Mrs D, and others who can help
 

I posted on the chronic pain forum and only got a little feedback. I'm in pain, lots of pain and it's simply more than I can live with anymore. I've been taking hydrocodone in the 10/500. It is doable. I'm taking 3-4 of them a day. My biggest problem is probably still my tailbone/sitdown area. I've exhausted all the nerve blocks and frankly the new pain specialist doesn't think nerve blocks i.e. steroids is a good idea for me. The hydrocodone dulls it some. But it is always on my mind. Sometimes I have to tune out conversations and pop back in hoping I haven't missed much. But I know the person I'm talking to knows I'm not really there. Pain is all I can think of. It's just hard to concentrate on anything and i'm so irritable. Noise of any kind makes me want to scream.

I'm finally walking a little without crutches. But not too far or too much. It's still a limp rather than a walk. I'm having a test next week to determine if the neuropathy is affecting my bladder. And I had a little boo-boo under my eye right in the fold of the lower eyelid. But after it didn't heal for about 3 weeks I called the doctor and went in. He thinks it's a skin cancer and has sent me yet to another specialist. It will have to be removed very carefully. There isn't much skin under my eyes and the muscles to the eyelids are very close. So you need someone who knows what he is doing. I understand this doctor is good.

Back to my original problem. The hydrocodone isn't doing it. And you all know how bad I hate pain medicine. I'm taking Lyrica which keeps some of the burning down. I don't know if the fractures accross the nerve are irritating the nerve or if there is a new one. But I stay sore, very sore all overthe sacral and hip areas. And if I sit on a hard seat I'm in the bed the next. All of this has affected my self image terribly. I realize now that I'm a cripple. No other way to say it. And my self confidence. I'm afraid to get in the car and go like i used to. I feel as if I need my husband with me in case I fall, faint, get sick, etc, etc, This is so not me. He taught me to be independant. Pain is a wicked animal. It stalks me. Rakes it's claws accross me. Chases me into high grass then lights a match and watches me till I burn. And I'm burning. I want to enjoy life again. There is so much more I want to do before I die...I have to make some decicision about pain and what to do about it before it gets any worse. I can try oxycodone or ask for a morphine pump. Mrs. D, you mentioned this to me once before. Do they work well? What problems do you forsee with it? I just can't keep living like this.

Billye

Hi Billye
 

I read your post and it gave me the shivers. I feel for you, you probably are sick and tired of being sick and tired. Before I had the surgery on my spine, I was in so much miserable pain my body was deformed looking and I was leaning to one side. I also had a baby. I couldn't sleep,eat,sit, walk... nothing. I didn't use the internet much back then and didn't know what pain meds were available to me. The only one that completely took the pain away for me was morphine. Other codiene based meds only took the edge off for about an hour or two before I needed another pill.

There is a possibility that you could be trapping,irritating a nerve in your tailbone area. Have you had an MRI? Maybe a pain clinic can help you. It doesn't sound as if your medication is giving you the releif you need. When I am in pain I use heat alot too. I have an electric heat pad,tiger balm,and a hot bath. My disc L4-L5 has reherniated,and gives me alot pain in tailbone area and sciatic pain.

I think if you found a doctor to help you manage all this pain it would help you.

I hope you feel better soon. Sorry to hear about all the pain.

Billye, I am so sorry to read that you are suffering so much, it's just not fair at all, i am wondering if a T.E.N.S machine may be of some help around the tail bone area, i mean using it in conjunction with what ever medication you need.
I was using a very similar device to a Tens machine before my hip replacement operation [plus very strong magnets], they both did help with the severity of pain.
I really do hope you can find some relief from this awful pain soon.
take care
Brian

Oh, Billye..
 

I am so sorry for you....

Brian's suggestion is good. Also an IFc unit at home may also speed healing.
PT's usually suggest them.

I know how you feel about losing independence. This past year for me has
had shades of that. I often have my husband come with me now when long walking heavy lifting errands bog me down!

Have you tried Lidoderm patches? They work for me quite well. I'd be miserable without them.

I'm so sorry to hear you feeling this way, Billye.
 

I don't have much more to add as far as possible pain relief methods go--I think trying something local, like the TENS or the Lidoderm patches, would be worth it before going onto heavier meds or considering a spinal implant, just to see if the edge can be taken off--but I did want to send you empathy and gentle hugs (really gentle, I know).

you are all so kind, but
 

I've used the tens, used the Lidoderm patches, used the muscle stimulator, had PT for pain, I've just been there done that with all of the less invasive things. They take off the edge, but it's just not enough. I've even combined some of them. I used Lidoderm patches at night, Tens and pain med in the daytime and Muscle Stim. in between. Brian, I bought the magnets but can't find any place where they seem to do any good.

