CllcanadaTop Poster CURE Hero11 years ago

Hi Mairin

Bone pain has been anecdotally reported by CLL patients over the years, but it isn't classified as a side effect of CLL, like perhaps fatigue or nightsweats...etc.

There is so much about CLL that is still unknown unfortuntely... might be an auto immune response, hard to say...

NewdawnAdministrator11 years ago

Mairin, the one thing that never ceases to surprise me are the number of CLL posters who report joint and muscular pain. Myself included. I'm 9 yrs older than you and did have O/A pre-diagnosis but since diagnosis, I've been very aware of muscular as well as joint pain particularly in my arms and shoulders. Some days it can be difficult to lift my arms without pain. I was diagnosed 6 months ago with CLL and live in your neck of the woods (but prefer not to be too specific for obvious reasons of anonymity).

I can't offer any scientific data to support a link to CLL but I do have a strong sense of a link from the overwhelming reports I've read from fellow 'sufferers'.

Have others noticed this I wonder?

Newdawn x

HAIRBEAR_UKFounder Admin11 years ago

Hi Mairin welcome.

coincidentally I am looking at a letter on the desk in front of me inviting me to an appointment with a Clinical Specialist in the Musculo Skeleton Team.

Not long after diagnosis (three years ago) I went looking for info because of bone and joint pain and an early diagnosis of OA. I've now just kind of got used to it ( I do what I can when I can and keep moving) but can't really pin it down to any thing. But it did come with CLL and I guess I am also at the age when it may be expected to appear too (47 at diagnosis),

However this year I have slowly developed problems with my shoulders (over 8 months) in what appears to be connective tissue, the CLL consultant doesn't think it has anything to do with CLL. Will let you know what the Musculo Skeleton Team decide. If I'm honest I'm not confident having been bounced around before.

Nick

Hidden11 years ago

Hi Mairin,

My Haematologist referred me to a Metabolic Bone Disease specialist last year, as I had suffered from generalised bone pain for a few years....which literally was becoming a very irritating pain in the neck!

After numerous tests - most of which were inconclusive - she concluded that she felt it was more of an auto immune response [as Cllcanada mentioned above] as I have a plethera of auto immune problems and it may also be linked to my low vitamin D levels. I was prescribed a Vitamin Supplement and a course of theraputic massage and I am pleased to report that my bone pain is now virtually non existant.

Going for walks most days has also helped - not only with the pain but does on occasion reduce my fatigue levels.

Best wishes

Jo

kavidacat11 years ago

I have bone and muscular pain but I don't associate it with CLL (or SLL which I have) as I was diagnosed with Cervical Spondylosis 30 years ago. This affects my neck, shoulders and arms and varies from day to day. It is a degenerative desease and has worsened over the years. It is down between my shoulder blades now and can become completely crippling in some people. I hope I am not one of them! I also had Poly Myalgia Rheumatica diagnosed in 2000 which is Inflammation of the Connective Tissue, the muscles and tissue around the joints. This also affects my top half but my legs and hips as well. I take steroids for the P.M.R. - the only solution for that - and painkillers for the rest. I have learnt to live with it as there is no other option, but it's not nice! My SLL was diagnosed in July this year and I would appear to have had it since 2009 so I don't think there is a connection, just a coincidence. Just my thoughts on the matter but hope it may help. x

jangreen11 years ago

Hi I too have bone and muscle pain. Again I am told that it is nothing to do with CLL by my Consultant. I take painkillers at night when the pain stops me from sleeping. During the day I have just got used to it and have learnt to live with it. As so many people report these symptoms it would be more appropiate for Dr's/Hospitals to say that although there is no research in this area it becomes medical observation and stops people from feeling that its just them whingeing.

Hidden11 years ago

I mentioned that have increasingly experienced bone and muscle pain to my Haematologist and was told "You don't get bone and muscle pain with CLL".

End of conversation.

hammyj11 years ago

I am so glad I have read this. I have CLL and during treatment in 2010 I had excruciatingly bad bone pain in my left shoulder; so bad that any movement hurt. My GP gave me tramadol which helped at the time but I now have fairly constant ache in my left arm/shoulder. My specialist told me it was nothing to do with CLL.

I do go to the Chiropractor which helps more than anything else but I think it's something I have to live with.

welshlady52 in reply to hammyj11 years ago

hi i am new to the site,i was diagnosed with CLL almost 4 years ago,i am on watch and wait...i also have terrible pain in my shoulders and arms...especially in the crook of my arms....doc said it was spondylosis,gave me tablets, seen my specialist last week and he also said its nothing to do with the CLL...so i really dont know

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gazzz11 years ago

Hi There i had the same symptons and went to hospital had all the tests but came back all clear , it took weeks to clear but pain killers helped , Ihad C.L.L in 2007 and had treatment in 2010 (6 months of chemo) but keep strong Gazza

RobertM11 years ago

Hi, My CCL was discovered when I underwent a series of tests because... I had shoulder and upper arm pain which just wouldn't shift. I also feel uncomfortable in the armpits although my glands are still small here. Met by a shrug of shoulders at both GP and consultant... Have to agree with jangreen!