any1 here with Lupus, Sjogren's, or Raynaud's?

steph9700

steph9700

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I was diagnosed with Systemic Lupus, Sjogren's Syndrome, and Raynaud's Phenomenon. Does any one else here have any of these?
 
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Wow! I have heard of lupus.

But not of the other two.

I'm sorry to hear of this. I will definitely keep you in my thoughts girl!
 
yeah i hear about lupus not good
but those 2 i never hear of that interesting
 
Gee, that's not good. No, I don't have these disease. I would recommend you to become a vegetarian slowly to see how much your immune system improves.

- Study in foot bath treatment on Google something called Q2.

- a QXCI treatment

- Research pros and cons on foods.

- Must avoid high fruit corn syrup

- Do NOT eat artificial sweeteners and Sucralose because of bad aspartame.

- eat right type of healthy foods.

- There are a lot of things that you need to learn from vegetarian people's suggestions even you have not yet become a vegetarian.

- Write down on your notes to track your foods to narrow your problem (It takes a long time to reveal your problem like one to three months. Maybe two or three weeks if lucky.)

- Eat Yogurt everyday or four times a week. Make sure that they are regular yougart without non-fat and low-fat. Not-fat and low-fat contain aspartame, and they do make people fat if they eat the diet foods. All diet food do contain the aspartame even it is not on the ingredient.

- Drinking a Coke is big NO.
 
There is no cure for any of them.
Lupus and Sjogren's disease are both auto immune meaning my body produces extra stuff to fight my own body parts. My immune system is too strong so they are talking about putting me on stuff like they make organ donor recipients take so that their bodies won't reject the new organ. If that doesn't work they are saying maybe some type of chemotherapy like cancer patients get but that is worst case. Raynaud's is a deal where the capillaries in your fingers and toes and nose stop causing them to go white then purple looking then bright red depending on the flow of blood. here are some links for definitions to each one:

LUPUS
LUPUS FOUNDATION OF AMERICA

Sjögren's syndrome
Sjögren's Syndrome Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

Raynaud's Phenomenon
Raynaud's Phenomenon
 
I don't do diet stuff anyway, I don't drink anything with caffeine or carbonated, and Splenda is a good sweetener, it does not contain any aspartame at all. Also there is a new thing coming out that is made from the Stevia plant grown in Hawaii that tastes like sugar and is real and natural but doesn't mess with you like real sugar does with diabetics or corn syrup. The name brands that we can get here in Birmingham are Truvia and Activia. there is also a brand called "In The Raw" that carries the Stevia. They are all kind of on the expensive side but that is because it is new and really good for you. The healthier you try to be in this country the more expensive it is for you to buy it.
 
steph9700 said:
I was diagnosed with Systemic Lupus, Sjogren's Syndrome, and Raynaud's Phenomenon. Does any one else here have any of these?
Click to expand...

Was this all diagnosed by one doctor at once??

The reason I ask is... If it was done by one Dr. Or if you went to several and gotten different opinions by separate M.D.s.

That is a whole a lot. Of combination of illnesses.

I'm not saying that you do not have them. I just find it "odd"

One doctor actually said you have all of those?? or did three different doctors said you have this and that?

Again please do not be offended by this question because I'm actually curious.
 
Babyblue said:
Was this all diagnosed by one doctor at once??

The reason I ask is... If it was done by one Dr. Or if you went to several and gotten different opinions by separate M.D.s.

That is a whole a lot. Of combination of illnesses.

I'm not saying that you do not have them. I just find it "odd"

One doctor actually said you have all of those or three different doctors said you have this and that?

Again please do not be offended by this question because I'm actually curious.
Click to expand...

You beat me to the question, Babyblue. I'm curious about that as well.
 
Babyblue said:
Was this all diagnosed by one doctor at once??

The reason I ask is... If it was done by one Dr. Or if you went to several and gotten different opinions by separate M.D.s.

That is a whole a lot. Of combination of illnesses.

I'm not saying that you do not have them. I just find it "odd"

One doctor actually said you have all of those?? or did three different doctors said you have this and that?

