Muscle Pain

[JoolzD]

Hi Everyone,

I am new here. I was diagnosed last November with secondary breast cancer, a large ovarian tumour, multiple brain tumours and bone lesions. Fun times.

I have been on Ibrance since December 2019 and also Ibrance for the same period. In the last 8 weeks ish I have developed severe muscle pain, specifically in my left shoulder, and left side of neck . Weirdly, I also get pins and needles down my left arm. Anyone experienced similar? Or do you think this is due to me sitting and sewing a lot? It’s difficult to separate out what might be medication side effects and lifestyle! Thanks for any suggestions.

[Hidden]

Hi Joolz,

Welcome to this site! I'm not on ibrance, so I can't comment on any possible side effects from that particular drug. Are you also taking another aromatase inhibitor, such as letrozole? That can cause muscle pain and peripheral neuropathy. I would talk to your oncologist to see if you can get to the bottom of things.

Sophie

[JoolzD in reply to Hidden]

Hi SophSP

Thnka for replying. Yes I am also taking Letrozole. I am seeing the oncologist this week. Hopefully he will know about this side effect. Thank you.

[Hidden in reply to JoolzD]

You're welcome. I hope you get some answers when you see your oncologist.

[breezie]

Hi Joolz, I was on Letrozole and for a week or so had a stiff neck but I think it was more lifestyle than side effects because it went away. I do quite a lot of sewing too so it could be that. Hopefully it’s nothing to worry about. I found an Ibuprofen gel helped. Best wishes x

[JoolzD in reply to breezie]

Thanks Breezie for replyingand for your suggestion. I appreciate it. I’d love to use something like that gel, but because I take aspirin to thin my blood, I can’t take anything ibuprofen related. I was hoping it would just go away but has just got worse. It’s always so hard to know whether it is lifestyle.

[breezie in reply to JoolzD]

Some of the Deep Heat products are non-medicinal and may give some relief?

[JoolzD in reply to breezie]

Ah thanks Breezie. I didn’t know that. Will look online now as I really am in a lot of pain these days. That’s great thank you.

[Barbteeth]

Try soaking in the bath with Epsom salts...the magnesium may help

Barb xx

[JoolzD in reply to Barbteeth]

It’s such a tempting idea. I am sorry to say I only have a shower ... such a nuisance.

I do find relief with warm water from the shower though.

[Barbteeth in reply to JoolzD]

Oh that’s a shame...I love baths

Barb xx

[Maludagui in reply to JoolzD]

Hi. Epson Salt have oil for your body. I saw at Walmart

[JoolzD in reply to Maludagui]

Thanks I will try it.

[MyMiracle13]

Hello JoolzD. I had (still have) the same symptoms as you so please read the detailed post which I will share to all for their information.

[JoolzD in reply to MyMiracle13]

Brilliant. Thank you.

I am so sorry to hear you have the same symptoms. Looking forward to the details. Really grateful.

[MyMiracle13 in reply to JoolzD]

Hi again. You mentioned you had multiple brain tumors. How were they treated. Did you have gamma knife surgery or any kind of radiation treatment? Any information would be great as I have just found out that I have 3 brain lesions and would like to know your experiences. Oh I am on Ibrance/Faslodex but changed that to Letrozole for 3 months but that’s another story.

[JoolzD in reply to MyMiracle13]

Hi. I had just radiotherapy as apparently I had scores and scores of tumours. Too many to cut out, they said, amd too many to count!! Not exactly reassuring! However they have apparently reduced in number due to the radiotherapy and medication. So I am more optimistic about having a bit more time.

[MyMiracle13 in reply to JoolzD]

Thanks JoolzD. I’m sure I’m going that route for my brain Mets - radiation. I just don’t know what kind of radiation yet

[JoolzD in reply to MyMiracle13]

The radiation treatment was fine. I did lose my hair but was not too worried to be honest. The fatigue was the main side effect for me. It came a month after the radiation was finished. I am mentioning it as it quite shocked me as I was not expecting it.

[MyMiracle13 in reply to JoolzD]

I’ve heard a lot of ladies here complain about fatigue after radiation but I didn’t realize that the onset of fatigue could start a month after the radiation. Thanks for sharing this. I will bear it in mind.

[Beryl71]

I am on Ibrance and letrozole, they keep checking if I have joint pain so imagine these must be expected effects. Good luck.

[JoolzD]

Ah! That’s interesting Beryl! I don’t get asked that. I will definitely raise it this week.

[Amm1]

Hi

It might be worth getting your neck checked, I have similar pain and it’s the nerves are compressed where they come from the neck to the arm. Have been going to physio and it’s helped a lot. I’m on Ibrance and letrozole but have been told it’s not related- just degeneration. I was referred to orthopaedics and physio in February and am still waiting 🙄I ended up going privately to physio. Hope you get it sorted soon.

