Aching all over!

[boydthedog6]

Hi, I'm on W&W but I'm unable to sleep due to my whole body aching so much, I'm totally stressed out. I know some of you have stated that you also have aching limbs, but what can I do to ease this?.. do I need to take painkillers or change my diet?? Any information would be appreciated.Thanks

[Cammie]

Hi Boyd

Have you reported this to your cll doctor?

There could be numerous reasons you have this problem and it may not be due to cll?

What stage are you in?

Have you had treatment recently?

What are you last bloods?

It's very stressful when you can't sleep and things build up on you after a period of time. I fully understand your frustration as I had several weeks of this problem during treatment with FCR appreciate your in w and w though.

Try and relax but do report the problem.

Best wishes

Geoff

[boydthedog6 in reply to Cammie]

Hi Geoff, Thank you for your response.

I'm in stage 1 .... had no treatment and was told my counts were stable at my last hospital visit, 2 months ago.

I'm a female age 53 and post menopausal, so this was not causing my aches and pains... I've had several scans to monitor my spleen, but everything looked fine.

My General doctor gave me 200 painkillers ( paracetamol) to take 4 times a day. My Oncologist said to contact them if my nodes swell up.

I don't know what to do! ..

[Cammie in reply to boydthedog6]

My advice would be to discuss the problem with you heamotologist or cll doctor informing them about your GP prescribing paracetamol.

If nothing else it will put your mind at rest and they will be aware of your concern and the fact it is upsetting you.

Hope this helps

Geoff

[boydthedog6 in reply to Cammie]

Thank you for your response, I'll make an appointment asap.

[MsLockYourPosts Passed Volunteer in reply to boydthedog6]

Have you had your Vitamin D and B6 and 12 levels checked? I had bone pain and joint pain. I was very surprised to find that both my D and B12 were very low. Since getting them into a stable, healthy range, working with my GP with tests every 3 months, I have found both to be greatly improved. My bone density also improved. I can't prove that the supplements are the reason, but my doctors all consider having those numbers in a healthy range to be important, and I'm happy with the result.

Stress could be part of your issue, so it is important to bring that up with your doctor. You might also ask if the pain could be caused by some degeneration of the spine and not related to the CLL.

Pat

[boydthedog6 in reply to MsLockYourPosts]

Hi Pat, Thank you for your reply, I can relate to so much of what you've said. I've been going through a lot of stress lately and I also have a lower disc problem that was diagnosed 3 months ago too.

My Oncologist found this problem and told me not to lift heavy items, but no treatment was recommended. I never thought that this may be the problem. I didn't even have a follow up with my general Doctor, that's how it is here in the UK!

You have helped a lot, Thank You xx

[DocM]

I feel for you boydthedog. Last year, that was my story too. Luckily my best friend had a similar problem with pain from a different issue and so we could FB message each other during those early hours of the morning/night when everybody else is sleeping. It helped to not be alone in the pain and being awake because of it. Now into my 5th year with CLL, the fatigue has surpassed the pain and I'm on the other side of the fence....sleeping all the time. Wild horses can't wake me up. I need a Red Bull just to get my butt out of bed and another one to keep from falling asleep in my mashed potatoes. Maybe my body is just catching up from the pain years. It's a balancing act I guess and not fun at all. make the most of it B, the ride doesn't get much wilder than this.

[boydthedog6]

Docm, Thank you so much, this has put my mind at rest. I'll look forward to the future! x

[kitcat49]

Yes,I hurt too,but atributed it to fibromyalgia and osteoarthritis,take your pick. They too are autoimune issues that I have been diagnosed with. Mention this to your Dr

[diverl]

55 year old female in wait n watch also. DX Feb '15. My bones ache too. Mostly my legs (new symptom). But, I also have additional old chronic pain in the neck (ha, long story short - drunk driver t-boned me into a light pole).

I've just recently started upping my D & B vitamins. Glad to hear they're working for others.

It's the fatigue that's gets me the most right now. Plus, it seems I get fevers at least a couple times a month. I sleep a lot too.

It's horrible to say there's others in the same boat - I'd like a new boat please. Where I can wake up rested again.

[AussieNeil Partner Administrator]

Diverl, I've been there without the bone ache. I suspect some of your fatigue is caused by your body fighting infections so often. Carefully review where you could be exposing yourself to infections and pay more attention to washing your hands whenever you think you could have touched a surface regularly touched by others. Also, when you find yourself getting fatigued, try and go for a walk or engage in some other form of exercise. You may be able to work through the fatigue, but I know that sometimes you just can't do so and have to grab some rest. I found that until I boosted my vitamin D, I was just getting nowhere trying to have productive afternoons, but it was the overall combination of infection avoidance, vitamin D and slowly (and I mean slowly) increasing my amount of exercise gradually gained me more of the day when I wasn't too fatigued to achieve anything.

Neil

[diverl in reply to AussieNeil]

Thanks Neil. Ive been thinking about where I've been (I'm such a home body) that I realized a couple days ago when I went to pain management for a chronic dislocated sternoclavicular joint (trigger injections). It seemed the office had an endless amount of doorknobs/room to go through. I'm thinking that might've been where I picked something up.

Nasty outdoor bathroom too. I *DID* wash my hands there, then opened the door with my paper towel.

Hand wash, hand sanitizer, has been my mantra, but I think I goofed that day.

Wishing everyone well.

[jangreen]

Hi I can relate to the pain and not sleeping. I used both anti-inflammatory painkillers and sleeping tables also I have used meditation and healing. I always have to pace myself and find if I don't I pay the price. I think it's a question of finding what works for you. Best wishes