Re: CHRONIC MALAISE, FATIGUE

[Guest guest]

,

Do not let EN get you down further then you already are. It is unbearable at times. I think we all know that. Never give up!!! If you do, EN wins, and we that have EN are not quitters or losers. Take the time you need to rest, and I truly believe the rest will fall in place.

Keep you shins and chin up. Have faith that one day things will get better. Try not to stress out over it.

Debbie en 5-7

To: erythema_nodosum_group Sent: Fri, October 29, 2010 4:34:32 PMSubject: CHRONIC MALAISE, FATIGUE

Hi All, I am a "lurker" of this group--I have had EN since I was 13 (at least that was the first case we saw the doctor about and had biopsied) and it has recurred through the years. I am now 48. The worst flare up I have had over the years was about 4 years ago when I had back to back miscarriages...since then the lumps have surfaced a few times but not anywhere near the amount as my bout 4 years ago. Usually it is after strep or a virus. I had a feeling I was headed for EN trouble when I was bit by a tick in April and diagnosed with "Lone Star Tick Disease"---similar to Lymes but without the long term problems (for most) but of course I was expecting my EN to surface, and it did, and has been hanging around since about 6 weeks after the tick bite. Not bad, usually a lump at a time---BUT THE FATIGUE IS UNBEARABLE!!!! Consequently I have

poor eating habits (have for years) because I crave sugar to boost me up--I swear it is such a vicious cycle. My obesity doesn't help anything. So right now I have just had one bump fade away and after several weeks of not wanting to do anything but sleep (hard to do as a single mom with a 9 and 11 yr old---) I noticed another bump last night. AHA! That's why I was so tired these past few weeks... I get frustrated because our disease is such a silent disease--nobody can tell and it really eats at my confidence. When I go through phases of extreme fatigue I forget that it's probably the EN, and never cease to put myself down for my weight, my "laziness", my dread of going to work (I am a sub) and then the guilt if I don't pick up work because I don't feel good. Sometimes I just want to give up... Just felt like sharing with

people who understand...thanks for listening! Geracoulis(540)424.5324

To: erythema_nodosum_Group From: lnd_short@...Date: Fri, 29 Oct 2010 22:19:23 +0100Subject: Re: Re: Lofgren's Syndrome

Hi I have had en for 23 years I have had a flare up now since may I get pains in the bottom of my feet and also terrible pain in my ankles and also my calf muscles knees also my wrists and fingers, I am always tired but I do have a B12 deficiency and am also on folic acid for life I also have terrible headaches, my lumps dont always come up sometimes I get the pain without the lumps, and the area where the lumps come up is dented it seems that everytime the lumps come up a bit more of the tissue dissapears I wonder if anyone else has this problem. I have tried everything from anti inflamitories to steroids and nothing helps I find bed rest the best but this is not always possible when you have children. I hope you find a way of coping with your en all the best xx

Subject: Re: Lofgren's SyndromeTo: erythema_nodosum_Group Date: Friday, 29 October, 2010, 17:16

Hi ,My EN is present at this time I went to my family doctor she sent me to a dermatologist he did a biopsy and only found EN. I also had a chest exray and spine exray and they couldn't find anything. I also have had sore feet since June very painful heels and arch I can only wear certain shoes and braces at night to keep my feet from being flat at night. I thought this was Plantar faciitis also. I am going to take potassium Iodide to try to get rid of EN have you heard of this. I also have a very bloodshot left eye I think is related to En. I am using steroid drops for this. I tried steroid shots for the En helped for four days and the sores came back.I feel tired all the time no shortness of breath yet. I just hope I can go in remission again I have not had En for 20 years since my last pregnancy but I went through menopause at 30 and am 51 now. I have also gained a lot of weight always tired and hungry.

Kim > >> > Hi, I haven't been on here for a long time. Has anyone been tested for Lofgren's syndrome. I think this is what I have. I originally thought it was a b12 deficiency causing the EN but it came back again and again. > > > > I had just about given up when I started searching the web for my symptoms. I have terrible pains in my feet and I've thought it was plantar fasciitis, I have had breathing problems for over 15 years and a low grade fever often. I have had fatigue my entire life. Just going shopping could wear me out. > > > > I have an appointment with a pulmonologist. There really is no cure but I think I can learn to manage the inflammation in my body and prevent it. I just don't want to take Prednisone.>

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