hi everyone hope you are all as well as you could be!!!
I’m struggling big time now! I have a strange situation which I wonder if anyone else has?
I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told although I feel very poorly and my life has ground to halt mainly!! Due to feeling poorly every day , very weak, I get pain , had to give up my job and struggle even to shower!! But apparently it’s not the CLL!! And to go back to my GP to get answers . Apparently all my tests just show low grade leukaemia and so was told if I was given treatment to reduce the CLL he doubts I would feel any better! The consultant has been a specialist for 35 years and has never met anyone feeling like I do with my level of CLL, he did say if GP draws a blank too he will offer me treatment possibly and will be shocked if it makes any difference! Obviously I feel very relieved my CLL is at such a low grade but so upset now as I was hoping for treatment to get me back to feeling a better quality of life again!
thank you for reading my message and any answers are very much appreciated xx
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Dragonfly766
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Fatigue which can't be explained by other factors when we have CLL is a valid reason for treatment. It needs to be fairly severe and unfortunately you seem to meet the criteria. Per Table 1 2018 International Workshop on CLL (iwCLL) guidelines on indications for treatment, parameter Constitutional symptoms, iwCLL indications for treatment, Disease-related symptoms (b) nature.com/articles/s41408-...
"Unintentional weight loss ≥ 10% within the previous 6 months; significant fatigue (ECOG performance scale ≥ 2), fevers (38.0 °C) for ≥ 2 weeks without evidence of infection; night sweats for ≥ 1 month without evidence of infection."
You haven't shared anything about what was discovered in your diagnosis, such as whether you have swollen nodes or spleen and what your bone marrow test found, so it's not possible to comment on the accuracy of your 'low grade' diagnosis. If you have a significant CLL tumour burden or reasonably active CLL, that could be causing your fatigue. Unfortunately fatigue being due to our CLL is not often acknowledged by doctors, even many oncologists and haematologists, but you've correctly worked with your GP to rule out other possible causes. Note that it's a common mistake to think that a high lymphocyte count should correlate with fatigue, but CLL cells in our blood are in a dormant state. It's their signalling activity in our nodes (chemokine and cytokine proteins) that can make us feel like we are forever coming down with a severe case of the flu.
Your consultant is unfortunately correct that treatment may not make a difference, but also he shouldn't be shocked if it does! Sadly, there's no way to know whether treatment will or won't help.
While it may seem to be the case that you haven't anything to lose by having early treatment for your CLL, your consultant should explain to you the pros and cons of doing so. You are relatively young to be diagnosed with CLL, so you do need to consider whether early treatment might reduce your chances of living out a normal life expectancy. Thankfully chemoimmunotherapy has been replaced by safer targeted therapies in the UK, but the hope of treating CLL earlier with targeted therapies being advantageous didn't work out in clinical trials. Hence watch and wait is still recommended until you meet one of the treatment indications in the previously referenced table. Delaying treatment, defers the risk of potentially life threatening infections that are more likely during treatment. That's why getting up to date with recommended vaccinations is such a good idea, though I note that you shared your reluctance to do this in your first post.
I would hope that your consultant would have done a few prognostic tests to help with your decision. If you have an indolent form of CLL, then early treatment isn't likely to lessen your chances of achieving a normal life expectancy, but if you have more aggressive markers, in particular 11q del from FISH testing, then there is a risk that you'll be relying on your remissions lasting long enough, so that you don't run out of treatment options as your CLL becomes resistant (refractory) to the different approved treatment options.
You might be interested to know that M D Anderson in the USA do consider CLL related fatigue to be a serious issue and have actually done a JAK inhibitor clinical trial, namely Ruxolitinib for symptom control in patients with chronic lymphocytic leukaemia: a single-group, phase 2 trial
Interpretation: In patients with CLL, ruxolitinib was associated with significant improvements in disease-related symptoms as measured by BFI, (Brief Fatigue Inventory) MDASI, (MD Anderson Symptom Inventory) and symptom interference scores. Further studies to test the therapeutic efficacy of ruxolitinib in CLL are warranted.
Ruxolitinib is unfortunately rather expensive and not, as far as I know, considered for use in the treatment of CLL in the UK.
