Is it just me, or do others suffer with no help too?

I’m sorry for your pain. How frustrating. Not sure why they are saying that. My oncologist told me chemo can cause neuropathy and because I already have a hereditary neuropathy I should not take chemo or I’ll be left in pain forever. I had a colleague who was left with excruciating migraines as a result of chemo. I have had doctors outright dismiss my adverse reaction reports for other types of meds when they occurred immediately after taking the meds and continued and even when those reactions were listed in the manufacturer’s own literature so I understand how frustrating that is. Prayers that your pain will improve.

I'm so sorry for what you've been going through. Does your clinic/hospital have palliative care support? If so, you can ask for a referral to them. They are usually well equipped in pain management.
If it's available, you can ask to connect with a patient "navigator". Sometimes they have resources, too.
Hoping for an easy solution to give you a complete healing.

I had severe pain from Letrozole but exemestane is so much better. I have arthritis anyway; lower back, hands, hip, knee, so I’m careful with energy & activities. Now, 2yrs in, I have bone density issues and zometa infusions started. THAT caused severe pain for a week. Is your bone density ok?

Hi! @blondin925 :

I am so sorry for all you've been though:( I truly admire your courage and perseverance to endure this severe pain for 5 years to complete the AI treatment fighting the disease of breast cancer! Unfortunately, some physicians are not as compassionate as they should be -- some are outright being rude -- based on my own personal experience. Now that you've completed 5 years of taking Exemestane, hopefully your excruciating pain shall be reduced day by day; for you no longer need to take any AI medications, right?

Best wishes for you striving forward with better health, less pain and peace of mind!

I am no longer on them. I stopped taking them at the end of July. There has been no changes in my pain. That is what i want these people to address, but they said the neuropathy is a figment of my imagination pretty much. They told me i have arthritis and I should go to a pain clinic. I went to a arthritis specialist during all this for pain. They told me i don't have arthritis and kicked me to the curb. I also have all the bone pain to go with the neuropathy, since that med sucks the life out of womens bones too. Like I said, I am SOL. Thanks for your kindness though.

I did the zometa also. It helps with bone density but not the nerve pain at
all. Gabapentin doesn't really do much either Unfortunately. Thanks for
responding

Thank you. I'm so sorry for your pain and their lack of concern for you also. I am a nurse, and all this just pisses me off with our health care providers. It's good in ways to know I'm not the only one left out in the breeze to just "deal with it" . I hope someday we are both acknowledged instead of being pushed out the door. Thank you, and I will pray for pain relief for you and I both.

I've found it sometimes can be difficult to get help with pain that occurred from treatment such as surgery. Perhaps doctors don't want to feel they've caused harm. They often don't want to deal with it. My best experiences treating my chronic pain of 50 years was to go outside of the initial medical situation.
I went to a rehabilitation specialist (MD) who helped me immensely. She referred me to to a rolpher who has worked on me now for 20 years. The rolpher got me into different kinds of PT (my PCP was supportive with referral). I'm not suggesting these things specifically, as my pain is odd and unusual. The rehab doctor said something wonderful: I don't know exactly what is causing your pain but I think I know some things that will help.
I think in your case I'd go straight to palliative care associated with hospital/cancer center where you were treated. They should prescribe for pain management, and meet with you in an ongoing manner. Some centers offer therapy and chaplains if you feeling talking it out will give you some support. In my experience pain clinics can be a bit programatic--I'd get palliative care first and then go on from there. It was hard for me to accept that essentially I was on my own in terms of having to deal with the pain. I regret that I spent my 30s and 40s without asking for support. I know it sounds difficult to have to deal with this--so I hope you find at least one supportive practitioner who can help you make a plan.

I am a nurse also. This is so troubling. I took my first pill of Exemestane today and it took a lot of courage to do that. Anastrazole was terrible for me. Will this be better? It is for some people and I have some hope for that it will be OK. I am 84. Is it worth it if I end up with more side effects? Am getting back with the oncologist to discuss in about a month, sooner if I have problems.

I was started on arimidex and the pain was so bad they put me on exemestane. The exemestane was still pain inducing but the lesser of 2 evils. I am only 55yrs old. I am told not everyone has these side effects, they should be temporary and subside for most patients ending their treatment, but for a small percentage I guess, suffering is the new normal. I don't want to scare people from taking the treatment. We got to do it, I just want doctors to listen to the real world effects from the patients that do end up suffering. Please try not to be worried. Take the med and go from there. Be your own best advocate.