Jun 17, 2012 08:02PM keonghi wrote:
***BUMPING*** to see if anyone can help me please. Anyone know how to stop the pain in my arm?
Posted on: Jun 15, 2012 09:27PM, edited Jun 15, 2012 09:28PM by keonghi
I had 26 nodes removed on my right side when we found a "surprise" tumor on the prophylactic side of my BMX. It's been almost 2 weeks post op and my arm is killing me. Sharp, stabbing, stinging pain 24/7 all around my upper arm (especially inside upper arm and elbow).
Can anyone else relate? I started gabapentin yesterday but they only started me on !00mg a day. From past experience I know you have to taper up on this drug so until it is at full strength, does anyone know anything that stops this pain?
Thanks, KristiLog in to post a reply
Posts 1 - 30 (176 total)
Jun 17, 2012 08:02PM keonghi wrote:
***BUMPING*** to see if anyone can help me please. Anyone know how to stop the pain in my arm?
Jun 17, 2012 08:56PM mags20487 wrote:
Hi Kristi...I am your neighbor to the north. I am so sorry that you are in such pain. I am 10 months out from BMX and ALND on the left and my arm is still sore from time to time. Right now I am dealing with LE on that side so the arm tends to feel quite heavy and sore on the back side of the upper arm. If you continue to have pain you should call your doc and be evaluated. You may be getting swelling in the arm and possibly even LE. Look for a lymphedema specialist if your doctor does not have any good suggestions. You may want to try keeping the arm elevated whenever possible and drink lots of fluid to help facilitate the lymphs to move the fluid around. Sorry I could not be of more help
Jun 17, 2012 10:18PM keonghi wrote:
Thank you Maggie that helps. I see my BS tomorrow so hopefully I will get some relief.
Jun 17, 2012 10:55PM firstcall wrote:
Most people do fine starting with 300 mg a day of gabapentin, and you can double that to 300mg twice a day fairly soon if you tolerate the 300 mg dose. Usually within a week. Ask your doctor to advance you a little more rapidly on the gabapentin.
Jun 19, 2012 02:49AM LizinKS wrote:
While I had just two sentinal nodes removed, I had a lot of pain in my axillary area post surgery. It took about six weeks to resolve. The suggestions made by other posters are excellent.
Jun 19, 2012 10:42AM keonghi wrote:
Thanks all. Doc RX gabapentin (600mg day), hydrocodone, and physical therapy. I wish there was something topical to apply to my arm.
Jun 19, 2012 01:08PM maltomlin wrote:
Hi. I'm 4 years past surgery when I had 24 nodes removed. I can totally relate to how you are feeling and I'm sorry to say, that it was a couple of years before the pain was totally gone. It did lessen gradually but I worried about it for a long time. I took my grandkids tenpin bowling and was in tears from the pain (that was a couple of years post surgery).
Thankfully, it's now gone, although I'm still careful with that arm.
Just be sensible and careful, and you'll be fine, but it does take a while.
Jun 19, 2012 04:59PM bluepearl wrote:
I understand the gabapentin works best at lower doses. Check on that one. I am on a low dose of citalopram and anyone I know that's on it, often go off it without any trouble....the tricyclic's like nortriptyline work the best but I got a rare side effect...always low dose, that is, below therapeutic effects for depression. I found ativan worked the best' 1 mg a day worked for the whole 24 hours...I did this for 8 months and had no trouble coming off...that is not to say other people wouldn't. That being said, I worried about the pain a lot but it does lessen...massage your arm, do the exercises and I applied A535 which I found helpful and an anti friction cream cuts the "sunburn" feeling too. Nerves take a long time to heal. But realize there's a light at the end of the tunnel...I even find now that when I do gardening etc. it even gets better rather than "nursing" it. Last year my garden went to weeds (and I was depressed) but this year, I've got it almost all cleaned up (we are talking about an acre here!) I just dug out roses and transplanted them, something I thought I could never do again this time last year! So cheer up and go forward...there's still a lot of living to do!!!!!
Jul 15, 2012 06:38PM lionessdoe wrote:I highly recommend Voltaren gel (script) for topical pain relief. I'm over four years out and the pain just keeps getting worse. Getting another evaluation for Radiation Induced brachial plexopathy and possibly RSD too! Really could use a definitive diagnosis. Apparently a Radiation Induced Brachial Plexopathy Surgeon's opinion is not good enough without medical evidence. That evidence can take 4 to 17 years to show up on an EMG. I think I'm developing White Lab Coat Syndrome!
