ICE

[Thunderman69]

I have some questions regarding the simple therapy of using ice packs..

I have been suffering for a year now.. A recent 6 week flare pretty much has confined me to home and the pain can get ugly at times. I am on relatively strong opioids and Cymbalta...and just started Gabapentin last week again ( made me real dizzy last year).. So I am only at 900 mgs on that and working my way up...

Amazingly, I didnt figure out until January of this year that Ice could be so beneficial. In my case, it nearly RESOLVES ALL MY PAIN! My question is why is that? This doesnt seem right to me. I have pretty much all anal, rectal, and tailbone pain. I also get burning in my thighs and feet. When I apply Ice to just above my butt crack area I get tremendous pain relief. SInce January My rear end is on ice for up to 12 hours a day. It not only helps with the pain, but it keeps me from relying on greater and greater doses of percocet on top of my morphine base! Ice - it really is a simple and natural wonderful pain mgmt tool.. It almost seems to me that there could be significant inflammation going on here that the ice is helping with as well? I have been seeing a lot of talk on here lately about hernias and tears.. I am wondering now if i could have some form of rectal/inguinal hernia that is creating pressure on pudendal nerves.. And the ice is having some coorelation here. This disease really gets your mind wondering... And my doctors are all clueless so I am left ( like all of us here) to figure it out!!!

Also, if anyone knows... Isnt the sacrum located behind that area I am icing above and below the tailbone? I wonder if the ice is resolving so much pain if my problem lies in the sacral area... Lastly - putting ice directly on the skin isnt good i know but sometimes my pain gets so severe that its the fastest way to get instant relief.. Constant icing over long periods of time is probably causing damage as well correct??

I appreciate any insight here,

MS

[calluna]

Lots of interesting questions Thunderman. And I sympathise about the gabapentin side effects too. I hope that it helps you.

First of all though, I am so glad that you've found this simple and effective thing. Ice isn't exactly the most convenient of things to manage in general, but for many of us (including me) it is our first and best help.

In my case, when I first apply ice, it hurts - in fact it hurts a lot. But soon it goes numb, and that means no pain. So that's why it relieves the pain for me, because everything gets completely numb. My pain is entirely in the pudendal distribution, by the way.

The sacrum is above the tailbone - the spine comes down and joins to the top of the sacrum - and the tailbone is below the sacrum. I am probably using all the wrong words here not the correct medical terms at all, but that's how I understand it. And it sounds to me as if you are putting the ice right over the sacrum. I don't know that I have any real insight to add here, but I'd be thinking the same as you, that there's something amiss in that area.

With regard to constant icing, I think (and I hope that someone will correct me if this is wrong) that the main risk is possible tissue damage. Because of this, it is important not to have the ice pack actually in contact with the skin so that you don't get frost 'burns'. Wrapping the ice pack in a soft cloth will reduce the risk. And something like a pack of frozen peas or a gel pack is a lot less messier than actual ice of course!

I have no idea about hernias or hip problems and any possible connection to the pain you have. But with regard to sacral problems, I'm wondering if you've had a knowledgeable physiotherapist assess you perhaps? - (I think it is physical therapist in the US? or is it just that it is two words physio therapist - anyway, a PT) - this might perhaps be useful.

[Thunderman69]

Thanks Calluna ,

I am lucky that I get relief in the sacral region then from a convenience standpoint. I just take freezer packs that are made for coolers and stuff them between my waist belt and my underwear right over the sacrum. I also have a nice gel pack freezer aid that my wife purchased for me at The Pharmacy that has a pouch that I wear bacwards with the freezer pack over the tailbone area. My rectal area still has some pain but much more manageable once the ice is applied up top at sacrum. Seems to me something is going on up that way... But it might not matter I guess - If I were to test this theory and freeze the other end of the pain towards the bottom at the anal passage maybe it would still give relief the same way? Sorry to be gross, but thats what we deal with here.. Maybe Im just numbing the entire distribution ( since the pudendal reaches up into the scarum if I am not mistaken) and it doesnt matter where you apply the ice as long as you get decent coverage.

I dont experience any problem at all with the Ice at first application like like you Calluna. With a nerve that makes total sense - when you have an exposed nerve in a tooth what does ice do? It is unbearable pain, right? So thats why I am having such a hard time with this ice thing. It makes me think my issue is more tissue related and the ice is reducing swelling or constricting a bulging hernia for example.. Like I said my mind wanders all the time these days...

