Hi
has anyone expereienced this or is familiar with it..
My pain med- methadone never worked well in that I couldn't sit long enough to get through a meal without severe pain and Im not able to sit with a cushion either (so I can"t drive) Ive been on the med for nine mos...I was better about 6 mos ago than now but not enough to say the drug was working
My dosage was up to 40 meth and then cause of constipation and the possibility of hyperalgesia I came down slowly. Now Im at 17.5 but lately the pain is beyond belief ..i could just scream its so bad!
I may go back up 1 increment to 20mg but the constipation seems worse at that level.
I also take hyrodromorphone dilaudid supps 12mg for over a year (started at 3mg which worked ok, then wore off and went up and up to finally 12mg which don't help as well as the low dose did a year ago ... I could actually sit a tiny bit at various times over the past year but there was no medical reason why and it wasn't often!
My pelvic doc suggested the hyperalgesia awhile back and suggested it was the methadone. ..(we both hate this drug).
the pain doc I see .. makes excuses every time I beg him to find another med for me.. He thinks meth is a great drug for neuropathic pain but hey if Im in agony, its not working!!
My thought is : could it be the dilaudid supps which I take twice daily causing the hyperalgesia instead? The pain doc stated this, but again he's guessing... and he's a methadone fan.
Could that be the case and how could I know which drug is doing this? Frankly the suppository is the only drug that seems to give a few minutes of relief... feels good when that coolness hits the area and I lie down etc..
i am waiting on a pain pump trial but have hit some snags /delays with the other pain doc who 'll be doing it..argggh!!
...Im hanging on by a thread.
Any thoughts on the hyperalgesiA. (I am looking for a new pain mgmt doc btw!)
Thanks!!
hyperalgesia?
Re: hyperalgesia?
Kathy, I think it's hard to say whether it's caused by methadone or due to CNS wind-up. I had hyperalgesia even though I was not on very many opioids. I think you are already aware of Cora's thread on suboxone (buprenorphine)?
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: hyperalgesia?
Thx Violet for your quick reply. I have heard of Coras thread but haven't read the whole thing. What is the heading I would type in order to find it.?
BTW how did your over come your hyperalgesia?
yes I think the CNS is in windup .. the question my in-effective docs can'' answer is how to immediately address this. Its been in in windup for much too long.. untreated pain for years..etc.
For this moment, I am trying to get thru the days and pls God, to find more responsive and knowledable pain docs.
Thanks for any info and for being responsive. It helps!
Best regards,
Kathy
BTW how did your over come your hyperalgesia?
yes I think the CNS is in windup .. the question my in-effective docs can'' answer is how to immediately address this. Its been in in windup for much too long.. untreated pain for years..etc.
For this moment, I am trying to get thru the days and pls God, to find more responsive and knowledable pain docs.
Thanks for any info and for being responsive. It helps!
Best regards,
Kathy
Re: hyperalgesia?
Just been looking for Cora's thread - found this, which I think is the start of the story, will look for more ...
Re: hyperalgesia?
thx everyone and Thx Calluna as always for being so kind,
Thx for finding Coras thread! I
I read it. It sure goes to show how different we all are. She used methodone quite successfully along with another med. and then had luck with suboxone as a painkiller and a drug which switched her off the methadone when she was ready.
The pain doc whom Im no longer working with, insisted basically that if the methadone didn't help relieve my pain, then the other meds out there wouldn't either!
He was willing to put me on something else, but said it wouldn't help.
I saw him for a few visits but he gave me no plan, no ideas, other than to stay on a drug that I feel may be hurting me. It sure didn't help much. If it did, I wouldn't be mostly bedridden!
He scared the heck out me with this hopeless opinion. I've seemmany folks on these boards and others with PN pain similar to mine,
anal/ rectal /perineal etc.. They re not on methadone but on other things ... and some of them do feel better! (ie they're functioning,living their lives ..)
I believe that after feeling pain for a long time the rectal pain (which has been around since Sept 2011.... (before then --sit bone pain and bladder urge) is CNS generated ... and the cycle must be broken..
My husband has been with me at each appmt. He is a very intelligent logical guy. He is like my second set of ears and eyes and it's great to have him there.
None of what this doc said made sense to him either .
I will meet with new pain docs as soon as possible..I have appmts set up with docs who apparently manage medicines.
