Re: (unknown)

[Guest guest]

Tina,

Weirdly my situation is pretty much the reverse of yours! If I am sitting for any length of time, say more than half an hour, my right foot swells and the pain on standing gets worse. BUT, a couple of minutes walking and the pain subsides.

I am still at work (only part time thank goodness) because I cannot very well ask the doctor to sign me off work when I am charging about organising my dad's funeral. Today was my first full day in the office for a while and it's just as well I have my own room: I can take my shoes off, put cream on the lumps, walk about whenever I need to.

You must be bored out of your skull off work for so long, even though you are so unwell.

Regards Nina Baker

1st EN outbreak from early April 2010, awaiting tests for cause. Mainly on right leg but also left knee and both arms

Subject: (unknown)To: erythema_nodosum_Group Date: Monday, 17 May, 2010, 19:54

I've only been a member a short time. I was diagnosed with EN by a rheumatologist. There were no biopsies done and I only had one nodule. The only pain I have left since the swelling in my ankles went away is in my feet. I can only walk on them for about an hour and then I'm done. I have to come home and prop them up. Is this common for EN or should I have a second opinion? I have been off work since Jan. will the pain ease eventually so maybe I can get back to work? Or is this part of the unknowns? ------------------------------------You can help Erythema Nodosum Research. Just go to http://www.goodsearch.com/ and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. NOW you can also GoodShop for

Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

[Guest guest]

Hello Tina and Nina,I have EN lumps on my enkels and one leg. I can't stand without pain. My first time of EN was in January 2010. It went away slowly and I could walk a bit in the house. My knee was still swollen from artritis, wich I had in the same period. The hospital gave me medicine and then the EN came back! I can't walk now, I'm in bed all day (for a week now). I come out only to go to the toilet. When i'm to long their, my feet start swollen...In the morning, night and evening I need painkillers otherwise I cannot stand on my feet at all. During the day it is a bit better. I think this has to do that inflamation is worse during the night (my fysiotherapist told me). I haven't been out the house for all 2010, only just in the garden I'm waiting now till the pain and swollen heavy feet go away, so I will be able to 'walk' again. If someone has some advice for us,

please... By the way: how is it possible that you can put cream on the lumps, Nina? The only thing my lumps can stand is a cold/wet cloth!Well, it seems to be different for all of us. I hope you can soon walk a bit more, Tina. And for Nina: that you can sit for a longer time :)Greetings,G RSent from my iPod

Tina,

Weirdly my situation is pretty much the reverse of yours! If I am sitting for any length of time, say more than half an hour, my right foot swells and the pain on standing gets worse. BUT, a couple of minutes walking and the pain subsides.

I am still at work (only part time thank goodness) because I cannot very well ask the doctor to sign me off work when I am charging about organising my dad's funeral. Today was my first full day in the office for a while and it's just as well I have my own room: I can take my shoes off, put cream on the lumps, walk about whenever I need to.

You must be bored out of your skull off work for so long, even though you are so unwell.

Regards Nina Baker

1st EN outbreak from early April 2010, awaiting tests for cause. Mainly on right leg but also left knee and both arms

From: Tina Thornhill <tinathornhill_diaz>Subject: (unknown)To: erythema_nodosum_Group Date: Monday, 17 May, 2010, 19:54

I've only been a member a short time. I was diagnosed with EN by a rheumatologist. There were no biopsies done and I only had one nodule. The only pain I have left since the swelling in my ankles went away is in my feet. I can only walk on them for about an hour and then I'm done. I have to come home and prop them up. Is this common for EN or should I have a second opinion? I have been off work since Jan. will the pain ease eventually so maybe I can get back to work? Or is this part of the unknowns? ------------------------------------You can help Erythema Nodosum Research. Just go to http://www.goodsearch.com/ and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. NOW you

can also GoodShop for

Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

[Guest guest]

Tina,

I have a swollen feeling in my right ankle area. I was told I have plantar facitias in my feet, too high of arches. I know I got that spelling wrong. I was doing a ton of walking at work in a warehouse, on my feet for almost 7 hours a day, back and forth, round and round with no mats. No wonder I was burnt out!

The motto of this group is "Shins Up!" So rest when you can, take time for yourself to rest. You will be able to return to work, I did. But I had to learn the most important lesson of all, the one I just wrote about. Rest, put the feet up and relax.

Debbie en 5-7 Oh look at that it is 2 years this month since DX'd with it. How could deal with this for so much longer is a testament to her.

We need to get funding for a study of this. Who knows how many more have this? Got to get it out there.

