As Im now just 6 weeks post surgery Im wondering when should I stop taking my pain meds and more importantly how DO I actually stop. I have about 60% relief in my legs ie burning, stabbing, tingling pain is covered most of the time, especially when Im lying down. However, while Im walking I have to turn my stim up quite high, so I have a thumping feeling, but this is so that the sensation covers the pain in my back, although it sometimes 'hurts' my legs. Im still getting this heaviness that Ive had all along. EG while Im standing or walking around I get like I have a bag tied around my waist full of weights and its SO HEAVY. I feel at times as if Im just about to fall down with the weight. So the SCS isnt helping that at all. But overall Im more relaxed with the SCS.
So Im thinking, ok, well now I should stop my meds. So I was thinking do I just 'halve' the amount. So I take 2 x 50mg of Zydol three times daily, Would I be right in thinking , ok, then take 1 x 50 Zydol three times daily, and the same with my other meds??
I will contact my Dr's office, but was wondering how you coped with the reductions

Thanks

[Rrae]

Of course your Dr is the big boss in this, but I (still hoping!!) am thinking that I will start to notice I won't be reaching for the breakthru meds as often and/or, like you say, only use half as much and be able to get the full effect.....(tolerance decline).....

Let us know what your Dr advises on this k.! We are all on this learning curve and I like to hear the different professionals give their 2 cents.

I was hoping I'd be able to get away from the pain meds more than I have as of yet.......but considering I was at one point on the highest level of Fentanyl PLUS taking BT meds and all this combined barely kept me above water with the pain battle.......now I don't use the Fentanyl at all, but may just have to take certain meds indefinitely.
I think a big part of my issue right now is that I'm still pretty 'up there' as far as my tolerance, so if I were to go on a 'drug holiday' (quit for awhile), it would help lower my tolerance and I'd not have to take as much. I just can't handle withdrawal. It took quite an effort to safely taper off the Fentanyl under Dr care.
Patience is what I need.....and to excercise more, hoping it'll strengthen the muscles that had gone atrophisized (?) from being so inactive.
I'm finally getting back in to activities and I'm noticing (finally!) that I don't have to pay such a high physical price the next day.

You and me seem to have almost identical pain conditions......I think that's how I got confused in assuming we even had the same units!
"Nana" here is wanting to get in the best shape possible for the new little man coming into my life in 2 months!!!

[fionab]

I understand your questions about coming off pain meds. I, too, am wrestling with that issue. What doesn't help is that my surgeon who did the implants is having my PCP do pain mgmt. Unfortunately when I saw my PCP the other day, he was rather bothered by the fact that these implants haven't gotten rid of my pain 100% and started going on about how he never would have approved me getting them etc. etc. had he known I would still be in pain a month after surgery.

So, I had to explain to him, AGAIN, how the whole thing works (ie, get pain reduction but no guarantee will be 100%, the need for breakthrough meds.). He reluctantly agreed I could continue to take a dilaudid a day, if needed, but that he's still not too sure about this whole SCS thing. I told him that, for me, the jury will be out until about 6 months, what with post-surgery pain, giving the leads time to fully scar in, upcoming physical therapy etc.

What Rae said is a good idea and is what I'm tending to do...I'm watching myself not reach for the meds. quite so often. Also, trying to turn up the stimulation instead to see if that will get rid of the need of reaching for medication.

Unfortunately I'm like you in that if I turn it up too high it hurts more than helps. I was at grocery store yesterday and started having a bad muscle spasm so turned the lumbar one up and was buzzing so strongly in legs that it felt very weird to walk and was actually a little difficult to walk. So, right now, I'm not sure about turning it up to get rid of unwanted pain or if I should reach for a pain med.

Sounds like we're in the same boat...thankfully we both have one oar, so at least we won't be going around in circles

[Mark56]

I aksed my Physiatrist, a board certified, fellowship trained pain specialist regarding the wind down of meds. He dictated a schedule to wean me from meds, and I have followed it. This has also led to using greater intensities on my stim unit, but that is OK. I see my physiatrist this week [hopefully]. For a wrap up conversation, I think, since off of the pain meds now.