I do think it's possible there is some nerve damage in the tailbone, sacral area because one of the breaks was accross the S3 area. But nothing shows in the MRI's. The neuro says that doesn't mean there isn't damage there tho. It wouldn't be the first time that someone had pain that no source could be found for. And I've had this tailbone area pain for so long. We've done all kinds of testing to find the source of it. There is restriction on that side in the knee area, ankle area and some in the hip area. Like there is a giant spasm that won't let me go. I walk one sided like my spine is twisted some. And I lean to one side, one hip higher than the other.

I'm just so tired of the pain. Just don't know what to do and I'm very afraid it's not going to leave.

Billye

Billye
 

I'm sorry to hear you are suffering so much - but you cant give up.... I'm not expert on the meds at all - but did have a friend with severe autoimmune issues that also were accomanied by severe back pain - she was on constant morphine - which cut the pain but caused constant nauesa that she also had to take meds to control, and made it dangerous to drive on the med combo.... is morphine an option for you however maybe just at home? She also had a morphine pump put in her back - it cut the pain a great deal and reduced her dose of the drug - but she had a slow spinal fluid leak from it and resulting headache and had to have it taken out... this was several years ago - maybe they have perfected this technique more?

I sure hope they can find you some relief - sending good thoughts....:hug:

Hi Billye:

Besides echoing all the sentiments that others have wished you, I have only one question.

What does your doctor say about your pain? Does he truly think it's okay for one human being to be in pain like that?? I know physicians differ as far as pain management goes, but I haven't read where you mentioned how your doctor is addressing this.

Is he saying "we can get you a morphine pump because a morphine pump is what you need" or is he perhaps saying "what you need for your pain is this,(and he mentions some kind of product) THIS WILL DO THE TRICK".

Just curious.

No one should suffer like that. NO ONE!!!

I hope your doctor comes through for you. Sending you a gentle hug.

Melody

OH Dear! Billye....
 

If only I could have the magic ability to take some of your pain onto me even for a little while, I surely would!
I only wish I could come up with some medical 'magic' from somewhere. I'm not tho.
Just sending you as much extra love as you want or can handle and know you are near my heart and in my mind. - j

Thanks for all the love,
 

Melody,
He's not pushing anything. He is entirely leaving this up to me. He tells me after seeing the xrays and ct scans that he has no doubt that I'm in lots of pain. He is letting me call the shots. I have opted not to increase the medication up to this point. But I'm weakening. I just want a little of life. I've been "wearing" a lot of pain for years and then this year it all increased. My husband tells me I have new wrinkles around my eyes and mouth and he can tell they are pain lines. Grimaces, squints, tooth gritting, etc. They aren't an issue with me. But his ability to tolerate my crabbiness is.

I was just looking for more information. I'm not ready to make any decisions.

Thanks for all the inputs and good wishes.

Billye

Billye:

I'll make is simple for ya!!!

Pain stinks!!! No doubt about that.

It also changes your personality and makes you go from a loving, sweet person, that you probably are, to a grouch. Can't help it. That's what happens to people when they are in pain.

AND YOU ARE IN PAIN!!!!!! Not some headachy, little elbow, arm achy, kind of pain!

YOU ARE IN PAIN!!!!

The kind that needs to be addressed.

So get crackin!!! Go to the doctor, and start on a dose that you can live with.

You have no idea if you can be maintained on this dose or if you will someday need to increase it. I've read on these boards where many people have stayed on that one dose and they have had their lives back.

Just remember that pain meds DO affect the digestive tract.

And if you are on pain meds, eat more fibre and have some Dulcolax in the house.

It's a lousy subject to touch upon, I know, but Alan lived with it for a few years when he was on the fentanyl patch, and believe me, when you have your pain taken away, you can LIVE!!

You deserve to be happy and to be pain -free.

We love you.

:grouphug:

have you read Jane Brody in the New York Times? She is their longtime health writer and has been doing a series on Pain management (and the lack thereof in this country). I remember when she found out that hydrocodone is not for pain management but only for breakthrough pain, after she had been in tears over the pain after her knee surgery. Sufficient pain relief has been proven to speed healing, and increase the level of healing. You just don't want to ignore it. My rare and completely disabling condition can only be caused by ignoring pain. You can find some really wise, down to earth articles by her at nytimes.com. Try searching on "Jane Brody pain management". You can get opiates that can probably make you MORE functional, not drugged out.
Good luck,
Jane

Oh, forgot to mention that when Alan was on the Fentanyl patch, he took vicodin for break through pain.

