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Old 05-31-2007, 12:47 AM   #1
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Seeking a diagnosis? Going to the rheumie?

Hi guys- I have a few questions, mainly-

Does everyone with lupus have joint pain? And what kind of joint pain?

You see, I've been sick now for several months. I have several slightly enlarged lymph nodes behind my ear and on my neck. I've been running a low-grade fever for about four months. I've had feelings of constantly having a UTI when I infact do not. My urine has been cloudy/foamy during the duration of me not feeling well (four months). I feel so tired. I have no energy. I used to exercise five to six times a week- I had done that for years. Now it's five times a month, if even that.

I don't feel like myself anymore. I get dizzy spells- I've had dizzy spells on and off since I was 18. When I was 18, I went to a neurologist and went through the whole shabang- MRI's, CT scans, everything. They couldn't find anything that would cause my 'vision flips' (my vision literally "flips" so I feel like I've been moved, when infact I have not moved at all- it lasts a second and goes away) and my doctor chalked it up to low-blood pressure.

I'm now 25. For quite a long period of time, I didn't have any of these problems. I felt great- no vision problems, no dizzy spells. I was very healthy and exercised regularly.

But for the past year I've been getting the dizzy spells again, and now for the past four months I've been sick. I've been to the doctor every week. I've had numerous blood tests, which show everything as being fine. My urine cultures are fine. Everything shows that I should be healthy! And yet, I'm not. I constantly feel lethargic and like I have to go to the bathroom. I feel like I have a slight UTI. I'm not prone to UTI's, so I don't know what could be causing that feeling and why it won't go away.

The frustrating thing is that I feel like my pcp is throwing random things to the wall to see what sticks, so to speak. She now wants to send me back to a neurologist, although I don't feel that is the right way to go. I had an ENT examine my lymph nodes (and he said they aren't that enlarged and doesn't want to do a biopsy) and he also recommended I see a rheumatalogist. And yet when I asked my doctor last time about seeing one, she said no since I don't have any joint pain.

I am so frustrated with this. My symptoms (tiredness, slightly enlarged lymph nodes, constantly feeling very thirsty, low grade fever, bladder/kidney involvement, hair loss, Raynaud's Phenomenon, sensitivity to light, been prone to many many MANY infections my entire life) would all be indicative that we should be looking at auto-immune disorders such as lupus or sjogren's. But since I don't have major joint pain (aside from strange back pain and shoulder pain with no rhyme or reason that won't go away) she doesn't want me to go that direction.

Is my doctor right? Or should I be pushing harder to see a rheumie? Any advice on this would be great- thanks. I just want my life back.

Last edited by sillygirl; 05-31-2007 at 12:50 AM.

 
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Old 05-31-2007, 02:52 AM   #2
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Re: Seeking a diagnosis? Going to the rheumie?

Dear Sillygirl, Given your constant thirst, are you being watched very closely for diabetes?

Also, have you seen a urologist? I had years of irritable bladder episodes in which I didn't test positive for a UTI. My GP finally sent me to a urologist, who toyed with testing me for interstitial cystitis. (But I had so many things going on that they didn't want to put me through the tests unless absolutely necessary.)

Now to your question about joint pain & lupus... First off, I'm only a patient, obviously. But in my mind, joint pain is not an absolute requirement. Look at the criteria for diagnosing systemic lupus in the "sticky posts" at the top of the thread list. A person must meet at least 4 of the 11, not necessarily all at once. Thus there's no requirement that a person have arthritis, since that person could meet SOME OTHER 4 criteria.

FYI, in my own case, I had pain from my teenage years on, but along the long bones, shins & arms. It wasn't until my late 30's that my joints started to hurt frequently. By then I had fatigue, weight loss, hair loss, anemia, irritable bladder, irritable bowel (awful---for 20+ years), nonscarring targetlike rashes on arms & torso, photosensitivity, migraine-like headaches, sciatica, urinary stones, ETC. But I *didn't* have the most recognizable things associated with SLE, like the facial butterfly rash or a positive ANA.

I was finally Dx'ed, by a teaching hospital rheumie & a dermatopathologist, with an intermediate "subset" of lupus called SCLE. Interesting you mention Sjogren's. The antibody I finally tested positive for was anti-Ro, which is seen in the SCLE subset of lupus & in Sjogren's. And I learned from these experts that in the SCLE "subset", ANA is positive only about 70% of the time. This it was just my bad luck to be ANA-negative.