Jul 20, 2012 06:50AM Ahowe wrote:
I just had a lumpectomy and axillary node dissection (16 lymph nodes removed) a week and a half ago. The sensitivity to my inner upper arm ( from my elbow to armpit) is pretty unbearable. I am unable to do exercises yet as I still have my drain in. And although there is discomfort with the drain it does not even compare to the sensitivity to my skin. My pain seems mostly topical. I have iced it, tried just putting cotton next the area but it feels so raw (it does not look raw just feels that way). Any type of touch is extremely uncomfortable.
Jul 20, 2012 07:52AM Cats134 wrote:
I'm 6 months out of my BMX and my underarm area is still sensitive and numb at the same time. Although my surgeon just wanted to do a SNB on my right side, I ended up losing 19 nodes on my right side and 9 on my left (nodes were entwined in breast tissue). It is just now that he is admitting that the horrific burning pain I experienced was due to the removal of the nodes. I think I was on percocet for 5 days, then asked for a renewal and was told to take motrin. I would sit on my bed, naked on top with my arms held out to my sides, crying. I swore I would find great big weeping blisters on my arms.
Since my surgery was in December, I bought extra large button down flannel shirts which I washed a few times so they were baby soft...everywhere except under my arms. It felt like I was wearing sandpaper. I started stealing my hubby's dress shirts. The fabric was much smoother and cooler to my skin.
Hang in there, the burning pain does subside.
Jul 20, 2012 07:29PM Ahowe wrote:
@Cats thank you for the words of encouragement. I think I will give the dress shirts a try. Someone else told me to try a rash guard shirt, so I may try to find that also. Not so sure that is going to work tho because it appears they are used in athletics and I am very large breasted so not sure I will be able to find one in my size. Looking very much forward to this being a thing of the past.
Jul 20, 2012 09:46PM , edited Jul 21, 2012 07:30AM by keonghi
Ahowe, I am about 7 weeks post op now and the pain is still there but I have found three things that have made the pain barable. 1) Neurogen cream (you can find it in the muscle soreness creams section of any drug store). It's a cream specifically for nerve pain (usually for diabetics who have nerve pain). It's $30 for a big tube but if you look in the diabetics section, you will find a tiny bottle so don't just look there. 2) my doctor put me on Gabapentin (on my request) a nerve pain blocker. Like I said it does completely numb it but at least I am not in tears everytime my t-shirt touches my skin. And, 3) I swim everyday for at least 30 minutes. This not only helps with my range of motion but being in the water is the ONLY time I am pain free. Good Luck!!
Jul 21, 2012 12:01AM Ahowe wrote:
Thank you for sharing what has worked for you. It is just so darn annoying. Since we really did not think that I would need an axillary dissection this has just completely caught me off guard. I had expected to be pretty much back to normal by now but I feel a far cry from that!
Jul 26, 2012 02:15PM Linda-n3 wrote:
Just wanted to echo some of the above. I am 10 months post bmx, lots of nodes taken from R side, had burning pain from inner elbow to axilla which turned out to be cording. Did lots of PT, tissue release, desensitization, etc. Now is a little better, but most days I still need a lidocaine patch on the back of my arm to keep the pain down and it also keeps sleeves from touching it.
The breast scars are also very sensitive, burning off & on most of the day, sometimes better by wearing snug prostheses, other times just want to be in very loose soft shirts. I can't really predict from one day to the next how it will be, just trying to "roll with it".
My mother is an 18-year survivor, and she said she also had the hypersentitivity/pain in the back of the arm from the ALND, and it did eventually resolve, maybe a couple of years. She is one tough cookie, not a complainer, so she probably put up with it a lot longer than she admits. Me, not so tough, and a LOT whinier!!!!
A note on the various drugs: there are lots of them out there, some are helpful for some patients, not for others; some have tolerable SEs for some patients, and not for others; some are hard to come off of, some have drug-drug interactions (especially with tamoxifen), but mostly you will not know if one will work for you unless you try it. I have tried the gabapentin, cymbalta, lyrica, and several others, all of which have been shown in some studies to be effective for neuropathic pain for SOME patients. It is NOT true that "once on an antidepressant you will be on it for life." A good PCP or MO or neurologist or palliative care specialist or pain specialist can help navigate this very confusing array of options, and will help keep you from "getting hooked" on anything.
lionessdoe, there are a couple other threads for permanent neuropathy, and there is a wonderful woman named Cindy (I think) that has shared a tremendous amount of information on her journey for a definitive diagnosis for rad-induced neuropathy. I wish you well - I ended up refusing rads because I was terrified of the potential for this complication. Let me know if you cannot find those - I think one is "permanent neuropathy"....