He still went to work, and drove the car. The only change was that he HAD LITTLE OR NO PAIN!!

This was a long time ago, and I realize you have a lot going on that is much different than where Alan is at present.

But I was there 7 years ago when Alan was screaming at the top of his lungs at 2 a.m. because of his neuropathy pain. And when he put on that patch, well, he was a different human being. I think it saved his sanity. I really do.

But we each have to find our own way to pain relief.

I do hope you get to yours.

Love, mel

Bilye,

Can I make one more suggestion and it is not about pain meds. :) I just want to address the "sit pain".

I have posted before that I have lumbar/sacral issues and also evidently fractured my coccyx at one time in my life; just never knew I did it.

I have multiple issues as well as the burning sensations. It took me a year to get some things figured out. But have you tried or even thought about pelvic floor physical therapy? The therapists are specialized so they are hard to find. But my Urogyn had a list of therapists he uses. Between the lumbar/sacral pain and the hip, ankle and foot pain, I didn't know what to do and ALMOST did NOT follow through with this.

On my first visit, and no lie, I was driving there in tears. I almost turned around and went back home. Anyway, I am GLAD I went! I can't get into too many details here because it is graphic but after 3 sessions I could sit straight down without ANY pain. With ongoing sessions she started to do external work; ultrasound, etc, etc. When my 6 weeks was up, I had no pain whatsoever in my backside, pelvis, coccyx; she even somehow fixed my SI joint.

For me it was NOT painful. It was blessed relief...and for about a year. They (my Urogyn and my Spinal PM) both believe this may be a chronic thing. So, I have started the therapy back up again because the pain started in again. I just had the first session the other day and am already feeling some relief. Once you begin to understand how this all ties in and trust me, very, very complex you will come to understand how it all relates.

I still have the issues with the spine of course and ongoing nerve problems and burning but I am just throwing this out there because, I for one, did NOT believe it would help. I was dead wrong! I am completely amazed at how much relief I got. I still take meds of course for other issues but I can keep them low.

Oh, and I also had a coccxy injection which helped a bit. But this PT was something else! Please just give it some consideration or talk to the docs and see if it might not help.

Kathi,
 

I understand how the pelvic floor ties in with everything. We are starting to explore some things in this area next week. I'm having a Urodynamic Test. This will tell us some things about the bladder area. And more that is too graphic to put here.

Mayo told us I have pelvic floor dysfunction that is affecting my colon. I was to return for two weeks of therapy. My husband's back then needed surgery and my return is history. Ancient history now. I won't be going back. He couldn't tolerate the trip.

We are re-visiting some of the same area in testing that I had done a year ago. Perhaps it will work out that I get some relief from some of it.

I thank you for your long post. I know that sitting to do it wasn't easy. And I do appreciate it so much.

Billye

Billye
 

The morphine pumbs are fine,i fough my Dr. on taking Morphine for 3 yrs.
I don't know why,nurse thing ,silly your in bad pain ,they would start
with morphine er tab.30 mg. it not going to know you for a loop,like
after sugery. But it does help,i'm on 30 mg 3 times a day. now but
that's enough. She said i could use Fentanyl transdsdermal or like mrsd
said the l patch and cut it up small. I am finally amazed that so many
Drs. are taking pain more serious. Billlye it doesn't havee to last for
a long time..When I finally said ok i'll try it what a relieef on her face.

I aways felt if you found yourself angry,you got to speak up to your
dr. and tell him-or-her the truth this is bad not only am I in pain,I find
myself angry at those who love me...Tell he -she- it the way you told us
that was brave and that's wonderfull ,but that kind of pain is mot,
I sure he already knows but at the same time he can't guess..A dear
one has let me know that,if you can make it to Mayo in a strom.
You can tell your Dr. this is just to much pain right now..:( You
been hurting for some time now. Good luck and hugs Sue

For Sue,
 

Sue,
Typing so much when you are in pain yourself is just so sweet of you. I have a thing about pain meds. I don't want to become "addicted" to them. Around here you run into so much trouble trying to find someone who will prescribe them. And I do understand why.

But I also don't want to get caught in a pinch needing a medicine that is reasonable for me and be unable to get it. I found myself in this position years ago before my knee replacements and let me tell you, withdrawal without help is it's own kind of *ell.

