HELP ME PLEASE w/signs & symptoms~~~going batty with worry :(

General
1

Hello everyone,

First it is wonderful to see all the love & support for one another on here. Now a little about lil ole me :)

I am a 43 yr old female with recent news of a +ANA. I am trying my hardest to tell myself it is a false positive becasue I do not have enough symptoms.

Now that I am waiting for results on a full work up, I am starting to question my past pain?? I went to a Rheumotoligst June of last year for hip pain that radiated to my back, knee & ankle. I wanted to cut my leg off! An x-ray showed Osteoarthritis. I returned one month later in July to have a steroid injection in my hip (bursa area). Blood work was drawn. I did not return since I knew what was causing my pain & dealt with it even though I had a few flare ups since then.

Well I went back last Tues to ask for another injection, it was flared up again, this time it was both hips, & both legs hurt & my back was killing me! My knees feel like softballs! An x-ray showed Osteoarthritis in my left hip now too. (****Note: this didn't surprise me since I was diagnosed w/ Osteopenia when I was 33yrs old, plus went through full blown menopause at 30yrs old. Long story, I'll share another time :) So my hips didn't shock me too much.

Soooooo, while he was looking at my chart on the computer he told me I had a +ANA & I needed a full work up of tests. His face kinda turned pale, well Guess what??? That result was flagged from my last visit in July, LAST YEAR, 2012! WOW!! I was positive last year & no one called me!!!!

This is where I am confused & worried. Please help me with my questions~ I have goggled tons, but want to hear it from real people, not text book symptom definitions. I have other ailments so I have been telling myself it is from those & could very well be a false +. Trying to stay positive. Either way I will take the bull by it's horns & fight!!

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Is the pain I described above sound like the norm for some of you?

Do your knees feel as big as softballs, tight & sore, but no visible swelling?

Some days, you are really achy from the waist down like you ran a marathon all day or sometimes bad enough to feel like you have the flu. (with me I had no explanation why)

If you have leg aches, is it early in the day or later?

Do most people get the butterfly rash, or a rash that looks very similar to ring worm?

Sore to touch, like a bruise, around your knees & hips.

One sided rib pain when twisting or just by touching. (side of rib cage, not chest ribs)

Pain in back of eyeball & dry?

How long can a flare up last?

Is the discomfort daily, then you have flare ups on top of it?

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I guess that is it for now, I have taken up enough of your precious time already.

Thanks so much for reading my story :)

Shannon~

2

What you're describing could be symptoms of Lupus, but could also be symptoms of many other Auto-immune diseases. I'm just learning all of this, as I received my diagnosis just under a month ago. My muscle and joint pain is worst in the morning and night (after going to bed). I don't think all Lupus sufferers exhibit the facial rash, but I have heard of people having a bite-like rash (similar to ringworm) either instead of or in combination with the butterfly rash. Skin sensitivity, muscle and joint aches are symptoms of Lupus. I have a colleague who is ANA+ (a low positive of 2 or 3), but does not have Lupus. She says she was told that meant that she had a greater risk of developing it, but she could very well never have it develop. My own GP and Rheumy were both SURE I didn't have it because I didn't have organ failure. Go figure! This disease affects everyone differently. I know a couple of people who have lived with it for decades, with only occasional flares. They have perfectly normal, active lives.

Whether your tests come back positive or not, I wish you the best of luck, and hope they are able to treat your illness. God bless.

3

Yes, some whose tests come back with a high ANA titer have a 1 in 100 chance of progressing to full-blown Lupus. I am THAT special.

It doesn't really matter what label your stuff has. What is being done to fight it? You have to go to war against inflammation and stop that nasty Arthur Itis in his tracks.

I was taking Enbrel.and methotrexate and Etodolac. The Enbrel started to fade - it took.seven years, but it faded. So now I asked to switch. Luckily my Rheumy and I come to agreement rapidly and now I am on Orencia self injectable. I am so eager for Wednesday's when I get my shot and feel so much better. By next Tuesday I am an unhappy camper again, but I get shot on Wednesday!

Yeah it is kinda silly to be like a kid in a candy store over my medicine, but I like winning the fight! It feels great to knock the stuffing out of Arthur Itis.

