Anyone else get this?

Hi

It will be sixteen years ago this summer when I was first diagnosed as having CLL.

I'm still on Watch and Wait, despite having been given an original prognosis of six or seven years maximum. My White Cell Count at that time was 14+ and for the first few years it steadily climbed until it was in the early fifties.

I didn't have the crucial other factors: rapid weight loss (although I had to eat like a proverbial pig to keep my weight stable) or night sweats.

Then the WCC started to come down and it's now in the early twenties. I count myself as being extremely fortunate. The original forecast meant that I wouldn't see my kids grow up, go through university, get jobs and settle down. I've managed all that and I don't really know why, except that I observe a healthy diet, exercise as much as I can and (and this might be more crucial than I ever imagined) maintained a positive frame of mind. Being a former Royal Marine might have something to do with that, or maybe not.

I'm not symptom free however. Headaches; some really bad, others run of the mill, shortness of breath, and loads of upper respiratory infections. My spleen is a little enlarged, but nothing to worry about at this stage, I'm informed. Sometimes, though, out of the blue, my entire body begins to ache: muscles, joints, and head. Paracetamol doesn't even begin to touch it. I just need to sleep. It doesn't matter what time of day it is, sleep is the only answer. The haematologists appear to be baffled by this. Does anyone else on the site experience it? My guess is that it's my immune system (what there is of it!) is going into overdrive trying to fight off yet another bug, but nothing I've come across on the internet supports this idea.

There seems to be a lot of well informed and knowledgeable folk on this site, so if anyone can come up with an answer, I'd be grateful.

[Carmen11]

I am also W&W only diagnosed 2018 altho had fast rise in blood counts for first 12mths but not quite doubled and has since slowed hence no treatment yet.

I also get severe body pain all over, joints muscles, bones I feel like I'm "seizing up" and need a dam good "oiling all over" to loosen up, I take fast release Tramadol 100mg a couple of times a day and this helps relieve discomfort. I get a lot of body aches and pains which I believe are CLL related altho my haemotologist doesn't give me the time of day to discuss my pain issues I actually use my GP who is so much more approachable and doesn't charge like a wounded bull!

Best wishes I hope you continue to have good health.

[lankisterguy Volunteer]

Hi bootneck & Carmen11,

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Here is a link to all 28 previous posts that mention muscle aches.

healthunlocked.com/cllsuppo...

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I scanned them quickly and most refer to side effects of Ibrutinib or other treatments like FCR. There may be a few for untreated CLL patients.

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I have had reactivations of a virus call HHV-6a - when my CLL is nearing the point of needing treatment I will have wierd cramps in my thigh muscles. Most people have antibodies to it and their immune system keeps it quiet, but it can reimerge like shingles HHV-3 when the immune system is weak or ineffective. There is no cure and no effective treatment for it.

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google.com/search?newwindow...

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Len

[country76 in reply to lankisterguy]

I had cramps in my thighs for years. Recently, I am on Ibrutinib the cramps have left my thighs for the most part and are in my neck, back, abdomen, and upper arms. I take mag/phos salts that help sometimes.

[Hidden]

I have the same uncomfortable total body aches and nerve pain a lot

[goldstream]

I am into my 11th year of W&W. Have enlarged lymph nodes in my groin, which go up and down on a weekly basis. My spleen is like yours - marginally enlarged. My lymphocyte doubling rate is still around 3 years but the level just popped over 60 (60,000 for some people) at this last round of testing which is every 3 months. My other levels are also out of whack, but not enough that my Oncologist is overly concerned. I have had night sweats a few times during the past 3 years, but only when I have some other infection going on and my immune system is working overtime. I certainly have to watch any infections, because they are more work to manage than pre-CLL. As a result, I got the Shingrix shots and usually get flu shots (note: I do not want to catch COVID-19 so have been extremely cautious). I do get sore joints most days which slow me down, but I just try and get out and do stuff like hiking, biking etc (i.e. shift the pain to somewhere else) so I can try and forget about it I will take muscle relaxants if it really starts to bother me, but that is not a regular thing. Fortunately, I haven't experienced headaches at all. I know everyone's experience is different but just wanted to share where I was at, given we seem to be on a similar path. Cheers.

[Hazel33]

I’m 9 years w&w and often get what I would describe as flu symptoms. In fact I’m experiencing this now which, because of the Covdid-19 lockdown, is worrying me.

It happens a lot - body aches, headache, stomach ache and feeling like I am coming down with something more serious. Generally I can sleep it off. My last wbc in January was 80 and I’m told that for me it’s stable.

I’m experiencing this now for the last two days and hopefully it will just go.