I have used a good cream on my scars, but will try some of the suggestions for the antichafing cream to see if that helps more. Thanks for sharing your ideas.
Aug 3, 2012 07:55PM Lezza13 wrote:
Hi Linda: What scar cream do you use? Also, thanks for the lidocaine idea. I was not sure if I could put it on that area. I had 23 removed on my right so the cording, etc, makes that side difficult to deal with. Maybe I should ask for gabetin. What did work for you since you had so many removed?
ivylnn. Deodorant on that side? I shall give it a try. Thanks
Aug 5, 2012 11:03PM talula2u wrote:
Hi everyone, i had 5 nodes removed last year. I have finally become active again after a long treatment and recovery. I have had tugging pain in my arm from my wrist all the way up the inside of my arm that reoccures. it has been getting worse. .after my surgury my doctor told me I would expierance discomfort.this seems like its more then discomfort. it is so darn annoying and a bit scary. I am wondering if this is a normal side affect or if I need to consult my dr.
Aug 6, 2012 02:02PM Lezza13 wrote:
I have that same tugging pain. I believe it is a side effect and very annoying so it should not scare you. Being a year out you could ask your doctor about it.
Aug 6, 2012 03:14PM wildrumara wrote:I had ALND at the end of February with a total of 20 nodes removed. Like many of you, I had a lot of burning and heaviness in my right arm, probably for about three months after surgery. If anyone, including my husband or three kids, would come near me, or rub against that right arm, I would cringe! I can now say, almost six months out, that the sunburn feeling and heaviness is finally gone. I did have a nagging elbow pain, which would radiate down to my wrist area. At that point, I decided that I should probably go see a PT. The PT said I had some mild cording and some inpingement in the right shoulder (which was mostly from underuse all these months) So, after six treatments with a PT (lots of stretching and lots of rolling of the skin/fascia/muscle in the upper arm...(OUCH), I am almost feeling back to normal. I do think its important to get PT. Not all surgeons (including mine) recommended it, but it definitely helped me after my BMX/ALND.
Aug 7, 2012 11:13AM Lezza13 wrote:
wildrumara: I did do some PT and it seemed to help with flexibility. Had to stop because of the exchange surgery. I will ask my PS for a new prescription and when I can start doing my exercises again. Thank you for sharing. Hope your elbow gets better.
Aug 8, 2012 03:07PM cinnamonsmiles wrote:
I have had severe post mastectomy pain syndrome on the chest, back, sides of chest, armpits, and back of upper arms for 18 months now. I am on a host of medications. I see above that someone asked if there are any topical pain creams. Yes there are. I know of Lidocaine patches and my pain dr. mentioned creams. The patches didn't work for me. It actually caused an increase in pain level that lasted for days when I tried to get the sticky glue under the edge of the patches out (I even had that stuff they use at the dr.'s office). For some reason my dr. didn't want to use cream on me, that was over a year ago. I think he mentioned something about too much medication in the system, but don't quote me.
Currently this is what I take daily:
Gabapentin(for nerve damage pain relief): 2100 mg taken throughout the day (dr. wanted me on more, but that is as much as I can tolerate)
Metaxalone(muscle relaxer that seems to work on the chest and armpits): 400 mg at bedtime, occasionally I take an additional 400 mg in the afternoon but that is rare
Amitriptilyne(anti-depressent that works for sleep and is thought to help some with pain): 25 mg at bedtime
I have found in the last year that sometimes Vicodin (5-325) works better and sometimes 25 mg of tramadol works better.
In the summer of 2011, I was receiving Stillette Ganglion Block shots to the neck (using lidocaine injected into the nerves to help block the PMPS pain.). But I found that I would only get 2 good weeks for pain relief.
That is when the doctor's started giving me a bag of lidocaine (lidocain IV infusion) straight to the IV in the vein. I get four weeks of relief from that. After that, I can feel the pain start creeping back.
There are days I could hardly use my arms for anything.
I at least can manage doing some household chores, walking my dog, a little bit of gardening, etc.
I agree that some drugs work for some and not others, and the degree varies. And doctors keep finding new things drugs will work for!! I say HOOOO RAHHHH FOR THAT!!!! Gabapentin was actually an anti-seizure medication and someone at some point, discovered that it can work for nerve damage pain
Day: Please don't make scare comments like that. I NEED some pain relief or I will have a greatly reduced life function, more depression, more weight gain etc etc. And if you don't know what the medications are for, please don't comment on it. Gabapention is used for nerve damage pain and seizures (I don't know what else). If one googles gabapentin, Lyrica and go to reputable web sites you will see what the drugs we take for pain are for:PAIN ( among other uses).
