Re: New member/

[Guest guest]

,

I would like to say welcome because I haven't had the opportunity until now. I

also think that you are very fortunate for the doctors you have and the support

from family.

I personally understand feeling helpless and like I can't get the pain under

control. My pain doctor I have now has been the best.

He did surprise me though when I would go back and tell him about how

medications that he prescribed didn't seem to be working. He would add another

medication to help the one I was already taking.

After adding several different types of medications, I can actually sleep about

5-6 hours again. Mind you, I was a person that went down with the sun and rised

with the sun.

Before the doctor ironed out the medication for the reprieve of sleep, I was not

even sleeping an hour at a time. When I woke up, I stayed awake for 30-45

minutes. Right now, I am having a hard time staying awake in the mornings. I

think it will pass when I finish this semester of classes.

My pain specialist said that I was absolutely out of seratonin due to

the loss of sleep. He said that the amount of suffering I am dealing

with is beyond the scope of understanding.

That is where I am fortunate because I have very awesome doctors that

have done so much for me. They both research together and talk about

treatments that I am going to have done and ask the other advice even

though they are in two different specialties.

Lori

> wrote:

>I know I am lucky that I have doctors that are caring and understanding.

Unfortunately they seem as helpless as everyone else.

Since they aren't able to figure out what's wrong, they just throw

pills at me and try to get me through the day

>I think the single biggest frustration in all of this is that without a

diagnosis, I can't try to " fix " the problem, and I feel like I have nowhere to

go from here.

Thanks for the ears and the welcome.

[Guest guest]

Lori, thank you for the welcome.

I do feel lucky with my family and doctors. well, my in-laws, I should

say, as MY family is crazy.

In the past I have had undiagnosed problems that were extremely

frustrating due to disbelief and general disregard on the part of

doctors. Specifically, what was called " chronic nerve damage " and was

a year and a half of pain was eventually determined to be an abcessed

tooth. When I had it removed, the pain stopped. But I cannot tell

you how many doctors, dentists, and specialists in both fields that I

saw before finally getting an answer.

May I ask if you know what's causing your pain? I have had insomnia

for the vast majority of my life, and am only sleeping now because I

take so many medications that cause drowsiness. I've been up and

running since 6:45 this morning and am still awake, which is WITH meds

that are specifically to help me sleep on top of the narcotics.

I take Ambien occasionally, which does help to an extent, but I don't

like being " doped up " when the kids are home, since I need to be able

to wake up if they need me. Occasionally I make my husband completely

responsible for them and just sleep through it all. I have the most

trouble GETTING to sleep.

I have taken to doing a not so great thing, but I've been sleeping

with the TENS unit on. the timer only lasts an hour, so I still wake

up at least once, but I find that it keeps me out of pain for enough

time to get to sleep.

The TENS unit doesn't really help the pain itself, but it's almost as

if it " distracts " my back from the pain. As long as it's running, it

doesn't hurt, I just feel the zaps.

Frustrated right now because PT appointment was a bust, but my

infusion treatment is tomorrow, so keep your fingers crossed that it

is helpful.

[Guest guest]

,

Yes, my pain is caused by RSD in both legs & bone on bone in my right

knee. The RSD is the main reason for me taking all of my medications.

The knee problem is very painful but hopefully that will all come to an

end when my orthopedist replaces it next month on the 15th.

He didn't want to replace my knee until I was closer to 50 (right now,

I just turned 43) but my RSD excellerated the degeneration of the

joint. The osteoarthritis is so much worse in my right knee & hip than

my left ones.

I hope all goes well with your appointment today. I will try to check

my email while out of town for the long weekend.

Happy Thanksgiving,

Lori

wrote:

Lori,

May I ask if you know what's causing your pain?

[Guest guest]

,

Yes, my pain is caused by RSD in both legs and bone on bone in my right knee.

The RSD is the main reason for me taking all of my medications.

The knee problem is very painful but hopefully that will all come to an end when

my orthopedist replaces it next month on the 15th.

He didn't want to replace my knee until I was closer to 50 (right now, I just

turned 43) but my RSD excellerated the degeneration of the joint. The

osteoarthritis is so much worse in my right knee and hip than my left ones.

I hope all goes well with your appointment today. I will try to check

my email while out of town for the long weekend.

Happy Thanksgiving,

Lori

> wrote:

>Lori,

May I ask if you know what's causing your pain?

[Guest guest]

> The knee problem is very painful but hopefully that will all come to

an end when my orthopedist replaces it next month on the 15th.>

Lori, that sounds promising! I am so frustrated with not knowing

what's wrong. That bothers me (psychologically) more than anything else.

I don't know much about RSD. Is it localized? Or does it spread to

different areas?

I had Lyme Fisease many years ago as well, and have had joint pain

since them, but it's more discomfort than " pain " . I now test

completely negative for Lyme titers.

I feel neither better nor worse after the infusion. Although I am

tired after the numerous antihistamine doses. We'll see what happens.