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Using Pain cream on lymphedema arm, a terrible idea??

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amanda6
amanda6 Member Posts: 50
edited January 2021 in Lymphedema

Has anyone used a pain cream, like Ben gay or capsaican cream on their lymphedema arm ? Any opinions on this? I have ongoing lymphadema swelling in my arm along with a pinched nerve in my elbow. I have been taking a medication for the nerve pain, but I'm starting to feel some side effects - heart palpitations - that scare me. I'd like to stop it & have been thinking of topical pain creams as an alternative to pills. I've used a very tiny amount on my hand & it definitely helps...any and all opinions will be much appreciated!

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  • minustwo
    minustwo Member Posts: 13,128
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    amanda - Maybe I'm conservative, but I wouldn't use any kind of meds on my LE arm unless a trained,certified LEPT recommended it.

  • amanda6
    amanda6 Member Posts: 50
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    Thanks Minus, I'm normally very careful about what I'll use on my skin- just cetaphyl & eucerin - but I also wonder about the effects that oral medications must have on our lymphatic systems too. It's all so very unstudied! ( I'm thinking that there are no medications for lymphedema, so it's simply not a lucrative disease - maybe that's cynical, but...) I appreciate your reply, that's the way I lean too. I have heart rhythm issues & the pain creams seem like maybe a safer way to go for me...

  • specialk
    specialk Member Posts: 9,227
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    Maybe check with your LEPT about the topicals. Interestingly, there is a school of thought about lymphedema being an inflammatory disease, so anti-iflammatory treatment is being looked at. I have been following this research for a while, there is a doc at Stanford who was/is doing trials for an existing drug ketoprofen for use in primary lymphedema patients. Here is the info linked. The other approach is bypass or grafting surgery, the expert being Dr. Chen - initially at U of Iowa, now at Cleveland Clinic, I believe. These surgeries are now being done in many other places as surgeons have learned the technique, I have been evaluated by, and am a candidate for based on tests and imaging, at Moffitt Cancer Center here in Tampa and the surgery is done by a microvascular surgeon. My LE is well controlled for the moment so I have not elected to do the surgery yet. I have had a number of recon issues and subsequent surgery so was not wanting to volunteer for one that is so elective at this point - not ruling it out though. There is a thread here on BCO about these surgeries as well, also linked below.

    https://med.stanford.edu/news/all-news/2018/10/anti-inflammatory-drug-effective-for-treating-lymphedema-symptoms.html#:~:text=Two%20early%2Dstage%20clinical%20trials,damage%20in%20patients%20with%20lymphedema.&text=Lisa%20Hanson%20took%20part%20in,a%20condition%20known%20as%20lymphedema.

    https://community.breastcancer.org/forum/64/topics/818062?page=21#post_5485080

  • minustwo
    minustwo Member Posts: 13,128
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    Thanks Special K. Always glad to see Stanley Rockson at Stanford cited. Personally I think he's the guru.

    Interesting that my PCP has added a C-reactive Protein test to my next round of blood work. My heart doc said he's glad to see the test added. Apparently CRP is produced in the liver and numbers rise when there's inflammation in the body. I was unaware of the tests showing that this may be a better indicator of CVD (cardio vascular disease) than LDL levels in cholesterol. Also used for testing autoimmune diseases like lupus and RA.

  • LivinLife
    LivinLife Member Posts: 301
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    and scleroderma : )

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    amanda - I used to have severe sciatica along with lymphedema. At its worst when I could hardly sit, I regularly took Lyrica, an anti-inflammatory, and a muscle relaxant without any effect on my lymphedema. I didn't have cardiac effects, but that is worrisome. Have you checked with your doctor?

    For my sciatica, I did postural alignment exercises and nerve gliding/flossing. It took months, but it worked. I was able to get off all those meds. The sciatica flared up recently, but it's ok now.

    I also take magnesium (good for nerves and heart).

