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:
Hi Dana,
I came across your website through Google. Like you I'm a 27 yr old, sick since an early age (my grandma saw symptoms when I was 4yrs old and was always tired...).
Your blog made me cry, i didn't know (and somehow I did know) that they're people feeling like me.
It's my life goal as well to find out what's wrong with me. My kidneys are like Jekyll and Mr. Hyde, always symptoms, but never anything to be found.
People react happily when new tests show there is 'nothing' wrong with me, test results coming back negative make me cry. After all I'm not making this up! And no diagnosis is no solution :(. I think you'll understand.
Like you I had erythema nodosum and had to found out through Google myself,and tell the doctor because she didn't know! It hurt so much I could hardly walk and couldn't dance during my sister-in-laws wedding (I've uploaded a picture here: http://neenkster.com/wp-content/uploads/2012/01/erythema-nodosum.jpg, the edema indicates kidney problems again). I was then diagnosed with Sarcoid, but 2 months later the rheumatologist told me I was healed again.
I don't talk about my disease that much anymore, I just makes me cry and hardly anyone believes me anymore. After all test results don't show anything...??!! Even my best friend thought I was a hypochondriac.
I've always thought there was something with my kidneys, now reading your stories, I'm gonna try again to get my adrenal glands checked, because there seems no end to my fatique and lately I've been developing even more scary symptoms (pain in my arms, ankles). Well I good go on and on, I just want to give you a big ((((((HUG)))))). I know how you feel!
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.
Hmm i can't remember well enough, it was mostly my foot, ankle and maybe slightly below my calf, but i wouldn't say full leg.It was bad though, not to sound insulting to my grandma, but my feet looked so much likes hers! Like overnight they got 80yrs old! :-S
Not to discourage you but the edema took about a week before it went away. the pain continued to be there for a bit, the worst pain lasted 2 weeks (so 1 week before the edema and 1 week during).
Keep you feet/legs high as much as possible!!
I like you also almost prayed for a visible sign of illness, so the EN as painful as it was was somewhat a relief as well ("see, it's not in my head!") but oddly enough as badly as my legs looked and the swelling was my blood showed no sign of infection (white blood cells) or any problems with my kidneys (edema). utterly frustrating :(
My EN is a while ago (october 2010), I hope your diagnosis will be quicker then mine. Do you have any arm/wrist pain? The past weeks my nerves started to hurt and it's worsening by the day, now also making my arms/wrists (and sometimes ankles) extremely sore, tight muscles, i feel so much pressure.I have a doctors appointment next week,but i'm wondering if i can wait that long...
Did you end up going to the doctor again with your EN?
oh, now i've posted my comment, i realise that my calf was really really tense, actually it didn't show as much as my feet and ankles,but i would say it was full of edema! my calf was the part which made it really painful and hard for me to walk. the muscles seemed fully tight, all the time or something! hard to describe :( and then during the edema i got joint pain in my ankles and bigger toe, which is why i ended up with an RA specialist (but not a good one,i think, so i'm going to look for another one)
one more comment hehe :) the pictures,as terrible as they are, dont do the (increasing) edema justice! but during the edema my feet wouldnt fit into any pairs of shoes! i ended up taking the laces out of my sneakers, making them as wide as possible and then try to get my foot in. my feet would be covered in lace hole marks, because really those shoes were still very very tight! (but i had to wear something to get to the doctor :-/)
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'm so sorry you had such a terrible doctor! Wow, you should file a complaint against her or make sure to fill in a service-questionnaire if the hospital has any.
How's your edema and EN? You def. have more of a full leg edema then I had! She didn't check your kidneys again or something? Not even your heart. Wow unbelievable :(
I actually don't know much about my EN test results, I got the EN while living in my home country and doctors are much different (less knowledgeable and less open) there. So I don't know any of my lab results :( Just know that my blood work didn't show any inflammation,basically like yours.I didn't get any medicine,had to sit the EN out, all in all took 6 weeks, 2 of which extremely painful. My rheuma back home diagnosed me with sarcoid,showed my EN to colleagues to educate them,because they had never seen it before (the country is so small that only 2000 people have sarcoid, if diagnosed and not all experience EN), then 2 months later I was doing better and he declared me healed from Sarcoid (I don't think one can heal from it, it can be inactive but that's it, I thought?) and he said "you should be happy to get away with it this easily" which made me a bit mad, after all these years of undiagnosed complaints! :(
I'm now living in the States and getting much test done over. I was slow in replying because i wasn't/ain't doing too well (today was a better day). Got a sudden onset of nerve,joint and muscle pain. Perhaps even bone pain, I'm not sure, everything everywhere hurts (except torso,but incl. shoulders), it comes and goes during the day.It started off 2 weeks ago in my wrists and arms, and now it's everywhere :(, i can't drive without pain in my ankles, can't write,open bottles. But today was a good day,perhaps because i didn't do much :).
Internet tells me this could be anything from Lyme to Lupus to RA to adrenal glands. I booked an urgent dr. appointment Monday morning,because this is really scary! Still I'm not very optimistic they'll find something.
Did you get any new lab results back?
take care, don't let the stupid doctors get you down (but i know from experience they actually can :()
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!
Post a Comment