New Member

[Guest guest]

i will have to do that when i get back in the usa. since i am in

norway.that probebly would help.i have not gone to any one yet. so i

would have to find some one.

>

> I really think you need to see an ortho, or neuro and get an MRI

> done to see what is really going on.

[Guest guest]

Welcome, Steph!

As Marty said, this is a great place to come for information and support.

You'll be surprised how many type-A, overachievers are in this group, so most of

us can truly relate to your struggle to try to keep doing so much.

I sometimes think that Still's is the great big irony of my life. All of my

friends and family say that before I got the disease 4 1/2 years ago, I was the

" least Still " person they knew--I was always running around doing something,

volunteering, working, building things, throwing pots, boogie boarding, you name

it. Now I have to spend much more time being Still--so the disease is teaching

me to be patient, and more thoughtful, and less frantic. I guess that's the

silver lining.

Take care of you--and welcome again.

in Maine

>

> Thanks for the encouragement Marty!

> I do find it hard to admit I'm sick because I don't look sick. I've always

been hard on myself so it's hard to even convince me lol.

> It's also hard b/c I tend to be the kind of person that deals by myself.

Every once in a while I just break down b/c I can't take it anymore and I think

it freaks my friends and family out a bit

>

> but anyhow thanks for the tips and for the warm welcome

> Steph

>

[Guest guest]

Steph:

I was diagnosed last month........my flare up started January of this year

(didn't know what it was back then, family doctor told me I had a flu).  And

maybe I had it for a while but didn't notice because I saw scratch marks on my

skin and stuff.

When it flared up a month ago, I was in the hospital for five days.....I guess I

am still the " newest diagnosed " member.  I joined this group little over a week

ago.

I am still trying to figure this all out...I know my life has changed for good.

 Trying to stay positive as members suggested.  I think we all can live with

the disease.  Actually, when the diagnosis came in, I was glad that it wasn't

serious where I'd have 6 months or anything like that.......

I don't think I can go play basketball or run a marathon now but hey, I guess

God is telling me to finally take on some golf.....

Regards,

Jun, Sales Manager

California Metal & Supply

Website: www.californiametal.com

Office

Fax

Mobile

Subject: New Member

To: Stillsdisease

Date: Saturday, November 28, 2009, 4:23 PM

 

Hi!

I am a new member! My name is . I am a 20 yr old college student at WVU

majoring in Music Education with piano.

I started having symptoms 11/07 and was diagnosed 5/09. I get frustrated a lot

because I'm use to a busy lifestyle which I'm finding out I can't do anymore.

thanks for letting me join!

-Steph

[Guest guest]

Hi e,

Welcome to this wonderful group. I just want to say that I suffer from the " s "

sound too. It's my worst trigger as well .It drives me insane. I have the extra

added bonus of feeling compelled to imitate it in an exaggerated manner. Even

though I know it's nuts, I can't help myself. It feels like a way to mock the

offender. Any way, I just you to know that you found a place where everyone

understands.

Best regards,

Elaine

>

> Hey I'm new to this group as of yesterday.

>

> It is so nice to find it because like so many others I have slowly become

isolated and very very angry at the attempt after attempt to understand why I

have these reactions to things.

>

> It started around 13, when my father was chewing gum in the car and then moved

to a increased verbal reactions to the annoying forks on glass and sound of my

mothers voice when she says things like " special " or " circus " for example. It

happens with my sister, my mother, my father when he chews or clears his throat.

I felt like I was plain crazy, simply mad and it angered me that the absolute

blinding rage and verbal reactions to the triggers make me feel so immature. My

family is like " what the... " they really cant understand the total confusion

that sets in when I am surrounded by triggers. Also, like many others the

triggers develop over time, compounding and usually becoming more and more

prevalent the closer I become to someone relationally. It has become so bad that

I cannot eat dinner with the family, sit and watch a movie or practically

interact at all. I hate it and I have loud music on constantly to drown out the

noises. Sadly, even then I can hear voices through the walls and that drives me

mad. Its the low frequency that you can even feel vibrating your pillow if there

is someone, usually a male voice, in the other room talking. I do not want to

let this affect future relationships like it has in the past, pushing the others

away. The worst part is watching my loved ones trying to accommodate me to no

avail and them not understanding it at all. Its SO BAD.

