My Mum is feeling so tired all of the time

Fatigue is a common side effect of MDS.

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Colin1234
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My Mum is feeling so tired all of the time

Post by Colin1234 » 24 Nov 2012 14:25

My Mum has had MDS for 4 years and during that time she has had 70 units of blood. She has iron overload. She was on a drug trial for this but had to stop because of adverse side effects. Currently she is not on any treatment for iron overload. She is very fatigued and cant basically do any work in her home. Has anybody got any ideas on how to reduce the fatigue she experiences. Is it the iron overload causing this? I would be grateful to receive any comments about this.
chris
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Re: My Mum is feeling so tired all of the time

Post by chris » 24 Nov 2012 15:31

Dear Colin

I think the majority of people on this site would totally understand the fatigue that your Mum is suffering from.I'm not sure whether iron overload contributes to the usual fatigue already experienced due to low levels of haemoglobin but please do ask her medical advisors whether the iron overload could be making the fatigue worse.

Sophie is about to post on this site a new patient information leaflet on fatigue - not there just yet but keep checking this page as it will be here soon! Although it cannot take it away entirely, there may be some practical things your Mum could to to help lessen her feelings of fatigue.

http://www.mdspatientsupport.org.uk/wha ... -material/

Meanwhile, I think she does need to keep telling her medical advisors how fatigued she is as they may need to look at her transfusion schedule again. It might also be worth asking about alternative methods of iron chelation.

Wishing you both all the best

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Colin1234
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Re: My Mum is feeling so tired all of the time

Post by Colin1234 » 24 Nov 2012 20:27

Thanks for that Chris. Very interesting post. I have passed your comment onto my Mum.

Best wishes

Colin
janetstanford
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Re: My Mum is feeling so tired all of the time

Post by janetstanford » 25 Nov 2012 17:35

Hello Colin

i am blood transfusion dependent have been for 4 and half years now ....and yes i have iron overload i have 2/3 units of hb every 3/4 weeks so over a year i have around 28 units ......i take exjade every day this is prescribed by weight i am on max dose for my height / weight easy enough to take and it does do the job ...my ferritin is around 1900 at the moment and when i was first given this drug it was at a high of 6000+ (honest no kidding ) so by this you can see it does its job....
obviously your mothers age and illness will dictate what she can do daily and as you know the less you do the less you want to do ....there are 3 or 4 other treatments for overload see some of the other comments by delwyn who is on a pump and in the say hello section there are a number of posts on it (by who ?)these may prove useful :)
iron overload does make you tired and also it can give you muscle cramps which can be quite painful and obviously for the first couple of days after a transfusion you are tired its that up /down issue as i call it and as you will already know as the hb gets lower the less your mother can do ....i am due my next transfusion on tuesday and today the most i can move about for is a few mins sitting really is all i can do i made a cup of tea earlier and i felt exhausted after doing that so i know my levels at this time are under 8.5 units :) also when my levels get lower i do start to feel a little under the weather about being unable to do for myself maybe just maybe your mother may feel this way as well my other half has thankfully hovered washed ironed and tidied today ...
can you talk to her doctor nurse specialist they may be able to sort out some help in the home for her evn just for a short period of time also maybe the her gp /local or community matron service may be able to help there mind i am possibly listing all you have already know and done i do apologise if i have ....
anyway welcome to the site pleased you posted and do hope i have been of a help any questions please ask i do not mind at all hope your mam is feeling better today :) Janet
n.b some say wheat grass is good for overload available form holland and barrett very expensive £20 for 30 days one of our members posted this sorry can not remember name i believe he lives in france think it is under my barley grass post in say hello and general messages...
chris
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Re: My Mum is feeling so tired all of the time

Post by chris » 26 Nov 2012 15:43

Dear Colin

Janet truly speaks from the heart from her own experience in these matters! No wonder your poor Mum is sooooo tired. She is getting a double whammy from the low haemaoglobin and the high ferritin levels! As Janet says there are different options for iron chelation and they may not all give the difficult side effects that your Mum experienced on the trial she underwent. On the positive side, look for the postings from Meerkat on this site who had iron chelation which seems not only to have reduced her iron overload but also her haemoglobin levels - she is not sure why this has happened but she is aware of a good improvement.

