Jun 18, 2012 05:29PM Musical wrote:
lifelover, Sorry to hear about your wrists, I guess it depends on what you play and how you play.
I would love to hear if anyone has a topical cream to ease the burning.
Share important questions and provide support to others experiencing breast cancer and treatment-related pain.
Posted on: May 12, 2012 11:45PM
I have been posting for some time now, and have finally figured out that my relentless, nearly unbearable limb pain is due to chemo-induced small fiber neuropathy. Not fun. I found a neuropathic pain center in the Netherlands where they are using capscain cream and Normast to treat the problem. Does anyone have any thoughts? I am at the end of my rope.
Posts 31 - 59 (59 total)
Jun 18, 2012 05:29PM Musical wrote:
lifelover, Sorry to hear about your wrists, I guess it depends on what you play and how you play.
I would love to hear if anyone has a topical cream to ease the burning.
Jun 18, 2012 06:45PM Linda-n3 wrote:
I have used a lidocaine patch to ease the burning hypersensitivity after BMX - it aggravated my axillary nerve and I have had problems with anything, including sleeves, touching my skin at the back of my arm. This is different from the CIPN and different from the burning pain at the surgical sites. Geez, when I am asked to rate my pain, I ask "which one???" I feel like a bit of a whiner sometimes, which makes me then be harsh on myself ... anyway, the lidocaine patch really helps the arm pain and I wish I could get something like it for all the rest of them!
Jun 18, 2012 06:52PM - edited Jun 18, 2012 06:54PM by Ruby-
Hello everyone, like Vivirasselena, pain in my hands, started with the right, woke me up at night, numbness, tingling, burning, really painful. Just back from the neurologist who did a bunch of tests on me and it turns out I don't have carpal tunnel syndrome. Just plain old nerve damage from chemo and co. At my last visit, he had me get something like these and let me tell you, they work like a charm ! No more pain ! Not sexy looking in bed though
I'm now starting to get pain in my feet, two years post treatment !
I'll now finish reading the thread, blessings
Jun 18, 2012 08:00PM MaddyMac wrote:
And particularly hi Lifelover, sorry to find we have not only the same type of cancer but also neuropathy in common.
Just posting in case maybe someone might find help, but my small fiber neuropathy is not chemo-induced, so it may not be germaine. . .
I've had neuropathy in my feet, legs and hands since 1999, and they have no idea as to the cause. Mine is thus incurable, though I can treat the symptoms. When I first took gabapentin, I was just dopey and knackered all the time, but I stuck with it because nothing else had worked. My doc even prescribed an upper so that I could continue to work. That isn't a safe thing to do long-term, but when doc took me off it, I was surprised to find that I had gotten used to the SE and could take Gabapentin with no problem. If you find G helpful, maybe you can hang in there long enough.
Over the years I've had to take a higher dose of some drugs and add on new ones. I've been taking vicodin and tramadol and gabapentin and amitryptilene and mirtazipine for many years, and I'm able to manage it fairly well. You all, I pray and think, will be free of it eventually.
The main reason I wanted to write this, though, is Cinnamonsmiles: how DARE your f&8&ing pain doctor treat you as he has! Don't settle for that. I had the same sorts of problems early on, couldn't find a good pain specialist who didn't think me a secret addict. When I finally went to my family doc, he sighed, said that was all too common, and prescribed the meds himself. When he retired, he encouraged me to try again to find a specialist, and, failing that, to meet with family docs until I found one. I found that on the whole, medicine seems to have come a long way re: pain treatments, and I've got a good clinic now.
Sorry you are all having to go through this wretchedness!
Peace and healing to you all.
Jun 18, 2012 08:56PM Musical wrote:
Hi MaddyMac, wretchedness indeed. Yes my peripheral neuropathy has NO cure either. Like you, they've told me they dont kjnow what the cause was, but its typically stated that toxins such as sprays, smoking, drug abuse, alcohol abuse and the like are causes.
Amitrip was great for me, but too many side FX made me stop. Ive just toughed it out over the years and live around it. You have to. I was doing OK until flippin Arimidex put a spanner in the works.Hopefully it will settle down.
Its been a while since I've discussed it with doc though and I wondered if theyve come up with something. Doc was great at the time I was diagnozed with it (around the same time as you) because he'd been given a book by a colleague when at the time, apparently very little was known about it. Its been dubbed in times past as the 'silent disease' because many people have it to varying degrees and some (those with lighter symptoms) dont even know. Sufferers of this condition can easily be ridiculed as 'neurotic' because theres usually little to show that anythings going on. Of course we know different dont we. The book was called "Numb toes and aching soles" by John A. Senneff. My Doc graciously lent me his copy. It was printed in 1999. I think that was a 1st edition.