>

> Triggers:

> Clearing throat

> " S " sounds - this is the worst. It makes me feel like instant panic and anger.

> Coughing - usually more than once.

> Eating, Chewing

> Saliva sounds

> Drinking

> Swallowing

> Silverware on glass

> Voices through the walls

> Gum chewing

>

> Reactions:

> Intense and almost blinding anger: causing confusion, tension headaches, lack

of concentration, etc.

> Extreme verbal reactions

> Intense apprehension

> Complete bodily tension and anxiety

>

[Guest guest]

For me it has become " s " , " P " ,and now " T " they just penetrate my head and cause

immediate anxiety. I find myself repeating the offensive words to my wife. I

thought I was crazy. She calls me Mr. Touretts " because I always repeat the

" SSSSS " sound after it escapes her teeth. It really is a new ear malady for me.

I'm in my forties and Never had this up until last year.

> >

> > Hey I'm new to this group as of yesterday.

> >

> > It is so nice to find it because like so many others I have slowly become

isolated and very very angry at the attempt after attempt to understand why I

have these reactions to things.

> >

> > It started around 13, when my father was chewing gum in the car and then

moved to a increased verbal reactions to the annoying forks on glass and sound

of my mothers voice when she says things like " special " or " circus " for example.

It happens with my sister, my mother, my father when he chews or clears his

throat. I felt like I was plain crazy, simply mad and it angered me that the

absolute blinding rage and verbal reactions to the triggers make me feel so

immature. My family is like " what the... " they really cant understand the total

confusion that sets in when I am surrounded by triggers. Also, like many others

the triggers develop over time, compounding and usually becoming more and more

prevalent the closer I become to someone relationally. It has become so bad that

I cannot eat dinner with the family, sit and watch a movie or practically

interact at all. I hate it and I have loud music on constantly to drown out the

noises. Sadly, even then I can hear voices through the walls and that drives me

mad. Its the low frequency that you can even feel vibrating your pillow if there

is someone, usually a male voice, in the other room talking. I do not want to

let this affect future relationships like it has in the past, pushing the others

away. The worst part is watching my loved ones trying to accommodate me to no

avail and them not understanding it at all. Its SO BAD.

> >

> > Triggers:

> > Clearing throat

> > " S " sounds - this is the worst. It makes me feel like instant panic and

anger.

> > Coughing - usually more than once.

> > Eating, Chewing

> > Saliva sounds

> > Drinking

> > Swallowing

> > Silverware on glass

> > Voices through the walls

> > Gum chewing

> >

> > Reactions:

> > Intense and almost blinding anger: causing confusion, tension headaches,

lack of concentration, etc.

> > Extreme verbal reactions

> > Intense apprehension

> > Complete bodily tension and anxiety

> >

>

[Guest guest]

Hey there,

Ive recently put a name to this in the last few weeks too every post I read is another "ya! me too" moment. I just realised the syllable issue too. I wear earplugs on a plane cuz you ussually have the 2 a few rows back that talk the whole flight and all you can hear is the "ssss" "ssss." and K's and P's more so K...for example, the word "milk" of people really pronounce the K in milk, Im just like "really? its milk, not milK! lol. I understand the need to say it after them though didnt think much of it till you said something. and the need to say it seeming to mock them is familiar too. its like just acknowleding it somehow. I dont know. the more I read, the more questions I have. Im asking everyone I know if they experience these things or do they know of anyone who does and an amazingly high number of people do or know of someone. I say Ive asked 20 people in the last week. 2 ppl say no, not me or anyone I know. 12 ppl say they know

someone who does and 6 who experience it personally. amazing to me. amazing because Ive been dealing w/this alone for years and amazing the similarities of past emotions. stress. anxiety...Im rambling again. All I can say is that I can relate. I can relate...I can relate...