Mentally..it's just something I'm having trouble doing again. I have to drive 50 miles to just see a pain specialist. Scheduling appointments and mail order prescriptions creates all kind of issues with my other medicines. They won't refill some of them until you are down to the last few pills. And just this last week, we discovered the special mail order pharmacy didn't receive my Humira prescription. So we are up against the wire with getting a new prescription, getting it mailed, their processing and special shipping for a medicine that has to be refrigerated from them to us.

That's one of the reasons I was looking for info for a pump. But I really don't know what all is involved with a pump. I guess I need to google and research. It might make me change my mind.

Well enough about this subject. We'll move on to something else.

Billye

:hug:

billye, have you done a search on nt for the pain pump or the scs?

billlya
 

ok I understand,no way would my pharmacist or Neuro would let you mail a
cripth for morphine or fantanyl. But i'm closer to the neuro then your pt.
Bob and I have each other's power of attorney.Which means he can
pick up the morphinescrip,if i call it in leave my name birthdate leave her the dr.
name and my phone no. But she has been off for 3 months so the 2 Drs. that are taking her place are told by her nurse practioneror replacement drs. i have called..My Neuro teaches 3 days a week and see's patient's only 2 times a week..Most patien't should have power of attorney drawn up by lawyer put in hospital file..If your husband has passed away or no children,
or living relatives,you may have trouble getting what you want done..Living
wills last only so long in some states check with your hospital.
I have never been given enough morphine where i became addicted but it
took me 3 yrs. to believe that. I call 2 days ahead no sooner than that..
I get sick and have taken compazene with morphine if i have major surgery.

If you think a pump would work,please ask your pt dr. how they work any
infections so on don't blame you,everything that works on some well
we are all different. Bob except for sugery rarly takes more then Darvoct.
But when he fell and broke that bone in pelvis area he told me he hurt so
bad,i mean he could't sit had to lay down or stand up,but would scream
trying to sit down trying to go bathroom. I finally got him in pt hospital,
because I couldn't help him for the 3 months for it to heal..And we all
heal so different...I feel so sorry for you,my younger son can only take
1 kind of pain pill or he get's so sick. I would talk to him about a pump
just talk because it's always been looked after by home heath nurse.
Unless they changed that as well.

Karen my nurse called Dr on call can eat some baby food,sorry to break in.
Luck to you Billye my heart breaks for you...Hugs and we do love you. Sue
Going to watch movie with Bob than Superbowl.

I too was wondering about the scs for you? That is what they wanted for me. I am not sure if it would work for your issues. Sending many thoughts your way and I am sorry.

pump
 

The suggestions I'd be able to make here all would be under-whelming. You're out of the range of expecting them to make a huge difference. Be that as it may: why not switch the narcotic to Oxycodone IR. It doesn't have to have the tylenol, so there's no cap to how much you can take. The combinations with hydrocodone make it hard to up the dose appropriately.

After surgery, I was giving Oxycodone SR (Oxycontin) and oxycodone IR (Immediate Release) for "rescue". In the end, I never used the long-acting, just the short acting.

There's also dilaudid and methadone.

I don't know a lot about the pump, but I see people on the spinal forum sometimes get spinal stimulators implanted to stop pain signals from travelling upwards.

Here's a video on the stimulator from my back surgeon's website.

http://www.pfol.com/newsroom.html

Bilye,

I am glad to hear that there will be more testing done. I went through the same things. And, yes, too graphic to state here as well as discussing the PT. ;) But, honestly, if Mayo is saying there is issues, I would try this specialized therapy FIRST before resorting to a SCS. I know, I am in pain too with the spinal bit and neuropathy. But as for all this other, the pelvic floor PT was the best thing I ever did. I just don't know much too much about the SCS' other than what people have said about them on the spinal boards. But everyone is different. I would really just do the research first which I am sure you will. :)

I feel so badly for you, Billye. You have been so brave fighting this pain for so long. I can't even remember how long, but it seems like a very long time...

I don't know a lot about some of the pain medications, but you may recall me mentioning my friend here who is on Methadone. I don't know enough about it to recommend it, other than IF you ever take it, don't do it without a doctor monitoring this...

My friend though at least has a life. Granted, it is not exactly like it was before, but she is able to get around and take care of a teenage son... I want to say she is on a combination of that along with something else-maybe Oxycodone... Can't remember.

Please, don't resist taking something to give you some comfort and pain relief. Your life may not be as it was before, but if this could give you some relief, a little peace and maybe a few smiles, wouldn't that be worth it to you? Taking pain medication so that you can have a life should be considered an acceptable means of obtaining relief. You will not be viewed in the same manner as someone who takes drugs to get high... Not one of us here in this forum would EVER consider you a drug addict, nor would those close to you who love you and have seen the kind of suffering you go through. Trust me on that!!! It really is OK...