So get your Rheumy to hit it and hit it hard. What we have has to be treated aggressively to stave off damage, ok?

Wishing you both warrior woman success!

Regards from Rosie

4

Lupus mimics so many different things, it's hard to tell.

I get achy like I have the flu. The aches tend to get worse as the day goes on. I have never had a rash. I've read somewhere that only 50% of lupus patients get the butterfly rash.

The best thing I can tell you is to arm yourself with knowledge, just in case. Some people just have a +ANA and are perfectly normal, they just have wacky blood. I have also read (I do a lot of reading) that antibodies for autoimmune diseases tend to develop in a sequence... first the ANA, then X, Y, and Z, then A, B, and C develop. It took me two years after my first +ANA before I showed any other antibodies. I'll have to find it in my book and post the sequence for everyone.

I would also start tracking times that you have a possible symptom. Take the aches, mark on a calendar the days you are achy, if it gets better or worse with movement or as the day goes on, if you've taken any medications and how much they helped with that symptom, and how long it lasts. It's very helpful to both yourself and your doctors to track how you're feeling because lupus symptoms don't always happen all at once, they're scattered.

Wishing you the best! Keep us updated.

5

Also just osteoarthritis alone can be the cause of your aches and pains And it can progress based on many factors- osteopenia and post menopausal sure don't help. Your blood work should give more info on underlying causes but you can have a positive ANA without autoimmune disease too

6

I can say that I’ve had all your symptoms and then some hon. I was diagnosed with Lupus in 1994. I was second stage of that time I thought many years with art and then it went to rematch in for about five to eight maybe. now its been acting up for over a year now straight. I’ve been hospitalized about 10 times this year already with kidney issues are in kidney infections kidney stones gallbladder issues. I do have a kidney disease on top of the lupus though. my back is hurting so bad my knee hurts all the time my hips hurt all the time. it is so sad to be 36 years old and feel like I’m dying. I just had the full blood work ran up a can even though I said it diagnosed with this many of times and my lupus markers were low and my and it was negative but I feel like my balls are twisting and breaking. there is a chance that there can be false positives in false negatives. the best thing to do is just go with how you feel. I am going to a pain management starting this next weekend hope to god they can do something because I can’t live much longer like this. I have had injections in the past and I refuse to get them ever again there too painful. if I have to sit for more than an hour I am hurting so bad I can barely get out of bed for days if I have to walk for more than three blocks I’m hurting so bad I can’t get out of bed for 3 days. the eye pain I get that I get the dry eyes I’ve had problems with most of my organs except for my heart but I found out we have heart disease, bone disease and bone cancer in my family. I didn’t have the with this rash for a long time and now I’m getting it everyday. I really hope that you can get some relief for sometime soon hun. nothing like the not knowing and then when you finding out being puzzled. life is short so do what you can to enjoy it find out all you can do to make yourself more comfortable. when I ate all natural fruit smoothies I felt amazing but I haven’t been able to keep up with financially. I am fixing to order the Tommie Copper stuff. I pray it works. good luck keep us informed and stay blessed…
p.s sorry for typos I did this on my phone

7

Yes to feeling like flu and marathon. Yes to dry eyeballs. Yes to early menopause. Symptoms pretty much daily. Flares are on top of that… I seem to be in a prolonged flare. My flares are weeks or months long.

8

Beaker

I am sorry you are going through all of this. And i am sorry that your first ANA was positive and no one told you, how ever just having a positive ANA doesn’t mean it is lupus.



Please have the ring worm rash biopsied. But yes the lupus rash can look like that and you can also get a rash looking like that from thyroid Disease as well. That is what my tumid lupus rash started as on my left upper arm, in fact I thought it was ring worm! I posted pictures of my rashes on my LWL page if you would like to have a look for yourself. By having the rash biopsied by a dermatologist it can help with the dx of what is maybe going on.



I as have a lot of hip pain. Sometime I feel like my legs are not communication with my Brain with is causing them not to work right! Lol! I too have osteo in all my joints and received injections. I have negative blood work for SLE, but I continue to have all the symptoms. I was dx with Cutaneous lupus first and then a few years later with SLE.



Like someone else said above about your issues, it could be a lot of different things. Stay the course, be positive and see what happens with your Doctor.



