I posted a few months re joint and muscle pain wondering if it could be connected to being on Acalabrutinib. The first pain was in left leg and I think that's what has caused the sciatica I now have in my right leg. Think I must have been walking in a way to cause damage to sciatic nerve. No back pain, all in leg and pain can be quite horrendous some days.My question is - has anyone had acupuncture while on Acalabrutinib?
I have been told No by hospital due use of needles but am desperate to try something to get rid of pain and feel normal as it's been over 4 months of suffering. Thanks.
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Westie11-
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Hello Westie11, I am sorry to hear about your pain but its well known with the BTKI Therapy. Acalabrutinib is mostly associated with near debilitating headaches but the bone/joint/nerve pain is very real too. I don’t know about Acupuncture either because of infection risk & now you’re even more susceptible.
I know that many swear coffee helps but I can’t drink it because it causes me palpitations. I do know drinking 1gal of water daily helps. Just fighting through the initial pain & you can walking it out works. Keep your weight down or lose weight & that will help as well. I have an amazing Homegym & the stretching part is what is keeping my sanity these days. The Vibration Plate helps & stretching with the stability ball was amazing. I had some shooting nerve pain so the Pilates Wheel was able to further aggravate my Lumbar Pain & the Stability Ball just shut it down Hallelujah 🙌🏾
Pilates Wheel, Stability Ball & Lifepro Rumblex Max 4D with 3 Motors
For a few years. I didn’t understand that it was nerve pain until last year. I had pain deep in my thigh and one day I noticed that I was tensing up my muscle in anticipation of the pain on a walk. So, I tried to relax my muscle before stepping on that leg. To my amazement, the pain went away.
I figured out that stretching my hip regularly relieved the pain. If I miss doing the stretches, the pain returns a few days later.
I will research stretch exercises for hip. I was given exercises to do but its pain full trying to do them. I was pain free for 14 days then it came back last Monday and has been agony every day since. It is even worse trying to turn over in bed, my buttock feels like it weighs a ton!! Thanks again.
Thanks but been told by hospital only a gentle massage so that wouldn't get to the area that is causing pain. I feel everything that would help the hospital says no to. Massage would cause bruising but personally would rather have some bruising than the pain!!
I have chronic hip pain not due to drug therapy. I have used chiropractic adjustments, and they help. My favorite stretch is as follows (provided by my chiropractor and PT):
Lie flat on a bed, and hang your leg over the side for a few minutes. The bed needs to be high enough that your foot does not touch the floor. Then, change position, and hang the other leg.
Additionally, you may try to gently move the hanging leg toward your upper body.
Hello Westie, I was diagnosed with CLL 2013 and have not had treatment yet for it. I had a bout of sciatica for nearly two years and was desperate to get relief. Acupuncture finally got me back on the road to feeling better. Initially I went in every two weeks for several months and was told that it would take several months for it to take effect. This proved to be true. I also started doing PT stretches for sciatica every morning. You might have a podiatrist look at your shoes and your walking gait to see if that is part of the problem. Also, my doctor put me on Gabapentin which I take at night to ease nerve pain and get a full night's rest. Be patient with yourself...this will go away eventually. I send healing thoughts and will be thinking of you. Best, RW
Thank you. I am probably not walking properly due to the pain but normally I feel I would walk with straight back and enjoyed going on walks. It's not just in my nature to not be able to walk and go where I want. Just so many treatments available and i have been told no to them.
I did acupuncture and massage during treatment with Acalabrutinib. My CLL Specialist knew and had no qualms. I believe massage is good for blood flow to injured areas, and relieves the supporting muscles and soft tissues that "compensate" for the poorly functioning ones. I am no longer in CLL treatment but deal with much body pain so I understand your search for relief. Blessings to you - I hope you find something that works for you.
Many thanks for your reply. I may just try a massage first as I have a lady who comes to house and will not be putting myself at risk by going to a salon with other people there.
Hi, I have just been diagnosed with sciatica, having suffered with PMR for the past year and am not sure if they are related or not. All I can say is the pain has been unbearable especially at night time. I have diazepam, tramadol and Naproxen, all of which has helped a little but really not sufficiently to totally ease the pain. Mine is in the right leg, thigh, upper thigh, leg knee and lower leg, also at times cramp in the foot. I started by feeling I was walking slightly flat footed on this leg and it gradually got worse from then on. Acupuncture has not been mentioned to me. I am seeing a specialist next Friday so helping for some more help and advice then.
Thanks for your post. My pains are in same place although not the knee. Also more of tingling and pins an needles in foot and lower leg. Very painful and especially when trying to get to sleep. Please let me know what your specialist recommends. Hope you get relief soon.
Hi Westie! Your post was a while ago, so hopefully this is all sorted out. But just in case... "Sciatica" is a description specifically for pain and inflammation along the Sciatic nerve. Sciatica is a not a standalone condition to be treated. Sciatica is an effect which won't go away until the CAUSE is treated. So instead of focusing on making the Sciatica pain go away (which IS horrendous... I used to have it too), the only workable strategy is to focus on making the CAUSE of the Sciatica go away, which will then allow the Sciatic nerve to heal. But if the cause of the Sciatica isn't eliminated, the Sciatic nerve will never be able to heal and there is no amount of pain meds that will make Sciatic nerve pain go away. It's too big and it's too intense. You can get more info on the SciaticaPainStop site if you're still suffering with Sciatica. I hope this is helpful!
Thank you for for your reply. Thankfully the pain has gone and I am being very careful just to do a little gardening at a time so it doesn't come back. I have no idea what caused it so wouldn't know how to treat the cause. Any idea how you find the cause??
YAY! It's good news that the pain is gone! If it was me, I would want to find out what the cause was because then there are preventative things you can do to make sure you don't compress, irritate, or injure the Sciatic Nerve again. Personally I would start with a chiropractor who is experienced in dealing with Sciatica. You can go to the SciaticaPainStop site to do a search for a Sciatica chiropractor in your area. Good luck and YAY for no pain! 😀
unfortunately, I have had a lot of muscle and joint pain since starting acalabrutinib. I go for acupuncture treatments once every 2 weeks and they seem to take the edge off. I still suffer from joint pain, but at least I can make it up the stairs now. My dr told me as long as my platelets were ok I could get acupuncture treatment. I’ve been treating for a year and I haven’t had any negative effects. I also get a message every now and then, which really helps., and hot showers always feel good.
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