Update C. pain specialist pain patch ?????s

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all

Today is day 8 of the pain patch, duragesic 25 mcg/hr and let me tell

you that it has been an adventure. Prior to the patch I was taking 7-8

total narco 10/500mg from what I have been reading on the boards after

searching this seems kinda high - is it? I know the pain specialist

and pharmacist were concerned that I not take more then 4grams of

tylenol a day.

I am taking 3-4 (1/2 pill doses of the 10/500) for breakthrough pain

each day so far.

So, the first day I was so wiped out that I slept the entire day

except for a few hours. THank you God that I had the sense to wait

until my husband was home all day to start this new drug!! I was in

horrible pain and my new pain specialist wanted me to avoid if I could

taking the Narco so we could test the effectiveness of the new drug. I

did the best I could on the first day but on the second in tears and a

pain level of 9+ all day I finally took the first dose of narco for

pain- took total of 2 that day and did a little better - again took

these in 1/2 pill doses.

Since then I have still remained in steady pain at high levels, and

finding this frustrating. I have faith in my newest specialist (#5 on

the speciality list of team) as he has suffered from chronic pain

himself and said in our first meeting- not everything works for

everyone and we can always go up on the dose of the patch but we have

to start at the 25mcg/ hr. He spent a great deal of time with me and

let me know that the amount of tylenol I was betting from fast acting

opiates was worrisome and the last thing that I needed was liver

problems- as I have enough to deal with- AMEN:-)

Lupus, Fibro, Reynauls, UMCTD, Sjogrens, Chronic Migraines, IBS,

percarditis, chostocondritis (sp)

Regarding the new pain specialist approach I liked it but I was very

nervous about switching medications. He reassured me as best as he

could that we will not leave me in pain and consistent pain relief was

the goal instead of the chasing the pain and or peaks and valleys

caused by narco. Rhumey- who got a frantic pain filled worried patient

call- took time to speak to nurse about the worries I had and please

told me not to worry that he knows I will do great on patch- he is

also great. His nurse is beyond the best I have ever worked with and

she always makes time to help and make you feel better emotionally as

well.

The pain specialist says, we will approach this pain symdrom and

chronic pain in mutlitple ways to improve the quality of my life. My

God I cannot even imagine what not being in pain feels like anymore.

It has been so many years.

Any way at the instute for pain they have a pain physcologist,

physical therapist, as well as other methods such as massage,

chiropractic, accupuncture though don't quote me on the last 3 for

certain. He mentioned physical therapy for me maybe twice a week. I am

all for whatever works however, I usually do not get out of my house

twice a week beyond picking up my daughter from school two blocks

away...

Besides the fact that I have not seen significant reduction in my pain

at this point the other factor that is driving me nuts is that I

cannot take my hot baths!:_( I am a major bath person, and usually

take 2 a day everyday. One week without my baths and I miss them so

much.

Can anyone please shed some light on thier own experience with the

pain patch? What dose are you at now? What breakthrough meds do you

utilize?

I am keeping track of the pain along with any activities and

breakthrough medication taken to share with doc next visit- this

month. Hopefully this will help us get this pain under control/

So, not sure if this is related or not but for months now my skin has

been in terrible shape - this we (me the mouse in my pocket and the

docs) blame on Lupus, sun, and prednisone but my goodness my skin is

covered in acne and I hate it. Now since being on the patch I seem to

be getting large cyst like bumps in areas of glands or lymph nodes???

Anyone else seeing this or experienced it before?

I hope you all are doing well as can be as for me and my little family

we are focusing on what we can do instead of what we (I) cannot and

taking it day by day.

I look forward to your replies.

C.