Best of Luck with your journey! I am thinking positive for you as well. Whatever you do please stay out of the sun until this is figured out…

Deenie

9

Hi Beaker,

As you have read...most of us lupies have the flu like symptoms and dry eyeballs. The achy knee and legs are so hurtful that I just deal with the pain everyday. I guess you would say we have to go above our selves to tolerate the pain. ( I hope you all understood that )...that is the only way I can describe it. You will see that the storms will really send you over the edge. Recently I was going to move to Florida ( I live in Nevada ) but I talked to the group, that was the wisest decision I have made. I still live in Nevada and will for a long time, I do feel much better here. We have alot of sunny days thank goodness. Read some of the old archives alot of good information. We are all here for you....Big hug....B

10

I have been on a flare for the past 10 years but my blood tests never show it and I have never had the butterfly rash but my cheeks get really red off and on for no reason. I have extremely dry eyes where contact lenses pop off as they have nothing to stick to. I don’t always show swelling but my ankles and knees feel like they are about 3 times as big. My hands always hurt since for ever! I was finally diagnosed with Lupus but it took me 10 years to get a final diagnoses as it looked like psoriatic arthritis then RA and finally lupus. Don’t ignore it, make sure you keep going back! Good luck!

11

Oh yes im very familiar with the softball knees! And the feeling of running a marathon! Im sorry, hang in there, lots of good info and people on this site

12

I can tell you what my symptoms are and they are about the same. I was hurting a lot back some may. they thought I had a blood clot going to my lungs, so off to the er I went. I had the purple veins in my legs popping, my feet were purple, my toes looked like they were a story from the nutty professor, I am right handed, and my hand burned my skin hurt, my fingers wrist and elbow looked like I was fat. I went from weighing in at 188 pounds to 230 pounds in two weeks. my chest hurt sharp pains like someone stabbing me. One minute I was nice and friendly, then all of a sudden I was the meanest person out there. I could not sleep at night and if I did I woke up in a sweat. I did not eat but still gained weight. I did not want to do anything go any where my family doctor told me to get out and exercise, I said I would if I could walk, I got another opinion, he sent me to the er, were after 11 hours they told me nothing. mri, ct scan blood work every hour, xray untra sound. next to a heart doctor, where I got a stress test, nothing more blood work, stress test came back and said I was healthier than a marathon runner. sent to an arthritis doctor, said yes you have lupus with rayman's disease, and ryman arthrists with a vit d diffency. I just wonder how long I have had it because I am very sensitive to sunlight, I have the butterfly patch in my hair but was always told oh it pyscrisis and was given coal shampoo. depression comes and goes, but when I was put on depression pills they made me foggy, sleep all the time as in I would take a pill and 15 minutes later I would be sleep for hours. I have the little round spots on my legs and have them pretty much all my life, honestly they look like ringworm but if you look close to them they look like dried skin. I ve had 4 miscarriages and a daughter that I had preclampcy with. I have dry mouth all the time, I am always drinking something I forget everything unless I make a list, I do mean everything. hope that helps. im just 2 weeks into the pills and I see a big difference well with swelling and the sweats are gone, but I still have everything else.

13

Shannon, big hugs. You are not the only one whose stuff has fallen through the cracks at a doctor's office when you should have been called and a visit set up. It has happened so much with my primary, I'm looking for another. If it happens once, consider it human error, more than that, a disorganized doctor and office.

People can have a positive ANA and not have autoimmune disease going on. And some of us will test positive or negative depending on which way the wind is blowing at any given moment. A good rheumy will go by a combo of tests and especially symptoms. You can have lupus and your ANA always be negative. There is someone here, can't remember who.

See a good eye doc about the pain behind your eye and dryness. Inflammatory uveitis can be helped. Also, many people with 1 auto immune disease can have others at the same time, so often hard to tell what is going on. The doctors call us confusing, puzzling, complicated, or don't want to treat us because it is too hard for them. Sometimes a doctor will enjoy the chance to solve the puzzle that is you.

