Aching Muscles

[KRS8]

Hi Everyone. Not sure if this is an MDS issue but I have started waking up during the night with aching hands, arms, legs, and shoulders. It is not extremely painful, more a continuous ache which is extremely uncomfortable and only goes with alot of paracetamol. Has anyone else had this? Is this a symptom or not? I have been diagnosed with MDS since July and 4 weeks ago was started on EPO injections. I am seeing my Consultant again soon and can discuss with him but just wondered if anyone else had this problem. Thanks Kathy

[chris]

Hi Kathy

Sorry to hear (a) about your MDS diagnosis and (b) about your nighttime aching muscles. How are you coping with the diagnosis itself? Have you had a full explanation from your consultant, including your MDS sub-type and any chromosomes / mutations that have been found?

I don’t have MDS and am not on any treatment but I found the following link on the MacMillan website, listing the possible side-effects of EPO. When you next see your consultant, it’s clearly something you should discuss but, meantime, it might help to read this? Why it should affect you only at nighttime I don’t know but it must be a bit wearing if it’s disturbing your sleep?!

https://www.macmillan.org.uk/cancer-in ... oietin-epo

Hopefully, other EPO users may share their experiences. But there is always such a wide range of how people experience side effects of treatments or not, some people getting very strong reactions, others breezing through!

There are also some online (via Zoom) patient support meetings coming up that have some Specialist MDS clinician speakers and you could put your question directly to them. Here’s a link to the Events page for November.

https://mdspatientsupport.org.uk/events ... te=2022-11

With best wishes

Chris

[KRS8]

Chris.
Thank you for your reply. I have gone into the MacMillan site and looks like the EPO injections could be a possibility. Before talking to anyone else, I shall speak to my Consultant and see what he says.
Re the effect of the diagnosis, 5 years ago I was fit & healthy, losing weight, exercising with a trainer and at home and eating well. THEN the diagnoses came 1 after another. Ischaemic heart disease (3 stents), peripheral vascular disease (5 stents), unstable angina. I then had a fall and while recuperating from that I was diagnosed with MDS. I dont think it has really sunk in, or maybe I have just pushed into the back of my mind. I just try and keep going as usual and to the best of my present ability, outwardly showing all is under control.
Thank you for asking after me and for the help with the 2 websites, it really does help.
Best wishes
Kathy

[chris]

Dear Kathy

My goodness. You’ve had such a lot to contend with. Must have been so difficult to go from being so fit and healthy to having all these health issues, one after the other? Life can seem so unfair sometimes.

I hope you have got good support around you. Please don’t feel you have to put on a brave face on this Forum. Other emotions are available!

All best wishes

Chris
X

[KRS8]

Dear Chris

Thank you ... you are so kind.

Best wishes
Kathy

[RUSE7]

Hi Kathy,
Sorry to hear you've got so much going on, and MDS on top of all the rest, it must be tough.
Definitely talk to your consultant about the aches though! If anything doesn't feel right, raise it with them - they may be able to help.
I'm on EPO too, I've been injecting for about 4 years now. I remember when I first started on it I experienced a few problems - the most irritating one was headaches - they just wouldn't go away. They ended up reducing my EPO dose from 150ug to 100ug when I talked to them about it and that sorted that out. The other thing was tiredness the day of, and day after my injection. That has just faded over time.
I hope they can help,
All the best, Ronnie

[KRS8]

Hello Ronnie
Thanks for your reply to my post. I have now seen my Consultant but as I am relatively newly diagnosed he said to see how things go until my next visit in 6 weeks time. I have only been on EPO injections for 5 weeks and the numbers haven't moved enough yet. My BP is stable though which is good. I will just keep going and fingers crossed by 6 weeks my energy levels will have improved along with my muscle problems. It is so good to hear from other people with MDS. This is such a good forum.
Take care
Best wishes
Kathy

[RUSE7]

Hi Kathy, it takes a while for the EPO to start working to full effect. I think your red blood cells live in your body for about 4 months to so it's a slow process to get them boosted back up again. I started to feel the benefits of EPO after about 6 weeks but it took a few months to get my blood counts up to a decent level. I hope there's a little up-tick for you soon.
All the best, Ronnie