Pain

[Guest guest]

Ohhhhhhh.... Janalise if you sneak back on and read this! Get thee to emergency! Chest pains are not something to ever take lightly! It is better to be in the ER for 6 hours and be safe, then not to go and have a heart attack! I am glad I went when I had chest pains.... please... if you still have them... go get an ECG.....

Love ya

Aisha.

___________________________________

*Medical Resources and Support*http://www.elderwyn.com/medicallinks

*Aisha Elderwyn*http://www.elderwyn.com/aisha

[Guest guest]

Dear Lee,

Sorry to hear you are struggling with so much pain. Perhaps Tina1 can help you with her pain doctors? Maybe they can help? The only thing I can think of is warmth like a hot water bottle or hot pack?

I hate lying around like a fat lump too. Its really frustrating cause there is so much you want to be doing.

Being in Pain is so exhausting. I guess you have tried every med there is? Where do you get the pain again, sorry I have forgotten.

Hope you are in less pain when you get this.

Thinking of you,

Aisha.

[Guest guest]

Thanks, Sweetie! I have pain from the right side of my neck, down my right arm and in my right hip. I am "fortunate" that my back doesn't have pain. Normally, curling up with a heating pad is helpful but it has been too hot and humid. I do feel a tad better today. Hope I can get out a bit. Love, Lee

Aisha Elderwyn <aisha@...> wrote:

Sorry to hear you are struggling with so much pain. Perhaps Tina1 can help you with her pain doctors? Maybe they can help? The only thing I can think of is warmth like a hot water bottle or hot pack?

I hate lying around like a fat lump too. Its really frustrating cause there is so much you want to be doing.

Being in Pain is so exhausting. I guess you have tried every med there is? Where do you get the pain again, sorry I have forgotten.

Hope you are in less pain when you get this.

Thinking of you,

Aisha.

[Guest guest]

lay down

until that positioin puts me in tears and then I will be back here... Tonight

I may try 1000mg morphine.

=o|

Jana-

If you are

in that kind of pain, you need to go to the ER because that much Morphine

is more than I have ever heard of someone taking. And it is so dangerous!

I know you are ready to give up, because of the pain both physical and

emotional (family attitudes thing), but Morphine is not something to mess

around with. And if your death is ruled a suicide, then if you have

life insurance, there is a chance that whomever is your beneficiary would

never see a dime.

Tomorrow I am

supposed to meet with an anesthesiologist who will talk to me about

2 pain reief methods he doesn't want to do and I don't want done - but

to humor my DAMN doctor I will be rolled to the car, ride 8 miles, endure

#$%@$^@to

have him say I am not a candidate for an intercostal nerve block and I

refuse to do an epidural in the thoracic level...

Are you talking

about transthecal route of medication? Constant flow of narcotic

medication into your spinal column?

Then I will come

home and I am seriously thinking of asking my family to go out to

dinner and just let me sleep till morning and do jusst that - go to sleep!

=o)

nana jana

You are scaring

me. I haven't known you for very long, but I would miss you!

I don't

know what you are going through, but I am always willing to listen.

I'll even pay for the phone call if you want to talk on the phone... Minnesota

to Iowa phone calls are nothing compared to losing your life!

I hope you

get some pain relief, but I don't recommend taking 600mg and definitely

not 1000mg of Morphine!!!

No matter

what,

Love Always,

Anne

[Guest guest]

Other than acupuncture is there anything else to ease pain, like some herbs

or supplements? Thanks,

KAT

The cayenne doesn't seem to be working !

[Guest guest]

I have had arthritis in my feet and ankles for years.

Glucosamine/chondroitin made

a tremendous difference, but still had pain when walking. Then I discovered

MSM

and have had no pain at all for the past year and a half. You can find much

about

MSM on the web, and some of the people on this forum can tell you more about

it.

I think it is marvelous stuff. It's not expensive, either.

Dorothy

[Guest guest]

> Other than acupuncture is there anything else to ease pain, like some

herbs

> or supplements? Thanks,

> KAT

> The cayenne doesn't seem to be working !

Try some DLPA, dl-phenylalanine. Take 500 mg twice a day on an empty

stomach. If it doesn't help with three weeks, it probably wont. Chance of

success with DLPA - 70%. taking a little vitamin C with it will help

absorption since it is an amino acid. It's also great for depression.

Works almost 100% there.

JP

[Guest guest]

> I have had arthritis in my feet and ankles for years.