To: erythema_nodosum_Group Sent: Mon, May 17, 2010 11:54:58 AMSubject: (unknown)

I've only been a member a short time. I was diagnosed with EN by a rheumatologist. There were no biopsies done and I only had one nodule. The only pain I have left since the swelling in my ankles went away is in my feet. I can only walk on them for about an hour and then I'm done. I have to come home and prop them up. Is this common for EN or should I have a second opinion? I have been off work since Jan. will the pain ease eventually so maybe I can get back to work? Or is this part of the unknowns?

[Guest guest]

Hi GR,

The cream is essential as the swelling has caused flaky skin on my ankle in particular and I am terrified of the skin splitting. I use a totally neutral aqueous cream. I use cold compresses too - wet cloths and a freezer pack wrapped in a teatowel.

The doc said I could use ibuprofen for painrelief but it is known to interfere with the medications for high blood pressure, so I havent used it much, as I think it prevents my diuretics from working and encourages the oedema swelling in my right foot. The pain is bad but not unendurable because I know it will ease the more I walk. Just that on first getting out of bed there is this feeeling of my leg being pumped full of hot barbed wire.

Sorry to hear you have been confined to the house for so long. Your garden must be a pleasure to you. As we live on the first floor it is several flights of stairs to get to our garden. If this EN looks set to stay I am thinking we might have to move to a house or bungalow.

Regards Nina Baker

From: Tina Thornhill <tinathornhill_ diazyahoo (DOT) com>Subject: [erythema_nodosum_ Group] (unknown)To: erythema_nodosum_ Group Date: Monday, 17 May, 2010, 19:54

I've only been a member a short time. I was diagnosed with EN by a rheumatologist. There were no biopsies done and I only had one nodule. The only pain I have left since the swelling in my ankles went away is in my feet. I can only walk on them for about an hour and then I'm done. I have to come home and prop them up. Is this common for EN or should I have a second opinion? I have been off work since Jan. will the pain ease eventually so maybe I can get back to work? Or is this part of the unknowns? ------------ --------- --------- ------You can help Erythema Nodosum Research. Just go to http://www.goodsear ch.com/ and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. NOW you can also GoodShop for

Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

[Guest guest]

Hello Nina,I recognize the flaky skin... The skin of my ankle did burst and now there is a soft thin "babyskin'. But I never could cream my ankle...The cold/wet compresses are fine to it.I may not have ibuprofen and use paracetamol when the pain is bad. Otherwise I want to use as less medicine as possible.The garden.... Well, I'm looking at it out of bed now for 1,5-2 weeks (new lumps). Today it goes a bit better and could even 'walk' to the shower. So I hope next week (?) downstairs.... I want some fresh air :)I hope your EN goes away so you don't need to move house. By the way, how do I know if I have acute EN, or chronical?? The first outbreak was in January. The second now....Greetings, G RSent from my iPodOn 18 May

2010, at 10:59, NINA BAKER <nina.baker1@... om> wrote:

Hi GR,

The cream is essential as the swelling has caused flaky skin on my ankle in particular and I am terrified of the skin splitting. I use a totally neutral aqueous cream. I use cold compresses too - wet cloths and a freezer pack wrapped in a teatowel.

The doc said I could use ibuprofen for painrelief but it is known to interfere with the medications for high blood pressure, so I havent used it much, as I think it prevents my diuretics from working and encourages the oedema swelling in my right foot. The pain is bad but not unendurable because I know it will ease the more I walk. Just that on first getting out of bed there is this feeeling of my leg being pumped full of hot barbed wire.

Sorry to hear you have been confined to the house for so long. Your garden must be a pleasure to you. As we live on the first floor it is several flights of stairs to get to our garden. If this EN looks set to stay I am thinking we might have to move to a house or bungalow.

Regards Nina Baker

From: Tina Thornhill <tinathornhill_ diazyahoo (DOT) com>Subject: [erythema_nodosum_ Group] (unknown)To: erythema_nodosum_ Group Date: Monday, 17 May, 2010, 19:54

I've only been a member a short time. I was diagnosed with EN by a rheumatologist. There were no biopsies done and I only had one nodule. The only pain I have left since the swelling in my ankles went away is in my feet. I can only walk on them for about an hour and then I'm done. I have to come home and prop them up. Is this common for EN or should I have a second opinion? I have been off work since Jan. will the pain ease eventually so maybe I can get back to work? Or is this part of the unknowns? ------------ --------- --------- ------You can help Erythema Nodosum Research. Just go to http://www.goodsear ch.com/ and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny

will be donated to EN Research. NOW you can also GoodShop for

Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

[Guest guest]

