Does anyone have Lupus that is willing to share advice?

[Diamondinmypocket]

I have been ill for many years. 6 years ago I tested positive for the ANA antibody. I have seen 2 Hematologists, who say Lupus, my 3 OB/GYNs say Lupus. My last PCP says Lupus. But only one of 3 ANA Antibody tests say Lupus. I had IBS confirmed last month by GI who also says Lupus.That

I go to my PCP tomorrow because all of my health problems are hitting at once. I think its a flare. And I have been feeling worse and worse past week of so. I am absolutely miserable at this point.

(in case you are not reading the mare stare forum, I just found out my mare is surprisingly due to foal sometime soon and I am not ready for this. I have never done this before)

I am sure I will be visiting more specialists soon. But in the mean time can anyone tell me what I can do to feel better?

I feel like I have the flu body wise. My stomach is acting up, I am getting a few sores, my joints hurt. I am so tired and really wanting to give up but that will not hhelp at allAnd I am pretty short and grumpy so please don't be offended if I am in anyway rude or such.

Thanks so much ahead of time,

Nicole

 

[Debby - LB]

Good luck to you with your Dr. appt. today! hopefully they can help you.

My husband does not have Lupus but he suffers with chronic fatigue, fibromyalgia and bi-polar depression. He has suffered for years with constant malaise and has mentioned that he always feels like he has the flu. I have this wonderful little porcelain "pretty" that I set out every year, it's a santa suit on a clothes tree...it was on the dining room table this year and one night he looked at it and said "that's how I feel, empty".

I don't know which came first the pain or the depression but I know you must be miserable. You can't give up, like I told him you can't help how you feel but you can't dwell on giving up.

 

[MountainWoman]

I'm so very sorry to hear you aren't feeling well. I think the best advice I ever got was to allow myself permission to rest and when I felt terrible, just take a break and not worry about anything else. So allowing yourself time during the day just to stretch out on your bed or in a comfy chair is really important and when you're doing that don't worry about what you should be doing. Just rest and enjoy the rest. I also have a full body length heating pad. It does wonders for those aching joints. There was also a thread recently about heated mattress pads and they sounded wonderful too. Another thing that really helps is if you have access to a pool where you can take a water class designed for arthritis sufferers. Those classes are good to keep you moving and very gentle and can do a lot to help you feel better.

Hang in there. It's not easy but we are all here to help support you.

 

[KanoasDestiny]

I meant to post on here yesterday but I was experiencing posting problems. My best friend's sister just found out that she has lupus. She kept getting reoccuring bouts of cellulitis (spelling?), and after numberous hospital stays, she had to have her leg amputated. She was doing well at first, but then, her other leg started showing the same symptoms. Recent bloodtests confirmed that it is indeed Lupus. Her sister (my best friend) has Rheumatoid Arthritis, and has many of the symptoms you describe. I know that both of them are still trying to find relief.

It might be a good idea to go and see a rheumatologist for the aches and pains, and a dermatologist for the sores. I know there are other doctors that specialize in different Lupus-related things, but it depends on what your symptoms are.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_research.aspx?articleid=2255&zoneid=3
http://www.ehow.com/way_5158293_lupus-pain-relief.html

 

[Diamondinmypocket]

I spent 2 hrs in Dr office. I was told if I felt so bad to go to the er. That's it.

 

[Silver City Heritage Farmstead]

I have lupus also. I'm so sorry you were told to go to the ER. This has been my experience as well and is (for me) one of the most frustrating things about lupus. It is such an individual disease, presents differently in different people and is difficult to manage without an empathetic doctor who can work as the lead with specialists.

I was diagnosed 10 years ago, didn't want this and said "I'll ignore it and it will go away"...guess what....it didn't.

I'll be following this thread with great interest as the symptoms you describe are so familiar to me. Right now, my best therapy is Casper and my time out at Paula's (paintponylover). My spirit gets renewed and takes me off the pity-pot of my physical pains.

Thanks for starting this thread...Julie

 

[Diamondinmypocket]

I was 30 when I had my first pulmonary embolism. I had two more in that year. Many people do not survive these. Let alone 3. Saw the best hemotologist who nailed down lupus when all other clotting disorders were ruled out. For a year it was protein s diffecienty. Then that was ruled out. First ana test was positive. Had a tubal pregnancy, and another 2 docs tested again and did it when I was taking coumadin. I read that being tested while taking it will mar the test. I had the last test done when I started getting sores. That doctor could not figure out why the test was negative. Over the years I have gotten more and more strange symptoms. The joint pain and mental imparement are latest to pop up. . It doesn't help when diagnosed bi polar, but my symptoms do not match bi polar 1,2 or mixed. Even shrinks are confused. Plus I lived in Colorado and my state is behind the times. But when you have any mental imparement, its an auto flag to drug seeking. I have pain med that belong to my husband in my house. Neither of us use them. Its hydrocodone. How luck I would be if I was a drug abuser.

I was sobbing in the drs office today when all she did today was lecture me on importance of coumadin, did not look at my lesions, didn't listen to a word I said and passed me over to the er. I went to my DOCTOR to avoid the er. And when your brain won't work, its hard to communicate and not shut down. And how do you explain your brain not working? I can't even spell today because it is so bad. I told her I was so gone physically and mentally that I can barely change my babys diapers or remember if she just ate or not.

And what do you do when your Dr thinks its all in my head because I have a mental disease?

I am really uncomfortable so I am going to read to give my head a rest so I can get a rehumatoligis tomorrow.

Hope you all and your family and friends are feeling well tonight. I would invite you to an awesome pity party but I'm too tired to address the invites.lol. Please say a healing prayer for me. Blessings everyone.

 

[Diamondinmypocket]

So I just got a call from the Dr. Good thing I convinced her to take blood. I have to go to the hospital right now. Something is wrong with my sodium level. Too low I guess. It is 120. This is a new one! But my brain is working much better today.

 

[Diamondinmypocket]

Now being transported to another hospital to be admitted. Has anyone with lupus had a low sodium problem before? I was 5 points away from cardiac arrest.

 

[KanoasDestiny]

When Lupus is involved, there can be several reasons for low sodium count. Do you have kidney, liver, or heart problems? When water has a hard time leaving your body, or you experience excessive thirst, it can dilute your system, causing low sodium levels. Sometimes there can also be an excessive amount of anti-diuretic hormone in your body.

 

[Diamondinmypocket]

I am still awaiting answers. My sodium was 124 at 3 am. Having more labs dawn this afternoon and will see how it is going. Never had any organ problems but I notice as the amount goes up I feel better! More hurry up and wait. Its so nice out that they call my cell when I need to come into my room for something. Rather be outside.

 

[SugaryCharm]

Glad you are enjoying some nice weather while you wait for answers, and glad to hear you are feeling better. We're thinking of you--keep us posted!