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Carol,

I also had pain in my rear for at least a year.

Part of it was weak muscles which I have exercises for. Part of it

was the new way in which my body was carrying my back. I

complained endlessly that my rearhurt. It finally went away

as I strengthened. I also lift my knee up to trim, shave and put

shoes on. I have no issues with it now. Post op 17 months.

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I too have a problem with pain meds causing severe nausea etc.

without taking a medication called Phenergan.It is an anti-emetic

and I take it (25mg tablets) a couple of times a day and have no

trouble whatsoever,but specify TABLETS if you ask your physician as

some of them tend to order it in suppository form!!

> I know I can't take Vicodin or Fentanyl--already tried those---and

> they make me " sick as a dog " and dizzy--room spinning dizzy--can't

> eat or drink anything and can't get out of bed when I'm on those.

I'm

> trying to find out what I need to send to UCSF so I can get in

there.

> I will ask the new Ortho I'm seeing Tues. if there's such a thing

as

> a Pain Clinic in our area. The problem is, I need to work and I

can't

> take anything that will make me real sleepy or dizzy or sick. It

> sounds like most of the pain meds do all of those things. At least

> the ones for severe pain. I guess I'll have to start using my TENS

> unit again. It doesn't stop the pain, but just " masks " it with

> electric shock-like pulses applied to the skin.

>

>

> >

> > For Carol V (Calif.)

> >

> > Carol, no, you do not need to " tough it out " ! At least only

for a

> little

> > while as you find the right Pain Clinic. Are you associated

with

> a teaching

> > hospital? A hospital at all? Usually, that is where you will

> find a real pain

> > clinic staffed by anesthesiologists and nurses who CARE! That

> would be my

> > first thing, especially if I had no doctor, or a doctor who was

> afraid to

> > prescribe real pain meds. At least, that was the answer for

me.

> It took some

> > time, some treatments I may not have been thrilled with, etc.,

but

> the whole

> > time I had people I could talk with who tried very hard to make

> life easier.

> > There are medications, treatments, people, etc., at Pain

> Clinics...even other

> > people with pain are sometimes worth chatting with.

> >

> > I've never been to CA, and I am on the other coast, so I cannot

> tell you of

> > a clinic in your area. Ask your doctor, look in the yellow

pages

> but, know

> > for sure that there is relief out there somewhere.

> >

> > Sincerely,

> >

> > Carole M.

> >

>

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after I had shoulder surgery, the doctor gave me mepregan (I think

that is what it is) and it had a pain medicine and an anti-nausea

medicine combined. He said it is stronger than lortab.

> > >

> > > For Carol V (Calif.)

> > >

> > > Carol, no, you do not need to " tough it out " ! At least only

> for a

> > little

> > > while as you find the right Pain Clinic. Are you associated

> with

> > a teaching

> > > hospital? A hospital at all? Usually, that is where you will

> > find a real pain

> > > clinic staffed by anesthesiologists and nurses who CARE! That

> > would be my

> > > first thing, especially if I had no doctor, or a doctor who

was

> > afraid to

> > > prescribe real pain meds. At least, that was the answer for

> me.

> > It took some

> > > time, some treatments I may not have been thrilled with, etc.,

> but

> > the whole

> > > time I had people I could talk with who tried very hard to

make

> > life easier.

> > > There are medications, treatments, people, etc., at Pain

> > Clinics...even other

> > > people with pain are sometimes worth chatting with.

> > >

> > > I've never been to CA, and I am on the other coast, so I

cannot

> > tell you of

> > > a clinic in your area. Ask your doctor, look in the yellow

> pages

> > but, know

> > > for sure that there is relief out there somewhere.

> > >

> > > Sincerely,

> > >

> > > Carole M.

> > >

> >

>

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  • 4 weeks later...

Hi ,

What a coincidence, I have an appointment tomorrow for the same thing. It is

not a new pain for me, but it has worsened. I love to walk. This summer it

hurt only when I took a long fast walk, now it hurt all the time. When I sit I

get a groin pain, when I stand and walk, my hip sort of burns. Deep inside

burn....I hope to get some sort of answer tomorrow.

It's good to hear from you.

Joan Claffey

Has anyone ever had pain that started in the groin area and went around the hip?

It is so bad I have trouble walking, sitting and sleeping. I am taking pain meds

all the time and getting little relief. At first I thought I had pulled a muscle

but it is getting worse and have had it for over a week now. Any ideas would be

appreciated.Thanks the WV hillbillyLOVE IS IN ALL THINGS AND IN ALL THINGS

IS LOVE__________________________________________________________Need a

vacation? Get great dealsto amazing places on

Travel.http://travel./[Non-text portions of this message have been

removed]

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Hi ,

Pain that begins in the groin area like that could be a sign of

osteonecrosis (aka avascular necrosis) of the hip. You should be

checked by an orthopedist. Osteonecrosis can be caused by prednisone

and is quite serious. I've got it in my knees - the pain is quite

severe.

It doesn't always show up on X-rays in the early stages, and if not, an

MRI is usually ordered.

Take care,

Sandy C.

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JOan,

I hope they will be able give you a definitive answer. Who will you

see??? Please let us know the results. These weird pains fascinate me!

Clara from OR

>

> Hi ,

>

> What a coincidence, I have an appointment tomorrow for the same

thing. It is not a new pain for me, but it has worsened. I love to

walk. This summer it hurt only when I took a long fast walk, now it

hurt all the time. When I sit I get a groin pain, when I stand and

walk, my hip sort of burns. Deep inside burn....I hope to get some

sort of answer tomorrow.

>

> It's good to hear from you.

> Joan Claffey

>

>

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  • 2 months later...

Hello,

I have major pain at the top of my leg that hurts with each step when I walk. I'm heading to the dr next week but was curious if you can guess whether this is coming from my hip or my knee?

Thanks,

MarkeySee AOL's top rated recipes and easy ways to stay in shape for winter.

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  • 2 weeks later...