> Glucosamine/chondroitin made> a tremendous difference, but still had pain

when walking. Then I discovered > MSM> and have had no pain at all for the

past year and a half. You can find much > about> MSM on the web, and some

of the people on this forum can tell you more about > it.> I think it is

marvelous stuff. It's not expensive, either.

> Dorothy

Only a couple things to consider in relation to the above supplements which

are all good by the way: Colloidal minerals and Knox gellatin, which I

believe is chondrotin sulfate basically. Probably any number of

combinations of all of the above would be helpful. One thing, once relief

of pain is reached, I've heard that if you stop all these supplements,

particularly the colloidal minerals, the pain can come back with a vengence.

JP

P.S. Get your feet adjusted by a chiropractor too.

[Guest guest]

> > Try some DLPA, dl-phenylalanine. Take 500 mg twice a day on an empty

stomach. If it doesn't help with three weeks, it probably wont. Chance of

success with DLPA - 70%. taking a little vitamin C with it will help

absorption since it is an amino acid. It's also great for depression.

Works almost 100% there.

JP

> Unless you are taking it with your aspartame cocktail(diet coke,

> etal), then depression can be overwhelming, among other things:)

>Deb

I am strongly against Diet drinks. I had some aspartame related symptons

years ago before I knew of the possible side effects.

With DLPA, used off and on over 18 years, I've seen great results though.

One thing about it, the original information about DLPA explained how, once

the pain relief is gained, you can go on a maintenance dose of DLPA which

can be as low as one capsule every third day. Not only is it less likely

then to unbalance body chemistry, it's a lot cheaper!

JP

[Guest guest]

A caveat about phenylalanine is that it degrades to form formaldehyde

(that's right, embalming fluid) in your system. That's probably why it

kills ants.

A study of MS patients indicates that in a majority of cases - the figures

escape me now (75%-85%) the MS was misdiagnosed, it was really formaldehyde

damage in the brain.

Limit your use of this artificial sweetener even if it is an amino acid.

Need articles? There is a wealth of material on the web.

ciao

Duncan

> Other than acupuncture is there anything else to ease pain, like some

herbs

> or supplements? Thanks,

> KAT

> The cayenne doesn't seem to be working !

Try some DLPA, dl-phenylalanine. Take 500 mg twice a day on an empty

stomach. If it doesn't help with three weeks, it probably wont. Chance of

success with DLPA - 70%. taking a little vitamin C with it will help

absorption since it is an amino acid. It's also great for depression.

Works almost 100% there.

JP

[Guest guest]

Hi Beth....

I'm sorry for everything you and Crystal are having to endure. I know

it must feel insulting to be asked to have a psychiatric consult.

I wouldn't worry to much about the psych consultation. When a doctor

cannot find any reason for the pain, they have to rule out everything

else. At least the consultation will rule out a psychiatric origin for

the pain. I think it's great that the orthopaedist is trying to find

the origin of the pain before going ahead with surgery. It would be a

shame for Crystal to have surgery, only to find that the problem was not

corrected.

I know you really like the orthopaedist, but perhaps a second opinion

would be worthwhile. Will you tell us in what area of the country you

live? I'm sure someone can come up with a good recommendation.

Regards,

[Guest guest]

Hi Beth,

Actually, a psych consul is a very good idea. In my own situation the

chronic pain that I experience has become such that it is hard to know when

I'm feeling " real " pain and when I'm feeling that " down and out " type of

pain. I told my doctor that I feel as if I'm in a vicious circle. The psych

visit may turn out to be a positive one in which Crystal will find new ways

of coping with her scoliosis in addition to the surgery & pain meds.

Good luck to you.

------------

In a message dated 03/10/2001 9:31:32 AM Pacific Standard Time,

dreamworksperf@... writes:

> Crystal is still having pain but it is

> not as acute as it was (thank goodness). But now the orthopedic surgeon

> wants

> her to get a psych consult. That kind of hurts. We are still on hold for a

>

[Guest guest]

