fatigue

[Peterpan2]

Despite a healthy life style (healthy diet , regular exercise and 8-9 hours sleep) fatigue comes on fast and strong most afternoons. Eyes become heavy and clear speech becomes an effort.. working from homes enables a half hour nap, I’m then able to carry on, but at a slower pace. Thyroid was diagnosed as low, but regular medication of 100g doesn’t appear to help this particular complaint. Looking for all tips on possible cures. Thanks

[hunter5582]

Fatigue is the most common MPN constitutional symptom. this would be complicated by thyroid issues. Some find that the cytoreductive medications help with fatigue but others find that fatigue is a side effect of these medications. This would be something to discuss with your MPN care team.

There are some things people find help with fatigue. here are some links.

mpnvoice.org.uk/living-with...

powerfulpatients.org/2023/1...

patientpower.info/myeloprol...

[gdpone]

Honestly sounds more like just being tired and not so much fatigue by your description but could be. When you get sleepy like that and have issues, if you needed to get up and start doing something, would you physically be able to do it?

But fortunately for me I don’t have much first hand experience with this yet. So it’s really hard for me to say for sure.

I can say it would be really hard to give any general advice for health without knowing more about you like age, exact diet, and how often and type of exercise. Not to mention all of the other of your blood markers and history.

[Spanelmad]

No what you mean it's like you've no choice but to sleep!For me it's at least an hour most days.I think it's the meds as since this latest pause with peg it's improved to a couple of times a week

[EPguy in reply to Spanelmad]

What caused you to pause the Peg? Do you have RA?

[Spanelmad in reply to EPguy]

You are correct! I've zero neg.I've developed some neuropathy in hands and feet( 6 doses of Peg at 45 mg)However, it all could be related to my degenerative spine and a arthritis flare .Hands are back to normal feet all over the place(literally balance haywire).Referral to Neuro in place, venuos dopla done( results pending).

Went to Guys yesterday, 1st appointment to discuss the marsked PV. Had my first examination(spleen enlarged) ,discussed symptoms agreed to redo all bloods including all genetics plus ulta sound and BMB.Tests in next couple of weeks, with results in next 8 weeks.

[EPguy in reply to Spanelmad]

If you read my posts you'll find why I asked. Esp my post "Last Dose". I normally reply to this issue in boldface type, but this is not quite there with the info so far.

The concern in my opinion is from my experience you can follow here. If you're having new or increased neuro and possibly related auto-immune (A-I) conditions that correspond to IFN (Peg) this is a plausible warning of a worst case outcome as I suffered. This is in the Black Box warning for IFN, esp for pts with pre-existing A-I conditions. The extra fatigue on IFN could be a minor message (that was the only one I got) but new neuropathies are particularly worrisome.

A good sign is your hands have recovered, so if the IFN is the cause that part has reversed. Balance is one office test neurologists routinely do when neuropathies are suspected so that new symptom is a concern. IFN in particular can in rare cases lead to Sjogrens disease, (Sjo) neuropathies can be one early sign. This is an evil companion I got that you absolutely don't want to catch. I am not the only member who ended IFN this way.

--

You should ask your Rheum about further A-I testing, and be sure your Rheum is familiar with Sjo. Many Rheums have minimal knowledge about it. I posted a long list of blood tests I got.

And most important, discuss in full detail all these neuro and/or A-I events with Guys and your Rheum including any fresh A-I and neuro tests. My opinion is you should do all these Dr discussions before resuming any IFN.

[Spanelmad in reply to EPguy]

I was aware of your situation so stopped when symptoms arrived.However Heam at Guys yesterday said would never have used Peg due to my historydue to the risk with Auto .As for Rheaum team earliest opportunity to see them is October.I've got the blood test listed on your earlier posts and will chase the Rheaumatology team for a work up.

[Spanelmad in reply to Spanelmad]

Guys are coordinating with the local hospital, but I've requested the genetics ,bmb and ultra sound be done at Guys.Neuro won't be local either not sure where but I agree nothing will be started until all results in.Already allergic reaction to HU and this potentially with Peg ,the next problem could be the big one!!

[EPguy in reply to Spanelmad]

That's why I keep making the alarming posts, hoping to save others risks of my fate. I think there are several here. Glad you seem to have avoided any "last dose".