Ginger

To: Soundsensitivity Sent: Sun, February 14, 2010 5:23:34 PMSubject: Re: New Member

For me it has become "s","P",and now "T" they just penetrate my head and cause immediate anxiety. I find myself repeating the offensive words to my wife. I thought I was crazy. She calls me Mr. Touretts" because I always repeat the "SSSSS" sound after it escapes her teeth. It really is a new ear malady for me. I'm in my forties and Never had this up until last year.> >> > Hey I'm new to this group as of yesterday. > > > > It is so nice to find it because like so many others I have slowly become isolated and very very angry at the attempt after attempt to understand why I have these reactions to things. > > > > It started around 13, when my father was chewing gum in the car and then moved to a increased verbal reactions to the annoying forks on glass and sound of my mothers voice when she says things like "special" or "circus" for example. It happens with my sister, my mother, my father when he chews

or clears his throat. I felt like I was plain crazy, simply mad and it angered me that the absolute blinding rage and verbal reactions to the triggers make me feel so immature. My family is like "what the..." they really cant understand the total confusion that sets in when I am surrounded by triggers. Also, like many others the triggers develop over time, compounding and usually becoming more and more prevalent the closer I become to someone relationally. It has become so bad that I cannot eat dinner with the family, sit and watch a movie or practically interact at all. I hate it and I have loud music on constantly to drown out the noises. Sadly, even then I can hear voices through the walls and that drives me mad. Its the low frequency that you can even feel vibrating your pillow if there is someone, usually a male voice, in the other room talking. I do not want to let this affect future relationships like it has in the past, pushing the others away.

The worst part is watching my loved ones trying to accommodate me to no avail and them not understanding it at all. Its SO BAD.> > > > Triggers: > > Clearing throat> > "S" sounds - this is the worst. It makes me feel like instant panic and anger. > > Coughing - usually more than once. > > Eating, Chewing> > Saliva sounds> > Drinking > > Swallowing> > Silverware on glass> > Voices through the walls> > Gum chewing> > > > Reactions: > > Intense and almost blinding anger: causing confusion, tension headaches, lack of concentration, etc.> > Extreme verbal reactions> > Intense apprehension> > Complete bodily tension and anxiety> >>

[Guest guest]

Hi ,

Welcome to our group... We are a caring bunch of Lymies who come here to find

ways to help improve our health and recover from Lyme.

I am very sorry to hear your wife has chronic Lyme... This is a tough disease as

I am sure you now know, but there are some good treatments that can help her get

better... Just knowing she actually has Lyme is a big part of the battle, at

least now she knows what she has to treat... Unfortunately, many never get a

proper diagnose (dx) and thus are never properly treated...

Many of us also have been to countless doctors, as you hang around here you will

come to understand why this is so.. It should not be, but unfortunately it is...

You have a couple of good rife type machines, the Doug Coil being the most

powerful... Are your children also infected with Lyme? There are parents here

treating their children and they should be able to offer some good advice...

Please ask any questions you wish, no matter what they are, all questions are

important and this is a good way for you to learn quickly... 's book is a

good tutorial about rife machines and we will help you however we can to get

your wife on the road to recovery... Many who use good effective treatment

protocols do get better, it is a slow process, but some natural treatments are

very effective...

I personally will keep you and your family in my prayers...

Take care,

Jim

>

> Hey, I am kinda new at all this. My wife was diagnosed in October of last

year with Chronic Lyme. We have been married 10 years in May and have been to

countless doctors. We believe she has had it since she was a teenager. We have

3 boys(3, 5, and 6). I am a pastor. is now 85% bedridden. We used our

tax money to purchase a GB4000, and a Doug Coil. This Thursday we will be doing

our first rife session. I have read Rosner's first book and working on book 2.

