feel hot at same time (prefer to be warm though)
Only option seems to be to 'sleep it off'

I first got this collection of symptoms and it lasted around 3 days in June 2009 (just after having the Mirena IUD inserted - not sure if related, might just be a weird coincidence). When I do not have them, I feel mostly like a healthy 33 year-old... but unfortunately they come frequently, sometimes weekly, sometimes bi-weekly, and are getting in the way of all aspects of my life (work, relationship, travel...).

The other symptoms/issues that I have are more ongoing and I've had these issues since childhood, although they've got worse in the last couple of years. Frequently getting very painful UTI's (this has vastly improved since I recently started doing bladder instillations - life-changing!) and gynecological issues (pain, inflammation, irritation, fissures...). I've had these issues since being around age 8.

Just these last couple of weeks, I've had a couple of newer symptoms add themselves to the list: Very bad night-time nausea and stomach cramps, to the point of waking me up as well as just feeling lousy in the morning. I also feel this strange 'buzzing' in my head (not a sound - more a sensation) when I wake in the night, and feel as though I might faint when I stand. I feel a bit feverish too... My throat pain has been more intense and lasted longer. I have a feeling like there's a lump in my throat (thyroid area?). The aching joints have also been worse these past couple of weeks (this usually is less severe and doesn't last as long) - and I felt as though my left hip (never been painful before) and right shoulder were kind of 'frozen' yesterday morning. I felt as though my arm and leg had pins and needles too and were tingly/numb. This stopped after about an hour of moving around gently. Had to sleep most of yesterday.

It is just difficult as I feel that the issues keep 'moving around' my body and new ones are appearing all the time.

I've been gluten-free (and dairy light) for around 3 years, which helped me with some ongoing GI issues.

Does any of this seem as though it could be lupus connected? What is the best way to get diagnosed, if so?

Thank you very much for your time.

Josie

Derrie
06-10-2012, 07:11 PM
Hey, Josie,

First, I want to say that I am sorry you're experiencing all these symptoms. It's really hard to feel sick so often! It can take a lot out of you, I know.

Second, while most of us here have lupus or some other autoimmune disease -- and thus are experts in our own experiences -- we're not experts in diagnosis, and we can't tell you whether or not you have lupus.

But it definitely sounds like you have something going on, and it's been going on long enough that I think you should make an appointment with your primary care physician (PCP). Your PCP can give you a thorough physical exam to check lymph nodes, see any rash you have, check your vitals, etc. Also, she will take a detailed history, which will help her figure out the course your malady has taken. Then, she will likely order blood work, which I bet in your case would include an ANA (a test for antibodies in the blood that are associated with autoimmune diseases like lupus) and a TSH/T3/T4 (a test for thyroid antibodies), among other tests. She'll likely also take a urine sample. She may also do an imaging study, like a x-ray, if she's concerned about your joints. These first-line tests will help your PCP determine whether she can make a diagnosis or if you need to see a specialist like a rheumatologist (deals with joints and autoimmune issues) or an endocrinologist (deals with glands and hormones, like your thyroid).

I cannot emphasize strongly enough that you need to make an appointment with your PCP. This is the only way you can figure out what is wrong with you and hopefully figure out what to do to make you feel better. You may also want to see a gynecologist for your gynecological issues.

I'm glad you found us, and I'm sorry you're feeling so bad. I encourage you to look through old posts here because you may find old posts where people discuss symptoms similar to yours.

tgal
06-10-2012, 07:23 PM
Hi and welcome to WHL. I too want to tell you how sorry I am that you have been ill so long. As was said above, there is no way we can tell if you have Lupus, or one of the other 62 AI diseases but it certainly sounds like you have something that needs to be looked at! One of the things we have learned from being ill is that we must be our own advocate. The doctors see you as a number not as a person most of the time. You MUST keep pushing until you get an answer. You know your body better than anyone and you know when something is wrong. Don't let anyone dismiss you or make you feel crazy! It is OK to keep pushing until you find out what is wrong with you. It is OK to fire your doctor and hire another one if he/she isn't helping you.

Until then, we will be here for you and hopefully we can help you on your journey to finding the answers you need

Naturegirl
06-10-2012, 08:16 PM
Hello Derrie,

Thank you very much for your kind words and understanding...

Yes, I realize that no-one can diagnose on here... just more looking to see if anyone has had similar experiences so that I can 'direct' doctor visits more... Sometimes it seems as though those who are experiencing these various symptoms and have found some answers have become more 'expert' than the doctors themselves!

Yes, I've been to multiple doctors over the years - both in Europe (where I'm originally from) and here in the USA, but unfortunately am still left with no clear answers or solutions. I've had a colonoscopy (that showed more than 30 non-cancerous polyps - in case that can be related). Also had some ultrasounds done (including of uterus) which showed fibroids - these seem to currently be relatively stable, luckily.

I've had quite a bit of bloodwork done in Europe. My thyroid came up as normal as did the 'rheumatic' test. I am currently waiting for some results from recent bloodwork that included a test related to lupus (not sure if it was an ANA though). The main 'abnormality' was that I had low levels of cortisol (and received treatment but had no improvement in symptoms) that the doctors said may be connected to adrenal insufficiency. I have also had many tests done on my urine as I've had so many UTI's (but recently that has VASTLY improved, after doing bladder instilliations... thankfully!!!). I have also recently done a 'female hormone panel' and am awaiting results from that too. I've been to many gynecologists and nothing 'abnormal' has ever come up, although they always say that it looks red and irritated. Trying to use a new approach using lactobacillus that seems to be helping a little.

I've never had an X-ray done of my joints so that is something that I will ask for... I may also look into talking directly to a rheumatologist (my grandmother had rheumatism from age 8, and menieres from ~40). I will also find out about seeing an endocrinologist if there are any abnormalities from the recent hormone test. Thank you very much for the advice.

Good idea to look through old posts... had a little look already...

Naturegirl
06-10-2012, 08:18 PM
Thank you very much, Mari. It is much appreciated. Good advice! So would you say that there is little overlap in symptoms with AI diseases and lupus, to the point that looking for people with similar experience is of little help in trying to initiate diagnosis? Do any of these symptoms sound familiar to you? Thanks again.

tgal
06-10-2012, 09:27 PM
Thank you very much, Mari. It is much appreciated. Good advice! So would you say that there is little overlap in symptoms with AI diseases and lupus, to the point that looking for people with similar experience is of little help in trying to initiate diagnosis? Do any of these symptoms sound familiar to you? Thanks again.

The problem with Lupus, and all AI diseases, is that the symptoms themselves can be caused by so many other things. There is no test for Lupus. Basically what has to happen is that all the other possible things that could cause the symptoms have to be ruled out. So yes, I have many of your symptoms and some I have never had. That means nothing though. Those symptoms could be caused by tons of things and each persons Lupus is different.

Also, many of us have overlapping diseases so once they figure out you have an AI disease it is very possible you may get diagnosed with 3 or 4. That in and of itself is a reason that there is such a wide variation in symptoms. We are not trying to be vague it is that this is a tricky disease. You definitely need to keep pushing and, if nothing else, we have tons of experience with doctors so we have lots of tips!