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Crohn's Disease Forum » General IBD Discussion » Visceral hyperalgesia and pain relief


02-27-2017, 06:09 PM   #1
HappyDiver
 
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Visceral hyperalgesia and pain relief

Hey all! Apologies for starting a new thread if there's a more appropriate one - I did scour the forum for a bit but couldn't quite find what I was looking for, so here 'tis.

I'm still chasing a final diagnosis (although with 20 years of perianal abscess, carbohydrate malabsorption and FC of 376 my very supportive G.I. is slowly coming around to my "I think I have isolated small bowel Crohn's" way of thinking), but over the last eighteen months what was once episodic pain has moved to chronic, and now I get burning cramping pain from normal BMs (I do have normal BMs sometimes, otherwise it's all urgency or constipation).

I had scripts for Panadeine Forte (500mg paracetamol - that's acetominophen to some of you if you don't know, but as chronic illness folks we are generally down with the lingo - and 30mg codeine per tablet). This was perfectly sensible when my pain was episodic, but I felt horrible over the Xmas/New Year break and was just managing to stay under "recommended max dose" by force of will (no symptoms of chemical dependency or addiction. I have a parent with a substance abuse issue so I am very careful about keeping an eye on that, at the same time I do not think sitting around in agony when I have work to do is a sensible approach).

I would even take them before running because running changes blood flow to the gut and I would get horrendous cramping pain that would force me to stop (even if I run fasted). I do actually have to work out more or less constantly because I have hypermobility syndrome - to simplify, I work out so I don't fall over. This is really hard because sometimes the IBD wants me to rest, but my joints need me to lift weights.

Anyway, I finally went to see a pain specialist because "painkiller math" was doing my head in. I would get bad pain, and sit there trying to decide if I should tough it out, or take pain relief, and how much to take, and if I waited would it go away (sometimes it did!) or would it get super bad (sometimes it REALLY did), and did I need to drive, or concentrate, and when did I need to do those things... oh the hours lost.

I was really nervous about it, but after asking me a lot of questions about the progression of the pain and the types of pain and lightly palpating my abdomen she said that it sounded like a pretty classic case of visceral hyperalgesia and that this was quite common in Crohnies.

As she explained it to me (I'm in biological research by trade, but as a geneticist and marine biologist, my knowledge of neuroscience hovers somewhere close to absolute zero), my guts have been in pain for so long that my spine has basically just been taught to tell me I'm in pain and fire those nerves, regardless of whether the inflammation is actually flaring up at the time. Which means that *sometimes* the pain will be related to inflammation and sometimes it's just my spine being a panic merchant.

I am now on a very low dose of Lyrica (pregabalin) which we will very slowly increase (to try to avoid side effects). The plan is to calm down my central nervous system so that it only gives me pain signals when there is actually a good reason to do so.

Anyway, there are a couple of reasons I'm telling this story. One of them is that the side effects are brain fog and weight gain. I have certainly been much heavier than I am, and because of the hypermobility syndrome I know that this is not good for my poor bendy wobbly joints! I need to reduce the mass load on those, not increase it. Brain fog is also a part of life when you've got pain and fatigue issues, but at the same time, I'm a scientist - my jobs are research, problem solving and writing, and I need to be able to concentrate to do that.

Mind you, severe pain is not good for concentration either!

So I was writing to ask:
1) I'm told visceral hyperalgesia is common in CD folks. Are there many of you out there? Do you have stories to tell? How did you manage it?

2) anyone else on Lyrica? (or Gabapentin, or Endep/Allegra, my other two options) How did it work for you? Did you get side effects? Did you find that it helped calm down your CNS so that your pain was less chronic and more episodic?

Hope you're all doing well and the illness is not treating you too badly today!

cheers.
02-27-2017, 06:29 PM   #2
HappyDiver
 
Join Date: Aug 2016
Location: Victoria, Australia
Ah - forgot to mention. I had my first dose last night (25mg - tiny) and woke up this morning feeling like DEATH. Achey, exhausted, zombie-fied. It's like the first day of my period. Or a hangover.

Thing is, this COULD be because a possum raced across our roof and woke up the dogs, who objected loudly to this marsupial interloper, and then I had trouble getting back to sleep.