I am convinced this is the way. If any of you have any tips on children and

rifing I am very interested. We believe that we all have it, just that is

the only one in real bad shape. Any way, I look forward to being connected to

others in the same boat we are in. -

>

[Guest guest]

My amazement is with the Doctors, not with the patients. Having been pone I know that you turn everywhere looking for answers, and as my current doctor says, because it is usually Because of medications, rather than in spite of meds, very little is written about it in the medical journals, which means that each and every doctor when he sees it thinks that it is an extraordinary case. We who are communicating here know that there are many others who have experienced the same problems but the doctors are the ones who need to communicate.I wish you well, and hope you can get to a doctor who looks beyond the pharmaceutical products in order to help. Perhaps you could try detoxing and going gluten free for a while to see if you can get some respite. I do apologise if I sounded like I was on my high-horse! After suffering for 25 years and being told the same thing, and wasting money on doctors who saw me as an oddity, I am afraid my patience wore thin with them.Try lying on the floor with your legs raised at a higher level than your head to allow the blood to flow out of the extremities... it helped me with the pain!Take care. sorry for my ignorance but I am new to this site and have never been privy to this info until just recently. I have been thru this for 12 yrs and have never been told this I figured it out on my own. I have been the the best drs in America and was never told it was an auto immune problem so again please have patience with us who are not as schooled in this as yourself. I have never looked for a miracle cure in fact I begged the drs to take me off certain meds and to do allergy tests and after sending me to every doctor they sent me to a head doctor. because they were wrong I must have been crazy. after many yrs of trial and error I think I have found my answers at least I pray. I have a few months to got before I see a change as I am in full break out right now. again please have tolerance for others who are not getting the answers from our Doctors. that is why we are here to find answers that our drs. are not giving us. have a good day and thank you for your insight . From: Vicki Cathcart Sent: Thursday, October 13, 2011 2:35 PM To: erythema_nodosum_Group Subject: Re: New Member I am constantly surprised by the number of people who are still amazed by the findings that EN is a product of and auto-immune problem. This has been bandied about on so many occasions on this very website. I think the problem is that most people want to "fix" their EN condition with medication when it is quite possible that years of medication can actually lower your immune system. I would recommend visiting a nutritionist who could help by offering some advice on what may be the root cause; perhaps you might have an allergy to some types of foods, or medication, or perhaps there is an underlying condition that is so minor that it has been overlooked, but it can cause your body to show effects in some other way (EN). As a sufferer for over 25 years, I also went through the drug list with doctors who were hoping to find some miraculous cure but it wasn't until I visited a homeopath and naturopath who both recommended that I go off Gluten products (Gluten is so many things) that I had some success. This isn't necessarily your problem, you have to find your own, but food allergies could be a good start. Good Luck with finding a doctor who is also a nutritionist who may be able to help with this. regards Vicki ps I have also found that I have become allergic to eggs, and have eaten them all of my life ... several days a week. this has also added to my problems. I am now not quite fully recovered, but have not had an EN flare-up for over 3 years. Hi Sue I'm new here as well. I have been going thru this for 12+ years and it has been a nightmare. Just to start out do you take any stomach medicine?? I was on previcid for 10 yrs. and had a break out the whole time. I went to the famed Mayo clinic in Rochester Minnesota and after almost 9000.00 in tests told me to go home and put my feet up for three weeks. Well a little over 1 yr. ago I quit taking previcid and switched to Prilosec...