I'm going through lower back, hip, knee and foot pain right now. 9 out of 10 without meds, 7-8 when taking them. My doctor doesn't believe in using pain meds, but after examining me, wrote a script with 11 refills even though I said I didn't want them. Many of my joints crunch bone against bone because the cartilage is gone, and a number of joints have large calcium deposits in there. There's more, but wanted to show you you are not alone. I just had to purchase my first can to help me to walk.

Ask for and keep a file of all test results, discs for your computer of any radiology done, doctors reports with findings and diagnosis, etc. Get a good old fashioned calendar, with big spaces, to write down appointments.

Only about 50 percent of those with lupus get the butterfly rash on their face. I do not, but have the same kind of rash from my neck to my sternum. It gets worse with sun exposure, or when in a flare. There are also different kinds of lupus.

My best advice to you is be your own best advocate, take life moment by moment, and try not to let your health no matter what diagnosis you are stamped with, define your whole life. Live well, laugh, love, and set realistic goals you can accomplish as able.

hugs,

Perplxed

14

I just wanted to add, make sure you get checked for Lymes disease because the symptoms are similar! Be well!

ohsoperplexed said:

Shannon, big hugs. You are not the only one whose stuff has fallen through the cracks at a doctor's office when you should have been called and a visit set up. It has happened so much with my primary, I'm looking for another. If it happens once, consider it human error, more than that, a disorganized doctor and office.

People can have a positive ANA and not have autoimmune disease going on. And some of us will test positive or negative depending on which way the wind is blowing at any given moment. A good rheumy will go by a combo of tests and especially symptoms. You can have lupus and your ANA always be negative. There is someone here, can't remember who.

See a good eye doc about the pain behind your eye and dryness. Inflammatory uveitis can be helped. Also, many people with 1 auto immune disease can have others at the same time, so often hard to tell what is going on. The doctors call us confusing, puzzling, complicated, or don't want to treat us because it is too hard for them. Sometimes a doctor will enjoy the chance to solve the puzzle that is you.

I'm going through lower back, hip, knee and foot pain right now. 9 out of 10 without meds, 7-8 when taking them. My doctor doesn't believe in using pain meds, but after examining me, wrote a script with 11 refills even though I said I didn't want them. Many of my joints crunch bone against bone because the cartilage is gone, and a number of joints have large calcium deposits in there. There's more, but wanted to show you you are not alone. I just had to purchase my first can to help me to walk.

Ask for and keep a file of all test results, discs for your computer of any radiology done, doctors reports with findings and diagnosis, etc. Get a good old fashioned calendar, with big spaces, to write down appointments.

Only about 50 percent of those with lupus get the butterfly rash on their face. I do not, but have the same kind of rash from my neck to my sternum. It gets worse with sun exposure, or when in a flare. There are also different kinds of lupus.

My best advice to you is be your own best advocate, take life moment by moment, and try not to let your health no matter what diagnosis you are stamped with, define your whole life. Live well, laugh, love, and set realistic goals you can accomplish as able.

hugs,

Perplxed

15

Thank you for responding to my plea Jazmin. This is all puzzling to me. I too wish you the best. Stay well & positive :)

Jazmin said:

What you're describing could be symptoms of Lupus, but could also be symptoms of many other Auto-immune diseases. I'm just learning all of this, as I received my diagnosis just under a month ago. My muscle and joint pain is worst in the morning and night (after going to bed). I don't think all Lupus sufferers exhibit the facial rash, but I have heard of people having a bite-like rash (similar to ringworm) either instead of or in combination with the butterfly rash. Skin sensitivity, muscle and joint aches are symptoms of Lupus. I have a colleague who is ANA+ (a low positive of 2 or 3), but does not have Lupus. She says she was told that meant that she had a greater risk of developing it, but she could very well never have it develop. My own GP and Rheumy were both SURE I didn't have it because I didn't have organ failure. Go figure! This disease affects everyone differently. I know a couple of people who have lived with it for decades, with only occasional flares. They have perfectly normal, active lives.

Whether your tests come back positive or not, I wish you the best of luck, and hope they are able to treat your illness. God bless.