Again please do not be offended by this question because I'm actually curious.
Click to expand...


It was all by the same Dr. but with several different tests including blood, the pee in a cup deal, and some other way more uncomfortable tests. I went in as a new patient work up because we have just recently moved to the area and I needed a new doc. She did the initial exam annd did a round of bloodwork that day, she called me 3 days later and said some of it came back with some scores she was concerned about to come back in and give more "samples" so she could do some more tests and get opinions from some other doctors. so I went in and did that and Monday last week she called me back and asked me to come in again. She took *12* tubes of blood that time and said that wowuld be it on getting blood as I couldn't due to how much had already been taken on top of that days amount plus did skin samples, urine sample, "other" samples, as well as making me come back Tuesday and doing one of those stress test things where you get on a treadmill and they monitor your heart and all that. I had to wear a heart monitor for 48 hours starting when I left that day and when I went back friday she had me referral appointments for a rheumatoligist, OB-GYN, a pain meds specialist, and Pulmonary- for a sleep study. She said it was way too broad of illnesses for just her to deal with that I needed to see some specialists kind of like a team effort to help me and her be the main doctor over it all so all my records would be in one place instead of being bounced all over the place. The rheumatoligist is going to help me with the Lupus and the Sjogren's as they effect the the bones for me mainly, I have had arthritis ever since I can remember anyway so it is no big surprise to me that these "test scores" came back as some kind of illness that attacks my own cartilage and "lubricants" of my joints. the ob-gyn appointment is for the endometriosis I have had for years but haven't done anything about it cause it hasn't hurt that bad til recently. the pulmonary appointment I do about 1 time or a little less a year because I have had sleep apnea for at least 6 years due to the fact I weighed almost 400 pounds when I had my gastric bypass in 2003. the pain meds doc is to keep my meds in check very closely and monitored very closely for obvious reasons. My doc said she felt the reason she found all of this and wants me to go to these specialists is because all the pain and symptoms have came on in the last few months. She said a lot of times people don't know they have these kinds of illnesses until they get under a lot of stress which is basically all I have had over the last year. Both my parents died, mom from suicide, then dad of a brain aneurysm then we had to take on thier little Pomeranian and her health problems then in October we moved about an hour and a half's drive south to be closer to my hubby's work. neither mom nor dad had insurance that paid out except 1 military policy on dad that paid for the funerals and that was it. the house got auctioned off on new years eve on the courthouse steps in cullman and the vehicles were repoed not even a month after daddy died. the only thing that was left was really the only stuff I wanted to begin with, the picture albums and personal stuff and some of the furniture. When we moved down here we basically had to move both our house and my parents stuff into one house and we have been going through all of it trying to sort what we are going to keep or donate to the homeless shelter or hanna home or whatever. I don't want to sell anything, I want it to go to someone who can use it to help. The Raynaud's I have had for a long time but it does make sense now that I know what it is, not much you can really do about it unless it gets bad except for wearing socks all the time and gloves if its chilly or windy so you don't get too cold. My Dr. is really trying to help, she isn't giving me any new meds, in fact she has taken me off a few and its helped plus she gave me a diet to follow of stuff to avoid and that has helped too. And no you didn't piss me off or hurt my feelings, I would have been saying the same thing if I was reading this off of some one elses post so it's okay, you're more than welcome to ask anything and if I know the answer or feel it isn't too personal I will answer you....
 
Oh and Webexplorer, you're on the right track but I could never be Vegan or vegetarian, I like my proteins and meat too much to give them up. I am eating more fruits and vegetables now but see no end to my carnivorous ways:lol:, I hope I am not sounding ugly, I don't mean it that way, you've got some good advice, It's just I am not going to give up meat unless my doc tells me I got to. the best snack I can have is high protein, no fat, is actually good for you and you'd never think so but the gastric bypass doc told me about it after I could start eating crunchy stuff again, pork skins or chiccarones as they are some times labeled on the bags. Did you look up the new sweetener I mentioned, that Stevia that is just starting to come out? let me know what you find on it and what you think of it.....:)
 
