Post Mastectomy Pain Syndrome (PMPS)
Comments
-
Sentinal Node Biopsy=SNB. I didn't get LE, fortunately, but that burning pain was awful. I really felt depressed and discouraged. I am sorry Maggie that you had your accident that sent you back to square one which is not a nice place, but it may even heal faster than two years this time around. I also did those exercises where you push your arms backwards...it REALLY helps get rid of the tightness although it hurst at first. Tightness if often scar tissue developing. Your surgery this time, wasn't so involved. Hopefully. I also massaged those areas with good old A535, took my tylenol 8 hour and also took a 100B complex vitamin.....vitamin B is good for nerves. Wishing you a speedy recovery Maggie. (I also walk and for those two years, my arm felt better after walking)?
0 -
Hi everyone. I was wondering if anybody has been helped by taking Neurontin? My doctor prescribed it and I'll be seeing a pain specialist soon.
I just wondered if it helps much...
Thanks0 -
Violet, I tried Neurontin (gabapentin) and it did not help, but I had bad SEs from it, so it might have worked if I could have tolerated it. It made my brain very foggy, forgetful, unable to remember words, had trouble giving lectures (my job!), etc. Many people have had very good relief with it. I think it is better for diabetic neuropathy, but it is one of the many drugs in the tool box for dealing with neuropathic pain, and again, it works well for many. Here's hoping it works for you! Keep us posted!
0 -
Linda,
That's the thing I'm afraid to try it because of the side effects. I don't need any brain fog etc that's for sure.0 -
I wonder if L-Glutamine might help...Many women take this to prevent nerve damage during chemo. Maybe it could also repair nerve damage...
0 -
MakingWay:
Thanks for the suggestion. Before I go searching the site does anyone know if there's a specific thread on Neurontin or the generic name of it?
Thank you,
Violet0 -
the generic name is or starts with gaba... CRS
went to my obgyns today. wouldn't prescirbe the topical cream for pain since it had ketamine in it. refered me to my pS. wimp. didn't even bother to ask for scream cream
0 -
Neurontin = gabapentin
Fran, you need to see a pain specialist, not obeying. They are good for a very limited area of medical practice (but some of them think they know everything!). Find a palliative care specialist, even better than pain management.0 -
So..
has Gabapentin worked for anyone else here?
SE's?0 -
I have been on Gabapentin since 2011. I tried going off it once back then and holy crap did the pain come back. I have not been off it since. I may or may not be having any cognitive problems from it. It is hard to tell because I already had a brain condition (not cancerous) that causes cognitive impairments.
I also get Lidocaine IV infusions every 8.5 to 9 weeks. Those are very helpful. I had to hold off and go quite a ways past the due date for one last June and could I ever tell the difference. I have chatted with a few women on here and it seems that their pain doctors don't like to use that. Yes it could be a dangerous, but there is no way I could live with out.
On July 31,2013, I had to have a thoractomy to remove a lung mass. OMG!!! Most painful surgery ever. I guess it is even more painful than heart surgery. The surgeon had to cut through muscles, ligaments, and cut a rib to get at the mass.
One more even better (very sarcastic better) side effect is MORE STINKING NERVE DAMAGE PAIN. The cardio-thoracic surgeon told me I would have more of it on the side of the chest and downwards towards the belly.
Well, it is back from under the scar from the mastectomy, down my belly, and the side of my chest worse again. So here I go again. It was calming down SOME from 1/11/11 and I am having a horrible, severe pain again. The only positive is that I have a pain doctor in place with pain treatments already!
As I sit here writing this, I realize that I got LESS information about what to do with it than I did with breast cancer surgeon. I feel so bad for his other patients that have this. I think I need to write him a letter and let him know that for future patients should be better instructed in what to look for, and that there are medications and treatments for it. I would hate for them to get the dry, noninformational, yeah yeah, we know about it.
Lyrica and Cymbalta are taken for neuropathy as well. Many diabetics take Lyrica for their neuropathy.