Its been tough to find pain mgmt docs who manage meds as many of them simply do interventional procedures (blocks ).. Many of them seem to only have knowledge of spinal,back, neck (mainstream type pain).
This is a dilemma ...I know we are so different in how we react. But if any of you wise folks who know meds could weigh in
I'd appreciate your thoughts.. so confused
Thx folks
Kathy
Thx for finding Coras thread! I
I read it. It sure goes to show how different we all are. She used methodone quite successfully along with another med. and then had luck with suboxone as a painkiller and a drug which switched her off the methadone when she was ready.
The pain doc whom Im no longer working with, insisted basically that if the methadone didn't help relieve my pain, then the other meds out there wouldn't either!
He was willing to put me on something else, but said it wouldn't help.
I saw him for a few visits but he gave me no plan, no ideas, other than to stay on a drug that I feel may be hurting me. It sure didn't help much. If it did, I wouldn't be mostly bedridden!
He scared the heck out me with this hopeless opinion. I've seemmany folks on these boards and others with PN pain similar to mine,
anal/ rectal /perineal etc.. They re not on methadone but on other things ... and some of them do feel better! (ie they're functioning,living their lives ..)
I believe that after feeling pain for a long time the rectal pain (which has been around since Sept 2011.... (before then --sit bone pain and bladder urge) is CNS generated ... and the cycle must be broken..
My husband has been with me at each appmt. He is a very intelligent logical guy. He is like my second set of ears and eyes and it's great to have him there.
None of what this doc said made sense to him either .
I will meet with new pain docs as soon as possible..I have appmts set up with docs who apparently manage medicines.
Its been tough to find pain mgmt docs who manage meds as many of them simply do interventional procedures (blocks ).. Many of them seem to only have knowledge of spinal,back, neck (mainstream type pain).
This is a dilemma ...I know we are so different in how we react. But if any of you wise folks who know meds could weigh in
I'd appreciate your thoughts.. so confused
Thx folks
Kathy
Re: hyperalgesia?
Kathy - I'm just trying to remember - your story started with IC, did it not? And you've had an MRI with Hollis Potter.
You had pain when sitting - that was buttocks and ischial tuberosity pain, ah I am not spelling that again! it took me three tries! sitbone pain! - and right perineal pain - misaligned pelvis - and you've had lots of PT which didn't really help much. You react badly to quite a lot of meds, the bladder problems make things difficult, and you have to be careful not to make that worse. I think you had embolization of some varices near the nerve at some point, but unfortunately that didn't help. You've now got increased perineal pain and severe rectal/anal pain.
And you've been on methadone, which you don't like, and which isn't dealing with the pain, and has added the problem of constipation to the list.
Have I got that all roughly right? All round, a bad situation.
I think you need a sympathetic pain management consultant who specialises in pudendal nerve problems. I wish I could send you Dr Greenslade! Helen says that we need to clone him, I think she is right!
My thoughts.
Deal with the constipation, it is making you uncomfortable at the moment and you don't need that at all. Having that properly under control would help. I will write about that on the other thread.
Get some effective pain relief running. You were considering restarting Lyrica, I think this would be very sensible. This stuff should help. Have you been given dosage advice?
As soon as you can, think about stopping those Dilaudid suppositories which will be making the constipation worse. (If you still need something to relieve pain inside, there are lidocaine suppositories which are sold for haemorrhoid relief. These also do the trick, quite wonderfully. And this is from one who knows...
In fact, you might want to try them anyway. Local anaesthetic = glorious numbness. ) Definitely think about stopping the Dilaudid supps as the pain starts to come under control.
And in the meantime, leave the methadone as it is. Once you have effective pain relief with the Lyrica, you can starting thinking about taking the methadone down again.
But you can't be in this pain! It is about quality of life!
You had pain when sitting - that was buttocks and ischial tuberosity pain, ah I am not spelling that again! it took me three tries! sitbone pain! - and right perineal pain - misaligned pelvis - and you've had lots of PT which didn't really help much. You react badly to quite a lot of meds, the bladder problems make things difficult, and you have to be careful not to make that worse. I think you had embolization of some varices near the nerve at some point, but unfortunately that didn't help. You've now got increased perineal pain and severe rectal/anal pain.
And you've been on methadone, which you don't like, and which isn't dealing with the pain, and has added the problem of constipation to the list.