steph9700 said:
It was all by the same Dr. but with several different tests including blood, the pee in a cup deal, and some other way more uncomfortable tests. I went in as a new patient work up because we have just recently moved to the area and I needed a new doc. She did the initial exam annd did a round of bloodwork that day, she called me 3 days later and said some of it came back with some scores she was concerned about to come back in and give more "samples" so she could do some more tests and get opinions from some other doctors. so I went in and did that and Monday last week she called me back and asked me to come in again. She took *12* tubes of blood that time and said that wowuld be it on getting blood as I couldn't due to how much had already been taken on top of that days amount plus did skin samples, urine sample, "other" samples, as well as making me come back Tuesday and doing one of those stress test things where you get on a treadmill and they monitor your heart and all that. I had to wear a heart monitor for 48 hours starting when I left that day and when I went back friday she had me referral appointments for a rheumatoligist, OB-GYN, a pain meds specialist, and Pulmonary- for a sleep study. She said it was way too broad of illnesses for just her to deal with that I needed to see some specialists kind of like a team effort to help me and her be the main doctor over it all so all my records would be in one place instead of being bounced all over the place. The rheumatoligist is going to help me with the Lupus and the Sjogren's as they effect the the bones for me mainly, I have had arthritis ever since I can remember anyway so it is no big surprise to me that these "test scores" came back as some kind of illness that attacks my own cartilage and "lubricants" of my joints. the ob-gyn appointment is for the endometriosis I have had for years but haven't done anything about it cause it hasn't hurt that bad til recently. the pulmonary appointment I do about 1 time or a little less a year because I have had sleep apnea for at least 6 years due to the fact I weighed almost 400 pounds when I had my gastric bypass in 2003. the pain meds doc is to keep my meds in check very closely and monitored very closely for obvious reasons. My doc said she felt the reason she found all of this and wants me to go to these specialists is because all the pain and symptoms have came on in the last few months. She said a lot of times people don't know they have these kinds of illnesses until they get under a lot of stress which is basically all I have had over the last year. Both my parents died, mom from suicide, then dad of a brain aneurysm then we had to take on thier little Pomeranian and her health problems then in October we moved about an hour and a half's drive south to be closer to my hubby's work. neither mom nor dad had insurance that paid out except 1 military policy on dad that paid for the funerals and that was it. the house got auctioned off on new years eve on the courthouse steps in cullman and the vehicles were repoed not even a month after daddy died. the only thing that was left was really the only stuff I wanted to begin with, the picture albums and personal stuff and some of the furniture. When we moved down here we basically had to move both our house and my parents stuff into one house and we have been going through all of it trying to sort what we are going to keep or donate to the homeless shelter or hanna home or whatever. I don't want to sell anything, I want it to go to someone who can use it to help. The Raynaud's I have had for a long time but it does make sense now that I know what it is, not much you can really do about it unless it gets bad except for wearing socks all the time and gloves if its chilly or windy so you don't get too cold. My Dr. is really trying to help, she isn't giving me any new meds, in fact she has taken me off a few and its helped plus she gave me a diet to follow of stuff to avoid and that has helped too. And no you didn't piss me off or hurt my feelings, I would have been saying the same thing if I was reading this off of some one elses post so it's okay, you're more than welcome to ask anything and if I know the answer or feel it isn't too personal I will answer you....
Click to expand...

Thanks Steph.

Wow!

That is a lot for a person to deal with.

I will definitely keep you in my thoughts.
 
I read your story. I am so sorry that your life is not easy. I just lost my favorite smart dog (4 years old) recently and it is not over for me, but I will get over with it. We just have to keep going our life.

I recommend you to read a website, and it is a very good information about health issues. It is impossible for me to know everything, but to learn new things one at time. Here is the link: Natural Health Information Articles and Health Newsletter by Dr. Joseph Mercola Please make sure that you sign up for your email subscription. It's free. I like this website because it included the people's comments at the bottom of the website. I think that you will find something on this website that you are looking for.
 
Steph, that's a lot for one person to deal with. I'm sorry, you're in my thoughts. Are there good treatments for lupus right now?
 