Wouldnt it be nice to have a cure from this monstrous condition.
In the book I remember there was a number of differing types of neuropathy. I wonder what is different about the chemo induced neuropathy in that there is an end in sight, or its curable?
Jun 19, 2012 04:20AM lifelover wrote:
Hi Linda and thanks for that information about creams.
I have seen a pain specialist in London - I was fortunate in this respect. He is the one I will go back to if the increase in oral gabapentin doesn't work.
Yes, the gabapentin does make me feel stupid but so far I am mostly okay when I'm performing and my music pupils understand what I'm going through so they are quite patient with me (I teach individually and privately so not much stress for me in this respect).
Before I see my GP again (next month), I'm going to do some research of my own and print out any information on the creams you and others have spoken of.
Many, many thanks to you Linda :)
Jun 19, 2012 04:35AM lifelover wrote:
Thanks MaddyMac, peripheral neuropathy runs in my family and I had very minor symptoms prior to my BC diagnosis. So, I guess those of us who have had it to some extent are more likely to have more problems after chemo.
Well, that's my unscientific thoughts anyway.
I hope I do function better after I've taken the gabapentin for awhile.
I know the amytriptaline doesn't make me as loopy as it used to.
Jun 22, 2012 08:32PM MamaTaz wrote:
My neuropathy is cancer and surgical related. I have neuropathy all over my chest, especially the area where I used to have breasts. Had bilat mastectomy Oct 2010, no chemo, no radiation, no lymmphedema, no reconstruction (my choice). Have been in pain since; hard to describe but maybe some of you can understand. Skin feels like mod-severe sunburn scraped with a stiff, stiff brush; cannot stand for a soft cotton or silk t-shirt to touch it or even a mild summer breeze but it is OK if my or others hands touch or massage. I get needles & pins, painful tingling. Occasional shooting pains but not very often. These are tolerable as they are often gone in 1-2 minutes. The pain is better now (moderate instead of severe) , 20 months post surgery but still troublesome. I use heat, warmed up rice bag, to make it feel better. Refrigerated cool gel packs feel good. Many with this problem wear ice nonstop but this feels awful to my skin. I also feel better with compression to the chest. Have gone from wearing Ace bandages wrapped around the incision, to Spanx-wear to compress the area. I feel like McGuyver trying out weird solutions in order to feel better. Lidocaine gel does nothing. Tried Lyrica...was a zombie, lost my brain. Narcotics do nothing but make me goofy; guess I am a cheap drunk. Acupuncture 14 months post-op has enabled me to wear my breast forms, if the bra is quite tight and creates compression. Before I couldn't stand to wear them. I tried seeing a homeopathic physician but several meds did nothing to help. Capsaisin cream nearly burned the skin on my thumb so NO WAY was it going on my chest. I recently did some research on medical facilities and research in Europe and came across the Normast. It is a bit pricey as my American medical insurance will not cover it but I placed an order for 2 months of pills. By then I will know if it helps or not. At least the company is truthful in telling people that. It is due to arrive next Mon or Tues. Will keep you posted.
Jun 25, 2012 11:45AM Linda-n3 wrote:
MamaTaz, please keep us posted on the Normast. I have similar symptoms from surgery, but they are in the back of my arm, around to armpit and chest, the area where the ALND was done. Skin touching my own skin at the back of my arm there is just miserable. I have been doing some "desensitization" that my PT recommended, and it might be helping a little. Some days I just don't know what is better, what is worse, what hasn't changed... some days I am able to just ignore all of them by focusing attention on other things ... other days I just feel like all I do is complain (at least to myself and here) and cry. Today I set my intention to find joy and beauty in today as best I can, despite being cursed with this miserable body. I am more than my body!
Jun 27, 2012 04:31PM MamaTaz wrote:
I ordered the Normast last Thur June 22. It made it to Louisville, Kentucky by Sunday afternoon and has been stuck in customs ever since. Ergomax website, from which I ordered the Normast, says there is no issue with the product clearing customs. The customs forms claims it as a diet supplement. I am not sure what the issue is with my box....if customs is understaffed or if they ARE having issues. I am getting pissed.
Jul 9, 2012 07:05AM lifelover wrote:
I'm back to report on my new meds and how they're working.
I'm 10 months post-chemo and still hoping my symptoms improve AND without the use of meds.
I'm now taking 30mg of amytriptaline at night, 1200mg gabapentin spaced throughout the day, 75mg venlafaxine (Effexor) and 150mg pyrodixine (vitamin B6).