Have I got that all roughly right? All round, a bad situation.
I think you need a sympathetic pain management consultant who specialises in pudendal nerve problems. I wish I could send you Dr Greenslade! Helen says that we need to clone him, I think she is right!
My thoughts.
Deal with the constipation, it is making you uncomfortable at the moment and you don't need that at all. Having that properly under control would help. I will write about that on the other thread.
Get some effective pain relief running. You were considering restarting Lyrica, I think this would be very sensible. This stuff should help. Have you been given dosage advice?
As soon as you can, think about stopping those Dilaudid suppositories which will be making the constipation worse. (If you still need something to relieve pain inside, there are lidocaine suppositories which are sold for haemorrhoid relief. These also do the trick, quite wonderfully. And this is from one who knows...
In fact, you might want to try them anyway. Local anaesthetic = glorious numbness. ) Definitely think about stopping the Dilaudid supps as the pain starts to come under control. And in the meantime, leave the methadone as it is. Once you have effective pain relief with the Lyrica, you can starting thinking about taking the methadone down again.
But you can't be in this pain! It is about quality of life!
Re: hyperalgesia?
Hi Calluna
Thx so much for your thoughful suggestions.
Yes you really covered my whole history very well. You know it better than my docs..
I would also add as I'm sure you know, that all my symptoms have resulted in CNS wind-up ,that the pain meds need to focus on the most...the pain in the brain.
I just sent you a detailed reply but as I hit "submit", it made me sign on again, and the system lost my post! Arrgg!! This happens once in awhile to me when on this site....not sure why! Could be my computer. But I'll re-write it in shortened form.
Thx again for your thoughtulness! Have a nice evening
Kathy
Thx so much for your thoughful suggestions.
Yes you really covered my whole history very well. You know it better than my docs..
I would also add as I'm sure you know, that all my symptoms have resulted in CNS wind-up ,that the pain meds need to focus on the most...the pain in the brain.
I just sent you a detailed reply but as I hit "submit", it made me sign on again, and the system lost my post! Arrgg!! This happens once in awhile to me when on this site....not sure why! Could be my computer. But I'll re-write it in shortened form.
Thx again for your thoughtulness! Have a nice evening
Kathy
Re: hyperalgesia?
Hi Calluna
Hope you had a nice weekend, Glad to hear your pain is much better. Hope your strength and endurance keep increasing. When you have time can you tell me what your pain symptoms were?
Yes you have a great handle on my pain story. Thanks for giving it your attention. so kind of you. I would add as Im sure you know, that my pain is at this point CNS driven.. atfer years of fear/bracing and in-effective treatment ..the pain is in the brain,, so we are aiming at some aggressive treatments to break the pain cycle in the CNS.
Meanwhile the drugs I take should do the same.
I am working on the constipation.. better but still trying to maintain a balance.. I will mention more in that thread.
I agree wholeheartedly about getting the pain under control ..have been trying for a long time but it has been unsuccessful, partly due to the difficulty in finding a pain doc willing to sit down and give me a plan for medications.
If you don't mind I will PM you.
I do agree that Lyrica is the way to go.
Thank you again for taking the time! It is so appreciated.
Hope you had a nice weekend, Glad to hear your pain is much better. Hope your strength and endurance keep increasing. When you have time can you tell me what your pain symptoms were?
Yes you have a great handle on my pain story. Thanks for giving it your attention. so kind of you. I would add as Im sure you know, that my pain is at this point CNS driven.. atfer years of fear/bracing and in-effective treatment ..the pain is in the brain,, so we are aiming at some aggressive treatments to break the pain cycle in the CNS.
Meanwhile the drugs I take should do the same.
I am working on the constipation.. better but still trying to maintain a balance.. I will mention more in that thread.
I agree wholeheartedly about getting the pain under control ..have been trying for a long time but it has been unsuccessful, partly due to the difficulty in finding a pain doc willing to sit down and give me a plan for medications.
If you don't mind I will PM you.
I do agree that Lyrica is the way to go.
Thank you again for taking the time! It is so appreciated.
Re: hyperalgesia?
Good morning Kathy - ah, it is afternoon now! The time slips away...
I have just written a note on the thread about Lyrica. I do hope that you get some other responses there as well. I think it is very much worth giving it a shot, nothing to lose there.
