Hi all
just wondering if any of you have experienced anything like this…
I’m newly dx with spinal mets, no other bone mets at this point. Got lots of other stuff going on, pain increasing etc. Yesterday, I woke in total agony in my left knee, which was radiating up tiwards my hip. It was constant but the level of pain was variable 4a few hrs. Took oramorph + cocodamol + by late morning I nearly passed out with the pain so went the hospital. I was green with the pain.
Obviously the main worry was a dvt but the pain was so bad I thought maybe I’d had a fracture or something. Various tests have not picked up a dvt thankfully + nothing obvious on the xray. Docs think most likely to be spine related, which seems logical but they want to repeat the Doppler dvt tests next week as a precaution.
Just wondering if anyone with spinal mets has experienced this sort of searing pain in the leg, sudden onset, etc? I just feel like it’s one thing after another at the min- unbearable pain in my leg wasn’t something I had expected based on what is going on. I’m starting to worry now that if the spine met is affecting my leg in this way, am I going to end up in a bloody wheelchair or something? Just seems so bizarre that this happened so suddenly + painfully.
I know anything is poss with this bast*rd of a disease but it’s good to get real feedback from those going through similar things.
As ever, I’m grateful for any advice 
thanks
Tina xx
Hi
Sorry you are having this. I know how vulnerable you must feel. The first symptom of my met in lower spine was awful pain down from hip to knee. I had varying degrees of this for about a week and then it went, only to start up a few weeks later. Feel free to send pm if you have questions. R.
hi
I had a similar experience with pain recently.Pain came on suddenly and in my case it was from the hip,down the leg to my toes.I have spine,pelvis and hip mets.I could only walk short distance with a walking stick.Onc did bone scan,ct scan and said there was no compression and it was decided it was sciatica.At the same time I changed from bondronat to zometa.Since changing to zometa the pain has improved and have managed after a few months to walk without the stick.I still have the stabbing pain down the leg,feels a bit like electric shocks but it is nowhwere as intense as it was.I try to walk and keep moving as much as I can as this seems to help and I find lying in bed at night and trying to sleep is the worse.
Onc did consider a blast of rads but decided to hold that back for a later date which I feel is good to have something to fall back on.
I really hope you get some pain relief soon.It is scary and debilitating as well as just damn painful.
If you look through the bone mets thread i am sure you will see postings from people with similar experiences which may be reassuring.
If you are struggling why not ask for a referral to the pain clinic or the pallative care team.
L xx
Gingerbud,
It sounds like you have sciatica, that is usually due to something pressing on the nerve that supples your leg.The pain travels along where the nerve supplies. It could be due to the spinal problem, but also could just be a disc problemthat usually settles with time.
What evr is causing it they shouldbe able to giv eyou sufficent pain killers, usually an anti inflammatory like naproxen or diclofenac; a pain killer like co-codamol, but also a nerve pain blocker like amitriptylline that would help you sleep too.Keeping moving is good, sitting is the worse thing, lie down instead. See your Gp for meds, but if you have any problems with numbness around your groin, anus etc, you should see someone quickly.
Fiona
Hi Tina
This sounds exactly like my pain. The vertebra in my lower spine are badly damaged. A hairline fracture at Xmas led to the DX of bone mets. I’m generally ok but occasionally a certain action or laying/sitting still too long triggers spasms down the nerve. Or just after my parmidronate infusion i get tumour flare in this area.
Fiona is also correct regarding sciatica or disc problem. Both cause the same sort of pain. I use diclofenac & co-codamol to manage the pain when it’s bad as she suggests.
You must see your GP or oncologist if it continues as it can lead to further problems if not managed.
Ingridx
Tina,
i was having horrible pain in my right leg,
from hip to knee
i saw my oncologist who arranged a ct scan and MRI,
the MRI showed 3 mets on my spine
my oncologist said the reason i am having pain in my leg
is one of mets has trapped a nerve.
i have had one session of rads to help with the pain 2 weeks ago,
and at 1st it made no difference & if i wasn’t taking painkillers
the pain was so bad i cried with it.
i am still in pain but over the last couple of days,its a little better, saying that i am taking painkillers 4 times a day too.
i do get more pain when resting and find bedtime the worst,i make sure i take painkillers before bed to help me sleep.
I’m starting chemo again next week, so hope it will help with the pain.
thinking of you and hope your pain eases soon xx