Leg pain

[Packers46]

Does any one else have really bad leg pain with their CLL/SLL?

[GMa27]

Would get cramps on and off. Magnesium glycinate 400 mg twice a day worked. Weened off after 4 months. Went back on it 3 years later when it returned. Weened off again. I use a small bar if Ivory soap under the fitted sheet by my legs. It actually works. Try it.

Some use Clartin without D to help with bone pain. 💕

[Packers46 in reply to GMa27]

Really soap under the fitted sheet at my legs. Do i out it under them out when, and how did this actually do anything. What does it do? That is there weirdest remember i I've ever heard but if it works I'll try anything. Thank you for telling me. The Claritin d allergy needs help with bone pain? I take Benadryl every night for allergies wish it helped but i may switch and see if it also covers my allergies but will take both if not if it helps my bone pain. Thank you very much!

[Packers46 in reply to GMa27]

Alos, I wasn't trying to insult you at all with the wierd thing comment. Just saying it's odd and nothing against you at all. After i posted it i realized it came across a little snotty. Sorry about that. Want meant that way at all!

[MsLockYourPosts Passed Volunteer in reply to Packers46]

Packer - Plain Claritin, not D ( cough suppressant added). It doesn’t work for everyone, but seems to help many. When you talk to your doctor about it be sure you ask about taking it with Benedryl. Claritin is a 24 hour, time released medication. You don’t want to end up over medicated. I asked my hematologist about taking it twice a day to control allergies and got an emphatic no. He would only consider that for a severe drug reaction.

As for the bar of soap (some say ivory soap) even doctors have suggested it, saying that they have no idea why it works, but that it definitely seems to for some people. It’s about the only idea I’ve seen, over the years, that leaves me comfortable saying,”It can’t hurt.” - unless it ends up on the floor and you slip on it.

I had bone and joint pain before treatment. Testing my vitamin D level showed I was very deficient - also deficient for B12. It took some time, working with my doctor, to find the right supplement doses for me, but getting those into a healthy range seemed to make a difference. Have you had your B and D levels checked?

For cramps and / or joint pain there are other old remedies that various people swear by - a spoon of mustard, pickle juice, tart cherry juice, tonic water, potassium or magnesium rich foods or supplements. I’m picturing my stomach reacting if I tried all of these at once. Even foods can have negative effects (my kidney doc. wants me on a low potassium diet). It would be worth passing these ideas past your doctors. Most of us have added health issues that make some things not advisable.

There are meds that seem to help some with neuropathy. I react very badly to

All of them. Oh, well. I hope that you find some answers!

[GMa27 in reply to Packers46]

I did not take it wrong at all. Whenever I suggest it, I kinda laugh and wait for the reaction. I have no idea why the soap works. I heard about it years ago unrelated to CLL. Then my acupuncturist suggested and when I posted it on CLL sites, a few had heard of it also.

In fact, when I forgot to bring it on vacation to my daughters house, my leg cramps came back the next nite. I got the soap 2 days later and leg pain was gone!

I sleep on the right side (facing bed) of my king bed so I lift the fitted sheet, slip the soap towards the edge (3-4 inches in towards middle of bed). Towards where my calf lands while sleeping. Enough to not be in the way. I do feel it once in awhile if I lean towards edge. It does shift around. LOL. I push it back with my hands or feet back to position. It just stays there till I change my sheets. Then I start over placing it under the laundered sheet.

The Claritin without D was discovered by accident. People who took it for their allergies reported to doctors that their bone pain, leg pains were gone. So I guess word got out that it would help for pain. Something to do with targeting nerve endings.

You mentioned taking Benadryl. I wouldn't suggest taking them together. Discuss with ur doctors. Benefit of Claritin is that there is a non drowsy form but Benadryl does not have a non drowsy option.

