Upset and needing to vent!

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Forum Moderator

Date Joined Apr 2004
Total Posts : 23360
   Posted 4/29/2009 11:17 AM (GMT -6)   
I haven't posted on here in a while - why? No clue really.  I haven't posted much anywhere other then my moderated forums - not even much on them either.  But if anyone can understand the frustration I am feeling it is all of you.  I'm having a really bad day both physically and emotionally that cyber hugs would be very much appreciated right about now.
Let me recap - I have two bulging discs in my neck - one might be slightly herniated.  Last year I went thru a series of 3 epidural injections.  They worked rather well and I was more or less painfree for about 6 months (I still had a few bad days but not bad).  So then this year I had a new symptom that I've never had before.  I had massive nerve pain radiating down into my hands - it felt like I dipped my hands in boiling oil.  They were on fire, tingling and numb.  I didn't know what to do so I went to the ER.  Let's just say wasted trip!  They didn't know what to do for me because I am allergic to many pain meds and others I can't take due to my UC.  So they sent my on my way with Darvocet.  That did not help at all! 
So then I called my primary and she set me up for another series of epidural injections.  I've already had 2, I started to feel better until a couple of days ago when the burning, tingling and numb hands came back (this time I took Neurontin but boy do I HATE that drug - makes me loopy).  So now I am going in for another MRI next week to determine if the discs have gotten worse.  But what frustrates me more then anything is that I CAN NOT do anything or it sets off the spiral of pain from 1) the discs in my neck, 2) increasing arthritic problems in my hands and 3) I am still getting intense lower back spasms (think 9 on the pain scale) on occasion.
I just don't know what to do anymore!  I feel like crawling into a corner and crying but I can't do that because just the act of crawling will hurt my neck!  shakehead   I'm so sick and tired of seeing doctors, I am so sick and tired of being in pain and I am so sick and tired of no one having answers for me. mad
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE


Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 4/29/2009 12:00 PM (GMT -6) have a lot on your plate...(((((((((((((((((((((((((red))))))))))))))))))))))))))))))))))))))))...
Glad you came here to vent...scream, kick and yell cuz it sucks being in pain all the time...
Alas all I can offer is an ear and cyberhugs (((((((((((((((((((((((red)))))))))))))))))))))))))))
"The earth laughs in flowers"

Veteran Member

Date Joined Aug 2006
Total Posts : 9607
   Posted 4/29/2009 3:14 PM (GMT -6)   
Awe, Sherry lots and lots of soft hugz.........
Have you thought about seeing a pain management pyschologist, might help with the frustrations some...
just an idea I'd toss out, sure hope you get a low pain day and try a heating pad or ice...
more soft hugz...
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines


Veteran Member

Date Joined Jul 2007
Total Posts : 554
   Posted 4/29/2009 4:50 PM (GMT -6)   
i had the same thing, they switched me from neurontin to lyrica and it completely stopped the nerve pain. cymbalta has also helped as a triple for the pain from fibro, nerve pain and depression. maybe consider asking your dr about it or ask for some samples to see if it helps. the lyrica is like the neurontin, it will probably make you sleepy the first two weeks or so- thats what happened to me and the same for my friend who was on it as well- but the sleepiness goes away once you adjust to the med. its just getting used to it.
RX's: Oxycontin 80mg 2x's daily; Oxycodone 30mg 5xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed); Amitriptyline 25mg 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Abilify 5mgs at bedtime (depression); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil

Veteran Member

Date Joined Dec 2007
Total Posts : 1228
   Posted 4/29/2009 6:17 PM (GMT -6)   
Hi Red,
Sorry that you are having such a tough time right now. If the tingling is happening more often, it may be that you have herniated the worst disc or yet another one. Have you looked at any of the dermatomes out there? It can show you which disc it might be by where you have the tingling and burning pain. That is usually caused by some pressure/compression on the nerves. I haven't taken Neurontin this time around, I got better relief with Lyrica. You might want to try that if the loopiness is too much for you to deal with. Lyrica can cause the same side effects but it usually goes away within a week of starting it.
I wish that I could sweep away all of the pain here, for all of us......
I'm glad that you came here though to share what you are going through. Sometimes just having someone who understands and empathizes helps far more than anyone can think it does.
Hang in there. I hope that you get some relief soon.
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 4/29/2009 8:56 PM (GMT -6)   
I'm late doing my posting today but definitely wanted to send you a giant hug!


