My Dad, aged 79 is on W&W, but has recently been having some joint pain and episodes of feeling a bit more tired. My parents and I have been shielding since March and I know that this has had an impact on their motivation, so not sure whether this is due to limited exercise and not being more active and out and about or if this is signs of anything else.
If anyone could please share any feelings they have felt whilst they have been W&W that would be appreciated.
Thank you
Written by
ButterflyRose
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I’m sorry your Dad is finding this hard, and I can only share that I have lost a lot of motivation - get up and go - during this period, which leaves me feeling tired, along with having to really make myself do a little exercise (not enough!) for joint health.
If you are still worried, please contact your GP or CLL team.
I too had fatigue, joint pain whilst on watch and wait. It was hard to get mobile. Perhaps your dad could do some small exercises. If he is not too mobile there are lots of gentle exercises he could do while sat down. They are mainly stretches to awaken and loosen the muscles and joints. Try sat down exercises for the elderly on you tube. Hope this helps.
I'm a senior citizen with blood cancer and I, too, am experiencing pain in my joints, particularly my knees and even my shin bone on my left leg. My Dr. prescribed me a knee brace, which I use when needed, to walk. The brace gives the knee time to rest and heal and then I can walk with out it. I try to walk without it as much as possible to keep limber and moving parts moving.
For immediate relief from joint pain, my Dr. prescribed me Voltaren Gel (diclofenac sodium topical gel) 1%. I rub it all over and around my knees, especially around the knee where everything connects. Using it like that, I'm applying more than prescribed, but the pain relief begins within minutes and lasts for hours. I only use this as needed, which means only when the pain is interfering with walking or I feel I could be doing more damage ignoring the pain. I don't want my body to get used to it to where it doesn't work well anymore, that's why I try to use it sparingly, but apply a fair amount when I do use it. It used to be by prescription here in the States, but now it's over-the-counter. I definitely recommend it for joint pain from the great relief I've gotten from it.
Thank you Hidden for your reply. Will order some Voltaren Gel for Dad and similarly to you he is restricting taking something like paracetamol all the time, just when he really needs it.
It’s great to hear you are keeping active and motivated as best as you can and will share this with my Dad as some inspiration.
I can only relate to you what I feel like, and it isnt any different from your Father. I am now 73 and have alot of joint pain and fatigue, and I've been on Watch and Wait since April 2018.
The joint pain is something I've had for years, and it is getting worse, but that is what I expect from aging and not from CLL. These days when I get up from a chair the pain in my right thigh area is getting to be significant. I havent looked into it, and just accept that I'm getting older.
Fatigue is another matter, and from what I've read on this site I am the same as most others in Watch and Wait. I get more tired each few months that go by. Lately it seems that I wake up and have Breakfast with my wife, and then I really feel like I need to lie down. If I lie down for only twenty minutes with eyes closed, then I'm good to go for a few hours at my computer. Then I usually need another rest like that in the mid afternoon, and then late afternoon, but it seems like twenty to thirty minutes brings a world of energy back each time.
I've noticed the lumps on my neck and in particular a big one over my left clavicle are getting bigger. Now i feel smaller ones around the back of my head closer to the neck. I assume my lymph nodes are enlarging, which I guess is part of this disease. I notice that once a week I seem to have sniffles and aches and pain, like I'm about to get sick, and the lymph nodes enlarge alot. During those times I am much more fatigued than the routing I described above on other days. Then that passes within one day, and the sniffles are gone. I assume this is happening because our immune systems are getting worse and worse. I'm guessing that bacteria that live in our bodies and never bother normal people, because stronger immune systems always keep them at bay, are now beginning to fight back more with my weaker immune system. When this happens I notice i sweat a lot more at night, and my body seems hotter. This would match with my weak immune system fighting back, and the body's effort to fight by raising its own body temperature. I'm guessing at all of this.
In any case I understand your worries about your Father, and he is lucky to have you there concerned about him. Hopefully my added information will help you and him, because I expect your Father is already experiencing some of this or will likely do so.
Carl, your symptoms are familiar. You sound like you're handling the fatigue better than me. Hearing about your lymph nodes is concerning. I hope you're able to get a safe blood draw soon for some blood work-up. Best wishes, Carl!
Please keep us informed. I hope the Drs. do something to improve your situation with all that's going on with you.
Thank you for you message and apologies for the delay in my reply.
Your experiences shared about the way you feel echos how my Dad feels most days. I try to keep him motivated by saying aches and pains are part of his age, but try not to push him and let him take his time and feel comfortable. It has been difficult during this time of lockdown as not getting out so much means that the aches and pains are more visible.
Thank you for the descriptive information you have shared as being able to understand that others feel a similar way is in a sense a relief as it's easy to think you are alone in this situation.
I am so sorry to hear about your Dad's suffering. I understand because I am same age & have been on W&W for 7 years.
My experience, for what it is worth, is that, Yes, lockdown has meant we have more time to worry and so get demotivated & so joint pains get worse. I have a house & garden to upkeep single handed & fields & woods to walk in outside my door. Yet, the mental battle gets harder to keep active.
For me Tai Chi (also Qi Gong, a gentle form of Tai Chi) exercise has been my saviour. You Tube has people giving lessons free in this form of exercise. For me, this form of exercise is gentle and really helps to release the pain in the body. It does not claim to cure, but to make life bearable for whatever you are going through. Also, it does no harm.
I have my favourite instructors on You Tube, but each person can find the one that suits them best. (I can let you know my choice of instructor if you wish).
This form of exercise keeps me motivated to keep going & makes the pain bearable.
I wish your Dad well in his battle and hope he stays strong.
Thank you for your message and apologies for the delay in replying.
Thank you for the Tai Chi recommendation, I have been trying to encourage Dad to join me by doing some Yoga and breathing exercises and this has helped with the mental health side of things during this time especially. If you could recommend your Tai Chi instructor of choice I would really appreciate it please?
Thank you so much for your kind words, I really do appreciate them x
Thank you for your reply. I am pleased you and your Father are doing Yoga breathing exercises. They are so beneficial.
My favourite Qi Gong (Tai Chi) teacher on You Tube is Jeffrey Chand. He explains everything so well and has routines for all kinds of problems - i.e. for back pain, for sleeping problems, for anxiety, and many, many more.
I hope you will enjoy his teaching & benefit from it.
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