Hip / back pain

Hi Prettypinkroses 

Sorry you are in pain. I would speak to the gp see if he/she has any advice. My personal advice would be do weight training and build the muscle around to support your hips. I should just say i think weight training is the answer to most things. Ive seen people at my gym who have been written off by their doctor have huge improvements, it takes time and consistency but so worth it. Sending hugs. Xx

Hello Bungle1  thank you so much for your reply. Yes I do do weight training and I use a Pilates reformer which I find super helpful. Also have a dog which I walk regularly so I feel I’ve got good core strength etc on my side now (which I definitely didn’t before). Ordinarily when this pain pops up it’s because I may have done a bit too much walking or have slept funny or something. But this time it’s just different somehow. Can’t put my finger on it but mostly the pain is different and at a whole new level. I suppose it could be something like a trapped nerve added into the mix but just clutching at straws here. Whatever it is it’s not very happy  I just need to rest it and probably give the GP a heads up. I suppose an ordinary xray might the way forward if I can’t wait the two weeks until my scans. 

Thank you for being so kind and listening and responding. Much appreciated . X

Hi PPR,

Really sorry to hear that you’re in such pain. It sounds awful and could as you say be nerve pain. The fact that your scans are coming up very soon is good, but if it’s really unbearable I would go to your GP.

 I have every sympathy with you as I developed awful Lower back and hip pain back in February, after finishing treatment last November. A spinal MRI showed several areas of significant stenosis at the base of my spine with nerve contact. I had never before had any sort of back ache and had always been physically active and fit. It was utterly debilitating and my gp referred me to the pain clinic as an urgent referral. The waiting time is 46 weeks and I am still waiting. I have been paying to go to a private back pain clinic weekly for osteopathic treatment which has helped to take it down a few notches but still far from good. I am also doing specific targeted exercises. In the meantime my GP keeps prescribing painkillers but as they are so strong I’m reluctant to take them regularly. Sorry to go on about me , as this is about you, but just want to say how much I feel for you being in this situation. 

I really hope that you can access a diagnosis for your pain and some effective treatment. If it is nerve pain there are specific medications for that, such as Pregabalin.  I hope you get some help quickly.

Sending hugs xx

Hi,

I'm wonder if you may actually have hip pain from something completely unrelated; I have a bit of arthritis in my hips and have had one replaced just before I was diagnosed (had hip problems from childhood) so I do occasionally get hip pain that I am fairly sure is this, and not related to AC. I am not saying your is arthritis, but just that it's probably nothing sinister, especially if you are being monitored

I have just last week had a check up from oncologist - I am  four years post treatment too - and he said it was extremely unlikely to recur after this amount of time. I think treatment varies from area to area, so I am not sure how your treatment is differing from mine, but I am also being treated privately and I have not had any scans for three years, just the lovely DRE. If anything was going on in your hip, or your bladder, or anywhere else, I am sure something would have shown up by now.

You sound like you are in a lot of pain and I would possibly look at going to see your GP as it might well be something you need different treatment or meds for. If all your scans are clear but you are still suffering, you will end up back there in any case.

I am sorry this all seems a bit garbled, but I do understand those awful feelings when your brain just starts spiralling. Fear of recurrence is very real for us all, but keep telling yourself you are well monitored, and at four years it is unlikely.

I wish you all the very best, please let us know how you get on xx

Hello Mrs Vanilla  I think you’re probably absolutely right, it is mostly likely arthritic pain. Although the hip pain I have is apparently related to the radiation - I think it causes damage to the bones and tissue along that radiation line? It’s just being particularly stubborn and annoying this time. Normally I can be on top of it in no time as I’m really pro active but just can’t seem to knock this one on the head. I’m not really thinking is anything sinister as it would be practically unheard of after 4 years and bone mets are very way down the line in order of mets for our cancer. Just a bit fed up and out of self care options and shouldn’t have googled it    (will I never learn???). 

Sometimes you just get to such a good point and then left field another curve ball arrives. It’s just so annoying. My girls are on half term and I’m just hobbling about and not able to do much. I might call The Marsden tomorrow and just say can we bring the scans forward not because I think it’s sinister but because the scan will also show what my hip is up to and then that might expedite getting it sorted which would be a huge relief! I feel more 95 than 55 right now! 

many thanks for taking the time to reply and the advice, so appreciated x 

Hello Prettypinkroses 

Lovely to hear from you again, although I am really sorry that you have these problems with your hip.  I am over three and a half years from the end of treatment and had increasing hip pain.  My GP first referred me for physiotherapy, where I was told it could be age-related - he took one look at my face and back-tracked!  Prior to treatment I had absolutely no problems with my hips and was extremely active, doing a 10 mile-walk with my dog was nothing to me.  I had a DEXA scan too which showed nothing, it wasn't until I had a hip x-ray and saw my GP who told me that I had degenerative osteoarthritis in both hips. So eventually hip replacements are on the horizon.  I asked if this was due to radiotherapy and she said it could well be.  You are much younger than me and it could also be sciatica which can be excruciatingly painful.  However, I am only talking from my own experience, I am not a medic!

