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denise b
10-14-2011, 09:24 PM
I'm interested in hearing about others' experience with the progression from the first symptoms. Was it gradual or rapid? How long before you suspected lupus, and how long until diagnosis? How long is it possible to have very mild symptoms (10 years?)

I think I'm still a long way away from a diagnosis. My recent ana test was 1:1280 speckled, ssa/ro value of 8. I have joint pain - pretty mild - in both shoulders, hands and wrists, very mild pain in feet and ankles, and a lot of fatigue for about 8 months. Often the pain is just an annoying soreness, but some days it's bad enough to limit my movement. I've had low energy all my life, chalked up to depression, but the fatigue I've been feeling this year is different in that fatigue from depression improves when I do more while this gets worse the more I do. It takes very little to exhaust me and when exhausted I sleep 10+ hours a night. I have also lost 15 pounds since March without trying to. I'm taking Relafen and to return to the rheumy in January. He still thinks my test results might improve and that I might never develop any disease.

He calls my joint pain arthralgia because he sees no signs of arthritis, but at the same time he tells me that it is osteoarthritis. I don't believe this. It's mostly symmetrical and equally bad on both sides; it appeared in many joints basically overnight; I had it in one knee a year ago and x-rays showed no arthritis (this pain has since gone away); I've never had any problems with my shoulders and no of know reason why I would, yet suddenly both shoulders are aching and keeping me awake at night.

One thing I'm wondering about is that the sore joints in my hands first started more than 10 years. Out of the blue one morning every joint in all 10 fingers was sore. Around the same time a had a bad bout of alopecia. It was diagnosed as the beginning of osteoarthritis, but even then I was skeptical because of the suddenness and the number of joints. But it was never more than a very mild soreness that didn't need treatment and I basically ignored it all these years. Is it possible to have a very mild autoimmune response for so long without it ever getting worse?

Does any of this match anyone else' experience?

Thanks for whatever thoughts you may have.

tgal
10-14-2011, 09:27 PM
I'm interested in hearing about others' experience with the progression from the first symptoms. Was it gradual or rapid? How long before you suspected lupus, and how long until diagnosis? How long is it possible to have very mild symptoms (10 years?)

I think I'm still a long way away from a diagnosis. My recent ana test was 1:1280 speckled, ssa/ro value of 8. I have joint pain - pretty mild - in both shoulders, hands and wrists, very mild pain in feet and ankles, and a lot of fatigue for about 8 months. Often the pain is just an annoying soreness, but some days it's bad enough to limit my movement. I've had low energy all my life, chalked up to depression, but the fatigue I've been feeling this year is different in that fatigue from depression improves when I do more while this gets worse the more I do. It takes very little to exhaust me and when exhausted I sleep 10+ hours a night. I have also lost 15 pounds since March without trying to. I'm taking Relafen and to return to the rheumy in January. He still thinks my test results might improve and that I might never develop any disease.

He calls my joint pain arthralgia because he sees no signs of arthritis, but at the same time he tells me that it is osteoarthritis. I don't believe this. It's mostly symmetrical and equally bad on both sides; it appeared in many joints basically overnight; I had it in one knee a year ago and x-rays showed no arthritis (this pain has since gone away); I've never had any problems with my shoulders and no of know reason why I would, yet suddenly both shoulders are aching and keeping me awake at night.

One thing I'm wondering about is that the sore joints in my hands first started more than 10 years. Out of the blue one morning every joint in all 10 fingers was sore. Around the same time a had a bad bout of alopecia. It was diagnosed as the beginning of osteoarthritis, but even then I was skeptical because of the suddenness and the number of joints. But it was never more than a very mild soreness that didn't need treatment and I basically ignored it all these years. Is it possible to have a very mild autoimmune response for so long without it ever getting worse?

Does any of this match anyone else' experience?

Thanks for whatever thoughts you may have.

First let me welcome you to the WHL family! We are really glad that you are here!

For many of us, looking back, it was years, and sometimes decades, from initial symptoms to diagnosis. Heck, even from the point we became very ill it was months or years before we were given a firm diagnosis. That is why having lupus is not a requirement to be here. If you have Lupus, any other AI disease or are just looking for answers we are here. This is a wonderful group or supportive people . I think you are going to like it here

(and yes, most of our symptoms we were able to ignore for a very, very long time)

Nonna
10-15-2011, 02:04 AM
Most of my life has been spent in pain, so my pain tolerance levels are very high. I never heard of lupus let alone suspect I had it. My doctor saw arthritis so she sent me to rheumy. A month later I had my diagnosis. That was 2 years ago. I was 61 then. Can you imagine the relief I felt.

So what I'm trying to say is sometimes it takes a long time. 40-50 years to be diagnosed. Sometimes not, it just takes the right docs.

Hugs and good thoughts

steve.b
10-15-2011, 04:42 AM
firstly welcome !

in answer to your question, i had problems from the age of about 5.
i am now 49, and was diagnosed at 47.

i had brain scans and several other tests at 5 because people could not explain some of my problems.
i even spent 12 years in the military, and they could not explain some of my medical abnomilies.