So far, this is a great combination for the pain HOWEVER I am foggy brained all the time.
Because of the foggy brain I have become very depressed about my future. I'm beginning counselling tomorrow and hope that I can come to terms with my neuropathy and get on living again. Personally, I feel like staying in bed most of the day . . . mostly because when I try to do the things I normally do, I do not function well.
Anyone taking Normast? Please post your results. Thank you :)
Jul 9, 2012 12:28PM bluepearl wrote:
There's an anti friction cream made that helps with keeping the pain from clothes bothering you. Nortriptyline, another tricyclic antidepressant works for nerve pain and has a less toxic profile than amitriptyline. I find messaging with 100% aloe vera gels is soothing. Excercise the area helps too....scar tissue can bind nerves up too. Scientists are now working and coming closer to finding the key to stopping nerve pain from ALL sources, so keep hope alive. Cymbalta works best of the antidepressants for pain, but conflict with tamoxifen absorption. Sometimes it takes years for the pain to subside and when it does, it often does so very quickly. For burning pain, I bought some sunburn spray! My pain is much better after 16 months down the road (all from surgery) and thought I would have to live my life in constant pain which depressed the hell out of me. Stangely enough, ativan got me thru most of it....1 mg lasted 24 hours and made the pain quite tolerable and then I went off it cold turkey after 8 months....no real after effects. I am on low dose citralopram now. That's it. When I do too much with my arm, the pain comes back, but so far rest and A535 take care of it...and an 8-hour tylenol.
Jul 9, 2012 09:01PM MamaTaz wrote:
Planetstrands, how is the Normast working for you?
I finally received my shipment 11 days ago and have finished taking the powder form sublingually (SL) every 12 hours. This morning I took my first 600 mg oral dose. I often call my neuropathy The Snake because the pain sensations can change throughout the day in location, type of pain, and intensity. While taking the SL powder, it was like The Snake was alive and fighting back. I had more shooting pains in my armpits which I haven't felt since the drains were removed post-op. Compression to the chest area does not feel as good as it did before I started the Normast but the skin is feeling less irritated by a shirt. I have always had hypersensitivity post-op. With Normast I get periodic numbness under and around both my arms . I have NEVER been numb around the scar or anywhere else on my chest so the lack of sensation is welcomed by me. I think it is beginning to work for me as The Snake is more noticeable about 1-2 hrs before the next dose.
The Normast is a little pricey at 180 Euros (About $227 US dollars) for 2 months of treatment. Two days after it was delivered by UPS, I got a bill from UPS for $52; mainly FDA clearance and duty charges. That was not expected.
As I said earlier I don't take anything that messes with my brain. No Lyrica, no narcotics, no anti-depressants, etc. I don't like the side effects and definitely need to have my brain. (I am NOT criticizing anyone who does choose these options. This is my choice for me.) I do take Evening Primrose Oil capsules, 1000 mg each; 1capsule with breakfast, lunch and dinner. This has helped me without the drugged stupor. It took about a week to "kick in." It is often prescribed for diabetic neuropathy 2,000 to 6,000 mg each day, best taken with meals. I am continuing to take it with the Normast. I tried cutting the Primrose to 2 capsules a day and felt a difference the next day. 3 seems to be the magical number for me.
Netherlands, Spain & Italy are working on a Nerve Growth Factor hoping to repair damaged nerves. I am praying they get an answer and a solution!!! I am tired of American drugs which simply mask symtoms.
So...I will continue taking the rest of the Normast and remain ever hopeful.
Jul 26, 2012 06:53PM Musical wrote:
MaryB56 its a wee while since your post, but in case youre watching, I might recommend to you to head over to the Lymphoedema forum. There is much worthwhile material for you to read there, and ladies who really know what theyre talking about. OK I would strongly urge you to go there because one thing is for sure.....You dont wanna mess with LE. If you have it you need to know, and you need to know how to manage it in the right way. It can turn soooo nasty with complications and such that its imperitive you get wised up. I believe for the US they have a list of reputable LEists.Your health system is so different to where I am (NZ). Im sure there are options rather than you having to pay out for all these garments.
HTHs and hugs .
Aug 9, 2012 03:28AM lifelover wrote:
Great news to tell you all. My neuropathy is improving. I'm almost 11 months post-chemo and started noticing a dramatic improvement a few weeks ago.
I also had a test with a new machine they're using which diagnoses short nerve damage. Apparently (and I did not know this) the machines they have been using only measure damage to the long nerves. Well, the researcher at my hospital who is doing a trial using the machine said that I do not have any damage to my nerves. The pain I've had has been temporary following chemo and will disappear fully within the next year.
