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CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/14/2011 5:14 AM (GMT -6)   
...when your doctor cries and tells you that he doesn't know how to manage your pain anymore?

I had a review and refill appointment with my PM today, and that's just about what happened. I'd told him by email already about all the problems I've been having, and he knew about me having been in hospital. He sighed and asked me "What are we going to do with you, huh?" and I said that I hoped he could tell me that. And he said quite openly that he was so sorry, but he didn't know anymore. I rather blunt honesty than false hope, but it's hard, and I'm devastated. Other than going overseas and doing the 'ketamine coma' which wouldn't be an option for me due to my ketamine sensitivity, I've tried everything, done everything.

I can't talk the pain meds I need anymore because of the effects on my stomach. As I told him, I struggle even to take BT meds now, because they just make me so unwell that it's barely worth it.

I left the consult in floods of tears and he actually came out to check that I was okay. He spoke to Mum rather than me, but took her aside to tell her how sorry he was and how hard he had tried, how hard he was still trying, and was in tears himself.

I'm over this guys. Every day is seems to bring more sickness and more pain, and I don't know how to keep fighting anymore :(
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 10/14/2011 8:10 AM (GMT -6)   
My dear friend

I was shocked that your doc behaved in the manner that ocurred. I would be devasted,us cp ppl put so much faith in our doctors that it is horrible if they tell you they cant manage your pain.

I am almost there with my pain doctor. I cut back on my oxycontin to prepare me for surgery in a month and I have slight withdrawel symptoms and I need a pill to minimize the withdrawel symptoms. You would think that Im asking for the world.

I will pray for you that you will receive the answers you need very soon.
crushed lower knee and vertical fx of tibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected leg continously without improving/allergic to metal in left leg/leg isnt straight/ metal removed in July//then total knee replacement/straighten out leg/more phsyxical therapy/take oxycontin,flexeril,cymbalta,vicadin for BT

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 10/14/2011 8:37 AM (GMT -6)   
Oh my gosh Laura, I sure feel for you hon. I have been in the same position several times, with doctors telling me we have tried everything and there's nothing more we can try for the pain. I too have left offices crying. Like you, I know it is devasting to hear but i too would rather be told the honest truth. Your doctor is hurting as bad as you are as he wants to help you in the  worst way. I too have tried ketamine and it had no effect. I wish there was something i could do to help you. In my case, since there is nothing that can be done, I have been working very hard on just accepting that this is the way it's going to be. It's not easy. I know that you too are doing the best you can with your complete body pain that you have. It can't be easy. Let me know if there is anything i can do to help you. You can email me anytime you want. I'm here for you.
 
Big gentle hugs and healing vibes sent your way.
Suzane

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 10/14/2011 11:29 AM (GMT -6)   
Laura
 
I cannot remember all the details of your case, but if you are that sensitive to pain meds and all, why can't they give you a pain pump? That bypasses the stomach, and puts the medication right on the nerve where it will be the most effective! They don't have to use near the amout of medication, just a small fraction to get a good result, and for spasms they can give you baclofen along with it. Have they ever attempted to give you a pain pump? I hate to hear what you have been going through, and I am just thinking surely there must be something that can be done to control your pain?????? If you have already tried this or if this has already been discussed,......well.......then.....it was just a shot in the dark trying to think of something that would be of possible help to you.
 
I do wish you well!!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 10/14/2011 11:52 AM (GMT -6)   
So sorry you're going through this and I hear you and empathize with your pain problem.  I would probably faint out of shock if one of the many doctors I've seen cried for me--not getting good care right now.  I have no answers because I have never been given any either.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 10/14/2011 12:12 PM (GMT -6)   
Hi white beard
Laura has full body CRPS and suffers immensely. She has an SCS and does have a pain pump (written in her sig. line).
 
We all wish you could find some answers Laura.
 
I hope you are able to get some sleep.
 
Suzane

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 10/14/2011 1:49 PM (GMT -6)   
Laura,
I also think that giving you the pain medications via the baclofen pump is a great way of lessing the side effects and the stomach issues caused by the oral meds. They are given at a much lower dosage, and delivered through the canula in the spinal cord already.
Do you have a large teaching hospital near you? If you do, find out what PM doctors are using the pumps there and make an appointment.
I know that CRPS is so difficult to live with, and there were times when I wanted nothing more than to die , rather than suffer one more minute, but that's not the way either.
There is hope, as dim as things seem right now, hang in there.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 10/14/2011 5:32 PM (GMT -6)   
Oh Laura I feel so bad that they can't figure out a way to at least control your pain. My heart goes out to you sweetie. I will continue praying that you get some relief from all of your health problems.

I am here for you as well. I am offering my email up to you as well. You can write me any time that you need to talk.