-After reading about your shooting pain I wonder if your back and

nerves could be involved? I have some major back issues and my knee

problems and limping made them much worse. Pain down the leg is one

of the most common symptoms. Have you been to a pain management or

back specialist? Having back issues will change somewhat how your PT

will be handled in the Hospital and afterwards. Could you be

aggravating your lumbar back area with the " off balanced " walking??

Ask your doctor about this pain.

-- In Joint Replacement , " N. "

<maria_na@...> wrote:

>

> Hello again:

>

> A little over a week away from TKR surgery (14th). I am having a

> question about pain in general. Has everyone experience pain

outside of

> the knee itself. Mine involves the entire leg from groin to the

ankle.

> Is this normal? I am still walking (limping) without a cane or

walker,

> however I have to rest after pretty much every 40 to 50 feet and

sit for

> a little while and then I am able to go on for another such

distance.

> Taking Vicadon which helps some but found that Tylenol Extra

Strength

> does pretty much the same trick.

> Nights I wake up with god awful pain all the way down my leg, but

once I

> get up and sit for a while in a chair I am ok again for maybe

another

> couple of hours. Would like to know if you have experienced the

same.

> It's a sort of shooting kind of pain not necessarily concentrated

to the

> knee.

>

> Thanks in advance.

>

> Oh, another question pertaining to Anesthesia. I had general ones

during

> my 2 hip replacements and want the same for the knee. Has had

anyone

> other than that and how did it go?

>

>

>

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Thanks. I never ever had a back pain in my life. I already talked to

my Doc about this during pre-op appointment and he sort of just

shrugged it off. After last night when I slept again only 3 hours with

interruptions I went to the ER today and asked for a prescription of

Prednison of 5 mg a day to make it through the next week. It

immediately worked and I had a nice long nap this afternoon. Now, 8:30

pm I am still without pain and walking practically without pain is

possible. What an amazing drug. I have been one it before for several

years and I am aware of it's long term side effects. But as for now I

am looking at it as a temporary solution. This brings me to the

question if anybody has been using Prednison during after-surgery PT

and if...was it of great help?

Thanks for you input.

apesapane wrote:

-After reading about your shooting pain I wonder if your back and

nerves could be involved? I have some major back issues and my knee

problems and limping made them much worse. Pain down the leg is one

of the most common symptoms. Have you been to a pain management or

back specialist? Having back issues will change somewhat how your PT

will be handled in the Hospital and afterwards. Could you be

aggravating your lumbar back area with the "off balanced" walking??

Ask your doctor about this pain.

-- In Joint Replacement ,

" N."

<maria_na@...> wrote:

>

> Hello again:

>

> A little over a week away from TKR surgery (14th). I am having a

> question about pain in general. Has everyone experience pain

outside of

> the knee itself. Mine involves the entire leg from groin to the

ankle.

> Is this normal? I am still walking (limping) without a cane or

walker,

> however I have to rest after pretty much every 40 to 50 feet and

sit for

> a little while and then I am able to go on for another such

distance.

> Taking Vicadon which helps some but found that Tylenol Extra

Strength

> does pretty much the same trick.

> Nights I wake up with god awful pain all the way down my leg, but

once I

> get up and sit for a while in a chair I am ok again for maybe

another

> couple of hours. Would like to know if you have experienced the

same.

> It's a sort of shooting kind of pain not necessarily concentrated

to the

> knee.

>

> Thanks in advance.

>

> Oh, another question pertaining to Anesthesia. I had general ones

during

> my 2 hip replacements and want the same for the knee. Has had

anyone

> other than that and how did it go?

>

>

>

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Hi

I see you'vd had both hips replaced and ready for a knee replacement. I had both hips replaced in 2001 and a LTKR on 711/07. The knee is different from the hip. Let me know if you have any specific questions.

SallyStart the year off right. Easy ways to stay in shape in the new year.

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Hello Sally:

Thanks so much for offering to answer questions. Yes, I have a

few...one of them again about the unusual pain up and down my leg. I

have been dealing with a lot of pains since I have been diagnosed with

RA in 1994. My first hip replacement was in 1998, the second 2005, so

just 2 years ago. Not until this last summer that my left knee started

to act up. I have been a very active person, riding my bike, walking a

great deal and just enjoying life in general. This new pain with the

knee however is totally different. My Dr. prescribed Prednison to just

tie me over the Holidays which wore off about the 2nd and 3rd of

January. This past weekend was absolutely horrible. I was only able to

sleep will sitting in a right angle position. Any recline would trigger

this pain and bring me actually to tears. By Sunday morning I decided

to get myself to the ER and ask for more Prednison which I am using

now, 5 mg a day till Friday. So I wonder about pain...was it confined

to your knee or was there pain that radiated from it also. Also would

like to know if you had general Anesthesia or a spinal which what my

doctor wants me to have. Surgery date is creeping up on my. I am very

uneasy this time around. My general health is a bit off also with high

BP, raised liver enzymes and high cholesterol. I am 61 years old.

Pimentel7@... wrote:

Hi

I see you'vd had both hips replaced and ready for a knee

replacement. I had both hips replaced in 2001 and a LTKR on 711/07.

The knee is different from the hip. Let me know if you have any

specific questions.

Sally

Start the year off right. Easy ways to stay in shape in the new year.

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Hi

I am unfamiliar with the leg pain you speak of. My knees were never right and problems began when I was about 12 (I think the basic problem was kneecaps were not centered on my knees) and I will be 61 next week.I knew for many years that I would eventually need knee replacements, however, was surprised to find out about 10 years ago that my hips had been destroyed by osteoarthritis. So in 2001 I had both hips replaced (6 months apart) under a general anathestic. I did not have the first knee replacement until July 2007 (also under a general) and was always able to sleep at night before the surgery Prior to the knee surgery I just could not go down stairs anymore, my back was really bothering me, the knee hurt, etc., and it was just time. Now, 6 months later I can say I am really happy with my new knee. Be careful with the prednisone as it can have some really bad effects.

let me know if you have any more questions and best of luck to you.

SallyStart the year off right. Easy ways to stay in shape in the new year.

