View Full Version : Gathering info..when did it really begin?

11-28-2009, 05:54 PM
I am doing some fact finding...can all of you think way back to childhood and remember any symptoms that did not seem like symptoms at all at the time??
growing pains, tendonitis,sore muscles, mono,chicken pox, rheumatic fever,skin issues,allergies..Is it possible you started with overlooked issues long ago? Any input is greatly appreciated. I am very curious and I would love to really do some research that could somehow be put to good use. My sister has an in at NIH...who knows..maybe we could get something going. She helped push for a study for my nieces rare disorder..persistance paid off..they are seeing kids from all over the world at NIH with her syndrome, participants are screened for free.Thanks to all for any info.

11-28-2009, 07:19 PM
Well, I had hepatitis at age 5, in 1961, rheumatoid arthritis at age 10, hemolytic anemia,( hemoglobin was 2.6) at age 24, during my second pregnancy. I had alot of joint pain throughout my life.
My first rheumy thought, I might have had lupus most of my life, I was dx three years ago.


11-28-2009, 07:23 PM
I've thought about this one a lot. I think that I did have some early signs, but I had lousy medical care, since we were on welfare, and my mother was the abusive type.
1. I had those miserable "growing pains" that you spoke of.
2. I had what they called "walking pneumonia" at the time. It happened every year at the same time of year, so now I suspect seasonal allergies, maybe even mild asthma.
3. I could never run or keep up in P.E. My legs would always cramp up or just give out on me. The coaches always chewed me out and gave me failing grades.
4. Balance problems right from the beginning. I never could learn to roller or ice skate - no sense of balance. I couldn't ride a ten-speed, either - I had to use a one speed bike with wide tires, and I still fell often. (Now I have Meniere's disease - was this a clue?)
5. This one really gets me - The rheumy recently told me that I tested positive for psoriasis, so some of my joint pain could be psoriatic arthritis. She found a couple of scaly patches in my scalp, and declared them psoriasis.
I first noticed those in my scalp when I was a young teen. I showed my mother and asked her if I should use some medicated shampoo I had seen advertised, and she erupted, calling me "a dirty, sloppy girl". She accused me of not washing my hair "right". She dragged me to the sink by my hair and washed it for me, digging her nails into my scalp and telling me that I needed to keep cleaning my hair that way. This was the way that she usually dealt with me, so needless to say, I never mentioned the sores again, even though they got worse and often extended behind my ears and down my neck.
After Jeff and I married, I started using his Denorex whenever I noticed the sores, so I've kept them under control and never gave them a second thought until my rheumy went looking for them.
It's kind of a relief to know that there really was a medical reason for those darned things.
6. I came back and added this one. I've been diagnosed with Sjogren's and I think that there were signs of it when I was a kid. I always had dry, gritty eyes - as long as I can remember. Also, I could never cry. No matter how upset or sad I was, I simply couldn't produce tears - still can't to this day. This was something else that angered my mother. She thought that I was some kind of hard-hearted demon-child because I didn't cry at funerals. Sometimes I think that she would scream, swear and hit me just to try to get me to cry. I would have dry, heaving sobs, but never tears. Could this have been Sjogren's all along?

I hope that this info helps to get you started.
Here's another thing that I know we've talked about on here before - many of us have noticed AI issues throughout our families. For example, I'm sure that my mother and my aunt had them - just not diagnosed as such. They had rashes, RA, hoarse voices, and late in life, Alzheimer's. The familial connections are something that I would really like to see studied.
Good luck with this one!

11-29-2009, 11:33 AM
Wow, that's wonderful what your sister got accomplished Andrea!

I've been wondering how far this goes back too...ever since Bonita brought up the post about endometriosis.

I had a lot of cases of tonsillitis and ear aches as a 9 year old that ending in me having tonsils, adenoids removed, and ear tubes put in. Seems like that should have happened when I started school instead of fourth grade. Most kids catch everything and are sick the most when they start school, but I was pretty healthy those first two years or so.

I have always had to battle rashes. Sometimes it was just poison oak, but other times I had gone no where near it. One time they sent me home from school with supposed german measles but the rash was gone the next day.

I had a lot of aches and pains which were chalked up to growing pains, but I didn't grow very tall or fast either. I'm the runt of the family.

I've had bowel troubles as far back as I can remember. I had remission from it off and on in life, but it's gotten worse with age. I've heard recollections of when I was a baby with bowel trouble.

I've had female issues ever since I "officially" became a woman at age 15. Had no clue it was endo/adeno until I was an adult.

I had a lot of headaches as a teen, a lot of tummy trouble, and a bad case of bronchitis for two months. I had kidney stones at 17, but I think it was more than kidney stones...it was a lot more painful than the stones I've had since then.

I've had walking pneumonia too...ugh, that was a gruesome experience. ((((hugs)))) Marla. I used to get scaly patches on my scalp too. I haven't had that in years. I get sores now from sun exposure and that's about it. I've been accused of crying crocodile tears...just because I couldn't sob out of my eyes even though everything else showed I was crying. Oh Marla...what you went through sweetie... I'm so sorry you had a crappy mom.

