Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 Dear Jackie, and Group, I used to get into very deep depressions too. The kind that lasted all weekend along in bed--too depressed to even walk to the TV set. The " I don't care and I don't care that I don't care " kind of funk. I had lots of these episodes in my 20's. I took the " YMI " process --a training that is no longer given. It involved hypnosis. I let my friend, the founder, Jim Huffsteckler put me through the YMI process and it took 2 hours. After I came out he told me I'd never be depressed again. Well that was arund 30 years ago, and it worked. I doubted it would, but the months turned to years and now I am pretty sure it did " cure " me, but you know, it really works by you " deprogramming your own brain " . Quite amazing for a one time treatment! It is quite a wonderful process, but alas, it never got off the ground and it was disbanned for lack of funds. I will forever be grateful to Jim Huffsteckler for his huge conribution to my life. Until that process is rediscovered (Jim invented it) I think it is great that some medications help those of us who need it. I say use whatever works. Have a great day! Love, > > Dear , > > > > God bless you!! I think most all of us can sympathize with you > and have had the same experiences as you. Your long tale of seeing > a " rheumo " and then a " dermo " and back to the GP who sent you to > another rheumo who sent you to another dermo and finally to > a " neuro " .......wow!!!! It's like being in a revolving door and you > can't get out, right? > > > > These doctors all say the same things, it seems, regardless who or > where they are. Just about a month ago my " dermo " told me he wanted > to take a biopsy.....when I have another big flare-up! Oh, what a > joy to look forward to! I've never had one done, and I don't really > think it will be worth the time, pain or money involved. They will > probably find nothing and say it's EN or they will find it is EN and > say it's EN. Same result! > > > > I've tried many of the medications you mentioned. I also suffer > from fibromyalgia which causes me much muscle pain and stiffness. > I've tried many nonsteroidal anti-inflammatory drugs, but I've found > either ibuprofen or naprosyn are the best for the money. I also > take Ultram, which is a little differenent than the Ultracet, when I > need something extra for the pain. I'm doing pretty well with this > combination but there are times when I'd like to have some Demerol > or something harder too. > > > > When I have a really bad flare-up, I usually take a 6-day course > of Prednisone, and the dermo prescribed a steroidal ointment called > Cyclocort, which I've found to work well. I slather it on and then > wrap my ankles in plastic wrap. Oh, how sexy!!! haha But it does > help start the healing process and the lumps start waning. > > > > I once took Neurontin per a psychiatrist's suggestion, but it > didn't really make much difference with my fibro or anything else. > I finally gave up on the " psycho " .......hehehe.......or maybe he > gave up on me. Anyway........the answer wasn't there either. > > > > I usually have two bad flare-ups of EN a year, but last year it > started in May and never really let up, just kept coming back worse > then ever until a couple of months ago. Right now I'm in pretty > good remission, though you can still tell where the lumps were and I > can still feel one way down deep under the skin. But I'm not > complaining. I'll just be thankful for six months remission like I > used to have. > > > > I have burning and itching, as well as swollen ankles and > throbbing feet if I stay on them much when I have the flare-ups. A > couple of times I have felt like I was going to go crazy if I didn't > get some relief. That's when I got the Cyclocort. I also take > Ativan as needed for anxiety, and I take Celexa for depression. > It's nothing to be ashamed of. How could anyone suffer as we do and > not feel depressed at times? > > > > My personal feeling is that after a certain point you just have to > look elsewhere for answers and to some extent accept the life you > have and try to be thankful things are not worse. The doctors know > so little about EN, but they are out to make money, so they will > keep you going and coming back and referring and taking your money > as long as you will let them. I would sincerely suggest that you > talk with your mother, the naturopath, and see if she has any > suggestions. Several of us have tried vitamins, herbs and other > alternative medicines, some with much success. I don't think any > idea is too ridiculous to try as long as it doesn't hurt you. That > is part of what this group is about: sharing our experiences, > feelings and treatments. > > > > By the way, I am an A-type personality too, and the restrictions > that both fibro and EN have put on me sometimes make me feel > absolutely useless, especially when I try to compare myself to my > younger days or to others who seem to have boundless energy. I > often feel that other people see me as lazy too. That is a BIG no- > no. I keep striving to do what I can and realizing that I do make a > difference in my family's lives. We just have to keep pushing. If > we stop, then it's all over. > > > > Welcome to the group, and I look forward to hearing further from > you. > > > > Jackie > > > > > > > > > > New Member > > > > > > Hello Everyone, > > > > I am a new member. I heard about the site from who just > > recently joined another Pann site that I am a member of. I have > had > > Erythema Nodosum for about 9 years, beginning when I was about > 15 > > years old. I've had flare ups about 5-6 times since then. When > it > > occurs, I have never actually gotten ulcers or any type of > drainage > > though. I'm lucky for that. > > > > In May of 2002 I began to have another flare though. This time > it > > not only looked like bruises and deep reddness on my shins but I > > began having alot of pain. I went to my Gen. Doc who referred > me to > > a rheumotologist. The rheumo referred me to a dermo who did a > punch > > biopsy of a nodule. The results did not show anything and they > took > > me off of the ultracet and prednisone which was not appearing to > > help anyways. They suggested that I go back to my Gen Doc or > when I > > had different symptoms to come back and see them. By this time I > had > > been in the ER for severe pain attacks during the months of June > and > > July. The only thing that helped during these attacks was a > shot of > > demerol or dilaudid. > > > > I went back to my Gen doc at the beginning of August. At this > time I > > was beginning to suddenly start to feel better. He referred me > to > > the head of Rheumatology at the