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  • 5 months later...
Guest guest

Hi Caren,

Your experience sounds a lot like my first Harrington rod procedure when I was

11 years

old in 1962. If anyone even touched my bed, I could feel it as such severe pain

in my

back. They would give me morphine shots every 4 hours, and I would try to

occupy my

mind after the 3 hours when the pain was roaring back. I was in ICU and the

ceiling was

the type that had holes in it. I spent time counting the holes to try to

concentrate on

something other than the pain. This went on for 6 days. I couldn't eat

anything...they

would fix me malts or anything that sounded good to me, but I could never eat

anything.

On the evening of the 7th day, I felt hungry, suddenly! My dad was visiting me

and I

asked him if he could get me some green olives!!! He went down to the

cafeteria. They

were closed but the man who was cleaning gave my dad a bunch of those big green

olives! I ate some of them, and I totally turned the corner at that time. My

pain was

gone...no more pain meds were needed that I can remember. I was in the hospital

for 1

month and confined to bed for 3 months, but I was never in pain again after that

surgery.

I hope and pray that your surgery goes really well in September. I had my

revision on April

8th of this year, and I felt so much better after a couple of weeks. I am

feeling so good

now that I almost can't believe it!

Best to you,

>

> I've been reading everyone's posts about post op pain. The strange thing is

> that when I had my original scoliosis surgery, at age 14, I remember having

> excruciating pain for 10 days. I remember that if I moved my pinky, my back

> would hurt. On the 11th day, the pain was gone. And, I don't remember

> taking pain meds at home. In the hospital, they gave me morphine shots for

> the pain (which didn't help and didn't put me to sleep as it did all the

> other kids). Is this unique to me or do any of you share the same

> experience?

>

> I have scheduled my revision surgery for Sept with Dr. Errico and Dr.

> Schwab,(eye candy, I believe Cam described him). I hope that on the 11th

> day, all the pain will be gone!!!!!!

>

> Caren

>

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Guest guest

Caren,

I would like to put you on the calendar...do you have your exact

dates yet? I am sure you will find this date coming at you faster and

faster as you go through the summer. It is also nice to have plenty

of time to get things in order so your return from the hospital is

easier.

Now I feel embarrased that I mentioned DrSchwabs good looks...I am

sure he is an excelllent surgeon and my statement could be percieved

as trivializing his credentials. I hope you have an excellent

outcome. Do you expect these two will operate as a team on you, or do

you mention them both because they work as a team and they haven't

decided who will do your surgery?

I haven't a clue as to what you past experience with morphine might

mean, but I would be sure to discuss it with your surgeon(s) and/or

your anesthesiologist if/when you do a pre-op consult (lots of

patients do). As some of these articles explain, there are some

advances being made in determining how folks will react to pain and

perhaps there is a way that could possibly help them fine tune your

post-op regimine.

I guess my pain must have been controlled with morphine, I remember

the shots and feeling pretty " out of it " from them. When I discussed

pain control with DrRand he expalined that he would use Duramorph

which actually is placed in the spine, (so it must be some kind of

medication that dissolves?) and he promised that I wouldn't feel too

much pain for 24 hours..which was true...although I still felt pretty

awful in general. He did say that some people are allergic to this

product, and I think I recall that it either can (or does?) depress

breathing...thus I could expect to be in ICU for the first 24 hours,

and sure enough I was...although I never had any problems.

Take Care, Cam

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Guest guest

Dear Caren,

Please know at least for me, pain control following revision was MUCH better than after my Harrington Rod surgery. I had my Harrington Rod surgery at UCSF in 1973 at age 14. Pain control back then consisted of shots they injected into my thighs. I would watch the clock waiting that last half hour till the shot was supposed to come was agony, and lots of times the shot was late. I also couldn't stand if my body got moved out of a straight line, pain really worsened then, and I knew which nurses really quickly were capable of moving me and getting the positioning right. I was on the ped's ward, and since my foster parents couldn't be there most of the time, I learned to get parents of the kids in the surrounding beds( 4) to advocate for me sometimes. I was there for nearly a month, and I too don't remember going home on any pain med's, and I find that amazing.

Years later I went back to UCSF to visit my Grandfather following heart surgery. I was walking up to the door with my parents( they had adopted me by then, and I was a young adult), and the moment my hand reached for the door, something swept over me, like all that pain I had as a kid, and the smell of the place, and I got immediately sick to my stomach, started crying and I couldn't go in. So profound were the memories of that place, in my childs mind, I was right back there. I never saw my Grandfather that day, couldn't go in.

Revision is and was painful, but nothing like my Harrington Rod surgery. I also had pain meds directly in my spine, and my doc prefers to keep his patients out for the first couple of days in ICU. After the pain pump was removed, I had one, but don't remember it, then I either went to orals and after my last I had the Fentanyl patch. I hope your pain all goes quickly, but after such a big surgery most of us are on some type of pain meds for at least a couple of months, for me three months. We just don't pop back in the same way as we did when we were kids. I think even more than the pain following revision, I just felt bone tired, and kinda like I had been hit by a bus.

For some after hearing about others recoveries here, find theirs went easier, and others will say it was much harder. You wont know till you are in the middle of it. I had more than a few tell me that they just didn't get it till they felt it, even though they had read all the stories. Also know while our diagnosis is the same, and similar surgeries, just how you recover is uniquely yours. It's good to have the reference here, to be prepared for just what it will feel like. It's kinda like when you are about to give birth to your first child, you've read everything, and in your mind you know what it's going to be like. But then in the middle of it, at least for me, I kept saying" this isn't like what I read in the book". Prepared yes, it's always good, but FEELING it can surprise you.

Most of us who go through this surgery are glad they did it. While it was a long haul for me, that is true. Recovery and healing is a job, but believe me, with time, and mine was going on six years ago, there will come a time when your back isn't the thing you think about most, you are out living your life. I wish that for you.