16

Alley, this is true, I didn't even think of that. Thanks~

Ohsoperplexed, Wow, big ((hugs)) to you. I am sorry for your intense joint pain. I appreciate you taking the time to respond. This has really hit me hard & I am completely puzzled. Lupus never crossed my mind when I went to the Rheumy, I knew I had osteopenia & when my hip started hurting & continuing to get worse & I could barely walk, I knew something was wrong. So off I went. Osteoarthritis it was, so since I had a diagnosis I didn't feel I needed to keep going back for flare ups. I do NOT like pain meds, rest, ice & hot baths is my choice. Then it got to the point I went ahead & took the Mobic he prescribed, that didn't help much, so I figured why take it if it doesn't help & tears up my stomach.

A year later & I had all the flare ups I could take & here we are. I never asked what could it be? Again, knew it was osteoarthritis, I just wanted a cortisone shot.

Crazy how I just went to the eye doctor a couple months ago for the eye pain & dryness. I got lubricant drops (not prescription) & reading glasses. He didn't think it was anything to worry about, but my eye is still tender if you push on it or strain it looking down. & both eyes are dry no matter how much water I drink or lubricate them.

I have been getting a ring worm looking rash on my sides, right above my hips for over a year now, off & on. Hydrocortisone makes it worse!! I just thought it could be a fungus becasue it seems to come in the summer. Still can be a coincidence.

I have been paying more attention to my aches & pains, pretty bad last few days due to weather possibly. Funny how I have been telling my husband, honey my joints hurt like it is winter & raining. I never thought they could hurt in the summer rain & in the 80's. ???

Well again, thanks :) Take care of yourself & paint your cane with bright cheerful colors :)



Alley said:

I just wanted to add, make sure you get checked for Lymes disease because the symptoms are similar! Be well!

ohsoperplexed said:

Shannon, big hugs. You are not the only one whose stuff has fallen through the cracks at a doctor's office when you should have been called and a visit set up. It has happened so much with my primary, I'm looking for another. If it happens once, consider it human error, more than that, a disorganized doctor and office.

People can have a positive ANA and not have autoimmune disease going on. And some of us will test positive or negative depending on which way the wind is blowing at any given moment. A good rheumy will go by a combo of tests and especially symptoms. You can have lupus and your ANA always be negative. There is someone here, can't remember who.

See a good eye doc about the pain behind your eye and dryness. Inflammatory uveitis can be helped. Also, many people with 1 auto immune disease can have others at the same time, so often hard to tell what is going on. The doctors call us confusing, puzzling, complicated, or don't want to treat us because it is too hard for them. Sometimes a doctor will enjoy the chance to solve the puzzle that is you.

I'm going through lower back, hip, knee and foot pain right now. 9 out of 10 without meds, 7-8 when taking them. My doctor doesn't believe in using pain meds, but after examining me, wrote a script with 11 refills even though I said I didn't want them. Many of my joints crunch bone against bone because the cartilage is gone, and a number of joints have large calcium deposits in there. There's more, but wanted to show you you are not alone. I just had to purchase my first can to help me to walk.

Ask for and keep a file of all test results, discs for your computer of any radiology done, doctors reports with findings and diagnosis, etc. Get a good old fashioned calendar, with big spaces, to write down appointments.

Only about 50 percent of those with lupus get the butterfly rash on their face. I do not, but have the same kind of rash from my neck to my sternum. It gets worse with sun exposure, or when in a flare. There are also different kinds of lupus.

My best advice to you is be your own best advocate, take life moment by moment, and try not to let your health no matter what diagnosis you are stamped with, define your whole life. Live well, laugh, love, and set realistic goals you can accomplish as able.

hugs,

Perplxed

17

Thanks Rosie for the advice. Wednesday right around the corner. Happy Shot day!! Take care~

RosieS said:

Yes, some whose tests come back with a high ANA titer have a 1 in 100 chance of progressing to full-blown Lupus. I am THAT special.

It doesn't really matter what label your stuff has. What is being done to fight it? You have to go to war against inflammation and stop that nasty Arthur Itis in his tracks.

I was taking Enbrel.and methotrexate and Etodolac. The Enbrel started to fade - it took.seven years, but it faded. So now I asked to switch. Luckily my Rheumy and I come to agreement rapidly and now I am on Orencia self injectable. I am so eager for Wednesday's when I get my shot and feel so much better. By next Tuesday I am an unhappy camper again, but I get shot on Wednesday!

