OT/ or anyone - (clubbing)

July 2, 2005

, Ola'! How are you? I hope all is well with you! Awhile

back, you had asked me about my " clubbing " and I tried to get back

with you by typing a post and ended up deleting it before getting it

sent. So, I'll try agian. Here goes...Intially, I had none. That

was when my bloodwork started exhibiting the RF off and on. It was

not evident at my only rheumy appointment either. My bloodword came

back negative as well and my ESR was down at 16. (you know I seen

him on a good day) Only wish the good days could of stuck around!

Anyhow, that was back on 6/30/2003. Now, my ESR on a good day is

around 25. But, I guess since I hit the 40 year mark; that according

to my doctor is normal. In other words,in just under two years, my

ESR average jumped close to 10 points for a baseline. Back to the

clubbing...I had no visible signs at said visit. Now, I have mainly

3 fingers involved at all times. It started out out with my thumbs.

They look okay for the most part with some cuticle overgrowth at

times. My right hand is the bad one. My first three fingers are

involved with my right ring finger being distorted to the right at

mid knuckle. (doc says that I recently injured it and just forgot.)

From the end tip knuckle on the 3 fingers to the tip are discolored.

The first two are puffed up with a reddish or purplish tint. I have

ridging as well. On my bad ring finger - I'm scared that it is just

going to rot off, I guess. Severe ridging running the length of the

nail. Extremely swollen at the end and my nail is discolored as well

Note: I have no humps in the nails like in clubbing photos that I

have looked at. To me it looks like a nail fold infarct, but what do

I know? Anyhow, it will get worse when I'm in a flare and then when

it gets better the flare lessons. 2 months ago it was on my left

ring finger and my finger was really hurting. Doc looked at it and

said to stop smoking and it would go away and that I did not need a

referral to a Dermatologist. Imagine that? My left ring finger

cleared up completely. My thumbs were involved at that time and were

crappy as well. They are fine now too. I did quit smoking for about

a minute and there was no improvement. When I smoke more they don't

seem to get any worse? I'm still quitting regardless. It is just

the right thing to do and I know that! Anyhow, my r - ring finger is

really bad all the time. It is really tight skin and my skin just

peels away. It is very discolored and hurts down to the mid knukle

that is now deformed due to the supposed injury that I can't

remember. My mid knuckles now on almost all of the fingers is red and

with like blisters or something. Looks like I scuff them up

somehow? My knuckles on my hands usually are good indicators of how

I'm gonna feel on any given day. Red, bad. I really am at a loss on

how to explain it? Shirley might be able to but I'm not sure?

Sometimes it looks as if there is slight piting going on. My nails

when involved look shiny and sometimes so does the skin and at other

times my nail looks dry and dented? I explained it so much better

before darn it! My fingers do feel " tight " at times and sometimes

they swell from my imaginary injuries, I guess? Have not notice any

Raynaurd syndrome though. Heat and cold really don't seem to effect

them. The knuckle at the tip b4 nail to the mid knickle, the skin

seems tight. I does look as if I have " sausage digits " on all

fingers. I'm at a loss? Can anyone clue me in? So far the doctor

has been unable to persuade my that my head is doing all of this.

The RF in my blood is now always there for the last 2 years, don't

know the level - doc said there is no such thing as a test to measure

the RF level - which confuses me as I was under the impression that

there was? When I'm in a flare, I run a fever of around 99.1 to

99.4. I feel sick all the time for the most part. So much has

changed in the last couple of years. Was a outdoors type of person

and now I'm a hope to be able to get out of bed person and just

simply will not accept that it is all in my head. The stress

certainly is and really doesn't help one iota. I just wish someone,

anyone could or would help me and take this seriously. First, I

blew all this off thinking yeah right whatever. Then while on depo-

provera my God were the flares unreal. I couldn't open anything, my

toothpaste, etc.. Couldn't hold a pen, button stuff - ya know the

drill. Doctor said and I quote, " it is a reaction to the

prednisone. " I'm sure as you may of guessed...the only thing now a

year after that is I could put you on prednisone for pain. I'm

scared out of my mind to take that again. When I was on it I felt

bizarre - not just from the staying up for 72+ hours at a time which

didn't help, but it made me feel like I didn't know real from unreal

and it made me angry, etc... I'm desperate and rambling again. I'm

just really at a loss. Scared! I'm off the depo but the flares

still come, maybe not as intense and without all the hair loss. I

finally started thinking that maybe I was sick about 3-4 months

after the rheumy visit. It has continued now for just over 2 years

with no end in sight, Today my knuckles are red and my shoulder's,

knees, ankles, heels, hands, fingers, and hips not to mention my

imaginary neck injury. I constantly seem to hurt my spine and in

turnit throughs me into the imaginary flare, you can visibly see the

swelling (although minor compared to someone with diabetes swelling)