I have no weight loss, no night sweats either. My spleen and liver are ok too! I have a lot of weakness , I get pain , and just completely lousy all day every day! It’s being going on for a few months now . I am seeing a private cardiologist on Wednesday and saw my own GP today and he has no idea but thinks it is probably the CLL! I guess it’s still a waiting game for more investigation but I’m already tired of it all!
This must be dreadful for you Belinda as I see you’re only 57. I’m sure they’ve already been checked for but presumably hypothyroidism and anaemia have been ruled out? This weakness leading to use of a wheelchair is very unusual at this stage. I’m wondering if you’ve had Covid and could be experiencing longer term symptoms? ME/CFS are other considerations but it does sound like other medical culprits have been ruled out. Did these symptoms start with your CLL diagnosis?
Neil has given you excellent advice relating to treatment as it relates to ‘constitutional symptoms’ but undoubtedly, your situation is more extreme from the norm at this stage.
Hi Newdawn, as I just mentioned to Belinda, I think I had long-covid when I was first diagnosed. I thought the symptoms were CLL. I had very weak legs and could not walk properly, it was very scary.
Thank you for your message!! Hope you are doing well?!
I saw my GP and he said he can’t find anything else he can put it down to! I’m seeing a private cardiologist on Wednesday which he thinks is a good idea ! He did mention the only other condition which he called “a dustbin diagnosis “ ME/CFS but admitted he didn’t want to as it’s like saying we don’t know what’s wrong! He said he thinks it is the CLL though. So il see what the cardiologist says and take it from there!
Belinda “a dustbin diagnosis “ made me laugh. I had an “ exclusion “ diagnosis which I then said you don’t know.
Some of your symptoms sounded similar to me several years ago and mild spinal stenosis was diagnosed and physiotherapy sorted out all those strange pains.
I see in your previous post that you are vegan. Is your GP aware of this? It could give him an idea about the deficiencies of exactly what he should be checking that could be responsible for your current state. That's a long list to be checked.
Thank you for your message. I always make it well known I’m vegan to the doctors incase of a deficiency, but no doctor comments on it. I e recently taken iron tablets and B12 as they were slightly low but that’s all that flagged up!
Hi Dragonfly, You are not going to want to hear this as a vegan, but my partner, who has an extremely rare disease called hypophosphatasia, which has caused her serious problems with fatigue for eight years, has recently discovered eating 100g of beef steak a day has given her way more energy. A lot more. (It makes her a bit irrepressible and I have jokingly suggested she eats less steak so she isn't dancing around the house and doing star-jumps in front of me but I'm really glad for her, obviously, and hope it lasts.)
She has never been vegan or vegetarian, and we've always eaten some red meat each week, but a daily dose of steak has given her hope. She can't work out why but wonders if there is some odd combination of iron and other minerals / vitamins that work for her.
I have hesitated to write this email given you may find it offensive but I have had crippling fatigue since 2105 on account of CLL (despite being successfully treated on various clinical trials) and I would eat anything or do anything to be able to function even half-normally.
My apologies again if this isn't a welcome suggestion.
I’m not offended hehe but I’m vegan for the animals not my health so I wouldn’t even consider eating that, I believe we can get anything “meat” offers in other ways. As you are the one with CLL are you not finding anything to help your terrible fatigue? That must be so frustrating for you if you’ve had treatment? Are you being offered any solutions for it?
Glad not to have offended you! No, I've not found anything to help my fatigue. I can walk about 2km once a day — but that feels like quite a good deal given that in 2015 and 2016 I couldn't walk around to the back of my house! I had to be wheeled along hospital corridors in a wheelchair (which really annoyed my haematologist). I was the only one in a cohort of 50 on that clinical trial to have severe fatigue and he didn't understand why.
It took 2.5 years for my blood to become normal on Zanubrutinib and the fatigue cleared quite rapidly after that (as he predicted).
Those years were so dire anything seems tolerable in comparison. Even now, though, I clear the dishwasher in two stages and can't do any task like sweeping the floor for more than five minutes without being exhausted. Oddly, however, I can walk a few kilometres. I don't understand at all how fatigue affects me but I've come to accept it.