Or it could be the Lyrica. No way to know at this point!
02-27-2017, 06:44 PM   #3
ronroush7
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Hi. You mentioned Gabapentin. I am on it for neuropathy in my left leg. It doesn't do away with pain completely but it is not nearly as bad as before the Gabapentin.
02-28-2017, 10:13 AM   #4
Jabee
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Hi HappyDiver:

After my last flare a year ago I was in severe, round the clock pain. My GP (GI won't prescribe for pain) put me on MS Contin and Percocet. I gradually reduced to about 1 Percocet per day (I ask the same questions you do: is the pain real; do I need to take something; will taking something mean I'm dependent on pain meds, etc.) and after a capsule endoscopy showed no evidence of inflammation discontinued the Percocet. The pain didn't stop, though. In October I went to the ER because I couldn't stand up, and a CT scan showed a low grade blockage in my terminal ileum (a preliminary read said I was fine so they discharged me; the corrected read showed up in my file a few days later). I was still in pain and out of commission several days a week. I went back to the hospital in early February for the same pain (my GP wouldn't treat it) and they "couldn't rule out a partial bowel obstruction" again. I finally forced the issue with my GP (my crohn's responds really well to steroids and 6MP gave me pancreatitis so I am on Entocort at the moment and stuck in the "it's crohn's but you're an unusual patient" place) and she put me on a Butrans patch. Reading about Butrans gave me pause; I'd rather take something for the pain when I need to, but I am giving it a try. It helps, but when I exercise I am still in quite a bit of pain.

I have taken Lyrica, but for migraines. It didn't help the migraines, and made me feel loopy for the first couple of months (I had to titrate up to 150mg really slowly). I also gained a significant amount of weight from it which I really didn't like. In addition, I have enough brain fog from chronic migraines; I don't need to make it worse with a medication that wasn't really helping the headache pain. After 18 months I spoke to my neurologist and went off it.

I really feel for you. My body may be doing the same thing yours is, but I think I am always on the verge of a new flare. When I get run down (I am a single parent with three children, one in college, one about to go to college, and my oldest on a break from college, and my wonderful 94 year old Mother lives with us as well) I have a bad flare. My GI has said he'll move me to something stronger when/if I have another flare, but meanwhile I remain in pain and in limbo.

Of course, I'm not offering much in the way of advice, am I? Your pain specialist might consider a Butrans patch (low dose bupenorphine); it doesn't affect my brain in any way I notice (which is great; I hate feeling drugged). My biggest issue is being on something all the time rather than as needed. While I'm not working at the moment, I used to be a college professor and hope to return to education one of these days, so I like my mind to be sharp.

I'd be really interested to hear how well Lyrica is working for you.

Last edited by Jabee; 02-28-2017 at 10:04 PM.
02-28-2017, 05:26 PM   #5
Hypocrohniac
 
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Hey HappyDiver.
I can relate on so many levels! I do take Lyrica - a slow build up to my current dose of 225mg morning and night. I've been on this dose for about 8 months. I really cannot tell if it is helping. My body still sends pain messages everywhere, so it feels like my guts, head and joints are all screaming for the most attention!
Have you tried tramadol? I find that I don't tolerate 50mg tablets as they are a quick release. 100mg or 150mg are a slow release over 12 hours. They used to work, but now they seem to amplify the pain and give me rotten headaches. I recently tried 200mg -was ace! Took the teeth out of the pain (it never really goes away does it?) and I was cleaning the stove with a toothbrush.
I am planning on trying a nerve pain/acupuncture type in an attempt to get my stupid pain signals sorted. It's in Melbourne (as am I) - want me to give it a try for both of us?
02-28-2017, 08:22 PM   #6
HappyDiver
 
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Hey guys, thanks for the replies! Ronroush7, I know Gabapentin is a related drug, so it's good to hear it helps with the leg, even if it doesn't nix it entirely.

re: Jabee : it sounds like "painkiller math" is a relatively common problem. The only stuff I've had access to on demand is high-dose codeine (although once when I went to emergency writhing in pain, they gave me morphine. Looking back that was horrendous and should have possibly inspired some investigation, but they were dealing with a monstrous gastro outbreak at the time and given I was having gut pain so intense I passed out twice, they wanted me as far away from the gastro bugs as possible).

I'm sorry the Lyrica didn't work well for you and that you had some unpleasant side effects - reading up, it sounds like those are relatively common (around 10%? which to my mind is quite high, but always means it's worth a shot). I imagine it's really hard to get the hyperalgesia to settle down when you still have inflammation causing troubles - I think I'm in that boat, although in terms of obstruction risk and so on, my condition is a lot more mild than that of other people on here (burning cramping pain, stabbing pain, constipation alternating with urgency, but almost no bleeding and no obvious narrowing). There's definitely inflammation and Something Is Going On, but there's also good signs that I've developed this hyperalgesia because of that.

So what happens when you calm down the hyperalgesia and still have flares and inflammation? I'm assuming it can easily come back. More questions to ask the doc, I suppose.

So much sympathy for the limbo I don't know why people's doctors don't seem to take pain seriously. I think I've been lucky, for the most part. I've had everyone from nursing staff to GPs to specialists say "you should never be in pain, and you should certainly never be in THAT much pain, that is not okay. Even while we figure out what's wrong," and after reading this forum a while I am feeling very fortunate and loved. I suppose the good thing is that supportive medical staff are out there!

