Hot feet

Hello AW3,

I’m sorry that you’re going through such a rough time.

With the pins and needles and pain it sounds that there could be some nerve involvement. As they gave you amitriptiline it seems your doctor suspects this.

 I haven’t experienced hot feet thankfully but sounds unpleasant. 

 I too was referred to the pain clinic following sudden onset back and hip pain which radiates down the legs which started suddenly 3 months post treatment. I have numbness on one lower leg. A spinal mri showed nerve compression and areas of stenosis at the base of the spine. I can’t tell you what the pain clinic is like as in my part of the country there is a 46 week waiting list for an urgent referral. I hope that it’s shorter where you are and that you can access some help and relief more quickly.

I can hear how it’s getting you down and really feel for you. It does seem that many on this forum have experienced arthritic type pains after pelvic radiotherapy.

 I am going to see someone privately tomorrow out of desperation and will let you know if I find out anything helpful.

 I really hope that you can get some help soon.xx

Hi I have arthritis in my hip which has got much worse since treatment, which ended on 24th January. The affected leg is very painful and that foot feels numb at times and like my foot ‘is in warm water’ that’s how I describe it. I still have an enlarged lymph node which showed on my 3 month scan. My next scan at the end of this month will hopefully show the lymph nodes shrunk. 
I’ve seen an orthopaedic consultant who said I can have a steroid injection in my hip but got to have an MRI spine first. I’ve never been scanned so many times! I take Amitriptyline for another nerve pain. Stick with it if you can. It takes a while but you do get used to it. I take mine around 8pm so the effects aren’t so bad in the morning. Naproxen didn’t do anything for me. Has your oncology team offered any advice? Late effects from the treatment can involve the pelvis and hips x

Hello AW3

There are quite a few of us soldiering on with various side effects after treatment and wondering what is normal and what is not, you have my sympathy.

I have burning hot feet but I can pinpoint exactly when that happened; it was when I had systemic chemo prior to radio/chemo that caused mine - it is a form of neuropathy.  Pins and needls can be neuropathy too.  Mine don't bother me too much, they are worse at night and I stick them out from under the duvet to keep cool (even in winter).  I am coming up to four years out of that particular treatment so I don't expect any improvement.

Pain in hips - yes, my doctor has just increased my dose of Co-Codamol to 30mg to see if that makes a difference and has also referred me to hospital as I may eventually need hip replacements.  Xrays show I have degenerative osteoarthritis in both hips.

But you are much younger than me and your pain and symptoms sound so debilitating.  It may be (and I am not an expert) that your muscles and tendons are suffering after treatment, there are other members who have had similar.

I hope your doctors gets to the root of your pain.

Gently healing hug

Irene xx

Hi AW3 ,

It would be worth asking your GP about nortriptyline, I was prescribed a low dose of amitriptyline some years ago for nerve pain but like you I felt hungover in the mornings & didn’t feel with it until mid-morning, I tried taking it earlier but it made no difference at all, my GP suggested nortriptyline & said it does the same thing but I probably wouldn’t get the drowsiness & sure enough I had no more hangovers! I only took it for a short time though as we found it wasn’t nerve pain but arthritis that was the culprit. It would also be worth asking about physiotherapy, this helped massively with my hip & back pain that I suffered after my treatment. 

Nicola