I've been using Vitalzym systemic enzymes for my swelling and pain and it works great at ridding the body of fibrin that causes inflammation and arthritis and numerous disorders. There are different systemic enzymes that focus on different issues. I like Vitalzym though I have heard great stuff about Wobenzym. Doses vary. I just love systemic enzymes and what they have done for my health.I agree, taking pharm pain meds, over time, is not good for your system, kidneys and your immune system. That is why I researched Systemic Enzymes and their benefits. Also look into: your diet. Some gluten foods are a big contributor, have your adrenals checked for fatigue (saliva test- blood tests are inaccurate), and maybe your hormone levels. Sometimes, feet are associated with estrogen dominance, for some weird reason. I used to have pain in my feet, especially my heels. When I had my estrogen checked and learned I was crazy high and removed estrogen bearing foods from my diet the pain went away. Sorry about your pain. ML GemmillEN 1975 Hi everyone. It's been awhile since I last wrote. I was diagnosed with EN in Jan. I've seen podiatrist and rhuematologist. I've been taking Nuerotin , prednisone, methotrexate, folic acid and metanx. The swelling is down, but I still cant be on my feet for more than an hour,if that. I havent been able to work but the doctor told my medical dept that I will be able to return by the end of the year. Unless she has a miracle drug, I dont see how. She is now treating me for some kind of arthritis even though all the test are coming back negative. I'm going for a second opinion to see if anyone can help with the pain. I dont want to take pain pills all the time. And I dont like being off work. Does anyone have any ideas that may help the pain in my feet?

[Guest guest]

I can only suggest that you hang in there Dawn, times are changing a new step forwards won't be far off, better we all take that path together.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Thu, 12 Aug 2010 06:04:08 -0700 (PDT)To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: (unknown) I have been suffering for many many years as well. I occasionally visit the site now because I got pretty down for a while with the liklihood of no cure. I take Zoloft, which helps a little. Maybe controls me enough to actually get out of the room! I like you cannot escape some situations, like my secretary popping gum, smacking on food, singing or humming at a low whisper. I too felt crazy since I was probably 10. The sounds bother me so much that I am so tense resulting in many headaches etc... At best I try my IPOD or something to block out the noise. Noise machine at night. Can't sleep with my husband because of his snoring. Makes life miserable. My biggest fear is that my girls will have this same issue. Not sure what else there is to do. Dawn.

[Guest guest]

I can only suggest that you hang in there Dawn, times are changing a new step forwards won't be far off, better we all take that path together.Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Thu, 12 Aug 2010 06:04:08 -0700 (PDT)To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: (unknown) I have been suffering for many many years as well. I occasionally visit the site now because I got pretty down for a while with the liklihood of no cure. I take Zoloft, which helps a little. Maybe controls me enough to actually get out of the room! I like you cannot escape some situations, like my secretary popping gum, smacking on food, singing or humming at a low whisper. I too felt crazy since I was probably 10. The sounds bother me so much that I am so tense resulting in many headaches etc... At best I try my IPOD or something to block out the noise. Noise machine at night. Can't sleep with my husband because of his snoring. Makes life miserable. My biggest fear is that my girls will have this same issue. Not sure what else there is to do. Dawn.

[Guest guest]

I can completely understand what you go through. This past summer I called the

police 6 times about a neighbour blasting his music so loud I could hear it not

only outside in my yard, but inside with all the windows closed.

I kept anticipating the noise to start at any moment and was unable to relax. I

walked around angry all the time and even considered selling my house and

moving. After receiving two fines from the police and having to go to court,

the guy has finally stopped doing it. I say do what you have to do to make

other people realize how inconsiderate they are being. Tell your landlord if

you rent, tell the police if you own. Hopefully if your neighbours understand

that their noise is bothering you then they will stop.

I don't know how to make the anticipation of annoying sounds go away. Once it

becomes a chronic problem like noise from neighbours, I start to obsess about it

and can't stop thinking about it all the time. The part that makes me so upset

is that none of my other neighbours complained about this guy and didn't seem to

have a problem with him blasting his music all the time. I just don't

understand because to me the volume was so beyond ridiculous I can't see how it

wouldn't bother everyone.

>

>

>

> Subject: (unknown)

> To: Soundsensitivity

> Date: Monday, November 22, 2010, 3:10 PM

>

>

>  

>

>

>

>

>

>

>

>

> Terry, I do, too.  I finally signed a complaint against a bar on the main

strip (I am across the street, five houses down on a side street), because they

blast bass and it comes in my house, right through the walls and floorboards. 

Last week I signed a complaint, and this last Friday, too.  The police dept

must think im a crazy woman because last friday they sent 5 cops to my house.

>  I printed off an article from residents of Ft.Lauderdale, Fl, who

were fighting the bars for making so much noise.  One resident said that even

though their homes have thick, hurricane-resistant glass windows, the bass still

comes through because it travels through building ventilation systems.

>  So i know exactly how you feel.

>

[Guest guest]

I can completely understand what you go through. This past summer I called the

police 6 times about a neighbour blasting his music so loud I could hear it not

only outside in my yard, but inside with all the windows closed.

