Hiya,
I’m new here and am hoping to talk to someone who has experienced or is experiencing severe joint pain and stiffness following chemo.
I finished chemo several months ago and experienced almost no joint problems whilst having it. But began to experience it around the time I had my mastectomy surgery, which happened a few weeks later. This has gradually got worse and worse over the weeks and months.
I am now in severe discomfort and pain much of the time:
- My husband has to help me to sit up in bed in the morning as I can’t bend or straighten any of my limbs without intense pain, this gradually improves over the first few hours of the day.
- I take stairs a step at a time, pausing a moment between each, regardless of when in the day it is and how mobile I have been.
- Walking is slow at best on the whole and I shuffle in the morning, when I’m at it’s worst.
- I have discomfort / stiffness / pain in all of my joints which is made worse if I exert myself i.e. If I do any bending - my back will feel worse than usual later that day and next morning.
- It wakes me at night. Turning is a nightmare!
- I also have a weaker grip now in my hands.
- Going from sitting to standing or vice - versa is painful and difficult, kneeling is almost impossible and if I need to I need to lean on something to push myself back up. Sometimes I can’t get myself up without the help of someone.
- I have the loan of a wheelchair for covering distance or where speed is necessary.
What is the cuase of this? How long can I expect this to continue?
What can I do to improve things?
- My GP did a test to check if I’m going into an early menopause as this can cause some joint pain - there was no obvious indicator, though I have had facial flushing, dryness and no period for months. My BCN thinks I’m probably in early menopause but not showing signs clearly yet.
- I changed my Statin medication, taken since I had 3 small strokes) I had in January this year, as these did cause some muscle pain, but the new ones have made no difference so far and it’s more than a week since I changed.
- I talked to my consultant Oncologist, they think it’s probably caused by the chemo treatment.
Does anyone have a similar experience? I’m really concerned this will get worse in a few weeks, as I begin hormone therapy then - Herceptin, Arimadex and Zoladex. These will definately cause an early menopause and more joint pain!
Please help. All I’ve found to help so far, is using a warm wheat bag on my joints or holding a warm cup of tea in my hands in the morning to get me moving!
Meg X
Hi Meg, I finished chemo over 4 months ago and my joints are terrible. Like you I struggle to get out of bed in the morning and have to hold onto something to get across the landing. I find if I sit for too long I can’t get up and walk but if I keep moving it increases my aches and pains in particular my feet, ankles and neck/collarbone. My hands are permanently swollen and my feet have gone up a shoe size. Turning over in bed is a real struggle at times. I was led to believe that the Taxol I had would cause hand and feet neuropathy but nothing was mentioned about joints. I wasn’t menopausal before starting chemo but I am now. I can’t take ant-inflammatories as I’m on the REACT trial but my breast surgeon feels I should come off the trial and see if taking NSAID’s might help. Lou x
Hi Lou,
Thanks so much for your reply. It sounds like you experience similar problems. It’s good to hear from someone who can understand what this is like! Thank you for sharing your situation with me. I look like I’ve got arthritis, especially in the mornings. I forgot to add to the message I wrote, that I’ve also been tested for arthritis too, but that the results came back negative so I know that’s not the cause either. As I mentioned before, my Oncologist says it’s probably chemo related, but that it’s very unusual for someone to experience so much pain and stiffness as a result of it. I used to be fairly fit and active, so it’s very draining and frustrating.
Have you found anything helps to aleviate the discomfort - I’m thinking complimentary therapies, massage, a warm bath? I’m still taking morphine for pain relief due to the op recently, but it’s not really doing much to help my joints. I spoke to a nurse on the Cancer Care helpline about it and she advised I request a referral to the pain clinic for a new assessment as morphine may not be the best medication for this type of pain, but I would really like to know if I can do anything else to help keep me mobile.
Thanks for your time. I hope your treatment is going well for you.
Meg
Hi Meg & Lou
Today is my first time on here. I had mastectomy with tram flap reconstruction 4 weeks ago after finishing 5 months of chemo and have been left with severe joint/bone pain. I consulted my GP who put it down to post op pain but it is getting worse despite taking tramadol and paracetamol. I experience severe pain with taxadol on the 2nd half of chemo treatment and would say that this is almost as bad and whilst I don’t wish anyone any pain it was a comfort to read that it isnt just me with this type of pain. I was having reflexology prior to surgery and i am now looking at going back to see if this will help, I will keep you posted.
Hi Africa,
Thank you for your message in relation to joint pain. I’m really sorry I haven’t acknowledged it before now, but was unaware of the reply until i logged in just now. Thought I’d have had an e.mail to tell me it was there, but I don’t remember receiving one.
