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ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 12/24/2007 10:25 AM (GMT -7)   
Hi there. I'm new to the forum, but I've been reading some of the posts for a time now.

I have chronic mid-back pain and can't seem to find any relief. I seem to have a high tolerance for medications (this has been an issue all my life - when I was a kid, it took extra meds to relieve pneumonia, at the dentist it took more numbing medicine for a filling than for most people, a doctor's notes following a procedure say "it took an unusual number of doses before she was sedated," after a surgery a nurse told me "we gave you enough fentanyl to drop an elephant - I can't believe you are still awake and coherent!" and the list goes on...). Anyhow, that causes obvious problems with treating my pain. The docs have prescribed myriad medicines in an attempt to help, but none have really even touched it. The only thing that takes the edge off is percocet and then only after several doses. Which is weird, because stronger meds at higher doses haven't even touched it. I wish the docs would just put me in a room and watch me after taking these meds so they could see that they aren't working. I can completely understand that they need to watch out for drug seekers, but I think I've demonstrated to them that I am not in that category. After trying Kadian (if I remember right, I was up to two 80mg doses each day) and finding that it didn't work at all, I quit it. When I called the dr. office to report and talked with a nurse, she said "don't just stop it outright - you need to titrate down or you'll go into withdrawal." I said "well, I stopped it 5 days ago when I ran out of pills and I don't feel any different - what is the withdrawal supposed to be like?" She couldn't believe I wasn't feeling the effects. I told her I thought it made sense that since there were no EFFECTS at all from the drug that I would also not have and SIDE-effects and it follows that I wouldn't have withdrawal from something that never worked!

I just need to vent, I guess, and it seems like everyone here can understand. The docs want me to be depressed or to push some wrong diagnosis on me so they can say there is nothing they can do. I have tried every drug they wanted me to - including anti-depressents (and now I'm on Lyrica - an anti-convulsant). I have no pre-disposed opposition to these drugs or those diagnoses. I know they are very real problems, but they don't fit my symptoms. I thought maybe this was Fibromyalgia for a bit, but I don't have the right symptoms. I have also tried physical therapy, cognitive therapy, behavioral modification, you name it! I push through the days by using the techniques they've taught me, but none of it makes the pain go away! What's really frustrating is that they say they would be willing to be more aggressive with treatment if I were totally disabled - that is, I should give in to it and go on disability, stay home from work and let it take me over. What kind of advice is that!?!?

OK, I'm done for now. Thanks for just listening. (or reading, I guess! ) :-)

razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 12/24/2007 12:52 PM (GMT -7)   
first of all , whats wrong with your back . Did you injury it or what ? I would find out whats wrong before treating it . Maybe surgery will fix it.

Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 
"Life isn't about waiting for the storm to pass. It's about learning to dance in
the rain."
 

 
 
 



ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 12/24/2007 2:07 PM (GMT -7)   
Since high school, I would "throw out my back" about once every year to 1 1/2 years - severe pain for 5-6 days, but then it would resolve as suddenly as it started so I never went to a doctor. Then I had a sudden "event" when I picked up a bag of groceries 5 1/2 years ago. I could not walk or even sit up and was hospitalized for a week. Strangely, doctors could find no cause for this and sort of threw up their hands. The spinal surgeon actually told me "There is nothing wrong with you. I don't know why you think you are still in the hospital." I was like "um, hello - can't sit up, can't walk. Kind of puts a kink in the whole leaving the hospital plan!"

Since then I've had about every test, scan, procedure, and drug known to exist. I have a sharp constant pain in my mid back. Doctors have diagnosed me with Juvenile Discogenic disease, but that doesn't seem to be causing this pain as the degeneration is most severe in other parts of my back (where it doesn't hurt!). The closest they've come to finding it was during a discogram where they reproduced pain in the same spot, but that disc was one of my healthiest!