I hope you post more when you can & that others here with urinary issues will chip in... Meanwhile, best wishes & bye for now, from Vee

 
Old 07-22-2007, 10:03 PM   #3
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Smile Re: Seeking a diagnosis? Going to the rheumie?

And here I am again, almost two months later.

After going around and around with my doctor, she finally tested for lupus.

And I got the news four days ago- I have a positive ANA for it. This coupled with the fact that over the past month I've now had extreme stiffness and pain in my wrists and fingers...and we think we're on to something. She's 99% sure I have lupus.

Part of me is elated, because I've been sick for about six months now. But part of me is scared, because I'm not quite sure what to excpect with this. I'm 25 and used to being super extremely healthy. I'm a fitness nut and a health food freak. I'm not used to being sickly, and I can't say I'm terribly excited that this will likely be something I'm going to deal with for the rest of my life.

While I've gotten a lot of my energy back (around February-March-April of this year, I was having a terrible time with fatigue and feeling awful), I still have many of the same symptoms I listed in my first post two months ago. The hair shedding, the feeling like I have a UTI when I don't, the slightly enlarged lymph nodes, etc etc.

So off to a rheumie I go. I have an appointment at the end of August. They'll be looking at both Lupus and Sjogren's.

I just thought I'd give everyone here an update. I didn't want to be one of those posters that posts one question and wanders off, never to return.

And I'll possibly be posting much more here, now that I know this is the board I need to be at.

Now the big looming question...to get rid of the brand new Sky roadster convertible my hubby got me for my birthday in April or to just invest in a big, wide brim floppy hat...

(No one can't say that I'm not trying to keep my spirits up).

Last edited by sillygirl; 07-22-2007 at 10:07 PM.

 
Old 07-22-2007, 10:46 PM   #4
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Re: Seeking a diagnosis? Going to the rheumie?

Quote:
Originally Posted by VeeJ View Post
Dear Sillygirl, Given your constant thirst, are you being watched very closely for diabetes?

Also, have you seen a urologist? I had years of irritable bladder episodes in which I didn't test positive for a UTI. My GP finally sent me to a urologist, who toyed with testing me for interstitial cystitis. (But I had so many things going on that they didn't want to put me through the tests unless absolutely necessary.)

Now to your question about joint pain & lupus... First off, I'm only a patient, obviously. But in my mind, joint pain is not an absolute requirement. Look at the criteria for diagnosing systemic lupus in the "sticky posts" at the top of the thread list. A person must meet at least 4 of the 11, not necessarily all at once. Thus there's no requirement that a person have arthritis, since that person could meet SOME OTHER 4 criteria.

FYI, in my own case, I had pain from my teenage years on, but along the long bones, shins & arms. It wasn't until my late 30's that my joints started to hurt frequently. By then I had fatigue, weight loss, hair loss, anemia, irritable bladder, irritable bowel (awful---for 20+ years), nonscarring targetlike rashes on arms & torso, photosensitivity, migraine-like headaches, sciatica, urinary stones, ETC. But I *didn't* have the most recognizable things associated with SLE, like the facial butterfly rash or a positive ANA.

I was finally Dx'ed, by a teaching hospital rheumie & a dermatopathologist, with an intermediate "subset" of lupus called SCLE. Interesting you mention Sjogren's. The antibody I finally tested positive for was anti-Ro, which is seen in the SCLE subset of lupus & in Sjogren's. And I learned from these experts that in the SCLE "subset", ANA is positive only about 70% of the time. This it was just my bad luck to be ANA-negative.

I hope you post more when you can & that others here with urinary issues will chip in... Meanwhile, best wishes & bye for now, from Vee
Thank you so much for responding to me. I feel bad answering this two months later, but oh heck- better late than never.

I've actually been tested for diabetes more times than I can count. I used to have fainting spells when I was younger. As I've gotten older, those have mostly subsided...and they aren't like the dizzy spells I do sometimes now get and the vision flips.