I have great admiration for people who are willing to sacrifice their own health for the sake of animals. I could never do it but you have a rented spot in heaven if you believe in the afterlife. Best wishes going forward!
Vegetarians and even more so vegans need to be more conscious of their diet. Omnivores have an easier time getting essential nutrients from their food.
I understand completely. I've never liked eating meat myself (particularly as a child) and I have forced myself to eat it purely for my health. I'm never far away from gagging when I eat meat.
However, I'm aware that while plants' iron content can be high, they mainly contain non-heme iron, and its absorption is low due to plant-based molecule–iron interactions.
I know you've had a ton of advice on this thread (probably some of it annoying!) but it could be worth checking whether you have an iron deficiency because I believe there are ways around that (under medical supervision) that don't involve eating meat.
Aww no it’s never annoying getting info even if it does go against my own beliefs . As a child I also used to gag on meat, as an adult I avoided it a lot as it just felt wrong in my mouth and I absolutely love vegetables! I even stopped having milk in my tea before I went vegan as I didn’t like the texture of the milk in my mouth either!! That wasn’t the reason I went vegan though, it was simply shown footage of farming practices and learning about the dairy industry it caused me and still does such mental distress to the point of I feel traumatised , I couldn’t ever put anything in my mouth knowing those things. I honestly just feel heartbroken after learning everything so it’s not even something I could consider now. But il happily eat a varied diet and I love all veg salad legumes beans pulses etc I actually eat more now as I enjoy my food so much more! I used to dread being served up certain things as a child and often used a secret tissue to spit it out in! I only went vegan 6 years ago just so as far as possible I don’t contribute to buying anything with any animal products in it.
I have over last couple of months been taking iron tablets B12 and a multivitamin thing lol
Ha! I still can't drink milk (straight) and at boarding school I used to wrap meat in a tissue and put it in my pocket and take it out of the dining hall to put in a bin. Once I didn't notice I had a brown liquid from the gravy running down my leg below my shorts and my fellow pupils came to an unfortunate conclusion about its origins.😄
Yeah I think some of us just can’t tolerate the feeling of it in our mouths, must be a texture thing! I remember getting very stressed at infant school when the crate of bottled milk was delivered!! We were forced to drink these little bottles of milk! It was always worse when it wasn’t freezing cold milk but slightly tepid 🤮 then still in infants school I was forced to eat a cheese flan which the smell alone was making me gag!! And I was sick at the table!! But teachers were always saying ooh it’s yummy and good for you!! Well it wasn’t and I hated school until I left at 15 😂
Oh my, that brought memories back for me too of the milk! I disliked all the cream at the top, I was so pleased to have a straw to hopefully get through to a more palatable drink.
And the hiding the meat, I too wrapped stuff up to get out of eating it. One Christmas dinner at school I pretty much hid everything within the stuffing as that was the only bit you were allowed to leave uneaten.
I’ve hardly ever eaten meat, I just don’t like it and I often wonder if this has been a reason for my continued fatigue and now CLL
Belinda sorry to hear about your debilitating symptoms. I was eventually diagnosed because I was so exhausted I could barely put one foot in front of the other. When I was diagnosed they also thought glandular fever was involved.
My only other suggestion, and if not already tested is your thyroid function. A friend of mine gave up working because of exhaustion pre diagnosis.
Thank you for your reply!! My GP went through all my results today and found nothing else wrong apart from the CLL . I’m seeing a cardiologist Wednesday privately to rule out anything with the heart etc just another avenue to explore! I have had constant low blood pressure so il see if that is anything to do with it! It’s a long frustrating journey!
Hi. I was wondering if anyone would bring low blood pressure up, until you did. I am retired and an avid golfer, but I had to give up golf and most other physical exertion this past summer because of extreme fatigue. I also had relatively low blood pressure (typically 95/56). I had to pursue it and corrective measures with my doctors, and it apparently was due to other medications I was taking (one was urological, and one cardiac). I do not know if the acalabrutinib (Calquence) I am taking also contributed. After cutting back significantly on both, my blood pressure improved and my energy level did as well. So, if your blood pressure is in a similar range to mine, while it might not alarm your GP or cardiologist, it absolutely could be causing the fatigue. (My GP said there really are not good treatments for hypotension, other than increasing your salt intake.)
