Wondering What Is Going On With Me

My C Reactive Protein is 2.5 and my ANA is positive. I have really bad leg pain and get a fine rash when in the sun for very long. It's worse the first few times I'm in the sun the beginning of summer. I also have mouth ulcers, fatigue, extremely dry eyes and mouth. I have been diagnosed with mild Lupus (whatever that means) and suspected Sjogren's. The Schirmer's tests have come showing I have severe dry eyes. I also have arthritis in my knees, diabetes, hypothyroidism, retain water in my legs and swelling, depression and anxiety. I show white blood cells in my eyes that attack my cornea. My vision gets extremely blurry when that happens. They put me on a steriod drop when that occurs. I currently take or use: vimovo, furosemide, xanxax, pristiq,metformin, hydroxychloroqine, synthroid, restasis, vitamin D and a regular vitamin.

I feel like a walking pharmacy at times. I have my good days that I feel like I can do anything. Then I invariably overdo it and end up with my legs hurting so bad I can hardly walk for several days. Thank goodness for the meds or I wouldn't be able to have good days. I'm hoping that one day I will be able to go back to work, but as of now I can't walk too long or sit too long without it hurting. My husband is a blessing and never complains about my pain or my not being able to work. He goes to every Dr. appt I have whether it be with my GP or my Rhuemy. I don't know what I would do without him.

Are my symptoms and what I'm going through normal for Lupus or is it just me?

I'm really not sure how I am supposed to post this, so if it's wrong would someone please let me know. Thank you so much for reading my post.

Hi Della,

C Reactive Protein is 2.5 means (CRP) it's the amount of protein in your blood which causes inflamation but the inflamation could be anywhere in your system but it's best to ask your specialist how bad it is with the reading it's given off and your ANA showing positive gives them more info on what's actually happening with your system and it showing mild lupus means it's not to strong in your system, both my ANA & ENA came in high showing i had Lupus etc and your other symptoms of dry eyes/ulcers/fatigue and dry mouth could be sjogren's which they've said as i also have sjogren's bad in my system which is an A1 Disease.

I also have hypothyroidism, depression, and low sugar but i have noticed while being ill that lupus in general does thrieve off depression and can make it worse then your symptoms feel alot worse also, so try and stay carm as best as possible because when it hits me i do cry alot i feel relieved them my symptoms feel more.

Regarding your white cells have you been tested for anemia as it can work both ways regarding high red cell count and also white.

You may have good days but i do suggest taking your daily routines by pacing them out so that you don't get over doing it....your hubby sounds like mine very caring and every appointment i attend he's with me and soon steps in and speaks up if he wants more answers but this support helps we all so much.

The symptoms your having is what lupus gives off and if you do have sjogrens like i mentioned you will also have the ones you've mentioned above.

((Hugs to you)) Tez xx

I'm certainly not an expert, but all that you have mentioned sounds all too familiar in regards to Lupus. I feel stupid, but I don't know anything about Sjogren's. Is it common for Lupus patients to have this?I too used to be so very active. I was involved in acrobats, tap,& ballet as a young girl, and taught ballet for a while. I love to sketch portraits, but have difficulty with that due to chronic back problems. Currently I have a broken back and too many other problems to list, but this debilitates me extremely. I also have diabetes, rheumatoid arthritis,osteoarthritis and addison's. I was diagnosed with Lupus about 2 yrs ago. I think if I had anything to complain about is I can't do any gardening and that really upsets me lately. There's so much I would like to do..... Anyway, I noticed that you have swelling in your legs Della. I too have this only on my left side, and my foot swells too.

My husband is wonderful as well. and pretty much does everything here. Sometimes I get those guilt feelings about this, but I know that he wouldn't do this if he didn't want to. I guess I feel like if it weren't for me he wouldn't be put in this position.....a lot of men would have left the minute i said I couldn't stand up to cook or do the housecleaning! lol

Again, I'm not an expert, but everything you mentioned sounds typical of Lupus symptoms....to me.