(omeprazole) and had no problems. then 2 months ago they upped my dosage and BAM I'm broke out again. I was so heart broken over the last few weeks it left me desperate. I have a new dr who changed my dosage and now he is pretty sure it’s the stomach meds doing it. could it be all this time its been a proton pump inhibitor(PPI) that is making me break out. something about my auto immune system???? Seriously???? I will wait this out because at this point I have no choice. I don’t know if you have noticed where you get bumped EN develops? its like it finds the week tissue and explodes from within. I have had a day for this all to sink in I realized prevaid broke me out but for 2 yrs. was having no problems with Prilosec till changed dose so I did not put it together its ALL PPI. I also discovered I'm allergic to penicillin as well as I broke out on it about a yr. ago but maybe that was because I had a compromised immune system from the PPI???? Its all so much to understand. after thinking about it for a while the PPI’s STOP all stomach acid where meds like Zantac just reduce acid and I can only imagine the divine plan of stomach acid had to be for some reason such as keeping our systems running correctly. I also have fibromyalgia and have severe lactic acid build up in my tissues and I am really hoping that allowing my body to produce the acid it is supposed to actually make it may help release some of that build up. I can honestly say the last 12 yrs. have been hell and I am praying that this drs is correct. he said that not enough is known about the stopping of the acids and its effects. there has been great controversy over this. And yet the wonderful Mayo clinic blew me off. I was sent to a dermatologist a pulmonologist a gastroenterologist a gynecologist and a PSYCHIATRIST I guess because after they could not figure it out they figured I was crazy.. I guess is have to laugh or I would go crazy. there are many factors that could cause this an allergy to meds, a deep fungal infection, lupus, Ebstein Barr, (adult mono) if you have had mono.... many factors to investigate. Don’t let them make you feel crazy and don’t let them give up on you. something is compromising your system and you need to find out what. I am praying this change in meds will help me. I am sick and tired of being sick and tired!!!!!! there is a lot of helpful sites to go to look up EN research thru google and start looking. something may stand out to you. hopefully someone will also have a similar story thru this group? your post is the 1st I have gotten and I have not talked to anyone but you. I have felt horribly alone thru this. I was 37 when 1st diagnosed with this horror of a life and maybe this is my answer??? I will keep you up on my progress and you as well. let me know what you find or maybe is our stories are related thru meds???? who knows??? WOW I cannot believe I'm talking with someone with this!!!! WOW!!!! I have been alone in this journey, my husband has been SO WONDERFUL but I know he does not know the pain, fatigue and embarrassment of it all. after all these yrs. of horrible looking legs this summer I had a tattoo put down the outside of my right calf and 4 months later I broke out along it. it was my way of marking the end of EN and then it came back. what a kick in the behind that was. Well I'm going to quit rambling now. thanks for letting me carry on, I hope in some way this may help you but as of yet I'm still not sure of this theory my Dr. has but I'm running with it and praying he is correct. here's to an EN free life. Here is a hint if you get this cleared up never let them change more than one med on you at a time its too hard to pin point it down.!!! and also have forgiveness for yourself I spent the 1st few yrs. beating myself up because of this and it was not anything I did.... IT WAS DONE TO ME!!! write me back and keep me up on your days.... get rest, keep the legs up as much as possible and when all else fails have a glass of wine,(SMILE SMILE SMILE) So bye for now from Iowa Tara Cunningham gardengal@... From: muso_mum Sent: Wednesday, October 12, 2011 11:15 AM To: erythema_nodosum_Group Subject: New Member Hiya, I am new here. I am a 38 year old mum of 3 from Swindon, England. I have had various lumps of various sizes, shapes and colours for the past year, they come and go but there almost always seems to be a new one errupting just as one is shrinking. After seeing several doctors, (one of which actually brought in a few colleagues from around the practice to have a look at a particularly bad one) to have finally been told on Monday that I have EN. I have been sent for blood tests to see if there is an underlying reason for it and he has put me on naprosyn (naproxen). Apart from that I know little apart from what I can find online which can be conflicting and quite frankly scary when you don't know anything about it. any more info would be much appreciated as well as tips on how to help the pain and burning. I work as a special needs teaching assistant and am on my feet a lot as well as being on the floor often too, I also tend to get kicked under the table (accidently of course) several times a day. By the time I get home I just want to put my feet up with a cold wet cloth on my bumps, unfortunately I just don't get the time to do that until bed time by which time I am just far too tired...does anyone else get this constant tiredness? Is it part of this or could it be something to do with the possble underlying cause? I have been going mad this past year wondering what what was wrong with me and if it hadn't been for the very big very obvious lumps on my legs I probably would have thought I was the worlds biggest hypochondriac. It is so nice to finally have part of a diagnosis would just be nice if I knew more about it, apart from being told I was an unusual lady!Thanks for any help you can offer.Sue x

