Extreme fatigue and low blood pressure - CLL Support

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Extreme fatigue and low blood pressure

Notmuchenergy profile image
17 Replies

Hi just wondering if anyone who experiences hitting the wall or for no particular reason feels empty of energy has tried taking their own blood pressure ?

I have recently found that when I feel totally out of energy my blood pressure is around 117/74. I understand that this is still within normal ranges but it definitely makes me feel exhausted and unwell. If I can lift it with sipping Cola with sugar or sometimes fresh orange juice I soon feel a lot better.

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Notmuchenergy profile image
Notmuchenergy
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17 Replies
SofiaDeo profile image
SofiaDeo

Sugar doesn't affect blood pressure except to raise it. You may be feeling the mild euphoric/stimulant effect of sugar. That dopamine hit induced by sugar makes you feel better.

psychologytoday.com/us/blog...

You can also get a dopamine hit by mild exercise, which is why so many of us feel better after a walk.

livestrong.com/article/2517...

Notmuchenergy profile image
Notmuchenergy in reply to SofiaDeo

I take the sugary drink to raise my blood pressure. Like I was advised in hospital when my blood pressure plummeted

SofiaDeo profile image
SofiaDeo in reply to Notmuchenergy

I also have low-ish blood pressure. I eat small amounts regularly, to stabilize my blood sugar, instead of ingesting something sugary. Carbonated sugary drinks do not contribute to a healthy diet, and juices are overrated. Why not eat half an actual orange, and get beneficial fiber? Please remember that "dietary guidelines" were not done rigorously (at least in the US).

bmj.com/content/351/bmj.h4962

When was the last time your Vit D levels were checked? When mine got raised above "normal" I feel so much better. Especially compared to when they were below normal.

And FWIW, even though without a thyroid supplement my levels were "just in to normal" I bump it up to "high end of normal" and that makes a difference, in me.

Floxxy profile image
Floxxy

I feel exactly the same at the moment. I'm on V and R. My oncologist is going to check my thyroid levels.

kablea profile image
kablea

I don't like that feeling either. Are you eating enough in general? I eat toast with peanut butter and jam twice a day plus muesli and porridge. If my stomach is empty I can feel jaded. I have not put on weight and am aware that at my age (77) we often do not absorb all the calories from our food.

CaptRon1976 profile image
CaptRon1976

You might want to ask to have a thyroid profile done, TSH, T4 (thyroxin) and free T4.

It is an often neglected simple blood test that if low could explain low energy and low BP.

Hypothyroidism, common as we grow older, is referred to as the “great masquerader” as it can cause a great variety of physical symptoms since thyroid hormone is involved in regulation of nearly all organ systems.

Ron

Notmuchenergy profile image
Notmuchenergy in reply to CaptRon1976

Thank you. I do have my thyroid checked fairly regularly

CaptRon1976 profile image
CaptRon1976 in reply to Notmuchenergy

OK so not that easy.

Big_Dee profile image
Big_Dee

Hello Notmuchenergy

I feel much the same way, except my blood pressure is increasing since I finished V&O. I tried a cup of coffee instead of my decaf green tea in the morning and feel it is helping me. Blessings.

Bobby9toes profile image
Bobby9toes

My blood pressure has always been in the range that yours is, but recently it has dropped to the high 80’s low 90’s over the 60’s. This is taking it at home for the last week and has been consistent. My last DR appointment it was 104 over 64 which is why I started taking it. It’s always higher at the doctors office (white coat syndrome). My doctor didn’t seem worried. I’m not tired, but I get light headed sometimes. He said that is because of the upper number. I recently started drinking cherry juice before bedtime because it helps me sleep and helps the body eliminate uric acid. I looked on line and it told me it also lowers blood pressure, so I’m going to stop and see if my bp changes.

Zigster49 profile image
Zigster49

Sorry to hear what you’re going through. I’ve been there, too.

My fatigue was one of the factors in starting treatment again after a period remission.

I was have always had low bp. I take Midrodrine daily just to keep it up to 90s/60s. BP doesn’t seem to be a factor for me. When I started my second round of treatment, I had plenty of energy while on Acalabrutinib alone (June though Sept.) When Ventoclax was added, my energy was fine during ramp-up but plummeted once I was on 400/day.

My thyroid level was tested and is fine (I have been on thyroid med for years).

I was diagnosed with C.Diff in July. I had two rounds of the antibiotic Vancomycin, during which I felt okay. They didn’t clear up the C.Diff. When I had to start a more powerful antibiotic (Dificil), my dose of Ventoclax was reduced to 300 mg. It wasn’t until I was totally off Deficil, that my energy has returned.

I am still on Acalabrutinib and 300 mg of Ventoclax. I also take electrolytes daily (for bp) and eat peanut butter with yoghurt when I get hungry, which is often. My energy level isn’t what it used to be, but I can enjoy life again!

Besides getting your thyroid checked as suggested by others, I would also check to see if there is anything else going on in your body that could be sapping your energy. Amidst my other problems I had inflamed gums. My dentist, who used to work at a cancer center, said that could be stressing my body, too.

Best wishes for getting some energy back.

LeoPa profile image
LeoPa

My blood pressure is around that level and even lower sometimes normally. I don't notice fatigue. But I do grease my groove six times a day (an exercise pattern) doing squats, push-ups and Pull-Ups. This keeps the blood flowing and the metabolic rate churning all day long. This is on top of all the other physical activities. I think if I was a couch potato my BP would be even lower. Exercise normally elevates blood pressure somewhat.

TartanAlum profile image
TartanAlum

I am on Acalabrutinib. As I understand it, my BP should've gone up, but it went down as well. I found that some other meds I was taking were driving it further down, to the range you mentioned. I got my doctors to switch my medications, and I am now in the 110/60 range, occasionally dipping below 100/60. I was perennially fatigued before; now I just run out of gas. If you are on other meds, you may want to investigate the cumulative effect of them.

Abernathy profile image
Abernathy

Hi I suffer from severe fatigue and have for a long time now and Dr is happy it is linked to my CLL, as they ruled out all the above tests.My BP is normally quite constant, however never taken it when fatigued. I will keep the machine out and test it next time the rug is pulled from under my. Thanks, I had not thought about BP.

I hope you get to the bottom of it.

Notmuchenergy profile image
Notmuchenergy in reply to Abernathy

it would be interesting to see your bp when your very fatigued.

I feel a lot better quite quickly when I can get my bp to go up again. I just wondered if anyone else had noticed this effect.

Notmuchenergy profile image
Notmuchenergy

I feel a lot better very quickly after my bp goes up again.

Really just wondering have anyone else noticed this link with lower bp and feeling extremely fatigued

Abernathy profile image
Abernathy in reply to Notmuchenergy

Will update you here ;)

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