New Member with SCS - still having pain

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JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/9/2010 11:32 AM (GMT -7)   
This is my first time posting here. Guess I just need to vent. It is so draining dealing with being in constant pain. I have been through a lot of things in my life and always managed to deal with them and move on but this is different, I can't get the Drs. to listen to what I'm telling them, the neuro stimulator implant is not effective. Meds only take away the edge. Hate the thought of dealing with this the rest of my life (not planning anything stupid) I love my kids too much for that. Have to got see my PM Dr Thur. and it's a 2 hour drive each way, riding in the car is not good.So anyway I guess I'll keep trying to get better. Thanks for letting me get it off my chest.

 

 

 

Jkay I gave your posting a title so others will know what it is about.

Post Edited By Moderator (Stella Marie) : 3/9/2010 11:59:50 AM (GMT-7)


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/9/2010 11:58 AM (GMT -7)   
Welcome JKay,
 
I so sorry to hear about the pain that you are in.  You and I sound similar.  I was having chronic pain and started out with the nuerostimulator.  I found that the stimulator did an OK job of handle mild to moderate pain.  But where is came to severe chronic pain, it would only offer a "different" sensation.  The underline pain was still breaking thru the "electrical sensation".  I ended up having to get an Intrathecal pump implanted.  It was not until I have both devices did I had what I would call adequate to good pain control.
 
Have you talked to your PM what oral options you have.  Maybe you need an increase in you oral pain medications.
 
Welcome to Healing Well.  Please keep us posted.

Stella Marie 

Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atroph;  muscle spasms, muscle pain, neuropathy  & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – an  intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Meds - too many too list or even care about!

 

 



JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/9/2010 12:13 PM (GMT -7)   
Hi Stella, I'm taking lyrica and started Cymbalta the last month and it takes away the drop to my knees pain but I still can't get around well, I started a higher dose of the Cymbalta today so I'm hoping that will kick in soon. I will be talking to my PM about all this. your on here so you know where I'm coming from. Thanks for the support.
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/9/2010 12:28 PM (GMT -7)   
I am Cymbalta too.  I tried Lyrica, but had very little relief from it.  Both of the medications are used for nonspecific pain or neuropathies (pain, numbness, and tingling in the legs).  I noticed that you are not taking anything to address moderate plus pain.  Cymbalta in an antidepressant that can help with pain.  Lyrica is also a indirect pain medication, it can help with odd pain.  Have you talked with your doctor about something a little stronger for pain relief.  I can't imagine having pain so bad you need a neurostimulator, but the doctor not giving you anything for break thru pain.  Have you considered a second opinion with your pain management.  What does your PM doctor say about your situation and the residual pain you are experiencing?
 
Please keep us posted, because we care.

Stella Marie 

Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atroph;  muscle spasms, muscle pain, neuropathy  & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – an  intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Meds - too many too list or even care about!

 

 



bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/9/2010 12:32 PM (GMT -7)   
Hi JKay:

I just wanted to say hello and welcome you to HW. I'm sorry that we aren't meeting under better circumstances though - I hate to see another person having to deal with chronic pain. HW has been a great source of support, comfort, & understanding for me, and I hope that you will find it is the same for you. As much as our family and friends try to understand how we feel, it is just impossible for them to, and I know I get tired of trying to explain it, and they get tired of hearing about it. Here, we all truly understand how CP affects every single aspect of our lives.

I, too, have to travel 2 hours each way to see my pain management doctor. We just got 2 pain management doctors in my town, but they are not qualified to care for anyone with serious CP issues.

Take care,

Lorie

JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/9/2010 2:32 PM (GMT -7)   
Part of the med thing is me, I really don't want to be dependent on strong narcotics, I am going to discuss everything with my PM on Thur.
Hi Bluejet, thanks for the welcome. I have a wonderful and understanding husband but I don't want to keep burdening him with everything. And it is hard to explain, especially when they can't pinpoint the cause of the pain. I appreciate your support. I've been reading posts for a while and could see how everyone understands what we go through. So for now I'll suck it up and wait to see my PM on Thur. I'll let you know how I make out. Thanks again.
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/9/2010 6:21 PM (GMT -7)   
JKay,
I think it's time you asked your pm doctor to consider a pain medication, and ask about starting at a low dosage, as that might work good for you.
It should give you something to consider for your appointment...Good Luck to you and in what you chose to do...
(((((((((((((((((((((((((((((((((((((JKay))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/9/2010 9:43 PM (GMT -7)   
Hello JKay...Welcome.  I understand not wanting to be on narcotics....but sometimes its a necessary evil...I have been on them for over 10 years....and if I din't take them I would be in bed all day crying.. But if you can get by without them then do it.... I hate that you have to be here, but this is a great group of people....very smart and supportive.
 
