Intolerable Pain

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t6t7c
New Member


Date Joined Dec 2011
Total Posts : 13
   Posted 3/21/2012 5:57 PM (GMT -6)   
smhair Hello All you wonderful and caring people! Is there anyone out there who has had EXTREME burning sensations below an SC injury? I take Max. doses of Baclofen, Neurontin and Tramadol and they do not touch my pain when it gets bad, and it is INTOLERABLE now. Thank you all so much!

stingray
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 3/21/2012 7:25 PM (GMT -6)   
Hi t6t7c
Sorry to hear your in a lot of pain. I had a back fusion done a few years ago and do get a burning sensation occasionally. They fixed one problem but created alot more. It basically left me with chronic pain. I take oxycodone and oxyneo for pain. I find the oxycodone helps best for pain. Sounds like your problem is very much nerve related. Have you tried any injections ? They work great for some people. I have tried them quite a few times but so far haven't had any luck with them. I know some people take Gavinpentine ( sorry pretty sure that's not the correct spelling) for nerve pain. Anyway I'm sorry I couldn't be of much help. I wish you all the best. hang in there.
Stingray
Chronic Back Pain, Anxiety, A little Depression, Left foot problems...foot growing in length and big toe growing out sideways, Osteoporosis,11 surgeries total..right foot twice, right knee 3 times, right elbow, throat/neck, spinal fusion, left elbow, left knee, currently deciding on whether to have surgery on left foot.
Meds: Oxycodone, Oxycontin, Clonazapam
Birthday July 18th

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 3/21/2012 8:22 PM (GMT -6)   
I have that type of pain occasionally with all of the back problems I have...Baclofen usually helps mine, I take 40mg/day..what is your dosage? Have you ever tried Lyrica? That helps my nerve pain as well. I hope you get some relief soon.

Stingray- Gabapentin is the generic form of neurontin. ;)
Current: DDD L4-S1, Arthritis L4-S1, Facet Syndrome, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. In past 6 months have had epidurals, facet blocks and radiofrequency ablation.
Past: Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome. 3 laparoscopies, 2 cystoscopies, total hysterectomy, appendix & gallbladder removal.

t6t7c
New Member


Date Joined Dec 2011
Total Posts : 13
   Posted 3/22/2012 9:33 PM (GMT -6)   
Thank you stingray and fireflyhillary.
I should have been a little clearer on my issues, I just assumed we had some SC injury members in here somewhere! I take 800 mg of Baclofen, 2400 mg of Neurontin, 250 mg of Tramadol, 40 mg of Crestor and 10-20 mg of Hydrocodone as needed. I take the nuerontin to help with my frontal lobe brain damage, it helps with my speech and impulse control.
The Tramadol helps with the pain I have from a c4/c5 fracture and the Crestor for cholesterol levels in the low 300's.
I am told that I am maxed out on the Baclofen. This is one that I could/would not live without it. It dulls my SCI phantom pains most of the time, the one's below my injury level. I can always feel them (cutting and burning sensations) but they are tolerable, however, every 3-4 days, I have 10-16 hours of extreme pain.
I have a very high tolerance for pain, but when it starts, I can not be around any of my family members, I have no patience and zero concentration on anything, I am so irritable I can hardly stand my self. It feels exactly like someone is cutting me across the stomach, right to left, every 40 to 70 seconds and just below my injury level, t6/t7.
I also have intolerable burning in my buttocks, groin, thigh's, legs and feet. It feels just like I am sitting in a tub of hot water, water too hot to sit in.
I take the Hydrocodone to ease the pain I have from my t4/t5 vertebra, just above my my injury level, where my feeling starts and above the shattered t6/t7 where they attached 2 large Titanium rods. It also helps my neck pain and I also use it when the cutting and burning sensations (SCI phantom pains) start, it does not touch that pain but it helps with the lip pain I get from biting them all day! I know there are better ways to deal with this type of severe pain, besides biting my lips, ringing my hands and abusing pain med's., I just need to hear about them!

I thank God and all of you who continue to work so hard to make this site what it is, a safe haven for all of us who are hurting!

