Chronic fatigue. Any clues? All help appreciated.

[Loubprv]

Hi Everyone,

I had an email this morning from a lady whom I buddy. I’ve tried to attach it in a photo. I don’t have too much trouble with fatigue unless I overdo it, but any help re this issue I know would be appreciated.

Hmmmm. Photo not working so here is the email I received,

“ well here it again, the same exhaustion. I was out all day, going all day, but not a very physical day. Here I am, suddenly I can’t think straight, I’m so exhausted. I’m too tired to write and it’s only 8.45. I push myself all the time but don’t think there’s a fix for it. I’m just venting. ( I don’t know what she means by that)

I have suggested that she might be overdoing it by pushing herself, but not sure that bit has registered- I know it’s jolly hard to give up a lifestyle following diagnosis.

Have also suggested she seeks a second opinion from an mpn specialist. This lady is in the US and is in her sixties.

All suggestions and opinions welcome.

Thanks,

Louise

x

[clubdino]

Unfortunately this is something that most of us deal with and there doesn't seem to be much of a solution. I'm 42 and have been battling this fatigue problem for a long time. I have days where I wake up and think I'm going to have a good day and 2 hours later I'm climbing back into bed because the exhaustion will come out of the blue. I reduced my work hours to 30 hours a week and that has helped.

Some people will recommend exercise. She may want to take it easy on some days and give her body a rest even when she doesn't feel like it. I've tried the ADHD medication Adderall as it is an amphetamine but when that drug wears off in the afternoon it can be pretty brutal. A visit to a MPN specialist isn't a bad idea. Venting just means she is just getting her feelings out. Poor thing, I understand the struggle and hope she finds an answer.

[Loubprv Volunteer in reply to clubdino]

Hi Thanks so much. I really feel so sorry for her.

x

[Applesnpears]

Which MPN does you buddy have? If its PV then ruxolitinib might make a big difference.

[Loubprv Volunteer in reply to Applesnpears]

Oooo that’s an idea. I’ll suggest it. Thanks. She has PV.

[Applesnpears in reply to Loubprv]

Ruxolitinib is not suitable for everyone but it is certainly worth asking the question.

[Inca in reply to Loubprv]

I have Rux now as Hydrea gave up on controlling my P V. It has not been straight forward ,but 15 months on I think it gives me more energy,but I still get the ghastly fatigue,maybe I try to do too much and there are a few side effects ,normal I understand.Hope something works for your buddy ,the fatigue is ghastly.Best to you Louise,Sally

[Loubprv Volunteer in reply to Inca]

Thanks Sally. X

[Cja1956]

I think you gave her good advice. Fatigue is one of the most common symptoms of MPNs and we all deal with it the best we can.

[Loubprv Volunteer]

Thanks x

[Ovingite]

I would suggest talking to her GP. It is tempting to blame everything your MPN but fatigue can be caused by numerous things. In my case I had a vitamin D deficit which was easy to remedy and made a huge difference, and I know other vitamin and mineral deficiencies can also promote fatigue. It's worth getting tested.

Good luck, and well done for looking after your buddy.

[Loubprv Volunteer in reply to Ovingite]

Thanksso much. I too suggested getting a thyroid test, but I think in this case it’s more than that and is PV related.However, will suggest again.

[ourlife]

Fatigue has always been a problem for me, exercise helps me but sometimes it’s like borrowing energy I feel great for a while then at some point later on just have to rest.

Lowering my expectations of what I want to achieve in a day and pacing my self, ie 1 to 2 hrs doing chores or an activity then rest for 20-30 mins with a drink really works well for me.

Sometimes when I wake up it feels like I’ve not been to bed at all and is hard to get going, I have PV on a Rux & HU cocktail.

Good luck and have fun

Ourlife

[Loubprv Volunteer in reply to ourlife]

Hi Thanks so much. Yup, I can empathise with that! I tend to get up between 9 and 9.30, have a cuppa and read emails, do some chores, shopping whatever, then like you sit for however long I feel like it ( sometimes over an hour!) then bob up again. I feel this lady is doing too much and pushing herself. She has a 2 year old granddaughter whom she looks after regularly.

I have twin one year old grandsons. Eeek. When I go to visit I collapse in a heap when I come home. Love them dearly but I’m glad it’s only once a month ( they live 4 hours away)

x

[Chaz1]

Unfortunately there is no magic wand and fatigue doesn't affect everyone, nor in the same way. My hubby is the mpner he has seen a sleep specialist & mapped out what he does each day to see where his energy is going. They said doing things for a few hours at a time is too much & he should pace himself more. So he doesn't work now mainly due to work not supporting him but its been beneficial a bit on his fatigue to not work. He does the house work but it takes a few days, he does downstairs & upstairs on separate days. He still gets up in the morning when I do but he usually has a laydown mid afternoon & sleeps for an hour. He can nod off mid morning if he's done some house work. I know if he's particularly exhausted as the housework is bare minimum & so I secretly do the rest while he's elsewhere in the house. He finds having a conversation can be exhausting, he has low O2 saturation so I think this is the cause, he gets exhausted being in company for more than an hour. I'd like him to have oxygen on hand but he's not ready for that at 48 yrs old. If we go out I always drive back, sometimes drive there too. He's usually home in the evening snoozing by 6.30pm regardless if he's had a quiet day so when we go further a field I book a travelodge or something. Its all about pacing & knowing that no day is the same, energy levels change each day, the same as I know he's exhausted by how the house looks I also know if its been a good day if the house looks shiny as a pin when I walk in. He has learnt that it doesn't have to all be done prestine. If we are heading out the next day he does very little the day before so he's at max energy. The spoon theory is really good for explaining fatigue and how you have to pace. There is no quick fix, we've found caffeine is a no no, it actually makes him more exhausted, staying hydrated, gentle exercise helps, healthy diet but not too much red meat or leafy greens. Interestingly hubby had an operation last year, I was prepared for him to come out of theatre looking awful but actually it was the best he'd looked for years, he was alert, skin colour was great, he looked and acted like the man I married. It has to have been the IV and oxygen - if I could give him the same each week it would be great. Some days everyone over does it, but accepting they have overdone it & taking a quiet day to recover is key, sometimes it can take a few days to feel anywhere near normal. Its important for them to realise sometimes they have to factor a break into the day. The brain fog is awful, & is more obvious when fatigued and can be hard for both those with it and those around them. In the UK there are fatigue management courses might be worth her looking for a course near her, cancer centres offer them but her dr might be able to point her in the right direction. Helps to have others about that going through the same.

