Cycling and MDS

Please post here your experiences of MDS as a patient, carer, family or friend

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Sussexmalc
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Joined: 25 Sep 2015 18:32
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Cycling and MDS

Post by Sussexmalc » 20 Oct 2015 18:39

Hi I have RCMD watch and wait. I am a very keen cyclist (last year I cycled from Paris to Nice in 6 days). I have cycled across th Alps and until June this year regularly cycled 20 miles a day. I kept feeling tired and despite a good night sleep still felt exhausted.

By a chance visit to the Dr a blood test followed by bone marrow biopsy I was diagnosed. In what would have bee a 180 miles in 24 hours ride I had to give up after 35 miles. I was more than tired I knew there was something wrong the eventual diagnosis confirmed.

As a watch and wait and no treatment does anyone know if I can get back to something like 100 miles cycling in a day? I am 53.

Thoughts or experience welcomed!
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Cycling and MDS

Post by chris » 21 Oct 2015 14:36

Hi there

Sorry to hear you have been diagnosed with MDS. I hope you have been able to get infromation about it. Please contact Sophie if you have any questions as she has lots of written material she can send you.

There are quite a few posts on this Forum from people like yourself who were supremely fit only to find they had to cut back on their sporting pursuits because of MDS. It must be so much more of a loss than for people who aren't particularly physically active.

Regarding your final question I think you should first ask your medical advisors. Without wishing to sound alarmist, clearly having anaemia impairs the body's ability to carry oxygen around the body, resulting in your heart needing to beat faster to ensure oxygen delivery. Cycling 100 miles a day sounds like a big ask - even for somebody who is not anaemic! Whilst it is always good to exercise to an extent, you need to find out where to draw the line between a healthy amount of exercise and a level which might cause other problems - e.g. with your heart. As you know, MDS is not a condition which improves over time so you may have to accept that you will just not be able to do the gruelling rides you have done in the past - not without consequences anyway!!

I wish you well

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Cycling and MDS

Post by chris » 21 Oct 2015 18:28

Hi again

Here's a thread which sums up a lot of the dilemmas faced re exercise and MDS. Hope it helps. You may get other posts from MDS Patients who are still pretty active but how you feel should be your guide - as well as sound medical advice!

http://www.mdspatientsupport.org.uk/for ... it=running

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Sussexmalc
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Joined: 25 Sep 2015 18:32
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Re: Cycling and MDS

Post by Sussexmalc » 21 Oct 2015 19:29

Thank you for this much appreciated.
JinnyG
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Joined: 26 Jun 2016 14:30

Re: Cycling and MDS

Post by JinnyG » 02 Jul 2016 11:18

Hello there.

I am newly diagnosed (19th April) at 69 years. Have always been a keen mountain walker and took up cycling again about 8 years ago. I never did the high mileages that you did, Sussexmalc, but then I'm a little older! Before the results of my biopsy it was clear I had anaemia with a low red cell count and the haematologist advised me to slow down and be aware of the lack of oxygen getting to my vital organs, especially my heart which could suffer strain and I'd be heading for a heart attack. Since diagnosis (RCUD), I have come to terms with the fact that, whilst I can still cycle, I need to watch my heart rate. There's a lot more low gearing and I have to walk up steep hills - am considering an electric bike next year! It's the same with the walking. I'm great on the flat and downhill but as soon as we get to an incline, I have to slow down and monitor my heart rate. I'm coming to terms with the fact that climbing mountains may not be an option anymore - my husband says I can - but very slowly!! I shall keep going as I always have for as long as possible but, with MDS, you have to cut your cloth. I'm so sorry that your condition has hit so young, Sussexmalc but you do really need to be aware as to how this illness can effect your oxygen levels when exercising hard. Get an electric bike, turn the battery on to help you up the hills and you can keep cycling for years yet!

Regards,
JinnyG
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