[dwthancockParticipant]

Hi all

Would appreciate any help and advice or to hear other people’s experiences.

I was diagnosed with myeloma in Aug 23 following a couple of years of severe back pain. I had surgery to stabilise my spine and thankfully that has helped massively with pain but I still experience some discomfort and am unable to do some physical activity. I have responded well to all treatment and am nearly 2 years post SCT but I do seem to be experiencing more fatigue and brain fog these last few months. I’m 41 and have an 8 year old daughter so would love to be able to run and jump about with her or to go to a festival for the weekend with some mates but I feel like I need at least a day to recover from the slightest activity these days.

When I mention fatigue to my consultant he seems pretty confused as if fatigue isn’t something that should affect me. I think it’s because I’m relatively young to have myeloma but it is extremely frustrating to be faced with a bit of a brick wall with it. I’m in the middle of trying to change career and am planning to start a business in the next year or so and would really love to have enough energy to devote to it as is necessary. Any suggestions for managing fatigue? Should I down a Red Bull or drink an espresso every hour?

Also, when I mention anything to do with pain my consultant will not prescribe any medication. He eventually referred me to a back specialist who gave me an epidural but that has done little to help my pain and will have worn off by now. Other meds such as tramadol and gabapentin aren’t very effective either. Does anyone have any suggestions for effective pain relief?

I really appreciate you taking the time to read my post this far and if you have any advice about dealing with fatigue or pain or how to get through to consultants that are really nice but don’t seem to listen too well then please respond.

Many thanks

DWT

[rabbitParticipant]

Hi DWT,

Sorry, I only just say your post.

Pain: you are entitled to get a referral to another consultant. A haematologist/oncologist who listens and acts is invaluable. It sounds as though that is not your situation, so maybe change consultant altogether. In short, kick up a fuss!

Fatigue: what maintenance are you on? Is the fatigue getting worse? I have a couple of thoughts based on experience, but first I want to check whether they are relevant.

Regards
Rabbit

• This reply was modified 2 weeks, 6 days ago by  rabbit.

[dwthancockParticipant]

Hi Rabbit

Good to hear from you. Hope you’re keeping well.

In so many ways my consultant is superb which is why I’ve stayed with them this far but my main issues are the pain and fatigue.

I’ve just come down to 5mg of lenalidamide from 10mg. I was off it altogether though for about 6 months from Aug till Feb. I’m also on denosamab and daratunamab injections once a month.

The fatigue is definitely getting worse. It used to be that I’d need a day every other week but now it’s a whole day every 4-5 days and very often an afternoon nap in between. I feel the tiredness but there is part of me that feels I could push through it at times rather than give in so easily.

I’ll kick up more if a fuss about the pain.

[rabbitParticipant]

Hi DWT,

It was my guess that your fatigue was getting worse and that you were on Lenalidomide.

That was my experience: the side effects of it sometimes get worse over time.

I was going to suggest discussing a reduction in the dose, but you have done that, and 5mg is generally the lowest dose.

Also, as you went off Lenalidomide altogether for 6 months, it doesn’t sound as though that helped.

The other suggestion is lifestyle oriented: exefcise. I know that exercise while already fatigued is damned hard – I have done it myself, and it took all my willpower.

This is really where ‘pushing through it’ counts. This factsheet may help https://www.myeloma.org.uk/library/exercises-for-myeloma-patients-infosheet/
Despite what it says, I suggest that you go hard on cardio (except when there is pain).

There is a lot of evidence that exercise reduces fatigue, as well as improving the prognosis.

Regards
Rabbit

[dwthancockParticipant]

Thanks for the suggestion. I’ve always done the minimal of exercise and it’s even harder now with pain and fatigue. But I will push through as much as possible. Cycling is about the only exercise I really enjoy and hopefully the brighter weather will help get me out a bit more. I’ll try to broaden my routine as well.

How long did it take for your fatigue to improve? Do you still feel it or does it creep up despite your exercising?

[rabbitParticipant]

Hi DWT,

A bit of background first. I had been exercising most days – some might say obsessively – for many years, both cardio and weight training.

When I was having chemo for active myeloma, that stopped as I had no energy, but as soon as I went into remission I was back in the gym.

How long did it take for your fatigue to improve?

Short answer: about 6 months. I had lost about 16kg (I had been far from obese) despite not having a stem cell transplant. As I had been resistance training before, I had been muscly but that had gone and my spindly arms and legs took about the same 6 months to get back to the state and strength that they were before. All that I had was willpower, muscle memory and ‘normal’ memory (I knew what to do). I have since put back on about 11kg, again mostly muscle.

I do walking (for gentle cardio), cycling in the gym (for intense cardio) and resistance training (for strength – although please get advice on this first if you do it to prevent further pain or fractures!). I used to run: my body has been refusing since diagnosis, but I am hoping to persuade it!

Do you still feel it or does it creep up despite your exercising?

I get some fatigue, even though my Lenalidomide was stopped some months ago. However, I do go hard on the exercise (today was an hour with heart rate at around 140bpm plus 8km of walking). I could go easier – and I would if I still had young children (mine have grown up) and use the difference on ‘playing with kids’ exercise!

Regards
Rabbit

[dwthancockParticipant]

You are an inspiration!

The hardest part is always getting started. I’ve done routines before and felt much better for it but never been able to make it a long term habit. Myeloma, pain and treatment all have an impact and although I’m still relatively young I’m not 21 anymore either. I need to be a bit more accepting of that but I’ve no real excuse of not at least doing a bit more gentle exercise. Every little helps.

[rabbitParticipant]

Hi DWT,

Thank you for calling me an inspiration!

A couple of suggestions for making a start.
– As you have an 8 year old, that sounds the perfect age for her to pester you to exercise!
– A smartwatch might help too in terms of tracking how you are getting on. In terms of cost, I haven’t bought a gadget new for years. CEX does good quality smartwatches secondhand (although the choice may be limited).
– Distraction. One advantage of cycling in a gym is that I don’t have to worry about safety. I routinely play music loud and even read as I pedal!
– By all means push yourself hard, but don’t beat yourself up about needing to rest and nap. Although I don’t generally nap these days, my wife and I visited friends of hers; I got tired, asked if I could lie down on their sofa, and slept for a while!

I hope that this helps.

Regards
Rabbit
PS When I mentioned my weight loss and gain, I didn’t mention the context. I am a 6 feet 4 tall man, but even then an 18kg weight loss was a lot.

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