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I'm new, have a few questions.

Posted by on May. 24, 2009 at 2:28 PM
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I know none of you are doctors, but if you're in this group, you have Lupus. I haven't been diagnosed yet, simply because I cannot find a doctor who will run the darn tests for me. I wanted to tell you all my symptoms and see if it sounds like Lupus to you.

I've had chronic pain since I was 16 years old. I went to a chiropractor first and he couldn't do anything to me (touch me) because I was in SO much pain from just touching certain places on my body. He thought I had Fibromyalgia and sent me to a neurologist first. The neurologist diagnosed me with fibro and allodynia (apparently it's a disease where the nerve endings are hypersensitive and pain is caused when certain pressure points are touched) and sent me to a rhemuatologist. At the time I was pregnant with my son, so he couldn't do anything for me and sent me on my way. Now here I am 5 years later and have a lot more symptoms than I ever had:

- I have a constant rash that keeps coming back. It's on my fingers (sometimes it is on my arms and legs) and sometimes it turns into blisters. Most of the time it's dry red patches and it hurts so bad. I've gone to a dermatologist who said it was eczema but it's not. I've had 4 different prescription creams and they never helped. I'm learning to deal with it. I started getting the rash after my 1st child.
- I'm spilling protein in my urine. I had a complete blood work up a few months ago and it said that my microalbumin was 49.1 My microalbumin/creatinine ratio is 237. I also did a 24 urine test and that came back with protein in my urine as well (I had preeclampsia with both of my children)
- I still have high BP from the preeclampsia from my DD (she's 8 months old).
-I'm ALWAYS cold. When I lived in FL I would wear a jacket all year round. Now I live in NC and it's awful in the winter time.
-I've got chronic pain all of the time in all of my joints and muscles. Sometimes it feels like they're on fire and sometimes they feel cold as ice. My body just feels so stiff all of the time.
-I have night sweats constantly. I have to change my clothes and normally just wear a tank top and underwear to bed.
-I've got onset hypothyroidism and diabetes type 2. (My thyroid is 4.22 and my fasting glucose levels were over 140.)
-I'm tired ALL of the time. Everyone keeps telling me it's because I have an 8 month old DD and a 2 year old DS but I've been tired since I was 16 and didn't have children then. I'm always having to lay down. Even if I get 8 hours of sleep I'm still tired. Then again, I never get consecutive hours of sleep.
-I've had anxiety and depression for years. I've taken medications for them both and none help.
-Chronic dry eyes. I have these thin noodle-like straws in my tear ducts to make me produce more tears because my eyes are always so dry.
-Chest pain. It always feels like an elephant is sitting on my chest. It burns when I breathe in deeply sometimes.
-I always feel like I'm in a fog and have memory loss. People say it's 'fibro fog' but I don't know.

Sorry this is so long, but I'm just wondering HOW you get a doctor to test you for things? I also think I have Sjogrens but because it's rare, no doctor wants to test me. The last doctor I had (before I stopped going) asked if I had ever seen a psychaitrist because depression meets a lot of these "symptoms" I have. How rude and insulting. I'm NOT crazy. There IS something wrong with me.

How did you guys go about getting tested? I mean, I have insurance and I'm willing to pay for the damn blood tests, how do you convience a doctor?



                   

by on May. 24, 2009 at 2:28 PM
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chairhead28
by on May. 24, 2009 at 3:16 PM

Bump... 


        




 




                      

sarasotasandi
by Member on May. 25, 2009 at 3:15 PM

OK - Chronic pain since age 16 and a dx of fibromyalgia may be what is holding your drs back from testing further.  They are hearing - "I hurt all the time" and they are blocking everything else.  You need to have a sit down to discuss your symptoms and history, the whole thing.  Explain that you are not just looking for a pill or to treat one symptom, you want to understand what is going on so you will be better able to help keep yourself healthy.

The skin rash doesn't sound like the typical lupus rash - it sounds more like eczema or psoriasis - but it DOES sound like an auto-immune problem.

I'm not sure about the protein in the urine, lots of other diseases also affect kidney function.  If they tested for protein in the urine, I don't understand why they wouldn't want to go further and test for RA, Lupus and some of the other auto-immunes.

Being cold is often seen in people with hypo-thryoid.  Many thyroid conditions are also auto-immune in nature.

With a fasting glucose of 140, you sound more like a type 1 diabetic.  Diabetes is another auto-immune disease.  Testing can determine wether you are type 1 or type 2.  Diabetes can make you very tired.  Without the insulin to allow your body to use the glucose in your system, you have to burn fat.  Most people with type 1 diabetes tend to be very slender and lose weight without trying before being properly diagnosed.

The night sweats could be associated with a lot of things - right now, just another puzzle piece that doesn't quite fit, but it belongs in the pile.

Chronic dry eyes - definitely a symptom of Sjogrens (another auto-immune disease - do you see where I'm going with this theme?).  Since you have had treatment for the dry eyes, obviously someone took you seriously about the symptoms - again, I don't understand why you were not tested further.  There are tests for Sjogrens.