Post Edited (t6t7c) : 3/25/2012 12:52:42 AM (GMT-6)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 3/23/2012 10:53 AM (GMT -6)   
a lot of us here also seek out help with counseling as we do have days like yours...Maybe get into your
doctor and let him or her know that your medicines don't help, maybe a switch in medicines might, maybe a moist heating
pad might work better than getting a scalding bath...Moist heating pads do have auto turn off..might help...
Other will come by with better advise...maybe read thru older postings here...also the chat rooms here might help...
Hope you can get some relief from your pain soon....(maybe asking your doctor for a switching out the tramadol for Lyrica to see if that
might help)...many Prayers to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

t6t7c
New Member


Date Joined Dec 2011
Total Posts : 13
   Posted 3/23/2012 6:56 PM (GMT -6)   
Chartreux. I have tried all of your suggestions, with the exception of the heating pad, only because I have no real feeling at all below the chest. My Doctor says my only alternative is to start taking the stronger drugs, like Oxycontin and morphine. I know a few people taking these meds. and I just can't go that route. I can't live my life in a fog like that and the addiction issue scares the hell out of me! Thanks for reading and responding.
t6/t7 Complete Paraplegic, Burst Fractures to t6/t7. Thoracic Bridging surgery to stabilize my spine , broken c4/c5 and Frontal Lobe Brain Damage. I suffer from severe, sometimes intolerable pain below my injury level.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16404
   Posted 3/24/2012 10:50 AM (GMT -6)   
Hello t6t7c and welcome to the chronic pain forum. As usual I am a little later getting around to saying hello to everyone. That seems to be the story of my life sometimes, lol. I am glad that you found us, but very sorry you have to be here. Although, I know you are wanting to connect with other SC patients and we do not have any here at the forum, one thing all of us here do have and that chronic pain for whatever reason. Every person here has a story to tell as to what brought them to this forum.

It sounds like you really have an awful lot of nerve pain which can be a horrendous monster all on its own. Are you by chance seeing a pain mgt dr or a physical medicine dr? You said you are on Neurotin and it helps some, has your drs ever tried adding Lyrica to the Neurotin? We have had some people that were put on both and it worked much better with the two combined.

I understand your thoughts about not wanting to be on strong pain medication, no one ever wants to be on pain medication of any kind if you were to ask them. All of us would have laughed in someones face if they would have said we would end up as we are and on the medications that we are too. However, you are on the low end of pain medication and some where in the mix of all of this quality life issues are a big part of the picture.

There are many studies that prove chronic pain patients rarely ever become addicted to the pain medication. It is something like 1%. Now, our bodies can become use to a medication and require an increase of the drug or a change, but that can happen with any medication taken for a long period of time. Most patients are able to be maintained for long time frames before they need an increase or a change. You mentioned some people you know that were on narcotics and they acted like they were in a fog, most likely they are on a dose that is too high and it should be decreased. I have a pain pump implanted and I am on a fairly hefty dose of Dilaudid and Fentanyl and I am not the least bit in a fog. I am able to drive a car and function as before. I have better pain control than I have ever had and my quality of life is so much better. Before the pump life was rotten and so was my mood. I think its a shame for anyone to suffer after seeing what the correct medication can do for a person. Maybe you can do some research on addiction in chronic pain patients. Addiction really falls under the realm of a person obtaining a drug illegally and for illegal purposes.

Anyway, I wanted to pop on and tell you welcome aboard. Take care....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 3/24/2012 11:17 AM (GMT -6)   
Hello t6t7c!

I'm a little late greeting you as well! Anyways!…Welcome!

I agree with Straydog here, and was thinking you might ask your Dr about the combination of the Gabapentin, and maybe Cymbalta or the Lyrica. Generally they will not mix two nerve med's, but some Dr's do, and have good success with them that way.

I also see you are on a statin med (Crestor)….I also used to take it, and found that it caused joint pain. Do a little research on this, and you may find that it could be part of some of your pain issues…maybe not a lot…but like I said it could be a part of it. There is an OTC supplement you can take to help offset this joint pain caused by the intake of the statins…called Co-Q-10….look that up as well, and I think you will find it is recommended when taking Statin med's.

As fars as taking pain med's….again Straydog gave you some good advice…we consider ourselves Dependent not addicted…however….I think your worry is the withdrawals one may suffer if you ever have to come off of them. If you are seeing a good PM…they have med's to help with that problem….and or they will wean you off slowly.

If you are a longterm CP patient…then you may want to consider a good pain management program. I see you are on Hydrocodone….and there are many other options out there for you. You may want to consider some of the homeopathic OTC treatments as well…"Curcumin"..not sure of the spelling…but if I'm close here it should come up on a web search for you. Also…look at some of the food diets that help with inflammation, as these may help a little as well.

You will find that this is a great forum for discussing CP issues. We all suffer here, and understand well, the difficulties of living in constant 24/7 pain.

Again, Welcome, and enjoy the forum!