How devastating. I would feel the same way. Please don't give up. We're all here for you. Take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/15/2011 12:49 AM (GMT -6)   
White Beard and Sandi - I've had my Baclofen pump since 2008. I also have bupivacaine via the pump. Part of the problem getting other medications via this route is that I have VERY poor tolerance for most opiates, and also that my baclofen requirement is so high that it's not really possible to introduce another medication into my pump 'cocktail'. Believe me, if it's a valid option, we've looked at it :(

As for Teaching Hospitals - we don't work the same way as the US, but my PM doc is either the head or senior member of rehab and pain management across several places, including one of the biggest hospitals here :( As the saying goes, what (and who) he doesn't know probably isn't worth knowing.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 10/15/2011 1:08 AM (GMT -6)   
Laura,
They should be able to mix the necessary pain medications to be able to include them with the baclofen and the bupvicaine . My understanding is that the mixtures of medications is done specifically for each pump patient, so all they would have to do, is probably fill the pump a bit more often than they do now, but they should be able to introduce at least some amount of pain medications via the pump.
Have you been able to take any opiate more easily than another? What I mean by that is , is there one that causes you less side effects than another?
If there is, and they can use it in the pumps, the amount needed is so minute that there isn't any reason that they can't at the least do a trial to see if it helps bring the pain levels down some. Then if you respond favorably, they can reduce the oral medications and hopefully just use breakthrough or a lot less of the orals and titrate the intrathecal medication combination to work better to relieve your pain.
I feel so badly for you. I know what RSD/CRPS pain is like, and I know how difficult getting through the next second can be.......
Hugs, very gentle ones,
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/15/2011 2:44 AM (GMT -6)   
Sandi, I'm sorry that you know what CRPS pain is like. The problem - I think I'm not making myself clear, 'cos I'm not feeling well and it's hard to explain across internet - is that obviously you can only have X amount in the pump, yes? My baclofen requirement is so high that even reducing by the tiny bit we did to get the bupivacaine in there caused some compromise in the management of my dystonia and took me from needing refills every 8 weeks to every 6 weeks. When he investigated for me some time back, his estimate was that putting morphine in for example - which I don't handle at all well orally, and gave me only marginal relief when we tried intrathecal, would take me to needing refills about every 3 weeks. He's over an hour away and I don't handle car travel.

Thank you for the hugs...need them more than ever round about now.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

sunrisedusk
Regular Member


Date Joined Oct 2011
Total Posts : 23
   Posted 10/15/2011 11:20 AM (GMT -6)   
Dear Laura, You don't know me but I felt compelled to write because you reminded me of a time in my life.

After I became ill I spent many years in doctor offices trying to find something that would help me to function again and or cure me. (I thought medical science had all the answers back then). Finally one day my guru (doctor/mentor/hero) said to me, "Imme, you've tried *everything* and it's not helping. Why don't you give it a rest for a few years and then see if by then something new has come along the medical horizon."

This is not what I wanted to hear but it was impossible not to take his words to heart. I really tried to accept my medical condition and limitations. But when I did that I lost all hope too and became very depressed.

What I'm trying to say, (it's so hard on the net) is that there is a very fine line between acceptance, or resignation (worse), and hope. I found out that I simply must have hope along with acceptance or I can't go on.

Right now may be too soon for you, but with a little time and distance I would like to encourage you to look to people who still have hope in the middle of chaos. (Or anything else that give you hope.)

I know about a little about Dystonia and enough about CRPS to know they are devastating illnesses. Do you have a mentor or someone else in your life who's almost like a hero to you? You need them more than ever right now. Try to force yourself to reach out to all who might be of some small comfort.

{{{Hugs}}}}
Imme
Since 2001 I've been DX'd by many specialists: Fibromyalgia, Small Fiber Neuropathy, CRPS (right foot), Tarsal Tunnel Syndrome, DDD, Arthritis, Chronic Fatigue Syndrome, Myleopathic pain due to spinal cord compression, & Central Pain Syndrome. Compression Fracture L1 2003ish. MVA years ago, sustained a compound fracture Lumbar area.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 10/15/2011 11:54 AM (GMT -6)   
hi Laura,
Okay I understand there isn't enough volume space available in your pump to add inthrathecal pain meds right now. When are you due for a replacement of the pump? If you have the smaller pump, they can replace yours with a larger pump and then add the intrathecal meds. Morphine is only one of the meds that can be used in the pump. Fentanyl, dilaudid, and some others are now able to be used in them as well.
It might be worthwhile investigating replacing the pump size you have now, for one with a bigger bladder, not necessarily a bigger pump.
Have you ever heard of a group called pumpsters? It's on Yahoo. I wouldn't normally recommend checking out another group, but in your case, they are all people who either have the pump or are planning on getting one and there is a wealth of knowledge about all of the pumps, the meds that can be used in them, and pain management for conditions like yours. It might be worth checking into, you may find out something that you and your doctor aren't aware of that might help you. That of course, doesn't mean that you should leave us, but to give yourself a new hope .
Hugs again,
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/15/2011 11:57 AM (GMT -6)   
Imme, thank you for your kind words - and I see you're new here, so welcome.