In a way I understand that, to them, pain seems less important than trying to work out things like, well, preventing necrotic bowel and so on, priorities; but pain changes you. Long-term pain changes your brain. It's a serious mental health and quality of life issue. I don't think it's something that can be dismissed. While there are always side effects that need to be balanced, I don't understand why your pain is not being treated properly. Is there any chance you can go see a pain specialist? (I will be recommending this to people since my pain specialist was super lovely, although I hear they are not all great)

Hi Hypocrohniac (nice nick btw). I'm sorry the Lyrica doesn't seem to be helping. I get the impression that if it was you would be able to tell I've never tried tramadol - only codeine. I know what you mean by "the pain never really goes away". I've had a few moments where it disappears for some reason and I sort of have to reassess my entire body! What is going on! What is this strange sensation! Let me know how your needling nerve pain goes. Try anything once as they say (except, you know, arsenic, etc)

On that note, I'm only on my second day of Lyrica. Have to admit, I wasn't impressed yesterday - since I was more or less the walking dead. I managed to go for a run but only because I was so determined. I staggered out to the car (I was okay to drive short distances, but wouldn't have wanted to go too far!), and then somehow once I was on the treadmill (too hot for the trail) for a few minutes, everything woke up.

But this morning I woke up feeling pretty rested, and yesterday and today I've had long periods where the pain was randomly not there - it faded in and out like a bad radio signal? I'm only on 25mg (very slowly easing in) 2x a day (so 50mg a day), so I'm impressed that anything at all is happening. Mind you, some drugs work fast for me. Not sure why. I remember when I started Zoloft I got the zaney "get up and go" of a new SSRI within 24 hours. That's the adjustment period, and it settles down, but heck!

Side note, my pain doc thinks some of my problem will turn out to be gallstones (or, as she put it "sludge") which bothers me. I eat a low-carb, high-fat diet, dammit. I *use* my gallbladder! I might trawl the forum for some more on this - I've heard that you *can* potentially deal with gallstones without surgery, which would be my preference. I'm not scared of surgery by any means, just scared of removing an organ that I actually use.

Anyway, that's my update. I am so wordy...!
02-28-2017, 08:39 PM   #7
Hypocrohniac
 
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Snap again! I asked them to check me for gallstones, and yep, I have 3! They said that since my gallbladder is not inflamed, and they are not blocking the bile duct, they can stay where they are. I asked what I need to look out for in case they do block the bile duct - vomiting blood apparently - ace! Add that to list of waiting for revolting things that may happen!
Glad the lyrica is doing something! Can you please do some running for me too? You amaze me!
04-29-2017, 07:43 PM   #8
HappyDiver
 
Join Date: Aug 2016
Location: Victoria, Australia
Hello again all, I thought I might post an update here (also going to post on my "diagnosis / my story" thread with more detail): the Lyrica is going very well! I'm now on 150mg per day and that seems to manage my pain excellently, with one caveat.

It only seems to work effectively if I stay on my keto diet (this is how I was managing my pain and nausea since long before my diagnosis - it's not 100% effective but it does reduce my symptoms. When I go off keto, everything gets inflamed...). When I'm eating All The Carbs, my symptoms are exacerbated, and apparently that dose of Lyrica doesn't quite cover it, and I have to resort to codeine and - very rarely - Endone.

In terms of side effects, I've been very lucky - no noticeable weight gain (well, probably some due to eating too much on fieldwork), and the zombie effect only lasted for one day after I started taking it (and whenever I increased the dose).

For the most part (when I'm eating properly), I can replace my pre-run codeine with an extra 25mg of Lyrica about an hour before I head out, and this also works very well.

So I seem to have hit the jackpot, for the time being! I just got back from 2.5 weeks of fieldwork though (on a research vessel in the Great Australian Bight), so I have to get my diet back under control before I can be properly pain-managed again.

I did some extra running for you, Hypocrohniac on the boat there was a treadmill, which was hilarious because every time we rolled over a wave, obviously I was suddenly running "uphill", only I couldn't drop the speed the way I normally would if I were running up a hill... very intense training :P I did end up straining my calf muscle. Whoops.

Also, that's interesting to hear that they're just leaving the gallstones there - I mean, that's good, because unnecessary surgery is obviously to be avoided, but I have never heard of that outcome! Excellent. Fingers crossed there is no vomiting blood. That does not sound like fun.

Apologies for the delayed reply...!
04-29-2017, 07:47 PM   #9
ronroush7
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No problem.

05-01-2017, 12:23 AM   #10
tots
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My GI was the same way with pain meds, his feeling, it dosent cure CD so he wont prescribe it. My response- it didn't cure his kidney stone but, I bet the Drs still gave it to you. We all know pain meds cure nothing. At times though its the only way to make it though the night or though a shift at work to a million other things we need to do to keep life moving forward!
He then gave me the meds!


Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
05-01-2017, 07:04 PM   #11
Jabee
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Lauren--

That's a great response! I'm never on the ball enough to give a good response when doctors say nonsensical things.
05-01-2017, 07:20 PM   #12
my little penguin
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❤️ it !!!
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