I kept anticipating the noise to start at any moment and was unable to relax. I

walked around angry all the time and even considered selling my house and

moving. After receiving two fines from the police and having to go to court,

the guy has finally stopped doing it. I say do what you have to do to make

other people realize how inconsiderate they are being. Tell your landlord if

you rent, tell the police if you own. Hopefully if your neighbours understand

that their noise is bothering you then they will stop.

I don't know how to make the anticipation of annoying sounds go away. Once it

becomes a chronic problem like noise from neighbours, I start to obsess about it

and can't stop thinking about it all the time. The part that makes me so upset

is that none of my other neighbours complained about this guy and didn't seem to

have a problem with him blasting his music all the time. I just don't

understand because to me the volume was so beyond ridiculous I can't see how it

wouldn't bother everyone.

>

>

>

> Subject: (unknown)

> To: Soundsensitivity

> Date: Monday, November 22, 2010, 3:10 PM

>

>

>  

>

>

>

>

>

>

>

>

> Terry, I do, too.  I finally signed a complaint against a bar on the main

strip (I am across the street, five houses down on a side street), because they

blast bass and it comes in my house, right through the walls and floorboards. 

Last week I signed a complaint, and this last Friday, too.  The police dept

must think im a crazy woman because last friday they sent 5 cops to my house.

>  I printed off an article from residents of Ft.Lauderdale, Fl, who

were fighting the bars for making so much noise.  One resident said that even

though their homes have thick, hurricane-resistant glass windows, the bass still

comes through because it travels through building ventilation systems.

>  So i know exactly how you feel.

>

[Guest guest]

I can completely understand what you go through. This past summer I called the

police 6 times about a neighbour blasting his music so loud I could hear it not

only outside in my yard, but inside with all the windows closed.

I kept anticipating the noise to start at any moment and was unable to relax. I

walked around angry all the time and even considered selling my house and

moving. After receiving two fines from the police and having to go to court,

the guy has finally stopped doing it. I say do what you have to do to make

other people realize how inconsiderate they are being. Tell your landlord if

you rent, tell the police if you own. Hopefully if your neighbours understand

that their noise is bothering you then they will stop.

I don't know how to make the anticipation of annoying sounds go away. Once it

becomes a chronic problem like noise from neighbours, I start to obsess about it

and can't stop thinking about it all the time. The part that makes me so upset

is that none of my other neighbours complained about this guy and didn't seem to

have a problem with him blasting his music all the time. I just don't

understand because to me the volume was so beyond ridiculous I can't see how it

wouldn't bother everyone.

>

>

>

> Subject: (unknown)

> To: Soundsensitivity

> Date: Monday, November 22, 2010, 3:10 PM

>

>

>  

>

>

>

>

>

>

>

>

> Terry, I do, too.  I finally signed a complaint against a bar on the main

strip (I am across the street, five houses down on a side street), because they

blast bass and it comes in my house, right through the walls and floorboards. 

Last week I signed a complaint, and this last Friday, too.  The police dept

must think im a crazy woman because last friday they sent 5 cops to my house.

>  I printed off an article from residents of Ft.Lauderdale, Fl, who

were fighting the bars for making so much noise.  One resident said that even

though their homes have thick, hurricane-resistant glass windows, the bass still

comes through because it travels through building ventilation systems.

>  So i know exactly how you feel.

>

[Guest guest]

Jan,

Still have my ap. but do have an 'extra' spleen. Go figure. Drs. not too worried about it. Perhaps a piece got 'broken' off by an injury.

Debbie en 5-7

To: erythema_nodosum_Group Sent: Sun, January 30, 2011 10:37:42 AMSubject: (unknown)

Hi Trudi and all, I too get awful pains in my hi and along what feels like the length of my thigh bone when flare ups are really bad. It will wake me up in the night with the pain through to the bone and I will change sides for a while till other side starts up then change again, thankfully this is mainly when flares are at their worst and I notice morning stiffness and rising after sitting for a while etc is much worser at these times too.

I have a new gp as sick of being dismissed by old one and will see how he does with all of this, he seems to be more interested in any case as have been complaigning of several things for years at old one and this one orderred a series of blood tests as thought things need to be looked into and not ignored and have had first lot of blood tests come back to say my liver functions are out and will have to go have ultrasounds this weeks.

I have a curious question for anyone who is reading, have you had your appendix's out by any chance, just wondering, I had mine out as a child.

kind regards all, Jan (Western australia)

[Guest guest]

Hi Jan,

Wow your description of your hips is identical to what I feel, especially having to keep changing sides and rolling over of a night, it does make for a good nights sleep. You also describe the stiffness/soreness worse in the mornings and when you have sat for a while, and that describe me as well. In answer to your question, I had my appendix out when I was eight years old. I am very unwell this morning, nodules multiplying, raised, swollen, red, hot and sore and feel I have a temperature

Trudi

(unknown)

Hi Trudi and all, I too get awful pains in my hi and along what feels like the length of my thigh bone when flare ups are really bad. It will wake me up in the night with the pain through to the bone and I will change sides for a while till other side starts up then change again, thankfully this is mainly when flares are at their worst and I notice morning stiffness and rising after sitting for a while etc is much worser at these times too.