My blood sugar levels were sky high back in March, but for whatever reason they've gone back down to normal and while the doctor always tests, nothing seems to be amiss or that would point to diabetes. They're now looking at Sjogren's, especially since I've had horrible dental decay over the past three years inspite of taking meticulous care of my teeth. I have a great looking smile- but now 75% of my teeth are crowns due to this. My gums are healthy as can be. My dentist couldn't figure out why I've been having so many problems at such a young age (especially since my identical twin sister doesn't) until I mentioned I have a constant dry mouth. My dentist mentioned Sjogren's. I constantly feel thirsty. I drink an insane amount of water everyday. It's awful .

As far as skin rashes go, I've never had the butterfly rash...but I did have another unexplainable skin rash in February of this year, right when I began feeling very poorly. It lasted only five days, but it was bizarre. My doctor couldn't explain it. They were red dots with white around them that spread all over my waist and torso and legs. I'm not sure if that's a lupus associated rash, but no one else has been able to explain it.

I've also noticed that the top of my head is almost bright red (as if it's sunburnt, even though I stay out of the sun) and I occasionally get sores on it. Yuck.

When I first posted here, I was unsure of joint pain. I thought I had never had it, and since I had never had it my doctor did not want to test me. It's actually begun over the past few weeks- and I believe I've actually experienced this before, on and off, for the past few years. I just never paid much attention to it since it isn't severe pain. It's more of a stiffness- like my fingers don't want to work properly, or like I've been clenching my hands into fists all night long. Sometimes I have difficulty straightening my fingers. I also have a hard time writing with a pen or pencil. It also hurts to hold a steering wheel at times. It's not a numbness. My hands just feel very, very stiff. And as someone who is a computer geek that also has played the piano for over 10 years...this is not good news.

I want to say that I've actually had this for awhile, on and off, but just never really took notice. I'm noticing it now!

I also have issues with IBS, just like all of the women in my family. Typically taking probiotics helps, thank goodness.

That's about all I can think of. I'm just really interested in seeing what the rheumie will have to say. Almost everyone I've talked to about this has immediately asked me if I'm going to quit my job, which I find very odd. I love my job, and I consider it to be somewhat low-stress. It can be stressful sometimes, but overall it really isn't. I guess I'm unsure right now as to what is "triggering" me to feel bad, and how I'm going to handle it in the future.

I've only been married for 14 months. My poor husband- he's really getting a run for his money with this whole, "For better or for worse, in sickness and in health" thing. He's been nothing but incredibly supportive and doting, though. I feel very, very lucky.

 
Old 07-23-2007, 02:46 AM   #5
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Re: Seeking a diagnosis? Going to the rheumie?

Sillygirl,

Good luck with your rheumie appt. It's a long haul sometimes to get the DX and find the right mix of meds to make you feel better. Sounds like you are on your way though...

As far as the hat...oh ya, get the big hat, long sleeve shirts, pants and lots of sunscreen and be sure to use it while driving your car!!!! I'd never let that go, lol.

 
Old 07-23-2007, 03:28 AM   #6
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Re: Seeking a diagnosis? Going to the rheumie?

Hi, "Silly Girl". I'm glad you re-emerged, but I'm sorry about the reasons. Good luck with your August rheumatology appt. Make sure you get a copy of your bloodwork, for your personal files (can never hurt to keep a file).

I hope you get clarity quickly. FYI, ANA is positive in MULTIPLE conditions, and sometimes due to a passing virus or family tendency. So its being positive is a strong "pointer", but not definitive of any one thing. BUT, given the things you listed? It makes sense that your rheumie plans the more specific autoantibody tests. See the "sticky posts" (permanent posts) at the top of the thread list? If you read the one about TEST RESULTS, you'll find a resource listed. Go there, then "drill down" to rheumatology, lupus, & tests. THOSE are the tests that your rheumie will likely have run.

Hang in there & let us know how you're making out, OK? And enjoy that new car! Sincerely, Vee

 
Old 10-18-2007, 09:49 AM   #7
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Re: Seeking a diagnosis? Going to the rheumie?

Here I am again!

I swear, I need to start updating this regularly.

I saw a rheumatologist a few weeks ago and finally received a positive Dx of both Lupus SLE and Sjögren's, which I knew I had coming. Still- while it's good to finally know there is an "answer" as to what has been going on, I was still holding out hope that this was just a freak thing and it'd go away on its own.