Hugs to all,
Mark56

Originally Posted by fionab

I understand your questions about coming off pain meds. I, too, am wrestling with that issue. What doesn't help is that my surgeon who did the implants is having my PCP do pain mgmt. Unfortunately when I saw my PCP the other day, he was rather bothered by the fact that these implants haven't gotten rid of my pain 100% and started going on about how he never would have approved me getting them etc. etc. had he known I would still be in pain a month after surgery.

So, I had to explain to him, AGAIN, how the whole thing works (ie, get pain reduction but no guarantee will be 100%, the need for breakthrough meds.). He reluctantly agreed I could continue to take a dilaudid a day, if needed, but that he's still not too sure about this whole SCS thing. I told him that, for me, the jury will be out until about 6 months, what with post-surgery pain, giving the leads time to fully scar in, upcoming physical therapy etc.

What Rae said is a good idea and is what I'm tending to do...I'm watching myself not reach for the meds. quite so often. Also, trying to turn up the stimulation instead to see if that will get rid of the need of reaching for medication.

Unfortunately I'm like you in that if I turn it up too high it hurts more than helps. I was at grocery store yesterday and started having a bad muscle spasm so turned the lumbar one up and was buzzing so strongly in legs that it felt very weird to walk and was actually a little difficult to walk. So, right now, I'm not sure about turning it up to get rid of unwanted pain or if I should reach for a pain med.

Sounds like we're in the same boat...thankfully we both have one oar, so at least we won't be going around in circles

I know what you mean Fiona when you say that you find it difficult to walk. When I have mine up high I get the feeling in my legs similiar to the one that you would get after doing some walking on the treadmillthat feeling of nearly 'floating'. Its very weird and not very comfortable, so yes I would much rather take the meds than put up with the thumping and floating feeling. However, so far I havent dropped my meds because Im afraid of the consequences, but I know I have to at some stage, otherwise I wont know if this SCS is actually doing anything. I will say though that last night I had to recharge my battery and turned my stim off for the duration. Well the burning I had in my legs was unbelieveable. It was as bad as usual, but that gave me good hope that the SCS IS actually covering that burning when its off. I just need to sort out my lumbar region and try to get a good balance without all the thumping

RAE not long now til you will be a 'nana' too. I bet your so excited and naturally you want to be able to spend as much time as you can with this new little being. My granddaughter was here over the weekend and she is progressing superbly. She is now 10 weeks old and is making those lovely sounds. Im conscious of the fact that I shouldnt carry heavy objects so she is getting plenty of cuddles

Spoke with my Consultant today about my meds and how I am coping. I told him that I do get some relief in my legs but I find the stim is quite sore when I have it turned up high. But as he said thats because I have to try to cover from my lumbar region to my toes and in order to do that I do need to have some of the settings at high. In relation to my meds he told me to continue for now. As I told him that Im still getting that heaviness and achiness in my lower back. Yesterday my daughter and myself were babysitting my granddaughter So we decided to go for a walk, which took us over to our local park. We did some walking and decided then we should head to the local shop. However, after being in the shop etc when we walked out, the heavens just opened. We had to stay at the shops for 3/4 hourbecause we had no jackets etc........so by the time we could eventually get home, which was over an hour and a half later, I was just pooped. My back was just 'killing' me and I thought I would never get to lie down. Thats what my problem is with the stim, its not helping me that way. But yes in my legs
So my Dr explained that I need to give it more time, as the healing process is quite slow and if I feel that I need the meds to take them. Then when I go to see my rep again my Dr will be there too so I can speak with him then and we will review the meds then. He said that its not 100% guaranteed that the stim would take all my pain, which I knew in advance anyway. I told him Id say Ive about 50-60% improvement, which by my standards is great too

[Mark56]

Hi Jackie- I have found that the whole deal of healing from this surgery and the withdrawal is a time consuming, and sort of frustrating situation since I want to be able to do more and do it now. It takes time. It just does.

