Re: Anyone else have problems describing your pain?

[Guest guest]

> ,

The members here one time did an off topic to describe our pain.

We have had some interesting descriptions.

I once told a doctor it feels like someone put a clothes pin on a

tender part and never goes away, I also said it feels like a

bicycle scrape that stays there.

I think you have to describe it in a way that everyone can relate to.

My SI pain in my buttocks feels like a knife stuck in there and it

stays and if you sit down on it or put pressure against it , it

would hurt.

If someone else can relate, I think they understand. Others have great

descriptions, maybe they will post again. Becky had some great ones

Bennie

>ladyluvvylinda wrote:

>

> What is your pain like? Do you have a hard time describing it? Do

> you know what the " right " words are?

[Guest guest]

,

When you wrote " Sometimes I take a breath, not even a very deep one,

and I have a sharp, shooting pain at my upper right bottom of my

trapezius, " it made me nod thinking about my shoulder problems. Have

you had your shoulders checked out? The infraspinatus tendon runs

approximately across the back of your shoulder blade to the shoulder

joint, and mine is chronically inflamed (and thickened). It feels

like you described nearly constantly, especially with a deep breath

or if I try to put my shoulders into what the physical therapists

call " normal " position. It didn't have a full tear like the one I had

repaired (the supraspinatus tendon), but it still hurts like heck all

the time.

I wonder if the " rolled towel " pain you described initially wasn't

when an injury happened. I had a " spontaneous, full thickness tear "

on the repaired tendon. The docs didn't believe me that I hadn't had

some extreme trauma and halfway thought they'd get into the shoulder

and find that the MRI reading was wrong... until they did the

surgery. They told my husband that, in spite of the imaging studies,

they were still shocked to see a tear that bad in a patient who

didn't " do " anything. (I guess spontaneous tears are known to happen

in the elderly, but I was 38 at the time of surgery.)

I don't profess to know much, and I'm surely not a doctor. But if you

haven't had that examined, I would look into it. My docs and I

believe that, because my cervical spine has so many mechanical

problems, over the years the neck troubles have caused the

musculature and tendons to shift, deform and become injured

themselves in an attempt to stabilize the neck.

Who've thunk? (Is that even a real sentence?)

All best,

in Oregon

[Guest guest]

--- " ladyluvvylinda " wrote:

>

> > Does this sound consistent to anyone with anything I may be missing?

> Does this describe it so that you can understand it?

>

-

None of us are doctors, but what you describe sounds perfectly like

pinched nerves coming out of the upper spine, such as that caused by

disc problems (or other similar causes).

Have you had an MRI of the neck and back? That should show what is

pressing on the nerves to cause these symptoms. What you describe is

nothing unusual for this kind of condition, so it's surprising your

doctors don't seem to understand you.

Cheryl in AZ

Moderator

[Guest guest]

--- Cheryl in AZ wrote:

>

> None of us are doctors, but what you describe sounds perfectly like

> pinched nerves coming out of the upper spine, such as that caused by disc

problems (or other similar causes).

>

Hi ,

I too have had trouble describing my pain, but I think you managed to

describe it (both my pain and yours) perfectly! I agree with Cheryl,

because it sounds very similar to severe upper back/shoulder pain I had

recently, except mine is the upper left, not the right.

Mine comes and goes, and my PCP says it may be a pinched nerve. I know I have

several pinched nerves, at least one in my neck and another in my back, because

my neurologist did a nerve conduction study.

When the pain is at its worst, I can't take a deep breath or even roll

over on my left side because it hurts too much.

I'm so sorry that you are going through this. I understand very well

wanting a doctor or medical professional to show some sign of

recognition when you try to describe your pain, only to have them act

as if they had never heard anything like it before! It's incredibly

frustrating.

Take care,

JoAnn

[Guest guest]

" Cheryl in AZ " wrote:

>

> What you describe is nothing unusual for this kind of condition, so it's

surprising your doctors don't seem to understand you.