Has your blood pressure gone back up yet? Did you increase your salt? I’ve recently increased my salt intake to help! It’s had no affect as yet!! My blood pressure can be anything from 70s to 90s over 30s to 50s that’s my normal range which it’s been like this as far s I can remember so unless it’s had some bad affect on me I don’t see why all of a sudden it would make me feel so poorly.
Hi, Belinda. I just started playing golf again, this month. When I was feeling lethargic, my blood pressure had been hovering at the top of the range you gave for your blood pressure. Based on my personal experience, that HAS to be your problem as well, since yours runs even lower than mine was. After I changed/reduced my medications, mine came up to around 110/60- 115/70, and my energy level recovered as well. My drop in blood pressure was due, at least in part, to two medications I was taking. I don't recall if you wrote anything about other medications you are taking, but if you are, you might consider stopping or cutting back on the dosage of them one at a time briefly, to see what happens. Then pursue alternatives with your doctors, which is essentially what I did.
I am really surprised that your GP or cardiologist did not express alarm. My GP told me the rule of thumb is to not get concerned until the systolic pressure drops below 100. Yours is so far below 100 that alarm bells should have been going off in the doctor's mind.
Of note, I have been taking the meds in question since before I was diagnosed with CLL . I have to suspect, given the timing, that either my CLL, the Calquence, or both, made my blood pressure more sensitive to the side effects of the drugs I was taking than it had been.
Good luck. Hope this gives you some additional insight.
Hi Dragonfly766, I too had terrible fatigue for years and that was how they diagnosed my CLL, they were trying to get a clear blood test to refer me for CfS/ME assessment and never got the clear test, that all got forgotten about once CLL was diagnosed, and everything now gets blamed on the CLL by everyone apart from the CLL consultants who say it’s not.
My blood pressure is and always has been very low too, and even though Drs say that’s healthy, it’s no fun feeling lightheaded, fainting ect most of your life. I have started having more salt, I started craving it as the CLL treatment lowers blood pressure even more. It does help a bit.
I also don’t eat meat, I don’t like the texture, never have, but I really found fish helped me feel better so I’ve had to add that back into my diet. Not often as I struggle to eat that too sometimes.
Everybody’s body is different and it’s a real trial and error process to find what helps you. I found kinesiology really helpful in finding out what my body lacked and a great starting point for improving a lot of pain and fatigue.
I also had some fatigue management which helped.
And Some counselling as I was struggling to accept treatment and therefore worrying constantly, adding to fatigue.
I changed my job to a less responsible one with less hours and really took a big look at my life and how I was living.
CLL for all it’s tough times has also given me some life changing lessons for living a more simple yet fulfilling life.
I wish you well and that your answers arrive very soon
So sorry to hear you are feeling so low. This is just a wild-card but is there any chance that you might have long covid? I think that is what happened to me when I was first diagnosed.
To add something else to be considered. The fatigue, pain, feeling low and difficulty showering are also symptoms of Polymyalgia Rheumatica. Where is your pain? PMR usually starts in both shoulders and arms.
It’s often missed in people in their 50s as some GPS are still of the mind that you have to be 70+. Not true.
I saw my GP today and he doesn’t feel there’s anything else wrong me apart from my CLL although I am seeing a private cardiologist on Wednesday! Just another thing to rule out!
My pain started across my chest around the top of my back and my neck /head on my right side.
Hi dragonfly. Your symptoms are very reminiscent of my own. I still suffer extreme fatigue but as well as CLL and fibromyalgia (diagnosed in 2015 aged 59 after poor sickness record) I was diagnosed with PolyMyalgiaRheumatica in 2021 4 months after first showing symptoms (I think the diagnosis is reached by excluding other causes) and 4 stone lighter and put on steroids (prednisolone). The effect was quite dramatic although my muscle wastage now added to my slow recovery. Sorry I’m being so long winded but please get your GP to investigate for PMR as the sooner you are given steroids the better and GCA needs to be excluded.
