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.
13 comments:
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.
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.
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!
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!
Try histoplasmosis fungi or other fungi. Fungus can live in the air and soil, be transported by birds and bats, grow even in insulation, heating and cooling ducts. To me it looks like you may be getting lymphedema. My mom recently died of what the doctors say was biliary tract cancer that metastasized to her liver. She had had lymphedema for over 20 years. I think the cancer or fungus originated in her lymph system and then went throughout her body. Be careful on the the way they culture or biopsy things. A lot of time fungus won't show up on a culture unless it is stained a specific way. Get an immune function test against Candida, Con A, Pokeweed, and Tetanus. I came back with no immunity to candida, which my doctor told me not just to candida but ALL fungus and molds. My 15 year old daughter had the same test with the same results. My mom wouldn't have the test done, she was too stubborn. Said she didn't want the doctors going down the wrong path. Our vitamin D was also low. I was 17, my daughter 14, and my mom was 11. Vitamin D has everything to do with your immune system. My daughter was having migraines. She finds out she's deficient in D, starts taking it, and the migraines went away. For years my mom had migraines. And being deficient in Vitamin D would probably be why. My mom also had recurrent strep as a child and later on recurrent sinus infections, then pneumonia. All most likely strep related. Two of my pregnancies I had group B strep, another form of strep down in the nether region. I have 5 children all but 1 has had their tonsils and adenoids removed due to them being huge, recurrent strep and bacterial infections, and blocking their eustachian tubes so their ears can't drain properly. Again tonsils and adenoids apart of the immune system and lymphatic system. I had mine removed as an adult and started having more and more symptoms. Before it was just tonsilitis and sinus infections. Right now I have been on 2 rounds of antibiotics for a swollen lymphnode in my neck that is causing a lot of pain in my ear also. Left side of neck visibly swollen almost to collar bone. Being referred to an ent because it's not getting any better. So just watch out for the lymphatic system being the main cause and whether it could be vitamin def. related, strep related, or fungal related. Positive ANA has been linked to Celiac disease, which doctors are saying is gluten. It may be gluten, but think about how the grain is grown and stored. There have been research articles I have found from the early 1900's on the medical community and government being worried about mold and fungus in the crops back then. According to another article I found online, fungus has been shown to hide itself or trick it's host into not recognizing it. Who knows, but it's worth researching it.
Sorry to bug you again. My friend Steph, sees the same doctor I do, and she could not take a lot of supplements either. I'm talking vitamins and minerals. So the doctor tested her for some genetic mutation. Sure enough, she has it, and she has to take the methyl versions of the vitamins. I take vitamin D3 drops, not the pills. I don't know all your history, but hope to be of some help. I think God brought me to your page for a reason, as I saw the plethora of symptoms you had, most similar to mine when I first started having problems. I couldn't stand the heat. I had to be in the air all the time. Now I freeze my bum off. I used to be able to go outside in the dead of winter in a t-shirt and jacket. Not anymore ! I'm only 34 years old and my story started in 2004 after my c-section and tonsil and adenoidectomy. Both in the same year. My health started declining, and has been ever since. Mine started out with OCD, anxiety, wanting to sleep all the time, no sex drive, chronic yeast infections down yonder, the list goes on. Then a few years ago small panic attacks, heart palps, thrush in my mouth, fungal skin infections, etc. Last year I found a really good doctor. He's a former Professor for OSU Medicine. He is the only one in the US that I know of that uses genomic nutrition(eating by our genes) and he also started the WEE Protocol. He has a patient that flies from Louisiana to Ohio to see him a couple times a year. His name is Dr. Glen Aukerman. Best doctor I have met. Best bedside manner. He has helped cancer patients survive radiation and chemo while following his instructions. Helped countless others get healthy. He even has a small book "Better Health In 120 Days". The doctor doesn't promise you will be cured or fully better in 120 days, but that if you follow his advice to you, that you will start feeling better and your body will start healing. A lady I know that owns a little homestead store recommended him. She was seeing him for some problems. They are 7th Day Adventists. I'm not. They are still good Godly people. Hope this helps you or someone else going through the same things. Thank you for you blog, Dana. :)
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