New and Unsure about me

[Tereslove]

Hi I am new here and was wondering about symptoms of Lupus. My doctor is sending me to a rheumatologist to see what he says about my latest blood work. I had a positive ANA but the double strand was negative. My red blood cells are low, I am anemic for no reason, b12, and iron are fine, and the folic acid was actually high. It also showed high for inflammation, so I am at a loss as to what to think. He has told me that I have fibro and now the positive ANA has him questioning why...any ideas or help? I just don't know what to think, but I feel my body getting worse every day.

[milkwoman]

Welcome! Your doc sending you to a rheumatologist is a good thing. They will run much more detailed blood tests. I am hypothyroid and have SLE (lupus) and Sjogren's. You say you are anemic but then say iron is fine? Do you mean you have low ferritin?

I hope the Rheumy runs the ds-DNA test again. At one lab I test negative for ds-DNA but at two others I am a strong positive so the tests aren't perfect. I also test positive for Anti-RO(SSA) which is indicative of Sjogrens. I have low ferritin, low-normal D, low-normal iron, and high B12.

I've been on meds for 6 months now and managing symptoms well. Prior to diagnosis, I felt awful for 2 1/2 years. My joints ached, I was beyond tired all the time, I was short of breath during workouts, I was losing endurance, I had "heavy legs", heart palps, poor body temp regulation, fevers that would come and go, foggy brain, chest pains, dry eyes, loss of eyelashes and eyebrows, and I seemed to get sick ALL the time with colds.

I am fairly fit and maintain a high level of exercise and resistance training and I could feel myself unable to workout as time went on. I saw every specialist in the book and all told me I was fine. I finally had an ANA test done and it came back positive and even then I was told "you're fine". By that point I'd had enough so I insisted the positive ANA result be further examined and I was sent to a rheumatologist. He looked at me and said, "there is NO way you have lupus" (I simply "looked" too healthy) but he ran all the bloodwork. 10 days later he ate his words and started me on medication. A second Rheumy determined that in addition to SLE I also have Sjogren's.

I have good days and bad days and symptoms flare and subside. I require loads of sleep and cannot overdue. I'm getting my endurance and strength back (working out keeps me sane and helps my joints to stay fluid). I have to limit sun exposure as well as watch alcohol and sugar intake. I'm learning as I go. Currently, raising my ferritin and iron levels is a priority.

When you have your Rheumy appt, show up with a list of all your symptoms. I actually keep a daily log of how the day went so I can track my symptoms as well as progress. Turns out, there is a family history of AI disorders that websll really didn't know about. Would have made my getting diagnosed a whole lot easier.

Good luck and hugs.

[lupus-support1 Administrator in reply to milkwoman]

Blood tests can and do change and therefore the doctor needs to treat each patient according to their clinical symptoms. Quite often, even in a flare, the blood test can be "normal" or "unremarkable". It is also true that there are patients who are "sero-negative" and this will cause a non-lupus specialist to maintain that the patient does not have lupus!

Be well!

Ros

[Atibrat Moderator LUPUS SUPPORT]

I agree good thing you are going to a Rheumatologist. There is a good chance you have lupus but the Rheumatologist will be able to tell you. It took years of symptoms for my diagnosis and I still have new symptoms pop up. I actually have connective tissue disease and over the past 4 years my blood work is all over the place. Every 3 months I get blood work and somethings are out of whack the next time they are normal and something else is messed up. The whole thing started with extreme fatigue and weaknesses that it was hard to get out of bed. A year later joint and muscle pain for me the muscle pain is much worse than joint pain. Then crazy rashes including the butterfly rash but that took a long time to show up. I also now have chronic inflammation in my lungs. When a flare starts I know because my scalp starts itching and I get hair loss, my eye ache from dryness and the butterfly rash flares at night. Many other things come and go but medication and getting enough sleep with reducing stress helps a lot. Let us know what your Rheumatologist says and don't be surprised if it takes awhile for things to show up. Often this is a slow disease to show it self completely.

[milkwoman in reply to Atibrat]

Atibrat, good info! I don't have the butterfly rash and have wondered of it will come at some point. Yes, things progress slowly and I do get some strange new symptoms (currently dealing with tendinitis they I initially ignored as being anything serious but after 4 months of pain that was progressively getting worse I finally saw a sports med doc who is treating me for it).