The other thing is just to say that I still suffer from fatigue having finished treatment for PMR this May and my haematologist always maintained that my fatigue could not be due to CLL because it wasn’t severe enough although I provided her with plenty of evidence that low disease load could still cause fatigue. So she signed me back to my GP and I no longer have a haematologist so I am left to managing and interpreting my own blood tests. When I feel it’s time for treatment I will ask for referral to a different hospital haematology specialist. If there’s still an NHS.
Good luck and keep battling the system and please mention PMR to your GP
Thank you for your reply!! Sorry to hear you e had such a hard time with everyone!! I did see my GP and he didn’t mention anything like that! He actually thinks it could be my CLL!! I am seeing a cardiologist privately now on Wednesday and see if my heart is ok and not causing it as I always have low blood pressure. It’s just another thing to rule out it seems!! My GP thought it was a good idea to go private as he doesn’t rate our NHS anymore!! I don’t think I could interpret my blood results! But I guess this all ahead of me now I have CLL, hope you are doing ok considering all that you are dealing with!!
Hi Belinda, I may be oversimplifying for you but I do want to share my own experience. I was diagnosed with CLL 2 years ago and I became depressed, very weak and lost 10 kg in less than 3 months even though my WBC count was less than 20K. It was my mental situation which was causing all this. Finally after talking to many and also taking information from this website, I convinced myself that I won’t die from CLL but rather with CLL and live a full life. I became positive if life and regained my lost weight, became more energetic than pre-CLL by changing diet and walking 10,000 steps everyday.
I am not sure if it helps you but please stay positive and convince yourself that you will have a normal life. Mental situation plays a big part. I do believe there could also be reasons unrelated to CLL for situation you are in. My best wishes for you.
Thank you Lovely67 for your reply! Sorry to hear you went through such a dark time! Good to hear that you are doing well now !! I don’t believe I’m depressed , I spoke to my GP in depth today and we even discussed that too. I’m seeing a cardiologist Wednesday now under private health care not the NHS which my own GP thought was a good idea as he doesn’t rate our system much anymore! He thinks it probably is my CLL causing my symptoms though which was interesting!
Although IWCLL sets the standard for staging and measuring CLL progression, we are indeed individuals with individual symptoms. In my case I had relatively low WBC numbers, however, my fatigue was debilitating. In addition, I started getting UTI's, skin rashes, arthralgia, connective tissue and abdominal pain. My night sweats were so bad that I slept with a towel, and got up at night to wash.
My first oncologist told me the symptoms were unrelated. The specialist that I finally chose, could not confirm the symptoms as CLL based, however, he did not dismiss the symptoms. Given that I had enough lymph node involvement and WBC doubling to qualify for the O+V trial, I was allowed treatment.
Amazingly enough, all of my symptoms disappeared after the third obinutuzumab infusion. This does not mean that I am advocating treatment to anyone. The decision to treat should always be the individual's choice based on their doctor(s) influence.
Thank you for your reply!! It’s really helpful hearing everyone’s situation and story! We all vary so much!! I’m so glad your treatment worked for you and your symptoms went away!! Hopefully il get some answers and relief soon as I’m pretty fed up feeling like this!
Hi Dragonfly766, the above replies to your post are all excellent. I will just share my experience. When I was diagnosed 8 years ago, my disease was not advanced at all. My lymphocytes were barely elevated and no enlarged nodes or spleen. At the same time I was having fatigue, not all day long but by 6:00 PM or so I was completely exhausted and had to go to bed at 7:00 or 8:00, which for me was very unusual. This did not seem to be related to any other infection or illness. This lasted for about a month and it subsided suddenly. I don’t know what caused it and attributed it to my CLL. I am still in watch and wait 8 years later, still untreated. My CLL is much more advanced now than it was then, but I have not had the same level of fatigue since.
I hope you either get some relief or some answers, or both!
It is the responsible thing to do to rule out other causes of fatigue before instituting treatment. Last time I saw my oncology provider he told me about a CLL patient they had recently treated due to his fatigue but it was not improved. The provider actually said, "It was kind of a waste. It turned out he had something else going on." It's awful when we feel horrible and the doctors can't figure out what's going on. I hope you get some answers soon.