11-30-2009, 07:57 PM
Ladies..thank you sooo much for the input..I think we had these oddities from a young age. Abba...I had my tonsils out at age 21!!! Marla...you seem to be a great lady..in spite of what you endured!! My mom died in June and she was a great person..when I hear stories like yours..I realize how fortunate I was. She devoted her life to caring for others...was a nurse by trade and stopped to be a mom of 5..along with the "on call" nurse of the neighborhood when we were kids. Went to work when I was in junior high and then took care of her parents one by one with age and illness. I feel so blessed to have had her and she truly was a saint who never had a bad word to say about anyone...I wish we could have cloned her. I try to have her strength when feeling physically/mentally drained. She never complained I feel like such a whiner sometimes..those are some tuff shoes to fill.

11-30-2009, 09:41 PM
Your mom sounds like she was much like my mother-in-law. She raised her four boys, then went back to school herself and became a nurse. She was the head nurse of a coronary critical care unit before she retired. She was a great lady, and I learned a lot from her. She was the "Mom" that I didn't have growing up. When my mother passed away, it was just a duty for me to go take care of her estate. When Jeff's mother passed, it was a trauma for all of us in the family.
I guess that I was very lucky to choose the right guy with the right family for me!

12-02-2009, 06:56 PM
Hi Marla!
I just wanted to write and say you are not alone in the mom thingee... My mom abandoned my brother and I when I was 4 and he was 1, my dad then married the "evil" stepmom.... sounds like your mom. I was blessed beyond measure with a wonderful mom in law, who is more a mom to me then either of the other ones!!
It was such a relief to find that there were moms out there who really did try and put their kids first, and love no matter what...
Bless you,

12-03-2009, 07:56 AM
Abba...I had my tonsils out at age 21!!!

Bless your heart...I hear the older you are with tonsil trouble, the worse the pain is. I'm thinking it wasn't typical tonsillitis but autoimmunity. One doc told me we can't blame everything on AI, but I bet we can blame it for a lot.

I'm so sorry about your Mom.


I'm motherless. I was forced to tell my mom goodbye recently. It's more painful having her in my life than out of it. My mother in law and I used to be close, at the beginning of the marriage, and then I got to know her better, and why my husband hates visiting her...and when I stopped making him visit her, she turned ugly on me.

I had a very wonderful stepdad though. Nurturing, caring, and spent a lot of time with me. He passed away over 6 yrs ago. He made a big difference in my life and I miss him very much.

God fills in the holes.

12-03-2009, 12:31 PM
Abba..yes it was horribly painful surg for that age....but I had no more infections after that so it was worth it. Thanks for the condolences..i miss her. she was truly a gift and when I hear the other "mom" stories..my heart breaks. I am a mom ..I can't even fathom being treated like that or doing that to my children. It amazes me how some people are able to reproduce and are horrible people..and you see these wonderful childless people who would give their left arm to have the gift of a child. Life is a mystery. I am having a lot of pain this week and I just try to draw strength from how my mom was...I think of how she was small..but mighty and NEVER complained..about anything..if she was ever in pain..you never knew it. That is a tough act to follow!. I hope more people respond and let me know of the early symptoms!!I do believe I started in childhood as well.

12-03-2009, 03:18 PM
Is it still ok to put my little input in?

I had my first flare from 7/8 i had a mouth full of ulcers, then i remember being sick every summer (fluey), hitting my teens i had terrible "growing pains" in my legs soo severre i would cry every night, i always had probs with my tonsils being inflammed etc, but never had them out, then when i was 17 i had my first DVT, and a number of years went by til i was 27 had my second DVT and 6 months after that i got diagnosed with lupus.

Thanx for letting me input


12-07-2009, 12:52 PM
I am doing some fact finding...can all of you think way back to childhood and remember any symptoms that did not seem like symptoms at all at the time??
growing pains, tendonitis,sore muscles, mono,chicken pox, rheumatic fever,skin issues,allergies..Is it possible you started with overlooked issues long ago? Any input is greatly appreciated. I am very curious and I would love to really do some research that could somehow be put to good use. My sister has an in at NIH...who knows..maybe we could get something going. She helped push for a study for my nieces rare disorder..persistance paid off..they are seeing kids from all over the world at NIH with her syndrome, participants are screened for free.Thanks to all for any info.

Hello. I am new here. I found your post interesting as I have often wondered the same thing. I started looking back in my past records to see if there were any signs and started jotting them down before. So here goes.

When I was very small I was hospitalized for croup. I had breathing difficulties and rashes that were attributed to allergies through out childhood. I was allergic to everything.

By age 12 I was hospitalized again with (agute???) psoriasis. I am not sure of the spelling or if that is right diagnosis.. it sounds like that. This is where 90% of my body was covered and I looked like a dragon. My skin was so covered with psoriasis that I all I could wear was this cheese cloth type tube clothing they made for me the whole 7 weeks I was there. One of my sisters was also hospitalized for it too. They assumed it was brought on by a strep throat infection we both had at the time. She received ultra violet rays to treat hers. I did only once. The lights caused it to become inflamed and even worse. Eventually different meds and creams worked to clear it up.. but it took forever or so it felt.