We will be here if u need us....
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/9/2010 9:57 PM (GMT -7)   
Thanks to all for the support!!!
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/9/2010 10:10 PM (GMT -7)   
Hi JKay and welcome to our family!

You are amazing to be surviving this long with the pain you have. But you don't deserve to go any longer at that high a pain level. Stella Marie has such wonderful knowledge and is willing to share what she's tried. She's heads above me in that area. I do take narcotic medication for pain and don't like it one bit, but I'd rather have some quality to my life than live in misery all the time. Still, it's hard to look at that bottle of pills each day, I must admit.

At least when I come here and share it makes dealing with all of this so much easier. The folks here are amazing and so compassionate. No one else understands chronic pain like someone else who lives with it.

Warm hugs,
Chutzie
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 3/10/2010 4:09 AM (GMT -7)   
I too take narcotic pain meds on a daily basis, an extended release med for continuous relief plus a low dose instant release one for break through pain. No they don't take all the pain away but makes it more tolerable so I can lead a more normal life. When you have chronic pain you normally won't get the high feeling that you hear about with drug users.

Anyway, welcome to the forum and keep us posted on how your appt goes. Maybe it would help if you started keeping a pain journal to take with you to your appts. This would give the doctor better information as to when you are experiencing more pain and this may help him & you figure out something to help with these times.
---Jag---
 
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 3/10/2010 5:55 AM (GMT -7)   

Hi JKay,

Welcome to HW!  I agree with what everyone has posted.  I have been on pain medication for 6 yrs., like Jag says it doesn't take away all the pain but it makes it more tolerable.

I felt the same way as you about being on drugs BUT as my PMD said, the body needs relief from the constant CP. 

You don't need to suffer as you are, there are meds that will help and life will become livable again.

XXOO
Patti


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/10/2010 1:42 PM (GMT -7)   
Hi JKay,

I just want to add my welcome to the group! Welcome!

Skeye

JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/11/2010 9:36 PM (GMT -7)   
So I went to my PM today. I'm keeping the meds the same. Good news is I had the Stimulator rep do some tweaking on my Stim and I think after 9 months we may have gotten somewhere. It's working much better tonight, now I have to try doing some normal things to see how it will work in different areas. Tomorrow morning will be a true test since morning are the very worst. It will never give me complete relief but I'll take anything I can get. Thanks to you all for the encouragement.
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/11/2010 9:44 PM (GMT -7)   
Good luck with the neuro stim, sounds like it'll work for you...
Keep us posted on that and I will wish you well...
(((((((((((((((((((((((((((((((((((JKay))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/11/2010 9:52 PM (GMT -7)   
Thanks.
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 3/12/2010 12:03 AM (GMT -7)   
J-
Keeping my fingers crossed that the reprogramming does the trick. It took me 12 months of reprogramming to finally get it to a point where I got any relief.

But I also wanted to encourage you that even if you do need some pain meds for the short term, you don't have to be dependent on them forever. I'm assuming you don't have any issues with addiction. Barring that, it's very do-able to quit once things improve. I actually had to up my pain meds for a while after the implant. It was totally horrible. I was on 15 different meds -- everything from Lyrica to muscle relaxers to narcotic pain meds -- plus meds to treat the sleepiness, dizziness & nausea caused by those meds. But once we got the pain under control & got the SCS programmed right (I still have to go in for tune-ups at least once a year), the pain improved significantly. The cycle was broken and I was able to cut down to just the Lyrica & a small amount of one narcotic pain med a few days a week.

Right now I am working on cutting down the pain meds again after getting my low back treated (the SCS is for my neck/head/shoulder). It seemed so hard to cut back when I was in all the pain, but since November I have already cut the dose by nearly 2/3rds. My goal is to be down to an average of one dose a day by August. I used to try to rush everything, but I've learned that breaking the cycle of pain & then building up the right kind of strength & enough of it to keep the pain away takes a lot of time. So I'm taking the increases of strength exercises & cardio slowly and taking the decreases on the pain meds at the same rate.

Only you & your doctor can decide whether narcotic pain meds are right for you. I just wanted you to know that they don't necessarily mean a lifetime of pills. Sometimes they can be a bridge to get you to a point where the Lyrica-type meds and the SCS can take effect, and then you can get off them -- for months, for years or for good.

wishing you well,
frances

JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/12/2010 9:08 AM (GMT -7)   
Thanks for the support Frances.
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.

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