We need to support each other here, share our treatments, our gripes, our pain, our solutions, what doesn't work so we can learn how to handle the crappy side effects of having cancer and cancer treatments.
Dec 3, 2012 05:07PM Linda-n3 wrote:
Maltomlin, I have been re-reading these posts, and really appreciate your comment on how long your pain lasted. I am halfway there if this only takes a couple of years! I saw an interventional pain specialist a couple weeks ago, she injected the intercostobrachial nerve with ultrasound guidance. Not sure how helpful it was - certainly not complete relief but maybe 25-30 percent for a short time, so I will take that but probably not enough to justify a repeat. I will try being patient for a while, difficult as that is for me!
Best wishes for relief for all of you.
Dec 18, 2012 09:51AM keonghi wrote:
Thank you all for your continued comments. I am still experiencing quite a bit of pain in my arm from the ALND and my sides hurt from what I was recently diagnosed with PMPS. But, there is relief from pain meds, Gabapentin, lidocain cream, and acupuncture. I hope to God this doesn't last for "years" as some of you are going through. Good luck with you all, I hope your pain subsides soon!
Jan 17, 2013 05:36AM Linda-n3 wrote:
Just an update. I had a second injection of the nerve that has been so hypersensitive yesterday. The first injection gave me some relief, then I had a major pain flare with EVERY neuropathic pain fiber firing for about a month. I upped my pain pills, started a new medication (desipramine), continued PT and myofascial release - was just miserable. Weather changes might have been one factor, but not the only one as there have been other weather changes without those horrible symptoms. In any case, I finally got fed up with all the SEs from all the drugs. I quit taking them. I felt better (nausea, dry mouth, fatigue, constipation, etc.) - started improving within 3 days. Still bothered with the arm, so had the second injection. Woke up today feeling physically better than I have in over 2.5 years!!!!! I still have the peripheral neuropathy issues, but the mastectomy pain is at its lowest level ever, and I feel like I can move again! Yippee! Oh, happy do-da day! Hoping this is the hurdle and I will have better days ahead.
Much lovingkindness to all of you, hoping you all are continuing to heal and that your pain is ever decreasing.
Jan 17, 2013 06:38AM CelineFlower wrote:
Linda ... thats great news!
Pain, is such an important topic...
ill be having surgery in march/april .. so i am trying to get some info, so i can be [prepared.
What would you all recommend asking or doing prior to surgery to help reduce (or help cope) with pain , post surgery?
good thread ,
Mar 2, 2013 06:07PM Linda-n3 wrote:
I had to come here again to vent.... the last injection lasted for about 6 beautiful weeks, then last week I started having that sunburn pain again. I am miserable!!!!!
But have another injection scheduled for Wednesday, just trying to hang on for a few more days. I am finding it interesting that when I have severe pain in one area, ALL areas of neuropathic pain flare up, and when I can get the worst pain under control, they ALL seem to settle down. They all seem to be worse at night, if I am extra tired, and when I wake up in the morning, most of the pains are better, and some even gone! Hope the pain doc can work another miracle for me - I am getting very tired of living in this miserable body without escape, day after day after day .... and yet, every day, I am reflecting on all the little joys and beautiful things I have seen, so that each day is worth some little celebration.
May 29, 2013 05:28PM wirdgirl118 wrote:
Hi Kristi, where do you get acupuncture, is it in the arm that hurts? I'm going to seek acupuncture but wanted to ask someone who has "been there." Thanks!
Jun 3, 2013 12:17AM Cuculi wrote:
Hello. I am new member. I am 36 and had surgery and lymph node removal 12 days ago. As you all say is very very painful. The burning sensation, the stinging pain and the skin sensitivity does not get any better... sometimes I feel it gets worse... And of course back pain, right back pain as a consequence of not moving much my arm. Besides, I am not using a drain, however the doctor still has to take the liquid out, so I am seeing my doctor almost everyday.
Tomorrow I will see the doctor again and ask him about the medicine you have been talking about. I dont know what to do with my pain, I have always been so strong but now this situation is exhausting... from a medical and emotional point of view. The pain of course does not help at all. I have had one rehabilitation session for my arm. I hope that will help.
Reading that this pain can last forever or well several years is hard to accept... I will have to do something about it. Seems that gabapentin works. Will convince my doctor, since he said that I should start reducing my pain medicine (ketaprofen) seems not to work at all...
I have a 2 year old and now I feel so limited to play with him... I really hope this pain will go soon...