6 months into knowledge and treatment I'm only just beginning to understand more and not freak out as much. This board and its members help tremendously. I do get worried of "what will happen next" since no one can predict this crazy disease, but try every day to take things as they come and stay as heathy as I can. For me, thst means listening to my body and doing what I think is best for it along with my docs say (I stay as informed as I can and question/push them constantly). Some days good, some bad. My hubby is very supportive (which is fantastic) but my immediate family doesn't really understand the severity (my parents NEVER check in and ask how I am), I've learned to surround myself with caring individuals and keep negativity away. I haven't spoken to my parents in months.

Besides my Rheumy, I have a wonderful endo who, despite my "numbers", actuly listened to my symptoms and started treating my hypothyroidism (this was prior to being diagnosed with SLE/Sjogrens). He saved me and gave me the strength to continue pursuing my other health issues. I consider myself one of the lucky ones as so many simply cannot get the help they need since blood tests show they are "normal".

[lupus-support1 Administrator in reply to Atibrat]

Most lupus specialist adopt a "wait and see", that is, study the patient and note any new symptom which develops over time. This does not mean there is no treatment, but rather a delay in diagnosis. The worst that can happen is to be told one thing and then another diagnosis as this may lead to the patient not having confidence in the doctor. It is not unusual to hear women say they waited 20 years for a diagnosis, mostly because they did not see a lupus specialist.

It is important to know your own body - just like you can recognise when you are having a flare.

Be well!

Ros

[Harlow]

Hi, Tereslove, sorry to read about your troubles. I was diagnosed with fibro for quite some time, until a visit to the rheumatologist revealed I had mixed connective tissue disease. Two months later, I was diagnosed with CLL (a form of leukemia), which the oncologist said often accompanies autoimmune diseases. The CLL was discovered only by chance, because of the "smudge cells" in my blood work. Probably your anemia is not caused by CLL, but my experience may help give you some feel for how difficult it can be to figure out just exactly what in the world is going on when our bodies start acting up?

[lupus-support1 Administrator in reply to Harlow]

You have had a great deal to deal with and your experience allows you to listen to your body and know when something is wrong. For anyone living with an unpredictable, painful disease, knowing your body, resting when necessary is important.

Be well!

Ros

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I can understand that this is a worrying time for you as there is so much uncertainty and perhaps you are also worried about having a diagnosis of lupus. Unfortunately, there are many websites which misinform and scare people. The good news is that over the past 20-30 years, there has been a great deal of research and treatment. Many people even come off all medication. The vast majority lead a "normal" life, get married, have children. The most important point is that you see a lupus specialist as not all rheumatologists have even treated lupus. It is also important for you to ask questions that you need to know about. I always recommend you write down all your questions as it is easy to walk out and realise you did not ask about something important. I also suggest you write down from childhood, every illness with dates up to the present - no matter how irrelevant you think it may be. Include any mood changes such as anxiety or depression as this can also be helpful to the lupus specialist.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

[Tereslove]

thanks for all the helpful info, I just hope that I can get some answers, all I know is I hate feeling like this all the time, some days ok and then the bad days, and here lately its been more bad than ok or good, I know that the weather plays a big part of how I feel also. Living in NY the weather has been horrible and I have had days that I have barely got out of bed and if I do its only to the couch. I miss the old me, I was a 120 pound dynamo and couldn't be stopped, now I am 180 and can't get started. I get really depressed at times, ok most of the time but I try not to show it...I am great at hiding my feelings and put that smile on for the world. Anyway, thanks again, I will keep in mind the responses. God Bless

[loopylewis in reply to Tereslove]

Everything you said is how I feel too. I never took time of sick and was always running around. Now in the space of 7 months I'm on 10 tablets a day and feeling very down. Amongst trying to run my business which I've only had for 18 months. It's my skin and kidneys which are under attack and it's a lot to take in. Most people don't really know about lupus and we all look pretty well! My uncle even asked me yesterday if my lupus had not gone yet... He thought a course of tablets then all done with. I wish... anyway love to you x

[lupus-support1 Administrator in reply to loopylewis]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Your comments and observations are all too familiar: the "how well you look?" Or, "The tablets must be working!" This results in our having all kinds of feelings which include why people do not understand and that looking well does not mean feeling well!

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

[lupus-support1 Administrator in reply to Tereslove]

Both depression and anxiety can be related to lupus in two ways. First, as a result of the inflammatory process; and second, these are "normal" reactions to living with a painful condition that strikes randomly and creates uncertainty. What you once "looked like" and could do, seem to have disappeared and as a result, you can have all kinds of feelings. Part of this process involves getting a diagnosis, but also grieving for what you have lost.

If you would like to have some information about psychological support, I recommend joining the LuPUS MB - details above. You can also email me privately here: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes,

Ros