Sunday, January 22, 2012

Erythema Nodosum More Pics

As this progresses, the red hot, painful nodules are now becoming large, bruised nodules. Unfortunately right when I thought I was getting better, new ones formed the other day. Tonight I am feeling better again, but who is to say that a new crop of them won't form tonight.

The main symptoms associated with Erythema Nodosum is pain, swelling, joint pain, an overall sick feeling, pain, pain, pain and more pain. I have not been able to wear shoes for at least a week and have been sporting my lovely slippers everywhere I go. Sleeping is not easy either. If the sheets touch the spots, it hurts like hell.

I have been researching and these painful lumps may very well give me the answers I have been looking for for the past 11 years of my life. I almost feel like crying in a way. Lately my husband and I have been praying a lot for healing, guidance, hope and strength to get through these times. I asked God to show me anything that may help me to find out what is really going on. I kid you not, but just a few days later these bumps showed up. When I realized what they were, it was like a brick of information struck me upside the head (haha). Maybe I won't get all of the answers I am looking for, but it very well is leading me down a new path. For a very long time I have not had any new leads and have been just chugging along doing mostly nothing new.

Tomorrow I may find out what is going on, or not. Two diseases that can cause these bumps are two diseases that can also cause POTS. Coincidence? Maybe, maybe not. For once in the past 3 years I am actually feeling a bit of hope of finding some answers. Then in another 5-6 weeks I will have the genetic test results back as well. It is exciting times for me.

Just to note. My heart is skipping beats left and right and I'm getting a lot of shortness of breath today as well. Not fun.

9 comments:

Nienke said...
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Birdlady said...

I'm sorry you have had to suffer with EN too. It is just awful. Yesterday was the worst day I have had with it yet. I like you, I could not walk at all. The pain brought me to tear several times and now the swelling is truly unbelievable. I can't even see the nodules anymore because the swelling is sooo bad. I'm going to make a post about it tomorrow, so watch for that.

I had a lot of tests run and a few things have actually shown something. However even with some positives, it just makes me ask even more questions. It does look like I had strep throat a few weeks ago, but now I'm concerned this might be rheumatic fever. I never went to the doctor to get antibiotics because I never actually had a fever. I didn't think the cough and sore throat was that big of a deal. :( Well I was definitely wrong!

In addition, I also have a positive ANA. That's all the nurse told me on the phone and that more testing needs done. :( It's just one thing after another for me at times.

So now I just wait more to see what becomes of all this.

I am so glad you found my blog! I'm sorry I made you cry though. heh! Feel free to stop by to continue watching my journey with EN. I hope there's a happy ending here.

Birdlady said...

I wanted to ask you if you got full leg edema with your EN? I feel like my feet, ankles and legs are going to burst.

Nienke said...
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Nienke said...
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Nienke said...
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Birdlady said...

Oh feel free to leave as many comments as you like! It doesn't bother me at all. I had the generalized swelling around the nodules, but now it is really something else. :( I made a new post with 2 new pics, so be sure to check them out. I'm heading the cardiologist tomorrow to make sure my heart is ok. Then if that all checks out, I'll just head back to the rheumy. Did yours check for lupus, sjogren's and any other connective tissue disorders? If you look at my latest posts, you'll see all of the labs mine ran for me. :)

I don't have any nodules on my arms or wrists, but yes the first week I had terrible joint pain all over. An old shoulder injury hurt, so did my left wrist, knee, hips etc. I still have it a little bit, but now that I'm on colchicine and a NSAID, a lot of that is gone. However if I come off of those drugs, the pain soo bad that I literally will be in tears. I'm afraid that I'll have to come off of these drugs eventually though. I really hate take meds like this long term when it's not doing anything but cover up symptoms! Grr!

Nienke said...
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Birdlady said...

I think Sarcoidosis was ruled out for me because my chest xray was normal. I'm soo sorry you have that. I know it can affect a lot of different organs and as you said goes in remission and then flares up at times. Your joint pain is probably from the sarc, but don't quote me on that. I'm fairly certain that's one of the main symptoms of it. :( Hopefully your doctors can help you out! I was so afraid that is what I had, but this was before i knew I had strep throat. I suppose I should be thankful that I had strep because that tends to be a very common cause of EN. I just have to make sure I didn't get rheumatic fever though. I am getting that echocardiogram done on the 13th, which seems like soo far away. So we will see what happens.

My swelling is a tiny bit better today. This morning it was a lot better, but I'm now having a lot more pain in my ankles. They are feeling very tight if that makes any sense. lol WIth EN, it seems like as soon as I start to feel better though, more nodules show up so I'm cautiously optimistic. It has already happened 3 times now!

I didn't get any new labs back, but I'm hoping tomorrow I'll at least get the blood count and metabolic panel. The ANA labs will probably be another week or 2. Those have to be sent out and take longer to get back.

let me know what happens with your doc's visit!