you can visibly see the redness on all the joints. i don't think my

pcp is blind other than to me. I just want this all to go away -

yet, it doesn't. I think that I'm gonna come down with bronchitis

again as well? They are burning the fields here which has a lot to

do with that. I finally had to accept that I am sick last year. The

acceptance has been a little tougher. I think that started happening

around Febuary of this year and then I was so isolated and more or

less extremely lonely that no-one believed me and could understand.

That was when I stumbled upon this group. I can relate a lot of

my " imaginary stuff " to your stories and felt like someone heard me

at least and could relate. That has been an extreme help and has

uplifted me to try wand trudge on. I hope to feel better someday and

would like to spend my good days advocating for those who suffer

needlessly. I'm beginning to think that just isn't in the cards for

me. I can relate to what Loretta said about being mad with or at

God. I'm not but I certainly question " why " , what did I do that was

so bad to suffer like this. I've gone back and forth with denial

only to be slapped in the face with yet another flare. That will

ground you real quick. now, I guess I am at - I'm sick and no-one is

gonna be able to help me. I'm not gonna just lay down and die

though. They are gonna listen to all my imaginary woes until that

day comes. I say that but, 1/2 the time - okay more than that - I

just simply don't bother with the doc. He is so put off by having to

deal with me and I usually can't even see him. That has been part of

the problem.. He is never available. He will be on vacation....I

guess he takes a working vacation because he still stands right there

in the hallway and patients check in to see him. Go figure, that

has happened about 4 or 5 times now. One would think that if the

clubbing is indeed from smoking he would at least check my lungs.

Nope! Hell on my neck injury - I told him that I would get dizzy

while tilting my head to wash my hair. he said then don't do that

and that I must have water in my ears. He didn't bother to look

either...that - I think it when reality really set in. he doesn't

believe me and has a " tude " and could care less about helping me in

any way. It was and is still shocking and scarry and real let down.

Now, I have no more ideas on what to do. I just don't know

anymore. I am going to counseling. It doesn't seem to be helping my

head to stop all this. Altering my life, changing my blood,

disfiguring parts of my body, forgetting accidents that never

happened, redness, swelling, pain, bone spurs, scoliosis, congenital

lumbarization of L5-6/S1, knee surgery, lipoma surgery, nervous

breakdown, skin discolorization, nail ridging, hemangiomas, bulged

discs, facet disease, stomach problems galore, weakness, fatigue,

fever, my spine to swell, and chills. I just wish that my counselor

could speed up me getting a handle on myself to stop all this. I'm

sure that is the only thing that me and the good ol doc can agree

on. Ane then again - probably not. Maybe I just should forget all

this and just do something like go walking or better yet running and

hiking and shopping and cooking and cleaning and just quit

complaining. Maybe I'm just a constant complainer who just needs to

shut her mouth and get over it! I did that last year. It didn't

seem to help then. But, I guess my head wasn't so off then. I think

that sometimes I will just insist that he go ahead and commit me.

I'm sure ECT would make me forget. They could do it with no

sedation. I can take it! I'm just ranting now. I probably should

end this novel. My head is telling me crazy things again. My

fingers are hurting so I better stop. I wouldn't wish any of this on

my worst enemy. Maybe the doc? Just kiddin' that was a really sick

joke, sorry. I just hope that all of you can have good doctors - ya

know one that is still somewhat human and compassionate about his

fellow man. I wish all the best and pray for a cure. (yeah I know

there is more money in treating the symptoms) ( my doctor must not

have heard that yet, oh nope he is smarter - he gets paid for

nothing! What a good deal for him! I hope that today is a good day

for each and everyone. God Bless and thanks for letting my head

complain yet once more! Take care! Kim

July 2, 2005

There is a lot in here, Kim, so I'll ask a couple of questions at a time.

First though, I agree with Babs - it's time for a new physician ASAP.

If your fingers don't look like the pictures illustrating clubbing, maybe it

isn't clubbing. Who said it was clubbing?