There is no cure but the treatments are really good and I am expected to live a long happy life as long as I do what I'm told by the medical team Dr. Toner has fixed me up with and do the right diet and exercize and take the meds I'm supposed to take and learn how to pace myself to keep from having really bad flare days. The flares are gonna happen but I am learning coping skill and they seem to be working, I'm not so stuff and in as much pain as I was in just 3 days ago... I feel like I can handle this, With my hubby by my side and my two fur kids and me being as rebellious as hell, I am gonna be fine. We know the reasons why my moods were all crazy and why I wasn't lazy but really couldn't get out of bed, why I would cry all the time from pain or depression cause I couldn't figure out why I wasn't able to do small simple everyday things like the dishes or walking the dogs or whatever. The dogs are fine granted they have a fenced in 1/2 acre lot they can go out and run and play all they want but I miss going out with them and playing with them. anyway thanks you guys for asking questions and being concerned and thinking about me, it helps to know I have friends.
 
and I also found out by doing a family medical history some things I didn't know before, My dad had the Raynaud's and mom had the Sjögren's syndrome. my moms mother died of Leukemia and my dads mother had Lupus. I did know that my dad was on blood thinners and high blood pressure meds and had heart problems and had thyroid cancer and had chemo plus surgery to remove the thyroids. He was also in the last few months of his life a full diabetic. I knew mom was a type two diabetic and had some other small issues but the Sjögren's was the opening door to her developing the non Hodgkin's lymphoma. Dad had Diphtheria when he was like 5 or 6 which caused him to start having hearing problems due to the high fever he had while he was sick and caused a little bit of damage in his heart wall. so I got all these genetic things from a long history of family illnesses, Thanks mom and dad for the GENES!
 
I selected some of the list from the Mercola's website. I let you to read these links (Lupus, Raynaud, etc). He is a doctor, and I am not a doctor. I hope that you don't mind to read these articles, and there is a few more list on the Mercola's search. It might be worth it for you to explore the sources.

Green Tea Found to Protect You From Autoimmune Diseases

One Man’s Triumph Over Raynaud’s Syndrome, Lupus and RA with Dietary Changes - Articles

The Miracle of Magnesium - Articles

Rheumatoid Arthritis and Scleroderma Natural Treatment Protocol - Articles

Off the subject, I read somewhere on this site that it is better for anyone to be safe to take lower dose of pills in order not to harm our body. This is where you are able to control your balance. I think that makes sense. Actually, it's your choice. I made my own choice to keep in balance between my medicines and my food. My hearing friend took my advise, and she is getting better, but in a long run. She manages it pretty good for the first time in 30 years.
 
Hi steph. I came here to see if there were any topics posted on Lupus or any other autoimmune diseases. Currently I am in the process of being diagosed with Lupus. It has been a very long and fusterating year for me. I've seen Five doctors over the past year and all of them agree it seems to be an autoimmune problem but I do not meet enough critera at this point to be diagnosed with a certain disease. My symptoms are as follows: Joint pain, mouth ulcers, low grade fevers, low platelet count 1x,face rash when in sun, eye floaters and constant headaches, severe fatigue, brain fog and a lot of other stuff that makes no sense. I've been told that it could take a loooong time before I actually get a diagnosis of lupus if it is because it's so difficult to diagnose. My ana is pos, but it's a low pos. So far my other blood work has come back normal cep' for my ana. I am a member of lupus.org and have received a lot of help and good advice from them regarding this and you're not alone in this. It's depressing when your doctors tell you that something is wrong and yes we think it's lupus but we dont' want to diagnose you with it yet because "you're very young and it will affect you for the rest of your life", those were my doctors excat words. I won't know anything more until my next appointment with my rhumie in feb.

:::hugs::: you're not alone.

Sheri.
 
Jill and Babyblue; if it hasn't been stated already, it is very conceivable to have Raynaud's, Sjogren's, and Lupus alltogether.

Steph with your family history, has your physician verified the nonpresence of thyroid autoimmunities IE Hashimoto's Thyroiditis. Good luck and best of wishes for you.
 
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