Colorado Springs

[ ] Pain

I've been reading everyone's posts about post op pain. The strange thing isthat when I had my original scoliosis surgery, at age 14, I remember havingexcruciating pain for 10 days. I remember that if I moved my pinky, my backwould hurt. On the 11th day, the pain was gone. And, I don't remembertaking pain meds at home. In the hospital, they gave me morphine shots forthe pain (which didn't help and didn't put me to sleep as it did all theother kids). Is this unique to me or do any of you share the sameexperience?I have scheduled my revision surgery for Sept with Dr. Errico and Dr.Schwab,(eye candy, I believe Cam described him). I hope that on the 11thday, all the pain will be gone!!!!!!Caren

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Guest guest

Cam,

So far I'm scheduled for Sept 2 at Hospital for Joint Disease in

NYC. Dr. Errico and Dr. Schwab will work as a team; the idea is to

minimize time spent under anesthesia and blood loss. Dr. Errico

will have a plastic surgeon do the closure; he feels that having the

plastic surgeon do the closure will reduce the risk of wound

infection. Apparently, he uses the plastic surgeon when there is a

previous long scar involved in the surgery. Not sure exactly how it

will reduce risk of wound infection but I think it has something to

do with how they deal with old scar tissue.

I chose to have the surgery at Hospital for Joint Disease rather

than NYU medical center because Joint Disease has a floor dedicated

to rehabilitation and I thought it would be easier that way.

Anyways, I am a nervous wreck about this whole thing but I really

want to get it over with. I went to Atlantic City this weekend and

could not enjoy myself because I was unable to stand on the long

lines for the restaurants and registration. I showed the concierge

my handicap sticker so he registered me without having to wait in

line but still gave me a hard time about it. But the trip

reinforced for me the fact that the surgery is necessary if I am to

lead a normal life again. I plan to retire within 2 years and want

to be free to do anything I wish and not have to worry about

logistics; right now, I'm always concerned about " how can I get

there? " , " is there parking " , " are there places to sit? " . I'm sure

you know the deal. I'm really tired of it all.

Caren

>

> Caren,

>

> I would like to put you on the calendar...do you have your exact

> dates yet? I am sure you will find this date coming at you faster

and

> faster as you go through the summer. It is also nice to have

plenty

> of time to get things in order so your return from the hospital is

> easier.

>

> Now I feel embarrased that I mentioned DrSchwabs good looks...I am

> sure he is an excelllent surgeon and my statement could be

percieved

> as trivializing his credentials. I hope you have an excellent

> outcome. Do you expect these two will operate as a team on you, or

do

> you mention them both because they work as a team and they haven't

> decided who will do your surgery?

>

> I haven't a clue as to what you past experience with morphine

might

> mean, but I would be sure to discuss it with your surgeon(s)

and/or

> your anesthesiologist if/when you do a pre-op consult (lots of

> patients do). As some of these articles explain, there are some

> advances being made in determining how folks will react to pain

and

> perhaps there is a way that could possibly help them fine tune

your

> post-op regimine.

>

> I guess my pain must have been controlled with morphine, I

remember

> the shots and feeling pretty " out of it " from them. When I

discussed

> pain control with DrRand he expalined that he would use Duramorph

> which actually is placed in the spine, (so it must be some kind of

> medication that dissolves?) and he promised that I wouldn't feel

too

> much pain for 24 hours..which was true...although I still felt

pretty

> awful in general. He did say that some people are allergic to this

> product, and I think I recall that it either can (or does?)

depress

> breathing...thus I could expect to be in ICU for the first 24

hours,

> and sure enough I was...although I never had any problems.

>

> Take Care, Cam

>

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Guest guest

Hi Caren,

I had my first scoliosis surgery , with Hartington Rod, when I was 36 years old. I remember my severe pain in the hospital which came mostly from the donor site, the iliac crest area where bone was taken for the fusion. I remember getting injections every four hours. I left the hospital two weeks after surgery, in a full body plaster body cast. At that point, I didn't even have enough pain to warrant a Tylenol. I was exhausted and sort of stiff, but not in any real pain, and needed about 4 weeks to feel back to normal, as normal as one can feel in a 25 lb. body cast.

On the other hand, when I had my revision surgery, 10 1/2 years ago, I felt like I was run over by a truck, was in severe pain and on MS Contin, a morphine derivative, for 6 months. That's longer than most, but a lot of people are on narcotics for pain for a couple of months.

I hope you have as good a pain experience with your revision surgery as you did with your Harrington Rod surgery, but don't be surprised if it takes longer to get rid of the pain this time. It wouldn't mean there is anything wrong. For one thing, you are older. Also, I think revision surgery is more complicated for the body than the original surgery. But, as said, pain control is much better these days.

Good luck.

Bonnie

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Guest guest

Tracey,

My pain changed over the course of fourteen years. First it was in my neck and

shoulder, then stabbing pains began throughout my body (especially the limbs),

then all my joints locked up and my entire back was immovable.

I know a number of Lyme sufferers are either taking narcotics or opiates for

their pain, and they say they have been greatly helped. I, myself have begun

drinking a juice called mangosteen. A company based in Utah (Xango) sells what

is supposed to be top quality mangosteen juice. Since I've begun drinking it

(2oz 3x pd), I've had tremendous results. After my 4th day on the juice, the

shooting pains in my arms stopped. Gradually, all the pain melted away and my

fatigue was allieviated as well.

I hope this helps. If you'd like more info on what I or my friends have used for

pain, please e-mail me at anne_faibrook@.... I'd be happy to share our

experiences with you.

Take Care,

anne

From: bty51212570 & lt;essextreehugger@... & gt;

Subject: [ ] Pain

Date: Monday, June 2, 2008, 5:25 AM

My partner Steve originally had a pain which he described as burning

when he was incredibly ill with Lyme 4 years ago.

He now had a pain which feels like people are hanging nails into his

elbows and knees and the doctors over here in England are saying its

M.E which we never much doubt. From our reading it looks like it could

be late lyme arthritis..

Are there any late lyme sufferers out there? if so do you feel your

the nature of your pain has changed from earlier on in your illness?

Tracey x

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  • 7 months later...