I have a new gp as sick of being dismissed by old one and will see how he does with all of this, he seems to be more interested in any case as have been complaigning of several things for years at old one and this one orderred a series of blood tests as thought things need to be looked into and not ignored and have had first lot of blood tests come back to say my liver functions are out and will have to go have ultrasounds this weeks.

I have a curious question for anyone who is reading, have you had your appendix's out by any chance, just wondering, I had mine out as a child.

kind regards all, Jan (Western australia)

[Guest guest]

Hello Jan (and All)

Yes Jan, to all of what you have written. I have deteriorated over the last five days and am totally immobile at the moment. I gave in yesterday and took 5mg of prednisone, and although still terribly sore, can walk this morning, it also seems the swelling is less, but that could just be that my legs have been elevated for 12 hours. The reason I gave into the pred yesterday was because the pain bought me to tears, and the total frustration at not being able to move or do anything got on top of me. I have been through a very emotional time since Christmas, with my relationship of four years ending very suddenly and unexpectedly. The reason given for the parting of the ways? He couldn't cope with my illness any longer. I guess each and everyone of you would understand how difficult it was to hear that, which is why, out of temper and self loathing, I stopped the steroids abruptly. I guess I am now paying for such a stupid decision and the reality of everything has now hit me. Although we never lived together (thankfully), and I quite like my solitude, being alone and ill is very isolating. My children have been my rock, and I will come through this. It is very difficult having to rely on people, usually I am fiercely independent, and now need help for basic things. I am focusing on one thing at the moment, watching how fast my grass is growing in this amazingly volatile Queensland weather, and I am going to be the one who mows the lawn.........how is that for a goal?? Being outdoors in the garden is my favourite thing to do, especially when I having things on my mind, so I am aiming to get out there and a soon as I possibly can! So if any on of you can share 'quick fix' hints and tips, I will be most grateful

Trudi

(unknown)

Hi trudi and all, I totally understand the pain and ordeal of making yourself put that first weight on my feet in the morning and your toilet trip, I lie and jig , then sit on the side of the bed and jig, trying to get my ankle to bend up and down so as can even try to weight bear. then its the dreaded toilet trip down the hall. I call it dreaded as the pain is excruitiating and as you said , really have to force myself up out of desperation to go to the toilet. (sadly often dont make it so is totally dreaded ) after the trip can walk slightly better not much though and next stop is meds for pain and coffee, rwst while that takes effect and then make myself get organised and move ( slightly frees up but if stay sitting will lock all including hips, tailbone, knees and ankles) So spend day alternating positions some up some down) Very tired as dont get night sleep due to hip pain as we said earlier and also fatigued. Fall asleep at a drop of a hat in chair during the day though, wake up from stiffness hurting needing to move then nodd off again,. ( many coffees spilt by nodding holding them, lol) .Do you get pain in and around your tail/tailbone area too? esp when shifting weight, or grtting upfrom sitting?

I asked about the appendix as had mine out at about 8 yrs of age too, funny co incidence. They say the appendix has no use but was curious as thought that perhaps it did if we all didnt have one anymore, clutching at straws probably though.

I have swollen up heaps tonight and the itch is driving me crazy, can feel new tight bumps adding to the old ones, had a funny throat the other day so seems like a fresh outbreak on top again, feel really flat and overheating.The skin on my legs feels so tight it feels like it wants to burst.With little piggy toes out at the bottom... uuuggghhh,

Wish I could get them to give me some pred, I really need a break from this even if only for a short time. Even just long enough to get on top of some of the mess at home as it adds up when swelling and stiffness makes it too painful to walk, cant even fit my super sized crocs on tonight.

Hope you get some relief soon, all the best Jan (over in western australia)

[Guest guest]

Trudi and Jan, sorry to hear you're not good, hope it gets better soon. Jan, I was sooooo pleased to hear that someone else has the intense itch as well, it seems to have baffled the specialists - EN or EM isn't supposed to be intensly itchy, but mine is. I asked my specialist about the hip pain, and he reckons it has to do with the fluid build up in the joints (hence the joint pain) and the hip is the biggest joint - hence most pain. My specialist is really frustrated at the lack of research into this disease, he's seeing a lot more cases in the past 10 yrs or so. since it's supposed to be a reaction (hypersensitivity) to mainly chemicals or medications - maybe it's our changing society with lots of chemicals in our food/environment etc and increasing use of drugs. His first thing when you

see him is to determine what the trigger is (even if it takes a long time) and most doctors can't be bothered - they just give us cortisone.

