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Pain Level 8

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Since a week ago Friday (Jan 4), I've been experiencing an ever increasing level of pain. There are actually two pain areas/levels. About half of my back is at a Level 4, and there are at least two pencil-sized spots that average about a Level-8. Touching the Level-8 area always triggers that high level of pain. The challenge is that due to the fact that I am a neck breather, I must sleep on my back, that is, on the sensitive spots. Consequently, from Monday thru Thur, I could not fall asleep until I was totally exhausted; and then, I would not sleep more than 3 hours. I spent most of the day facing the TV, without really watching it. I was in too much distress to even come on this board.

The last two nights, I've been able to sleep over 10 hours with the help of moderate level of oxycotin and a heating pad. When I awaken (like as I write), I feel "druged". Not surprising. But at least it is an improvement over the middle of the week.

I did go to my PCP. She said the description of my pain suggesting Shingles. GREAT! However, the teltale rash has not appeared. So my caregiver/wife must add rash-hunting to the rest of her tasks. I will email my symptoms to my medical oncologist today.

I may have trouble responding to the posts of my friends, here. I am either in a great deal of pain or I'm druged.  Hopefully with a little professional help, I will be able to resolve the issue. Rick.

D Lewis's picture
D Lewis
Posts: 1565
Joined: Jan 2010

So very sorry to hear you are going through this.  I hope you see improvement soon.

Deb

Ladylacy
Posts: 586
Joined: Apr 2012

Sorry to hear about your pain.  I know my Aunt told me that my 85 year old Uncle had shingles and that he said the pain was horrible so I hope it is not shingles.  They say that shingles is horrible and that we should get the shot for shingles if we had chicken poxs as a child.  I keep putting off getting the shot and don't know if my husband should get it due to his cancer.  Guess I need to ask the doctor this week about that.

As far as not being able to sleep due to the pain, my husband is going thru some now in his shoulder and chest which we think is due to the muscle in his chest used to reconstruct his throat and the radiation damage to his spine.  He says it wakes him up at night and the only way he can get some rest is to go sleep in his recliner.  He does have pain medication to help.  He is also a neck breather but is able to sleep on his side.

Hope you get to feeling better soon.

Sharon

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

No offense to the professional involved, but you need to pursue this beyond the PCP level.  Shingles isn't likely, though it is possible without the telltale rash.  It would be one area, not two, and it would follow a specitif dermatome.  On your back, that would be the course of cutaneous sensation for one spinal nerve.  You can look the chart up on the internet.

With pain as severe as you describe you really need seen and examined by someone with experience at this.  That exam might be initiated at your oncologist's office, but may have to involve a neurologist, etc.  You need relief and that requires proper diagnosis early on. 

 

Sorry for the problem. 

 

Pat

 

phrannie51's picture
phrannie51
Posts: 4091
Joined: Mar 2012

that you were having extreme pain....Shingles is something I never want to face......tho after reading LTS's post, I'd be getting it checked out to make sure that is what you're facing.  I sure do feel for you on this set back.

p

corleone's picture
corleone
Posts: 195
Joined: Jul 2012

I second Pat, his suggestions are very good. Your PCP might be able to help, or maybe not. A neurologist is probably the best option. Your description is rather vague though, one can’t tell exactly what it is without a physical exam. Need to know the exact location, where is referred (starts from one place and goes where) when is triggered (is it continuous pain, or accentuated with movement, respiration, etc.). An X ray would also probably help, to see if there is no herniated disc, etc.

You can provide all this info to the physician, during the medical consult.

katenorwood
Posts: 1898
Joined: May 2012

Rick,

Did this pain begin before your biopsy of your lung ?  Did your pcp do an xray of your lungs ?  If not please get in asap.  Are you having any problems with breathing ?  My lungs have enlarged due to my condition....and I experience pain at times that bring me to my knees.  My husband had a blood test done to confirm shingles....did your pcp do this ?  I am so sorry you are in this much pain....it's undescribable to others that haven't had it.  I pray that things resolve very soon Rick.     Katie 

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Have an "urgent" appointment with radiology oncology at UW to help resolve the back pain. In too much discomfort to post very many of the details. My primary emotion? Anxiety. Rick.

NJShore's picture
NJShore
Posts: 412
Joined: Nov 2012

Rick,

glad to hear your pain is getting attention it deserves.

best of luck, and my prayers are with you!

kari

Mrs. Sarge
Posts: 205
Joined: Apr 2012

So glad you're getting in to see someone.  I can't imagine what you're going through and it indeed sounds like shingles might be going on but you have to know!!  Let us know.  We care.

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

What a nightmare.

 

CivilMatt's picture
CivilMatt
Posts: 3347
Joined: May 2012

Rick,

 

I wanted to add my support to you feeling better and pain free.  Here’s hoping your doctors can help this situation and quickly.

 

Matt

jim and i's picture
jim and i
Posts: 1785
Joined: May 2011

Wow! I feel for you. I am praying this resolves really quick.

God's Peace. Debbie

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

I start 5 days of radiation treatment later today. The idea is to shrink the tumor and reduce the pain. Chemo, to be started later, will "really" address the tumor. I don't know if the chemo will start Friday as planned or whether it will be postponed for a week or so.

I got a Fenatyl Patch yesterday. To handle the pain until the radiation becomes effective. I got the first good night sleep in weeks. The patch brings the pain down from an 8 to a 3, and a heat pad brings it down further.

Luckily, I am able to eat and keep my hydration up. I am still attempting a healthy diet with lots of fruits and veggies. Thanks for all your support. Rick.

Skiffin16's picture
Skiffin16
Posts: 8219
Joined: Sep 2009

Here's to frying that sucker and then smacking it around with some poison.....