Good luck! 💕

[Packers46 in reply to GMa27]

Glad you didn't take that the wrong way. It meant as funny. Im definitely going to try it. It can't hurt. Im not mentioning it to..i my current oncologist, he's a jerk. Thankfully he's leaving in a choke if months so I get a new one after tomorrow so I'll mention it to then next month. Mine had no compassion at ask ans swears that my leg pain and bone pain isn't my cancer that he's braver hearted of that with CLL/SLL. That's one reason I asked. He acts like I should have no symptoms at ask but apparently he does think I have cancer since he's had me on the imbruvica. I don't his what his deal is. But neither my wife or I like him. It's an answer to prayer he's leaving. I have tti see him tomorrow unfortunately. Im a nervous wreck every time I set him. Definitely going to task to..i my next one though about those things and walt on the claritin until I taking to dr about it. The soap thing is pretty funny but if it works I'm all for it. Thank you again. I hope you're doing well with your cancer. Hang in there. We're all in this together and I'm so thankful to have found this group!

[GMa27 in reply to Packers46]

Glad ur getting new doc. Mine is great, kind and professional. No one should dread or be afraid of any doctor.

I am so grateful to be in remission 20 months! 💪🤞🙏💕

[MsLockYourPosts Passed Volunteer]

Are you talking about joint, muscle, or nerve pain in your legs? Your profile says you started Imbruvica. Are you still taking it? If so, what dose are you currently taking? Many have reported pain related to taking imbruvica. A little more information about what you are experiencing will help others share their experiences related to your question.

[Packers46 in reply to MsLockYourPosts]

I'm taking a break from the Imbruvica right now because i got cdiph. I see him tomorrow and he's_said he's going to restart my Imbruvica or try infusion chemo. Hoping for just the Imbruvica. I have neuropathy in both feet and legs but have diabetes so not sure if from that or the cancer. I have none pain which sounds word I guess but my shins actually seem to hurt. I also get really bad leg cramps almost like Charley horses but worse. Also my legs in general just ache constantly. That's the only way i know to describe it. Thanks for the advice on giving more info.

[Die-Hard in reply to Packers46]

I have CLL and diabetes also, currently taking imbruvica 420 mg. I wake up at. night with leg cramps, potassium seems to help, I get mine from bananas or orange juice.

[Packers46 in reply to Die-Hard]

I don't a glad of orange juice a day but it doesn't seem to be doing anything to help. How much to you drink and how may banana to get what you need to get this to call down a little. Anything relief would be nice. The pain needs take the edge off but that's about it.

[GMa27 in reply to Packers46]

Check ur Potassium levels. That could also contribute to pain.

[Die-Hard in reply to Packers46]

Just a glass of orange juice and a couple of bananas a day, if your potassium is low.

[Horatio2]

YES!!! However, I have not had any treatment as I am on Watch and Wait. I have only been recently diagnosed, and with this panademic, I have not been able to go to my GP to discuss possible reasons why. I would love to know if others who have not started treatment also have leg pain. It is not cramps. My legs simply hurt all the time, and I find after I have sat for a while, it is difficult to stand up and walk without pain.

[Packers46 in reply to Horatio2]

I had the same thing long before i knew i had CLL/SLL. My Dr said based on past blood work and ct scans I've had it for at least 6 years but was only officially diagnosed last June 2019. Not sure how they missed it if they can see it now. Anyway, yes i had to the constant aching in my legs and trinkets getting up and walking week before treatment it even diagnosis. I was attributing to the fact I'm getting older at 46, guess i was wrong. Hang in there. Hopefully you'll be able to stay in watch and wait for awhile. Watch for night sweats. That's when my Dr started my treatment but i had already been getting them before my diagnosis so i skipped the watch and wait part unfortunately.

[Newcastle1962 in reply to Horatio2]

Hi im watch and wait diagnosed 2016 aged 55. I suffer from leg pain mostly at night. Its like a dull ache and horrible. One leg seems worse but its not a strain etc. Ive had it on and off for a long time. Ive been low at times on both vit b2 and D.