Oh well, one day maybe.....

Dale

To: erythema_nodosum_Group Sent: Fri, 4 February, 2011 12:17:34 PMSubject: Re: (unknown)

Hello Jan (and All)

Yes Jan, to all of what you have written. I have deteriorated over the last five days and am totally immobile at the moment. I gave in yesterday and took 5mg of prednisone, and although still terribly sore, can walk this morning, it also seems the swelling is less, but that could just be that my legs have been elevated for 12 hours. The reason I gave into the pred yesterday was because the pain bought me to tears, and the total frustration at not being able to move or do anything got on top of me. I have been through a very emotional time since Christmas, with my relationship of four years ending very suddenly and unexpectedly. The reason given for the parting of the ways? He couldn't cope with my illness any longer. I guess each and everyone of you would understand how difficult it was to hear that, which is why, out of temper and self loathing, I stopped the steroids

abruptly. I guess I am now paying for such a stupid decision and the reality of everything has now hit me. Although we never lived together (thankfully), and I quite like my solitude, being alone and ill is very isolating. My children have been my rock, and I will come through this. It is very difficult having to rely on people, usually I am fiercely independent, and now need help for basic things. I am focusing on one thing at the moment, watching how fast my grass is growing in this amazingly volatile Queensland weather, and I am going to be the one who mows the lawn.........how is that for a goal?? Being outdoors in the garden is my favourite thing to do, especially when I having things on my mind, so I am aiming to get out there and a soon as I possibly can! So if any on of you can share 'quick fix' hints and tips, I will be most grateful

Trudi

(unknown)

Hi trudi and all, I totally understand the pain and ordeal of making yourself put that first weight on my feet in the morning and your toilet trip, I lie and jig , then sit on the side of the bed and jig, trying to get my ankle to bend up and down so as can even try to weight bear. then its the dreaded toilet trip down the hall. I call it dreaded as the pain is excruitiating and as you said , really have to force myself up out of desperation to go to the toilet. (sadly often dont make it so is totally dreaded ) after the trip can walk slightly better not much though and next stop is meds for pain and coffee, rwst while that takes effect and then make myself get organised and move ( slightly frees up but if stay sitting will lock all including hips, tailbone, knees and ankles) So spend day alternating positions some up some down) Very tired as dont get night sleep due to hip pain as we said earlier and also fatigued. Fall asleep at a drop of a hat in

chair during the day though, wake up from stiffness hurting needing to move then nodd off again,. ( many coffees spilt by nodding holding them, lol) .Do you get pain in and around your tail/tailbone area too? esp when shifting weight, or grtting upfrom sitting?

I asked about the appendix as had mine out at about 8 yrs of age too, funny co incidence. They say the appendix has no use but was curious as thought that perhaps it did if we all didnt have one anymore, clutching at straws probably though.

I have swollen up heaps tonight and the itch is driving me crazy, can feel new tight bumps adding to the old ones, had a funny throat the other day so seems like a fresh outbreak on top again, feel really flat and overheating.The skin on my legs feels so tight it feels like it wants to burst.With little piggy toes out at the bottom... uuuggghhh,

Wish I could get them to give me some pred, I really need a break from this even if only for a short time. Even just long enough to get on top of some of the mess at home as it adds up when swelling and stiffness makes it too painful to walk, cant even fit my super sized crocs on tonight.

Hope you get some relief soon, all the best Jan (over in western australia)

[Guest guest]

Trudi,

One thing never to do, is to stop Pred. quickly, unless recommended by your doctor. Not very pleasant, esp. if you have taken larger dosage, or for an extended period of time.

I believe the Pred. has helped, it did for me, but at the same time, after the 2nd week (60mg 1st week, 40 mg 2nd week) the side effects were terrible, and had to get off of it. I was surprised my dr. told me to stop immediatey. I had the roid rage, blurry vision, and had trouble dealing with all of that.

Good luck.

Debbie

To: erythema_nodosum_Group Sent: Thu, February 3, 2011 5:17:34 PMSubject: Re: (unknown)

Hello Jan (and All)

