Post Mastectomy Pain Syndrome (PMPS)
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Thanks for posting Linda. I'm also forwarding to my SIL who has a TENS unit & continuing Vicodin, but constant pain from RA.
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My aunt has the implanted stimulator and the Quell, after only 1 day, is working better for her than the stimulator does.
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Linda: What good news to hear from you. I don't think I've heard the words "ITS WORKING" in a long time. Yeah for you.
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LindaKR. Where are you placing the Quell electrode? Are you wearing it around your ankle?
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There are 4 electrodes on a band and they are placed 1-2 inches below your knee, you can use either leg, I switch off, one during the day and the other at night - the objective is to stimulate a nerve bundle on the back of your calf. My old PCP understood the reason for stimulating that nerve bundle and even used its name (but of course you think that I can remember that).
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so you wear it all the time? seems incredible! How long do the batteries last? Is it suppose to have any SEs?
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I wear it most of the time day and night...no side effects. Here's the link https://www.quellrelief.com Read the info under the clinician tab.
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Does anyone have success wearing Quell just for the tightness and pain in chest and upper arms i.e. PMPS?
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Quell helps all of my pain issues, fibromyalgia, osteo arthritis, the pain and tightness in my MX side chest and shoulder, the joint and muscle pain caused by the aromatase inhibitors, neuropathy, and.....everything. It helps all over with my pain. I wear it pretty much 24/7 and have had it for about 2 1/2 weeks. I find that I can leave it off longer and longer and still have the pain relief, while lowering my pain meds. I'm sold on it. NOTHING expect oxycodene and topical marijuana had helped me (and the oxy just took the edge off). When my pain starts increasing after have the Quell off for a while, I just put it back on and within a short time span my pain decreases. I do notice, however, that because my pain is less, I've been over doing - still have to pace yourself, because it doesn't really fix anything, just makes it so that our pain doesn't register all the other pains. But I recommend it 100%!!!!!
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....it also helps with the achiness that I get in my arm from lymphedema.
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.... also my sciatica
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Thanks Linda. I'm still on the fence but if I could get some relief from this terrible tightness and burning in my chest that would be great. I'm thinking I might give it a try after I take my first big solo trip since my surgery last April. I fly to Vancouver and do a road trip in British Columbia. I love western Canada and am excited to see how I do with carting luggage and my camera gear.
I am so glad to hear your positive report and hope it continues.
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I just found this topic, and am too impatient to read through all the posts, but after having read a few, it seems to me that when you refer to PMPS, you are talking about constant pain. Is this correct?
I don't have constant pain, but occasional pains. But just a few minutes ago, I had a SHARP pain that literally felt like a hot knife had stabbed me! And I can honestly say that I can withstand pain fairly easy, but this had me in tears. It only lasted a quick minute, and was gone completely.
Needless to say, it scared me! Anyone else experience this? Is it likely to continue? Is there anything I should do
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The Post Mastectomy pain syndrome, is like not permanent pain, but as you described it, sharp pain for about 20 seconds, and then as often as a few time in 10 minutes! Also it hurts when you move the arm! And the last but not the least, a burning senzation of the skin and you wish to have it numb all the way to armpit! Some of the ladies describe it as "iron bra" or a vice!
If you want to join to our group in FB you can find it by clicking on link
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Gentle Hugs
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Thank you
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jo5....Yikes!!!!! No rash for me. I wear it almost all the time and switch legs.
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i think I get used to it and don't notice, but my left leg is pretty numb from compressed nerves and neuropathy, it's stronger felling on my right, so I turn it down. So I'd say mostly light sensation.
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just trying Cymbalta - the SE's make me fee like i'm back in chemo! Nausea, bad taste in mouth, no appetite etc...this can not be good for me ;(
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I couldn't tolerate cymbalta...the side effects were far worse than any pain benefit.
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About the Quell--I saw someone in my office wearing what I thought was a brace of some sort on her leg. I asked her what happened and she explained to me that it was a Quell unit! I told her I had heard about this device from women who participate in this discussion. She told me that she is VERY happy with the Quell! She has had several back surgeries over the past 19 years and was taking morphine and other drugs to alleviate her back pain. Her pain doctor recently had his license suspended for a brief time for an investigation of possibly over-prescribing medication. My co-worker's pain was so intense that she was wondering whether she could continue working especially since she was without her medication due to the problems with her doctor so she took the opportunity to try the Quell. She said the Quell has changed her life! She if off the morphine and other pain meds completely and feels as though she has gotten her life back!
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Wow...great Quell story. I'm still super happy with mine. My parents each bought one, they're in there mid 80s and after 1 day they're walking more, moving more with waaayyy less pain. I'm sold on it.