Guess not.

The doctor started me on Plaquenil. He said that even though I am small (I am very petite and little), he was still going to stick me on 200mg 2X a day. I started that a few weeks ago.

I also had to start a round of antibiotics for a tooth issue (with Sjögren's, I've already had a lot of teeth issues and most likely will have more!) and the combo of the penicillin and Plaquenil really seemed to do a number on me. I've been off of the antibiotic now for about five days and my stomach is finally getting back to normal. I have been feeling pretty awful though- my fever has been back, I've been sleeping a lot, and having joint pain all up and down my body. I have pain every now and then when taking a deep breath and I just feel so drained.

And I've been losing a lot of hair. Way too much hair- and I didn't have much hair to lose to begin with! Darn my naturally thin hair. The doctor looked at my bald spots (all towards the crown of my head) and said that those are very typical spots to lose hair in with Lupus, and the Plaquenil should help.

I am suspecting this would be a flare (as this feeling has been going on now for about two weeks) but since I am still so new to this, I am unsure. I feel like I have felt so crappy for the past six months- right now is just a "bigger" feeling of crappiness. I feel even more crappy than normal.

The good news is that the doctor said my form of Lupus has not involved my organs in any way and most likely never will. I do not have a severe form of it. He said that what I have now is what I'm going to have, and once the medication kicks in I should feel lots beter.

The bad news is that I have felt so frustrated for the past few months- both as a newlywed and someone who looooves to push herself until it literally hurts. I don't know how to chill out and take it easy. I've always been the picture of health up until now. I don't know how to be "okay" with the fact that I'm not going to always be healthy and have energy. My husband has been great support, but I have immense guilt over the fact that I feel like I am not being a good wife and our first year of marriage shouldn't have been like this!! Sometimes I feel like a shell of my former self. I've been to work maybe 20 hours total in the past 2 weeks, I don't feel up to going out at night, and I spent my birthday last week crying and sleeping. The housework doesn't always get done. And I have been so forgetful lately, which isn't in my nature at all- I'm usually as sharp as a tack. At the age of 26, I should be!

I'm going to have to learn really fast, huh. I know feeling this way isn't good for this condition. It's just hard to get over it.

If anyone has any good coping or support ideas, please let me know. It would be of much help.

 
Old 10-18-2007, 11:27 AM   #8
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Re: Seeking a diagnosis? Going to the rheumie?

SillyGirl, I'm very sorry to hear that you got Dx'es of lupus & Sjogren's. But the good news is that you're now getting treatment & regular check-ups.

I've read in the mainstream lupus literature that Plaquenil can take up to 4 months to reach its full effect.

Stay in touch here, OK? Best wishes, and hoping you start to feel your (youthful!) age again really soon. Sincerely, Vee

 
Old 10-20-2007, 05:07 PM   #9
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Re: Seeking a diagnosis? Going to the rheumie?

Hi Sillygirl
I hope things are going better for you. I'm sorry you have been through so much to get a diagnosis. I was diagnosed a year ago (luckily my Dr. picked right up on my symptoms and did the tests right away). Now I'm a nursing mom and looking for alternative treatments that are safe for my baby. My rheumie is very against anything that isn't a prescription but I don't agree. I don't know if you are interested, but I might be onto something in a health drink I found. It is made from 19 different nutrient dense fruits that give you a natural boost and allow your body to be more healthy. Another person with lupus shared her story with me. She was so bad she couldn't walk or function. She has been taking it for a year and says she would get her monthly case before paying her power bill because it does so much for her. She is in her 50's It is so scary to be so young and be faced with some of the things we face (I'm 29). I hear you on the wife bit. Not only have I felt like a horrible wife, but I'm a mom of a two yr old and a 3 mo old! Sometimes I barely have energy to take care of them. There are days that I feel like the worst mom in the world! Talk about housework not always getting done. I was always on top of things and an athlete and suddenly I found myself feeling many of the things you have and some different ones. My fingers and wrists get so sore and stiff I can't even pick my baby up. I drop everything (it's embarrassing!) and can't open jars, wrappers, even doors sometimes. I have only been able to try this drink for 4 days. I didn't notice anything the first couple, but on the third day I realized I wasn't dragging as much. The fourth day my mom mention playing volleyball and I actually WANTED to play. I haven't been able to play for 3 years. 4 days was all I had to test it (a friend gave me some). We just put in our first order so I can start drinking it every day and I'm so excited. I haven't dared go on plaquenil because I'm nursing and I have tried to only take low doses of prednisone when I have to but I have been told by others that they were able to lower their doses after drinking this for awhile. I don't want to push anything on you so let me know if you are interested in knowing more about it. [Sorry everyone! I replied to this post before I read the FAQs. Now I know we aren't supposed to offer any kind of contact off the board. Forgive me!! I was just so excited at having found something that helped me. Is saying what it is advertising? Sorry again!] I just joined this message board and I'm not very internet savvy, but I'm looking forward to meeting and getting to know others who are facing some of the same challenges. As for coping staying in touch with others is a huge help! It is hard to expect less from yourself, but try to focus on the most important things--people! Your husband! Put your energy toward your top priorities first and let other things take care of themselves! I hope some or all of this helps.
Keep in touch and let me know if I can do anything for you.
Lars