[Loubprv Volunteer in reply to Chaz1]

Hi thanks so much. Will send a screen shot of all the replies. I’ve found an mpn specialist in New York and strongly suggested seeing him as a second opinion. She seems very loathe to change her ways and accept advice, but unfortunately with an mpn that’s just what you have to do, as well as being your own project manager and learning what suits you.

I suggested she give up alcohol and caffeine but she refuses to give up caffeine. If she reads your email she may well be persuaded! I drink naturally caffeine free Rooibos earl grey. Thought it was foul to begin with but now actually prefer it. I never touch alcohol either.....and don’t miss it!

I too retired ten years ago on diagnosis and am lucky enough like your husband, to have a brilliantly understanding spouse. Some days I go like a train and the place is sparkling, others a bit of a bomb site but to be honest, I really don’t care 😂 Louise x

[Chaz1 in reply to Loubprv]

I think accepting your limitations is probably the hard part but it makes for a much better quality of life in the long run for everyone. I find it frustrating at times, particularly his lack of memory & so repeating conversations but it's not his fault so not worth worrying about, we adapt. Hope it helps the lady to know she's not alone & that there is ways to be a bit proactive x

[Hidden in reply to Chaz1]

I thought your description of your husband's struggle and coping strategies would resonate with many of us - it certainly did with me and sounded like my daily methods of living with an mpn. The acceptance of a quiet day after a day of overdoing it is essential. Also your compassionate way of helping him was very moving.

I would also recommend the spoon theory - my daughter, a physio, introduced me to it - she often tells patients with chronic illnesses about it

and we use it as a shorthand in the family to encourage me to 'eke out my spoons' each day. Also as you said it' s helpful to explain to friends etc especially when they say, kindly meant, how well one looks. The phrase I saw on MPN Voice ' socially silent but cellularly active' is also helpful.

I've got myself down to one cup of coffee a day and also drink decaffeinated Earl Grey the rest of the time. Alcohol unfortunately just makes me feel rotten - what a shame!

[Chaz1 in reply to Hidden]

I've given up explaining to others, my family are amazing but hubbys family are just clueless & I don't think they want to understand. Fatigue & brain fog to many seems a small issue & thankfully they don't know how it feels but its a massive impact unless you try & manage it. I'm just pleased to have him here, even if it's as my sleeping beauty, life could be so much worse.

[Loubprv Volunteer in reply to Chaz1]

Hi totally agree.....my husband is my rock and my safe harbour x

[Anag]

If one is starting off the day with exhaustion the body is usually overburdened by toxins, medications, intolerances, psychological stress, an illness....

It is important to get rid of those stressors.

It is also important to reduce inflammation in the body with (a GOOD source) of omega3 as fish oil or true organic olive oil. She should check those possibilities.

CoQ10 in ubiquinon form is a life saver for energy. It helps our mitochondria directly.

She might have a thyroid problem. In that case, get vit D levels up to 60-80, get enough selenium and iodine.

Detox the body from metals, chemicals, all food additives, parasites, mold, yeast...

I’ve done all this and actually tripled my energy within 1.5 years. I will be 55 in April.

Cheers. Anag

[Loubprv Volunteer]

Hi Anag,

Thanks.

Could I ask which mpn you have?

[EleanorPV]

I did a fatigue diary. This highlighted the activities which drained me and which gave me positive energy. Also highlights how much sleep I need. We all need to listen to our own bodies and find out if we can improve anything. Sometimes we also just need someone else to say, it is a known symptom which many suffer from.

[Loubprv Volunteer]

Thanks Eleanor. You te right of course. However I always think don’t give up til you be tried everything - like you. So many good tips here. Pilates absolutely wears me out so I don t do it anymore x

[katiewalsh]

Hi. It’s often helpful for me to take a nap in the afternoon. And plan just one activity a day. I’ve learned if I’m tired but push myself to keep going I’m completely exhausted for 1-2 days & unable to do anything. I’m going to be starting Vitamin B12 supplements to see if that helps. She might want to have her B12 levels tested but she may just have to change her lifestyle. She absolutely should have a consultation with an MPN expert & Memorial Sloan Kettering in NYCity has some. You can tell her that seeing a specialist every 6 to 12 months (depending on how stable she is) will allow her hematologist to see her in between & coordinate her care with the specialist. Good for you for being a buddy. Good luck. Katie

[Loubprv Volunteer in reply to katiewalsh]

Thanks Katie. Jolly sensible will pass on x

[Stella57]

"Venting" as in venting ones spleen. Means letting rip with complaints on a topic. Quite an appropriate phrase considering the circumstances !!!