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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 30 minutes ago | Replies (303)Comment receiving replies
I have been wondering about how to ask if anyone has experienced any help at all with the horrible fatigue I've been having with CLL. I was diagnosed in February of 2020 when my WBC started climbing steadily from 10.46 (10,460/L) to 41,430/L today. Lymphocytes started climbing at the same time to 36,620/L today. I had Covid in August of 2021, and was diagnosed with "Long Covid", ME/CFS, and fibromyalgia in October of 2021. Fatigue has always been the worst part, along with weakness and extreme sweating during the day, whether it's cold or hot outside, plus I get mild sore throats and feel like I'm always coming down with the flu. Starting this year, the fatigue has gotten so much worse, to the point to where I had to go to Urgent Care yesterday because I could barely make it from the parking lot to my car at Kaiser. I went back in to ask for a blood pressure check (which was okay), but when the nurse saw the sweat literally pouring off my body and I told her I was having intestinal cramping, nausea, chills and was really weak, all of a sudden there were 6 nurses surrounding me, taking all my vital signs. Diabetes number was high but not alarming. EKG was good. Urinalysis showed UTI and the doctor gave me antibiotics for that and possible diverticulitis. But he said that he suspects the fatigue, weakness, chills and sweating could be from the CLL. Both my PCP and oncologist say there's no way to know if it is from ME/CFS, fibromyalgia, or CLL, so I am left trying to deal with it and not knowing what I can do. So this is my question: Has anyone had any relief from the fatigue, etc., after treatment? One guy at CLL Society said he insisted on treatment even though his numbers weren't indicating it, and it helped with the fatigue, but I read that a few years ago. This fatigue is basically keeping me in my recliner most of the day, which is no way to live!
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@loriskt My goodness, gurl!! You are in a world of hurt right now. I’m glad that you came here to share what’s going on. First, having a UTI and possible diverticulitis can just completely wipe out any last bit of energy you have…on top of fibromyalgia and long Covid? Yikes. No wonder you feel like you’ve gone through a wringer!
Yesterday must have been harrowing for you! But now that you’re being treated with antibiotics I think you’ll start feeling some relief in a couple of days to some of the issues going on.
If I may though, as someone who was on antibiotics for 2.5 years, let me help keep your guts healthy. I’d suggest getting a couple tubs of non-fat, plain Greek Yogurt. You can sweeten it a little with jam, honey, fruit, etc. But don’t buy the sweetened yogurt. Just too much sugar.
Eat 1/4 cup or more, three or four times per day. Do this at least 2 hours after and 2 hours before you have your antibiotics. If you take it too closely to the meds, the antibiotics will kill off the probiotics of the yogurt. This will take planning on your part but it’s worth it to avoid diarrhea issues! Even when you’re done with the prescription, keep up the yogurt another couple of weeks past that! And drink lots of room temp water to keep things flushed…
I’m not sure if the CLL is the culprit for all of the symptoms right now. Though many are common with CLL like night sweats, fatigue, chills. But usually not to the extent that you’re experiencing right now. It may also be from your gut issues and the UTI. While you’re waiting for other members to comment on that, I have another thought.
Since you’re having so many systemic issues happening with long covid, fibromyalgia & CLL I’m going to toss out the idea of visiting a Functional Medical practitioner. Functional Medicine is a science-based, root-cause approach that looks at how your body’s systems—nutrition, sleep, stress, hormones, inflammation, gut health, metabolism—interact. Rather than treating symptoms singularly, this approach evaluates how the whole system functions together.
For some people it can really provide answers to their health issues. I’ve had my own experience with this type of practice and it was so helpful along with my stellar conventional medical teams.
Not sure where you live but here is a guide in finding a clinic near you.
https://www.ifm.org/find-a-practitioner
Has your CLL doctor mentioned a stage for your disease? Have there been any signs of progression with changing blood numbers since your diagnosis?