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aches and tiredness

33 REPLIES 33
runner29
Member

Re: aches and tiredness

 
rosiecliff
Member

Re: aches and tiredness

The Sketchers sandals were purchased in our local Boundary Mills store (West Midlands). It has a lot of different outlets including Hotters and Sketchers.

 

Still wearing the sandals and Hotters trainers.although I feel my feet could still use a bit more under foot padding than the trainers give. They are very soft though.

 

Good luck

Roz

Motherhubbard
Member

Re: aches and tiredness

Just thought would pop back in. Still wearing both braclets and arm pain still has not returned. I think that we all under estimate our bodies when it tells us to slow down and take rest. I had mx and immediate reconstruction on 28 th aug last year, out of hospital on 12th sept and then full time working from 1st oct. Looking back I was so stupid. Still very tired and now trying yo take it easy when come home and then go to bed early when I feel tired. Xxxx
Mim53
Member

Re: aches and tiredness

Hi Nature girl - I am not very good at cutting myself some slack and making allowances for off days.

I think I chose to naively believe that once side effects to the skin had started to abate then everything else would be ok. Thanks for your encouragement!

Naturegirl15
Member

Re: aches and tiredness

Well done Mim53 to keep going through it all. I am not surprised you are feeling exhausted though. I thought I would bounce back into things straight after radiotherapy but it didn't take me long to realise this wasn't to be. BCN told me recently that people often underestimate the effect of radiotherapy and you can feel fatigued for up to two years post surgery! Combine that with aches and hot sweats causing lack of sleep from tablets and you realise why we have some off days.
Mim53
Member

Re: aches and tiredness

Hi, I had surgery in March to remove 2 small lumps, started on Letrozole and completed radiotherapy 3 weeks ago. I have been incredibly lucky, cancer detected by routine mammogram very early with excellent prognosis. So when I see what so many of you have gone through, I feel guilty that I am writing this post - my problems seem trivial by comparison!

 

Apart from 2 weeks immediately after surgery and a further two weeks to deal with a wound infection, I have managed to get to work each day. I have only worked half days and I am gradually trying to build up my hours back to full time. This is harder than I thought - I will have several really good days and feel able to do more then the following day...BANG!...I'm exhausted. I have read a lot about the fatigue one can expect and the need to pace oneself but it almost seems to be on an hourly basis. I don't feel I am coping with this as well as I should be. Is it 'normal' to feel this way? When I hear about surgery and treatments that many of you fantastic ladies are putting up with, I feel slightly ashamed that I am even posting this comment.

Thank you for reading this!x

Motherhubbard
Member

Re: aches and tiredness

I to was diagnosed last year had mx and immediate recon was put on letrozole 1st oct I now have spells when aches and pains are worse sometimes. Yesterday was really bad where I could not lift are on the right hand side even though cancer had been in my left. I had got a magnetic bracket on rig harm that helps and while out yesterday got a white ceramic one with the strongest magnets and when I got up this morning pain gone. Even if it is all in my mind I am keeping them both on now
Hope that helps. Bev
kiwi14
Member

Re: aches and tiredness

Hi everyone, I was diagnosed with breast cancer in september last year, had a lumpectomy followed by radiotherapy,then commenced on Letrozole,I have been getting terrible upper arm pain, weakness in both my wrists and aching thumbs, I thought I was going mad didnt think it was the Letrozole as I expected generalised muscle pain,I have taken Letrozole for eight months now and feel exhausted by this awful painfull/weakness in my arms its so draining, but I feel so much better reading everyone else has the same problems,I am not alone ......I feel I now have the strength to keep going, just need to get some regular simple analgesia to get me through and get back to enjoying my life and not let breast cancer or its treatment get in my way.

thank you to everyone for the discussions,I will continue to read and join in and hopefully we can offer each and everyone of us support         

skinnyminx
Member

Re: aches and tiredness

Thank you Lucy at BCC - the voice of reason.

 

Just to add my experience to this...