I think it is probably one of the symptoms of CLL.

It is strange that the specialists don’t pay much attention to it. Hope you are feeling better.

Best wishes, stay safe

Hazel

[Hidden in reply to Hazel33]

My impression is the hematologists don't listen much to these lesser CLL symptoms as they see lots of people near death all the time who are much worse than our "constant flu"

[Anja-Jantina]

Hi Bootneck, i do recognize pain in joints and bones. I refused treatment as treatments have their sideeffects and i also want to see my kids grow up.

I am no against medication, but as long there is no medication that can heal this disease i prefer not to take it.

So i changed my diat, took a lot of supplements and go 3 times a year for hyperthermie- treatments. My WBC is stable now and the swollen lymphenotes i had everywhere are mostly disappeared, exept for my armpits and neck.

I do not have respitory infections anymore as i do take a lot of antioxidants as green tea, curcuma, resveratrol, vit c, zink, etc

My hematologist warned me for this, but it helped me and did not make my disease worse.

My neutrophile count is a bit low. But i am happy that i am much better than i was. I am able to do more things now. My joints and muscles and bones hurt mostly when i have strained myself to much. And then i do not mean that i have worked out or so. I just have to limite my activities, which is hard for me, as it is not in my nature. But, I cannot sleep then because my body hurts so much. I have to take rest then for a few days and when that does not help i take one tablet of Arcoxia, but not so oft.

I had read somewhere that fasting could be helpful, so i fasted for 6 days and after a few weeks i fasted 7 days. ( with 2 green juices a day ) As a result (surprise for me) the slowly rising b2m marker dropped with 0,4. It did help to reduce the pain in my body.

After the fasting i have been free of that pain for a while. I will repeat the fasting again. First i was afraid to loose weight, but i did not loose so much and regained it. So no problems there.

I do regret that doctors think so much in terms of medication and do not have answers about what causes pains like that.

I cannot say that fasting will be of any help for you. But when there is nothing else that could help, you could also give it a try.

Best wishes.

[bennevisplace]

Headache has so many possible causes, most doctors don't want to know.

I was on W&W 14 years before treatment, and every now and then had a similar set of symptoms to yours, the body says enough and the only remedy is sleep. Variable duration 1/2 day to 3 days. Headache usually on one side only suggests migraines. CLL did not initiate them and although their frequency increased during W&W there may be no connection.

Hope this helps.

[KirbyBH]

I was diagnosed in 2005 so going on 15 years. At the time genetic testing confirmed that I had the "good" kind of CLL according to my Doctor. I am still W&W. Have not had the symptoms you are describing. The only thing I have had for about a year is breaking out in bite like itchy sores. Hemotologists do not think it is CLL related but my Dermatologist thinks it might be. They did biopsy and could not find anything definite. In the last few months the bites have come less often do not get as big and a little less itching. Hopefully at some point they will stop completely. Also there was a study done in Israel I read that said there can be skin type reactions from CLL. I consider myself lucky that this is the only symptom I have had so far!!

[goldstream in reply to KirbyBH]

Kirby, do you use a hot tub? I once had my body covered with an itchy rash, which we finally figured was pseudomonas from the hot tub. I was the only one it affected, even though my family also used the hot tub regularly. Hasn't happened again since I stopped using the hot tub.

[Hidden]

Hi everyone

Thanks for the many helpful replies to my post.

It's reassuring, in a way, to know that I'm not alone in experiencing these symptoms, and that it is not, as has been hinted at by one "health professional" a figment of my imagination.

I guess that on here we're all members of an elite club: a strange term, perhaps, but we're all in the same boat, to put it differently.

As a result, we are able to share our experiences, our symptoms and, in some cases, offer a bit of advice.

Most of the time, I manage to remain upbeat about my condition. There are so many that are far, far worse off than me, so putting it into perspective is pretty helpful. This was especially true when, several years ago, I visited Children's Hospice Southwest. At that time, I was in my mid sixties and I was seeing terminally ill children that were, without exception, so positive and cheerful. It was a humbling experience.

In terms of pain relief, I stay well clear of the opioids. I'd rather put up with the pain than become addicted.

Having PTSD as well doesn't help a lot, but the demons don't come to visit quite as often as they used to do.

So thanks again, guys (that means ladies as well, I'm told)

Stay safe and stay positive.

[carnvellan]

Just found these posts and they are helpful. Much written here could be me. It's reassuring to know that I am not alone. My haematologist is sympathetic and never denies my various symptoms as described here but frankly acknowledges that she cannot help me. Never accept doctors telling you that you are imagining things.