question

[Guest guest]

MY RD makes me get a flue shot, although I'm convinced they do me more harm

than good.

Being that my initial illness may have started 2 days after (back in 1990)

the army gave me all of their inoculations I am convinced something not unlike a

flu shot triggered this life of hell.

But that's just my opinion....

Kirk

[Guest guest]

Kirk,

I also wonder at times if they do more harm than good which is why I havn't

pursed getting them in the past but I guess now that I have Still's to get

" anything " might put me in jepordy of going back in the hospital so I guess it's

the less of 2 evils!

Chris

Kirk Bonanny wrote:

MY RD makes me get a flue shot, although I'm convinced they do me more

harm than good.

Being that my initial illness may have started 2 days after (back in 1990) the

army gave me all of their inoculations I am convinced something not unlike a flu

shot triggered this life of hell.

But that's just my opinion....

Kirk

[Guest guest]

You have to remember that the influenza vaccine is an inactivated or dead

virus.So you cannot get the flu from them.From what I have seen in the

emergency dept as an RN.People with chronic illnesses who do not get

vaccinated,and get influenza,do not do well at all.The duration of illness

is longer.The amount of disability incurred by it is catastrophic! I am not

even talking about folks in their 70's,80's or 90's. I do not have a

spleen,so the jury is out as to how well of an antibody response I will have

from any vaccines.But in my mind,the worst thing that happens is that I get

the shot,it doesn't work as well as in others.But even that gives me a

little safeguard against full blown influenza.In the end we all have to make

decisions that are best for us,and our families.I hope everyone remains as

healthy as humanly possible!

Take care,Nissa

>

>Reply-To: Stillsdisease

>To: Stillsdisease

>Subject: Re: Question

>Date: Wed, 1 Nov 2006 19:51:02 -0800 (PST)

>

>Kirk,

> I also wonder at times if they do more harm than good which is why I

>havn't pursed getting them in the past but I guess now that I have Still's

>to get " anything " might put me in jepordy of going back in the hospital so

>I guess it's the less of 2 evils!

> Chris

>

>Kirk Bonanny wrote:

> MY RD makes me get a flue shot, although I'm convinced they do

>me more harm than good.

>Being that my initial illness may have started 2 days after (back in 1990)

>the army gave me all of their inoculations I am convinced something not

>unlike a flu shot triggered this life of hell.

>But that's just my opinion....

>Kirk

>

>

[Guest guest]

Norma,

So sorry to hear about the death in your family.

And no worries about asking something twice. Heck, I ask the same

questions over and over because I can't recall the answers!

Houston

[Guest guest]

Norma, My skin on my hands and feet dry out really badly and itch! I

would take that up w/ your doc because you could have an allergy.

Keep us posted!

love Sharon and xxoo

> Hi Everyone,

>

> Have any of you wonderful people had the strange experience of

> itching ears, eyes, face? Even my scalp is itchy. I could just sit-

> and-scratch all day & night and the itchiness would still be there.

>

> No rash - only an itching.

>

> If someone has suffered through this itching sensation please let

> me know how you got rid of it. This has been going on for over 2-

> weeks now and nothing (yet) has been able to chase the itchiness away.

>

> Asking for help,

> Norma in Sonoma, CA

>

> ---------------------------------

> Everyone is raving about the all-new Yahoo! Mail beta.

>

>

[Guest guest]

Norma sorry to hear of your loss. Sometimes my rash itches and sometimes it

is just that red lacey look. Liz NJ

[Guest guest]

Norma sorry to hear of your loss. Sometimes my rash itches and sometimes it

is just that red lacey look. Liz NJ

[Guest guest]

Brett,

While I no longer am experiencing much pain, the answer to your

question is that I absolutely had tons of pain with normal blood

work. I went for years and years with no diagnosis simply because

my blood work was normal so thus nobody would believe the amount of

pain I was in.

Now that I have had several years of medication building up in me, I

am way better off in the pain department and the only thing that is

different is that my SED rate is down some. otherwise, everything

looks just like it always has.

Personally I believe pain is an indicator of something. If it were

me, I'd question if the meds are working when I have that much pain

as well as the other symptoms you described. Might be time to mix it

up some if you and your doc think so.

Houston

[Guest guest]

Brett,

While I no longer am experiencing much pain, the answer to your

question is that I absolutely had tons of pain with normal blood

work. I went for years and years with no diagnosis simply because

my blood work was normal so thus nobody would believe the amount of

pain I was in.

Now that I have had several years of medication building up in me, I

am way better off in the pain department and the only thing that is

different is that my SED rate is down some. otherwise, everything

looks just like it always has.

Personally I believe pain is an indicator of something. If it were

me, I'd question if the meds are working when I have that much pain

as well as the other symptoms you described. Might be time to mix it

up some if you and your doc think so.

