I'd appreciate any tips from anyone that has found a remedy that eases the discomfort from temporarily swollen lymph nodes around their neck. Usually my nodes there aren't that enlarged, but occasionally they flare up for several days (presumably triggered by fighting off an infection, though I haven't been aware of any raised temperatures). When they are like this, I feel pretty uncomfortable, with any neck movement making matters worse. The discomfort isn't particularly localised, but is enough to make me feel decidedly "off". Usually the swelling resolves after a few days, but this last episode has lasted on and off for about a fortnight. I don't recall having to put up with long lasting discomfort prior to my CLL diagnosis other than when I had mumps as a child!
I haven't tried taking any pain medication out of kindness to my liver and kidneys, but I'm prepared to give that a try. Usually the discomfort is worst in the mornings and not that noticeable by mid afternoon.
Any suggestions welcome!
Neil
DX SLL/CLL Rai Stage IV in Feb 2009, still in W&W
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I suffer from swollen nodes in the neck as well Neil - usually worse on the right side.
I've read about the castor oil packs, but never tried them. I use a wheat bag, warmed up in the microwave as per instructions, and just apply that for twenty minutes or so a couple of times a day. It does seem to provide temporary relief - basic vasodilation facilitating drainage around the node I expect. It works best for me when I have an infection that is exacerbating the swelling (which is always present to some degree even when I'm feeling well). The wheat bag is easier to apply to swollen neck nodes than a water bottle as you can drape it round your neck.
At any rate, it tends to make me feel better, because it is quite comforting...
Hi Neil I'm with Jules on the wheat bag and warming it slightly. Before diagnosis l used wheat bags for years, for my sore neck that played up and eventually the collarbone/neck pain, turned into ear ache also. Off and on l struggled for years (especially when l got tired or stressed) and got onto a chiropractor, some relief was obtained by doing this, but after resting up for awhile, the pain became more obvious as lymph nodes enlarging. Ha diagnosis came a few months after. I'm having the same issue at the moment and had enlarge nodes in the neck/collarbone region for a few weeks.
I too had mumps as a child and felt this pain, as much the same from what l recall. I had mumps as a child more than once ! Nasty !
I wonder if Lymphatic drainage would be worth looking at ?? Is it safe with CLL ?
Thanks everyone for your suggestions. Given the common thread is applying something that retains warmth to help the swelling resolve, I'll be giving the wheat bag idea a try initially before trying the castor oil packs. Sounds a lot less messier and easier to re-heat in a microwave oven, which I'm sure hadn't been invented when the castor oil treatment got started!
The 60 minutes of quiet time does sound attractive Chris!
Regarding the lymphatic drainage suggestion Netty4, I know some masseurs are reluctant to do this for leukaemia patients, but suspect it's due to general caution rather than due to any real risk. After all, we already have cancerous B-lymphocytes throughout our body and getting them moving into the blood stream is probably advantageous, as they are less protected there from the microenvironmental survival signals they get in the lymph nodes and hence are more likely to die off in the blood - or that's how I see it.
Thankfully my neck has nearly resolved for now but I'll know what to try next time - heated wheat bags followed by a gentle massage! At least we are heading to cooler weather here now. We've recently had some 40C weather - not conducive conditions for warming your neck!
Hello everyone. This looks like a pretty old post but if anyone out there is still checking in, I have a question about the wheat bags. What exactly are they?? I'm newly diagnosed and in watch and wait. I exercise regularly which helps with my swollen glands but they occasionally flare up and can be quite bothersome. Are wheat bags just cloth bags filled with wheat? What kind of wheat? (City girl here). Can they be purchased or is this a do-it-yourself kind of thing? Any feedback would be greatly appreciated!
Yes wheat bags are exactly as you described and easy to make if you are a sower. The wheat type doesn't matter - just buy what's sold at a pet food store. It's probably best if you make a couple, so you'd probably only need a couple of pounds or a kilogram to fill the cloth bags. Chose a fairly strong material, because the wheat is fairly heavy and you don't want the bag to burst if you drop it. I recommend washing the wheat grains first and spreading them out to dry well before filling your bags, as you're likely to have a small amount of wheat dust, chaff, dirt, etc, in with the wheat and you don't want that coming through the material and irritating your skin. (Some people can be quite allergic to the wheat dust.)