I've reduced my meds for pain and now take a very small dose basically so that I can sleep at night.
Aug 9, 2012 07:36PM Linda-n3 wrote:
Livelover, what type of machine are they using ot measure the short nerve damage? Would this help figure out if the chemo neuropathy is showing signs of improvement?
I have not had any dramatic changes in my symptoms, and am pretty discouraged. Finished chemo Dec 2010, and there has been slight improvement in the past 3 months, but I have been using a topical cream and also have not been using my fingers typing or other activities for more than an hour a day (when I was working I was on computer up to 6 hours or more a day and miserable!).
I was referred to a neurologist who did no testing whatsoever, just did a good thorough clinical exam and confirmed that I did have chemo-induced peripheral neuropathy, but her area of expertise is in diabetic peripheral neuropathy, and the meds aren't as effective for CIPN. The topical cream seems to be helping, but it is a royal pain in the neck to use and it would be so nice to have hope that I might still improve and not have to deal with it.
Thanks for posting.
Aug 9, 2012 11:14PM cinnamonsmiles wrote:
My pain dr. also wanted to put in the spinal stimulator for pain in my back (part of the reason why, I think is that he is such a hyper, tempermental ass that can't calm down enough to put an IV in my hand and is tired of it. The other two pain dr.'s I had before him stayed calm. I am a hard one to start an IV in).
I said no to the surgery. I haven't had one that didn't come without some serious complications in the past few years, so forget. I am not having someone mess with my back.
Aug 10, 2012 01:55AM lifelover wrote:
Sorry that I don't know more about the testing. I know it's in the research stage here in the UK and there are only 4 machines in the country that do it. I will see if I can get more information and then post it here.
I think that your neurologist should be testing you. The machine that has been used in the past uses needles that send an electrical impulse into the nerves at different points in your body. This is the test that measures long nerve fiber damage.
The new machine measures short fiber damage. It is used on the foot, at the top just above the toes. It isn't a needle but is about the size of the eraser end of a pencil. It sends what feels like a heat wave through the foot.
I saw the computer print out of my foot which measured how the heat conducted through the nerves. Mine was normal. I also saw several tests of patients who had severe or slight damage and there was an obvious difference.
Sorry I'm not very scientific so I don't know exact names.
Linda, I recommend you see your neurologist again and ask for testing. Knowing that my neuropathy isn't permanent helped my outlook on my recovery.
Aug 10, 2012 04:19AM dawnnadine wrote:
I use compression with the yogitoes strap- I wear it all the time and it has imporved my constant pressure greatly. You might also want to check out the Post Breast Therapy Pain Syndrome facebook page - member only but well worth joining for more information and support. The best- Dawn
You may also like...Quantity Price $17.00Add to Cart
DESCRIPTIONAn eco-friendly, adjustable, elastic yoga strap that supports while providing flexible resistance, so your muscles stay actively engaged in poses. Supports restoratives when long and inversions when short.
SIZE15" expands up to 42"
MATERIALS & DETAILS
Aug 11, 2012 12:00PM Linda-n3 wrote:
Cinnamonsmiles, I am with you on the avoiding more surgery, especially when it involves the spinal cord!!!!! I have taught a pain management elective for pharmacy students for several years, and have had a guest speaker talk about the interventional pain management techniques, and have not been impressed at how well they would work for this type of pain anyway. I think it just means they don't know what else to do... I would NOT submit to it.
Lifelover, thanks much for the information. I will ask about possible trials here in the US, wonder if I could get into a trial in the UK (would LOVE to have an excuse to travel and visit there again!). After you were evaluated with this test, do you have more to do for follow-up?
Aug 27, 2012 03:02AM lifelover wrote:
Hi Linda N-3, sorry to be late in replying but I've been away on holiday camping without my computer :) The study is being done so that in the future patients will have more options for cancer treatment. There is no follow-up. Those who I spoke to who have had the testing done, were satisfied to know whether or not there neuropathy was going to be permanent or not.
Sep 7, 2012 11:34AM worldwen wrote:
I too have experienced pain since chemo, radiation and double bi-lateral masectomy. My pain specialist gives me drugs upon drugs and none work for me. I am tired of all the drugs with the side effects and other drugs to counteract those side effects. This is what I am doing; going back to nature. I have found many supplements and urbs that are working. I nerve pain is lessening especially nervous leg syndrome. Here is a list of supplements I am taking with good results. Chromium, Calcium, Vitamin E, Beta Carotene, Selenumium, Magnesium, Boron, Cooper, Iron, and good old Knox Gelatin in the packets at the market. Do your research and see what these supplements are for and why your body is depleted. It is all the drugs we have been given including chemo, radiation. Our body is needing to come back and recover from all this and to help it along we must put back what we have lost fast. This is what I do and it is working. I also meditate at least 30 minutes a day to rest my body to allow healing. Hope this is helpful to those concerned about pain. God Bless all of you in your journey.
