Lupus Questions - Feeling Unwell

Hello all,

I am here for some advice and insight from others who might have experienced something similar to me…I apologize for the long post in advance. I am a 34y old female with no children.

I returned from my 3 week honeymoon on Oct 16th and from the 12th I actually started feeling pretty bad. Initially, it started off with severe chest pain and shortness of breath exacerbated by mild walking. I was admitted to the hospital and after a host of tests, I had an Idiopathic Sinus Tachycardia diagnosis and some other questionable test results, but not enough to alarm the attending cardiologist. I was discharged home with Beta-Blockers. The pain persisted, but it had changed to having the pain at rest, when sleeping, breathing, eating, moving, and radiating down my left arm, neck, and back. I had several ED visits – probably every other day as I was feeling worse, with weakness, severe nausea, fatigue, joint pain, abdominal pain and weight loss of 17lb in a month. I was only able to sleep elevated due to pain laying down. No one provided any insight and some ED docs labeled me with anxiety etc. After 20ish ED visits, I was sent to an Internal Medicine MD who ran some tests for autoimmune diseases as he mentioned it sounded inflammatory in nature, and my values are as follows:

ANA: 1:160
AntiDsDNA: 23
C3 &C4: lowest value of normal - right on the cusp
CRP: Normal
ESR: Pending

Prior to this event, I’ve had random episodes of unwell-ness, but was able to bounce back and continue life as normal. In the last four years I’ve had body rashes and hives (painful and itchy), kidney issues, oral sores, sore and swollen red knees, the face butterfly rash, unexplained fever of 38.2 for a month or so at a time, abdominal pain/burning and bloating, back and hip pain, elbow and wrist pain, and unbelievable neck and head pain. The headaches feel like pain near the base of my neck, which is excruciating. It sometimes feels like shooting sharp electrical shocks. In those moments I cannot concentrate or think at all and almost feel like I’m about to have a seizure. Before these four years, I was healthy and never had any health problems. Throughout the last four years I just thought these symptoms were part of aging, or life stress, or body fluctuations. I lived life as normal and didn't dwell on them because they seemed to improve. But now, I am home bound. It is my longest episode and the symptoms with the bloodwork align with a possible autoimmune diagnosis as per the Internal Medicine MD… so here are my questions for you guys:

1-How quickly do your rashes appear and disappear? How long do they last? Do they feel burning sometimes?
2-What about pleurisy or pericarditis? Can it go away in a day or so or does it normally last days/weeks?
3-Can you feel bad for part of the day, but good for the other part? Can Lupus symptoms fluctuate and change drastically thru out the day so quickly?
4-Can your knees swell for just a few hours and return to normal after for no reason?
5-Can an AntiDsDNA value ever change back to negative…?
6-Does an ESR have to be elevated to confirm Lupus flare? My GP said that the CRP and ESR have to be elevated to confirm flare, but I read online that it's not the case always...
7-Also, can I take NSAIDS daily as preventative measures for the inflammation? Is that something normal?

I guess I’m just wondering if what I am feeling is in line with something like Lupus. Some of my symptoms have lasted a whole entire month with no relief, while others change throughout the day. It’s so incredibly odd…

In advance, I really do appreciate your time for reading and posting. I am suffering with so much anxiety from this having lasted 6 weeks with no real answers, that I am desperate for relief. I am waiting to see a Rheumatologist to discuss further. Any questions I should be asking?

Thank you kindly to all. Sending health to everyone.

Hello again,

Thank you to all who have answered

So I have my appointment with the Rheumatologist on Dec 4th Monday. I received my ESR as well and it was normal...I just don't understand it, but like it's been mentioned, it can test negative. I wish I would understand the physiology behind it all.

I'm feeling a bit better today in terms of the pain, but I've tried changing what I eat as I read online that can help as well. I basically can only eat pureed food so...I also started some vitamins so here's to hoping to more improvement. I'll keep this discussion posted in case someone else can benefit from this experience down the road too. Plus, I really appreciate the support. Grateful.

One more question:

Is it worth looking into a food sensitivity test? Would that be something to do to help an autoimmune disease? My GP said it's not worth it, but I noticed that foods have affected me more so in the last few years than before...I'm just wondering if others have benefited from taking this test?

Thank you all for your time and thoughts. Hope your night is good.

If you are diagnosed with Lupus, you might want to look into reading the commonly called "lupus bible" - the book "The Lupus Book: A Guide for Patients and Their Families", by Dr. Daniel Wallace. It makes reference to a few foods that aren't great for Lupies - such as legumes. And most people these days are aware of the fact that sugar is bad for any inflammation.

