Holiday tips

[Suzysheep]

I have nerve damage... Possible PN ......and I have burning pain in my rectum and coccyx.

I am booked to go on holiday soon, but feel like cancelling as I don't know how I'll cope with a 4 hour flight and transfers etc.

Has anyone got any useful tips for holidaying with this painful condition when sitting is near impossible??

Have any of you canceled because of your pain?

Any useful pain killers I can ask my dr for to get me through?

I am already on gabapentin, but to be honest, I'm not sure I have the dose right as I'm still in considerable daily pain.

Thanks

[ireallymeanthis]

I have a similar sounding problem and I am on maximum gabapentin for it. Firstly, I would have a few days on the muscle relaxant amitriptyline (or nortriptyline) coming up to the journey, then taper off when you are at your destination. I find I can come off it within a couple of days if it has been a short course.

Diazepam is the other really good drug for this. You need to be used to using it before you go though. If unfamiliar with it,give it a try.

Both drugs tend to make you a bit stupid so you had best compensate for that with careful planning in advance; i would have a notebook with written reminders of what you need to do and when,unless you have a companion with you who is good at all that stuff anyway.

[LookingForHealth]

This is probably an unnecessary question but you do use a cut-out cushion that you take everywhere for sitting including on the plane? I never go anywhere without mine which is quite thick at the back where the cut out part is. It's a nuisance having to stuff it in my hand luggage but I couldn't possibly travel without having it to sit on. I find planes are worse than trains but if you can get up and stand/move around from time to time it helps, obviously.

[edythe in reply to LookingForHealth]

I have worked out how to deal with a 1h-flight but I would find 4 hours very difficult. If it's possible (as it is with easyjet for very little extra) book an aisle seat in advance. Then you can move about more freely without disturbing other people. Usually sitting on the loo seat provides respite so do this regularly! And I definitely agree with the idea of taking more medication beforehand so as to prevent unnecessary tensing up - as far as this is possible.

[Pepper1977]

Look up the Pudendal hope Facebook group it's a closed group but the people can help you. T opicals rubbed onto the coccyx area can help. Pelvic floor pt. Katy bowmans restore exercises. Compounded suppositories mine have gabapentin lidocaine and valium in them. A muscle relaxer and donut shape pillow to sit on while traveling

[Sky58]

I have been diagnosed with pudendal neuropathy and thought my life was over. Indeed at christmas I was on 600mg of pregabalin together with tramadol . It was the suggested I take venafaline. So I do sympathise. However having completed a pain management couse I am beginning to get my life back. Daily stretches and Pilates have really helped. I also use a tens machine which I have recently taken on holiday. If you can get up and stretch on the plane that would help. I have also learned to do mindfulness which helps reduce the secondary suffering behind the pain. Have a look at a book calld mindfulness for health. It comes with a cd. I bought it on my kindle and there are meditations to help you focus your mind away from your pain. Another thing I have bought is a valley cushion. Expensive but so worth it . I take it everywhere. I have manged to reduce my use of drugs considerably. I no longer take tramadol and have cut the pregabalin by over half. However on the plane see if you can get a couple of diasapam . It will relax you . Hope this helps. Don't cance your holiday. Pace yourself and enjoy it .

[Ladydidi in reply to Sky58]

Hi there,

I've cancrlled w doctors note. Things to help: seat by bathrooms/aisle, Valium, pain meds, cushion w hole which I take everywhere, tiger balm patches, tens unit, download mindfulness or meditation music to iPhone. Traveling usually does make all pain worse so hopefully when you get yo destination you have a comfortable bed to sleep in, place to quiet your mind/body, hot bath. If not, depending on your pain I would def reconsider your traveling plans.