Yeah it is kinda silly to be like a kid in a candy store over my medicine, but I like winning the fight! It feels great to knock the stuffing out of Arthur Itis.

So get your Rheumy to hit it and hit it hard. What we have has to be treated aggressively to stave off damage, ok?

Wishing you both warrior woman success!

Regards from Rosie

18

Ballerina,

I agree about Lupus mimicing other disorders/diseases too. I guess that is why I am so confused. Not sure if I am testing a false positive or could possibly have it. There are signs/symptoms that I have had & never thought twice about Lupus, Now I am thinking could it have been it all along or just a coincidence???

I will be calling my rheumy again tomorrow to see if the rest of my labs are in. I will touch base with you guys when I find out anything. I appreciate your support along with everyone else. Thanks & take care~ Oh, the sequence you mentioned, I would be interested in seeing it when you get a minute, don't go out of your way.

Ballerina8876 said:

Lupus mimics so many different things, it's hard to tell.

I get achy like I have the flu. The aches tend to get worse as the day goes on. I have never had a rash. I've read somewhere that only 50% of lupus patients get the butterfly rash.

The best thing I can tell you is to arm yourself with knowledge, just in case. Some people just have a +ANA and are perfectly normal, they just have wacky blood. I have also read (I do a lot of reading) that antibodies for autoimmune diseases tend to develop in a sequence... first the ANA, then X, Y, and Z, then A, B, and C develop. It took me two years after my first +ANA before I showed any other antibodies. I'll have to find it in my book and post the sequence for everyone.

I would also start tracking times that you have a possible symptom. Take the aches, mark on a calendar the days you are achy, if it gets better or worse with movement or as the day goes on, if you've taken any medications and how much they helped with that symptom, and how long it lasts. It's very helpful to both yourself and your doctors to track how you're feeling because lupus symptoms don't always happen all at once, they're scattered.

Wishing you the best! Keep us updated.

19

Poobie, I am praying it is just my osteo. I am hoping the rest of my labs are in tomorrow. Thanks : )

poobie said:

Also just osteoarthritis alone can be the cause of your aches and pains And it can progress based on many factors- osteopenia and post menopausal sure don't help. Your blood work should give more info on underlying causes but you can have a positive ANA without autoimmune disease too

20

First I want to give you props for typing all of that on your phone! Wow :) Second, I am sorry you are going through so much at such a young age & for so long. At the same time your attitude is awesome! Thank you so much for taking time out of your day to talk to me. I will update everyone once I get the rest of my labs back this week. Hope you have a better week managing your pain. ((hugs))

Destiny Scott said:

I can say that I've had all your symptoms and then some hon. I was diagnosed with Lupus in 1994. I was second stage of that time I thought many years with art and then it went to rematch in for about five to eight maybe. now its been acting up for over a year now straight. I've been hospitalized about 10 times this year already with kidney issues are in kidney infections kidney stones gallbladder issues. I do have a kidney disease on top of the lupus though. my back is hurting so bad my knee hurts all the time my hips hurt all the time. it is so sad to be 36 years old and feel like I'm dying. I just had the full blood work ran up a can even though I said it diagnosed with this many of times and my lupus markers were low and my and it was negative but I feel like my balls are twisting and breaking. there is a chance that there can be false positives in false negatives. the best thing to do is just go with how you feel. I am going to a pain management starting this next weekend hope to god they can do something because I can't live much longer like this. I have had injections in the past and I refuse to get them ever again there too painful. if I have to sit for more than an hour I am hurting so bad I can barely get out of bed for days if I have to walk for more than three blocks I'm hurting so bad I can't get out of bed for 3 days. the eye pain I get that I get the dry eyes I've had problems with most of my organs except for my heart but I found out we have heart disease, bone disease and bone cancer in my family. I didn't have the with this rash for a long time and now I'm getting it everyday. I really hope that you can get some relief for sometime soon hun. nothing like the not knowing and then when you finding out being puzzled. life is short so do what you can to enjoy it find out all you can do to make yourself more comfortable. when I ate all natural fruit smoothies I felt amazing but I haven't been able to keep up with financially. I am fixing to order the Tommie Copper stuff. I pray it works. good luck keep us informed and stay blessed..
p.s sorry for typos I did this on my phone