  • amanda6
    amanda6 Member Posts: 50
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    Thanks for the links Specialk, both interesting. I have a lot of catch up to do re lymphadema, I'm very new to this. It's heartening that there's some progress being made, some studies being done. Best to you:)

  • Astrid
    Astrid Member Posts: 1,033
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    SpecialK

    A big special thanks for the info

    Gonna ask my GP if I can get a prescription for it. Will give her the article to read.

    No known heart trouble so should be ok.

    Gee that is exciting news!

    AmandaK I don't know those creams but I have rubbed magnesium cream into my lower arm ache..below the main swelling area with good results and occassionally a strong anti joint/muscle ache cream ( the ones that smell like menthol) with good results too. Ibuprofrn works well for me too.

    Good luck finding relief

    Astrid🎄

  • amanda6
    amanda6 Member Posts: 50
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    Thanks Serenity, I'm taking neurotin. I just jumped on for relief without really checking out the possible side effects, just that it was not contraindicated with what I currently take - started it about 3 weeks ago. Started getting palpitations, dizziness & insomnia, & really it doesn't even do that much for pain! I messaged the doc about weaning off it & see him at the beginning of the year. I haven't done the nerve gliding...actually I think the nerve might be moving toward healing now as the pain is moving away from my elbow into my hand & fingers...hoping so!

    Glad your sciatica is at bay....I'm taking b complex, will check magnesium. Thanks:)!


  • amanda6
    amanda6 Member Posts: 50
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    thanks for that feedback Astrid. I've rubbed a little capazan (sp?) cream - contains hot pepper - on my hand & it gives good relief, doesn't seem to effect my arm swelling. I plan to probably continue this & keep a close eye on the swelling. Haven't heard of magnesium cream, will look that up.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    I was on Lyrica for years and very slowly weaned off it. If Neurotin isn't helping at all and causing such side effects, I wouldn't wait for the doctor. I'll take pain over heart arrhythmia. Ask your pharmacist instead. You haven't been on it that long.

  • spookiesmom
    spookiesmom Member Posts: 8,177
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    Might want to try Biofreeze.

  • specialk
    specialk Member Posts: 9,227
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    minus - my DH had a CRP done recently when he had strobing lights in his eye and lots of floaters - like a swarm of gnats - about a month after his robotic sinus surgery. The test was ordered by the ophthalmologist, of all people, but he was looking for any evidence of stroke (TIA), and he did a carotid ultrasound as well and brain MRI. All tests were normal and the ruling was ocular migraine, but it was nice to have baseline of all the other stuff. He has a strong family history of heart attack and stroke.

    amanda - I too am happy that some progress has been made regarding LE research, but it is too little to date - there are a lot of us with it and dealing the best we can with docs who don't know enough. I am certainly grateful to the docs who have made this their focus and specialty. The Stanford research was done for those with primary LE, but I am hopeful that those of us with secondary LE may also benefit. The surgical approach has helped many and some surgeons are actually starting to do a similar surgical intervention during breast surgery and SNB as a preventive for LE. Just as SNB was revolutionary and is now commonplace, maybe this will be too and fewer of our fellow breast cancer patients will be diagnosed with subsequent LE. Another thought about topicals is Voltaren, the recently available prescription strength NSAID cream.

    astrid - please let us know if you are able to get ketoprofen!

  • Astrid
    Astrid Member Posts: 1,033
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    will do!

  • Astrid
    Astrid Member Posts: 1,033
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    Special K

    This could be the gift that keeps giving. Reading up on it, it is available by prescripition here ( australia) for oral dose 200mg called orudis or oruvail...

    and is often prescribed for arthritis...which I just got dx'd with. (Osteo... in both hips) ...

    so I reckon I'm a good chance and it may well help with both.

    Will have a good chat with my GP about it.