Shrink it up and spit it out....

Hope you have a mild week-end Rick..., will be thinking of you and your journey,

John

 

hwt's picture
hwt
Posts: 2237
Joined: Jun 2012

For some reason, I want to say I was told not to use a heating pad with the patch...maybe I'm confused but you might want to ask at the pharmacy. Sorry for your pain, wishing a speedy recovery for you.

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Not a good night after first treatment. Everytime I drank anything, I vomited within 10 minutes. However, I've modified my intake, so as to take a sip every 10 minutes. AND I MEAN A SIP. That I've kept down so far. Going in for electrolyte check and more rads. I am way too sick to participate in board conversations in any meaningful manner. Rick.

Noellesmom
Posts: 1399
Joined: Aug 2010

Seem to be in order at this point, Rick.  Check with your doctor.

phrannie51's picture
phrannie51
Posts: 4091
Joined: Mar 2012

There are enough good nausea meds out there that I'm hoping they'll give them all a try in order for you to get the nausea under control.  Puking every time you so much as swallow a little water would not only be hell, it's a direct route to dehydration.  If they didn't send you home with a script for Emend, prod them...it's great stuff!!

p

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Well everything is relative, so even "good day" has an altered meaning. Good compared to the previous week.

Well, I was dehydrated after the day of vomiting. Got 4 hours of IV Fluids. I think the cause of the severe nausea was the Fenantyl Patch. So the vomiting stopped after the patch was removed for 12 hours. Still some nausea, but controlled with meds.

I learned a clinical test for dyhydration. That is to take the patient's blood pressure while sitting, and then 2 minutes later while standing. If dehydrated there is a big difference between the two blood pressures. Mine were (about) 149/?? sitting and 104/?? standing. Don't know what would be the normal range.

Finished 3/5 radiations. Apparently, the tumor shrunk. At least the pain is down from 8 to 4 (without oxycodone). I take the pain med to sleep and I might take it before a long car trip (like to the hospital/clinic). Pressure on my back greatly increases the pain.

I've had 1/4 chemo treatements, which constitute the first round. After each round, a CT will determine whether the chemo is doing any good. Let's hope and pray.

It is hard to concentrate, post, or do anything. But I will attempt to post at least a couple of times a week.

I am able to eat bland food. My current favorite is Cream of Wheat with Whey Protein Powder mixed in. Even the thought of something sweat or fatty will make me vomit. It takes forever to eat; two hours for a bowl of hot cereal. But I got a bowl of Cream of Wheat down, a scrambled egg, and a litter of water all down this morning. It's hard to imagine that this is a great accomplishment, unless you've been here. Rick.

phrannie51's picture
phrannie51
Posts: 4091
Joined: Mar 2012

I  imagine that moving to a level 4 from a level 8, is almost a reason to start singing!  Everyone of the pain meds will affect somebody with nausea...gotta try them out just like the nausea meds to see which ones work.  Most you have to have something on your stomach before you take them, or it's a guarentee you'll be bowing at the throne.  Glad they figured it out quickly for you. 

You betcha a bowl of Cream of Wheat...plus a scrambled egg and liter of water are great accomplishments....it takes some real fortitude to do it.....so a pat on the back for you, Rick!

Tucking you into my pocket for a good CT at the end of this round.

p

ditto1
Posts: 653
Joined: Mar 2012

JUST WANTED YOU TO KNOW WE ARE THINKING OF YOU AND YOUR IN OUR PRAYERS.  GLAD THE PATCH IS HELPING AND THE TREATMENSTS CAN COME TO YOUR RESCUE.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Sorry to hear you are in so much pain Rick.  I don't know which is worse though, pain or nausea.  They both suck.  I hope you start getting relief soon.  I worry about you becoming dehydrated.

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

Hope it is not shingles buddy, but if it is, I'm sure with the right Meds, the pain can be controlled.

thinking of you today.

best

mike

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Metastasis to the lungs and to the spinal bone(s). Hurts like H***. Chemo/Rads is not picnic either. Rick.

phrannie51's picture
phrannie51
Posts: 4091
Joined: Mar 2012

Are they going to change your treatment any...like possibly use radiation on your spine?  I missed this part of your posts....I'm really sorry.

p

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

 

Well, maintaining my weight has once again become a challenge. The first time was during initial radiation for laryngeal cancer. I successfully met that challenge. While everyone predicted I would lose 30 pounds, I actually gained 8. The challenge at that time was pain from swallowing.

 

Today the challenge is nausea. Absolutely everything I eat makes me nauseous, even with Ondansetron on board. However, in the first half of the day I've been able to get down 3 Bisquick pancakes (with fresh cut strawberries) and an 8 oz. milk shake (whole milk, ice cream, and whey protein powder). So, it's a start; but is it enough?

 

 

Because of the restricted esophagus, and the consequent mental energy needed to insure everything is chewed into a mush, I have reverted to liquids and stuff like pancakes which dissolve. The blended cabbage is been temporarily abandoned. (Just can't face eating cabbage at the moment.)

 

 

With medication, the pain levels have been acceptable.

 

NJShore's picture
NJShore
Posts: 412
Joined: Nov 2012

Rick,

you certainly have had a lot to deal with lately. it's good to hear that you've done well to get the right help, and that radiation will shrink that tumor. That you found the culprit of nausea in the patch, and  that you are getting relief when you need it with lesser drugs. And to be eating!  You are my hero. I am sure it doesn't feel great, but from what i can see from the sidelines, you are managing really well.

you are in my prayers.. 

kari

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Haven't been on  here for a while,praying you don't have shingles and you get a good  nights sleep. bjw1955

baileybell
Posts: 7
Joined: Sep 2011

I am sorry you are not feeling well. Thinking about you.

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