Houston

[Guest guest]

, thanks for the response. My Rd would like to try different drugs, but

because of the brain lesions I can't take enbrel or remicade.

Brett

Re: question

Brett,

While I no longer am experiencing much pain, the answer to your

question is that I absolutely had tons of pain with normal blood

work. I went for years and years with no diagnosis simply because

my blood work was normal so thus nobody would believe the amount of

pain I was in.

Now that I have had several years of medication building up in me, I

am way better off in the pain department and the only thing that is

different is that my SED rate is down some. otherwise, everything

looks just like it always has.

Personally I believe pain is an indicator of something. If it were

me, I'd question if the meds are working when I have that much pain

as well as the other symptoms you described. Might be time to mix it

up some if you and your doc think so.

Houston

[Guest guest]

, thanks for the response. My Rd would like to try different drugs, but

because of the brain lesions I can't take enbrel or remicade.

Brett

Re: question

Brett,

While I no longer am experiencing much pain, the answer to your

question is that I absolutely had tons of pain with normal blood

work. I went for years and years with no diagnosis simply because

my blood work was normal so thus nobody would believe the amount of

pain I was in.

Now that I have had several years of medication building up in me, I

am way better off in the pain department and the only thing that is

different is that my SED rate is down some. otherwise, everything

looks just like it always has.

Personally I believe pain is an indicator of something. If it were

me, I'd question if the meds are working when I have that much pain

as well as the other symptoms you described. Might be time to mix it

up some if you and your doc think so.

Houston

[Guest guest]

Brett,

Has he tried Methotrexate or Arava or is that not possible with the

lesions as well? I sure hope you find something to help soon. Do you

find anything that seems to help?

Houston

>

> , thanks for the response. My Rd would like to try different

drugs, but because of the brain lesions I can't take enbrel or

remicade.

>

> Brett

[Guest guest]

Brett,

Has he tried Methotrexate or Arava or is that not possible with the

lesions as well? I sure hope you find something to help soon. Do you

find anything that seems to help?

Houston

>

> , thanks for the response. My Rd would like to try different

drugs, but because of the brain lesions I can't take enbrel or

remicade.

>

> Brett

[Guest guest]

, I had a MRI done last month and there were no changes in the lesions

since the MRI I had back in Feb. My RD was hoping that the kineret would shrink

the lesions, but no such luck! I will ask about arava when I go see her next

week.

Brett

Re: question

Arava is a DMARD like MTX and sometimes is used instead of MTX. I

don't know how different they are. I was having too bad of side

effects on MTX so I got put on Arava.

Those brain lesions are scary. How often do you have to have your

brain re-scanned to see if there are changes?

[Guest guest]

, I had a MRI done last month and there were no changes in the lesions

since the MRI I had back in Feb. My RD was hoping that the kineret would shrink

the lesions, but no such luck! I will ask about arava when I go see her next

week.

Brett

Re: question

Arava is a DMARD like MTX and sometimes is used instead of MTX. I

don't know how different they are. I was having too bad of side

effects on MTX so I got put on Arava.

Those brain lesions are scary. How often do you have to have your

brain re-scanned to see if there are changes?

[Guest guest]

My blood works is normal since 3months ago but i still feel pain from

time to time, the trick is not to get scared because of the pain, it

is signal that you need some rest but try to keep going with your

life or maybe you will fell worse.

That's my advice

>

> Hello stilligans,

> I was dx back in Nov. 05 and since Feb.. or march my blood work is

normal. I am on kineret when I don't have some type of infection

going on and plaquenil and antinflamitory called lodine. Even with

the blood work be normal I still have a great deal of pain in my

hands, elbows, shoulders and my knees and my RD feels I should not be

in so much pain. I also still have fevers often, I get hot then cold

then hot again this goes on everyday. Whenever I do any type of

physical activity I start to sweat real bad and get exhausted easily.

I have lesions in my brain caused by still's and I get headaches

frequently, my memory is shot and I cannot concentrate very well. My

question to the group is, does anybody experience pain even though

your blood work is ok.

>

> thanks, Brett

>

>

[Guest guest]

Hi Kirk,I also have this problem and was told it is Fibromyalgia,many of the hot

spots are located in the back.Hope you find out what is causing it.

love elly

Kirk Bonanny wrote:

Howdy all. I have a question I hope someone could shed some light on.

I

used to love having massages/having my back rubbed. I can no longer tolerate

the pain I get whenever anything touches my back for the last year or so.

Anyone ever hear of anything like this? Even a normal rub hurts so bad I

can't tolerate it.