University of Chgo. I waited to > see > > if I was going into remission - I did. It came back with a > > vengeance around December though - the pain 2-fold and some of > the > > redness/bruising. I took the verbal referral and made an appt > at > > the U of C. My new rheumo doctor reffered me to Dermatology > again > > for a biopsy. They didn't do one right away though. They > couldn't > > find a 'specimin' that they thought was large enough and my skin > > tone was almost normal again. The problem was that I was in So > So > > much pain and I could feel the tiny nodules on my shins but it > was > > hard for them too. I suppose it was easier for me to 'feel' out > the > > nodules when I'm the one feeling the pain when I touch one. Any > type > > of pressure on my legs put me in tears. I don't even let my > kids sit > > on my lap because I'm afraid one of their legs will hit my > shins. > > At this time they put me on a high dosage of Ultram for the pain. > > > > During this process my dermo and rheumo sent me to a neurologist > who > > ruled out any apparent nerve damage. They did an EMG and > several > > other tests. The neuro didn't rule out that I could be having > > problems with the tips of the nerves (or the fine nerves) which > > these tests can't measure. My neuro and dermo put me on > Neurontin > > which was to help with pain also. > > > > I continued to see my dermo and rheumo. I began getting an > > irritating red/purpilish scaly and kinda blistering circular > patches > > on my right ankle and up my leg a little. My dermo did a biopsy > and > > confirmed granuloma anulare. They said there was no cure and > this > > was not related to whatever the other problem is that I was > having. > > I figured as much because this is itchy and tender but not > severly > > painful. > > > > Then in June I found a sizable lump on the near back of my calf > > which was extremely painful. Oddly this was the first lump that > I > > got that wasn't on my shins but then again it was the only lump > that > > the docs thought was sizable enough to get a good biopsy > result. > > They did an incisional biopsy this time and went down about an > inch > > to get it all. I was diagnosed with lipodermatosclerosis. My > dermo > > believes that this is a result of the EN though. Lipoderma can > > cause alot of pain but the typical case of lipoderma is the > vascualr > > type where scar tissue builds up in one's veins. This is not so > > much in my veins but it's depositing scar tissue in my fat and > > different fragmenting sizes of clots in my microvascular system. > > They referred me to a pain specialist at that point and began > doing > > alot of other blood tests. They put me on aasprin and a > circulatory > > drug (Trental) which made me vomit and they took me off of. > > > > Their doing some research with my 'S' type proteins. I have a > lack > > of these I guess. They've asked for my parents to come in so > that > > they can do more studies ..... > > > > They want me to stay off of my feet as much as possilbe and sent > > paperwork in to get me a handicap parking sticker. They gave me > a > > cream to apply which is supposed to sort of 'numb my legs'. > This > > doesn't appear to be helping much. My pain doc gave me an addt. > > supply of pain meds for when I need something extra - vicodin - > > which doesn't help. Sometimes the pain is so bad it's hard for > me > > to fall asleep - so she gave me ****** to help me sleep. > > > > I just want the pain to go away and have my normal life back. I > > feel so bad that I can't run around the back yard with my kids > and > > bounce them on my knees. It always feels like I have literal > > bruises on my legs. You know what a bruise feels like and when > you > > walk and stretch the bruise it hurts too. The pain is sometimes > > throbbing and all over (but only below my knees) and other times > > it's searing and like a knife or like someone's beating my shins > > with a baseball bat. > > > > Does anyone have symptoms like these - physical or pain wise? > > Sometimes I feel so depressed and wonder if I should ask my doc > for > > an anti-depressant. My mother is a natropath and so it's made > our > > relationship more difficult. She doesn't believe in me going to > > medical docs, taking meds, biopsy's etc... I told her that if > she > > was in the amount of pain that I'm in every single day of my > life > > she would understand. Unfortunatly, the pain meds don't even > take > > all the pain away. They dull it enough for me to be able to > > concentrate on other things though. Sometimes they don't help > well > > regardless. The morning is the hardest because my meds have > worn > > off over night and it physically hurts just to make it out of > bed. > > I'm sure other's feel depressed and tired too - right? Fatigue > is > > another big factor. I am so an 'A' type personality so I am > used to > > going and going and pushing myself. Compared to what I used to > do I > > feel lazy or useless because I can't do it all by myself > anymore - > > and I still want to. > > > > > > This was really long - sorry for that. I've started reading > other > > messages and am going to continue. I've already got a list of > items > > I'm going to talk with my dr about next visit (I see her every 2 > > wks). I'm so tired and must rest. > > > > Love, light, and happiness, > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Dear Jackie, We've discussed depression on this group too. Losing ones health is similar to coming face to face with death according to Kubler-Ross. One goes through all the stages of death. With EN it is a bit different. There are remissions and one can get back to a healthy state. I try to live one day at a time, and I am thankful for all the good I still have in my life. Some people think that living with illness takes courage. I look around and see so many who are much worse off then I am. They are the courageous ones! Attitude is everything. I can't change the circumstances or the situation much of the time, but I can change my perspective and how I look at those circumstances. In that way EN can be a gift. It reminds me to live for today and appreciate it. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 It's perfectly normal to mourn the seeming loss of self, it's an official greiving process and can be dealth with in similar ways, whatever those are... lol well We never lose ourselves, we merely change form to experience various stages of self in our journeys that enrich the soul and strengthen the spirit and I sound so corny right now, lol. Okay time for bed, Click Here! Enter the MetaPhorum! Quote Link to comment Share on other sites More sharing options...
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