Back pain

Hi Poppydays2 

Sorry you are having a rough time. I didn't have what you are describing just wind pain etc. I have seen other people on here mention back pain more in line with your description so hopefully one of them will pick up on your post. You are nearly done, keep ticking those days and then it's rest, recover and get back to life. Sending hugs. Xx

Thanks, Bungle1. A silver lining on having this nerve pain is that it distracts from the other discomforts, so there is that. Appreciate your kind words! 

Every cloud. Xx

Hello Poppydays2

What you are describing sounds absolutely horrific and I am so sorry you are going through this as well as treatment going on to.  I didn't have anything like you describe and I am glad they are investigating it and giving you adequate pain relief, although I can understand you being upset over this.

I hope you get some answers, and with only three days to go it won't be long until you no longer have to travel to the hospital which should offer some small respite.  Please keep us updated.

Gentle hug

Irene xx

Hi Poppydays,

Thank you for starting a new thread on this. Something I had meant to do.

I’m so glad you are finishing week 5 but am truly sorry that you are in such pain. Can barely imagine how you’re getting through. My heart goes out to you.

 I think you already know my story. I completed treatment for ac in mid November. My biggest issues were bowel control and fatigue. Both improved. I had my 3 month scan on 10th February and results on 12 th March- full response to treatment which was amazing news.

 I very suddenly experienced excruciating back/ hip and thigh pain on 16th February. Completely sudden onset- literally overnight. I had a spinal MRI and was called for results on 17th March. The scan showed significant spinal stenosis and nerve compression on both L3 and L5/S1. 
Zero history of any sort of back pain. 
Unlike any pain I have ever experienced.

 I was given pregabalin and morphine and asked to come back on 24th when pregabalin was doubled and slow release morphine added. 
I have been told that it is likely that the radiotherapy probably contributed to an existing issue but find that hard to accept as was extremely active with no previous back pain. I know what you mean about the red hot poker and I am into week 6 of being awake from 2am pacing as lying down is impossible. I haven’t been given any plan other than pain meds. 

Like you I would be really interested to know if anyone else has had anything like this and if so what if anything helped?

Sending hugs xx

Hi Poppydays

I finished treatment at the end of December. About a month after treatment finished, I woke up one morning with severe lower back and thigh pain. I have pins and needles down the whole leg and a numbness in my left foot! It has slightly eased over time but I’ve been left with a weakness all down my left side. My physiotherapist has diagnosed a dislodged disc. She’s recommended traction but the oncologist said not until the MRI results are through. 
My GP prescribed Naproxen, which helped, but I’m still struggling to get around and weight bear on it properly! 

Hi Heather09,

I am so sorry that you had this experience and hope that you get more relief than what you are experiencing currently! Sounds like you have nerve involvement, too. Are you getting an MRI of your back? I would think that would be very useful to confirm a herniated or dislodged disc. 

I'm currently on narcotics for pain as well as gabapentin to help specifically with nerve pain. I did a two and a half week trial of ibuprofen (which is like naproxen) which I understand often helps with the inflammation. 

Please keep us posted on how you're doing. Sending you my best wishes for speedy improvement! Xx

Oh, PEB24, that sounds awful! The not sleeping bit is the worst. I don't think I have it quite as bad as you, but I do wake up in pain in the middle of the night and have to take pain medicine, and then the morning is the same thing--lots of pain until I get the pain meds on board. That's why the doc put me on a fentanyl patch. Is the slow release morphine helping you at all?

I would think there are other options for you besides pain meds. My father has severe spinal stenosis and has received epidural injections. I wonder if there are injections or something similar that could help you. I myself am scheduled for an epidural injection in mid-April.

I really feel for you because nerve pain is a special kind of hell. I spoke with a man who worked at a physical therapy clinic and he said nerve inflammation can take weeks to months to heal, which seems like a long time, but I'll take it if it means this pain will go away.

I'm thinking of you and hoping your medical team comes up with a good solution for you. Please keep me posted.

Thank you, Irene. I am so thrilled to have the weekend off, because somehow in my head, I feel like the radiation therapy is contributing to this (although none of my medical team have confirmed this) and rest sounds good. Anyhow, hope you have a lovely weekend and thanks for your kind words! Xx

Hi Heather09,                                           Im so sorry that you have also experienced what sounds like nerve pain after treatment. It sounds really challenging and glad that it has eased slightly but must be very difficult if you’re struggling to weight bear.

Have you had your 3 month MRI yet? It sounds like you have and are waiting for results but if not then please make sure your oncologist knows about your pain as I had to have an additional scan for the spine for investigation where they identified the nerve compression. 

Can I ask if you had ever had back pain before?  

I hope you manage to get some help with this. It sounds as though you have a good physio.  Please let us know how you get on and what’s recommended.

Sending hugs xx