I am better now than I was when I left the hospital, but nowhere near recovered. I manage to make it through most work days, but come home and just crash. There is no comfortable position. The pain even wakes me up multiple times during the night. Many nights I spend curled up in a fetal position (the least painful) crying because it hurts so much. I used to think I was pretty tough, but the longer this drags on the more "whipped" I feel by it. I am grateful that I can still work - I know lots of people can't even do that, but I am a little fearful that I am going to run out of steam one of these days. I really think if they could find some way to relieve the pain for just a little while - a few weeks even - that my body would be able to work things out and I might be OK again. I almost don't remember what it feels like to not be in pain...

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 12/24/2007 10:25 PM (GMT -7)   
Hi Ryand!

And welcome to our family!! I'm so sorry that you have such horrid pain. Have you considered going to a teaching hospital/university and a doc who works there? Often they can solve the really tough cases. If your medical team isn't getting anywhere I would let them go and seek someone who is at one of these institutions. All states have one or more..

I sure hope you can find some relief. Please keep us posted...

Chutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 12/24/2007 11:47 PM (GMT -7)   
Thank you, Chutz. I have actually just started seeing a doc at the university. I've only seen her twice, so I don't know if she'll help yet. She tried Cymbalta with me the first time, but that didn't work. Now she has me trying Lyrica, but no luck so far. I asked about trying a Duragesic patch because I had some relief from Fentanyl once, but she wouldn't consider it and said it was "only for end stage cancer patients." I am encouraged a bit with her, though, as she does seem to really be searching for a way to help me. She was thinking aloud during the appointment and it sounds like she has some more things to try.
There is a down side though - she had me visit a PT she works with. At the first visit I was totally amazed with how he could hold my body in certain positions and make me able to move and turn in ways I've been unable to due to the pain and muscle spasms. I was totally convinced that he was the one who would finally help me! The second visit, however, did not go so well. about half way through the hour, he said to me "you seem like you have a great overwhelming unresolved stress in your life..." Well, I said yes, THIS is it! It is stressful to me that no one has helped me. He said "No, there is something else..." Well, if there is, I don't know about it. I love my job, my family is close and happy, I have tight and enduring friendships and a strong active faith. (But just to be safe, I have already pursued that possibility with a neuropsychologist who taught me some stress-reduction exercises and Cognitive Behavioral techniques and told me she felt I was handling things well.) Anyhow, he sat back and said (I kid you not) "I can't help you. I have no suggestions or ideas for you. There is nothing I can do for you." Then he left the room and that was the last I saw of him!
Still, I am hoping the doc at the university will pull through and find some way to help. Thanks for your encouragement. It is nice to talk to someone who knows what this is like.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/25/2007 12:24 PM (GMT -7)   
I totally agree you need to pursue this further as Chutz has posted and I do hope you will stay with us here and get the empathy and support that HW is so well known for .....as are the great ppl on here that do support and care,,,,,,,,
WE do understand believe me .........

Stay with us
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razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 12/26/2007 9:50 AM (GMT -7)   
wow you sound like me . I threw my back out just loading a dishwasher or feeding the cat or tieing my shoes . all the time . But then found out I had chiari and syringomyelia . So with all the meds I take they take care of my lower back too. What dr. did say is that my lower back is just real weak . And I had gone for some strenghten exercises  which helped alot . Yes I agree with others keep on it . Best wishes
 
I dont know if or what kind of dr. you are seeing but I would be seeing both a Ortho man and a Neuro dr.



Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 
"Life isn't about waiting for the storm to pass. It's about learning to dance in
the rain."
 

 
 
 



ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 12/26/2007 6:11 PM (GMT -7)   
razzle51 - how did they diagnose you? Three days after I came home from the hospital from the onset of all of this, I had to go back because of a really high fever and nausea. They did a spinal tap to find the infection and then I had a solid week of "spinal headache" before they realized that I had a leak in my spinal fluid from the tap. Could that cause syrinomyelia do you think?

razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 12/27/2007 3:52 AM (GMT -7)   
It could cause it . But I was having terrible headaches for over a period of 7 yrs getting worse by the day . The thing that tipped the dr. off was Nystagmus . The shaking of my eye pupil . Get it checked out .
Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 
"Life isn't about waiting for the storm to pass. It's about learning to dance in
the rain."
 

