Skin burning

Hi Bh6063

Welcome to the forum. I'm sorry you are in pain. I would have suggested instillagel but you've said that's not really helping. I would speak to your medical team again and insist they do something. The only things I can think of to try are an over the counter pain relief gell or one of those cool strips for headaches but your doctor may not approve and if it was me I'd be reluctant to use anything they haven't approved. Sorry I'm not much help, hopefully someone who has experienced this will pick up on your post. Sending hugs. X

Hello Bh6063

I am so sorry to hear you are in so much pain - I don't know what else to suggest as all the drugs you are on I had at the end of treatment and whilst they didn't completely eradicate the pain, they took the edge off.  And you are two weeks away from treatment which can work quite quickly in giving relief.

The only thing I can think of is to submerge your nether regions in luke-warm water, I always recommend the Sitzbath (Amazon) a portable bidet that sits on the loo and I used this during treatment and beyond.  But I am guessing here, and hoping that someone who can be more helpful than me picks up on your post.

You must be at the end of your tether - sending a very gentle hug and hope that you get some concrete relief.

Irene xx

Thanks Bungle1, I might try some gentle ice anyway. Anything is worth a shot at this point. X

Thanks Irene, I’m hoping the treatment gets to work quickly and takes some of this pain away and aLao hoping the pain from the side effects won’t be too bad. We have a bidet toilet which helps, will order a sitzbath though and give that a go. Thanks again. X

Hi Bh6063 ,

Firstly welcome to our little corner of the MacMillan Online Community although I’m sorry to hear of your recent diagnosis & to hear you’re suffering such discomfort right now. Hopefully once you begin your treatment you’ll find some of this will subside for a short time at least.

I see you’ve already received a couple of great responses to your post & the only advice I would have is similar so I won’t repeat. What I will say though is sometimes you have to be really insistent with your Dr’s regarding pain relief etc., although I see your on quite a lot of oral meds already. I would possibly go down the route that  Bungle1 has suggested & try ice packs or cooling packs. 

I really hope you get some relief soon. 

Nicola 

I relate to this salt in wound pain, that's exactly as I've tried to describe it... I'm still awaiting treatment, which should start within weeks, but when that kind of pain kicks in, I find nothing really helps. My 'burn' pain feels like it's inside. I cant imagine any cream would help that :( I'm on pretty much the same meds as you, but am trying to work through it with the hospital team to get better pain relief. I hope you find something that helps... will let you know if I do! Xx

I would say, that I've been using a hot water bottle on my lower back in the evenings... that does seem to help with the nagging, aching pains. Not tried the cool packs, but as I say, my burning seems to be on the inside and it's not there constantly, so I've no idea what is the right thing to do, hot or cold. Xx

 Hi JenW,

Thanks for the reply. I’m sorry to hear you’re also struggling with pain. I ended up speaking to my GP again and explained in great detail what my pain is like. She ended up giving me pregabalin75mg 2x a day. I’ve only been on it a couple of days but it seems to be helping with the burning. I’m not pain free but I’m certainly more able to function with my day to day life which was what was getting me down. 
might be worth a chat with your doc to see about neuropathic analgesia. Xx

That's interesting... and good to know it has helped you. I may consider going back on it for a while, but have weaned off quite high doses of pregabalin for anxiety more than once. I am taking Amitriptyline some nights, which doesn't really help with the pain, but does help me get more sleep inbetween. It can leave me groggy during the day tho. Xx