[Guest guest]

hmmm this is interesting. I have been allergic to eggs all of my life, I also take medication for the stomach (Nexium -esomeprazole), and have had several stomach surgeries including 'fundoplacations'. In the body of the two previous emails, from Vicki and Tara, there are these two things I have in common, along with the EN. Coincidence? I don't think so. I am also set to see a surgeon for another scope as my stomach issues suddenly became quite acute about six weeks ago and it is feared the fundoplacation has 'come undone', that or there is another problem, such as scarring, adhesions, hernias etc. I also have had many hernia repairs, and all hernias are rare types, such as spigelion hernias. The doctors say this is because I have a connective tissue disease which makes the collagen layer in the body very brittle. As yet, no diagnosis of my connective tissue disease has been discovered, nor has my 'multi system, sero-negative, inflammatory auto immune disorder', despite every test possible. I am, maintained by prednisone, oxycontin, esomeprazole and fluconazole, though occasionally break out and have to have the pred increased. I also have candidais of the esophagus, which has been ongoing due to prednisone. Frustrating, much. Over it, yes. And developing more allergies as I age, such as avocado, mushroom, banana and bread. These aren't full on allergies, but I seem to build up an intolerance to these foods if I eat them more than say once every couple of weeks. Just thought I would add this information after seeing similarities with you guys.

Regards

Trudi

(In Australia)

New Member

Hiya, I am new here. I am a 38 year old mum of 3 from Swindon, England. I have had various lumps of various sizes, shapes and colours for the past year, they come and go but there almost always seems to be a new one errupting just as one is shrinking. After seeing several doctors, (one of which actually brought in a few colleagues from around the practice to have a look at a particularly bad one) to have finally been told on Monday that I have EN. I have been sent for blood tests to see if there is an underlying reason for it and he has put me on naprosyn (naproxen). Apart from that I know little apart from what I can find online which can be conflicting and quite frankly scary when you don't know anything about it. any more info would be much appreciated as well as tips on how to help the pain and burning. I work as a special needs teaching assistant and am on my feet a lot as well as being on the floor often too, I also tend to get kicked under the table (accidently of course) several times a day. By the time I get home I just want to put my feet up with a cold wet cloth on my bumps, unfortunately I just don't get the time to do that until bed time by which time I am just far too tired...does anyone else get this constant tiredness? Is it part of this or could it be something to do with the possble underlying cause? I have been going mad this past year wondering what what was wrong with me and if it hadn't been for the very big very obvious lumps on my legs I probably would have thought I was the worlds biggest hypochondriac. It is so nice to finally have part of a diagnosis would just be nice if I knew more about it, apart from being told I was an unusual lady!Thanks for any help you can offer.Sue x

[Guest guest]

Hello All!i am pretty new to the group, and after reading many of the emails that have been sent out, I see many many similarities in my medical background.  I have been allergic to eggs my entire life. I found that eating organic eggs helped when using them in baking.  I also am very hormone sensitive- have never been able to take traditional birth control pills- decided on an IUD for the lower hormone levels in it, and now must switch to a Copper IUD so that I am completely hormone free.  I suffered from severe asthma as a child(some suspect asthma is an autoimmune disease- but there is debate in the medical community about that.), and as a result was put on numerous medications. I have mild arthritis as well- but have not had to do any thing major about that since it is mild.  I also have found that I tend to get intestinal problems when I eat too much gluten in my diet. I have thought a lot about going gluten free- with three kids it poses a slight challenge... one that I will pray about taking on.