Last edited by larsncollin; 10-21-2007 at 04:25 PM.

 
Old 10-22-2007, 10:10 AM   #10
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Re: Seeking a diagnosis? Going to the rheumie?

Quote:
Originally Posted by larsncollin View Post
Hi Sillygirl


Please do share information about his drink, I am interested to hear about it....

I hope things are going better for you. I'm sorry you have been through so much to get a diagnosis. I was diagnosed a year ago (luckily my Dr. picked right up on my symptoms and did the tests right away). Now I'm a nursing mom and looking for alternative treatments that are safe for my baby. My rheumie is very against anything that isn't a prescription but I don't agree. I don't know if you are interested, but I might be onto something in a health drink I found. It is made from 19 different nutrient dense fruits that give you a natural boost and allow your body to be more healthy. Another person with lupus shared her story with me. She was so bad she couldn't walk or function. She has been taking it for a year and says she would get her monthly case before paying her power bill because it does so much for her. She is in her 50's It is so scary to be so young and be faced with some of the things we face (I'm 29). I hear you on the wife bit. Not only have I felt like a horrible wife, but I'm a mom of a two yr old and a 3 mo old! Sometimes I barely have energy to take care of them. There are days that I feel like the worst mom in the world! Talk about housework not always getting done. I was always on top of things and an athlete and suddenly I found myself feeling many of the things you have and some different ones. My fingers and wrists get so sore and stiff I can't even pick my baby up. I drop everything (it's embarrassing!) and can't open jars, wrappers, even doors sometimes. I have only been able to try this drink for 4 days. I didn't notice anything the first couple, but on the third day I realized I wasn't dragging as much. The fourth day my mom mention playing volleyball and I actually WANTED to play. I haven't been able to play for 3 years. 4 days was all I had to test it (a friend gave me some). We just put in our first order so I can start drinking it every day and I'm so excited. I haven't dared go on plaquenil because I'm nursing and I have tried to only take low doses of prednisone when I have to but I have been told by others that they were able to lower their doses after drinking this for awhile. I don't want to push anything on you so let me know if you are interested in knowing more about it. [Sorry everyone! I replied to this post before I read the FAQs. Now I know we aren't supposed to offer any kind of contact off the board. Forgive me!! I was just so excited at having found something that helped me. Is saying what it is advertising? Sorry again!] I just joined this message board and I'm not very internet savvy, but I'm looking forward to meeting and getting to know others who are facing some of the same challenges. As for coping staying in touch with others is a huge help! It is hard to expect less from yourself, but try to focus on the most important things--people! Your husband! Put your energy toward your top priorities first and let other things take care of themselves! I hope some or all of this helps.
Keep in touch and let me know if I can do anything for you.
Lars

 
Old 10-22-2007, 01:10 PM   #11
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Re: Seeking a diagnosis? Going to the rheumie?

Hey Janmar123
I'm brand new on this message board and just read the posting rules yesterday. If I understand them right I'm not allowed to say anything that would be considered advertising. I'm worried that because I am a distributor of this product that it would be considered that way. Do you know? Does anyone else know? I know it is important to abide by the rules on sites like this, but it will be frustrating if I can't even tell others what has helped me. What do you think?
Lars

 
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