0 -
Thanks, Cinnamon!
0 -
Gabapentin/neurontin did not help me much,it . Did make me really sleepy all the time. My Pcp found an article saying that it works well for diabetics, but that cymbalta works better for cipn, so I switched,it didn't work miracles, but it works better than anything else I've tried and has less side effects too. That said, it helps mostly with the neuropathy in my feet, and a little with the fibro type pain.
0 -
Linda,
Does Cymbalta have very many SE's? Does it NOT have the awful fatigue/exhaustion side effect for you?
Thanks!
Violet0 -
Not as bad as the other drugs (effexor, Nortriptyline, amitriptyline, gabapentin) did. So less fatigued on the whole. And less pain. I do still need the oxycodone though and it all makes it mostly tolerable. :-)
0 -
Hi ALL. Well, I guess I REALLY belong in this thread now...
Saw a Pain Management Specialist yesterday (Private Practice/Board Cert.) for my PMPS..
OMG! It was like being in a prison!!! Got drug tested first time EVER! AND, had to sign my life away to work w the lady!!!
Is this normal?
More later...I'm still tripping out on the whole weird experience. It was rather traumatizing. I guess they have to be careful and must deal w tons of drug addicts...need cover their butt, but still...was weird...
Anyone?
Thanks...
Violet0 -
Violet, I had this same experience when my PCP, MO and BS referred me to the Pain & Symptom management clinic. I was told by the receptionist to be there about half an hour early for urine drug test. I said I was not going to do that until I knew if I wanted to become a patient of the provider. We were at an impasse. I know the drug testing is required in some pain clinics, to be sure you are actually taking the drugs you are supposed to be taking. Well, I didn't really WANT more drugs anyway, so declined the referral.
I then fired my PCP, got a new PCP who is also palliative care. We have developed trust in each other without going the route of drug testing and signing contracts. I have also seen an interventional pain specialist who did nerve injection for the pain in my arm. None of these folks treat me like I am a drug seeker, drug abuser, or drug dealer trying to divert prescription drugs.
I am so sorry you had to go through this, especially without warning. I am pretty sure I would have refused the drug testing if I had shown up at the first clinic and been really angry at having wasted a trip in, so I am glad there was a warning from the scheduler. I did tell my providers about the policy and they just sort of blew it off. The thing is, I was just going for a consult to see if I even wanted to become a patient with this clinic, and I would have probably agreed to testing once we had a doctor/patient relationship established, but NO WAY was I going to do drug testing "for policy" reasons before I even MET the provider. To me, getting labs before you even interview a patient is borderline malpractice, and I told them so.0 -
Linda,
Thanks for replying. I didn't really care about drug test since I had nothing to hide, but I am so "green" new to this it was weird for me. I live in a very small county & this is the ONLY pain clinic so I'm sure this office gets 90% druggies.
I had been taking Norco only so far & I know it's not good to take it for so long at 20mg. every 4-6 hours. This new doc put me on VERY low dose Kamden? 10 mg /Morphine class 2 x day and told me I can take the Norco I have left (only 50 10mg. pills!) for break through pain. The idea is to lessen the amount of Norco. She also wants me to start the Neurontin the other doc. gave me. I'm really hesitating that cuz I'm worried about the fatigue/depression/blurry vision SE's. BUT they are starting it very low dose increasing it every 3days until I'm on 3 pulls a day...still low dose. BUT, I'm not starting it until AFTER the long weekend! Sigh...
So far, the Kamden is ok...but way too LOW of a dose. They purposely start u out low. What I did notice is that when I do need the Norco, I can get by w way less & less frequently...;) So that's good!
HOWEVER, there's no way I will have enough Norco for 30 damn days!!!!!!! ****The DEAL at this clinic is that you can ONLY get appointments & med changes/refills at the monthly next appointment! No exceptions. I'm sure this is to prevent druggies from trying to get early refills. So, I'll have to try and conserve Norco like crazy. Also, I had to sign agreement that I can only pick 1 pharmacy and only get pain meds from this one clinic.