Chest pain and "foggy brain" are just two more symptoms that are often associated with lupus. 

Write down a list of your symptoms on a piece of paper.  Maybe make a time-line of when the symptoms first appeared, or write what tests if any were done and what treatment you were given for each.  Take this list to your doctor.  Either - ask for a referral to a rheumatologist and an endocrinologist based on the symptoms, or ask for a complete blood work up to test for some possible causes for these symptoms, including tests for lupus, rheumatoid arthritis, sjogren's, thyroid disease and diabetes.  If any of the tests are positive or indicate an autoimmune disease, then you must INSIST on a referral to a rheumatologist.  If you have a fasting glucose of 140, you definitely need to see an endocrinologist as well.  Find a larger diabetes clinic. 

If the doctor continues to dismiss your symptoms as depression related, you could agree to see a therapist, but insist on the tests and/or referrals to specialists.  If the doctor refuses, then it is definitely time to find another doctor. 

 

Good luck!

momof3inCT
by Member on May. 25, 2009 at 3:59 PM

WOW you poor thing IM SO SORRY to hear all this.

Well My advice is to keep changing drs till someone diagnoisis you correctly! I think it sounds like Lupus or some other auto immune disease and you would benefit from treatments. so KEEP PUSHING the drs b/c you know your body best! As for the drs dismissing it as you have a young child yeah THAT HAPPENED to me too for the past 6 years! I have always had rashes and leg pains, passing out episodes etc...but for years it was passed off as vertigo, then as a weak immune system (for having so many colds), then dieting, then having young children the drs said ofcourse your tired 3 kids under 6 yrs old, finally I went for a physical and my liver functions were whacky so they agreed something was wrong. so the POINT of my story is dont give up! Have they tested you for ANA? if not I would insist on that test and there are certain blood markers they can test for that are indicative for Lupus. The drs are still not 100% I have lupus but they are 95% sure originally they said either Lupus or Syjorens (Sp?) but there are sooooooooooo MANY auto immune disease that have overlapping symtpoms! So GO FIND A DR who listens to you and that will make all the difference in the WORLD! Im trying to do the same right now! I didnt know that there are Rheumatologist that SPECIALIZE in Lupus!! IM TRYING to find one right now even if I have to drive an hour to see them I WILL!

chairhead28
by on May. 25, 2009 at 4:05 PM

Thank you guys SO much. My MIL actually asked if I had ever been tested for Sjogren's because of the dry eyes and my saliva glands are always swollen (they have been since I was YOUNG, like maybe 8 or 9...I used to freak out and tell my mom I had cancer because they felt so huge and she'd tell me I was a hypocondriac.. then my father got follicular lyphoma and it made me freak out more. I also heard that children that have parents with blood cancers are more likely to get Sjogren's as well...) and I talked to one of my newest doctors and she told me I was crazy. But, I'm calling this new doctor tomorrow and see what's up. Again, thank you so much for the information. 



                   

momof3inCT
by Member on May. 26, 2009 at 2:35 PM

GOOD luck with the new drs keep us posted!

doll2660
by on May. 26, 2009 at 2:45 PM
Sorry, I have Lupus and your symptoms are very different then mine. Now I know all symptoms are different but lupus is in the joints and not much muscle involvement. It does sound like Fibro and diabetes. You need a ANA and a DNA test. Those will give you a good idea. I don't see a sed rate listed anywhere. You need to call a rheumatologist and get the required tests. They are the only doctors who really know the nature of the beast. It also hard to know if you just had a baby. levels are off. Just my opinion but some symptoms match but others are looking like something different.
doll2660
by on May. 26, 2009 at 2:47 PM
Quoting momof3inCT:

WOW you poor thing IM SO SORRY to hear all this.


Well My advice is to keep changing drs till someone diagnoisis you correctly! I think it sounds like Lupus or some other auto immune disease and you would benefit from treatments. so KEEP PUSHING the drs b/c you know your body best! As for the drs dismissing it as you have a young child yeah THAT HAPPENED to me too for the past 6 years! I have always had rashes and leg pains, passing out episodes etc...but for years it was passed off as vertigo, then as a weak immune system (for having so many colds), then dieting, then having young children the drs said ofcourse your tired 3 kids under 6 yrs old, finally I went for a physical and my liver functions were whacky so they agreed something was wrong. so the POINT of my story is dont give up! Have they tested you for ANA? if not I would insist on that test and there are certain blood markers they can test for that are indicative for Lupus. The drs are still not 100% I have lupus but they are 95% sure originally they said either Lupus or Syjorens (Sp?) but there are sooooooooooo MANY auto immune disease that have overlapping symtpoms! So GO FIND A DR who listens to you and that will make all the difference in the WORLD! Im trying to do the same right now! I didnt know that there are Rheumatologist that SPECIALIZE in Lupus!! IM TRYING to find one right now even if I have to drive an hour to see them I WILL!