It almost sounds like Buerger's disease. Has you physician mentioned that

possibility? Have you ever had ulcers on the affected fingers? If so, it is

imperative that you stop smoking as soon as you can. No matter what the

problem is, smoking is only going to make it worse and, perhaps, add other

issues. Maybe you could ask your physician for help with quitting (or your

new physician)?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] OT/ or anyone - (clubbing)

> , Ola'! How are you? I hope all is well with you! Awhile

> back, you had asked me about my " clubbing " and I tried to get back

> with you by typing a post and ended up deleting it before getting it

> sent. So, I'll try agian. Here goes...Intially, I had none. That

> was when my bloodwork started exhibiting the RF off and on. It was

> not evident at my only rheumy appointment either. My bloodword came

> back negative as well and my ESR was down at 16. (you know I seen

> him on a good day) Only wish the good days could of stuck around!

> Anyhow, that was back on 6/30/2003. Now, my ESR on a good day is

> around 25. But, I guess since I hit the 40 year mark; that according

> to my doctor is normal. In other words,in just under two years, my

> ESR average jumped close to 10 points for a baseline. Back to the

> clubbing...I had no visible signs at said visit. Now, I have mainly

> 3 fingers involved at all times. It started out out with my thumbs.

> They look okay for the most part with some cuticle overgrowth at

> times. My right hand is the bad one. My first three fingers are

> involved with my right ring finger being distorted to the right at

> mid knuckle. (doc says that I recently injured it and just forgot.)

> From the end tip knuckle on the 3 fingers to the tip are discolored.

> The first two are puffed up with a reddish or purplish tint. I have

> ridging as well. On my bad ring finger - I'm scared that it is just

> going to rot off, I guess. Severe ridging running the length of the

> nail. Extremely swollen at the end and my nail is discolored as well

> Note: I have no humps in the nails like in clubbing photos that I

> have looked at. To me it looks like a nail fold infarct, but what do

> I know? Anyhow, it will get worse when I'm in a flare and then when

> it gets better the flare lessons. 2 months ago it was on my left

> ring finger and my finger was really hurting. Doc looked at it and

> said to stop smoking and it would go away and that I did not need a

> referral to a Dermatologist. Imagine that? My left ring finger

> cleared up completely. My thumbs were involved at that time and were

> crappy as well. They are fine now too. I did quit smoking for about

> a minute and there was no improvement. When I smoke more they don't

> seem to get any worse? I'm still quitting regardless. It is just

> the right thing to do and I know that! Anyhow, my r - ring finger is

> really bad all the time. It is really tight skin and my skin just

> peels away. It is very discolored and hurts down to the mid knukle

> that is now deformed due to the supposed injury that I can't

> remember. My mid knuckles now on almost all of the fingers is red and

> with like blisters or something. Looks like I scuff them up

> somehow? My knuckles on my hands usually are good indicators of how

> I'm gonna feel on any given day. Red, bad. I really am at a loss on

> how to explain it? Shirley might be able to but I'm not sure?

> Sometimes it looks as if there is slight piting going on. My nails

> when involved look shiny and sometimes so does the skin and at other

> times my nail looks dry and dented? I explained it so much better

> before darn it! My fingers do feel " tight " at times and sometimes

> they swell from my imaginary injuries, I guess? Have not notice any

> Raynaurd syndrome though. Heat and cold really don't seem to effect

> them. The knuckle at the tip b4 nail to the mid knickle, the skin

> seems tight. I does look as if I have " sausage digits " on all

> fingers. I'm at a loss? Can anyone clue me in? So far the doctor

> has been unable to persuade my that my head is doing all of this.

> The RF in my blood is now always there for the last 2 years, don't

> know the level - doc said there is no such thing as a test to measure

> the RF level - which confuses me as I was under the impression that

> there was? When I'm in a flare, I run a fever of around 99.1 to

> 99.4. I feel sick all the time for the most part. So much has

> changed in the last couple of years. Was a outdoors type of person

> and now I'm a hope to be able to get out of bed person and just

> simply will not accept that it is all in my head. The stress

> certainly is and really doesn't help one iota. I just wish someone,

> anyone could or would help me and take this seriously. First, I

> blew all this off thinking yeah right whatever. Then while on depo-

> provera my God were the flares unreal. I couldn't open anything, my

> toothpaste, etc.. Couldn't hold a pen, button stuff - ya know the

> drill. Doctor said and I quote, " it is a reaction to the

> prednisone. " I'm sure as you may of guessed...the only thing now a

> year after that is I could put you on prednisone for pain. I'm

> scared out of my mind to take that again. When I was on it I felt

> bizarre - not just from the staying up for 72+ hours at a time which

> didn't help, but it made me feel like I didn't know real from unreal

> and it made me angry, etc... I'm desperate and rambling again. I'm

> just really at a loss. Scared! I'm off the depo but the flares

> still come, maybe not as intense and without all the hair loss. I

> finally started thinking that maybe I was sick about 3-4 months

> after the rheumy visit. It has continued now for just over 2 years

> with no end in sight, Today my knuckles are red and my shoulder's,

> knees, ankles, heels, hands, fingers, and hips not to mention my

> imaginary neck injury. I constantly seem to hurt my spine and in

> turnit throughs me into the imaginary flare, you can visibly see the

> swelling (although minor compared to someone with diabetes swelling)