Yes Jan, to all of what you have written. I have deteriorated over the last five days and am totally immobile at the moment. I gave in yesterday and took 5mg of prednisone, and although still terribly sore, can walk this morning, it also seems the swelling is less, but that could just be that my legs have been elevated for 12 hours. The reason I gave into the pred yesterday was because the pain bought me to tears, and the total frustration at not being able to move or do anything got on top of me. I have been through a very emotional time since Christmas, with my relationship of four years ending very suddenly and unexpectedly. The reason given for the parting of the ways? He couldn't cope with my illness any longer. I guess each and everyone of you would understand how difficult it was to hear that, which is why, out of temper and self loathing, I stopped the steroids

abruptly. I guess I am now paying for such a stupid decision and the reality of everything has now hit me. Although we never lived together (thankfully), and I quite like my solitude, being alone and ill is very isolating. My children have been my rock, and I will come through this. It is very difficult having to rely on people, usually I am fiercely independent, and now need help for basic things. I am focusing on one thing at the moment, watching how fast my grass is growing in this amazingly volatile Queensland weather, and I am going to be the one who mows the lawn.........how is that for a goal?? Being outdoors in the garden is my favourite thing to do, especially when I having things on my mind, so I am aiming to get out there and a soon as I possibly can! So if any on of you can share 'quick fix' hints and tips, I will be most grateful

Trudi

(unknown)

Hi trudi and all, I totally understand the pain and ordeal of making yourself put that first weight on my feet in the morning and your toilet trip, I lie and jig , then sit on the side of the bed and jig, trying to get my ankle to bend up and down so as can even try to weight bear. then its the dreaded toilet trip down the hall. I call it dreaded as the pain is excruitiating and as you said , really have to force myself up out of desperation to go to the toilet. (sadly often dont make it so is totally dreaded ) after the trip can walk slightly better not much though and next stop is meds for pain and coffee, rwst while that takes effect and then make myself get organised and move ( slightly frees up but if stay sitting will lock all including hips, tailbone, knees and ankles) So spend day alternating positions some up some down) Very tired as dont get night sleep due to hip pain as we said earlier and also fatigued. Fall asleep at a drop of a hat in

chair during the day though, wake up from stiffness hurting needing to move then nodd off again,. ( many coffees spilt by nodding holding them, lol) .Do you get pain in and around your tail/tailbone area too? esp when shifting weight, or grtting upfrom sitting?

I asked about the appendix as had mine out at about 8 yrs of age too, funny co incidence. They say the appendix has no use but was curious as thought that perhaps it did if we all didnt have one anymore, clutching at straws probably though.

I have swollen up heaps tonight and the itch is driving me crazy, can feel new tight bumps adding to the old ones, had a funny throat the other day so seems like a fresh outbreak on top again, feel really flat and overheating.The skin on my legs feels so tight it feels like it wants to burst.With little piggy toes out at the bottom... uuuggghhh,

Wish I could get them to give me some pred, I really need a break from this even if only for a short time. Even just long enough to get on top of some of the mess at home as it adds up when swelling and stiffness makes it too painful to walk, cant even fit my super sized crocs on tonight.

Hope you get some relief soon, all the best Jan (over in western australia)

[Guest guest]

One of the things that most Drs don't know is that quick (even over a 2 month

period) changes in Prednisone level can trigger recurrence of Sarcoidosis and

EN. Most of the Sarcoidosis specialists now taper Prednisone doses by no more

than 2 mg per month below a dose of 10 mg per day. I understand the side

effects of our friendly steroid. The effects on the disorder are less well

understood, but still real. Additionally, if you have been on doses of over 10

mg per day for over 6 months, your body has modified the production of the

normal steroid. So, when you stop the Prednisone, your body still does not

manufacture the natural steroid, and lots of bad things can happen. So, unless

you have to crash off the Prednisone at your Drs request, a SLOW taper is best.

The other thing that they don't tell you is if you do stop Prednisone quickly,

it causes your tendons to soften and can cause ruptured tendons as well as aches

and pains. I have a partially ruptured biceps tendon, 2 ruptured wrist tendons,

and a partially ruptured Achilles tendon from being crashed off Prednisone.

(And that was even in the hospital on IV steroids to help reduce the side

effects.)

Wayne

>

> Trudi,

> One thing never to do, is to stop Pred. quickly, unless recommended by your

> doctor. Not very pleasant, esp. if you have taken larger dosage, or for an

> extended period of time.

>

> I believe the Pred. has helped, it did for me, but at the same time, after the

> 2nd week (60mg 1st week, 40 mg 2nd week) the side effects were terrible, and

had

> to get off of it. I was surprised my dr. told me to stop immediatey. I had the

> roid rage, blurry vision, and had trouble dealing with all of that.

>

> Good luck.