I am in the same quandary as you are. I don't know how to explain to tell people

how I feel, there is no rhyme or reason, I mean As far as why I am not getting

better. I mean I am WAY better than when I got hurt originally. I don't know how

to tell the Dr. that what I am on is not really touching the pain. I am trying

something else, he lowered my lyrica dose, to 75mg 2x's/day ( i was on

300mgs/day), Ultram 300mgs/day, Ambien 10mgs @ bed and added Zanax 1mg 3x's/day.

I don't know if that is a lot or not, what I was on before the Zanax wasn't

doing much for the actual pain. the Doc said to give it time. But before any of

this I was only taking Amnitrypatiline 50mgs/day @ night and some Ibuprophen,

somehwere around 1000mgs a day, what I was taking. I finally told this Doc that

I could not take the pain anymore, it is making me crazy, I can't get away from

it. I tried to tell him it felt like labor pains in my lower back constantly. I

don't know if a pain

level of 7 is a lot, it is what I deal with everyday, yes I can get out of bed,

it takes me 10 minutes, yes I can do some things around the house, it takes me a

hell of a lot longer than it used to. I also think and have tried to explain to

people that I think as I get more used to it or something, like more tolerable

of it. Until something dumb happens like I forget to pick my foot up more (foot

Drop), and trip over nothing.

I remember before I dealt with this I used to think when people would say

something about their back hurting, or something about sciatic pain that it was

no big deal. I now know that I was sorely mistaken and I wish I had never

thought that. And anyone who says they have a " touch of the sciatica " , well I

have no idea how someone could say it is a touch. I have never been in more pain

in my life. And it isn't something I can explain to anyone. I mean " it hurts "

doesn't begin to cover it.

And I have gotten to a point where I am so sick of telling my story to people,

Doctors and what not I am just sick of it. All I want is my life back, I want to

be able to play with my kids, make love to my husband with out being in pain, go

hiking and go camping.

I think I finally have good doctors, they seem to care, and they are not working

for my place of employment. I feel as though their goal is to get me back to

work, to my life and not to the extent that they are sending me from Dr. to Dr

trying to get someone to tell them I am faking. I feel as though there is

finally a light at the end of the tunnel.

I have a surgical consult next week, hopefully to get some answers!

Keep hoping!

Sara

From: cathy mccarthy <bbhorsetack@...>

Subject: pain

spinal problems

Date: Friday, February 6, 2009, 8:22 PM

Hi all, long post.... sorry...

I just went through a " severe pain event " this week, as I call them. (shoveled

a whole lot of snow.... dum thing to do,... stupid...) Other names for them... I

will not post here. :(. You all know what I am talking about. SEVERE PAIN...

" OUCHHHH " . Yes it really really hurt and I hope to say it is over... for this

time anyway... I think... HOW do I tell my fam-dam-ly what it felt like???? (

they do not understand) and why I get soooo quiet and withdraw into myself when

it is happening??? ? THE PAIN? and how TIRED it can make you feel, much like you

had the flu virus or something? I look just fine.... as fine as someone who has

had chronic pain for a long time and a nights sleep is a rare thing if not a

" blessing " . Right now as I am writing this my left leg is having spasms and

hurting like hell... and feels as cold as hell... my back hurts...nothing new

there, and today is a " good " day!!!! aaakkkk.

GEEE! My Doc thinks it is in my head....I AM IMAGINATING IT...(I need a new Doc)

and BTW, I have been dealing with this since 1990... (had a Transverse Myelitis

episode then). So ya... this is not new to me but still have not figured out how

to explain to my PEOPLE close to me, how it feels. You would think after all

this time (GOOD GOLLY 19 years!!!) I should of been able to. But no. So do not

feel bad if you can not either !!!

One new question for the group is. how do you explain PAIN. Our level of pain.

It is not NORMAL. I take pain meds. I THINK they are low dose. 30 mg morphine

suphate 2tms a day, 2 percoset at night, tylenol during the day, meloxicam...

that sort of stuff. Other stuff too. hmmmmmmmmm. Is it low dose... do you not

think???? I need a new doc... I like this guys staff... the nurses and NP he

has. But gosh. Your " Doc " really does have your 'life' in his hands. do you not

think???

Another question, I do take alprazolam, .5 mg at night. I think it does help me

to sleep. However, I do have 2 weeks worth of cymbalta to try (14 caps). Should

I try it? AM I DEPRESSED??? Probably. Does either help with the pain?

Thank anybody who read this long post. Sorry. Had to yak at somebody who might

at least DOES understand. Thank you all for being HERE FOR ME. I do read all the

posts on here.

in NH

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i take 120 mg of morphine a day, any less and i can't get out of bed and i am

always in pain. i have had five failed spine surgies. i also have carpel tunnel

in both risks, i need to get a steroid shot. the biggest concern is those type

of shots raise the blood sugar and i am a diebetic. but its one shot, i do not

think it will be as difficult as when i was in the hospital with copd and i had

to have it to breathe, and my sugars went to the 300s. on the better good side

of the news is i get to have a bRAND NEW motor wheel chair so i am thrilled, the

old one was well old. lol i just really wanted to say my heart goes out to your

pain. its this reason i made a creame that works well for severe pain, i do not

take my oxy breakthrough because of it. i am blessed, or least i feel that i am

inspite of the pain i go through each day. choosing to focus on the good is a

choice i try to make each day.

blessings,

cathy k

pain

Hi all, long post.... sorry...

I just went through a " severe pain event " this week, as I call them. (shoveled

a whole lot of snow.... dum thing to do,... stupid...) Other names for them... I

will not post here. :(. You all know what I am talking about. SEVERE PAIN...

" OUCHHHH " . Yes it really really hurt and I hope to say it is over... for this

time anyway... I think... HOW do I tell my fam-dam-ly what it felt like???? (

they do not understand) and why I get soooo quiet and withdraw into myself when

it is happening???? THE PAIN? and how TIRED it can make you feel, much like you

had the flu virus or something? I look just fine.... as fine as someone who has

had chronic pain for a long time and a nights sleep is a rare thing if not a

" blessing " . Right now as I am writing this my left leg is having spasms and

hurting like hell... and feels as cold as hell... my back hurts...nothing new

there, and today is a " good " day!!!! aaakkkk.