Manderson
10-15-2011, 05:49 AM
Oddly enough I had hand involvement as a first symptom as well. Of course I have been to rheum but bloodwork came back a-ok, so there's obviously nothing wrong with me <rolling eyes>. but I digress......two summers ago I had a huge bout of psoriasis and then my hands started feeling heavy and disconnected. Fingers felt swollen but they weren't KWIM? It was a hugely emotionally upsetting time with dad being so sick and dying. Then the itching and rashes on the hands and arms started. Last spring tho started the bilateral joint pain and that DID come on suddenly. All summer I had it - some days okay, some very painful like you. I went to PCP who refered me to rheum (I had +ANA two years ago but was never refered out). I finally get in to see specialist in early Aug. My elbows are on fire and she can see the swelling so off I go down the hall for blood and x-ray. All came back perfectly fine. And the really strange part is that all pain disappeared the day after my appt. I had joint pain from toes to elbows and it was all gone. I've had a nice 2 months but it's creeping back here and there. Only thing I can think of is weather-related. The day of my appt was the day the heat and humidity broke in Chicago and never came back, except for a day here and there. I'm really flummoxed. The doc I work for believes it's psoriatic arthritis since it all began with a large flare and I have psoriasis and PA on both sides of the family.

For right now I'm going to chill about this through the hols and then dig deeper. I am in a HMO so I can only be refered out to the same group of rheumatologists. So I'm not sure what my next step is other than to see my PCP again and try to devise a plan.

Holy wall of text! That went on longer than you probably wanted to see!

running girl
10-15-2011, 06:14 AM
Welcome Denise!

I have a similar story and my symptoms have been developing slowly. Mine started a year ago with a hive-like rash in various areas of my body. The rash was symmetrical developing on both sides of my body. My dermatologist couldn't figure it out. Then I got Raynaud's so he ordered some blood work and my Ana was positive (1:320 speckled). He sent me to a rheumy who felt strongly I have lupus which is still in the emerging stage.

Aside from watching House (which frankly scared the crap out of me) I had no idea was Lupus was. I did some reading and realized I had more symptoms (mouth sores, hair loss, chest pain). She started me on Plaquenil.

Since that time my fingers, hands and wrists have started to ache. Mostly when I have to hold something tight, like the steering wheel. But like you, nothing unbearable. Just a minor annoyance.

Also, the fatigue has developed. This is something I hate the most. I love to be active and busy. A year ago I was running a lot. Now if I try to run I pay such a high price. Last week I felt great, so I went to the gym and ran for half an hour and swam for a bit and the next day I could NOT get out of bed. I think I slept 12 hours and when I got up I was useless. I had zero strength. This lasted two days.

I still wonder if I really have Lupus. My doctor just says, "wait for the symptoms, you'll see". I guess she's right, they are developing as she predicted. Now I guess we just wait to see how involved it will be for me. I hope it doesn't progress any further.

Anyway, sorry to go on about me. I'm glad you found us. This group is truly awesome!
Brenda

howsabout
10-15-2011, 10:24 AM
My first actual lupus symptom that triggered the testing was just 8 months ago. 6 months after my first symptom the impossible fatigue, Raynaud's &muscle fatigue started. 7 months after the first one the painful/burning joints started along with a mouth sore here and there. Just recently I've had problems in fluorescent lighting and the sun. I tend to get itchy palms, itchy other places, a burning face and feel crumby.
However, my psychiatrist called it to my attention that I've been struggling with fatigue for 3 or so years that she was trying to (unsuccessfully) treat with antidepressants. Also, right after I had my last son 3 years ago I got a strange sciatica type pain that the physical therapist determined was an inflamed sciatic joint. A steroid patch took care of (in 2 days) what weeks of PT and vicodin couldn't. It never even crossed my mind that I could actually be sick. I was just always told I was lazy.
From the first labs until now it's been a short while to get so many new symptoms. That makes me nervous to a degree. But looking back I was probably sick alot longer, closer to 3 years before they even started entertaining the lupus idea. I'm still not officially diagnosed yet but diagnosed instead as have undifferentiated connective tissue disease.

running girl
10-15-2011, 12:07 PM
This has been a great thread for me. Thanks to all. I was always curious about how other people's symptoms developed.

I also have had the "looking back" realization that this has probably been with me for a while.

It's so good to know I'm not alone. Thanks WHL!

By the way, today is a crappy cold, windy, rainy day and is probably the worst day I've had with joint pain. Is weather a common trigger for others too?

denise b
10-15-2011, 08:43 PM
Thank you for your responses. I'm realizing that I'm going to learn a lot more about this by talking to patients than by talking to doctors!

denise b
10-15-2011, 08:55 PM
You're not too long at all! I really want to hear about other people's experiences. Such a strange bunch of diseases, so many unique manifestations. I'm seeing how much this can mess with people's heads until it gets sorted out.

I've had the sporadic mysterious itching on hands and arms as well. I scratched my forearms bloody quite a few times. I thought it was some sort of tiny insect that I never saw and that never bit anyone but me.

lupyme
10-18-2011, 11:24 AM
It took about 15 years to for me to be diagnosed. For some time the docs thought I had "unusually bad arthritis for such a young woman". It took getting pleurisy to push them into motion.