Hello Everyone! New Member here!

[Guest guest]

Moderator's note:

Hi Carol, welcome to the group. We have another Carol, so will you sign your

name Carol CA, or something like that? This should avoid confusion.

Kaylene

Hi there,

My name is Carol, I am a 38 year old from Montreal, Quebec, Canada.

Five years ago I had a kidney stone turn my life into a nightmare.

Although the doctors tell me it is long gone, I still suffer with

constant pain. In the beginning it was a little each day, which got

worse over time. Now there is not a moment that I don't have pain.

I have gone through several Urologists who have almost accused me of

only seeking drugs, or of it being in my head. I even reached a point

where they almost had me convinced it was in my head!

They also tried to convince me it was my back. Last year when someone

hit my car, I found out what back pain was like, and it was nothing

like what I suffer with.

Until this day, the Urologists I have seen cannot figure out what is

wrong with me. Once I have challenged them too much, they give up on me.

With the tests they have done, they see nothing that would warrant

this pain. No blockage, nothing. Most of them do not believe that a

person feels pain inside their kidney, it supposedly is only when

there is a blockage.

Next month I am finally going to see a Nephrologist, to see if maybe

I'll have more success with them, but my expectations are low.

I am so frustrated that they cannot find what is wrong and because

there is no blockage, there is no justification for surgery or

anything else.

Each day the pain just seems to get harder and harder to cope with. I

know that I am not taking enough pain medication, I try my best to

suffer until I can't take it anymore or am about to be sick.

I know this is not the right way to manage my pain, but I live each

day worried that the only doctor that somewhat believes me (my GP) may

also give up on me and stop giving me pain medication, so that's why I

try make it last.

Can anyone suggest ways to help cope mentally with this pain? I know

people around me just don't seem to understand what I live with day in

and day out.

I almost always try my best to hide my suffering from coworkers and

others. I always " act " happy-go-lucky except for the days when I can't

mask the pain. Then people I have explained over and over that I live

in constant pain ask me why I am so quiet or distracted. They just

don't get it.

That is why I sought out this group. Reading through some of the

posts, I see everyone suffers through different diseases and

ailements, but we all have the common denominator - pain.

I need to talk with people that understand how hard it is every day.

So any comments, suggestions, stories - anything are welcome.

Thanks for reading through this long post. I will try shorten them in

the future.

Carol

[Guest guest]

Hi Carol, my name is Carol also. I sign my posts Carol (OK) This helps when

there are others with the same name.

You never said what pain meds you are taking but I can tell you from

experience that having some of the medication in your system at all times helps

control it so much better than waiting until you are sick before taking another

pill.

I take methadone for the long term pain and then I take oxycodone for the

breakthrough pain. I also take lyrica, cymbalta, and a couple of other non

narcotic medications. Taking all of this and keeping it in my system helps the

most.

If you need anymore help just e-mail me anytime.

Thinking of you,

Carol (OK)

[Guest guest]

Hello new member Carol-

I understand your misery. Unless people can actually see a physical reason

for why you might be in pain, they don't understand. Most people don't want to

have to deal with a sick person or even know how to respond when you are

obviously ill.

For my own situation, I have learned to try and keep my problems to myself and

wear the " smiley face " . But inside, I have become another person entirely.

Chronic pain actually does change the brain chemistry. I have been on so many

different types of meds and nothing has helped-I fear the side effects of drugs

as well. They all pose a carcinogenic risk.

Somehow, you have to try and learn to detach. Learn to meditate, exercise,

read-anything to try and take your mind off of your pain. I know that it is

hard. If you are depressed then maybe a good course of an anti-depressant or

counseling could help you. This forum may give you somewhere to vent with like

minded people.

Try not to let your pain define you as a person. You are not your pain. You

are a lovely lady named Carol with much to offer who just so happens to have a

health issue.

It is too easy to become bitter. I know because it has happened to me and I

struggle each day with my own issues and the uncertainty of what tomorrow has in

store for me. But I can only take one day at a time. Be strong Carol-keep up

the good fight. Don't let those around you drag you down.

Louise

>Carol wrote:

My name is Carol, I am a 38 year old from Montreal, Quebec, Canada.

Five years ago I had a kidney stone turn my life into a nightmare.

Although the doctors tell me it is long gone, I still suffer with

constant pain. In the beginning it was a little each day, which got

worse over time. Now there is not a moment that I don't have pain.

[Guest guest]

Dear Carol from Canada,

Welcome to the forum. I am truely sorry for your pain. I hope that

they can find out what is causing it for you soon.