GEEE! My Doc thinks it is in my head....I AM IMAGINATING IT...(I need a new

Doc) and BTW, I have been dealing with this since 1990... (had a Transverse

Myelitis episode then). So ya... this is not new to me but still have not

figured out how to explain to my PEOPLE close to me, how it feels. You would

think after all this time (GOOD GOLLY 19 years!!!) I should of been able to. But

no. So do not feel bad if you can not either !!!

One new question for the group is. how do you explain PAIN. Our level of pain.

It is not NORMAL. I take pain meds. I THINK they are low dose. 30 mg morphine

suphate 2tms a day, 2 percoset at night, tylenol during the day,

meloxicam...that sort of stuff. Other stuff too. hmmmmmmmmm. Is it low dose...

do you not think???? I need a new doc... I like this guys staff... the nurses

and NP he has. But gosh. Your " Doc " really does have your 'life' in his hands.

do you not think???

Another question, I do take alprazolam, .5 mg at night. I think it does help

me to sleep. However, I do have 2 weeks worth of cymbalta to try (14 caps).

Should I try it? AM I DEPRESSED??? Probably. Does either help with the pain?

Thank anybody who read this long post. Sorry. Had to yak at somebody who might

at least DOES understand. Thank you all for being HERE FOR ME. I do read all the

posts on here.

in NH

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Hi ,

I just wanted to reply, that I do read all the post I can also, and found your

post very heart wrenching. I can so understand your feelings about your people

not understanding your pain. My family know I suffer from chronic pain and

severe spinal problem that cause the pain, but still call on me to do things I

know I shouldn't be doing. I keep getting the looks and remarks about the amount

of meds I take, and my doc is really tight waded on the Rx's. Kinda makes you

want to just shake some sense into the sometimes. I also have a problem with

INSAIDs, even with the help meds to coat my stomach I have problems the perks I

take have 325mg of acetaminophen, which really give me a fit, but trying to

explain it to my PM is relentless, he keeps saying there's no way. Thinks I am

just playing him I guess.

I hate to see night time come, b/c its another battle trying to get enough rest

to make it through the next day, when I have the really bad nights, they all

give me a hard time about falling asleep during the day, my people even get mad

at me, the same ones that get their rest at night. It's like you can't win for

loosing.

The cymbalta did help me with pain for a little while, but I can't take it due

to a reaction to one of my other meds I take. Good luck on that, I would say do

what it take to get by. I am no doctor, but I do understand the problem of not

getting enough rest. I hope everything works out for you and you can get someone

to understand you suffering.

 

Bama,

 

The dog has seldom been successful in pulling man up to its level of sagacity,

but man has frequently dragged the dog down to his. Thurber

                                                                            

________________________________

From: cathy mccarthy <bbhorsetack@...>

spinal problems

Sent: Friday, February 6, 2009 8:22:34 PM

Subject: pain

Hi all, long post.... sorry...

I just went through a " severe pain event " this week, as I call them. (shoveled a

whole lot of snow.... dum thing to do,... stupid...) Other names for them... I

will not post here. :(. You all know what I am talking about. SEVERE PAIN...

" OUCHHHH " . Yes it really really hurt and I hope to say it is over... for this

time anyway... I think... HOW do I tell my fam-dam-ly what it felt like???? (

they do not understand) and why I get soooo quiet and withdraw into myself when

it is happening??? ? THE PAIN? and how TIRED it can make you feel, much like you

had the flu virus or something? I look just fine.... as fine as someone who has

had chronic pain for a long time and a nights sleep is a rare thing if not a

" blessing " . Right now as I am writing this my left leg is having spasms and

hurting like hell... and feels as cold as hell... my back hurts...nothing new

there, and today is a " good " day!!!! aaakkkk.

GEEE! My Doc thinks it is in my head.....I AM IMAGINATING IT...(I need a new

Doc) and BTW, I have been dealing with this since 1990... (had a Transverse

Myelitis episode then). So ya... this is not new to me but still have not

figured out how to explain to my PEOPLE close to me, how it feels. You would

think after all this time (GOOD GOLLY 19 years!!!) I should of been able to. But

no. So do not feel bad if you can not either !!!

One new question for the group is. how do you explain PAIN. Our level of pain.

It is not NORMAL. I take pain meds. I THINK they are low dose. 30 mg morphine

suphate 2tms a day, 2 percoset at night, tylenol during the day, meloxicam...

that sort of stuff. Other stuff too. hmmmmmmmmm. Is it low dose... do you not

think???? I need a new doc... I like this guys staff... the nurses and NP he

has. But gosh. Your " Doc " really does have your 'life' in his hands. do you not

think???

Another question, I do take alprazolam, .5 mg at night. I think it does help me

to sleep.. However, I do have 2 weeks worth of cymbalta to try (14 caps). Should

I try it? AM I DEPRESSED??? Probably. Does either help with the pain?

Thank anybody who read this long post. Sorry. Had to yak at somebody who might

at least DOES understand. Thank you all for being HERE FOR ME. I do read all the

posts on here.

in NH

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Share on other sites

The biggest problem I have is that pain scale, I know this subject has come up

before, but I hate that question. I always want to say, what part of my

spine/pain are we talking about, with multiple problems, I can't find

a reasonable answer, if my lower back is not hurting so bad, but my neck is

really flaring up then what do you say?, and when you go really high on the

scale they think you are stretching the truth, if you are hurting that bad you

should look as though. the amount of pain I suffer from daily has toughened me

up, so pain I am feeling would put someone else in tears, if I am not in tears

then I must be lying? Does this make any sense to anyone? My PM staff, rarely

ask me that question anymore.