Sep 7, 2012 04:20PM 3jaysmom wrote:
hi i only come here sporadically, but i wanted to add, i have neuropathy foot/hand syndrome.. which came 1st, the chicken or the egg, cuase I'm a diabetic, with MS.. then, came chemo so triplewinner!
anyway: someone (sorry) said something about lidacaine of lido derm patches.. my pain spec gives me lidoderm cream.. more like a gel.. works for a few hours on my hands, which are the worst, and then you can reapply. i use the patches for ares that'll hold them, and the cream where it won't.. hope that helps. i too, have "touchiness" by my ex breat area, i hade a bmx no recon.. the gel goes there, and really helps! 3jaysmom
Sep 24, 2012 02:31PM MamaTaz wrote:I have been using a natural supplement used in Spain & Italy, other European countires & made in the Netherlands: Normast. PEA, Palmitoylethanolamide, is an anti-inflammatory, anti-pain naturally occuring amino acid used specifically for neuropathic/chronic pain in Europe for diabetic neuropathy, sciatic pain, shingles, chronic pain, etc. Research in Europe is a bit more focused on the cause of disease rather than a drug to mask the symptoms as is done in the US. One of the original researchers for this is an Italian physician, Rital Levi-Montalcini, who won 2 Nobel prizes for her work on nerve regeneration. US medical publications mention PEA but you have to know what it is in order to research it.
I used Normast for an initial 60 days. It did not completely take away the allodynia I am having but helped IMMENSELY in decreasing the painful needles & pins, severe sunburn sensations I have. After the 60 days I stopped it to see what would happen. Within 2 wks all my allodynia returned so I placed another order and the Normast "kicked in" within 4 days.
I do not get a kick-back nor a commission for mentioning this product. There is no monetary gain or discount for me. It is marketed as a supplement in the Netherlands and will pass customs. My insurance will not pay for this but I am willing to pay myself in order to get relief; the price is in Euro dollars. I can't stand Lyrica or narcotics. They make my brain foggy like I am a complete drunken sop AND they really do nothing to decrease the painful sensations. The Normast has not caused any side effects that I can see and all my blood work is completely normal. My oncologist, surgeon and family physician are supporting me in this and they are following me to see what it does to me and for me.
If you want to read more about it Google the long name of PEA or Normast and read articles for yourselves. PubMed, a US medical site, does have info on this; also Wikipedia. This site would not allow me to post web-links.
Google: Rita Levi-Montalcini. Rita is an Italian neurophysician, working on nerve-growth factor, twice awarded Nobel Laureate who first started research on nerve damage.
If you have questions, you can send me a Private Message (upper left hand corner of this page under Topics).
Oct 10, 2012 07:07PM - edited Oct 10, 2012 07:11PM by Kairos
Lovegolf, the cream you mention sounds like a real possibility for me. Is there any possibility of getting specific details of ingredients so I can ask a compounding pharmacist here (Australia) to make some up for me? I am currently taking Gabapentin. I have also used Emla cream( lignocaine and prilocaine). I like the thought of a cream with these ingredients
Oct 15, 2012 05:31PM Marciw wrote:
Hi. As I am new to this site and just had breast cancer surgeries in August and again Oct 1, I am so comforted to read that I am not alone with my pain. I am sorry so many are suffering. Have you ever asked your physicians if you have RSD? Some of your description reminds me of my pain. After the 2nd surgery, nerve damage caused my 2nd flareup with RSD and since then, I am unable to leave the house except for emergencies, as the softest fabric causes excruciating pain. When I first got RSD after a wrist fracture in 2005, my arm atrophied quickly, so I started PT and within a few months regained use of the hand and arm. Now that it's in the breast, I don't know what kind of therapy there could be. The expert I went to in 2005, Dr Kirkpatrick, does not take insurance and is away the rest of this month. Moffitt Cancer Center does not treat RSD, even if triggered by the cancer surgery, so I am not sure where to turn. Best wishes for healing and for a cure.
Oct 28, 2012 12:36PM - edited Oct 28, 2012 12:36PM by lionessdoe
Warning: According to the manufacturer of implanted spinal pain stimulators, they are not reccomended for lymphedema as they increase lymph flow and they are not reccomended for diffuse pain.