scared sick. is this lupus

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val7
New Member


Date Joined Apr 2015
Total Posts : 7
   Posted 4/4/2015 9:12 PM (GMT -6)   
I'm 40 years old and have been experiencing vein swelling. This seems to go and come..literally. One minute the veins on top of my feet or hands will look full of blood like they are going to pop and the next they are fine. An ANA test along with many other blood test were done and all came back normal including the Sed rate except the ANA. It shows +2 1-320 speckled. Vitamin D low and B12 low but I've dealt with these two issues a few years. I'm terrified. I am being referred to a Rheumatologist for further testing. What does this mean... the results? I have seen 3 MDs and none know why the veins are swelling and going down. Vasculitis was discussed but all 3 MDs said it does not come and go within seconds. I have been on Lopressor for 15 years. No fatigue. No rashes. I do have the red nose and cheek look but I was looked at by all 3 Drs and all said it may be from beta blocker because if I just touch it, it gets reds andvwhen I get embarrassed it does the same thing. Ive had it for years. I'm very scared for my Primary couldn't answer my questions. Does this disease attack fast? How long can a person live with this? I don't have a confirmed diagnosis of anything yet but I can't sleep and I'm so consumed with this that functioning with my kids is hard. Can anyone please give me any information.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/4/2015 10:16 PM (GMT -6)   
I've never heard of this kind of vein swelling; it's not a usual symptom of Lupus.

Lupus can sometimes become very serious, but unless you have kidney or other organ disease it can take a while.

Try not to worry, just go ahead and get things in order for your rheumy visit. Read the Lupus 101 thread - gives you hints on how to approach the Dr visit.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

val7
New Member


Date Joined Apr 2015
Total Posts : 7
   Posted 4/5/2015 8:20 PM (GMT -6)   
Thank you Lynnwood. Hope you can help answer a few more questions. As for the red "rash" or red area that goes across my nose and down the bridge, I have had it for years. It is usually very faint unless I get upset, hot, cold, embarrassed or if I just rub it. Does this sound like the rash that I've read about? Also I see people taking about muscle and joint pain. I have not really had joint pain but at times I may have muscle pain that seems to hit and leave. Like an ache. Its not like it stays for a while and then leaves... it is sort of hard to describe. I actually sat on the sun today and it felt good. I get cold easy so it helps with the aches. I looked for rashes later on my arms and legs but I did not see any. Do you have any suggestions about my Rheumatologist visit? Thanks again

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/16/2015 12:45 PM (GMT -6)   
Stay out of the sun and go gluten free. Google functional medicine-these doctors claim they can reverse these chronic disease. I did have my veins swell up and bulge out of my skin, and the vein felt hard and kinda sharp to touch. Does that sound familiar? I tested pos for 1 of the 2 test for lupus and going back next week for 2nd test. I know in my heart I have this disease,but plan on kicking it as hard as it has kicked me!
Dr Susan Blum The immune system recovery plan will explain the leaky gut theory and how it is related to joint swelling and other symptoms that take quality of life.
please ask me anything-
The deal with sun is the ultra violet rays somehow trigger the lupus symptoms.
hope this helps Detox is sooooooo important

val7
New Member


Date Joined Apr 2015
Total Posts : 7
   Posted 4/18/2015 9:06 PM (GMT -6)   
I have not yet been formally diagnosed but I have a feeling this is what I'm dealing with. The only veins to swell have been on top of feet and top of my hands. They swell when I stand and go away when I lay down or just lift my feet. My Rheumatologist said that he has never seen this. I just had a venous study on my legs and test came back normal. So.... now I'm waiting on my blood work from Rheumatologist. He said it will take two weeks. I'm having severe panic attacks because I don't understand what's happening and I've read some terrifying stories about AI diseases. I'm not resting and working is difficult because I can't turn my mind off. I'm so tense that my chest muscles hurt and relaxing is not happening. ;(.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/21/2015 10:45 AM (GMT -6)   
Hi Val7,
I sure hope this helps. My symptoms were so unusual at first, than they creeped up on me quickly. Not in a million years would I have thought it was a common lupus or autoimmune disease symptom.

The feeling of something in my eye, but nothing is not there. I thought I was crazy.
The inability to scream. I could talk, but like a hoarseness strain when yelling out.
Subtle sores in my nose that did not hurt to touch. Barley knew they were there.
Hair falling out
Deep breath breathing. My son would ask whats wrong mama? I had no idea I was doing this.