CNS windup, yes. When I was on oxycodone, I was getting very scared about this too. It all seemed to be getting a bit out of control with more symptoms here and there, I was starting to get problems with my left arm as well and that was worrying me a lot. Medication that deals specifically with neuropathic pain seems to be more effective by far than opiates - at least, that's what I've found.
PM me yes, by all means. Never a problem with that.
What were my pain symptoms - ah yes. I have a history of POP and multiple POP surgeries, to cut a long story short. Finally I had a huge pelvic reconstruction surgery involving a lot of mesh, during which the pudendal nerve was unfortunately damaged in some way, I still don't know exactly how. I was initially numb in the left pudendal distribution, the feeling came back over 2-3 weeks as pain and has remained with me ever since to some degree or other. The only change has been that the right pudendal distribution has joined in, I'm told this is crosstalk between the nerves. I also have had foreign body feeling in rectum, this was extremely painful. And I've also had PGAD. BM is a major pain trigger. I usually wake with little or no pain, it gets worse during the day. It is always made worse by sitting, which I avoid completely except with my particular cushions.
I also have lots of problems with continence/constipation, but that's not a pain symptom, just 'a pain'.....
I had a big surgery with the lovely Mr Dixon where he took out lots of the mesh from the reconstruction and did a different surgery to hold all my bits inside - very successful at first, and the pain was much improved, but he couldn't access the nerve, he said it was 'completely embedded in scar tissue' and it wasn't safe to go any closer... PGAD did go away, and so did foreign body feeling, and pain was reduced overall, this was a brilliant result.
I then had to have a couple more small surgeries as further bits of mesh made their way partially out through the skin and needed to be removed, each time Mr D took out as much more as he could reach, unfortunately each time the pain got worse instead of better and now I'm pretty much back where I started, except that PGAD is still gone, and so is foreign body feeling, so that's good, in fact now I stop and think about it, that's wonderful!
All I'm left with is pain in the pudendal distribution, sometimes leftsided, sometimes rightsided, sometimes both. Heigh ho... never mind! This, we can deal with!
PM me if you want to chat. This should not be about me.
Back to hyperalgesia, which I have not got, and which I sincerely hope you have not got.....
I have just written a note on the thread about Lyrica. I do hope that you get some other responses there as well. I think it is very much worth giving it a shot, nothing to lose there.
CNS windup, yes. When I was on oxycodone, I was getting very scared about this too. It all seemed to be getting a bit out of control with more symptoms here and there, I was starting to get problems with my left arm as well and that was worrying me a lot. Medication that deals specifically with neuropathic pain seems to be more effective by far than opiates - at least, that's what I've found.
PM me yes, by all means. Never a problem with that.
What were my pain symptoms - ah yes. I have a history of POP and multiple POP surgeries, to cut a long story short. Finally I had a huge pelvic reconstruction surgery involving a lot of mesh, during which the pudendal nerve was unfortunately damaged in some way, I still don't know exactly how. I was initially numb in the left pudendal distribution, the feeling came back over 2-3 weeks as pain and has remained with me ever since to some degree or other. The only change has been that the right pudendal distribution has joined in, I'm told this is crosstalk between the nerves. I also have had foreign body feeling in rectum, this was extremely painful. And I've also had PGAD. BM is a major pain trigger. I usually wake with little or no pain, it gets worse during the day. It is always made worse by sitting, which I avoid completely except with my particular cushions.
I also have lots of problems with continence/constipation, but that's not a pain symptom, just 'a pain'.....
I had a big surgery with the lovely Mr Dixon where he took out lots of the mesh from the reconstruction and did a different surgery to hold all my bits inside - very successful at first, and the pain was much improved, but he couldn't access the nerve, he said it was 'completely embedded in scar tissue' and it wasn't safe to go any closer... PGAD did go away, and so did foreign body feeling, and pain was reduced overall, this was a brilliant result.
I then had to have a couple more small surgeries as further bits of mesh made their way partially out through the skin and needed to be removed, each time Mr D took out as much more as he could reach, unfortunately each time the pain got worse instead of better and now I'm pretty much back where I started, except that PGAD is still gone, and so is foreign body feeling, so that's good, in fact now I stop and think about it, that's wonderful!