Hello all,

I wanted to update the thread as I have been officially diagnosed with Lupus. I saw the Rheumatologist on Monday and I started Prednisone 20mg/day and Planequil 200mg/day. I am hoping so badly to feel better. The fatigue, joint pain, pleurisy, and overall un-wellness is very hard to deal with. What I also find is that I am so sad. I feel like I am constantly on the verge of a breakdown from the sadness of losing my quality of life. I feel so restricted and badly want to return to work…I feel so unproductive...

I was wondering if others have shared these feelings and if they received treatment for the mental toll the disease brings…I almost feel like I am falling into depression. And I am always scared and worried about being home alone when I feel so unwell. If you have received treatment for it, what worked for you? I’d like to work on feeling better, but right now I just can’t see the light at the end of the tunnel….I was hoping others could share how they overcame their initial diagnosis and dealing with the flares…I feel lost.

Any insight would be very much appreciated…thank you.

P.S. My CRP and ESR were normal, but the Rheumatologist stated these values can be normal and still have a flare (Just wanted to add this for others looking for different experiences).

Thank you Lynnwood for your wisdom and words of support. They are inspiring to me right now more than ever.

I have some more questions for you all...So since being on the Prednisone and Plan, I feel mildly better. Not a huge improvement by any means, but I feel about 25% better. The pleurisy has subsided and my eating has improved. I am not as achy. The fatigue and joint pain persists and so does the pericarditis pain. My questions is:

1-What does your pericarditis feel like?
2-How long from when starting treatment, did it improve?
3-Could this be something else?
4-Should I be taking something additional like Advil?

This is what it feels like for me:

I feel okay at rest mostly. Worse laying down on my back, side, or stomach. Occasionally the sharp/pinching/burning pain happens when I breath. It always happens when I walk. It radiates to my sternum, left side breast, neck, shoulder, arm, and underarm. Also, when I walk my heart rate jumps up with the increasing discomfort. Is this how it feels for others?

I know it has only been a few days since the treatment, but I am so desperate to move more and be more active. Thank you all for your input.

Hope everyone is having a wonderful night

I don't have any personal experience with pericarditis and don't know very much about it. I would ask your Dr the questions you posted here.

Hi guys,

HJQuinn- I'm sorry to hear you have been unwell. How have you been doing? Please update us on your appointment and how you've been feeling. Hopefully you were able to get some answers and relief.

Just wanted to update you all on my situation. Hoping it helps someone down the road…

So after the Lupus diagnosis, I have been put on (at different times, but taking them all at once now):

- Plaquenil, Imuran, Prednisone (still tapering), and Colchicine

My main persistent symptoms are the chest pain, shortness of breath, and incredible fatigue, which have yet to resolve. It’s presumed to be serositis. Most of my other symptoms have improved. Unfortunately I also developed Vitiligo I suspect as I started finding white patches on my legs and arms (my dad has this and it looks so much like his). I will ask my MD about this.

I was able to meet with the Lupus Clinic and their standard of care surpasses any Rheumatologist I have seen since this ordeal. I am now being seen by the Lupus Clinic and a local Rheum in-tandem. I do blood work every two weeks. My blood work is all normal now except there has been no improvement at all in my Complement 3 and 4 levels. They are both moderately below normal. I’m not sure what this means, but I guess it makes sense that I don’t feel better? Also, I have extremely high antibodies to my Thyroid…in the thousands. The doctor thinks the Thyroid will be next to go so we are testing this regularly as well.

Because of lung and heart involvement concerns, I will finally be having an MRI of the heart this March 22. So far, the other tests have shown to be okay-ish, but the Lupus Clinic MD is unsure because the other tests (EKG, Echo) do not always identify Pericarditis or Myocarditis. The Cardiac MRI is apparently the best tool next to a biopsy.

Also, I agreed to participate in Lupus studies conducted by the Lupus Clinic…hopefully we can have a better understanding of this disease.

I guess my questions are…
- How long have your flares lasted?
- And once you go into remission, does that mean you don’t feel any of the Lupus symptoms?
- Can anyone offer any information regarding Lupus and the heart from their experience?

It’s already been 5 months since I’ve been homebound because of this and am really hoping for an end in sight. It hasn’t been easy mentally.

Thank you for reading this. I will be posting this to the Lupus Site as well!
Sending health to all.

Hi, it sounds like you are having a rough ride.

I have been taking 400g Plaquenil for almost three months and I am hoping that I will start to feel like my old self. The problem I have is acute stiffness/arthritis. At one point it was at a level 9 out of 10, and now after taking the Plaquenil I am at level 5 I think, so I'm not really where I want or need to be.

Good luck with your angiogram.