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Hi, I'm new to this thread. I had a BMX on June 30,2016. I've had a hard time with the pain. Both my BS and my PS seem confused by my pain level. One part of it is that I can't take pain meds so I have done this without anything. A big part of the pain is a burning especially in the middle of my chest. I feel more like a burn patient then a surgical patient. It's also underneath both breast. Is this nerve pain? Anyone know if it will get better? And will the fills for the TE make the pain worse? Thanks for the help
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Mom2fourplusmore- I hadn't posted on this board either but I read it as I am shocked still at both the level of pain I'm still in (6/21 BMX w TEs) and the complete dismissal of my PS for the most part. She's been discouraging my pain pill use since I was FIVE days out of surgery?!?! I am finally getting through to her that I didn't actually want to be reliant on pain pills but I just was not finding relief with "deep breaths and patience". I've tried muscle relaxers (somewhat useful with that tightness feeling across the sternum) and now I'm taking Xanax (anti anxiety) when I start to feel frantic from the nerve pain. My arm (my radial nerve specifically) was damaged during surgery and that pain has sort of started to make me a bit crazy. I am quite emotional and occasionally very discouraged and hopeless feeling because again, it took until just this week for my PS to agree to give me a referral to see someone about it.
Pain is incredibly insidious the way that it wears us down and makes the world look sort of grey colored. I have found Advil to help more than Tylenol, warm heat compresses to help more than ice- but everyone's different so I would say try every single thing you can to get even a moments relief. I'm so sorry you're struggling, wish I could come hold your hand! It's so hard to know going into this surgery just how involved the recovery will really be. Gentle hugs to you! :
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momto4 and 4boys it is awful that you have to be on this thread as you probably expected your recovery to be fairly straightforward as described to you by your surgeons preop. Getting to a pain specialist as early as possible is important. I know I waited almost a year nd the pain doc emphasized the importance of early intervention(at least at about 3 months post op) even though my PC doc had put me on Neurontin without much relief. There are a variety of interventions, however, a big bonus of seeing a specialist is that your story is heard and not dismissed. Sadly, your surgeons job is over and they have such limited knowledge and perhaps even less interest in any chronic problem that resulted from their surgical intervention. Definitely seek a pain specialist who can oversee an entire pain management plan. Let us know how you continue to do in this crazy world of recovery.
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magiclight, I will have to see if I can find a pain specialist. I must admit I'm not even sure how to find someone like that. The world o medicine is insane. You need a PHD yourself to figure out who does what and who to see for what. I think life was better when you had a town Dr that knew the whole family and came to your house. I guess I watch Little House on the Prarie too much.
4boys, I'm sorry your not having fun either. I feel like most of the other women are doing better then me. They seem to be sleeping in their beds and doing the fills pretty easy and moving on to the next step. I'm still sleeping in a chair and have this burning feeling. Not sure why I'm having more issues and like you said the surgeons seem baffled. But I think it's sad but true that the surgeons job is done and no longer care. This has definitely been a learning experience for sure.
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Jo-5 they say misery loves company but I am so sorry you are still suffering. They never tell you this could happen. In fact both of my surgeons said they've never seen this. That's not very reassuring. What is a ten unit? I do use Aleve. It works ok but not great on the nerve pain and it can upset my stomach so I need to be careful.
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Mom2Four- a TENS unit is the little pads they use, sometimes at a chiropractor or a physical therapists office- they place the electrode pads on your skin and you feel a very mild tingling sensation that "disrupts" the nerve information being sent. It sort of blocks the pain signal. I used one for months after a car accident. They can make a huge difference.
For everyone else- thank you so much for responding. It is SO hard to have this unexpected pain and it's so frustrating when everyone around you says "oh, you're not better yet?!" Goodness, I've had some dark moments feeling like I was doing recovery all wrong. It's so, so good to hear other people who've been there and understand.
Thank you ladies so much.
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Hi Ladies, I think some of my symptoms fit right in.. but let me know if I dont' have PMPS... I dont' really feel pain (like I did with the TEs) but I do feel a constant tightness and a burning sensation on my sternum. In fact, if feels like I am a 3rd degree burn patient. I am 5 weeks out of BMX, and 2.5 weeks out of TE Removal, and trying to start stretches, but don't want to hurt myself and cause problems either. I still have all the glue they used from the surgery 2.5 weeks ago...
I just am wondering what to do about the tightness and burning feeling? I can most times zone it out but sometimes it's really bad. I'm on NOTHING for pain as I don't want to mess up the pathways for Tamoxifen.
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Linda~
Yes, I find this site difficult to work with.
Replies are posted and I never see them.
Just my two cents.
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Garden,I had a similar problem but I learned from the mods that when you click on a topic it opens to the last page you viewed - not the last page in the topic thread. Now I always check to see if I'm on the real last page.
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