The Mayo Clinic in Rochester Minnesota. I was dxs there in 2007 after a long battle.
jblueeyes228
by on May. 31, 2009 at 2:44 AM


Quoting doll2660:

Sorry, I have Lupus and your symptoms are very different then mine. Now I know all symptoms are different but lupus is in the joints and not much muscle involvement. It does sound like Fibro and diabetes. You need a ANA and a DNA test. Those will give you a good idea. I don't see a sed rate listed anywhere. You need to call a rheumatologist and get the required tests. They are the only doctors who really know the nature of the beast. It also hard to know if you just had a baby. levels are off. Just my opinion but some symptoms match but others are looking like something different.  Wow, if you have Lupus and ALL you have is joint pain then you should consider yourself blessed. I get muscle and joint pain and everything else that poor woman has. I was gonna tell her that she not only has Lupus but she has a VERY BAD case of it. I've been on Chemo three different times for it and the sickness just from that made me want to die. Depression is a common symptom of Lupus as is everything else you said honey. I know how you feel, I would go to the ER and tell them how much pain your in. Scream if you have to . No one should be in that much pain.


chairhead28
by on May. 31, 2009 at 11:22 AM


Quoting jblueeyes228:

 

Quoting doll2660:

Sorry, I have Lupus and your symptoms are very different then mine. Now I know all symptoms are different but lupus is in the joints and not much muscle involvement. It does sound like Fibro and diabetes. You need a ANA and a DNA test. Those will give you a good idea. I don't see a sed rate listed anywhere. You need to call a rheumatologist and get the required tests. They are the only doctors who really know the nature of the beast. It also hard to know if you just had a baby. levels are off. Just my opinion but some symptoms match but others are looking like something different.  Wow, if you have Lupus and ALL you have is joint pain then you should consider yourself blessed. I get muscle and joint pain and everything else that poor woman has. I was gonna tell her that she not only has Lupus but she has a VERY BAD case of it. I've been on Chemo three different times for it and the sickness just from that made me want to die. Depression is a common symptom of Lupus as is everything else you said honey. I know how you feel, I would go to the ER and tell them how much pain your in. Scream if you have to . No one should be in that much pain.

 

Thank you. I'm calling someone tomorrow because lately I've also had two new symptoms. Most of the time I have horrible constipation. Like, I have a bowl movement maybe twice/three times a month if I'm lucky. Since the beginning of May I've had diareah at least 4 times a DAY and I've also been throwing up every so often. I'm not pregnant, I took like 5 tests and I already got my period and it was normal, so it can't be that. I don't know if those are signs of Lupus either, but this stuff can't be right. I've been so sick and I haven't been able to leave my house in fear of not finding a bathroom soon enough. It's embarrassing though, so I haven't told anyone. I'm 21, I shouldn't feel like this. And I do, and no one is listening. I keep watching shows like Mystery Diagnosis to see if anyone else has symptoms like me. It seems though, since I'm young and I go to a doctor with diagnoses they just say, "you can google anything and find that you have all of those symptoms" or "are you SURE it's not just in your head? Are you SURE you really feel as bad as you do?" "Are you SURE you're not just depressed?" OF COURSE I'm depressed, I'm 21 and I can't do things I love because I know how much pain I'll be in after I do simple things like take a little hike (we live in the blue ridge mountains, so it's killing me not to go on the parkway and take hikes and take pictures, I'm a photographer) or give my son a bath. He LOVES baths and my husband has to give them to him because I can't bend over the tub for 10 minutes because I hurt so much. I can't hold my son for too long because my muscles start shaking on the inside and they just give out. I hate waking up because I wake up and feel like an elephant has slept on my chest all night long and it hurts to breathe and move. I wake up constantly with headaches and I can't just lay in bed because I have a two year old and an eight month old (who's still EBF).

Sorry, that turned into a little vent, but I'm just so sick of all of this. I've been dealing with it for over 6 years. I'm only 21. I just never want to get older because the pain's just gotten worse over the years...



                   

casie1124
by New Member on Jun. 6, 2009 at 8:32 PM


Quoting doll2660:

Sorry, I have Lupus and your symptoms are very different then mine. Now I know all symptoms are different but lupus is in the joints and not much muscle involvement. It does sound like Fibro and diabetes. You need a ANA and a DNA test. Those will give you a good idea. I don't see a sed rate listed anywhere. You need to call a rheumatologist and get the required tests. They are the only doctors who really know the nature of the beast. It also hard to know if you just had a baby. levels are off. Just my opinion but some symptoms match but others are looking like something different.

I was just recently diagnosed with lupus, and I'm surprised you say muscle pain doesn't have much involvment. That was one of my first symptoms horrible muscle spasms. I have to take a muscle relaxer every night just so I don't wake up. I figured lupus usually starting in connective tissues to be the cause. I sure wish I only had joint pain.

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