I also found this information re iron overload and chronic fatigue is right there at the top of the list.

http://www.irondisorders.org/iron-overload

Before your Mum embarks on any food supplementation/ herbal remedies etc, it would be wise to check it out first with her medical advisors as some of these things have unexpected results and may confuse responses to other conventional treatments.

Again, some good practical suggestions from Janet about getting some extra help for your Mum if necessary as she is probably fretting about this and anxiety won't help the fatigue.

Hope some of this helps. Difficult for you, too, to see your Mum so wearied. Do you or your Mum live in an area where there are MDS patient support groups you might go along to? It does seem to help to be able to discuss these quality of life issues with others in the same boat. This website shows which meetings are coming up.

Take care

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
janetstanford
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Re: My Mum is feeling so tired all of the time

Post by janetstanford » 26 Nov 2012 18:08

Colin
OOPS sorry hope you do not think i was jumping in at the deep end so to speak was not trying impose my treatment opinions ect on you or your mam ...just letting you know my story and that i do understand what she is dealing with ect

and i would not suggest your mam takes the wheat grass just letting you know about it as an option there is research which suggest it helps to reduce iron overload and i am sure you are capable with a computer and can use google better than me

well sorry again take care best wishes to your mam hope she feels better soon :)
meerkat
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Re: My Mum is feeling so tired all of the time

Post by meerkat » 27 Nov 2012 20:59

Hello.
Fatigue is indeed a challenge!! The mantra I was told, when I was nursing was ' Plan, Prioritise and Pace yourself'. That always sounded pretty good guidance. On a more serious note, when I was given my MDS diagnosis in early 2007 I told my haematologist that I wanted transfusing from 9 to 12, rather than, for example, 7 to 10. I explained that I was working full time (at that time), running a home, and wanting to maintain a reasonable social life. I figured that if I was going to need 3 units of blood periodically, then why wait for my Hb to fall to a level that significantly affected my quality of life. I explained that a low Hb would probably mean I'd have to give up work too. Not a good outcome!!

Your mother may be able to discus the timing of her transfusions with her doctor. . If she received blood before her Hb dropped so low, then this may help her symptoms. Quality of life is incredibly important for people with chronic disease. Whilst I'm not advocating having more blood, it's just the date of the transfusion that could be adjusted.

When my blood ferritin was very high I didn't really feel any more fatigued. I found my fatigue correlated much more with my dropping Hb level. But that's just my personal view.

Bye for now

Meerkat

Oh - i'm still working. 4 days a week now. Work-life balance much better. And Hb still holding own (115 at last count)
janetstanford
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Re: My Mum is feeling so tired all of the time

Post by janetstanford » 28 Nov 2012 11:23

Meerkat

i am so impressed that you are still able to work.... and that your transfusions are such that you are able to your employer is so understanding ( i would guess that does not happen very often ) my doctor will not transfuse if your blood results are 9 units and over .....i was transfused yesterday my HB was a little over 7 i had lost 4 units in 28 days normally it is around 3 i loose in that time period i was at the "can not get out of bed stage " on the positive my overload in the last few mths had gone done by 20% which made me happy mind it is still at 1400 ish ...yours is so good i am pleased for you
Janet
chris
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Re: My Mum is feeling so tired all of the time

Post by chris » 28 Nov 2012 14:02

Dear Colin, Janet and Meerkat

The Fatigue fact sheet is now availabke as Sophie has put it onto the site. Here's the link:

http://www.mdspatientsupport.org.uk/wp- ... SHEET1.pdf

Sorry, realised I left a vital word out of my previous post which was "improved" her haemoglobin levels re Meerkat!!!

Amazing that you have been able to keep working full-time throughout, Meerkat and managed to negotiate the transfusions outcomes that were best for you. Good on you!! Your organisational skills must be superb. You must be loving the extra day off - makes all the difference doesn't it? My HB is 11.4 - though it does seem to be on a gradual slide. I can't begin to imagine how dreadful you must feel, Janet, when it gets as low as 7 but I guess that clinicians have a balancing act trying to ensure better quality of life with iron overload issues.

Hope the leaflet helps - it includes the idea of planning, pacing and prioritising I think and there will also be an article in the next Newsletter for wider distribution.

Best wishes all

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Colin1234
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Re: My Mum is feeling so tired all of the time

Post by Colin1234 » 04 Dec 2012 11:39

My Mum has just read all of your posts and found them most interesting. She thanks you & wishes you all the best for the future :)
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