I am requesting for the third time (Veterans Hospital) for the second ANA- The first was the lowest tier 1:80.
The sun did trigger my heart to feel swollen and my breathing was deep last week. When my veins swell they feel like they will rupture. First flair since Oct,2014. I hate them too.

val7
New Member


Date Joined Apr 2015
Total Posts : 7
   Posted 4/21/2015 11:04 AM (GMT -6)   
Thanks glutenfree33 for the information. Those are pretty "out side the box" symptoms. WOW. I would have never guessed that either. This waiting is the worse. I was told that it takes 2 weeks to get all blood work back so I will find out on he 30th. As for my veins swelling...it comes and goes. As soon as I lift my feet the veins return to normal. Its odd. I have seen 5 MDs and not one can tell me anything. Did your vein swelling come and go with position? I had a CT scan this morning of my stomach and pelvis area to make sure nothing is enlarged....waiting on those results as well. All this just makes me want to crawl in a hole and never come out. I am really having a difficult time functioning. My kids know something is up and I am not doing a very good job at covering it but I will be glad when I see the Rh next week to get the results from the 20 vials of blood that he drew. Hope you feel better soon. I will say a prayer for you.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/21/2015 12:37 PM (GMT -6)   
Hi Val7
Yes like on command it would swell, but stay for a few minutes. I could trace it up and around my leg or arm. It popped out and was tight looking to feel and touch. Experienced this a handful of times.
When my body was cold my thumb and wrist area would go numb. Has this happened.

I went from swimming and running at the YMCA, and being
being in tune with my healthy body to processing many,many symptoms.I trusted the Docs, and my body developed even more debilitating symptoms. I am saving money to see a functional medicine Doctor. The miracle of not eating gluten was a life saver. I really thought my body was decaying inside out.

Being mindful with the unusual symptoms and not letting the feeling of being crazy get in the way is a challenge.
I wish you peace and good health

val7
New Member


Date Joined Apr 2015
Total Posts : 7
   Posted 4/21/2015 1:06 PM (GMT -6)   
Glutenfree33...thanks for the info. This sounds like my veins yet the Rheumatologist said that he did not think it had anything to do with anything at his time. When I lay down the veins return to normal or just by lifting my feet. Crazy. I do have issue with being cold. I seem to get cold easy but again I am not sure if it is my anxiety doing this or the underlying issue. How has being gluten free helped? What do I do to become gluten free to see if it helps? Where would I find a functional medicine Dr?

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/21/2015 2:10 PM (GMT -6)   
Hi Val7,
The theory is Leaky gut and how gluten molecules look like virus or bacteria invaders when leaked into our blood stream. Our immune system turns on the defense to get rid of them the by product chemical causes inflammation or to many anti-bodies I believe.

The way I understand it is the gluten molecule looks just like or mimcs invader looking cells.

Gluten is in just about all processed food. It is in flour, bread, soups, and the list is long.

If you can stick to beans, rice,potatoes, meat,fish, and all veggies and fruit for 3 days you might notice a difference in symptoms that you would have never thought not eating this molecule could do.

I felt like I had a second chance.
So many symptoms and the vein popping was one of them stopped.

I hope it works. Truly worked wonders for me:)
My friend had bowel problems all her life. She could have a bowel movement every 5-8 days and she tried everything. Went to the Functional Med Doctor and tested her blood/urine, she was told to stop eating gluten. She did and daily bowel movements she has.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/21/2015 2:43 PM (GMT -6)   
I became very forgetful too-more than usual,and my anxiety was so much. It was treated with gabapentin it helped with my pain and anxiety.
I was reading how some Lupus can be drug induced lupus> keep in mind if you take any NSAIDsThe military hands it out like candy, and so many of my friends have some sort of autoimmune disease.motrin,asprin,naproxen. I try to avoid all three. This is the only input my Rheumatologist said these drugs can make it worse, and she said take an Aleve for pain. Not very happy with her service I also read there are other drugs that can induce symptoms.

val7
New Member


Date Joined Apr 2015
Total Posts : 7
   Posted 4/21/2015 2:57 PM (GMT -6)   
Wow...glutenfree33 you are giving me so much information. I was taking Motrin a lot at one time. I also take a Beta Blocker to help slow my heart rate. I am not tired or fatigued at all. I am more anxious then anything right now which is making working difficult. I just had my first visit with my Rheumy ad he seems to be very good and concerned. He spent a while with me in his office. I hope he is good at what he does. I will try the gluten free thing to see if this will help me. I am all for that. I also know of a Pharmacist that can help with the gut issue. I will be seeing him Friday to see what he can do with me. The last time I went in he told me to take curcuminoids. He said these help fight inflammation throughout the body. I plan to ask the MD about this. Like I said, no formal dx yet but from what I have read on this forum I feel like I know what I have ahead of me and I am terrified. I work in the health care field and I know what this disease can do. I just have to pray that God will guide me and heal my body. I will look into the Functional MD. I have never heard of this. thanks again for all of the info. I will start tonight.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/24/2015 3:44 AM (GMT -6)   
Hi Val7, best wishes to you and anyone reading this.
I ordered rawjeuvenate detox kit for 117.00 from amazon it includes the probiotics, aloe, super fiber,protein power and something else. I have enjoyed a healthy life style, ate pretty good, vegetarian for 25 years, read my spiritual inspirations, and had friends. No health problems and never really thought about illness. In fact I was so naieve to disease that I thought you had to be born with something to get sick with MD,MS, or Lupus. In my opinion, this thing that has consumed my body can be reversed or at least slowed down.

