Our health system though it has considerable benefits, has its limitations, especially around patient information. I am a 48 year old who is experiencing an unwillingness by my haemo's to accept the additional discomfort of quickly progressing bone pain, I often feel that they look at me as if I am imagining it! Night sweats and fatigue I accept as normal evils I live with, because early therapy is not a wish of mine. Holding off as long as possible is the policy I wish to follow, knowing that the first chemo tends to be the most effective and that respite is something to look forward to.
The bone pain issue is at the heart of my concern, it appears that many of my age group in the UK are experiencing this, and or combined with quickly progressing early onset of OA. I understand that the highest populations of CLLers are elders and these symptoms and conditions would normally be present. Have you experienced or heard of this within the wider CLL population. We as a whole are a relatively small community and age bands further reduce our numbers so any observations you can offer would be of interest.
Pain discomfort is a difficult topic as we all seem to have different thresholds. I think that when your limits are tested you may consider any thing that will provide even temporary respite. I have remembered that when my mother was troubled with pain during her fight with bowel cancer, that she swore by acupuncture, I know in hindsight that her's was a little more extreme, so I "poo pooed" the therapy as a placebo and was just only too pleased that she felt that it helped!( perhaps I was wrong)?
Exercise seems to have two sides: It seems to aggravate joint and bone pain and increase the effect of fatigue, but is always uplifting even if you suffer afterwards. So manipulative therapy’s something I try to self regulate. But this does bring me to another Question/topic: As an avid gardener whilst tackling work on projects according to my physical ability at the time, I have noticed that the summer sun played a major part in reducing my discomfort last summer,
Now as a new member I am encountering the latest "buzz" around the benefit of maintaining your vitamin D levels. As my bone pain is increasing rapidly and there is a deficiency of sunlight, especially here in WALES in the winter perhaps this is playing a part? I know my WBC count was much more elevated last winter and peaked in the 9 to 10 range. But it settled back into 6 to 8 during the summer. One of the results of gardening is an excess of fresh fruit and veg, plus the suntan! So perhaps this lends a little weight to both diet and vitamin D as major influences in managing my CLL symptoms? The thing is we all have formed opinions on what we are willing to consider and we won't cross those boundaries unless we can see reasonable proven evidence of their benefit. In my case that normally needs to be accompanied with an actual explanation as to why it may work.
New friends have already given me lists to aid me in my research and I will continue to digest things at a pace my mind will allow. Although I feel that the CLL may be "ramping” up a little again I will not be blinded by the "quacks" but am willing to consider most experiences at face value. I am due a 3 monthly visit to the hematologist,