Dear , Crystal and I live in Santa Fe, Texas, that is a small

rural town between Houston and Galveston. We have been to the Children's

hospital in Houston to see an orthopedic surgeon and are currently going to

UTMB in Galveston, because, I work there as a nurse, and that is what my

insurance pays for. Ahh, insurance, boy is that a subject, anyway, when I was

extremely distraught over the ER doctors not believing my daughter, I called

Shriners Crippled Children's Hospital to see about a second opinion and spoke

to an orthopedic nurse who worked with scoliosis patients, so she said, and

she told me that she had never seen anyone with scoliosis before surgery have

severe pain only chronic pain and suggested I seek a second opinion, Gave me

the names of some doctors but, my insurance wont pay for them. It's just very

frustrating. Crystal has now missed so much school that I withdrew her and I

am beginning to home school her when she feels up to it. This is difficult,

but will be worth it if she can pass. I think this is helping because she is

not sitting at a desk all day (or calling in pain to come home everyday) But

if you have any other suggestions, I am just about ready for anything, even

if it means standing on my head and resighting strange chants. I would do

just about anything to help Crystal. It hurts me to see her hurt. But, money

is an issue, we don't have very much of it.

Thanks, Beth

[Guest guest]

Hi Beth...

I'm really sorry. It does sound like you're in a Catch 22. In general,

severe pain is not a symptom one sees before scoliosis surgery...

especially in children with moderate curves. However, since Crystal is

describing pain down one leg, I can't imagine that she's making that

up. Can she tell you how the pain radiates down her leg? (That is, is

it the front/side/back of her leg? The whole leg or just part of the

leg?) When I had sciatica, the pain had a very specific pattern that I

was able to show the doctor.

Would it be possible for you to see a surgeon who isn't on your plan?

If you bring Crystal's x-rays and MRIs, hopefully the charge would only

be for the doctor's time. I would like to recommend Mike LaGrone in

Amarillo. He has gotten quite a reputation as being a great surgeon and

a nice person.

I hope you get this all figured out. I can only imagine how frustrating

it must be for you.

Good luck.

Regards,

[Guest guest]

Mikes back hurt pretty severely at times before surgery. He would have a

hard time getting out of bed (especially in cold weather) and would come

into school late (the advantages of a private school). Also, at school, if

he sat or stood with his back unsupported for a period of time, it would

hurt pretty bad. His teachers got used to him standing up and leaning

against the wall when he had to. I know how you feel about being

frustrated...I would have done anything to take away his suffering. Having

the insurance companies act so condescending only adds to the frustration.

Ours was surgery or nothing. I'm surprised at Shriners reaction....we never

got that opinion when we went.

I would go there for an opinion if you are able...maybe they will see

somethng new.

Marcia

Re: pain

> Dear , Crystal and I live in Santa Fe, Texas, that is a small

> rural town between Houston and Galveston. We have been to the Children's

> hospital in Houston to see an orthopedic surgeon and are currently going

to

> UTMB in Galveston, because, I work there as a nurse, and that is what my

> insurance pays for. Ahh, insurance, boy is that a subject, anyway, when I

was

> extremely distraught over the ER doctors not believing my daughter, I

called

> Shriners Crippled Children's Hospital to see about a second opinion and

spoke

> to an orthopedic nurse who worked with scoliosis patients, so she said,

and

> she told me that she had never seen anyone with scoliosis before surgery

have

> severe pain only chronic pain and suggested I seek a second opinion, Gave

me

> the names of some doctors but, my insurance wont pay for them. It's just

very

> frustrating. Crystal has now missed so much school that I withdrew her and

I

> am beginning to home school her when she feels up to it. This is

difficult,

> but will be worth it if she can pass. I think this is helping because she

is

> not sitting at a desk all day (or calling in pain to come home everyday)

But

> if you have any other suggestions, I am just about ready for anything,

even

> if it means standing on my head and resighting strange chants. I would do

> just about anything to help Crystal. It hurts me to see her hurt. But,

money

> is an issue, we don't have very much of it.

> Thanks, Beth

>

>

>

[Guest guest]

In a message dated 1/7/02 9:03:22 PM, wiman@... writes:

<< Request from a cancer patient:

The pain is not in her bones, but in the flesh all around her left side

(where she had a lumpectomy and axially surgery). There is no physical

indication of cancer, or anything else there that would cause pain.

Oncologists, and pain specialist are stumped by the pain. She has tried,

acupuncture, Reiki, hypnotherapy, Nutrition, Celebrex and other things. The

only thing that seems to help in about 80mg daily of Oxycontin. Do you know

of anyone who has had pain of this type and what has helped them.

Thoughts for her? >>

Hi Melinda; I was and still am having pain similar to this in my hips and

thighs. It turned out to be mets to my spine. I have a couple of vertebrea

growing tumors, that are pushing against my spinal cord. I hope this isn't

the case but it might be worth checking out. They found a couple of " hot

spots " on my spine with a full body bone scan, and followed up with an MIR

that shows the tumors. I found that the H2O2 DMSO hot baths help and it

seems to work better controling pain for me if I use an anti-inflamitory, the

pain meds don't seem to help me much.