> you can visibly see the redness on all the joints. i don't think my

> pcp is blind other than to me. I just want this all to go away -

> yet, it doesn't. I think that I'm gonna come down with bronchitis

> again as well? They are burning the fields here which has a lot to

> do with that. I finally had to accept that I am sick last year. The

> acceptance has been a little tougher. I think that started happening

> around Febuary of this year and then I was so isolated and more or

> less extremely lonely that no-one believed me and could understand.

> That was when I stumbled upon this group. I can relate a lot of

> my " imaginary stuff " to your stories and felt like someone heard me

> at least and could relate. That has been an extreme help and has

> uplifted me to try wand trudge on. I hope to feel better someday and

> would like to spend my good days advocating for those who suffer

> needlessly. I'm beginning to think that just isn't in the cards for

> me. I can relate to what Loretta said about being mad with or at

> God. I'm not but I certainly question " why " , what did I do that was

> so bad to suffer like this. I've gone back and forth with denial

> only to be slapped in the face with yet another flare. That will

> ground you real quick. now, I guess I am at - I'm sick and no-one is

> gonna be able to help me. I'm not gonna just lay down and die

> though. They are gonna listen to all my imaginary woes until that

> day comes. I say that but, 1/2 the time - okay more than that - I

> just simply don't bother with the doc. He is so put off by having to

> deal with me and I usually can't even see him. That has been part of

> the problem.. He is never available. He will be on vacation....I

> guess he takes a working vacation because he still stands right there

> in the hallway and patients check in to see him. Go figure, that

> has happened about 4 or 5 times now. One would think that if the

> clubbing is indeed from smoking he would at least check my lungs.

> Nope! Hell on my neck injury - I told him that I would get dizzy

> while tilting my head to wash my hair. he said then don't do that

> and that I must have water in my ears. He didn't bother to look

> either...that - I think it when reality really set in. he doesn't

> believe me and has a " tude " and could care less about helping me in

> any way. It was and is still shocking and scarry and real let down.

> Now, I have no more ideas on what to do. I just don't know

> anymore. I am going to counseling. It doesn't seem to be helping my

> head to stop all this. Altering my life, changing my blood,

> disfiguring parts of my body, forgetting accidents that never

> happened, redness, swelling, pain, bone spurs, scoliosis, congenital

> lumbarization of L5-6/S1, knee surgery, lipoma surgery, nervous

> breakdown, skin discolorization, nail ridging, hemangiomas, bulged

> discs, facet disease, stomach problems galore, weakness, fatigue,

> fever, my spine to swell, and chills. I just wish that my counselor

> could speed up me getting a handle on myself to stop all this. I'm

> sure that is the only thing that me and the good ol doc can agree

> on. Ane then again - probably not. Maybe I just should forget all

> this and just do something like go walking or better yet running and

> hiking and shopping and cooking and cleaning and just quit

> complaining. Maybe I'm just a constant complainer who just needs to

> shut her mouth and get over it! I did that last year. It didn't

> seem to help then. But, I guess my head wasn't so off then. I think

> that sometimes I will just insist that he go ahead and commit me.

> I'm sure ECT would make me forget. They could do it with no

> sedation. I can take it! I'm just ranting now. I probably should

> end this novel. My head is telling me crazy things again. My

> fingers are hurting so I better stop. I wouldn't wish any of this on

> my worst enemy. Maybe the doc? Just kiddin' that was a really sick

> joke, sorry. I just hope that all of you can have good doctors - ya

> know one that is still somewhat human and compassionate about his

> fellow man. I wish all the best and pray for a cure. (yeah I know

> there is more money in treating the symptoms) ( my doctor must not

> have heard that yet, oh nope he is smarter - he gets paid for

> nothing! What a good deal for him! I hope that today is a good day

> for each and everyone. God Bless and thanks for letting my head

> complain yet once more! Take care! Kim

>

July 2, 2005