 

I had surgery, chemo, rads and I've now been on Letrozole for over 4 years (also take calcium/Vit D, thought this was standard for anyone on AI?).  The joint aches come and go, they were never terrible but are definitely a lot milder when they do occur these days.

 

My debilitating fatigue levels haven't changed though.  The only way I could combat this (apart from stopping the medication) was to make major changes to my lifestyle, principally changing my job.  Thankfully, I've found a less strenuous, part-time job, near home which I love.  Still get fatigued occasionally and can definitely do less and have to pace myself and plan my time so I can rest, compared to before I was on AI.

 

I was told at my most recent oncology review that I will stay on AI for 5 years and then switch to Tamoxifen (because no reliable research completed yet on pros/cons of taking on AI for 10 years).  I have to say I am fervently hoping the fatigue fades away once I change meds next Spring.

Lucy_BCC
Member

Re: aches and tiredness

Hi all
I would suggest calling our helpliners to talk through the issues discussed here, as with any supplements/therapies it is advisable to seek advice from your oncology team prior to commencing any treatments which have not been prescribed for you

Lines are open weekdays 9-5 and Saturdays 10-2 on 0808 800 6000

Best wishes
Lucy BCC

Kess
Member

Re: aches and tiredness

I think you need to be careful with apricot kernels. I have read they also can contain high levels of cyanide so you can take too many. might be worth checking with the helpline or your doctor before you start them.
Seashell60
Member

Re: aches and tiredness

Hi Neezy,

I have never heard of apricot kernels, where can i get some? If someone recommends something i always like to try  it for myself. Belly dancing sounds great, but i would need to get rid of my belly first!!! since taking the hormone tablets i have noticed a considerable weight gain but as i have finally started getting my appetite and sense of taste back i know i am eating either too much or the wrong stuff!

I would have never believed it if someone told me how it feels to your  body and mind having treatment, but i agree 100% your body takes such a lot and still manages to bounce back maybe not quite as it was or as quickly! We have a Holland and Barrett here would they have the kernels in there or maybe online i will get some as soon as!!

Cheers, Michele x

neezy
Member

Re: aches and tiredness

Hi Michele

i take apricot kernels every day as they are supposed to kill off any cancer cells but amazingly they have helped my aching joints alot! my knees are a bit stiff but much better than they was! I also take glucosamine and I teach belly dancing which has kept me supple!

I finished my treatments last year and sometimes it feels like your body has been through such a hammering Im now waiting to have my other breast removed and both reconstructed.

best wishes

Neezy x

Seashell60
Member

Re: aches and tiredness

Hello everyone, having read your posts i feel much more relaxed (if you can after all we have been through!) about all the aches and pains we get from the drugs we have to take. Rosiecliff, i also had ops, chemo. radio and then hormone tablets (started treatment nov 2012 up until starting Anastrozole last Sept 2013). The most noticeable thing for me is very painful small joints, especially my left elbow (same side as surgery) and thumbs! Sometimes when i have been sat down awhile and try and get up and walk i must look like a hundred year old shuffling along! I was interested in what you said about the painful feet (i also suffer badly with Neuropathy from the Taxotere (i had 3 cycles last April/May/June) and have had a Doppler scan/tablets to try and help but nothings changed! I would love to know about the sandals from Sketchers you mentioned - where can i find them? ~I also dont bother much with painkillers - take enough pills! I have been dithering about buying some Cod Liver Capsules (i used to take them) and the Glucosamine (my mum swears by them!). I wasnt sure what supplements we are allowed to take? I would also love to go to a class for some gentle exercise (either yoga or even water-based exercise). Cheeers, Michele x

rosiecliff
Member

Re: aches and tiredness

I had a mastectomy last March and followed this with chemotherapy and radiotherapy as preventative treatment which all finished in November 2013.

Since then I have been taking Letrozole (7 months) - the side effects are very similar to those mentioned in this thread. No tiredness at all, managing to do even more than before diagnosis. However the aching joints are the worse thing together with painful feet from the neuropathy caused by the Taxotere I took from April - June last year.

