Page 1 of 1
Posted: 15 Jun 2013 13:17
Hi everyone - could I just ask whether anyone knows if fatigue is a definite symptom of MDS? I have days when I feel completely drained and it's debilitating. At the same time I also seem to get pain in my muscles and bones. I am not anaemic (although my ferritin levels are low) but I am neutropenic. Does this cause fatigue?
Posted: 15 Jun 2013 14:57
Yes Yes there are days when I feel very tired usually when my Hb is low, also legs feel very heavy and muscles and bones do ache, find it hard to get out of bed sometimes, however I make myself go for walks and try and keep to a normal routine with rests in between, on good days I play a round of golf and find because my mind is on something else I tend to forget about being tired. Had a transfusion a couple of weeks ago so Hb 9.6 which is a lot better as I was 7.6, have had my medication changed since being up at Kings last week so hopefully that will keep my Hb up. Have to say Kings is fantastic, went through my history with the consultant and she spent a lot of time with me, also saw Geki and Sophie always so supportive, feel very lucky to have them all. There are a lot of web sites on MDS fatigue well worth reading, hope you are feeling ok at this moment best regards Tina (Christina) MDS/RARS
My medication at the moment is 500mcg Darbepoietin weekly and GCSF 263mcg twice weekly.
Posted: 16 Jun 2013 20:46
Thanks for your reply Christina. It's good to hear that you keep active. I think I should do more exercise but find that my days at work really tire me out so then I don't feel like doing much on my days off. But maybe I should do something. The thing is that I worry about overdoing it.
I have been looking online for articles to do with MDS and fatigue. You are right - there is a lot of information out there. I found a really interesting one which says that you don't necessarily have to have a low HB to suffer fatigue. I found this reassuring because my HB is fine at the moment and was getting a bit worried about feeling so drained. I still don't fully understand what causes the fatigue though!
Posted: 17 Jun 2013 11:19
I had to chuckle at your post!! I thought you would be absolutely inundated with replies saying YES YES YES - fatigue is most definitely a symptom of MDS!!! It is the defining disease feature for people whose Haemoglobin is affected.
What seems interesting is that in your case you say your Haemoglobin is normal. Do you know what it is? I also have normal Hb levels (11-12) but my neutrophils are usually around 0.6 and my platelets 75-ish. Most of the time I feel fine and indeed have quite a lot of energy - I walk a lot and we have a large allotment to dig and work and lead a busy life. Just occasionally though I get really bad pains in my shoulders and feel quite wiped out. The pain and the tiredness seem connected and I understand that an enlarged spleen (which I have) will lead to left shoulder pain. Whether this is connected to the MDS I don't know as usually fatigue is attributable to the red cells.
Is there anybody else out there with MDS whose red cells are OK but who suffers with fatigue?
Posted: 17 Jun 2013 20:00
Yes - I had thought there might possible have been more people out there with fatigue as a symptom
My HB is around 10-11. But my ferritin in my bone marrow is very low and I am classed as 'iron deficient'. I find all this confusing - not sure how it works that I am iron deficient but not anaemic
So it would be interesting to find out if anyone else is in a similar situation.
Still really trying to understand this disease.
My neutrophils vary between 0.7 - 1.3
Thanks for your reply Chris - it is so good to hear other stories and pick up some tips.
Posted: 20 Jun 2013 11:45
Everybody responds to low levels differently and I would have thought an Hb of 10-11 would be classed as mild anaemia as 12 seems to be the cut-off for women. So that could explain your fatigue even if it is not very low in the context of people needing transfusions. Hope you can take the advice in the fatigue leaflet on this site and that it helps you to pace yourself and make best use of your energy!
Posted: 20 Jun 2013 17:12
You are quite right 10-11 is considered mild normal bloods are 11-14 |(|woman) for instance there were times when i was at 9 and i was sent away till the next week as my hospital did not transfuse untill under 9 ect and another example is if my bloods at 8 i would then be given 3 units to bring me up the lower end of normal of course after about a week they would drop below 11 and then it was just a matter of time till another transfusion andall the symptoms that went with it
hope you are all well