    Thanks again

    🎄😊

  • cwins1218
    cwins1218 Member Posts: 30
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    Hi,

    My LE therapist uses CBD balm or cream and I use it religiously. Between my lymphedema and Post Masectomy pain..I don't think I could stand it. I also use Neurotin but I was prescribed that for the post masectomy pain and it does help. but not completely. I ended up getting a pump. and I still uses the CBD every night. NO THC.


  • amanda6
    amanda6 Member Posts: 50
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    thank you cwins! Do you mind sharing just what cream you use? I've been looking into cbd cream, there's a lot of choice out there. I am taking neurotin - 400 mg/ day, keeps pain pretty tolerable but makes me tired & sleepy. Also using a flexitouch & a Solaris tribute night sleeve. I can't tolerate a compression sleeve during the day...this seems to keep it pretty steady. Man, nerve pain on top of lymphadema just stinks!

  • cwins1218
    cwins1218 Member Posts: 30
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    I use 900 mg of a cbd salve from Green Balance Hemp and Wellness. It is a local company in Indiana but available online. I use the 900mg salve and a 500 cream during the day. I also use it on trigger points on my body like my neck and shoulders because my LE bothers me mostly at night when I'm trying to sleep. If I can get through the night after using the pump the balm I can tolerate the day.

    But no cancer...

  • amanda6
    amanda6 Member Posts: 50
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    thanks, I'm going to check into that. My therapist suggested arnica cream as well - haven't tried it yet but it's a low cost option to try. I hear you on the neck/ shoulder pain at night ...take care:)

  • doxie
    doxie Member Posts: 700
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    I am using diclofenac sodium topical gel (Voltaren) on a frozen shoulder on my LE side that appeared in June. Just started treatment with the gel in December and after about a month of use it is irritating my skin a bit, but has helped inflammation and pain go down. PT is also helping, but not yet resolving the issue.

    My LE had been dormant for years but in November I had a flair due to bug or spider bites on my previously radiated breast. I was shocked by how bad the LE got in my breast, trunk and upper arm in such a short time. It is still not totally under control, but the diclofenac sodium has helped, not hindered as best as I can tell. I may have also have had a small LE flair due to the shoulder issue, but I didn't recognize it at the time. The pain was similar.

    I'd been trying to manage the shoulder pain, but sought out the doctor when the LE hit the same arm. I was trying to avoid the doctor's office during the pandemic.

  • amanda6
    amanda6 Member Posts: 50
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    hi doxie, my lymphadema flared about the same time yours did, after lying dormant for 10 years. Not really sure what caused it, maybe a sunburn. The swelling was mainly in my elbow & led to nerve irritation & pain. I'm told that the lymphadema swelling is causing the nerve pain & I'm trying everything I can to get it down, but it is stubborn. I recently got a flexitouch pump, that most definitely is helping. The nerve thing travels into my shoulder which is excruciating. I've tried so many creams. Yesterday I tried one called Ted's pain cream - it has worked like a miracle for me. This is the first time in months that my shoulder( & arm ) have been pain free. I haven't put any on my lymphadema swollen arm ( the lymphadema doesn't extend to my shoulder, so I feel I'm safe there, but the lack of shoulder pain seems to lessen the arm pain.)

    I'm going to an occupational therapist now, it is definitely concerning with covid, but I feel it's a chance I have to take. Hoping your shoulder, lymphadema & pain soon resolve...Take care:)

  • doxie
    doxie Member Posts: 700
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    My shoulder issue caused shooting nerve pain in my elbow and below. It is better with PT and the Voltaren gel. It is an NSAID, but only 6% (so they say) is absorbed into the system. Most stays locally at the site of application, which is good for me because I am very sensitive to NSAIDs and suffer through pain over taking them. It only works after applying 2 - 4 times per day and on an ongoing basis. I can now use it only 2x per day. Any less and the pain increases. It helps reduce inflamation also, but I doubt it would directly affect LE inflamation. It took about 2 days before the gel really started working.

    I am assuming you have tried massage? I've not gone back to read up on your posts. (can't get a break from work over the weekend) That works miracles for me on my LE.