Cheryl-

It's been deflating to still experience pain post discectomy now

2.5 years. I had high hopes of eliminating it since I'd waited so

long for something to be done, going bankrupt in the meantime, but it

didn't happen for me. Is it maybe that I'm still wanting to get pain

free and looking for another cause, but need to accept that isn't

likely to happen?

I have hopes of learning some reason why, despite my pain making

perfect sense to you and others here, I still feel inept when I

am asked to describe it by anyone. If it's someone outside of medical

appt, their eyes fog over before I get into the second sentence.

Inside a medical appt, they make me feel defensive.

I found out later by reading the medical reports that the original

PA had written that my MRI didn't match my complaints, because

although there definitely was evidence of real issues, the disc

problems should have been causing pain on the right side, and I was

complaining about the left side.

What I had told him was, I had been self managing right side pain

that had increased over the last 12 years (at that time) and had

sought treatment because it was so bad now that I was starting to

feel it on the left side too! I had woken up one morning and not been

able to get out of bed because whether I turned right or left I had

excruciating pain.

I didn't communicate well enough obviously. I caused delays myself

by marking on the picture of the body where it most hurt, the left

upper back because that was what was the newest, the latest, and

scaring me, that I felt it there now too. How is a patient to know

how to communicate effectively?

I can't believe some of the stuff I read in the reports, how

differently two people can see the same facts. It makes me want to do

what a 2 year old will do, lay their hands on both sides of your

face, and turn your head towards them to look them in the eye while

they try to tell you something effectively making you listen!!

Thanks for the validation. I think I'm going crazy sometimes.

in Oregon

[Guest guest]

in Oregon wrote:

> My docs and I

> believe that, because my cervical spine has so many mechanical

> problems, over the years the neck troubles have caused the

> musculature and tendons to shift, deform and become injured

> themselves in an attempt to stabilize the neck.

>

>

Hi -

I probably should have said at the upper right back, bottom of my

SHOULDER BLADE instead of trapezius. Mine sounds lower. However, I

hear you, and it makes perfect sense to me what you've described. I

just recently got a medicare card in the mail, haven't signed up yet

for part b, but will be getting real medical treatment again soon and

I will pay attention. I've been told shoulder and rotator cuff

surgeries are really common for over 50 age group.

I'm certain that a large component of my pain is from the body

attempting to stabilize the neck. The last time I had insurance, post

surgeries, I received about 4 months of 3x week physical therapy to

get me vertical and moving again, and they were very good, I think they

might have noticed if it were a shoulder problem, but again, I am

paying attention as I go forward and start seeing doctors again and

thanks again for the validation.

[Guest guest]

Cheryl wrote:

>

> None of us are doctors, but what you describe sounds perfectly like

> pinched nerves coming out of the upper spine, such as that caused

by disc problems (or other similar causes).

>

> Have you had an MRI of the neck and back? That should show what is

> pressing on the nerves to cause these symptoms. What you describe

is nothing unusual for this kind of condition, so it's surprising your doctors

don't seem to understand you.

Cheryl-

I had an MRI before the surgery. Afterwards, I asked if they would

do another MRI to see that the anterior cervical discestomy had

worked to free the nerves? They said No, an MRI is only a tool.

I thought What? Don't you need to see that what you did worked? This PA was

really snotty towards me, said my symptoms didn't match the MRI and I had a

referral by my PCP to a different neurosurgeon as a second opinion who found

everything consistent and performed the surgery.

Anyway, before the surgery, I had both nerve roots impinged, no disc

left at C5/C6. They put in a donor disc.

I am wondering at what point the doctor recommends another MRI. or

catscan? I am wondering if I should pay for one myself out of my

backpayment when I get it.

It feels like they've given up on finding a cause for my pain. Shouldn't they

keep looking if it's still there after surgery?

Especially if it spreads as it has into my chest and down my right

side?

in Oregon