Guys clearly is up to date. In my case there were no prior A-I's other than occasional minor psoriasis. Maybe psoriasis is a risk factor. A bad vax reaction clearly is.

If HU and IFN are out, has Guys brought up Rux? It's generally free of the scariest sides, although it has its own.

[Spanelmad in reply to EPguy]

Yes, but only if it's proved to be PV

[champ30]

I'm the same....reading or doing word search or like and I'm gone into a deep sleep. I have MF on hydroxicarbimide.Lynn.

[BallroomMom in reply to champ30]

Same. And I was an insomniac so this is strange territory. I never was like this before I started on the droxy. Its been 7 months of fatigue, falling asleep in my studio (glue and paint dropped on my project…), brain fog, vertigo.

Its hard to lose my athletic identity . I went from amazing for my age to old lady overnight. Trying to find a new balance of rest and exercise and dropping the need to keep breaking my personal bests, daily fitness journals, the joy of movement and achievement.

[Mwalimu]

I was diagnosed with ET in Oct 2011 and have been treated with HU and asprin throughout. I have suffered with fatigue throughout too and at 82, am grateful I am retired). I try to avoid Ultra-processed food and broadly keep to the Mediterranean diet but for the last year I have been greatly helped by food supplements prescribed by a kinesiologist. I am less tired than I was, sometimes avoid the afternoon nap (used to be 2 hours) and generally last the day better. I also think my general mood is better although those around me have yet to confirm it! I notice Hunter always recommends consulting an Integrated Medicine practitioner so these are two things you could try. Sallie

[Crossefield]

I can relate. Fatigue and brain fog are my biggest gripes. They do come and go for weeks at a time. Currently I'm in sleepy phase and cannot go an afternoon without a nap. If I battle through then I fall asleep watching tv in the evening. It's like a wave that crashes over me. Or an imaginary hypnotist appears and says "and sleep" Even on pegasys with normal blood counts it still happens which is frustrating.

[Spanelmad in reply to Crossefield]

That's a very accurate discription

[ainslie]

allegedly 92% of MPN patients have fatigue, the million dollar question is of course is is how much of our fatigue is from MPN, as we know fatigue can be caused by many other things also. If your thyroid is not optimal I would definitely pursue that because low thyroid will make most people fatigued and cause other symptoms and poss health issues.

[gdpone in reply to ainslie]

I am hesitant to also mention this because it can be a sensitive topic for some but also age will play a huge factor into this as well. From what I have noticed people who are older and much older tend to have fatigue anyway as a result of age. With or without MPN.

[ainslie in reply to gdpone]

yes to an extent but if your fatigue is more than the typical person of your age then its more than age, MPN and if low Thyroid can be major contributors

[gdpone in reply to ainslie]

Yeah definitely true

[Spanelmad in reply to gdpone]

Depends what you think is old!!

[gdpone in reply to Spanelmad]

Yeah true lol. Depends on the person too. But I would say for most probably 70+

[Mostew]

have you had vit d , iron and magnesium checked …? Could be a contributing factor..

Do you have t3 and t4 checked as well As TSH.?

Hard to tell what causes what .

.

also maybe you expect to much of yourself?

It’s hard to accept our limitations isn’t it..

do hope you can find something to help

[ETinNYC]

May seem counterintuitive but exercise is a huge help. Even a long walk makes a difference.

[EPguy in reply to ETinNYC]

to ETinNYC

I found the same, when fatigue onset, moving around sometimes aggressively was helpful. I think this is not unusual for many MPNs. But it doesn't work anymore for me since I got Sjogrens.

[LIGEBA]

I also had very bad fatigue that would come over me out of the blue and very suddenly where I had to stop whatever I was doing and sit down. Oddly enough I was not tired where I could fall asleep, just deeply fatigued.

I have found forcing myself to move (taking a walk, going on the treadmill, doing some housework) really helps to get past it. It was a huge struggle in the beginning to move when all I wanted to do was sit down, but it's really been working. The other major factor was increasing my Vitamin D. I have found supplements really don't work for me so in spite of my skin cancers, I do try to get at least 10 - 15 minutes of sun each day. Winter is a challenge so I try to take at least one trip to a warmer climate (and hope it doesn't rain that week).

Between the Vitamin D and more physical activity (especially during the times when I least feel like moving) I have been able to resolve the extreme fatigue. I hope you find what works for you.