 
 
 



RACHEL UK
New Member


Date Joined Oct 2007
Total Posts : 11
   Posted 12/27/2007 6:27 AM (GMT -7)   

hi everyone,

        hope you all had a good xmas, iv just been catching up on the post's and im sorry to hear you are still in pain. iv been on morphine for bout 6 months now mst 60mg twice daily but my gp is looking to increase it to 100mg twice daily as still in pain. i had a bowel op when i was a baby but the adhesions have caused alot of problems. pain is something im used to now. amatriptyline is good for pain but have you tried gabapentin for nerve pain its good. ask your doc about it. let me know what happens.

    take care rach xxx


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 12/27/2007 6:47 AM (GMT -7)   
Hi Rachel. Thanks for the ideas. I've actually tried Morphine with no results at all and also amatriptyline and gabapentin without any results. Right now I'm on Lyrica, but again - nothing. I'm unfortunately getting used to having absolutely no relief from anything they try me on. I am fair-skinned and have red hair, and I've read and heard a lot about how people with those traits have an unusually high tolerance for drugs. That would be supported by my personal experience, but I don't think the doctors believe me...

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40595
   Posted 12/27/2007 10:44 AM (GMT -7)   
I have to take my pain meds first thing in the morning because if I wait until the pain gets bad, they don't work.

Have they said anything about dilaudid? That is stronger than morphine.

I wish you luck with this, I know how bad the pain can get and to have it all the time has to be awful.

Good luck to you finding something that works.

hugs,

getting by
fibromyalgia, chronic fatigue, clinically depressed and allergies


RACHEL UK
New Member


Date Joined Oct 2007
Total Posts : 11
   Posted 12/28/2007 4:18 AM (GMT -7)   

hi,

thank you for the suggestion i never  knew that drug existed, iv always just listened to my pain doc il have a word with him about it when i see him.

 thanks for the advice.

  take care rach xxxx


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 12/29/2007 6:04 PM (GMT -7)   
getting by said...
I have to take my pain meds first thing in the morning because if I wait until the pain gets bad, they don't work.

Have they said anything about dilaudid? That is stronger than morphine.

I wish you luck with this, I know how bad the pain can get and to have it all the time has to be awful.

Good luck to you finding something that works.

hugs,

getting by


Thanks, gb. Unfortunately, I am having the issue of do I/don't I take the meds every day. Right now, I am still getting my pain med script from my internist. I have just started seeing a new PM and she (as have the others before her) wants to start by re-inventing the wheel. They think addiction is a risk (which is funny because then in practically the same breath they tell ME not to be so concerned about getting addicted that I don't take enough meds!). Anyhow, I am determined not to abuse the fact that my internist has graciously continued to write these scripts for me, but they are only for enough to give me about 10 half-way human days per month. So for now, I pick the 10 days when I want to make it past 4 p.m. and on those days I start with the meds first thing in the morning. Even at that, it only gets me to about 8 p.m. I can logic that taking them daily would help that too, but until the PM sees it, I'm stuck.
Dilaudid is a good idea. I've been given that in the ER for migraine before (although it took them 3 doses before it kicked in...). Still, maybe the PM would consider that since she won't try the patches. Then I could just keep the weaker stuff for breakthrough. It's worth bringing up at least. I appreciate the idea!

mama2654
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 1/1/2008 9:36 AM (GMT -7)   
RyanD, My back pain started the same as you. Every 1-2 years I would do something that I couldnt even walk. I would spend the day in the ER, then get sent home with meds. X-Rays never showed anything. Only the MRI did, and since then I had a laminectomy and a diskogram that came back with positive results. I feel your pain.
Let us know when you talk to your dr.!
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