Best wishes

[mdonohue169]

Years ago I was in this situation. I was to fly to Florida and could hardly walk for the pain. At that time I had a very understanding primary doctor (had him for years till he left to my despair). He prescribed fentanyl patches and although those things are pretty heavy duty I will be forever grateful for the use for the trip. I never used these things ago but they work at least for the short term. Today with all the "specialists" I'm seeing (ortho, bladder, neuro, pain management) I doubt one of them would give me such a script. There is such hoopla about "prescription drug addiction" that you probably need to threaten a doctor with a gun before he realizes your pain is so extreme you cannot function. The fentanyl patches made me very ill to my stomach so I actually never asked for them again. I found I could use them for a few hours after which I became extremely nauseous but being able to get my luggage and myself on a plane during those precious few hours was a real life saver and my doctor trusted me not to abuse. And he empathized with my pain this empathy much lacking in the doctors I have seen in the intervening years. Good luck. I have been on massive doses of gabapentin and though it helps the burning stabbing nerve pain it did not relieve the excruciating pelvic and tailbone pain. And taking larger doses started to cause me to have memory problems. Both gabapentin and amitriptyline make you feel very tired and the latter made me so depressed that I considered suicide. Neither worked for that deep pain. I have a script for Valium which does work when I have severe muscle cramps and might help a bit but, again it just basically dopes you up just as badly as a narcotic without taking the edge off the pain. If you expect to make through the insanity of our modern airports I am convinced you need STRONGER DRUGS!!! I am not advising habitual usage but I have found that most of the people I have met who have to contend with chronic crippling pain do not abuse their drugs and my doctor told me that if you have not shown signs of addictive behavior before the age of 50 drug addiction is very rare. When I worked in hospitals I saw cases where seriously injured patients were put on morphine and just begged to be off it as soon as the pain subsided (I remember some serious awful nightmares when I was on it) and mildly injured patients with minimal pain cried and pleaded for more and threw temper tantrums when it was withdrawn. I am sick of doctors who know they cannot really relieve the pain and suggest anti-depressants or behavior therapy for extreme pain. Ask for something stronger just to get through the trip.

[Suzysheep]

Thankyou all for your replies and advice.

Lookingforhealth.... Yes, I have lots of different cushions. Coccyx ones, micro bead ones, flattish ones etc. to be honest, nothing works to make sitting comfortable, I just shift from cheek to cheek!

When I get to my destination it will be a nice relaxing holiday by the beach/ pool, so I don't really have to worry about that, except for eating out etc..... Sitting in restraunts and the like.

I think the main thing would be to get some form of back up pain meds like most of you have advised.

I just hope I'm not so anxious I ramp up my pain even further.

Has anyone been worried sick before a holiday, only to find things were better once there?? Or vice versa??

[Ladydidi in reply to Suzysheep]

Hi Suzy,

Mdonahoe has hit it spot on! To answer you Suzy yes, Im turning 50 this June and was supposed to go to Hawaii but I'm not bc I can't bare to think about the stress traveling causes me. I get very anxious about getting into a car to drive 5 min. Hence, I barely leave the house. However, 2 summers ago I did go to Hawaii and the plane ride was better than cars bc you glide through the air verses driving on the roads w all the pot holes. Plus had back of airplane seat so I could stand throughout the flight. Oh, I got s note from my docyor that said I had severe and chronic pelvic psin and needed to stand plus pee, I also have IC, so even if seatbelt sign was on I could still get up. That worked really well. Then I must say once I got to Hawaii I wasn't any worse than home and in some days better so it was a great trip. This year I'm just worse bc I had the neurostimulator implanted and the surgery made me worse. Otherwise, I'd def go to Hawaii agsin because it was worth are the pre-travel aniexty. But with that said you must bring Valium for aniexty, I take oxycodone daily for pain which is fairly strong, you'll need heat pads for low back, stock up on it all becsuse it will be much harder to get while on trip. The beach sounds beautiful....I'd go for it!!

Please let us know how it goes as I suffer from same questions.

Best wishes 🌞🌞🌞🌞

[Suzysheep]

I have decided it was not worth the worry and stress, so I cancelled the holiday

I need to get a diagnosis and pain meds right before I can even think about it. I'm gutted to be honest, but I couldn't risk having a bad few days and ruining it for everyone.

Xx