Pain Meds

[Guest guest]

I've never really had any relief from medications like neurontin or

the trycyclic anti depressants.

I was wondering if anyone has used Narcotic type of pain relievers

for Vaginal/Vulvar pain. Not that I'd want to go this route and I

hope to heal from this pain eventually - but if for some reason it

becomes permanent I would definately consider this.

I had oral surgery a couple weeks ago and was on Darvocet - not only

did it help all of my other Lyme aches and pains but it helped my

vulvar pain significantly. I wonder if I could " turn off " the pain

for a significant amount of time if it would go away. I wouldn't

even try this until after I heal my other health issues as I feel my

V pain could be a symptom and will go away with treatment (I pray).

As sick as I've been with my Lyme Disease this vulvar pain is my

biggest issue. I am blessed to have lowered my pain levels from my

early days but I still can't even wear panties without suffering

later on. (panties that are four sizes larger than I would normally

wear)

My Lymie friends talk about being in their PJ's and sweats due to

their pain but that isn't even an option for me. At home it's

nighties (in the summer I am blessed to be able to wear dresses!) and

when I go out it's a huge challenge to figure out what I can wear. I

dread the winter coming.

Thanks for letting me vent - I'll get off my pity potty now!

[Guest guest]

I use Narcotics (Vicodin) a lot. It is a lifesaver. The best thing for

me is that it makes me feel like it's not the end of the world. Kind

of an " ahhh " feeling when I'm feeling desperate.

p.s. these drugs have a down side which I think you know.

>

> I've never really had any relief from medications like neurontin or

> the trycyclic anti depressants.

>

> I was wondering if anyone has used Narcotic type of pain relievers

> for Vaginal/Vulvar pain. Not that I'd want to go this route and I

> hope to heal from this pain eventually - but if for some reason it

> becomes permanent I would definately consider this.

>

> I had oral surgery a couple weeks ago and was on Darvocet - not only

> did it help all of my other Lyme aches and pains but it helped my

> vulvar pain significantly. I wonder if I could " turn off " the pain

> for a significant amount of time if it would go away. I wouldn't

> even try this until after I heal my other health issues as I feel my

> V pain could be a symptom and will go away with treatment (I pray).

>

> As sick as I've been with my Lyme Disease this vulvar pain is my

> biggest issue. I am blessed to have lowered my pain levels from my

> early days but I still can't even wear panties without suffering

> later on. (panties that are four sizes larger than I would normally

> wear)

>

> My Lymie friends talk about being in their PJ's and sweats due to

> their pain but that isn't even an option for me. At home it's

> nighties (in the summer I am blessed to be able to wear dresses!) and

> when I go out it's a huge challenge to figure out what I can wear. I

> dread the winter coming.

>

> Thanks for letting me vent - I'll get off my pity potty now!

>

[Guest guest]

Oh, , thanks for the good word! I didn't know if anyone

prescribed these type of drugs for V pain. I know the " down " side

and I'm already on Paxil (15 years or more) and Ativan and/or Xanax

so to go with a Narcotic will be a big decision and not something I'd

do right now. It gives me hope.

Does it take away all the pain or just take the edge off? Can you

wear normal clothing, etc.

I have had experience with weaning down and off Ativan/Xanax so I'm

comfortable with that. I've also gone of Paxil cold turkey with

success but it was so long ago that I have no idea if it would be a

problem for me if I needed to go off now. The stats I think are that

30% of Paxil users have withdrawl syptoms (and they aren't pretty).

I had one heck of a time weaning off of Neurontin- I was only on it

for three or four months and it took almost that long to wean off of

it.

I remember you from way back. I had my first appt. With Dr. H at U

of M the day you had your surgery. I only ended up seeing her twice

and realized I was helping myself better than she was. And then Lyme

became my biggest issue. The NP tried to take credit for my

improvment (she was going to write it in the file) when I told her

the Neurontin didn't work and I was weaning off of it but that I had

changed my diet (not a diet they recommeded, either). I think their

stats for improvment and decreasing pain are very overstated!

Thanks for you response.

Molly

> >

> > I've never really had any relief from medications like neurontin

or

> > the trycyclic anti depressants.

> >

> > I was wondering if anyone has used Narcotic type of pain

relievers

> > for Vaginal/Vulvar pain. Not that I'd want to go this route and

I

> > hope to heal from this pain eventually - but if for some reason

it

> > becomes permanent I would definately consider this.

> >

> > I had oral surgery a couple weeks ago and was on Darvocet - not

only

> > did it help all of my other Lyme aches and pains but it helped my

> > vulvar pain significantly. I wonder if I could " turn off " the

pain

> > for a significant amount of time if it would go away. I wouldn't

> > even try this until after I heal my other health issues as I feel

my

> > V pain could be a symptom and will go away with treatment (I

pray).

> >

> > As sick as I've been with my Lyme Disease this vulvar pain is my

> > biggest issue. I am blessed to have lowered my pain levels from

my

> > early days but I still can't even wear panties without suffering

> > later on. (panties that are four sizes larger than I would

normally

> > wear)

> >

> > My Lymie friends talk about being in their PJ's and sweats due to

> > their pain but that isn't even an option for me. At home it's

> > nighties (in the summer I am blessed to be able to wear dresses!)

and

> > when I go out it's a huge challenge to figure out what I can

wear. I

> > dread the winter coming.