Cheryl V

[Guest guest]

> You never said what pain meds you are taking but I can tell you

from experience that having some of the medication in your system at

all times helps control it so much better than waiting until you are

sick before taking another pill.

Hi Carol, thanks for your reply.

I was taking Hydromorph Contin and Lyrica and then if there was still

pain, I would take Dilaudid. Now I am just taking the Dilaudid since

after two months, the other two didn't seem to make a difference if I

took them or not.

I am going to my GP next week, so I am going to try asking him for

something else. The only thing I know that does touch my pain if I

take enough of it is the Dilaudid, so I don't want to lose that.

I was wondering about a patch for pain - has anyone had any bad/good

experiences with them?

Thanks,

Carol - CDS

[Guest guest]

> Welcome to the forum. I am truely sorry for your pain. I hope that

> they can find out what is causing it for you soon.

> Cheryl V

Hi Cheryl,

Thanks for your support. I am hoping so too.

Carol - CDS

[Guest guest]

> I was wondering about a patch for pain - has anyone had any bad/good

> experiences with them?

Hi Carol,

The patches are called Duragesic patches and are coated with a narcotic called

Fentanyl. I

am still going through a lot of pain from SLE and was taking Vicodin, then

Norco, then

Methadone, and then to that patch.

The 1 thing I was going to say about the patch is, unless you are taking really

really high

doses of some other very strong opiate, then be sure to ask your Dr. to start

you off at the

lowest dosage they have available.

Just before the patch, I was taking Norco which is mostly just like Vicodin. And

my doctor

started be at the 50 mcg/h one. The dumb thing I also did was to start it on a

Saturday of

a 3-day holiday weekend. So I couldn't get a hold of my doctor until the next

Tuesday,

which is a long time if something goes wrong. So, start it on a monday.

About the doseage, I think they make a 15 mcg/h one. If not I know there is a

25 mcg/h

one. So like I said above unless there's a major reason to start at a higher

level, get the

lowest one. Here's why,

I put it on, and for about 18 hours, pretty much just 1 day, I was fine. It

didn't really help

with the pain yet but I thought I was lucky and it was just going to continue to

slowly

increase and help over the next couple days. But when I woke up the next

morning, I felt a

little nauseous. Around 11am of that day, so about a day and half from when I

first put

the patch on, I got VERY sick. Horribly sick.

I couldn't stop throwing up for hours and literally felt the worst I can

remember. When

thinking back afterwards, I honestly don't even know if it helped the pain at

that point

because I was so sick I wasn't even thinking about it. But I tried to carry

through and leave

it on hoping it would be better. After about 8 hours of throwing up nonstop, I

couldn't

take it anymore and removed the patch.

About 4 hours later, I was finally starting to feel much better. The next day

felt like a bad

hangover, and the next was almost back to normal.

My point here is not to scare you off or away from these patches. They are

supposed to

work very well and lots of people on here I think use them and get lots of

relief from them.

In fact I'd like to try it again sometime and hope that starting at a lower dose

and some

anti-nausea meds will help.

Sorry for the long message. My main suggestions then would be to start at the

lowest

dosage available, definitely do not start on a weekend or even friday, and

definitely ask

the doctor for some anti-nausea medication and have it filled before starting

just in case

you need it. That alone probably would have helped a lot for me, but my doctor

didn't give

me any.

Good luck and let us know if you do try it.

[Guest guest]

previously written> I was wondering about a patch for pain - has anyone had any

bad/good

> experiences with them?

Hi Carol,

The patches are called Duragesic patches and are coated with a narcotic called

Fentanyl. I

I have been on these patches a couple of different times. The first time i

started on 25mg one and worked up to 75 mg one. I went off the patch when I

became skin sensitive to it.

The second time the dr. started me on a 100mg one. I was a little aprehensive

of that large a dose. However, it was great. I used it for several weeks, until

the skin sensitivity once again reared its head. I never had any side affects

either time, with the exception of the skin reaction.

Just wanted to throw in my two cents

Hoping for a pain free moment for all.

Calle//Carin in AZ

:

[Guest guest]

Welcome to the group Carol! I'm sorry for the pain that brought you here, but

I'm glad you found the group and joined! This is a wonderful group with

wonderful people!

I am so sorry you have been going through so much. I hope things begin to get

easier for you soon!

Again, welcome Carol!!

Love,

Becky in SD

Carol wrote:

My name is Carol, I am a 38 year old from Montreal, Quebec, Canada.

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