New normal - looking for support


Sitting here in the car as my family have carried on our walk without me. My back, hips and general stiffness continue to be painful and I just couldn't walk far. Feeling very upset as I feel I can't do these little things with my family. 
I know I'm so lucky To be fighting this thing and I don't want to sound pathetic.

does anyone else suffer with these type of pains to this extreme? 


Hey Locket,

I don't have the same pains as you do I'm afraid I can't help you there. Just been through 6 weeks of horrible stomach pains after a bout of food poisoning which I eventually got on top of by fasting. Any type of inflammation can cause a lot of pain. I've been taking high dose carcumin which is good for this. Could your pains be down to the menopause? Are you on hrt? I thought I would get a chance to discuss this at my last appointment but then it was a short telephone call instead. Also, it may have nothing to do with it but your pelvic floor muscles support your back so if these aren't strong it can cause backache. Maybe I'm just clutching at straws here but didn't want to read and run. Hope it improves soon for you. X Maria


 I don't have the extreme pains you describe although my back and hips do feel stiff and a bit painful when I wake up in morning.  First thing after getting up I have an exercise routine which includes back exercises that a physio taught me and this helps to loosen things up.  Do you know why you are getting the pain?  For the first few months after treatment I had horrendous back pain which turned out to be mainly musculoskeletal from being fairly inactive during my treatment - I felt very unwell during treatment hence the inactivity.  I've also come across a lady who had pain due pelvic micro-fractures caused by radiotherapy so it might be worth asking your medical team about that.  Macmillan provide a comprehensive overview of pelvic radiotherapy side effects which includes a section about effects on bones - see following link:

 I know what you mean about feeling upset that you can't join in with family activities because of the effects from your treatment.  In my case it's lymphoedema and bladder issues that prevent me from doing a lot of what I used to. I was very physically active prior to my treatment and now I feel somewhat disabled e.g. I used to enjoy long distance walking but that's a thing of the past now. I'm just over 3 years post treatment now and I suppose I've got a bit more used to the 'new norm';  I'm a bit better at being, and more accepting of, the different me.  The recent covid-19 lockdown hasn't really fazed me - I'd already had a lot of practice beforehand, haha!



I read somewhere to check vit b12 as this could help with pains. 

Hi Locket,

I'm sorry you're having a hard time with pain and with not doing things you used to with your family. Have you spoken with your CNS's about the pain? Is there anyone they can refer you to to look into this more? I don't have the same type of pain as you but I do have lymphoedema, which becomes quite painful and swollen for me with longer walks. Just pre- lockdown I went on a weekend away with friends and even the shorter walks caused me lots of physical issues which I found so upsetting. You don't sound pathetic at all, it's really difficult coming to terms with these changes. I hope you can get some further advice and support. Sending hugs x


I wanted to say thank you for your replies. I felt overwhelmed at the time to reply. Every day is a different pain and feeling and it's hard to get my head round it all. As always Jo's ladies are amazing xxx

I feel stiff  in my hips if I sit too long or go anywhere in the car. My right knee feels quite stiff at times too. But not to the degree you have. I bought glucosamine to help with the joints, you could try that to see if it helps.

The pain and stiffness has eased off since I've taken HRT 

I am having the same pains. They are slowly getting better. Hips, feet, knees very sore after long walks, and stiffness after sitting or sleeping. What is HRT? I will have to try it! I have had a super emotional week back to work. So much pain each day my feet feel broken. Cried every day leaving. So you are not a lone! I know it will get better. I think the covid lockdown made it worse because for 3.5 months I was very inactive. On top of that radiation did a number on our insides!  

The new "norm" will take some time getting used to. I know there were a couoke weeks where I worried I would never be my self again, but things are better everyday.

The lack of hormones can cause your body to ache terribly. I had terrible pains in my legs, pelvis and feet. After 2 weeks of taking hrt the pains have 90% gone. It's only when I've totally done too much I ache and it's nowhere near as bad as it was. I thought I was going to collapse the pain was so bad before hrt. 

 I too am suffering terribly. I am a year out of treatment and everything hurts. i did a 25 minute walk yesterday because i was getting so depressed and i thought it would help but it only made me feel worse. I also developed Hashimotos thanks to chemo so my whole body feels enflamed most days. Got a new pain under my right frontal ribs. Taking meds for reflux but it is not touching it and it is constant. CT scan on august 15th of abdomen to see what is happening but fear it is my liver..

I miss my old self and my old life. i walk around in a fog most days longing to be more active and to lose the ten pounds that i have put on in the past two months. Everything seems like an effort...except the worrying and depression. i take some comfort in knowing that i am not alone in how i am feeling physically and mentally. we all must try to stay strong xo