My urine flow is very different too - I think I have stenosis in the urethra.  I have to go the loo at least four or five times during the night (was once before) and although my bladder isn't full I go for a few seconds, wait, and then pass some more.

I agree that your GP would probably be your best port of call, my GP has been so helpful and referred me with each of my complaints (once you have a cancer diagnosis the referral threshold is very low) but she is also realistic about the side effects of radiotherapy.

As an aside, my osteoarthritis may well have shown up on the many CT and MRI scans I have had when having checks, however I was told by the oncologist that they check for recurrence and wouldn't always mention other findings.

Best of luck in getting to the root of this, please let us know how you get on.

Irene xx

Hi Prettypinkroses ,

I often read previous replies on posts & say I’ll not repeat advice etc.,  this is different though, I have to share my experience & just to say I completely understand your pain!! I’m presently 7 & a half years post treatment & my hip & back pain is worsening by the week! I was X-rayed a couple of years ago when I first went to the GP & told I had some osteoarthritis in my left hip (I also have osteoarthritis in my hands, feet & ankles), it was thought it wasn’t severe enough to be causing the level of pain I had, I was referred for intensive physiotherapy where the physio thoroughly assessed me & said he thought I had GTPS (greater trochanteric pain syndrome) & bilateral sciatica, he gave me a physio programme & after 3 more follow-ups discharged me. I have continued with the physio programme but the pain is on another level at the minute. I’ve also started a strength & balance class to try & help. I’ve relented this week & made another appointment with my GP as I need some more advice.

The GTPS makes sense to me as I also get minor cramps sometimes around the top of my thighs & I know there’s no treatment for it but I need to be able to manage the pain somehow. I’m at the stage where I’m having to restrict my duties at work because if I’m on my feet for too long I lose at least part of the next day to that pain!

Regarding urine flow mine has also altered over time, like with Irene I suspect I have stenosis of the urethra & possibly that the radiation has affected my pelvic floor & reduced the stretch in my bladder. 

Give your GP a call, I wasn’t able to get an appointment until the 19th November but I’m chasing it up every day to try & get in earlier.

Keep us updated. 

Nicola 

Hi Nikki65  so lovely to hear from you! I am sitting in the GP waiting room right now! Yesterday and last night were just agony so I’m giving in and seeing someone. 

I’m sure like you say it will be osteoarthritis probably due to the radiation therapy etc but wasn’t expecting this sudden worsening! Anyhoo will see what they say. But I have to cave and get some help as I’ve run out of options! 

Like you I’ve been really good at keeping on top of things and I even invested in a Pilates reformer bed in order to help me strengthen and keep flexible. But this is a whole new level of pain I didn’t know existed. I also had months of rehab physiotherapy when my hip first started showing signs of pain years ago.  I think I used to have quite a high pain tolerance (I’m known for being g quite stubborn and not taking any pills if I can get away either it) but right now I’d happily take anything that might possibly help. I can’t concentrate on anything! I think that something in my hip is not going into place when I stand up (could be inflammation) and this causes the sharp pain to go along with the agonising constant pain. Super!!!  I also think my pain tolerance has waned since my cancer treatment. We seem to end up with all sorts and I think this definitely brings tolerance down. Anyhoo, will see what GP says and will keep you posted. 

Thabk you all for all your lovely well wishes and help. Xx 

Nikki,

Please tell me you didn't say 19th November??!! That is shocking. Sorry doesn't help you at all, but I am horrified at this. I think with this level of pain I would be saying I need an emergency appointment; don't know if you can do that at your GP practice but surely you can't seriously be expected to wait that long.

Hope you get it sorted soon.xxxx

Hello everyone, 

So I saw the GP (who yawned 5 times during my 15 min consult!!! FGS) Just incredible really but hey ho. At least I got a same day appointment. Nikki I’m so sorry you have to wait so long! 

So we have agreed to wait for the scans that I’m having on 4th Nov as Marsden should be able to share them with our GP. I don’t want to have any more scans than is absolutely necessary. Meanwhile she has given me some Tramadol which I’m to take alongside paracetamol four times a day. I’ll be rattling but frankly I don’t care right now. Took a while to work last night but they did work and what a relief that was. Actually lying in bed and being able to move or turn over without yelping in pain, I realised just how restricted and how much constant pain I was in. 

GP thought might be loss of the cartilage in between joints, maybe stress fractures and/trapped nerve. So will keep you posted but at least for now I can live a bit more pain free until we get something sorted.

Nikki I hope you get sorted soon too, I also thonk you should ask for a more prompt appointment! My 85 year old mother has the same thing, she has to wait weeks to see a GP then turns up and is assessed by a nurse before they decide if she can see a GP! Bonkers! 

love to all xx