Interstitial Cystitis and Increased Nerve Pain? What's helped you?

I have Fibromyalgia, chronic pain and my nerve pain has been exceptionally bad for over 6 months. I was recently diagnosed with Interstitial Cystitis (chronic bladder inflammation). My doctor advised me that IC can have an impact on overall nerve pain in the body.
I am wondering what you all have tried to help with IC pain and the increase in overall nerve pain associated with it? Also, I’ve had increased nightmares and worse chronic fatigue. I’ve tried medications, natural sleep supplements/vitamins, relaxation music/meditations before bed, a “nightmare pillow” filled with lavender which a study showed helped with PTSD nightmares (I do not have PTSD nightmares, but I thought this method was worth a try) and nothing has worked to decrease the nightmares. Any suggestions or helpful tips for managing IC and the accompanying symptoms would be greatly appreciated.

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Hi Sara!

IC: I have painful bladder / bladder pain syndrome (PBS/BPS), which is sometimes subsumed under IC. In my opinion wrongly I think, because it doesn’t seem an inflammation in my case. My bladder/urethra hurts before I pee, maybe something like the muscles cramping - unlike UTI it stops once it’s flowing. My urologists haven’t found a fitting name ((vesical) tenesmus was one). Bladder exams didn’t find anything, but caused extreme pain during and one for days after, the other nausea and severe vomiting, these are likely MCAS immune system reactions.

I’ve managed to get my PBS almost completely under control with the supplement / amino acid / neurotransmitter GABA, which relaxes muscles and increases serotonin. That suggests that the pain is associated with low serotonin. I have to find exactly the right balance which means I have to take varying doses of GABA throughout the day. Since the jabs triggered MCAS I’ve had to increase the amount from ~3g/d to ~4g/d, esp. when I have histamine reactions which also flares the bladder pain.

In case of inflammations, like my jaw/tooth inflammation I seem to have been successful using anti-inflammatory supps. I don’t tolerate the spicy ones (curcumin, ginger etc.), but ALA, B2, D3, ginkgo, magnesium threonate, omega 3, PEA, PQQ, CoQ10, quercetin, resveratrol, rhodiola, selenium, EGCg, luteolin, silymarin, honokiol, parthelonide/feverfew, rutin, glutathione, olive leaf extract, apigenin. These are for inflammation too, but weren’t right for me for other reasons: mumijo, NAC, SAM-e, serrapeptase, zinc. Since October I’m using and increasing LDN, and I think part of its success for me may be anti-inflammatory. It’s best for my chronic fatigue.

For nightmares my first thought is if you’re taking anything that might be causing them?

My main one is trying out all the psychological techniques of re-imaging as in imagery rehearsal therapy. I’ve found them very successful for myself and for others I know who have tried it, there’s study evidence for their success, too. Whilst lucid dreaming or confrontation at daytime alone is pretty difficult, but I and others I know have had success with combinations, like using half-sleep phases for practicing “flying” or re-interpreting and changing the ending (chasing sharks turn into playful dolphins, bombs exploding into plastic bags or balloons bursting, chasing rogues into someone giving me back my lost wallet, you name it…). Falling sensation was just a lift/elevator, and/or turned into flight, with or without wings. Often “walking” on invisible glass pillars everywhere I stepped. That way I couldn’t fall anyway.
Learning to “fly” also helped for practice in the more advanced stage of tackling my fear of heights which is from very high down to nigh zero (but I keep checking and practicing).
This seems to change the brain’s neuro-pathways, gets it un-used to these images.
This film scene, one of the earliest ever I find is an inspiration.
In this case the builders are deliberately letting a wall fall down, but what then happens I’ve learnt to make happen in our heads when waking up or awake after dreaming something like we’ve caused a tin pyramid in a store, or anything actually, to fall down. It also helps me to stay calm when I drop things in the daytime.

My third idea would be to do all the recent health stuff for sleep (e.g. Huberman, Selsick): Circadian rhythm, up early (pulling forwards), look into earliest daylight, if possible sunlight, or daylight lamp, and as much as possible during the day, lights down or off in the evening, esp. blue from above, screens off. Aiming for sleeping 10 to 6, screen curfew or down after 7 or 8pm, esp. no more external media. Getting up when we just can’t. Using NSDR/yoga nidra if we can’t. And more.

My fourth - tackle any other possible triggers … if not with therapy or counselling then just by identifying and trying to decrease their frequency. If it’s “somatopsychic”, i.e. caused by the load of all the symptoms, grieving for lost dreams and old life, then trying practicing the attitude of “radical acceptance”, serenity prayer type, “acceptance and commitment therapy (ACT)”-type information, books, pain-adapted mindfulness e.g. Jon Kabat-Zinn…

Anything in here for you?

I don’t have IC, as I have been checked for it, but have a lot of instances where I have bladder pain, before (not during) and after I urinate (kind of burning/aching pain and no doctor can seem to find a cause), plus I also was having severe nerve pain in my toes/feet. Sometimes stabbing shooting pains for no apparent reason and also stinging, burning and cold feeling. I have been diagnosed with peripheral neuropathy. I decided to try Nervive Nerve Health (the one that has alpha lipoic acid 300mg and Thiamine, B6 & B12 in it. While I haven’t noticed it doing anything for my intermittent or at times prolonged bladder burning and pain, it has definitely helped my feet and toe nerve pain. I have also used the Nervive roll on on my feet and toes which helps as well. While I’m not endorsing Nervive, but just saying that I took it and it helped me some.

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Ah, that sounds just like mine. So GABA might help you too…

Great that Nervive has helped you!
The ingredients are ALA, B1, B6 and 12 would all be fitting.
However their forms are not the best, so I hope you’re not paying much for it…
If you feel you want to try increasing how it’s helping: ALA is better as R-ALA, B6 is better as P5P, and B12 better in any other form than the one used (the cheap genetically engineered one, cyano-cobalamin).

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I have extremely bad nerve pain in my leg. When it was in my foot I tool gabapentin and it was controlled. When it got so bad that wind on my leg felt like the world was on fire and was extremely painful my doctor switched me to pregablin. Both helped. I just got too high of a dose on the gabapentin which is why he switched me to pregablin.

I have PTSD related nightmares. Prazosin helped me with those. I don’t take it and the nightmares come back.

Mind you I’m not a doctor and who knows if it will work for you. But they work for me.

Thanks for that info, I’ll give the other ones a try!

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