I hope that you have more good days than bad and that you find a way to have some happiness even through the bad days.

;) Gail

Dear Della,

Everyone who has lupus experiences many similar but also many different symptoms. What is normal for you may not be normal for others. I too however have good days and bad days. Sadly, it seems like my good days are becoming less frequent now and my bad days are becoming more frequent. My pain has also increased and in new and different places than I had before. I have developed a severe skin condition that is very annoying. It appears to be getting a little better since I tried a remedy Dr. Oz recommended on his tv show of applying red cayenne peper and extra virgin olive oil to my scalp and sleeping with it on all night. Surprizingly it did not burn.

I also supper with a thyroid condition and have had anxiety (mostly from a bully boss) and stresses of daily life. Last eyar I was diagnosed with fybromayalgia and psoriatic arthritis. My legs and arms are so weak and I can't lift myself up anymore if I get down on the floor or ground. This is very depressing because I love gardening. I wonder if I will ever regain the strength in my legs.... Good luck. I will add you to my prayer list.

Wanda (sobby802)

Dear Della,

Your symptoms are so familiar. The number of pills I take every day would gag a horse. Of course I'm not a horse. Even though I'm "under control" according to the lab tests, I still have symptoms. My rheumy is new to me and the one I had for eight years retired. The docs go by the labs. I will have to break in this new guy.

I take Tyelenol extended release for pain in the day and at night real pain pills. I have to stay out of the sun. 5 minutes will severely burn me. There a days when I feel great and days that I just have to lay in bed. I have sjogren's along with two other autoimmune diseases the sjogren's bothers me more than the lupus . . . dry lungs, nose, mouth, eyes (take salagen), really bad joint pain. So, there's more to the "pains." When our bodies are tired and run down, we have to listen. There have been many fun happenings and invites that I had to cancel.

My lateest curve ball is that I have hyponutremis (low salt in my blood). I have to salt everything I eat . . . My dear you're not alone. Hang in there and don't be afraid to ask for what you need.

The best to you,

USAgurl <8>}

yep. It's lupus. It sucks, right? But thank goodness you have good days too. i am trying to learn to pace myself bc i am like you, when i feel good it feels too good to rest...I like to rearrange the furniture and clean closets...hey, wait a minute...is that what I do for FUN when I feel good? eek. I think i have another problem on top of lupus.

I think I have the same problem, Janice. On the good days I feel like I can move mountains! I've yet to find that happy medium and I sure hope I find it quickly.

janice said:

yep. It's lupus. It sucks, right? But thank goodness you have good days too. i am trying to learn to pace myself bc i am like you, when i feel good it feels too good to rest...I like to rearrange the furniture and clean closets...hey, wait a minute...is that what I do for FUN when I feel good? eek. I think i have another problem on top of lupus.

Thank you so much USAGURL! I appreciate your replying to me. There does come a time when it's "under control"? I so look forward to that day! I'm sorry to hear that you that you have had a new thing added. My Rheumy did tell me that these things piggyback on each other. That sure doesn't sound good.

I sure hope you feel better!

Della

Hi Tez,

I have been tested for anemia, and thank goodness I'm not. That is excellent advice to try and pace my daily chores a little more and I will have to try that :) Though there seem to be days when the chores just don't get done. My husband does the same as your's. :) He asks questions and helps me, when I get foggy, to remember things that have happened. I need to get better about keeping a journal to take with me to Dr. appts.

I hope you are having a good week!

Della

Hi Gail,

My Rheumy says it is normal for autoimmune diseases to piggyback on each other. I have had dry eyes and mouth for years and with the lupus they tested me for Sjogren's. I take a water pill for the swelling in my legs which helps a tremendous amount. Both my GP and Rheumy keep a close eye on my legs and my feet. Have you mentioned the swelling to your Dr.? I sure hope you do and that he can give you something to help with it. I know how miserable it can be.

It is so hard to not be able to do all that we were able to do before. It sounds as if you are very talented and I'm so sorry to hear about your broken back. I pray that you heal quickly, so you can sketch again.