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Post Edited (Screaming Eagle) : 3/24/2012 11:17:49 AM (GMT-6)


t6t7c
New Member


Date Joined Dec 2011
Total Posts : 13
   Posted 3/24/2012 12:20 PM (GMT -6)   
Thank you both.

Post Edited (t6t7c) : 3/24/2012 11:25:37 AM (GMT-6)


No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/24/2012 11:42 PM (GMT -6)   
T6t7c,

Welcome and I'm sorry you had to find us... I understand where you are at, because I'm right beside you with pain that goes far beyond the 1-10 level doctors love to use.  I'm going to warn and apologize to everyone, because I've written a lot!  I am going to split it into several smaller posts.  

I injured my lumbar, thoracic and cervical at work.  I have sciatic pain going into my left leg causing pain and weakness.  I have 4 discs in my lumbar section that are messed up.  I have 3 more herniated discs in my thoracic and 2+ discs in my cervical that are bad.

The pain in the middle of my back is incredible, but fortunately not constant.  As long as I keep moving, switching between sitting, standing and walking I can mostly avoid the thoracic pain.  Surgeons rarely operate on these discs, since the rib cage is in their way and it's also added support so most people don't suffer like I do.

Post Edited (What's done is DONE...) : 3/24/2012 10:59:05 PM (GMT-6)


No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/24/2012 11:45 PM (GMT -6)   
Last year in July I had a 2-level fusion of my C5/C6, C6/C7 to help alleviate nerve pain that shoots down my arms into my hands and fingers where the last three fingers went numb.  Eight months later the pain has intensified and the numbness has spread to my entire hands!  I just had a CT Scan of my cervical, which revealed that my fusion failed.  I see my orthopedic surgeon Monday to discuss my options?  It doesn't help that this is a worker's comp. case still in litigation.  I won my case, but the same day I found out my fusion failed I learned that my former employers ( they fired me last June) have appealed the decision.

Anyways, the pain is mostly in my forearms where it then shoots into my hands and then they become numb.  I often wake up with numb hands!  Oh, did I not mention my wife is Deaf and we use sign language to communicate with one another... When the pain flares up I can't talk with my wife! The pain is so bad I can't even lift them up.  

The pain feels like someone took a dull butter knife and stabbed the center of my forearms and as I hang on them the knife rips thru my flesh and muscles until it stops at my wrists and the pain continues through my hands/fingers.  I keep imagining myself handing by two knives on a door, like in the horror movies.  It's the best way to describe the pain.

Post Edited (What's done is DONE...) : 3/24/2012 10:59:27 PM (GMT-6)


No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/24/2012 11:46 PM (GMT -6)   
I was set to have a 4-level fusion of my lumbar last September, but my health insurance denied the surgery.  When I learned I won my case I thought, good now I can finally have the surgery and get on with my life. Nope, I now have to wait until I've won my appeal.  This can take eight months to possible over a year before my case is reviewed.  

I've tried everything to help releave my pain before I finally had my cervical surgery.  Same goes for my lumbar.  I have had epidural injections, other injections, physical therapy, tens unit, dry needleing therapy...etc.  I've taken just about every narcotic and non-narcotic medicine with minimal relief.  I hate the side effects...dazed, confused, poor memory, constipation, erectile dysfunction (ED), the list goes on.  Need I say more?

I hate taking the narcotics and I also had a healthy fear of addiction.  In fact, I've even quit one strong narcotic cold turkey over the holidays...worse Christmas ever!  I do not recommend doing this...NEVER, EVER QUIT YOUR MEDS. COLD TURKEY!  The withdrawals were the worst, I've never felt sicker and as helpless.  Another time I became sick and throwing up; I couldn't even keep water in me.  Therefore, I could not take my oral meds and ended up in the hospital dehydrated and suffering withdrawals. My wife was an emotional mess, because she couldn't do anything to help, except being with me for support.  Every time I think I've suffered too much I keep thinking what I've put my wife through.  It makes me even more depressed, but I'm taking meds for that too!

Post Edited (What's done is DONE...) : 3/24/2012 11:04:37 PM (GMT-6)


No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/24/2012 11:55 PM (GMT -6)   
I decided to look for alternatives to taking pain meds.  I ended up getting a Intrathecal Drug Pump Implant.  It is a pump about the size of a hockey puck that delivers morphine directly to my brain through a catheter that's been implanted in my spinal column up to my T1 where it then gots to my spinal cord and brain.  

Anyways, I'm still adjusting my dosage, but it's startng to work for me.  It won't stop the nasty flare ups and the intense pain all the time, but it does help.  The side effects are still present, but to a lesser and sometimes more tolerable level.