Hi there, I'm sorry to hear about your extreme fatigue and weakness. I too have those two problems and I was diagnosed with SLL in 2015. Since then I have also been diagnosed with an autoimmune disease, which has caused the vasculitis and neuropathy. I am just wondering if your physician has done an extensive blood panel to see if you have any autoimmune issues in addition to CLL.
Sorry to hear you’ve had such a rough time! Can I ask was it a blood test that found the autoimmune issue? I’ve had loads of blood tests so I just gathered all areas were covered .
It was actually a nerve biopsy in my calf that finally diagnosed the autoimmune disease along with the vasculitis which has caused my neuropathy.
Hi Belinda,
I am in rai stage 0 Watch & Wait, idiagnosed one year ago. I'm 56. I began feeling intermittent fatigue 2 years ago. The fatigue comes and goes in waves. I have to get 9 hours of sleep and eat well and pace myself. Other than elevated WBC (18,000) and ALC (13,000), my blood work all looks great.
I had severe fatigue along with some other symptoms that led to my diagnosis. I too could barely function early into the diagnosis. Please excuse me if I express doubt that your consultant is really a "CLL Specialist" because of their doubt regarding your symptoms. They may be a hematologist-oncologist of long standing, but with CLL being a rare cancer, not many are truly CLL Specialists.
Doctors are notorious for dismissing symptoms that women report, and this may also factor into their dismissal of what you report. You need to be firm and not let them dismiss you. Let them doubt, if symptoms improve after treatment hopefully they will learn something. Just because many people do not experience debilitating symptoms, does not mean that applies to everyone.
Thank you for your message!! It’s very interesting what you say!! My CLL “specialist “ wasn’t an easy man to understand! He waffled a lot and gave weird scenarios lol he did agree to see me again in 2 months after my GP explores other avenues. He did say he would treat me but doesn’t believe it will make any difference. I’m actually seeing a private cardiologist today and going to arrange a private oncologist too for a second opinion. It’s very frustrating and expensive but being told it isn’t my CLL making me feel like this was a massive shock! As I don’t seem to have anything else wrong ! So I know where you are coming from!
Has fibromyalgia ever been mentioned. I have two friends who suffer with it. The main symptoms are pain and fatigue. I know there aren't any test that can diagnose fibromyalgia but you may want to read up on it. Is your pain body aches almost like having the flu? That's how my friend describes it. She said it hurts if someone just touches her sometimes. Sometimes she sleeps most of the day.
I have fibromyalgia also, and the CLL diagnosis really triggered it. Look up the specific "pressure points" that many of us have. Not everyone does, but to discover "tender points" when there's no bruise or other reason for a spot on your skin to be painful when pressed, may help.
Hello Dragonfly, its always preached here how different we all are from one another. Our symptoms differ, side effect reactions, everything differs, so CLL diagnosis & feeling horrible sounds like 1 + 1 = 2 🤔
Anywho, how do we optimize your health & energy! Eat clean unprocessed whole foods. Plant Based Organic Foods; Fruits, Green Leafy Veg, Starchy Vegetables, Nuts, Seeds & plenty water. Its crazy but daily exercise helps the body, even just walk, that works. Try to minimize your stress, as best you can. 1 gal of water per day & 8hrs of sleep will help in this Self Care Journey❤️
I do try hard to eat as healthy as I can , obviously being human I do slip at times 😉 I could make more effort I guess! I am going to start putting some gentle exercise into my daily life again too!! I’ve kinda started adapting to my “new” way of life at mo but I don’t want this to be a permanent way! I’m actually seeing a private oncologist in London on Monday and see if he says anything different from my NHS specialist, just another opinion.
hi Dragonfly. I was in a similar scenario to you. I developed serious fatigue over a few years, thought to be due to a bout of pancreatitis, and possible malabsorption.
I ended up not being able to work after dental work and ongoing infections. I also didn’t want to be diagnosed with chronic fatigue, so I struggled for over four years.
Eight months later I was diagnosed with CLL and chronic fatigue in same week, having coincidentally waited 4 months for a private appointment with a top chronic fatigue dr.