Hope this help, (and I hope I'm wrong) I would wish this on anyone, not

even Kees.

Klaus

[Guest guest]

Hi

My friend to was in a lot of pain in one side of her back she had to go into

hospital for pain management and they ended up giving her methedone, and a

few other things, the pain is gone now but still the problrm unsolved, there

was no cancer present where her pain was comming from either, I have since

read that it can be deferred pain for example when a person has a heart

attack they may get pain else where in the body opposed to havung it

directly in the heart. Some people on this list put me onto noni juice and

she is yet to start it, still not home, also large doses of vitimin c and

pure water are al supposed to be good pain relivers, Please dont quote me on

this as i am not completly sure if my theory is correct but i hope this

helps

lea

Pain

> Request from a cancer patient:

>

> The pain is not in her bones, but in the flesh all around her left side

(where she had a lumpectomy and axially surgery). There is no physical

indication of cancer, or anything else there that would cause pain.

Oncologists, and pain specialist are stumped by the pain. She has tried,

acupuncture, Reiki, hypnotherapy, Nutrition, Celebrex and other things. The

only thing that seems to help in about 80mg daily of Oxycontin. Do you know

of anyone who has had pain of this type and what has helped them.

>

> Thoughts for her?

>

> Thanks,

> Melinda Wiman

>

>

>

>

[Guest guest]

Noni is a pain killer and perfectly natural. You need to drink

much more than the recommended dose. Did any of you try it? If

so, which brand works best? (Tahitian or Hawaiian?)

\\\

=(o o)=

++++++++++++++++++++++++++++++--V---+++++++++++++++++++++++++++++++

>

>Request from a cancer patient:

>

>The pain is not in her bones, but in the flesh all around her left side (where

she had a lumpectomy and axially surgery). There is no physical indication of

cancer, or anything else there that would cause pain. Oncologists, and pain

specialist are stumped by the pain. She has tried, acupuncture, Reiki,

hypnotherapy, Nutrition, Celebrex and other things. The only thing that seems

to help in about 80mg daily of Oxycontin. Do you know of anyone who has had

pain of this type and what has helped them.

>

>Thoughts for her?

>

>Thanks,

>Melinda Wiman

>

>

>

>

[Guest guest]

Joyce

hoping to start using it soon, will get back to you with any information

lea

Re: Pain

>

> Noni is a pain killer and perfectly natural. You need to drink

> much more than the recommended dose. Did any of you try it? If

> so, which brand works best? (Tahitian or Hawaiian?)

>

> \\\

> =(o o)=

> ++++++++++++++++++++++++++++++--V---+++++++++++++++++++++++++++++++

>

>

>

> >

>

> >Request from a cancer patient:

> >

> >The pain is not in her bones, but in the flesh all around her left side

(where she had a lumpectomy and axially surgery). There is no physical

indication of cancer, or anything else there that would cause pain.

Oncologists, and pain specialist are stumped by the pain. She has tried,

acupuncture, Reiki, hypnotherapy, Nutrition, Celebrex and other things. The

only thing that seems to help in about 80mg daily of Oxycontin. Do you know

of anyone who has had pain of this type and what has helped them.

> >

> >Thoughts for her?

> >

> >Thanks,

> >Melinda Wiman

> >

> >

> >

> >

[Guest guest]

Hey,<br> I am having somewhat the same pain as

you guys. I am a 25 year old female diagnosed with

chondromalacia in both knees this past year. Surgery was done on

both, May 25th for the left one and Nov 21st for the

right one. This past week has been unbearable with

pain. My OS put me on new meds (ORUVAIL) anyone heard

of it? Well it tore my stomach up so I had to come

off it. Now I have to wait to go back on the celebrex

(which I have been on since after the first surgery.

Celebrex seems to help the most, out of vioxx, oruvail. I

have come to the conclusion that I need some type of

anti inflammatory meds in order to function. Does

anyone else feel the same? My 2 surgeries were for

meniscus repairs and when he was in there I had lateral

releases done on both knees, as well as many other things.