I miss gardening for hours also. I take a chair and sit it next to my flower beds when it's dusk and pull weeks for a little bit. I walk to the garden and look it over while my husband hoes and waters. I hope to someday be able to get out there with him to hoe and pick vegetables. I just need to learn moderation.

It sounds as if we are blessed to have wonderful husbands! I feel guilty at times too for not being able to do all that I could before, but he tells me not to worry.

I hope that you are having a wonderful week, and thank you!

Della

Dear Wanda,

I am quickly learning that there are so many different symptoms with Lupus and not everyone has the same ones. What a tricky disease. I'm so sorry to hear that your bad days are outnumbering your good days.

I get a rash on my face and when I'm in the sun I get a rash on my arms if they aren't covered. Im so glad that you have found something that helps with the rash on your scalp. I'm praying that I get stronger and that my meds continue to work and let me inprove. I will say the same prayers for you!

Take Care!

Della

Hello Della,

Well i'm glad you don't have anemia because that alone is a nightmare feeling tied all the time plus weak...i eat quite abit of chocolate to get that extra boost at times.lol

Yes always pace cleaning etc as it helps and it does keep ontop of things and when your tied out your able to rest more with no worries..i've got OCD and before this turned my life around i loved keeping ontop of things but that all had to stop to a slow pace.

It does help if you've got your hubby, family member or friend with you who know what your going through and give that extra support incase foggyness over clouds we...which is more or less 80% of the time.

My weeks carrying on as normal got no choice mate "Thanks" xxx

Della said:

Hi Tez,

I have been tested for anemia, and thank goodness I'm not. That is excellent advice to try and pace my daily chores a little more and I will have to try that :) Though there seem to be days when the chores just don't get done. My husband does the same as your's. :) He asks questions and helps me, when I get foggy, to remember things that have happened. I need to get better about keeping a journal to take with me to Dr. appts.

I hope you are having a good week!

Della

Hi Della, sorry that you are going through this situation "Living with LUPUS ". Yes there are days that you will feel great and able to do anything , and then comes the days where you are in so much pain it hurts so bad and the only thing that you are able to do is stay in the bed !!! smile But don't stress , just stay strong and fight , and take your meds. ... Get as much rest as possible even throughout the day ( take breaks to rest - lay down for a moment ). It's good that your husband give you the support that you need . And remember we here are also . Well hope that this helps in some kind of way !!! Hope that you feel better soon ... Beverly L.

Hello Della,

How are you feeling today and i hope it's abit less pain free for you.

Beverly as given sound advice...because everyday issues do have to be took steady or else you'll ware yourself out and it's not worth it and alot of people do diary's and also note down daily if they can remember what the illness is doing to them as it all helps when you see the specialist.

Your husband though supporting you like mine goes such along way...i do know that if i had'nt got that i'd go completley mad and especially having no children to turn to either.

((Hugs to you)) Terri xxx



Tez_20 said:

Hello Della,

Well i'm glad you don't have anemia because that alone is a nightmare feeling tied all the time plus weak...i eat quite abit of chocolate to get that extra boost at times.lol

Yes always pace cleaning etc as it helps and it does keep ontop of things and when your tied out your able to rest more with no worries..i've got OCD and before this turned my life around i loved keeping ontop of things but that all had to stop to a slow pace.

It does help if you've got your hubby, family member or friend with you who know what your going through and give that extra support incase foggyness over clouds we...which is more or less 80% of the time.

My weeks carrying on as normal got no choice mate "Thanks" xxx

Della said:

Hi Tez,

I have been tested for anemia, and thank goodness I'm not. That is excellent advice to try and pace my daily chores a little more and I will have to try that :) Though there seem to be days when the chores just don't get done. My husband does the same as your's. :) He asks questions and helps me, when I get foggy, to remember things that have happened. I need to get better about keeping a journal to take with me to Dr. appts.

I hope you are having a good week!