I have very painful hands when I wake but manage to ease these off by lots of hand and finger stretches then and at other times during the day. My knees are aching more than before and I get pains in my right hip which I never had before.

Great shoes for the painful feet are the strappy sandals by Sketchers - so comfy. Also some trainers by Hotters.

Have not gone the painkiller route as yet, going to see what the next 2 months bring as I have an oncology appt in August.

I am taking vitamin D3, Cod Liver Oil capsules and Glucosamine Sulphate, so hopefully these are helping.

Yoga definitely helps me and generally keeping active too.

Just hoping the body gets used to it and the symptoms subside in time.

Lucy_BCC
Member

Re: aches and tiredness

Hi sal343 and welcome to the BCC forums

Our helpliners are on hand with further support for you on 0808 800 6000 so please feel free to call to talk through the issues you are experiencing, lines are open weekdays 9-5 and Saturday 10-2

Take care
Lucy BCC

Sal343
Member

Re: aches and tiredness

Had mastectomy and chemo with herceptin. Finished 12/12. Have had increased tiredness and pain in shoulder, ribs ankles, along with neuropathy. Not on any meds. Some nausea when I try to take meds. Would appreciate any information or suggestions. Seems to get worse as time goes on.
Dogmad84
Member

Re: aches and tiredness

Thank you, Pnky3- I had no idea about the stomach issues with Naproxen, and so will mention it when I next see my GP. 

pinky3
Member

Re: aches and tiredness

Hello Dogmad,

I was just reading this thread and noticed you mentioned taking naproxen. I have a lot of experience with this drug. It is an anti inflammatory and does not come with addiction issues. However it can be very harsh on your stomach especially if you take it long term.  I don't know if you have been prescribed a stomach protector to take alongside it, if not and you are going to be taking it for more than a couple of weeks, I would certainly look into it.

Hope this information is of some use to you or indeed to anyone else in a similar situation. It must be great to be pain free after such a long time.

Best wishes

Dogmad84
Member

Re: aches and tiredness

Hello, Melena- I thought I would bob into say I have been on Letrozole for  two years, and although the joint pains lessened slightly after the first six months, they were still pretty debilitating, and I was also experiencing the loss of strength in the upper arms that other ladies have talked about.

To add insult to injury, the Letrozole has also caused bone thinning in my left femur, and so I also have to take Alendonic Acid as a weekly dose, to stop this problem progressing.  Alendronic Acid also causes joint pains, and I have recently very reluctantly started to take a strong painkiller twice a day called Naproxen. Basically, it has given me back the ability to go about normal things once more- even running up and down the stairs!!  Before this, the pain was so bad that it almost crippled me, and some days I was seized up completely. 

I was reluctant to take a strong, and potentially addictive, painkiller, but it really was the choice between the devil and the deep blue sea, and it  has given me back a normal, pain free life.

You also mentioned fatigue- until recently, I needed an afternoon nap to get through the day, as the exhaustion would just come down and envelope me totally, and it was impossible to fight against when it happened.  It has only recently got better, but I still have to pace myself carefully, two years post chemo.

It is very difficult with these nasty SE, but Letrozole is a really effective drug in hopefully keeping us all well.  Take care.

 

Sal60
Member

Re: aches and tiredness

As of Easter I have stopped taking the Aromatase Inhibitors. The side effects were so debilitating they were making normal life very difficult.

Letrozole was giving me muscle weakness in my upper arms; so bad that I couldn't knit more than two rows before having to stop.  I love knitting so that was very distressing. I also sing with a big band and found that holding the microphone was becoming more and more difficult. It weighed a ton!  Just a couple of the delightful side effects, there were many others even on half a tablet.

Having weighed up the pros & cons with my oncologist I've decided that quality of life is more important.  So for now I'm trying to get the stuff out of my system. Apparently it can take four to six weeks to get rid of it.

Might try again on half a tablet but I suspect it will be the same story.

