Re: Welcome to chronic_pain@onelist.com

[Guest guest]

Carol, Thank you for such a warm welcome and I have already received heart

felt suggestions of who would like me to reach out if I need a friend to hold

my hand or just a shoulder to cry on. I know your group is exactly what I

have been looking for as far as support and love of another. Regards, Theresa

TMW

[Guest guest]

Hi Runner,

My name is Kathleen and welcome to the list. It is where I have received

numerous hours of hope, information and grins. I look forward to hearing

from you via our list.

Kathleen

[Guest guest]

I'm so glad to back on this list. When I changed providers I

lost almost everything when changing over. Is there

anyone on the Fentyl patch. My headaches seemed to have

increased since I've been on the patch. The rest of my pain

is better. I was wondering if anyone else had headaches

with them.

Tonia

[Guest guest]

Tonia, Yes, I am on the Fentynl patch for 8 days and yes I get headaches all

the time. What I do is buy Execedrin for Headaches- Non Aspirin. If I take

one in a day, it is plenty and my headache doesn't come back again until the

nest day and I noticed that it is coming back not as strong as the day

before. It may be one of those temporary symptoms until your body gets used

to getting this type of medication thru your skin.

I also take ms-contin 100 mgs 3x

daily or every 8 hours at 6 am, 2 PM 10 PM. This way when I am hospitalized,

I am on the same exact schedule most hospitals in the country use to give

medication due to their shift change. So I do not get a sudden shock in the

hospital and suffer needlessly until almost 12 hours before I even see other

medications I also take. By the way, with all this mediation as ms-contin

is morphine sulfate and fentynl is an opiod analgesic you would think I was

pain free. No Such Animal to us RSD Survivors. I believe the pain will

always exceed the medication as it is so HORRIFIC, that if we truly laid in

the hospital bed without anything at all, and we had a button to press to end

our lives with dignity, think how many of us would eventually do it

regardless of how devoted we re to religion, our family, our country. This

is scary. Yet the United States can find millions sometimes

billions to lend to other countries. Why don't they dole some of that money

over to research so instead of us looking in the mirror knowing what we have

will never be cured, we could be looking in the mirror in hopes that

eventually they may come up with a pill to ease everything including the pain

similar to how someone has heart disease, they have a pill to take each day

to keep it under control?

If RSD was ever taken seriously by most Neurologists and general doctors and

surgeons who believe it is more psychological than real pain, we would have

already contained the pain level and would have medicine focused on the pain

but the real problem. The destroying of a human body piece by piece and in

front of their whole family to watch until they can no longer lift their arm

due to the muscle atrophy ate away the muscle so they are unable to lift

their arms or legs.

Who would like to live like this? And that is not even half of what it does

to you, including losing your family, your home, your money and are left to

lay in some nursing home, I presume. Until you decide to keep enough

mediation until one day you just take them all and go into a deep calm sleep

hoping God will forgive you and so will your family, friends and most

especially your spouse & children....................................

How

far away are we, when we are admitted to a hospital, and the Doctor who is in

charge asks you to spell Reflex Sympathetic Dystrophy???

your friend in pain, with a loving caring husband who sticks with me

like glue and two children ages 25 & 22 and two beautiful granddaughters one

will be 5 who was born on my 39th birthday, ( I am 43 going on 44, Sept 8th)

and the second will be baptized on this Sunday at 10 weeks old. These are

some of the reasons and the most important reasons I take the RSD pain and go

on, each moment at a time, or each second and a half, and sometimes I have

made it to two whole minutes. My family and loved ones are the reason I

exist, to have the love and give the love we each deserve. Theresa Gratz

xxxx ooo

[Guest guest]

>Hi Theresa,

Just wanted to compliment you on the improvements in your posts to

our list. They are becoming much more readable.

Thanks!

Ken

[Guest guest]

Hi Tonia,

I use the Fentyl Patch (75). I suffer with Migranes and headaches, but I've

always had them so I can't say if they have increased since using the patch.

All I know is that the patch works for me and the best part of it is I don't

have to remember to take meds. I would always forget to take them and then I

was on a rollercoaster of pain and never could catch up with the pain.

Best Wishes

Kathleen

[Guest guest]

The patch has been a blessing. With the meds I would wait

to long to take them and then it seemed forever for it to

work. I take atwo other kinds of pain. Locet10 for

breakthough and darvacet for mild pain increases. Which

happen more often. I am nervous about asking the doctor to

increase the patch. Tonia

[Guest guest]

Hi Tonia,

What strength is the patch your using? It took me a few months to get the

right dosage for the patch, so I wouldn't hesititate asking your doc.

Kathleen

[Guest guest]

Hi Tonia,

What strength is the patch your using? It took me a few months to get the

right dosage for the patch, so I wouldn't hesititate asking your doc.

