I’m on watch and wait atm diagnosed 2 years ago with a count of 7 at the moment
Can any one tell me if this is related to CLL
I started getting throbbing pains at night in my thighs when I moved at night about a year ago it was only when I moved from laying in one position to another this went after a few months my consultant said it was nothing to do with CLL it’s since returning more often but now in the day time too when I sit down and get up and is in the arms too, im confused to what this can be I get normal pain in arm and legs too but the throbbing when I make sudden movement after sitting and not moving my arms for a while also stared pain in lower back and hip too
I’ve seen doctor and they doing blood tests to see what it could be ive been really worried as it not a good quality of life the last six months I’ve been mostly at home because of this
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Kullie1974
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Interesting - OK its fully understandable to try to blame CLL for many of our ailments. But we are still exposed to non-CLL ailments too.
So - when I was in watch and wait I had leg ache for 2 years up to Chemo. Then once Chemo started it abruptly ceased. My Haem Consultant did not know what cause was - my GP the same. Recently I had a GI infection - albeit mild - for 2 days I got that leg ache back. Aaaargghh! its gone since I recovered, but it was the same ache as pre chemo. My theory is that its my reaction to elevated immune system cytokine levels. They cause many of the B symptoms of CLL.
That is is leg ache due to CLL!
I don't know your age - but if over 60 ask your family Dr about Polymyalgia Rheumatica. I had a friend with it - and what you describe above in brief seems similar. This would definitely be for your Family Dr to check. I believe relatively straight forward to treat.
The blood test for this I believe is an inflammatory marker - but not CRP. ESR or PV.
It is important to get doctors to check out symptoms which they don't recognise as part of CLL. Pre-diagnosis, in the cold winter months I was very very breathless when I was in a place with cold air - basically everywhere outside the house! Was then diagnosed with CLL. They saw how breathless I was, and did a heart scan - the ultrasound one, I forget the name - and they said heart was fine, breathlessness was probably CLL related, as I had a lot of enlarged lymph nodes around my lungs. So I pootled on, and although winter was worse, I had it to some extent most of the time. I learnt to live with it. 2 years ago - after 2 years W&W, it got worse, and one day I came home from my sewing group exhausted, gasping for breath, and with pain in one lung. Family history of blood clots, and my cousin dropped dead (literally) with one, hence I am neurotically scared by the idea of one, so I called my GP. She told me call an ambulance, she agreed with my own diagnosis. It wasn't a blood clot, it was a blocked coronary artery aka silent heart attack. They stunted me and I am fine. I am in now suggesting that this is what is happening with you, I am not a doctor or medic of any sort. But my excellent haematologist put my breathless down to CLL when heart scan seemed ok. Ask for a CT scan, which shows the coronary arteries. I have never had high cholesterol, it turned out mine is probably familial, having given the cardiologist the family history. I hope whatever is happening to you isn't to do with your heart, but if it is it is better to know about it.
Could you fill out your profile stating gender, age, other conditions etc. It's hard to relate to a condition unless there is at least an approximate understanding of your specific situation. The responses could vary hugely if they were meant for an otherwise healthy 35-year-old male or a 75-year-old female with multiple health conditions.
Hi Kullie1974, I can relate to your pain, which I have also, which extends to other parts of my body, and which seems to have increased since my diagnosis. I have had all the various checks over the years and nothing sinister, was suggested, or occured. I am 74 so I put it down to natural aging.
It can be quite intense for short periods, at times. But I have convinced myself that it's part of life, at this age. I appreciate that until you can be simillarly reassured, that it's not going to go away.
It might be worth, logging events, by jotting down dates, times, intensity, and what you were doing prior to the pain coming on. then see your GP or Consultant and talk it over, If they are happy, I would be. All the very best to you, and I hope you find a solution.
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