 

The oncologist did sympathise with the dosage problem i.e. why a small eight stone woman gets the same dose as a large twelve stone one.  He didn't think I was crazy to try half a tablet especially as there were still side effects so something must have been happening!

Naturegirl15
Member

Re: aches and tiredness

Glad to read these comments. Have been taking Anastrozol for 4 months now and have noticed I often ache all over and this makes me walk like a doddery old person. Just noticed shooting pains down my arms if I lift them above shoulder level. One more recent pain is my thumb joint feeling like it is bruised all the time and affecting my grip. It doesn't seem to be going away, so thought it is possible side effects of tablets or rheumatism. Also hands and fingers feeling puffy. Now reading this thread I feel less worried and may mention them at my check up or try some of your suggestions on easing them.

Melena
Member

Re: aches and tiredness

It is good to read all your replies and know I am not alone.I am seven months into taking Letrozole now. The fatigue is not as bad as it was. I find I feel worse when the sun isn't shining and the weather is bad so now it is getting better I hope to feel better. I still get tired easily when doing things but have learnt to pace myself.

My main concern at the moment is aching knees and my feet hurt when I walk. I am trying to find comfortable shoes that I can wear and that will help me.

I hope you are all picking up now and are managing to combat your aches and fatigue.

xxx

Sal60
Member

Re Aromatase Inhibitors & side effects for ME sufferers.

After surgery (WLE and SLN removal) and 15 radiotherapy sessions I'm now taking Letrozole, on my fifth week. 

I already have Chronic Fatigue Syndrome, ME, Post Viral Fatigue Syndrome...(pick a title! the medical profession don't seem to differentiate) so all you ladies feeling fatigue have my sympathy and welcome to my world.  I tried 14weeks on Anastrazole, it was awful and made a lot of my CFS symptoms worse; mainly joint & back pain, fybromyalgia and Carpal Tunnel Syndrome symptoms in both hands which woke me at night, not to mention the hot sweats.  I've been through one menopause two is overdoing it.

 

When I contacted my BCN she told me that "We thought this might happen".  

I went back to the hospital & saw yet another doctor (I haven't seen the same one twice) he seemed rather sceptical and said that "we can try you on Letrozole but if that fails then there's only Tamoxifen left".  Is this true?  Are there no other options?  I must do some research.

The Letrozole are making me feel even more fatigued and now I feel dizzy and nauseous as well. Mentally I'm not so sharp either.  On a positive note the carpal tunnel symptoms have lessened and joint pain is less.

I have an appointment to see how I'm doing in a week or so. 

 

At this rate I won't last five months on these things never mind five years.  Quality of life is important; I don't wish to spend five years on the sofa!

 

 

 

 

 

Penny47
Member

Re: aches and tiredness

Sorry to hog this but I spoke to the BCN yesterday.  Apparently Anastrazole is more likely to affect the smaller joints eg ankles, wrists, fingers, NOT the hips.  So my guess is that chemo has struck again.  Waiting to see GP.

Penny47
Member

Re: aches and tiredness

I spoke too soon.  I had really bad throbbing lower back pain with shooting pains down both legs, like Sciatica only in stereo.  And nothing touched it, not even NSAIDS and Panadol.  This lasted for two nights and went away as suddenly as it came on, leaving me wondering if it was anastrazole, or a recurrence of the SE's from Taxotere, or whether it's related to my current mission to increase my range of exercising.  It doesn't feel like the pain from osteoarthritis which usually builds up slowly and affects one side worse than the other.   Any ideas?

Penny47
Member

Re: aches and tiredness

I was on Letrozole from dx in Nov 2012 to starting chemo in May 2013- just under 6 months.  I had aches and pains but then I do have osteoarthritis which has similar symptoms.  I take NSAIDS and paracetamol intermittently to control the pain anyway.  The Letrozole tablets did not do their job and I had to have chemo, mx and RT with a good result.  They put me on Anastrozole in January after my RT was over. 