Thank you for reading this, Getting off the soapbox now. lol

 

Bama,

 

The dog has seldom been successful in pulling man up to its level of sagacity,

but man has frequently dragged the dog down to his. Thurber

                                                                            

________________________________

From: Sara Saupe <sbs_1975@...>

spinal problems

Sent: Friday, February 6, 2009 9:29:15 PM

Subject: Re: pain

I am in the same quandary as you are. I don't know how to explain to tell people

how I feel, there is no rhyme or reason, I mean As far as why I am not getting

better. I mean I am WAY better than when I got hurt originally. I don't know how

to tell the Dr. that what I am on is not really touching the pain. I am trying

something else, he lowered my lyrica dose, to 75mg 2x's/day ( i was on

300mgs/day), Ultram 300mgs/day, Ambien 10mgs @ bed and added Zanax 1mg 3x's/day.

I don't know if that is a lot or not, what I was on before the Zanax wasn't

doing much for the actual pain. the Doc said to give it time. But before any of

this I was only taking Amnitrypatiline 50mgs/day @ night and some Ibuprophen,

somehwere around 1000mgs a day, what I was taking. I finally told this Doc that

I could not take the pain anymore, it is making me crazy, I can't get away from

it. I tried to tell him it felt like labor pains in my lower back constantly. I

don't know if a pain

level of 7 is a lot, it is what I deal with everyday, yes I can get out of bed,

it takes me 10 minutes, yes I can do some things around the house, it takes me a

hell of a lot longer than it used to. I also think and have tried to explain to

people that I think as I get more used to it or something, like more tolerable

of it. Until something dumb happens like I forget to pick my foot up more (foot

Drop), and trip over nothing.

I remember before I dealt with this I used to think when people would say

something about their back hurting, or something about sciatic pain that it was

no big deal. I now know that I was sorely mistaken and I wish I had never

thought that. And anyone who says they have a " touch of the sciatica " , well I

have no idea how someone could say it is a touch. I have never been in more pain

in my life. And it isn't something I can explain to anyone. I mean " it hurts "

doesn't begin to cover it.

And I have gotten to a point where I am so sick of telling my story to people,

Doctors and what not I am just sick of it. All I want is my life back, I want to

be able to play with my kids, make love to my husband with out being in pain, go

hiking and go camping.

I think I finally have good doctors, they seem to care, and they are not working

for my place of employment. I feel as though their goal is to get me back to

work, to my life and not to the extent that they are sending me from Dr. to Dr

trying to get someone to tell them I am faking. I feel as though there is

finally a light at the end of the tunnel.

I have a surgical consult next week, hopefully to get some answers!

Keep hoping!

Sara

From: cathy mccarthy <bbhorsetack@ roadrunner. com>

Subject: pain

spinedisorderssuppo rtgroup@gro ups.com

Date: Friday, February 6, 2009, 8:22 PM

Hi all, long post.... sorry...

I just went through a " severe pain event " this week, as I call them. (shoveled a

whole lot of snow.... dum thing to do,... stupid...) Other names for them... I

will not post here. :(. You all know what I am talking about. SEVERE PAIN...

" OUCHHHH " . Yes it really really hurt and I hope to say it is over... for this

time anyway... I think... HOW do I tell my fam-dam-ly what it felt like???? (

they do not understand) and why I get soooo quiet and withdraw into myself when

it is happening??? ? THE PAIN? and how TIRED it can make you feel, much like you

had the flu virus or something? I look just fine.... as fine as someone who has

had chronic pain for a long time and a nights sleep is a rare thing if not a

" blessing " . Right now as I am writing this my left leg is having spasms and

hurting like hell... and feels as cold as hell... my back hurts...nothing new

there, and today is a " good " day!!!! aaakkkk.

GEEE! My Doc thinks it is in my head....I AM IMAGINATING IT...(I need a new Doc)

and BTW, I have been dealing with this since 1990... (had a Transverse Myelitis

episode then). So ya... this is not new to me but still have not figured out how

to explain to my PEOPLE close to me, how it feels. You would think after all

this time (GOOD GOLLY 19 years!!!) I should of been able to. But no. So do not

feel bad if you can not either !!!

One new question for the group is. how do you explain PAIN. Our level of pain.

It is not NORMAL. I take pain meds. I THINK they are low dose. 30 mg morphine

suphate 2tms a day, 2 percoset at night, tylenol during the day, meloxicam...

that sort of stuff. Other stuff too. hmmmmmmmmm. Is it low dose... do you not

think???? I need a new doc... I like this guys staff... the nurses and NP he

has. But gosh. Your " Doc " really does have your 'life' in his hands. do you not

think???

Another question, I do take alprazolam, .5 mg at night. I think it does help me

to sleep. However, I do have 2 weeks worth of cymbalta to try (14 caps). Should

I try it? AM I DEPRESSED??? Probably. Does either help with the pain?

Thank anybody who read this long post. Sorry. Had to yak at somebody who might

at least DOES understand. Thank you all for being HERE FOR ME. I do read all the

posts on here.

in NH

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Oh, I have to add that last night, after adding the zanax to the ambiem and

tylenol Pm I already take, I was able to sleep all night, Until about 4 this

morning, no getting up at all, But at 4 I had to get up, and go sit in my

reclyner, on the heating pad. So that is a victory! The first night in a Long

time with out getting up every 45 minutes or so in pain and not being able to

get back to sleep!! I was amazedI I think it justknocked me out enough to ignore

the pain and let me finally get a good nights sleep!! WOW, I had forgotten what

sleeping the whole night was like!!

 

Sara 

From: cathy mccarthy <bbhorsetack@ roadrunner. com>

Subject: pain

spinedisorderssuppo rtgroup@gro ups.com

Date: Friday, February 6, 2009, 8:22 PM

Hi all, long post.... sorry...

I just went through a " severe pain event " this week, as I call them. (shoveled a

whole lot of snow.... dum thing to do,... stupid...) Other names for them... I

will not post here. :(. You all know what I am talking about. SEVERE PAIN...