From that point on I have always had patches scattered around my body. At this time my hips, elbows, upper arms, scalp and down the middle of my back. It has never really gone away all these years but gets better and worse.

1987 - bad car accident that caused post concussive disorder?? white outs randomly happened

1993 - terrible knee pain. excruciating knee pain that resulted in rehab. this never went away but seemed to get milder. Probably because I got used to it too.

1994 - Really bad bronchitis that caused it hard for me to breath. I had to use an asthma inhaler. This was during the pregnancy of my first child and the beginning of an abusive marriage that lasted until 2007.

1998 pain in my hips and lower back now.. we assumed because I had just carried twins for 7.5 months and had been on bed rest in the hospital for the five weeks prior. We waited it out to see if it would go away on its own once my whole centre of gravity came back again. It didn't go away and almost two years later - a scan showed degenerative disc disease.

2004 - was the worst year besides this one. I became extremely ill from pain throughout my entire body. I had a hard time walking on some days. Pain in my right side at the back burned like nothing I had ever felt before. Ultrasound showed *(hard tumor) on outside of my right kidney. I was told it was nothing to worry about and that couldn't have been what was causing the pain as they had found stones that I just had to take a med for and they would pass. That pain did pass though and only occasional burning in my back there now.. lmao after 5 years.

I was also suffering pain and swelling of my hands, elbows, hips, knees, back and feet. This is when my doc looked at my med history and what he had been dealing with did blood work and referred me to a ruemologist for SLE

2009 - This year has been the absolute worst. I have been having memory problems since 2005 but now I am forgetting how to do simple habitual things. It sucks. I have had several days and many more restless nights due to pain EVERYWHERE. Parts of me that never had pain have succumbed.

I have had an irritating spontaneous cough in what seems like forever, (at least a year and a half) even when no one around me has a cold and all through out the year. I don't even think I have a cold.. just this annoying chokey feeling that gets me coughing.

I have had two of my teeth break this year and I didn't even have cavities. (My kids always point out to me that I have the nicest white smile - I brush and floss a lot as I battled alot of cavities filled in my youth and a front tooth fixed due to my ex husbands temper in 1999.

I don't just have pain in my joints now but everywhere and not always at the same time. I have been so tired these past few months I think mostly due to the nagging pains I have all night that keep waking me.

I have had periods of muscle like spasms that wake me and the love of my life. (By the way I finally found out what it is like to be with a caring and loving person. He is amazing and we got engaged last year :D) It feels like the shiver you get when you are cold but it is so so much stronger and covers whole body. I am somewhat alert and don't feel pain during but can't stop. Maybe adrenalin?? During the worst and longest one he said I was shaking so badly that he thought I was having a sizer and the whole time I was telling him it will pass please don't call 911. These have been happening since about 2007 just more frequent now. That big one only lasted just a few minutes but seems like an eternity until I could pass out from exhaustion. But I sure sleep better after.

Pain has gotten so much worse and isn't just happening when I rest anymore but all through out the day. I can't walk my dog anymore which has always been a favourite time. I am struggling at work and my job is very physically easy. I have sharper pains in the areas of my body I use for different tasks. The constant pain is dull in comparasin. I am physically exhausted all the time.. all the time and everything small seems to drain me now. I have days when I can't lift my arms to brush my hair because the pain just makes it seem not worth it. Those are my messy bun days. Mind you I endure and still do everything I need to do but it just takes me so much longer..

My new specialist now thinks that it isn't lupus as ANA tests are fine. There was this H27?? one that he did that says arthritic. My calcium levels are high and I have developed several holes in my bones that show on a new bone scan they did. The lumps and bumps I am getting everywhere are some kind of calcium deposits.

Pain was so severe that I ended up going to an emergency room (a few weeks ago) and they took xrays of my shoulder and collar bone as the whole area was swollen and really hot. I dread going to the hospital because the emerg is always so full of germs and I have avoided at all costs for the past 8 years. The pain was that bad and nothing I took or did would ease it any. I thought I broke something and couldn't figure out how. It just came on suddenly. New xray were taken and the tech called in the doc. They found a white mass on my collar bone at least it wasn't a matching hole like the other side which was what I thought they were talking about at first until they showed me. That could be an old injury healed as I had many during my marriage. They took blood and did a test on my heart with little sticky things in various parts of my body. I was given a shot and a new temp pain script that seemed not to work either. I never heard back about blood work or heart test so I assume all was good.

I went to my reumy a couple days later as it didn't get better. He did cortizone in my shoulder and the swelling has gone down some prob due to meloxicam that I am now taking.
We are going to be starting a new treatment in Jan methotrexate??? I am very hopeful as he said it works well for patients with arthritis.

Today - the pain is still present no matter what meds I take. I am physically and mentally drained. I just really hurt and pay for it every minute.