One thing I thought of was talking with your doctor about whether a RF (radiofrequency) might be helpful to you. Since you got some relief with the injections, it must mean they found the nerve causing the main problem, although it seems maybe you've had some chancges. Unfortunately our spines don't tend to stay static and the movement is ususally in a downward direction, even as we age if nothing else. So ask for more tests and ask about your options.

I do agree talking with a pain psychologist may help you through this time. I wish I could waive away all our pain!



Veteran Member

Date Joined Mar 2008
Total Posts : 2976
   Posted 4/29/2009 10:54 PM (GMT -6)   
Hi Sherry,

Boy, your last paragraph there sums up everything that I have been feeling lately in a nut shell. I too feel very helpless in my situation, am sick of all this CP stuff, and am incredibly frustrated because my docs still don't have any answers for me, yet my condition is progressing. I think that 1) not knowing and 2) feeling helpless, are the absolute WORST. Knowing what is wrong might not change anything, but it would at least provide justification and perhaps encourage our docs to work that much harder to find some treatment. I wish that I could do something more to help you! But I guess you'll have to suffice with prayers, hugs, and well wishes! ((((((((((((((Sherry)))))))))))))))))). We're here for you any time you need us!


Regular Member

Date Joined Feb 2009
Total Posts : 487
   Posted 4/29/2009 11:05 PM (GMT -6)   
Hi Sherry:

I'm sorry you are in so much pain and in limbo as to it's cause. I wanted to send another hug your way and tell you that I hope you get some answers and more importantly some relief soon!


Forum Moderator

Date Joined Jan 2007
Total Posts : 3452
   Posted 4/29/2009 11:10 PM (GMT -6)   

Hey Red,

I hate that darn nerve pain.  It is so awful.  I haven't found anything that works for it...let me know if you do!!  I hope you get some relief real soon.  What are your options for those discs?  Let us know how you are doing.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

Forum Moderator

Date Joined Apr 2004
Total Posts : 23360
   Posted 4/30/2009 6:52 AM (GMT -6)   
Thanks everyone. Those cyber hugs sure were appreciated. I am feeling better emotionally today - physically eh not so much.

I have been diagnosed with the bulging discs just these past few years. For the most part the epidural injections have helped but it seems they are losing their potency. But I will ask the doctor about my different options after I have the MRI. I do not have nerve pain all the time but I would say about maybe 60% of the time with only 3 horrible episodes of the intense hand pain. The other nerve pain that I get is the sharp shooting pain down my shoulder blades and down one arm or the other as well as it shotting upward on my neck. I have also lost some sensation on my neck where the discs are. I get headaches constantly too.

My neurologist tried getting me on Lyrica last year but my insurance denied it. Their reasoning is that it hasn't been sufficiently studied in neuropathies. Neurontin works well on the nerve pain - just don't like how it makes me feel. Like nothing is real and I'm walking in a dream. But I have been using a soft neck brace when I sleep, which helps a little but boy was it hard to get used to! I also have arthritis hand wraps to help retain heat all night to help keep the swelling down. It was sort of funny, getting all geared up last night - my husband said it looked like I was getting ready for battle! Sometimes it feels like it too!
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE


Veteran Member

Date Joined Apr 2009
Total Posts : 536
   Posted 4/30/2009 1:23 PM (GMT -6)   
Sherry, I am sorry that you are having so much pain. Nerve pain is horrible. Hopefully you wll get some good options on what will work for you and get you some relief soon. I will keep you in my thoughts.

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3602
   Posted 4/30/2009 5:41 PM (GMT -6)   
I know what you are going through I have it from my elbow down into my little to middle fingers, and from my adams apple up into the back of my head both on the left side, I am scheduled for a Cervical MRI 8:15 on the 8th of May. I have had C6/7 fused and I know C5/6 is bad, Thoes Epidurals only last about 3 weeks with me.

Anyway I have empathy for you Sherry! Personally I just keep hoping it is not surgery time again! I really don't want to go through that again! I also use the soft cervical collar especially when I get that white hot searing pain in my neck as it also cause me to start gagging which cause electric shocks and needle sticks across my chest. I know it is that nerve root being irritated, and the collar seems to stablize it! So if it also bothers you during the day, might want to try it then too!
I sure wish your well, you'll be in my prayers!
White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, 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

Veteran Member

Date Joined Sep 2008
Total Posts : 1670
   Posted 4/30/2009 8:13 PM (GMT -6)   
Hi Red, I can really relate to the sick of seeing drs statement!!! Especially when there's no magic cure at the end of them. I'm sorry you're in so much pain. It frustrates me endlessly that pain meds are the only option, dull the nerves, dull the senses, why can't someone remove the inflammation!!! I know its a silly thought, but wouldn't it be nice.
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