Bone pain

[Parramatta]

Hello all, I have been in wait and watch for 12 years and so far am stable but I have always had unexplained pain in feet and legs and sometimes in my mid back. I have taken tramadol for a few years now which helps most days. Does anyone else experience this? Thank you.

[SandandWind]

I experienced it pretreatment. I never knew whether it was CLL related or not. I was active and sometimes pushed myself too hard. That being said, post treatment when my bone marrow went from 98% infiltration to undetectable, the pain has largely disappeared.

[SofiaDeo]

I had terrible pain initially, and also use tramadol. Back then (2011) my docs questioned the deep thigh and lower leg pain I had, saying "CLL doesn't cause pain". Yeah, right. It's much less now, I do have fibromyalgia so that complicates the issue. I now take 2 tramadol daily, down from 6, plus Vicoprofen at bedtime. So no more Vicoprofen at bedtime, and 2/3 less tramadol, than shortly after my diagnosis in 2011.

[Parramatta in reply to SofiaDeo]

Thank you for your reply SofiaDeo, I am glad your pain has eased and that is good news that you're taking a lot less pain killers. I too am taking two sustained release tramadol per day.

[JerrysGirl3]

I woke up one morning with neuropathy in both feet and still have it! I also periodically get massive cramping in my thighs down to my feet. And at night I have, what I can only describe as bone pain, in my arms and shoulders. I have been on 5 mg oxycodone 3x/day since it relaxes the muscles in my neck and gave me my voice back after vocal cord was nicked during botched thyroid surgery in 2012. The only thing I drink, after my two cups of decaf coffee in the morning, is water. And lots of it.

[Sepsur in reply to JerrysGirl3]

Magnesium sulphate took away the cramping for me

[JerrysGirl3 in reply to Sepsur]

Lol i take magnesium aspartate and it works. I don't like to take it a lot, sometimes if I am awakened in the middle of the night by the severe spasms I will take them, because I noted my magnesium blood levels were in the high side.

[Parramatta]

Hello SandandWind thank you for your reply. I was thinking the same thing that if I have treatment down the track that the pain may subside. My infiltration is high also. I am pleased to hear you had a good result.

[Ironj]

I have back pain mid and lower as well as the bone below my knees. I’m not sure if it’s from SLL.

[Pearlpink]

I too get bone pain. Mine gets much worse if I don’t take vitamin d everyday, or if I’m anaemic. I’m a bit bad at forgetting to take my vitamin d tablets. I can always predict when my vitamin d is low because weirdly I get pain in my forearms and ankles! I was shocked at how low my vitamin d was years ago, long before CLL . I have a skin condition that is exacerbated by sun (plus CLL now) so I suppose my vitamin d deficiency is not surprising really.

I also get those weird thigh pains but it’s very variable. I have become like “the princess and the pea” regarding how comfy my bed is! So fussy! I do find I can’t sleep in a firmer bed.

It’s so interesting to hear from others about the symptoms everyone is getting from the CLL. There is a tendency amongst some of the members of our medical teams to dismiss them as not being part of CLL, but we are all describing variants of the same.

I, personally, am lucky with regards to pain. Mine is not severe, and is very manageable. My CLL picture is dominated by fatigue and I will be treated because of my very large spleen, rising count, and worsening fatigue. If I try to push beyond my limits I am halted by severe back pain in the loins and pelvis (I don’t have vascular problems). It is literally as if I run out of fuel!

As so many people have said on this site, CLL is so different in everyone. But it’s very interesting to hear that we often share symptoms such as bone, back, and thigh pain, but to varying degrees. It really helps to hear it when we are often not believed!

[SofiaDeo in reply to Pearlpink]

Can you get a prescription for Rx Vit D that only needs to be taken weekly? Those are a gelcap too so less excipients than a tablet, to affect your gut biome.

[Pearlpink]

Thank you!

[Horatio2]

I have mid and lower back pain as well as leg and thigh pain. I am still in W & W, and I hope that when/if I have to have treatment, the pain will subside. I know I am getting older (55 years old in a month), but I don't think age is the only contributing factor.

[CycleWonder]

I had lower back pain that turned out to be mild arthritis. I had some steroid shots in my back (3 on each side) and then started PT to strengthen my core.

My thigh pain has disappeared with the PT exercises. It turns out that my knees are very strong but my thighs were not. And of course, my abdominal muscles were weak.