Thing is the CVS I went to barely had enough 10 mg Kamden at their pharmacy cuz they carry the normal way higher doses--even the 30 mg they had had expired! Normal mg they carry are 60/100 mg. So, pharmacy said the clinic will have to call them ahead of time so they can ORDER the low dose next time.
Anyway, I'd love anyone's input/experience here. The doc. DID say/confirm I have PMPS/ nerve pain, so THAT is good. But, she isn't specialized in BC per se. She did mention trying Fentanyl patches later, methadone, and nerve blocks as options. What PISSED ME OFF though is she went on and on about patients such as myself w a history of depression/anxiety experience pain much more acutely and that I had to do my part--blah blah.
Anyway, I'll see how it goes...I tild her my concern of the Neurontin worsening depression & the fatgue issue...she daud its a small % the depression part...huge eyeroll...
OY!!!!!
Violet0 -
P.S. I DID go to pain management in Kaiser in 2006 after a car accident but it was within a hospital setting...no crazy rules...
0 -
Hi Violet,
I take Neurontin (Gabapentin) daily. 400 mg. in morning, 400 mg. at 4 pm and 600 mg. at night. YOu have to work up to it slowing using small doses because it does make you drowsy. But now I don't even notice any effects after taking it and I'm sensitive to medications. I also take Celebrex 200 mg. in am and 200 mg at 4 pm. If I forget the 4:00 doses, I notice it right away. it seems to work on the burning and also relieves pressure. Hope this helps.
Maggi
0 -
Magi,
Hi and thanks. Do you take any pain meds also? And does the Neurontin really help? Any blurred vision or depression from it?
Violet0 -
The compounded cream that works for me is Gaba 4% Keta 10% and lido 6% . It gives me no side effects and works right where I rub it.
0 -
Lovegolf, do you know what the cream base is? Mine was compounded in Lidoderm I think, and it took a long time to get it rubbed in.
0 -
I stumbled upon a site called uptodate.com which has an extensive NEWER & fabulous report on PMPS. I started reading it BUT you can only read part unless you join/have full access...very $$$$$ Damn it! Yet, there's much to be gleaned from reading the parts that ARE AVAILABLE. ..;)
*****Has anyone else seen this report/study/site?
Also, can someone direct me to a specific article that explains PMPS ...and that acknowledges its existence. ..without minimizing it or conveying it is an exception...(i.e. "in extreme cases narcotic pain meds are prescribed. ..")
Those "handouts" I heard about on this thread might be better than nothing, but they didn't impress me...and I feel they are lacking.
Does Sloan-Kettering have literature on PMPS? I know a few of you have spoken highly of their insight on PMPS & have even spoken to a few excellent docs on the phone from there... & other NHI hospitals.
Thanks! I'm TRYING to gather the best info. In print for my docs AND for family members. ..;)
Violet
Thanks!
Violet0 -
Violet, there is a Facebook page that was mentioned on this site and the ladies have a wealth of info. Here is the link
https://www.facebook.com/groups/265320350156856/?hc_location=stream
Lots of documents and research based info. I have learned so much. I think many of the ladies on this thread are on the Facebook page also.0 -
Janheart,
Thanks...link didn't go live in your post. ..I'll look for it in this thread.0 -
Can anyone point me to the thread # for FB link group?
Thanks!0 -
Sorry..... try...... Post Breast Therapy Pain Syndrome in the search box in Facebook.
0 -
-
Sorry that didnt work either
Post breast therapy pain syndrome. Is the name0 -
Hi Violet, I have been taking neurontin for several months and getting pain relief. I do find I am a bit of a dim bulb on it but it's better than how I was (a cranky bitch) when I was in pain. Today I am feeling the effects of Doing Too Much over the weekend so I have taken an extra dose.
0
