- Joined
- Aug 30, 2016
- Messages
- 22
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.
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.
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!
it !!!