Della

Am doing okay today !!! Not having as much pain - but a little throb !!! smile Am not married , but my kids,family and close friends are wonderful and they do support me through this LUPUS stuff.... Dealing with day to day things do get hard at times but we find the strength to push forward to manage. Well hope that you are doing fine , and feeling okay !!! talk with you later ....Beverly L.

Tez_20 said:

Hello Della,

How are you feeling today and i hope it's abit less pain free for you.

Beverly as given sound advice...because everyday issues do have to be took steady or else you'll ware yourself out and it's not worth it and alot of people do diary's and also note down daily if they can remember what the illness is doing to them as it all helps when you see the specialist.

Your husband though supporting you like mine goes such along way...i do know that if i had'nt got that i'd go completley mad and especially having no children to turn to either.

((Hugs to you)) Terri xxx



Tez_20 said:

Hello Della,

Well i'm glad you don't have anemia because that alone is a nightmare feeling tied all the time plus weak...i eat quite abit of chocolate to get that extra boost at times.lol

Yes always pace cleaning etc as it helps and it does keep ontop of things and when your tied out your able to rest more with no worries..i've got OCD and before this turned my life around i loved keeping ontop of things but that all had to stop to a slow pace.

It does help if you've got your hubby, family member or friend with you who know what your going through and give that extra support incase foggyness over clouds we...which is more or less 80% of the time.

My weeks carrying on as normal got no choice mate "Thanks" xxx

Della said:

Hi Tez,

I have been tested for anemia, and thank goodness I'm not. That is excellent advice to try and pace my daily chores a little more and I will have to try that :) Though there seem to be days when the chores just don't get done. My husband does the same as your's. :) He asks questions and helps me, when I get foggy, to remember things that have happened. I need to get better about keeping a journal to take with me to Dr. appts.

I hope you are having a good week!

Della


Hi Terri,

I had another Dr's. appt Friday and was confirmed as having full blown lupus and Sjogren's. I go back in 3 months to my GP and Rheumy both. I need to call my opthamologist on Monday, as my vision is blurry in my left eye which means my Sjogren's is acting up on top of the lupus pain. My cholesterol was 114 , and my Dr told me he wants it under 100 because I have diabetes. So now I have to add that to my diet to watch. He said if I wasn't diabetic that 130 and under is considered normal. I've been a little stressed and that has probably brought the flare on, but I know with time it will get better.

I'm getting better about my journal and I think that will help a lot. It will be easier to track if something is setting me off.

Hope you are having a wonderful weekend and are feeling ok.

Della

Hello Della,

How are you feeling today and i hope it's abit less pain free for you.

Beverly as given sound advice...because everyday issues do have to be took steady or else you'll ware yourself out and it's not worth it and alot of people do diary's and also note down daily if they can remember what the illness is doing to them as it all helps when you see the specialist.

Your husband though supporting you like mine goes such along way...i do know that if i had'nt got that i'd go completley mad and especially having no children to turn to either.

((Hugs to you)) Terri xxx




The leg pain may be due to poor circulation or intermittent claudication. Have u been checked for Lupus anticoagulant or cardiolipid Ab.? These symptoms you're having sound typical for autoimmune disease.

At on time or another I've had all of them but they are manageable

Hello Della,

Sorry it's took me a few days to reply, not been to good on coming on the site and missed it.

I'm sorry to hear you've got full blown Lupus and sjogren's like myself and if your able to establish symptoms between the two, you'll find the Lupus fighting the sjogrens at times and symptoms may feel worse.

Regarding your eyes you definitely need to see a opthamologist and they'll say how bad your eyes are but sjogrens with diabetes is all you need, as the sjogrens can really hurt the eyes and make them dry and sore plus it does affect the muscles in your body and it starts with the face...i get quite alot of symptoms off it and you've only to get intouch.

Your cholesterol definitely needs testing mine used to be high also...Della the whole lot can stress we and that stress you get Lupus alone loves it and flares can occur more through this, i know it's easy to say and i have such a game at times controlling stress but if you can it will help such alot.