Kirk

[Guest guest]

Kirk,

I think those with fibro have this issue. I would recommend seeing a

medical massage therapist versus a regular one who would understand

techniques to better serve you. You would find one of these in a

physical therapist or chiropractor's office. I used to see a massage

therapist in my physical therapists office and those massages were far

better for me than just going to the spa.

Houston, TX

[Guest guest]

Thanks for the info. I've never been told I have Fibro, but my RD won't

rule it out, either. I do have many of the symptoms though. This is one

thing that stinks (I'm being nice and not using my " normal " language there,

LOL) is that having my back rubbed used to be my favorite thing, as it felt

so damn good and was so relaxing.

I guess that's how it gfoes these days, Kirk.

>

> Hi Kirk,I also have this problem and was told it is Fibromyalgia,many of

> the hot spots are located in the back.Hope you find out what is causing

> it.

> love elly

>

> Kirk Bonanny <kbonanny@... <kbonanny%40gmail.com>> wrote:

> Howdy all. I have a question I hope someone could shed some light on. I

> used to love having massages/having my back rubbed. I can no longer

> tolerate

> the pain I get whenever anything touches my back for the last year or so.

> Anyone ever hear of anything like this? Even a normal rub hurts so bad I

> can't tolerate it.

> Kirk

>

>

[Guest guest]

Thanks for the info. I've never been told I have Fibro, but my RD won't

rule it out, either. I do have many of the symptoms though. This is one

thing that stinks (I'm being nice and not using my " normal " language there,

LOL) is that having my back rubbed used to be my favorite thing, as it felt

so damn good and was so relaxing.

I guess that's how it gfoes these days, Kirk.

>

> Hi Kirk,I also have this problem and was told it is Fibromyalgia,many of

> the hot spots are located in the back.Hope you find out what is causing

> it.

> love elly

>

> Kirk Bonanny <kbonanny@... <kbonanny%40gmail.com>> wrote:

> Howdy all. I have a question I hope someone could shed some light on. I

> used to love having massages/having my back rubbed. I can no longer

> tolerate

> the pain I get whenever anything touches my back for the last year or so.

> Anyone ever hear of anything like this? Even a normal rub hurts so bad I

> can't tolerate it.

> Kirk

>

>

[Guest guest]

In a message dated 3/26/2007 8:04:55 A.M. Eastern Standard Time,

kbonanny@... writes:

Howdy all. I have a question I hope someone could shed some light on. I

used to love having massages/having my back rubbed. I can no longer tolerate

the pain I get whenever anything touches my back for the last year or so.

Anyone ever hear of anything like this? Even a normal rub hurts so bad I

can't tolerate it.

Kirk

I'm the exact same way. I have a new neighbor friend who's a toucher/light

slapper when she talks and I'm going to have to say something to her cause it

really hurts. And these are just very light touches. Al can't even give me

back rubs anymore. I do not believe that I have fibro, I always thought I was

more tender because of the steroids I've been on for what seems like

centuries. It seems to make everything more hyper-sensitive for me it seems.

Carole from Hollywood FL

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[Guest guest]

In a message dated 3/26/2007 8:04:55 A.M. Eastern Standard Time,

kbonanny@... writes:

Howdy all. I have a question I hope someone could shed some light on. I

used to love having massages/having my back rubbed. I can no longer tolerate

the pain I get whenever anything touches my back for the last year or so.

Anyone ever hear of anything like this? Even a normal rub hurts so bad I

can't tolerate it.

Kirk

I'm the exact same way. I have a new neighbor friend who's a toucher/light

slapper when she talks and I'm going to have to say something to her cause it

really hurts. And these are just very light touches. Al can't even give me

back rubs anymore. I do not believe that I have fibro, I always thought I was

more tender because of the steroids I've been on for what seems like

centuries. It seems to make everything more hyper-sensitive for me it seems.

Carole from Hollywood FL

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[Guest guest]

Dear Kirk,

Yeah, I don't let ANYBODY touch my back... or arms.... or legs... I hurt

all over & don't want any one touching me. A back massage sounds like pure

torture!

Kind Regards,

Pat

Austin, TX

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[Guest guest]

What are you different ailment above and beyond the textbook ones?

Ruedenauer2@...

Searching: O'BRIEN, RUEDENAUER, JENNINGS, MUNGENAST, (P)FREUNDSCHUH,

EBERSOLE/EVERSOLE and misc spellings. Little information for MILLER, DAY,

MCCORD,

REININGER in Pa

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[Guest guest]

What are you different ailment above and beyond the textbook ones?

Ruedenauer2@...

Searching: O'BRIEN, RUEDENAUER, JENNINGS, MUNGENAST, (P)FREUNDSCHUH,

EBERSOLE/EVERSOLE and misc spellings. Little information for MILLER, DAY,

MCCORD,

REININGER in Pa

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.