> >

> > Thanks for letting me vent - I'll get off my pity potty now!

> >

>

[Guest guest]

I just wanted to throw my two cents in on the narcotics for pain thread.  I have rheumatoid arthritis as well as VV. There was a time the burning was so excruciating, the only thing that controlled the pain was oxycontin.  I was taking 20mg2xday while I was taking elavil and going up in small doses to get to a level that it cut the pain. Oxycontin CUT the pain entirely.  When the elavil kicked in (about 6-8 weeks later) I was able to just stop taking the oxycontin.  No weaning down on the oxy...I might have gone down to like 20mg1xday for a few days...but it was no big heartache of being addicted.  Since then, when I have flairs, tramadol 50mg2-3xday seems to work very well while I start cranking up the elavil again to calm the flair up. Cuts the pain entirely.  Narcotic pain relief has saved my life many times--either during an RA flair or a VV flair.  I feel blessed that I have never become addicted, can literally stop the day the pain stops--and so I am able to manage my pain very well.  I have Docs that manage my RA and my VV with great compassion and understanding.  My PCP manages the VV aspects and she is wonderful.  She says I am not the only VV patient in the practice...but I wonder.  isn't it like us to think we are the only ones so afflicted?  To feel so abnormal, alone ...and strange?  I think more women than we suspect suffer with us...through this forum we are able to talk and vent about it...

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[Guest guest]

I wonder if I could "turn off" the pain

for a significant amount of time if it would go away.

It's interesting that you mention this, because this is the exact premise behind elavil and other tricyclic antidepressants to treat VV.  I know many women have not had success with these meds for VV, because of the side effects.  I toughed it out with the side effects initially--and now when I have flairs..I have to re-adjust to get to a higher level.  When I do have flairs, I can't quite pinpoint the trigger...I have decided over the years of dealing with this that my trigger is a combination of hormones, stress, some nerve trigger, certain foods.   It's not a bad theory that if you can interrupt the pain signal, it will "turn" off and thus the pain will stop.  It's possible because pain generated by nerves acts like VV in other respects,,,it's a big jumbled mystery, I guess--but you suggest a good theory.

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[Guest guest]

It's not a bad theory and in fact it does work for some, if you can also address most of the underlying triggers. Honestly, there's no point in being a hero. Take the pain meds-any pain meds that help. Also try and find your triggers, and do holistic activities that help build your tolerance to pain such as pt, exercise, counseling and meditation. You will figure it out and get well again.

Lindsey

[Guest guest]

Hmmm.. perhaps I should try Tramadol - I have a ton of it. I usually

only take .5mg w/exstrength Tylenol for severe (Lyme) headaches. The

problem is that it makes me very constipated which makes my V pain

worse! I think I may try it and use my Colon Cleansing products to

keep " going " . The trycyclics were a problem because I've been on

Paxil for maybe 20 years and it helps my depression/anxiety. This

runs in my family and is aggravated by the Lyme.

If it's not one thing it's another!

>

> I just wanted to throw my two cents in on the narcotics for pain

thread.  I have rheumatoid arthritis as well as VV. There was a time

the burning was so excruciating, the only thing that controlled the

pain was oxycontin.  I was taking 20mg2xday while I was taking

elavil and going up in small doses to get to a level that it cut the

pain. Oxycontin CUT the pain entirely.  When the elavil kicked in

(about 6-8 weeks later) I was able to just stop taking the oxycontin.

 No weaning down on the oxy...I might have gone down to like

20mg1xday for a few days...but it was no big heartache of being

addicted.  Since then, when I have flairs, tramadol 50mg2-3xday

seems to work very well while I start cranking up the elavil again to

calm the flair up. Cuts the pain entirely.  Narcotic pain relief has

saved my life many times--either during an RA flair or a VV flair.

 I feel blessed that I have never become addicted, can literally

stop the day the pain stops--and so I am able to manage my pain very

well.  I have Docs that manage my RA and my VV with great compassion

and understanding.  My PCP manages the VV aspects and she is

wonderful.  She says I am not the only VV patient in the

practice...but I wonder.  isn't it like us to think we are the only

ones so afflicted?  To feel so abnormal, alone ...and strange?  I

think more women than we suspect suffer with us...through this forum

we are able to talk and vent about it...

>

>

>

>

> 0A

>

[Guest guest]

I'm pretty sure that my Lyme or a coinfection called Bartonella is

the cause of my V pain - it is symptoms and I've meet quite a few

other " lymies " on line that have it, too. I've heard of some total

relief - but most of the women on line are there because they still

have issues.

I'm SO tired of this pain that pain meds may just be the ticket.

>

> It's not a bad theory and in fact it does work for some, if you can

also address most of the underlying triggers.  Honestly, there's no

point in being a hero.  Take the pain meds-any pain meds that help. 

Also try and find your triggers, and do holistic activities that help

build your tolerance to pain such as pt, exercise, counseling and

meditation.  You will figure it out and get well again.

> Lindsey

>