" OUCHHHH " . Yes it really really hurt and I hope to say it is over... for this

time anyway... I think... HOW do I tell my fam-dam-ly what it felt like???? (

they do not understand) and why I get soooo quiet and withdraw into myself when

it is happening??? ? THE PAIN? and how TIRED it can make you feel, much like you

had the flu virus or something? I look just fine.... as fine as someone who has

had chronic pain for a long time and a nights sleep is a rare thing if not a

" blessing " . Right now as I am writing this my left leg is having spasms and

hurting like hell... and feels as cold as hell... my back hurts...nothing new

there, and today is a " good " day!!!! aaakkkk.

GEEE! My Doc thinks it is in my head....I AM IMAGINATING IT...(I need a new Doc)

and BTW, I have been dealing with this since 1990... (had a Transverse Myelitis

episode then). So ya... this is not new to me but still have not figured out how

to explain to my PEOPLE close to me, how it feels. You would think after all

this time (GOOD GOLLY 19 years!!!) I should of been able to. But no. So do not

feel bad if you can not either !!!

One new question for the group is. how do you explain PAIN. Our level of pain.

It is not NORMAL. I take pain meds. I THINK they are low dose. 30 mg morphine

suphate 2tms a day, 2 percoset at night, tylenol during the day, meloxicam...

that sort of stuff. Other stuff too. hmmmmmmmmm. Is it low dose... do you not

think???? I need a new doc... I like this guys staff... the nurses and NP he

has. But gosh. Your " Doc " really does have your 'life' in his hands. do you not

think???

Another question, I do take alprazolam, .5 mg at night. I think it does help me

to sleep. However, I do have 2 weeks worth of cymbalta to try (14 caps). Should

I try it? AM I DEPRESSED??? Probably. Does either help with the pain?

Thank anybody who read this long post. Sorry. Had to yak at somebody who might

at least DOES understand. Thank you all for being HERE FOR ME. I do read all the

posts on here.

in NH

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Share on other sites

Oh I wanted to add that I have been through 3 dr's that told me it was all in my

head as well, and didn't do any sort of testing until this last month. I was

having increased migraines, um..2 or 3 a week, to the point of going to the

emergency room and getting Morphine shots to get rid of them, and the

neurologist told me it was because I was depressed. And I just thought it

couldn't have anything to do with being slammed in the face with a dumpster lid?

the same one that knock me cold? I mean since that is when the migraines

started? HMMMMM....

From: Lambert <glambert28@...>

Subject: Re: pain

spinal problems

Date: Saturday, February 7, 2009, 7:05 AM

Hi ,

I just wanted to reply, that I do read all the post I can also, and found your

post very heart wrenching. I can so understand your feelings about your people

not understanding your pain. My family know I suffer from chronic pain and

severe spinal problem that cause the pain, but still call on me to do things I

know I shouldn't be doing. I keep getting the looks and remarks about the amount

of meds I take, and my doc is really tight waded on the Rx's. Kinda makes you

want to just shake some sense into the sometimes. I also have a problem with

INSAIDs, even with the help meds to coat my stomach I have problems the perks I

take have 325mg of acetaminophen, which really give me a fit, but trying to

explain it to my PM is relentless, he keeps saying there's no way. Thinks I am

just playing him I guess.

I hate to see night time come, b/c its another battle trying to get enough rest

to make it through the next day, when I have the really bad nights, they all

give me a hard time about falling asleep during the day, my people even get mad

at me, the same ones that get their rest at night. It's like you can't win for

loosing.

The cymbalta did help me with pain for a little while, but I can't take it due

to a reaction to one of my other meds I take. Good luck on that, I would say do

what it take to get by. I am no doctor, but I do understand the problem of not

getting enough rest. I hope everything works out for you and you can get someone

to understand you suffering.

 

Bama,

 

The dog has seldom been successful in pulling man up to its level of sagacity,

but man has frequently dragged the dog down to his. Thurber

                                                                            

____________ _________ _________ __

From: cathy mccarthy <bbhorsetack@ roadrunner. com>

spinedisorderssuppo rtgroup@gro ups.com

Sent: Friday, February 6, 2009 8:22:34 PM

Subject: pain

Hi all, long post.... sorry...

I just went through a " severe pain event " this week, as I call them. (shoveled a

whole lot of snow.... dum thing to do,... stupid...) Other names for them... I

will not post here. :(. You all know what I am talking about. SEVERE PAIN...

" OUCHHHH " . Yes it really really hurt and I hope to say it is over... for this

time anyway... I think... HOW do I tell my fam-dam-ly what it felt like???? (

they do not understand) and why I get soooo quiet and withdraw into myself when

it is happening??? ? THE PAIN? and how TIRED it can make you feel, much like you

had the flu virus or something? I look just fine.... as fine as someone who has

had chronic pain for a long time and a nights sleep is a rare thing if not a

" blessing " . Right now as I am writing this my left leg is having spasms and

hurting like hell... and feels as cold as hell... my back hurts...nothing new

there, and today is a " good " day!!!! aaakkkk.

GEEE! My Doc thinks it is in my head.....I AM IMAGINATING IT...(I need a new

Doc) and BTW, I have been dealing with this since 1990... (had a Transverse

Myelitis episode then). So ya... this is not new to me but still have not

figured out how to explain to my PEOPLE close to me, how it feels. You would

think after all this time (GOOD GOLLY 19 years!!!) I should of been able to. But

no. So do not feel bad if you can not either !!!

One new question for the group is. how do you explain PAIN. Our level of pain.

It is not NORMAL. I take pain meds. I THINK they are low dose. 30 mg morphine

suphate 2tms a day, 2 percoset at night, tylenol during the day, meloxicam...

that sort of stuff. Other stuff too. hmmmmmmmmm. Is it low dose... do you not

think???? I need a new doc... I like this guys staff... the nurses and NP he

has. But gosh. Your " Doc " really does have your 'life' in his hands. do you not

think???

Another question, I do take alprazolam, .5 mg at night. I think it does help me

to sleep.. However, I do have 2 weeks worth of cymbalta to try (14 caps). Should

I try it? AM I DEPRESSED??? Probably. Does either help with the pain?

Thank anybody who read this long post. Sorry. Had to yak at somebody who might

at least DOES understand. Thank you all for being HERE FOR ME. I do read all the

posts on here.

in NH

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