Fatigue syndrome ?

[poverello]

I am new to this site. I can't get a straight answer from any of my doctors re: fatigue syndrome. I think I got it. Can one be tested for this?

I live in Omaha, Ne. All my doctors are at University of Nebraska Medical Center. It's a good hospital and med center.

But I still know so little about my fatigue, and I am only 68 yrs old.

I do exercise, but can walk very far. Maybe 2-3 blocks at a time.

Is it a nutritional issue. Help

[francesb]

Hi, I'm afraid fatigue is a symptom of MPNs and we all live with it. Some say exercise helps but many don't have the energy for that! My consultants have told me its "part of the disease" and there's nothing to be done about it. They also told me rest does not make it better. Sorry and good luck, Frances.

[Ebot]

Hi. Which MPN do you have and which treatment s are you on for it eg venesections? And what are your Hb and ferritin counts like? That might give you a clue to factors exacerbating your fatigue.

[poverello in reply to Ebot]

I am so new to this . I have a few questions.

1. What is MPN?

2. What is eg etc? venesections?

3. HB and ferritin counts?

Thank you

[Ebot in reply to poverello]

Hi. MPN stands for Myeloproliferative Neoplasm - a chronic blood cancer. This Forum is for people who have been diagnosed with an MPN - Essential Thrombocythemia, Polycythemia Vera or Myelofibrosis.

Have you been diagnosed with an MPN and have a question about fatigue - which some people with the condition can suffer from? Or Is your concern about fatigue in general? (In which case this is not the best Forum for you.) Hope this helps.

[Wyebird]

Hi poverello,

I too suffer from fatigue but maybe not as badly as others. I’ve lost a good 20% of my energy. I’m Calr Et. What are your haemoglobin ferritin and b12 levels?

I’ve noticed a direct corolation between my haemoglobin and my platelets. I struggle to stay at 111. However I can’t have iron supplements because because my body store is full.

I also know that yes sometimes dragging myself into the swimming pool does help. Other times a day in bed is needed.

Does this help?

I do hope you improve.

[poverello in reply to Wyebird]

Should I be. Taking iron supplements. What questions should I as when I see my primary Doctor next time. I am 68 male 6feet tall, 241 lbs, and I have sleep apnea and trying to adjust to a Capp machine for the second time now, only two months. Should I get a review of all my meds?

Thanks.

[Wyebird in reply to poverello]

Hi it’s very important not to take any supplements without your doctor’s support. Just ask for a copy of your blood tests. See if you are deficient in any thing and then question why? I’m low in haemoglobin which is a sign of anaemia. A test of my iron ferritin and b vitamins show that my stores are high I can’t make the damn stuff!! Iron tablets for me is dangerous. My body will have too much of it. You could be different.

You also need to take vitaminC when eating iron rich food. That helps the absorption of it.

First stage Explain how you feel,maybe ask your doctor if you are anaemic.

Hope this helps. Good luck

[JSKly]

Fatigue is very much part of MPN ‘a from my experience and reading. There are no quick simple answers which may be why the medical people haven’t answered your questions to your satisfaction. We are all different and with fatigue as with other symptoms have to find our own way. It is certainly a recognised symptom. For some exercise is a big help. For others only a limited amount is possible.

My own fatigue varies day to day and a good diet helps as does a bit of simple exercise.

82 yrs . Pegasys for last 16 months. Before that Hydroxy carbamide for many years. I was diagnosed with PV in 1999.

[poverello]

What is Calr Et ? b12 levels.

Sorry I am so new to this. I am no medical genius.

[Wyebird in reply to poverello]

I have ET essential Thromboycemia. Some have PV others MF.

My ET is caused by a mutated gene (Calr)

Google MPNvoice.org.uk

It is an extremely good and supportive site. It has all the information necessary to understand your condition.

In addition use this site as many times as you want. I’ve picked up on some really useful information and support.

It seems to me your doctor has not been very informative. I do hope you find this helpful.

Keep me posted

Good luck

[poverello]

What is Pegasys ? What is Hydroxy carbamide and PV.?

[katiewalsh in reply to poverello]

I think you are on the wrong forum. Unless you have bone marrow cancer you are on the wrong forum. Katie

[Mwalimu]

How do you know you are in the right forum? This site is for people who have been diagnosed with an MPN ie ET, PV and MF. If you have none of these, the replies you receive from us are not relevant to your situation.

I hope you find someone to help you soon. Sallie

[Mazcd Partner MPNVoice]

Hi Poverello, it would appear that you have posted on the wrong site, hopefully you can find some support from another organization. kind regards, Maz