All I'm left with is pain in the pudendal distribution, sometimes leftsided, sometimes rightsided, sometimes both. Heigh ho... never mind! This, we can deal with!
PM me if you want to chat. This should not be about me.
Back to hyperalgesia, which I have not got, and which I sincerely hope you have not got.....
Re: hyperalgesia?
Hi Calluna,
It sounds like you've been through quite a lot with surgeries. I assume POP is pelvic organ prolaspe?
It sounds like that your pain is somewhat better than before so that's great. I hope you can get it resolved completely... Lyrica certainly seems to be the drug they advise for neuropathic pain.. Im eager to get off my meds and onto to hopefully a Lyrica or gaba medicine.
I am completely confused as to what's happening with me... I' m thinking hyperalgesia due to the 9mos worth of methadone and over a years worth of dilaudid rectal supps..(the latter tho were always used as needed,,, so I skipped them on the rare days my butt felt better.
Lately tho, in the past 3 weeks the anal pain so bad, I can barely get through a day and have to spend most the time in bed. Im noticing that the throbbing is even happening when lying down; the anal rectal supps haven't helped much in ages (but the relief they offer has been less and less this past few days even).
So Im thinking either hyperalgesia or CNS windup or both... I also could point to stress due to the hunt for pain docs and some upcoming procedures Im looking forward to but apprehensive of..
I will keep my descriptions as simple as possible when meeting new pain docs ( this week) as long term pain in pudendal areas seems to scare these guys away.
I pray I will find the doc who will switch me off my meds to something else like Lyrica safely. nNo more opiods! I wish to God I was never put on Methadone.
Can one get hyperalgesia from a med that didn't help all that much? (I do think my meds helped a little, as 6 mos ago I wasn't in screaming pain as I am now, Tho I couldn't sit, or stand much, I could perch on special occasions with some pain. I was at about 30mg then... later went to 40 mg but constipation was intolerable so weaned down to approx 20mg...I never noticed significant relief for most part tho.
So honestly am not sure whether I have hyperalgesia, CNS or if the root cause of the pain (PN) or possible TC disease is worsening. I haven't done anything rash.. ie avoided sitting completely, been basically bedridden/with little exercise due to pain. Another factor could be the constipation cycle?
I pray the docs can help with this, as today has been the worst day yet.
I appreciate your replies! Have a great day tomorrow.
It sounds like you've been through quite a lot with surgeries. I assume POP is pelvic organ prolaspe?
It sounds like that your pain is somewhat better than before so that's great. I hope you can get it resolved completely... Lyrica certainly seems to be the drug they advise for neuropathic pain.. Im eager to get off my meds and onto to hopefully a Lyrica or gaba medicine.
I am completely confused as to what's happening with me... I' m thinking hyperalgesia due to the 9mos worth of methadone and over a years worth of dilaudid rectal supps..(the latter tho were always used as needed,,, so I skipped them on the rare days my butt felt better.
Lately tho, in the past 3 weeks the anal pain so bad, I can barely get through a day and have to spend most the time in bed. Im noticing that the throbbing is even happening when lying down; the anal rectal supps haven't helped much in ages (but the relief they offer has been less and less this past few days even).
So Im thinking either hyperalgesia or CNS windup or both... I also could point to stress due to the hunt for pain docs and some upcoming procedures Im looking forward to but apprehensive of..
I will keep my descriptions as simple as possible when meeting new pain docs ( this week) as long term pain in pudendal areas seems to scare these guys away.
I pray I will find the doc who will switch me off my meds to something else like Lyrica safely. nNo more opiods! I wish to God I was never put on Methadone.
Can one get hyperalgesia from a med that didn't help all that much? (I do think my meds helped a little, as 6 mos ago I wasn't in screaming pain as I am now, Tho I couldn't sit, or stand much, I could perch on special occasions with some pain. I was at about 30mg then... later went to 40 mg but constipation was intolerable so weaned down to approx 20mg...I never noticed significant relief for most part tho.
So honestly am not sure whether I have hyperalgesia, CNS or if the root cause of the pain (PN) or possible TC disease is worsening. I haven't done anything rash.. ie avoided sitting completely, been basically bedridden/with little exercise due to pain. Another factor could be the constipation cycle?
I pray the docs can help with this, as today has been the worst day yet.
I appreciate your replies! Have a great day tomorrow.