You takecare Della xxx



Della said:


Hi Terri,

I had another Dr's. appt Friday and was confirmed as having full blown lupus and Sjogren's. I go back in 3 months to my GP and Rheumy both. I need to call my opthamologist on Monday, as my vision is blurry in my left eye which means my Sjogren's is acting up on top of the lupus pain. My cholesterol was 114 , and my Dr told me he wants it under 100 because I have diabetes. So now I have to add that to my diet to watch. He said if I wasn't diabetic that 130 and under is considered normal. I've been a little stressed and that has probably brought the flare on, but I know with time it will get better.

I'm getting better about my journal and I think that will help a lot. It will be easier to track if something is setting me off.

Hope you are having a wonderful weekend and are feeling ok.

Della

Hello Della,

How are you feeling today and i hope it's abit less pain free for you.

Beverly as given sound advice...because everyday issues do have to be took steady or else you'll ware yourself out and it's not worth it and alot of people do diary's and also note down daily if they can remember what the illness is doing to them as it all helps when you see the specialist.

Your husband though supporting you like mine goes such along way...i do know that if i had'nt got that i'd go completley mad and especially having no children to turn to either.

((Hugs to you)) Terri xxx




Hi OC Gal,

The first thing I was diagnosed with was PVD. They did the pressure test on my legs reversed that diagnosis. I haven't heard of Lupus anticoagulant or cardiolipid Ab? I have no idea if my Rheumy ran a test for them or not. I am new to Lupus and still investigating and trying to figure out what I need to do for my wellbeing.

Thank you! :)

Della

Hi Terri,

I see my opthamologist every 6 months, but am going to have to give him a call earlier. He normally prescribes steriod drops when the white blood cells show up in my eyes. That's what makes my vision blurry. I use restasis twice a day for the Sjogren's and regular wetting drops in between during the day. It seems if it's not one thing it's another, but it could be a lot worse and I'm grateful that it's not. I thank God everyday.

I hope you are doing ok and enjoying your week.

Della



Tez_20 said:

Hello Della,

Sorry it's took me a few days to reply, not been to good on coming on the site and missed it.

I'm sorry to hear you've got full blown Lupus and sjogren's like myself and if your able to establish symptoms between the two, you'll find the Lupus fighting the sjogrens at times and symptoms may feel worse.

Regarding your eyes you definitely need to see a opthamologist and they'll say how bad your eyes are but sjogrens with diabetes is all you need, as the sjogrens can really hurt the eyes and make them dry and sore plus it does affect the muscles in your body and it starts with the face...i get quite alot of symptoms off it and you've only to get intouch.

Your cholesterol definitely needs testing mine used to be high also...Della the whole lot can stress we and that stress you get Lupus alone loves it and flares can occur more through this, i know it's easy to say and i have such a game at times controlling stress but if you can it will help such alot.

You takecare Della xxx



Della said:


Hi Terri,

I had another Dr's. appt Friday and was confirmed as having full blown lupus and Sjogren's. I go back in 3 months to my GP and Rheumy both. I need to call my opthamologist on Monday, as my vision is blurry in my left eye which means my Sjogren's is acting up on top of the lupus pain. My cholesterol was 114 , and my Dr told me he wants it under 100 because I have diabetes. So now I have to add that to my diet to watch. He said if I wasn't diabetic that 130 and under is considered normal. I've been a little stressed and that has probably brought the flare on, but I know with time it will get better.

I'm getting better about my journal and I think that will help a lot. It will be easier to track if something is setting me off.

Hope you are having a wonderful weekend and are feeling ok.

Della

Hello Della,

How are you feeling today and i hope it's abit less pain free for you.

Beverly as given sound advice...because everyday issues do have to be took steady or else you'll ware yourself out and it's not worth it and alot of people do diary's and also note down daily if they can remember what the illness is doing to them as it all helps when you see the specialist.

Your husband though supporting you like mine goes such along way...i do know that if i had'nt got that i'd go completley mad and especially having no children to turn to either.

((Hugs to you)) Terri xxx