Kathleen

[Guest guest]

It's 75. When I seee the doc next week and will ask if he

will up it. We been going at this slowly and a little at a

time, try to keep the state from coming down on us. I'm on

medicaid so have to approach with caution on what the'll pay

for without a lot of extra paperwork to do and testing

looking for a way to get me off it as it cost so much.

Tonia

[Guest guest]

Hello everyone My name is Chrisy Shamblin I prefer to be called Raven Iam 24

yrs old live in charlotte nc with my life partner Arlaine Rockey(37yr) and

our two children; Marissa who is 6 and is 3.Okay to the point. My

mother who is 43 her name is Shamblin and lives in Point Pleasant, Wv,

has MS when she was my age she was having problems and the docs told her it

was in her head, so now she has MS at 43 because they could see it finally on

the MRI.So anyways, I was just hospitalized few weeks ago due to the fact I

was

having symtoms of MS they ran tests on me then discharged me told me it was

all in my head they said it was due to my depression and anxiety well ive

been the happiest and calmiest in the last year since i was born and I find

it hard to belive when I can't walk that its in my head when i cant sleep

cause my legs are tingling its in my head or when im standing in a public

place and a stranger ask me if I know that my neck is jerking i cant belive

that its in my head I have tons of problems way to many to go thru hear..like

not being able to feed myself at times, taking my little grrls meds , severe

fatigue, falling easy on days i can walk cause my bodyparts dont want to

listen to what my head tells them to do waking up at night to thinking my

arms are gone because i cant feel them, or my face is numb and i taste blood

in my mouth from where i was having tremors and bite my tounge and to think i

wouldnt known if i didnot see the blood on my finger or the fact that my

babies see me walk and say mommys walking today only to know soon ill be in

the bed upstairs in pain,or trying to feed my kids breakfast and having to

ask them to help cause i cant open things, okay ill stop now they say im

crazy its in my head and refuse to give me pain meds,Im seeing a holistic

doc and he is telling me its ms.Dont know where to turn at this point.

I was wondering if any of you out there have urinary troubles with MS?

I saw uroligist today <still in the phase of getting dx > and test showed

bladder is not empting right - its only emptying 1/3 of the way! Now I

need to check out my kidneys. He put me on antibiotics for two months while

they run tests but he thinks its part of the first stages of MS, or at least

a warning light that I have MS. He told me docs wont dx MS until they have

lesions they can see..sigh..told it could take a while for them to show up

ahhh...he started talking to me <u'll have to forgive me I cant spell> about

learning how to catherize myself... is there anyone out there who can help

me ...I'm scared

hanging by a shoe string,

Raven

[Guest guest]

Dear Raven_____

I can sympathize with your problem with the doc on the DX of

MS. You said yoiu had test run? Did yoiu ever have a MRI done? as I had

that done once when they suspected I had MS but I did not. I have RSd which

is another disorder..which silently invades the body as MS does so I also

as many others have the docs tell us it is " all in our head " until it

becomes a stage 2 and then they see the actual symptons and then bleive the

patient. It is so awful PPl have to go through this...If yoiu never had a

MRI I think it would be a good test. as it seems this test does show the MS

gene....anyway_____if u ever feel like writing me , please do, and I hope u

get this straightened out so you can get appropriate help.....soon..(smile)

>was

> having symtoms of MS they ran tests on me then discharged me told me it was

> all in my head they said it was due to my depression and anxiety well ive

>

Jazz________Canada~~~

Health, Peace and Dreams____

1cq # is 11808881 add me.

[Guest guest]

Hi Raven,

I am a nurse and I thought I would answer your question about MS. It is

very common for MS not to show up on the MRI or any other tests in its

earlier stages. The spots or plaques that occur in the brain are not always

seen on the first test. Make sure that if further MRI's are done that they

compare to the first one. Symptoms include: incoordination, weakness,

paresthesias (numbness, burning and tingling), speech disturbances, and

double vision. Most patients experience remissions and exacerbations.

Since your mother has it, I would think this would also mean that you are

more likely to have it. The cause of MS is unknown, but it is thought to

run in families.

Whatever it is it may be in your head in that it may be a neurological

disorder, but it is not a psychiatric disorder. I get so tired of doctors

putting us into the category of crazy or making it up just because they

cannot figure out what is causing our symptoms. Don't give up. I would

seek a second opinion.

Learning to catheterize yourself is scarey, but not that big a deal once you

have learned to do it. Hang in there and feel free to ask questions.

Gentle hugs,

Fern

[Guest guest]

Hi Chrissy,

I know a lady who put a hospital bed in her living room so she could be

with her son more. Certainly not a fashion statement, but in her situation

I thought it was innovative.

Ken