Be kind to Jackie,
Mark56

[fionab]

I know what you mean, Jackie. I haven't been on here for a few days because I've been having some problems with both lumbar and cervical areas.

First, somehow I got my right shoulder really hurting. I think I tried a different cervical program and it really got things hurting pretty bad...almost like the old days when I'd get a bad spasm in my shoulder blade that would take several weeks to go away, gradually. I went back to my former program and am now having to figure out what strength to have it on so I get pain relief while allowing sore shoulder to calm down.

Secondly, I'm having some difficulties with lumbar area. I'm hoping this is just a "you need your remote reprogrammed" thingy. I'm like you in that I really would like coverage from lower back to feet, but am wondering if the increased stimulation that this requires is helpful or actually causing problems. To get the pain in my lower back and hips and down to my feet covered it's causing the muscles in the upper front of my legs to get really tight and sore. So I back it down to where those muscles feel better and, wham, I start feeling it in my back and hips again, and when I get up from having been sitting for a while, I look like an old lady walking for the first few minutes.

My rep. also told me about the needing to have it higher for coverage from low back to feet so I'm a little nervous that maybe this is as good as it gets . But, then I try to console myself that I am only 5 weeks post surgery and was told that things would change as the healing took place etc. So, hopefully for both of us this is the reason for the changes or not-ideal coverage we're experiencing.

I agree that when I turn the units off that the pain comes back so it is helping...hopefully I haven't allowed my expectations to become unrealistic as I so want to get my life back.

[Mark56]

Just give it time, gee, my surgery was 29 June, and I am still in the healing phase, what with the fatigue, the withdrawal from meds and the like. You are five weeks out from surgery and still getting accustomed to using your unit..... Give yourself time.

z
Mark56

Originally Posted by fionab

I know what you mean, Jackie. I haven't been on here for a few days because I've been having some problems with both lumbar and cervical areas.

First, somehow I got my right shoulder really hurting. I think I tried a different cervical program and it really got things hurting pretty bad...almost like the old days when I'd get a bad spasm in my shoulder blade that would take several weeks to go away, gradually. I went back to my former program and am now having to figure out what strength to have it on so I get pain relief while allowing sore shoulder to calm down.

Secondly, I'm having some difficulties with lumbar area. I'm hoping this is just a "you need your remote reprogrammed" thingy. I'm like you in that I really would like coverage from lower back to feet, but am wondering if the increased stimulation that this requires is helpful or actually causing problems. To get the pain in my lower back and hips and down to my feet covered it's causing the muscles in the upper front of my legs to get really tight and sore. So I back it down to where those muscles feel better and, wham, I start feeling it in my back and hips again, and when I get up from having been sitting for a while, I look like an old lady walking for the first few minutes.

My rep. also told me about the needing to have it higher for coverage from low back to feet so I'm a little nervous that maybe this is as good as it gets . But, then I try to console myself that I am only 5 weeks post surgery and was told that things would change as the healing took place etc. So, hopefully for both of us this is the reason for the changes or not-ideal coverage we're experiencing.

I agree that when I turn the units off that the pain comes back so it is helping...hopefully I haven't allowed my expectations to become unrealistic as I so want to get my life back.

You Know Fiona reading your post was so similiar to how I feel its amazing. I often think IM THE ONLY one who knows whats happening. Sometimes Ive put the stim up so high that I feel as if someone is holding me by the hips and their grip is getting tighter and tighter. Man do I have to turn it down. Yes I know what you mean when you think, is this is??? is that what I am going to be about....Im now 7 weeks from surgery. I do feel well in myself at times and then of course 'forget' that Im still in the recovery process.....but life has to go on regardless. It doesnt stop just because Im having some pain and need to get it sorted.
So Im hoping we are 'early days' As Marks said he is out form surgery since end of June....and still recovering

PATIENCE, PATIENCE, PATIENCE