I was going to get a neurostimulator implanted soon, but now I am going to seek a hernia surgeon first just to be safe. But thats a whole different story. Thanks to some of you on this site for slowing me down a little...

MS

[helenlegs 11]

Well that does make sense TM and sensible to get checked. If the problem is inflammation, I was always told to alternate the ice with heat.
Heat brings healthy blood into an area, and ice helps to flush out lactic acid and other inflammatory agents, then incorporating both heat and ice will provide both therapeutic benefits.
Have you tried it at all?
Take care,
Helen

[greeneyes]

I have used ice to treat low back pain for 18 years and it is the one thing that always helps. I also use ice to treat the burning sensation I get from vulvadynia. When the vaginal pain is bad I use a gel pack at night and it helps me get to sleep. The pain can keep me awake otherwise. My husband has intermittent back problems and he prefers heat. Heating pads never did much for me but then my back problems are not muscle-related. I think ice works well for nerve pain while heat may help muscle pain.

Greeneyes

[Violet M]

My urogyn had me put ice on the sacral area after pelvic exams to prevent a pain flare-up so apparently she had some reason to believe it would shut down pain signals distal to where the ice was placed -- maybe sort of like a nerve block does???

Violet

[Thunderman69]

Now that makes a lot of sense Violet!

It works so good for me that I wear it tucked under my belt all day, and lay in bed with it in the evening. The problem I have now is that I fear I have damaged the nerves on my skin (grey patches) and possibly inside my sacrum? I now get a different, unrelated to PN type low grade ache in the sacral area ... Maybe I am over thinking it.. I dunno - PN has turned me into such a hypochondriac! everytime I blink I have something else wrong with me it seems. Either its a side effect from one of the 10 meds I take, or a domino effect symptom from PN, or who the hell knows what! Ughhh


Matt

[calluna]

The nurse at the pain clinic had me put the TENS electrodes over the sacrum - same reasoning, I suppose. It did help a bit.

Grey patches, gosh that doesn't sound too good. Have you talked to your doctor about this? I'd suggest that you do, if you haven't already.

And - 10 meds?!! Wow that's a lot! I have just read elsewhere on the forum that you are going ahead with a stimulator - I hope that you'll be able to get off all this lot in short order.

(Re the grey patches - do make sure you mention this before your surgery.)

Wishing you all the best!

[Thunderman69]

Well maybe not 10 meds! Lets see - Ms contin, percocet, nuerontin, topimax, cymbalta, valium, hydrochlorothiazide, and colace. Close but no cigar! I was on baclofen as well but got horrible vertigo that caused my pupils to dilate and stay that way for hours.. Wife thought I had a brain anuerysm or something and rushed me to the ER. Turned out to be the mix of all these drugs in my system. Scary times indeed... I swear I am going to write a book or make a movie once I get better

Thanks for the well wishes Calluna! I decided to get the SCS after much deliberation and research. I was worried that if I got the implant that I would be unable to pursue PNE decompression surgery in the future. A surgeon from the Cleveland Clinic told me that he has performed many surgeries within the pelvis ( colorectal) on patients with these implants and that I shouldnt let that stop me at this point.

I am in desperate need of relief and trying to keep my job, as I just built a new home with a big mortgage on it! I need to work to save up for the surgery and this is part of my strategy. Even with PNE my Boston Scientific rep said that they are getting good success with some paients seeing 90% pain relief. I am trialing it by 3/21 and I cant keep it unless I get at least 50% relief. I would be happy at that seeing I am around a 7/10 most of time.

Of course it just masks pain so I will have to retain my lifestyle chamges, and be careful not to continue injuring the nerve (which I believe must be entrapped somewhere). But if it allows me to concentrate on work, and enjoy my family while I pursue the underlying cause then I am all for it! Have you heard of anyone approaching the implant with this mind set?

MS

[calluna]

I think you get the cigar anyway with regard to all those meds! I cannot imagine what taking that lot would do to anybody's system. My daughter is a doctor... I doubt she'd approve. But I know how it happens, things just get added on, one at a time, as need presents .....

With regard to mindset, I think that yours is admirable. Indeed, your determination is an example to us all. I do hope that you get the resolution to your pain that you deserve. It's all about quality of life, after all.

And just ten days to wait! I bet you've got that marked on the calendar...!