Just pop the completed bag in the microwave for long enough to get it to a comfortable temperature - you don't want to burn yourself. Make sure you store them somewhere dry - you don't want mould growing on the wheat grains...
So glad I found these posts! It was reassuring to find that it's probably safe to use heat to relieve the pain from the swollen lymph nodes around my neck. I'm using a neck wrap from Walgreens that can be put in the microwave (or frozen, if cold pack is needed) as I write this.
I have a couple of questions for the group: can extreme stress cause the swelling and discomfort, or is it just a coincidence in timing? I only noticed mine being visibly swollen once before, and it seemed to go away when I started imbruvica close to 3 months ago. The dr. did tell me that the lymph nodes may go up & down a bit when starting imbruvica; has anyone else had that experience? - Jackie
Interesting suggestion regarding extreme stress causing swelling and discomfort - I'll have to keep that in mind to see if I notice any correlation. Has anyone else observed this?
Likewise, have any members on Imbruvica noticed nodes going up and down when they commenced treatment?
Good point Jeff, and something for everyone to consider. While the heat treatment may help both conditions, again we need to consider that we are subject to the same aches and pains, if not more so, as other people our age and not ascribe everything to CLL.
Are you able to explain how your neck discomfort/pain manifests from your cervical arthritis? Is it more localised or perhaps particularly painful when you turn your neck and is the pain worse at any particular time of the day?
I know thisbarsan old post but you could try a fleece scarf tied loosely around the neck. In summer I sometimes look really weird with the fleece on neck and hands but the warmth helps alleviate discomfort. Also it looks a lot better
Than wheat bags and oil packs. Save those for indoor use.
I started having the pain before diagnoses and attributed it to CLL after diagnosis.
I was surprised by the radiology report during staging of the CLL.
I get muscular soreness on both sides of my neck at the highest point. C3-5.
It is worse in the am and side to side motion hurts worst.
Tylenol, massage and heat work best. I actually just bought a microwaveable rice bag because of this post I LOVE IT. It was a great suggestion. Thanks!
Older post but relevant. I have had 'aggravated ' jaw bones...the lower jaw mostly as opposed to the upper,but has now started in the cheek bones. I get worst pain in my jaw joints,but also lesser pain in temples around eyes and couple spots on scalp. It doesn't hurt to open mouth(wide or to chew).It really must have flared up last night as it kept me awake,I couldn't stand the pressure of my head on the pillow. Any comments will be much appreciated...Cat
Thats how my trigeminal nerve V2 kicked off... upper jaw, over to the nose, down the upper lip over ro the temple/ear and back along the lower eye lid...
I had no rash in the first 12 hours, just pain... when the rash appeared, all hell broke loose... my eye lid turned inside out and the right side of my face dropped ...
Best see a doctor, if it is shingles, and it may not be, you need antivirals as soon as possible
Thank you, Chris, for mentioning the Castor Oil Packs. I got the idea originally from the American mystic healer Edgar Cayce, who used these packs on patients for various congestions in the body (and lymph nodes are in that category). Because castor oil is basically a poison that the body tries to reject, it is useful for getting things moving, like when used internally in the case of a bad constipation. It seems to work even through the skin.
Castor oil packs helped me many times with big, painful nodes on my neck, but I know that they don't work for some people. Perhaps they are too impatient... And yes, Neil, it is messy and smelly, but worth a try.
I am way late in seeing this post (dug it up because i was checking for whether it is advisable to take castor oil internally and wondering if castor oil would act to raise platelet counts?
It is understandable why people use heat on pain in the neck or joint pain, however, I have found ice packs (from pharmacy) are better suitable to my neck and bone related pains. Most nights I sleep with an ice pack in a hand towel at my left back scapular area. That along with chiropractic work has loosened my neck that was appearing to stiffen and the pain in my shoulder. The pain goes around to the axial and subpectoral area. A CT scan mentioned that subpectoral area having "pathologically enlarged nodes" --however, I do not have the same pain on both sides.
I am often sitting with a cold pack on my shoulder and a heating pad at my feet--even in warm weather.
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