I know the sense in what you're saying, I do. But I've had CRPS for 12 of my 26 years. My CRPS is full-body. I keep trying, but my body keeps betraying me.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/15/2011 3:30 PM (GMT -6)   
((((((Laura))))))) I am so sad you are going through this. I am not sure what the next step is, as it sounds like you have already tried everything. Is there any chance they can try the N-J tube just for meds rather than feeds?

I just don't know what to say. I understand why you are so devastated. You have already been through so much, it just doesn't seem fair.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/15/2011 5:36 PM (GMT -6)   
Sandi - sorry, because I know you're trying to be helpful... I've got a 40mL pump (and yes - I've been a member of Pumpsters since before I got my pump, but thanks :)). As far as I know that's the largest reservoir available. Even if there was a larger one, my body is too small for larger hardware...going on size/bodyweight, I should only have had a paediatric pump but we knew from my trial that I would require high dosing, so ended up going for the large pump.

I know other meds can be used, which is why I used morphine as an example. I've also had fentanyl with (I believe) low-dose ropivacaine as an epidural... the effects were no different to having the local on its own.

I'm not trying to be rude, but I've had CRPS of this severity for several years - I also spent a lot of my spare time researching, reading journal articles and I've got the medical grounding (I'm a vet) to be able to 'digest' them when the fog doesn't get in the way. When I say that we've tried everything, I'm not kidding. The only thing I haven't tried is the 'ketamine coma' as I said. And I'm not going there.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Post Edited (CRPSpatient) : 10/15/2011 7:30:20 PM (GMT-6)


sunrisedusk
Regular Member


Date Joined Oct 2011
Total Posts : 23
   Posted 10/15/2011 5:42 PM (GMT -6)   
Dear Laura, Thank you for the welcome.

I certainly didn't mean that you should be doing more than you already are in being hopeful and or accepting. Who am I to say what you "should" be feeling, and I'm sorry if I came across that way.

What I was trying to say, not very well, is that when someone told me I needed to accept my illness, I lost all hope. And I was afraid that when your doctor said he didn't know what to do, you had lost hope too.

I really couldn't live without having hope that my health might get better or I'd at least just feel better and I became very depressed. Fortunately hope seemed to find me somehow, some way. I don't really know how because nothing on the outside world has changed for me.

But it's a juggling act to hold both acceptance and hope at the same time. That's the tricky part and my wish for you is to find some hope again. And I probably better leave it at that or I'll insert foot in mouth again. ;)

From re-reading your post, I don't think your doctor has given up. He just doesn't know what to do at this point. He sounds like a wonderful doctor who really has your back. But he did make a mistake when he told you he didn't know what else to do. If my guru/doctor had ever said that to me I'd have been totally devastated too. That's only because I respect him so highly and you must feel the same way about your doctor.

Years ago I went to a very large University teaching hospital with a pain clinic that has a excellent reputation as does the doctor, I mean he's the best of the best. He referred me to another renowned doctor/clinic for the neuropathy. Point being this doctor understood that another doctor might be more helpful for me.

Is there any possibility that your doctor, as good as he is, might know someone who could be of more help with an area of your health condition? Sometimes it's really hard for doctors to admit that another person might know something they don't.

Imme

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 10/15/2011 5:57 PM (GMT -6)   
Hi Laura

It just breaks my heart that you have to go thru this. I have no idea what gastroparesis is like as I have GERD, and I know it must be nothing like the gastroparesis. It must be so hard trying to help one condition and it aggravates another. It's hard to know what to say, but you are in my thoughts and prayers.

very soft hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 10/15/2011 6:09 PM (GMT -6)   
I'm sorry Laura. I hope that I didn't offend you, I was only trying to help.
I'll butt out now.......
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/15/2011 8:43 PM (GMT -6)   
Sandi - I'm sorry. I've sent you an email.

Imme - he's consulted with doctors interstate and overseas, and he's not the only PM doctor I've spoken to - he's openly encouraged me to seek other opinions in case there's something he's missed.

I think I'm going to take a hiatus from the board. This is getting the better of me, it's making me angry and short tempered, very depressed and I don't want it to start affecting other members.

Take care everyone.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 10/15/2011 11:06 PM (GMT -6)   
Laura,
There is no need to apologize. I can be a bit thick sometimes and in my attempts to help, it seemed that I only frustrated /worsened things by having to have you explain things several times. I am the one who needed to apologize.
NO worries, I just hope that they can find something to help, hopefully medical advances will move at lightening speed so they can offer you something other than all that you have already tried.
As I said before, I do understand the pain levels, and frustration and feeling overwhelmed by the lack of progress in getting something done to ease the pain.
Hang in there Laura and don't worry about me. I'm not upset at all.
Hugs,
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis
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