 

So far I am amazed by how much more energy I have than I had on Letrozole. I can cope without daily naps, although weekly ones are very welcome!  Also, looking at photos of me taken last year, I see that not only did I have a steady dripping of hair loss (not the dramatic sort I had with Chemo) but the remaining hair was really dry and frizzy.  Can't comment on Anastrozole's effect on my hair as after chemo my hair was different - as so often happens - and I can't tell!

 

The lesson I am learning is that while I do still have to pace myself- one should after chemo!- there is a pleasant contrast here with Letrozole in terms of overall condition and energy.  Also it is, I believe, worth asking the GP to alter the manufacturer as apparently SE's vary from maker to maker. 

drdspg
Member

Re: aches and tiredness

I have been taking Letrazole for eight months and I still get aches and pains most days. They do wax and wane, some days being much worse than others. I find that I get exhausted sooner , more quickly and after less exertion than before and take much longer to recover. I am not yet back to work but when I do return it will have to be part time. I find it difficult as I look normal and don't want people to think I'm faking it but also find myself needing to explain it to people, hoping they will believe me. Research is going on looking at the benefit of taking aromatase inhibitors for 10 years, they are trialling this I think. I wouldn't be surprised if this does happen at some point.however, I would far rather have the aches and pains and have my risk of recurrence reduced than not take it.
All in all I find the best plan is too try to pace myself. I have a close friend who has chronic fatigue syndrome and have learned a lot about managing my own tiredness, aches and pains from her.

Motherhubbard
Member

Re: aches and tiredness

I had my op and reconstruction at the end of aug and thankfully did not have to have chemo or radiotherapy. I started letrozole in the middle of sept and noticed straight away the aches and pains. I went to my doctor to ask whether I could take calcium and if so what strength etc. She prescribed calcium with vit d called calicoes and I can take two a day. I don't take everyday but I am able to get out of bed normally and also my feet are not aching so worth talking to doctor. Also going to have a bone density test on next check up at breast unit end of march. I have now been on letrozole since five months and touch wood the last couple of weeks the aches, pains and feeling of tiring for ever tidy is beginning to go. I to went back to work full time on the 1st oct and I now know that was far to early. I did not give myself enough time to allow what had happened. To sink in. Hope this helps , Bev
lindancer
Member

Re: aches and tiredness

I have just joined the group as I wanted to find out if anyone else was feeling as exhausted as I am after taking leprozole for about 3 months,I was also wondering how long it goes on for?cate

Melena
Member

Re: aches and tiredness

Thanks for relying Angiepops. I think I do too much sometimes and will have to realise that I can't do as much. I have a good day and decide to do everything at once then in the afternoon I feel so weary.

I was pleased with myself today though I managed a longer walk which took me to the beach. I really enjoyed it. I am going to bulid up slowly.

Good luck to you

angiepops
Member

Re: aches and tiredness

hi melena

i had all the same as you except mine finished in september. i get the same aches and pains but they are getting less. i had chest pains too which alarmed the doctor when i went and he was convinced i had a clot but it wasnt. ive also started to get some fluid build up in my op arm and because i'm back at work full time its not going away. ive had many lectures about doing too much and i'm not ready to do all the things i used to do but i just carried on. now i'm beginning to think they are right and i should slow down a bit, still recovering.

maybe we are just expecting too much too soon.

hope this helps, i'm in the same boat

angie xx

JustBee
Member

Re: aches and tiredness

I finished the same treatment in Jan2013 and a year on I still have joint pain and stiffness. I think it is the letrozole but it's a necessary part of out treatment. I was really fatigued for months afterwards and felt depressed about not getting back to normal but that fatigue lifted over the last couple of months. Be kind to yourself Melina because we aren't all able to bounce back like we imagine.
Melena
Member

aches and tiredness

I had a mastectomy and lymphnodes removal in June last year. I had chemo and RADs. all treatment finished in December. I am now on Letrozole.

I easily get tired also after walking my feet ache until I rest them.

I also am still getting aches in the chest area mainly when I have been over doing it.

Does anyone else get aches and pains and how long does it go on for?