Love that we can all chat about this, and talk about what we have found- what works, what doesn't, etc. What a great resource!!!Thanks!bethany

 

hmmm this is interesting.  I have been allergic to eggs all of my life, I also take medication for the stomach (Nexium -esomeprazole), and have had several stomach surgeries including 'fundoplacations'.  In the body of the two previous emails, from Vicki and Tara, there are these two things I have in common, along with the EN.  Coincidence?  I don't think so.  I am also set to see a surgeon for another scope as my stomach issues suddenly became quite acute about six weeks ago and it is feared the fundoplacation has 'come undone', that or there is another problem, such as scarring, adhesions, hernias etc.  I also have had many hernia repairs, and all hernias are rare types, such as spigelion hernias.  The doctors say this is because I have a connective tissue disease which makes the collagen layer in the body very brittle.  As yet, no diagnosis of my connective tissue disease has been discovered, nor has my 'multi system, sero-negative, inflammatory auto immune disorder', despite every test possible.  I am, maintained by prednisone, oxycontin, esomeprazole and fluconazole, though occasionally break out and have to have the pred increased.  I also have candidais of the esophagus, which has been ongoing due to prednisone.  Frustrating, much.  Over it, yes.  And developing more allergies as I age, such as avocado, mushroom, banana and bread.  These aren't full on allergies, but I seem to build up an intolerance to these foods if I eat them more than say once every couple of weeks.  Just thought I would add this information after seeing similarities with you guys.

Regards

Trudi

(In Australia)

New Member

 

 

Hiya, I am new here. I am a 38 year old mum of 3 from Swindon, England. I have had various lumps of various sizes, shapes and colours for the past year, they come and go but there almost always seems to be a new one errupting just as one is shrinking. After seeing several doctors, (one of which actually brought in a few colleagues from around the practice to have a look at a particularly bad one) to have finally been told on Monday that I have EN. I have been sent for blood tests to see if there is an underlying reason for it and he has put me on naprosyn (naproxen). Apart from that I know little apart from what I can find online which can be conflicting and quite frankly scary when you don't know anything about it. any more info would be much appreciated as well as tips on how to help the pain and burning. I work as a special needs teaching assistant and am on my feet a lot as well as being on the floor often too, I also tend to get kicked under the table (accidently of course) several times a day. By the time I get home I just want to put my feet up with a cold wet cloth on my bumps, unfortunately I just don't get the time to do that until bed time by which time I am just far too tired...does anyone else get this constant tiredness? Is it part of this or could it be something to do with the possble underlying cause? I have been going mad this past year wondering what what was wrong with me and if it hadn't been for the very big very obvious lumps on my legs I probably would have thought I was the worlds biggest hypochondriac. It is so nice to finally have part of a diagnosis would just be nice if I knew more about it, apart from being told I was an unusual lady!Thanks for any help you can offer.Sue x

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

[Guest guest]

Hello All, my name is Ellen, and I am so glad I found this group, still reading

through emails, and files and wonderful information. Sounds like I am lucky,

with a mild case. I am 60, have osteoporosis, and Spinal Stenosis. I had

shingles last fall. Early this year, a bad sinus infection finally sent me to

the Dr. It slowly improved, then in April I started with severe pain in my

right foot and knee. A large red patch appeared just under the kneecap, was

extremely painful to touch. I had to use a walking stick to even walk. Many

nights I had to take Advil to get some sleep. When I first went to the Dr.

after a month of pain, we were both thinking Arthritis. But the X-rays were

" pretty good " , per my Dr. So, he scheduled an MRI. I had the MRI June 15th.

The results came back " possible inflammation " . Started noticing a red spot on

my foot, then the knee, foot and ankle would swell throughout the day. So,

back to Dr. He ran more tests, ruled out TB, Lupus, etc. and diagnosed EN. He

offered a round of Prednisone, but I will try it as a last resort, like not able

to walk at all. At this point, I notice as one red spot starts to leave,

another one appears. The foot and ankle swelling lasted for 6 weeks, is not so

bad now. Today, I am getting the familiar pain in my left foot. So far I was

thinking if I have one good leg, then I can cope. Now this is scary.

I believe my case is mild, I have looked at some of the photos you have posted,

and my spots are not nearly as swollen. I would not call them nodules, but

patches. Yes, they do stay a long time, and then turn brown. The pain seems to

be in the joint or bone. Still using my walking-stick most days; but have a few

days occasionally where I can walk short distances on my own.

Thanks all for the information, and keep posting what worked.