The Pain at times is unbearable. Any input will be

greatly appreciated.<br><br>AJ

[Guest guest]

I definitely agree that docs are extremely

frustrating, especially when it comes to understanding the

pain. I have gone to at least 6 docs who didn't

understand the intensity of the pain I'm in. Personally I

think the docs are in the same boat as my friends, if

they don't have the pain, they can't understand what

it's like for us. But I wish that I could find just

one doc who would prescribe something other than

advil and PT. I've been on anti-inflammatories twice

before but they didn't do anything for me so now when I

tell docs this, they won't prescribe anything, even a

different type of medication. How do you get your doc to

really understand what you're feeling? And how to you

convince them that it's really not right to have to live

with constant pain? Especially since I'm 22 but

sometimes I feel like I'm 92 on the days when I can't even

go up the stairs in my house because the pain is so

bad. I go back to see my doc in 2 weeks and I could

use some advice. Thanks for any help!<br><br>Sharon

[Guest guest]

Well, my opinion both as a nurse and as a patient

who deals with chondro. every day is to keep telling

them until they do something! Docs are sometimes

hesitant about prescribing narcotics, but sometimes they

are all that will work! I have had pain that would

not let me sleep until I took a Darvocet (actually

half of one). There is a good pain reliever out there

that is not a narcotic, Ultram or Ultracet. Works very

well. Obviuosly, that or a narcoti is not a long term,

every day " fix. " You need something to take every day

for the pain of nothing else is working. I have tried

advil, tylenol, celebrex, vioxx and Lodine is working

well for me now. Seems my Synvisc injections are

helping, but I still can't stop the lOdine yet. Tried

yesterday not to take it and am still hurting today b/c of

it. Well, that and a little snow/rain mix outside.

Good luck with your doc.

[Guest guest]

> Just wondering, I also have a minor curve in my spine, do

> u think my CP could be related.

Joanne:

Absolutely! As we often discuss in this Group, the whole body must

be examined because it is ALL related. Your curved spine could be

throwing your whole gait out of whack, or even creating a leg-length

discrepancy.

I cannot stress this enough: any slight change in your alignment,

your gait or your muscle balance can have a PROFOUND impact on your

body. Even something as seemingly insignificant as wearing shoes

that are too small could ultimately lead " upstream " to bad knees and

a bad back.

It is important to try to not to limp or (as Lesley wrote?)

to " carry " your injury. I know this is difficult (if not impossible)

for some of you, but you don't want to turn your good leg bad.

Sorry. Rambled a bit there.

HTH,

Doug

[Guest guest]

Doug,

I'll tell my gp tomorrow and get him to send me for physio or

something, I know not to limp anyway cos i used to when i first got

CP and i kept my knee bent all the time and my muscles wasted away so

i had to have months of physio.

I was told that my right leg( the one with CP) was slightly shorter

than my left when I was a bit younger and people say that i'm limping

when i walk altho i dont realise i'm doin it,

Joanne

> > Just wondering, I also have a minor curve in my spine, do

> > u think my CP could be related.

>

> Joanne:

>

> Absolutely! As we often discuss in this Group, the whole body must

> be examined because it is ALL related. Your curved spine could be

> throwing your whole gait out of whack, or even creating a leg-

length

> discrepancy.

>

> I cannot stress this enough: any slight change in your alignment,

> your gait or your muscle balance can have a PROFOUND impact on your

> body. Even something as seemingly insignificant as wearing shoes

> that are too small could ultimately lead " upstream " to bad knees

and

> a bad back.

>

> It is important to try to not to limp or (as Lesley wrote?)

> to " carry " your injury. I know this is difficult (if not

impossible)

> for some of you, but you don't want to turn your good leg bad.

>

> Sorry. Rambled a bit there.

>

> HTH,

> Doug

[Guest guest]

Yes! When your back is curved excessively it's called Lumbar Lordosis.

An exaggerated curved lower back is a clear sign of an anterior titled pelvis

that will affect how your legs move correctly. Make no doubt about it. I'm

trying to remember everything but you have to think that your hamstrings are

and many muscles are set up with an action potential tied into their length

before contraction. Now if your muscle is lengthened before contraction the

over all action of the muscle is going to be less and since your hip is tilting

forward that means your hams are being stretched, hence less contraction.

That means your hams aren't providing the support they were designed

during flexing and extending.

> I'm feelin really fed up today cos my knee has flared up again, taken

> ibuprofen and paracetamol and goin to the doctors tomorrow so

> hopefully i'll get some stronger painkillers and maybe some

> exercises. Just wondering, I also have a minor curve in my spine, do

> u think my CP could be related.