FYI:  I've also considered a Peripheral Nerve Stimulator (PNS) for my Thoracic pain.  It's like a tens unit, but the pads are implanted under your skin and cover axial (up & down) pain.  It's 'off label' and therefore not FDA approved, so most health insurances won't pay for it.  Of course, I've also considered the other Spinal Cord  Stimulator (SCS), but it wouldn't help my lumbar pain, just my sciatic nerve pain.

These are my suggestions as possible aids in helping to lessen your pain.  I'm not a doctor, I just sound like one, because I'm always around them! LOL

*Do a search for "drug pump" here on healingwell and you can see my posts detailing my surgeries.  

The End...Seriously...

Post Edited (What's done is DONE...) : 3/24/2012 10:58:23 PM (GMT-6)


No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/25/2012 12:11 AM (GMT -6)   
SE,
Where are you? Your editing skills are fast... Man, I'm just being honest. It's the best way to explain my pain. Do you understand that level of pain, I'm sure you do. Anyways, My intention is simply to help other like minded suffering souls. If I can help just one other person, then I know why my "injury" happened...it was meant to be. I have to believe that there is a purpose to all this pain and suffering, if not to help others as I did at my former job.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 3/25/2012 12:44 AM (GMT -6)   
Hello Charles!

…well I don't know how fast I am…or that maybe I just happen to check the forum at about the same time you posted. We Moderators tend to check it on a regular bases, and while I was doing so I happen to read the post here….another habit we mod's happen to do! smilewinkgrin

You know!….I do understand those feelings…and many of here do…and have been down that road many times. However, there are a set of rules in place here for the forums and we enforce them within reason for the Admin. On occasion we do see discussions like this, and they may be brief in a post….however yours went into a two sentence explanation and was rather graphic.

We all hurt, and at times many of us have been at that 8-10 pain level. We even have members who live in a constant high pain level, who receive no relief from pain med's at all. I'm not here to compare, nor is anyone else here to compare pain levels…but I can assure you that many of our members are in serious pain and have multiple health conditions of very serious nature's.

I have no problem with a member posting a reply in order to help a fellow member, but discussion of suicide will not be permitted here on the forums. Please read our forum rules…so that you can get a good understanding of them. We are compassionate here and do understand Chronic Pain and the emotions that sometimes accompany it. If needed there are professional counselors that can help with this, and I suggest anyone who suffers from this type of thinking,... to seek one out.

….also, I have provided a pain scale here for you to view. www.wemsi.org/painscale.html ……I am not familiar with the pain scale your using that is above a level 10.

SE
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Post Edited (Screaming Eagle) : 3/25/2012 1:13:19 AM (GMT-6)


No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/25/2012 2:09 PM (GMT -6)   
Hummmmmmmmmmm, hummmmmmmm ???

SE, you misunderstood, it happens.

Cheers!

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/25/2012 2:12 PM (GMT -6)   
T6t7c, Hey buddy I hope I was able to help. I completely understand where you are coming from. Feel free to email me.

Cheers!

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 3/25/2012 2:13 PM (GMT -6)   
…well I was not the only one that misunderstood it….as I received two emails about it late last night. Reguardless…please understand and follow the rules.

..we do appreciate the support and are sympathetic to your pain and suffering. Thanks!

SE
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/25/2012 2:33 PM (GMT -6)   
SE,

Thank you.

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/27/2012 10:36 PM (GMT -6)   
Finally, my new nerve pain meds seem to be helping me! I had a nice walk today with little pain. Of course I had to wear my back brace and use my cane, but it sure felt good to get ut of the house.

Thanks for all the emails, and support, as I said I just want to help others in any way I can. I'm always raving about this website and suggest my doctors and pharmacy spread the good word!

Cheers!

Charles

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 3/27/2012 11:51 PM (GMT -6)   
Charles,

I don't know if we've had the chance to talk or not - but, regardless, I'm happy to hear that your nerve meds are helping! I bet it did feel good to get out of the house.

We are glad that you are here..... Take good care....

--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 3/28/2012 12:12 AM (GMT -6)   
Thanks Mom. I'm afraid to allow myself to feel good, because it seems not to always work out. That being said, I'd rather share this happy moment and not worry too much about something I have no control over. Tmw I will see my Orthopedic Surgeon to discuss what to do with the fusion of my neck that didn't work.

It's so crazy, I can't afford to see him, but I can't go see another doctor either! I just hope I can win my appeal fast and put that mess behind me.

One day at a time...

Cheers!
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