> Debbie

>

>

>

>

>

[Guest guest]

how is it going at this point Trudi? I got behind in email. I feel for you so much!chantelle Hello Jan (and All) Yes Jan, to all of what you have written. I have deteriorated over the last five days and am totally immobile at the moment. I gave in yesterday and took 5mg of prednisone, and although still terribly sore, can walk this morning, it also seems the swelling is less, but that could just be that my legs have been elevated for 12 hours. The reason I gave into the pred yesterday was because the pain bought me to tears, and the total frustration at not being able to move or do anything got on top of me. I have been through a very emotional time since Christmas, with my relationship of four years ending very suddenly and unexpectedly. The reason given for the parting of the ways? He couldn't cope with my illness any longer. I guess each and everyone of you would understand how difficult it was to hear that, which is why, out of temper and self loathing, I stopped the steroids abruptly. I guess I am now paying for such a stupid decision and the reality of everything has now hit me. Although we never lived together (thankfully), and I quite like my solitude, being alone and ill is very isolating. My children have been my rock, and I will come through this. It is very difficult having to rely on people, usually I am fiercely independent, and now need help for basic things. I am focusing on one thing at the moment, watching how fast my grass is growing in this amazingly volatile Queensland weather, and I am going to be the one who mows the lawn.........how is that for a goal?? Being outdoors in the garden is my favourite thing to do, especially when I having things on my mind, so I am aiming to get out there and a soon as I possibly can! So if any on of you can share 'quick fix' hints and tips, I will be most grateful Trudi (unknown) Hi trudi and all, I totally understand the pain and ordeal of making yourself put that first weight on my feet in the morning and your toilet trip, I lie and jig , then sit on the side of the bed and jig, trying to get my ankle to bend up and down so as can even try to weight bear. then its the dreaded toilet trip down the hall. I call it dreaded as the pain is excruitiating and as you said , really have to force myself up out of desperation to go to the toilet. (sadly often dont make it so is totally dreaded ) after the trip can walk slightly better not much though and next stop is meds for pain and coffee, rwst while that takes effect and then make myself get organised and move ( slightly frees up but if stay sitting will lock all including hips, tailbone, knees and ankles) So spend day alternating positions some up some down) Very tired as dont get night sleep due to hip pain as we said earlier and also fatigued. Fall asleep at a drop of a hat in chair during the day though, wake up from stiffness hurting needing to move then nodd off again,. ( many coffees spilt by nodding holding them, lol) .Do you get pain in and around your tail/tailbone area too? esp when shifting weight, or grtting upfrom sitting? I asked about the appendix as had mine out at about 8 yrs of age too, funny co incidence. They say the appendix has no use but was curious as thought that perhaps it did if we all didnt have one anymore, clutching at straws probably though. I have swollen up heaps tonight and the itch is driving me crazy, can feel new tight bumps adding to the old ones, had a funny throat the other day so seems like a fresh outbreak on top again, feel really flat and overheating.The skin on my legs feels so tight it feels like it wants to burst.With little piggy toes out at the bottom... uuuggghhh, Wish I could get them to give me some pred, I really need a break from this even if only for a short time. Even just long enough to get on top of some of the mess at home as it adds up when swelling and stiffness makes it too painful to walk, cant even fit my super sized crocs on tonight. Hope you get some relief soon, all the best Jan (over in western australia)

[Guest guest]

Hi Jim,

This is just a thought, and I have seen it work on others, and quite effectively, and it is Paw Paw ointment. I use it regularly, though I don't have psoriasis, just occasional eczema, but I have known it to help many others. In Australia it is called 'Lucas's Paw Paw Ointment' and it a totally natural balm.

Trudi

(unknown)

My psoriasis once again is getting out of control over all my body. I will be having knee surgery in November and once I heal from that will consider going on Enbrel. My questions are:

(1) Where do you find reliable information regarding gluten free diets?

(2) How long does it take for as gluten free diet to help?

(3)Can a gluten free diet work for Diabetics?

(2) What other non medicine type treatments might help to calm this flare? I have tried tumeric and it did nothing. I am currently using Clobex. Previously used Amevive and creams.

Thanks for any suggestions.

Mildred

[Guest guest]

Mildred, i think that Gluten takes a few days to cycle out of your system, but you should start seeing results pretty quick- within a few days.... I know Hasselbeck (SP?) (she is on the View) has a book about gluten free diet. She found out she had Celiac (gluten intollerance) when she came back from being on Survivor.  She actually got well while she was on the island- never felt so good in all her life- because all of the food they had on the island was gluten free. She came back and immediately felt terrible while eating hamburgers- etc. She tested positive for Celiac, and wrote a book about Gluten free diet.  There are a lot of different types of Glutens- Casien is a gluten found in milk... etc.  So you may want to take a look at her book and see what will work for you!

Take care, hope that helps!bethany

 

My psoriasis once again is getting out of control over all my body. I will be having knee surgery in November and once I heal from that will consider going on Enbrel. My questions are:

 

(1) Where do you find reliable information regarding gluten free diets?

(2) How long does it take for as gluten free diet to help?

(3)Can a gluten free diet work for Diabetics?

(2) What other non medicine type treatments might help to calm this flare? I have tried tumeric and it did nothing. I am currently using Clobex. Previously used Amevive and creams.

 

Thanks for any suggestions.

 

Mildred

-- But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.  Gal. 5:22-23