I’m sorry to hear you are struggling too. Like you, when it comes to medcation, I’ve found nothing works to relieve the pain properly, but I have now found a few things that help me and can reduce discomfort:
1)Regular gentle excercise such as walking on the flat - but not any exercise where I have to bend my knee into a right - angle, (if this makes any sense!) Bending it this much is too physical and generally hurts me too much. I’ve been gradually building this up from just 5 minutes after surgery (up and down our road), to walking up to 2 hours (with a 5 minute rest every 20 minutes). I still avoid inclines and steps though and can’t manage long walks very often. I find it easy to over do it without realising it and often regret having walked so far on those days, but I’m learning to recognise the signs when I’m approaching my limit.
2)Ibuprofen in the morning helps a little if I’m really struggling. It’s more effective than paracetamol as it’s an anti - inflamatory as well as being a ‘pain killer’. This has been suggested by all the doctors I’ve seen so far, who are aware of it.
3) Most effective of all is a warm wheat bag / hot water bottle / my reusable Theraflex ‘elastic gel’ heat / ice pack, which hospitals use. They can be ordered very cheaply over the internet from several websites. I find the Theraflex pack my prefered option as it’s quick to warm in the microwave or boiling water and holds heat a long time without it being too hot initially.
4) Hand massage works wonderfully - obviously when done by someone else! I had the wonderfully treat of a scalp, neck, shoulder and hand massage the other day and I felt wonderful after it. So wish I could get that on the NHS. Unfortunately it was a one - off present as it cost £36 for 35 mins! I checked with my Oncologist and they were happy for me to have massage in areas where I’d be given a cancer ‘all clear’ and told the use of aromatherapy oils would not interact with my health / meds - although I know this unfortunately isn’t the case with everyone.
5) Finally, I’m taking Evening Primrose Oil Capsules at the maximum daily dose possible(6000mg p/d / x6 1000mg capsules), following consultation with my Oncologist and Breast Care Nurse. I’m told they don’t help everybody with joint pain, but some women find it improves the discomfort, so I’m having a try. I’m told it’ll be at least 3 months before I notice any benefit, if it works at all though. If you want to try this too, just check it out first with your consultant… as with all meds, these can react badly with some people / some other meds.
I’d be very interested to hear if you find the reflexology helps in any way. I hope your treatment is going well for you.
Meg x
i finished my REC in Feb 2010. I have joint pain- mainly my right hip and my feet. Have you spoken to your breast care nurse about it?? mine recommended cod liver oil tablets, and calcium tablets
have you had a blood test to check your calcium levels??
eva
Hi Meg, Thanks for your comments. i am taking small amounts of daily exercise since the op and building it up slowly like you, but whilst they have been keeping any eye on my iron levels since the op my white cell count dropped quite badly indicating the possibility of rheumatoid arthritis so my oncologist has referred me to see a specialist. I am unable to take anit-inflamitories due to having had stomach ulcers several years ago so will have to stick with the tramadol and paracetamol for now. I have an appointment for next week with the reflexologist but in the mean time i get my husband to massage my hands, legs and feet every evening with aqueuos or E45 cream which helps. On the plus side i have started my radiotherapy this week so there is light at the end of the tunnel, and after 3 ops and chemo i can finally see treatment coming to an end, just side effects to put up with, lol. Hope you are feeling better. xx
Hi Meg, sorry I’ve only just seen your message. I’ve tried glucosamine and chondroitin, rose hip, brufen (which I’m not supposed to take but I was desperate!) and paracetemol to no avail. My collar bone and neck were so bad I was sent for a CT which was clear. The pain is worse in my feet, ankles and knees. If I bend a lot say to clean up, I then get lower back pain. My hands are bad in the morning and if I walk the dogs, they just puff up. I’m seeing my oncologist tomorrow as I may need to come off the trial I’m on so I can take anti- inflammatories. I’ll let you know what he says but the comment is usually " its to be expected". I’m four months post chemo and it’s not showing signs of getting better!
Hi everyone,
Sorry I’ve not replied to the latest messages. I’m afraid my pc got a virus for a while and needed cleaning / fixing, then I had a PICC Line fitted which lead to extra complications: extensive bleeding and an serious infection. So been in and out of hospital for the past month or so.
I wondered if anyone has sought support aids for around their home, to make daily activities easier. By this I mean requesting:
A bath seat / bath chair
Devices to turn jar lids…
Something to enable me to scratch my back!!
Has anyone on here tried? Any success? Who did you ask?
I’m thinking of asking my BCN.
Thanks.
PS Has anyone on here also had a PICC Line fitted? If so, did you get a cover for it to keep it waterproof or were you also just told to cover it with cling film, as I was for the purpose of showering etc…!
I’m still trying to do a little walking regularly, but also want to join an aqua aerobics group to combat my awful weight gain since diagnosis. I plan to join a group for older ladies, so it’s not so demanding on my joints, but I mustn’t get the line wet. I will ask again tomorrow when i go to the hospital to have the line flushed, but if no joy here, must I buy one? Any thoughts?