So many people here have described how their consultants are the only ones to deny that the fatigue is related to the CLL.
I am however optimistic about the fatigue. I have just finished venetoclax and obinutuzumab and my new consultant has said he is hoping I will see more improvement in the next 6months to a year.
As everyone has said, we are all different. When I saw the chronic fatigue dr he thought that due to my poor immune system, the terrible infections I had had before diagnosis, had triggered the chronic fatigue.
I think Neil’s explanation is spot on. No one understands fatigue completely yet. There is an overlap between illnesses associated with severe fatigue such as lupus, fybromyagia, CFS , long Covid etc. I was so excited when I read the paper about Jak inhibitors and a small cohort of Cll patients, because a while before that I had seen a tiny trial for CFS. JAK inhibitors have also been shown to improve quality of life in people with severe eczema, which again is associated with chronic inflammation and disruption of cytokines.
The research driven by long Covid is changing the recognition of fatigue. And the revolutionary treatments being developed in CLL are nothing short of miraculous.
I feel for you. I had a medical career which disappeared overnight just before Covid . However I look back now and can’t believe my luck! If I had still been working I would have been wiped out by Covid, not knowing that I had the vulnerability.
Because my first consultant missed the progression of my CLL my treatment was delayed, and I got to have a treatment that was only approved in December 2020. I also got my treatment t over the last year, when Covid was much less a threat. So lucky!
My spleen grew very big, and was not noticed, and I now think I had a massive turnover of cells, which kept my lymphocytes lower than expected.
I have been so much better since taking a natures aid multivitamin without iron, a vitamin d tablets, and a b12 tablet. I know when I miss them as my hair falling out is an early indicator. It completely reverses when I start them again.
Normal iron gives me stomach ache, so I just take iron rich water - spatone, when my ferritin is low.
I had undiagnosed coeliac disease for years, which might also have precipitated inflammation. It didn’t show up on normal tests because my immune system was not known to work properly, so I was investigated for years for diarrhoea etc.
that’s why I’m a bit fussy about the vitamins I take as quite a lot have gluten contaminants. (I can tell within half an hour lol!).
But that is just me. Coeliac patients don’t absorb vitamins as easily, like vegans, and as a result of our CLL we can get low on B12 due to turnover of cells, and low in vitamin d because of avoiding the sun and wearing sunscreen.
My policy has been to try things and see if they can help. The things that have been successful for me are as above. Plus a non sedating antihistamine, and a healthy diet with around 30 different vegetables, fruits, herbs spices etc per week.
Writing this reminds me I have fallen off the wagon recently so that will be my New Year’s resolution!
We are all different. Some things work for me, somethings don’t. I found my fatigue actually improved with my diagnosis as I knew what it was. Keep being optimistic about the future. New things are on the horizon. I found macmillan counselling very useful as I longed for my old life, and they taught me to enjoy the present, despite my fatigue. I didn’t think it would work, but it did.
Ps the two diagnoses of cfs and cll have done me no harm. Although I know CLL causes most of mine, if you come across a non believer in CLL fatigue you have a diagnosis. I’m a bit stubborn. Although I use a wheelie to help me I haven’t applied for a disability badge or attendance allowance etc. but I encourage everyone else with fatigue to do so.
My quality of life has really improved and this site is a constant source of support . 🤗
Sorry to be late to your posting but just came across it. I too am very fatigued from low blood pressure. The cardiologist said to drink more water and have more salt, neither of which provided much help. The problem with taking just salt is that there needs to be an associated input of glucose to allow the salt to work. The World Health Organization (WHO) developed a hydration formula which was originally developed for folks who became hydrated from diarrhea. Then they further indicated that it could be used for people with low blood pressure (which is what I have when standing up or trying to do anything mildly strenuous). That has helped me to at least function more normally. If you go on Amazon and search for "hydrating salts", there will be several options. The formula is prepackaged to mix with one liter of water and costs about $0.40 per package. I use 1 to 1.5 packages per day. Hopes this helps. Also, there a several medications that are supposed to help with low blood pressure which I will be trying hopefully within a week. Good luck.
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Should I have a baseline CT scan after a CLL diagnosis? 