Anne

[JoolzD in reply to Amm1]

Sash that is v interesting. I have just managed to make an appointment with a private physio. So will report back. I am really hoping for a magic solution!!

[JoolzD]

Sorry- dunno why my iPad decided to call you Sash! I meant Amm1!

[Amm1]

I had to get a MRI to confirm the diagnosis and physio she she can’t fix it but it’s definitely much better now, best of luck.

[Kdiet]

I take Zometa every three months. It re@lit helps.

[JoolzD in reply to Kdiet]

Interesting. Is this for bones?

[Kdiet in reply to JoolzD]

Yes. Helps to counteract the Letrozole effect on bones as well as the bones that have been effected by cancer. It is a key part of my treatment. I take with Tylenol and a Claritin. They administer it slowly. For 48 hours I feel a little fluish but then I feel so much better.

[Maludagui]

Hi 👋 I am on Ibrance Letrozole for 22 months I have only bones metástasis and yes I have pain at different place of my body. I take Tylenol o ibuprofeno when I need I recommended you ask your doctors what is the better way for quality life 😍

[JoolzD in reply to Maludagui]

Yes I will, thanks. That whole thing around better quality of life is important.

[TwithBC]

JoolzD I assume you mean letrozole and Ibrance? I have been in Letrozole for two years and I have had shoulder pain and neck pain so severe that I was sure my cancer was ravaging my body....I had it very severe around the same amount of months in as your experiencing—7-10 months....scams only showed improvements not progressions even with the STRANGEST and very sever muscle and bone pains that would pop up and stay for a period of time then leave and pop up elsewhere. Oh and yes the numb arm/carpal tunnel pains and pins/needles ... all of that. It comes and goes and moves to different areas of body and some periods are worse than others. I’m 49, diagnosed stage 4 bone mets at 46...and have at times felt 79-85. I am hoping and praying your pains are all about the medication and that the it is battling the cancer inside and that you soon grow accustom you the aches and pains associated with the new normal!

❤️Tracy

[JoolzD]

Thanks Tracy for sharing your experiences. It sounds really similar to me. Has your oncologist been any help with painkiller suggestions?

[mariootsi]

Welcome to this site. I was on letrozole for almost 5yrs. prior to mbc diagnosis. I found it to be diffficult to tolerate. I experienced stiffness, muscle pain and and tingling. Hated it. Maybe your doc can give you a different med that will cause you less side effects.

[JoolzD in reply to mariootsi]

If I can’t get any relief from the symptoms after following advice here, I think you are right that I need to ask about alternatives. It’s weird as I did take Letrozole when I had cancer first time round. I used to suffer hot flushes and sleeplessness at that time but no muscle pain . This is far worse to be honest.

[hdhonda]

Welcome to the family. Mine went from breast to lungs. I take Ibrance/Letrozole. I have some aching but attribute it to old age. I am 74 - quite a bit younger than you but who knows. Best wishes for relief. Blessings Hannah

[JoolzD]

Thanks for the welcome! It is hard isn’t it, not knowing what is age related wear and tear and what is the cancer?

I am 61 now, so not a spring chicken, but I have tried to keep fit over the years. But I think this whole COVID lockdown has meant it has been hard to keep active and so my body is cracking up!!

[Hidden]

Hi, I think Ibrance causes a lot of muscle pain. Alongside Letrozole you feel yuk. I started to crotchet a blanket during lockdown now I have had to stop as my right arm and wrist swell considerably. Also my shoulder feels bruised all the time. I sometimes have pins and needles in my arms and lots of cramp in my legs during the night.

What a sorry state of affairs really. I hope this info helps a little. Let us know how you get on with your Oncologist.

Cheryl

[JoolzD]

Thanks very much for sharing all that Cheryl. It is reassuring to know that what I thought were my weird quirks are actually proper symptoms that others have too.

I am really looking forward to seeing the Oncologist (actually talking on the phone), and seeing if he can prescribe anything to help.

[lynnhbtb]

Sorry you're on the site, but nice to hear from you. I was on Ibrance for about 6 months until it stopped working for me. I hope that doesn't happen to you.

I didn't have any side effects like that from Ibrance. I've had it from radiation and neuropathy from chemotherapy though.

Hope you get it figured out.

[JoolzD in reply to lynnhbtb]

Thanks Lynn. I am sorry that you are here too. But it’s a good group of people, definitely. It’s possib;e that my pain is also from radiation. When I had Letrozole before I had no muscle pain. So I guess it could be caused by radiation too.

[JoolzD]

Thanks everyone for your kind and helpful responses to my question. The progress is that;

1. I am going too have a CT scan of my back.

2. I am going to a physiotherapist.

3. I have tried using Deep Heat as suggested on here. I have found it pretty helpful, so Thanks for the suggestion.

Joolz