I went from a care free fun lifestyle to meeting a man that had bipolar and drinking a lot on his meds. This does not mix. In a nut shell, my situation created stress and anxiety. My body stored toxins and maybe the infection could not be wiped away because my body was overwhelmed

Now I know what they mean when they say we are predisposed to illness. Between a tooth infection, July 2010, lung infection Dec 2011, exposed to cleaning chemicals, black mold and not properly dealing with stress caused my body to over load and not fight all the incoming pathogens. My strategy is to get rid of them before I have to try meds.

Post Edited (glutenfree33) : 4/24/2015 8:33:02 AM (GMT-6)


glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/24/2015 9:46 AM (GMT -6)   
I invite any input. In my opinion these disease are in us until activated by environmental triggers, or not processing incoming chemicals (stress and anxiety) fast enough. So I believe, at this point in my health and symptoms, I can slow down and eliminate a lot of debilitating activity in my body.

peace to all

Rainbow23
New Member


Date Joined Apr 2015
Total Posts : 2
   Posted 4/25/2015 12:44 AM (GMT -6)   
blush My veins started swelling in my hands and feet when I was around twenty years old. They would swell and then suddenly go back to normal. At the same time I began having other symptoms. I would have unexplained illnesses that would come on suddenly. I was tired all the time. I began breaking out with rashes, sores, like cigarette burns. Pain all over my body. Originally I was diagnosed with Raynauds disease for the swelling veins. It is frustrating but there is not much that can be done for it. I also have fibromyalgia which causes constant pain. I also have lupus which can have hundreds of symptoms depending on the individual. I also have idiopathic noropathy which causes a burning, tingling pain in my hands arms and feet. I have other conditions as well but as for lupus, I've learned over the years, stress can and will cause my symptoms to worsen. I take plaquenil every day and when I get sick the doctor usually puts me on prednezone instead of antibiotics. The prednezone generally works better and faster. I have not found anything that really helps with the rashes. Often all these conditions can occur when you have lupus, as well as others. Living with lupus is a daily battle but you have to try to stay positive. I know it is hard, believe me, but a positive attitude can make a world of difference. My nervous system has been affected by the lupus, I have depression anxiety disorder. When first diagnosed I was scared, depressed,basically freaking out. But over time I have learned that I can't waiste time stressing. I am 50 now so lupus is not necessarally terminal. It is a hard life, but spend your time wisely and keep your chin up, believe it or not it could be worse,trust me,I know.

val7
New Member


Date Joined Apr 2015
Total Posts : 7
   Posted 4/25/2015 7:37 PM (GMT -6)   
Rainbow23 thanks for telling your story. I go next week to get all of my blood work back. So far all I know is that my Sed rate, CBC, and WBC was normal with a positive ANA. As for the vein swelling its odd. As soon as I lift my feet, it goes away and yesterday I worked a full day and the veins on top of my feet looked normal. Does Lupus symptoms come and go within seconds? Do you have migratory pain that come and go in seconds? My Rheumatologist would not explain anything to me until the blood work returns. I have had to wait over 2weeks and I have began having panic attacks because I need answers and I'm scared. I've read several forums and its terrifying. I'm pretty much the sole caretaker of my kids and I honest worry about them. Any suggestions for my visit next week? Also have you heard of Curcuminoids? They help with inflammation.

Rainbow23
New Member


Date Joined Apr 2015
Total Posts : 2
   Posted 4/25/2015 11:35 PM (GMT -6)   
val7 some symptoms can come and go quickly but the disease I was talking about in respect to your veins is called raynauds, its seperate from lupus. Ask the dr. about that.I have had migratory pain all my life. I to am a single mom and am the sole caretaker so I understand your concern. I went through the same anxiety when I was diagnosed. Lupus is a very scary disease. But you can live for years with it. When diagnosed I was told there was no cure and I was terrified. But 18 years later I am still here. Make your doctor explain everything in detail, you are the patient the doctor is the caregiver. If your dr. does not take the time to address the issues you are dealing with to your satisfaction, find a new dr.. If you do have lupus, it is very important to have a dr. you can count on and trust. One that will listen, and explain things. Unfotunately with lupus you will be spending alot of time with your dr. from now on. Make sure he or she is the right one for you. You need a dr. that listens to you and doesn't leave you feeling worse when you leave than you did when you came in. Also there are 2 different kinds of lups, SLE lupus which can attack the kidneys, and discoid lupus which affects the skin and has other symptoms but is generally not life threatening. Be sure you find out which you have if diagnosed with lupus. If you have discoid lupus it should put your mind at ease. Although still difficult to live with, because of symptoms, not as scary. I have SLE lupus so for years I worried about it attacking my kidneys, what would happen to my daughter? So I know the level of anxiety your going through. I was placed on disability when my daughter was 1 year old. She recently turned 18 so now my stress level is not as high. For me though, a good dr. who listens and explains to my satisfaction is key. I fired several Reumatologist's over the years, until I found the right one for me. I had to take Xanax for a long time when first diagnosed, for my anxiety. You may want to ask your dr. about that. Stress will make your symptoms worse and probably make you sick. Feel free to contact me again if I can be of any help.
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