Excruciating pain in the butt - sciatica sacrum coccyx? Can’t do anything ️

Hi,Jgau

Sorry to hear that you are in pain.  Hopefully it will ease soon.

Best wishes

Daisy53

Hi Jgau,

I have been a member of this site since my diagnosis in January this year and although I have got loads of information and useful tips I've never posted until now.

Reading your post rings so many bells with me that I thought I'd reply to let you know my experience.

Like you I've had EC and didn't find it too bad then moved on to 12 weeks if paclitaxel. I've had nine so far and after a few weeks I started getting excruciating back pain to the point I was only comfortable when lying in bed and standing/moving etc was unbearable.

My pain is more in the middle of my back and as I'd pulled a muscle in my rib getting out of a chair I thought it was linked to that and/or the side effects of paclitaxel.

Like you I was getting shooting pains/spasms which were getting worse. Initially I was taking paracetamol and ibuprofen which didn't really touch the pain although I did find the ibuprofen helped the spasms for a while.

When I saw the oncologist a couple of weeks ago she said it wouldn't be the paclitaxel and prescribed me codeine and arranged xrays of my ribs and spine.

The codeine did nothing to help the pain so I've been put on a low dose slow release morphine which although I was totally reluctant to try has made a difference to the pain and my ability to move about.

The X Ray's showed signs of Osteoporosis and I've had an MRI scan that I'm still waiting for the results from.

The Osteoporosis diagnosis totally threw me because although my mum suffered from this I've never had any problems with back pain and while I accept it may be due to this I can't shake the feeling that it's somehow linked to the chemo. 

I know my story doesn't help you but I just wanted to speak you know you weren't the only one suffering like this.

Ease keep me updated on how you get on and I'll let you know of any further developments I have once I get my results.

Hello CraftyCat21

Thank you so much for sharing with me.  I wonder if Oncologysts don’t tell us everything as we all react differently.  I read somewhere that some people suffer back pain problems after chemo.  My pain is very low butt top of thighs and like you spasms, which are awful.  I’m now suffering nausea so laying on the bed waiting for anti-sickness pill to kick in.  I can’t do any of my “normal” things like walking the dog.  It seems to be getting worse.  I had a bone scan, an mri scan and even a Pet scan.  I don’t know your age but wonder if your osteoporosis is consistent?  They said I had a bit of arthritis consistent with my age so it didn’t bother me.  3 years ago I fractured my back L3 but all scans show it’s completely healed.  So what on earth is wrong with us?  My chemo finishes beginning of October it will be 5 months.  Up until now I’ve coped.  I wish you all the very best and hope we can continue to compare notes.  Hugs Jan xxxxx

Hello....I am sorry you are suffering too. Sadly there are a lot of post chemo people who have problems with the spine. I was lucky. My GP knew I wouldn't be making a fuss about nothing so taking the pain seriously, he sent me to a neuro surgeon. The neuro surgeon ordered the MRI and saw that I needed a decompression operation to relieve the pressure on the sciatic nerve. He told me that oncologists won't accept the link but he says he sees so many post chemo patients that he has written a paper for the Lancet suggesting that although chemo doesn't cause the problems initially, it may accelerate conditions that would have developed and would have developed at a slower rate allowing the patient to cope better with a gradually increasing pain instead of sudden, instant pain. Somehow his suggestions made sense. I had a decompression of L4/L5. It has helped. Like you when at it's worst I felt unable to move and often I would start walking from A to B but after a short time the leg would seize up and if I couldn't sit, I would be dragging it. He also sent me to a neurologist as I had permanent nerve damage from the Taxotere but as you are having smaller doses, more often and are not describing the foot and hand difficulties, I think you may not need this follow up. Oncologists are even reluctant to admit this damage too although they have tried to avoid it by changing the protocol.

I hope you can both be sorted soon by seeing the right people and having the right scans. For me, post op, improvement took time but the leg pain is controlled now by a selection of pain killers and vitamin supplements which neurology also found deficient....B12, B1, B6,.....and these are linked to nerve pain.

Take care. Thinking of you. Love Karen

Thank you so much for adding this in - I know we communicated before.  Thank you again Karen xx

Thank you very much for your reply.  I'm sorry that you went through so much pain but I found your story  interesting and reassuring in that I'm not the only person to suffer in this way.

I haven't seen the oncologist since before the XRays but my BCN rang last week with the results and to arrange an MRI scan.

I'm afraid I really wasn't expecting the XRay to show anything so the fact it did was a total shock and I'm afraid I didn't really take in a lot of what she was saying but I do know she mentioned something about crumbling bones and a possible operation so I'm now wondering if this is similar to what happened to you.

I have another appointment with the oncologist next Monday so hopefully I'll find out more then and I'm definitely going to be more prepared this time and have a list if questions to ask.

I know I was probably being naive but I honestly thought it was a bad case of the aches and pains side effects that can be associated with paclitaxel even though I have never experienced pain like it.

Thanks again for your reply 

Kath

Hi Jgau, 

I'm afraid I've just seen your reply. I'm 61 so osteoporosis is certainly a possibility I'm just surprised how quickly it'll all came on especially as it was within a few weeks of starting the Paclitaxel.

Like you my pain just seemed to get worse and the spasms just took it to another level..One week while I was at chemo I just kept making g random 'ooof' noises as they happened and one of the chemo nurses who said I need to go back to the Doctor for stronger painkillers and wrote it up on my notes for the oncologist to see.

Like you  coped ok with chemo until this but the constant pain is making everything so challenging at the moment.

I have my 10th session tomorrow so I'll only have another 2 to go. Like you it'll have been 5 months.

I hope we both get answers soon. Please keep me updated and I'll do the same.

Kath

Hi Kath,

I sent my Oncologist an email today / he is at a loss as to why I have this intermittent butt pain!  It’s ridiculous.  I think it’s chemo related.  You will finish your chemo before me.  Do you have to have radiotherapy after chemo?  I do.  I’m a bit older than you in my 60’s.  I just want to stand up straight do some gardening and take the dog out.  Very best wishes Kath good luck with your pain management.  Let’s keep in touch xxx Jan

Hi Jan,

It's absolutely crazy isn't it. I was so sure mine was chemo related too that's why I wa so shocked when the xray showed osteoporosis.

I'm not having radiotherapy so once chemo finishes that will hopefully be it unless I need further treatment for my back.

Like you I just want to do 'normal ' things again. I usually so lots of crafting to distract myself but I'm finding it difficult to do anything at the moment which leads to too much 'thinking' time which is never good for me.

Take care and I'll keep you updated even if I don't hear anything until next week.

Hi Kath I’m having chemo tomorrow it will be my 11th session and this pain started approx 4/5 weeks ago.  Interesting.  Similar to you.  I hope I see the Oncologist tomorrow.  I’m getting very forgetful and I have a permanent fuzzy head.  Do you get that?  We are supposed to be away this weekend for me it’s going to be a struggle.  A while back I bought some hiking sticks but I think I’m going to need them for general use now!  Take care try not to worry  let me know what your Oncologist comes up with so we can share.  My pain this morning has shot down to the back of my knee so it’s getting worse.  Big hugs xxx jan