What she says about it being hard to find someone to prescribe these-she is dead serious and not exaggerating in the least. I don't know how most of these doctors think patients like this can function... Many are left to suffer, which is outrageous!!! There is one very good pain management doctor close, although I don't know if he prescribes the pump...

Maybe this is primarily a problem with Texas doctors, I don't know...

I have rambled on enough... Billye, please go for whatever you have to take to give yourself a break... And, don't look back...

Cathie

Appt. today
 

I see the pain doctor today. 100 mile ride. Not my idea of fun. I've read all your posts, researched and researched and frankly this isn't an easy decision to make. I so don't want to take these medications. It just goes against my grain and that's even without having to consider the drying effects. So I'm making the trip but with no firm goal in mind. We'll see.

Billye

I am not a big med person and when my pain gets out of control mom has to encourage me to take a vicodin. She feels bad cause doesn't want to be a drug pusher but also doesn't want me to suffer. I guess when I have chosen to take it I had to work through the why I felt it was bad. Of course these drugs like opiates and narcotics I feel have there own issues and why I fear them but I think weighing the benefits vs the negative at the time to get you through the time. Also to realize there is a HUGE diference between someone in hell pain and needs these meds then the person who just takes them and has more addiction issues. I have mixed feeling on the scs. The doc who wanted to gave me a video and I did my research. If I can help you in any way please let me know. I think it was Dan on this board who talks abouth the fetnyl patch that he has been on and how he is not addicted but it gives him quality of life and the pros out weigh the cons. I saw a doc and he said that he would rather be on those drugs himself and not be in pain rather then be in pain with nothing but his first choice would be not to have the issue of course. I am sorry you have to drive so far and when I go to ucla its far so I understand. You don't have to decide now. I hope you find what works for you.

Spinal Cord Stimulator
 

Well..saw the pain doctor today. He is recommending a spinal cord stimulator. I pursued this idea 2 years ago and decided against it. I'm reconsidering it. I have an appt with my old pain doctor before having to make a decision and also my rheumie. I want their inputs into this idea. At this point I feel like "what do I have to lose?" and it might do some good.

But I'm researching it and it is scaring me again. Just don't know what to do. Today was a bad day. My mouthy little dog kept me up all night last night and I was so exhausted from my son and daughter-in-law's visit yesterday.

I'll think about this later.

Billye

A Chinese Proverb I love says:
 

'You will never know unless you try"

I kept that in my wallet for ages and ages until it self-destructed.
I've been very lucky in escaping spinal issues - I should have them. I don't.
I merely have soft tissue and tendon damages which heat/cold therapies and exercises can help [IF I do them].
In starting to learn about PN and all it entails tho...I was surprised at how many also had spinal problems, many of them BAD.
In your case tho, [again from all my reading of other's experiences] I would bet that the steroids are your culprit...I've a friend who has cancer-and has gone thru more chemo and rads than ANY ten other people with cancer...She too is suffering from those pesky fractures everywhere. All this only recently more so, same as you.
I believe that medications to help us NOW can hurt us later. As in both your cases. I suscribe to the following newsletter that keeps me as up to date a a mere 'patient' can be: http://www.medicalnewstoday.com/ I get it weekly. And spend at least an hour going thru all the goodies.
Like Daniella, I'm not really a big meds person. They scare me at times, all the side effects and especially the lesser known or rare ones-as I seem to get those. BUT- Painkillers DO have a time and place in the course of things. AND your pain does sound like a time and a place when they should be tried. As well as the stimulators. You won't know, until you try!
My heart is with you on this one. Only You know what might be best for you. If there is a 50/50 success/failure rate in anything...just HOPE HARD that you are in the success category! I believe many here will be doing the same for you as well. - j

This spinal cord stimulator ....can they let you wear it on the outside for a few days (before it's implanted).

When Alan went to his spine doctor (that's when we thought his PN WAS spine related), we looked into what Jerry Lewis has implanted. Can't remember the name of the thing. But what I DO REMEMBER is that they don't just implant it in your off the bat. They connect it and you wear it (on some kind of holster thing), that way you can determine if it is indeed what you need and if it indeed does the trick.

So if this is the case, give it a go. It's not permanent and you can always say "no, it's not for me" or you just might say "Aha RELIEF AT LAST".

Best of luck, my dear.

Melody

Can't offer any advice.....
 

only wishes for a speedy solution to your pain and medical issues. You have been through way too much.

Best of everything Billeye

Marlene