[VickiParticipant]

Hi all

Worry beads and confusion are out in this lovely weather we are having! Colin is 6 months post sct. We are told two weeks ago his bloods are spot on. His crushed vertebrae is still v painful and he had an MRI in advance of seeing the back specialist (no active myeloma there so all good).

Colin can do bits and pieces (up ladder on weekend!! Not good!). However he is absolutely shattered all the time. We asked the consultant and she said it wasn't normal to be this tired 6 months hence……so what is it? She did not offer anymore tests. Tonight following doing a 50 mile round trip to meet family he can hardly walk up the stairs….he has just had blood test at GP testing for sugar level, iron deficiency or thyroid. Could he really be that tired from any of those……

I can feel myself building up a head of steam. If its not normal what is it :-(. Sorry to go on but I am a worrier

Vicki (Colin's in bed!!)

[tomParticipant]

Hey Vicki and sleepy Colin 😉

Well I am over 3 years post SCT and I still get tired if I do too much, am sure we never told them how tired we are or have been.

As you know Vicki I am in remission and drug free but do get tired easier these days :-/ and with that my Life work and play has to be adopted to fit at times, some days I could dig holes for England but other days I cant ??

Tom Onwards and Upwards xxx (ready for Bed Tom)

[VickiParticipant]

Tom

You make it sound sensible when you say it! I feel a bit daft but its when your brain starts working overtime and worry! You are spot on Colin does loads and then can't do anything….perhaps we are expecting too much! Tom wise words as usual 🙂

Have you been to Spain yet? Hope you had a great time if so 🙂 some sangria, oh and maybe a couple of vodkas!

Vicki xx

[tomParticipant]

Hi Vicki

Am pleased it helps and its true I get tired Even when we were in Spain (yep we have been and it was great).
Am sure we try to get back to what we had before, I know I try.
Oh and the Barman had trouble keeping up with the Vodka for me ha ha.
Take one day at a time Vicki and not to do too much our bodies' tell us when its had enough but am sure we don't listen to it he he

Love to you Both

Tom Onwards and Upwards xx

[meganjaneParticipant]

Hi Vicki,

If all the bloods are good that is good. 😀

Phil had his SCT after Colin (December 2012) but he has not returned to work as he had volunteered for redundancy (we were going to move to Devon) shortly before his diagnosis so he was job free during all his treatment. Despite not having to work Phil still gets over tired sometimes. Some days Phil will be up at 6am when I get up for work but other days he will sleep in until 11. It is getting better but if he does too much he needs to rest. I believe Colin went back to work quite quickly after his SCT? I am sure this takes a lot out of him. I think Tom is right, after a SCT it is important to sleep when you need to. Everyone recovers at a different pace, I think you need to keep the consultant updated about the fatigue but hopefully Colin's body is telling him when he needs sleep so he can continue to recover.

Phil and I are both in bed most nights by 9:30/10pm!

Megan

[AliParticipant]

Hi Vicki

My Mum still gets really tired, so much so that she just has to go to sleep, there is no choice in the matter. Sometimes you can pinpoint the reason for the tiredness, others there is no rhyme or reason to it.

My husbands cousin is a paliative care consultant, when mum was diagnosed I had a heart to heart with her. The main thing I remember her saying is that Mum would experience fatigue, that its the nature of the beast 🙁

Try not to worry so, have you booked a holiday yet? If not, why not?

Mums got bmb on wed, she's off all meds now. Feeling well, but tired. I still think Colin might be doing a bit much.

Love Ali xx

[tonyfParticipant]

Hi Vicky, I had my SCT early February, have gone from strength to strength, but like evryone else I get tired very quickly. I do all sorts of things including going up ladders, cutting grass, clearing out garage, walk the dog for an hour or so across the countryside everyday, you name it…..and I get very tired, can drop off in the chair at the drop of a hat then go off to bed and sleep for eight hours. Like you worrying about Colin my wife is just the same, she tries to slow me down to no avail!
Hey ho it's 10.30 time for bed.
Regards Tony F

[PerkymiteParticipant]

I think the description of being on a "roller coaster" ride is very apt. I am 2 years post SCT and am now on 2nd line treatment (just finishing my 4th cycle this week). I have always had ups and downs regarding energy levels. More so now I am back on Dexattitutde.

When I first joined this forum in 2009 you used to hear another phrase very often "Listen to your body" if it says rest bl++dy well rest".

I will take issue with several of you. You give the impression you have not watched the MyelomaUK excellent What is Myeloma Video. If you have not you should, Myeloma attacks and weakens bones. Repairing a broken Myeloma bone is not routine. The last place any Myeloma sufferer should be is up any sort of Ladder, ever! :-S

Kindest regards – vasbyte

David

[BADGERParticipant]

Hi Vicki
perhaps colins blood count is a bit low that can make you tired but it could be post operation blues i know its 6 months but the body takes a battering with an SCT he may be a bit depressed and not realise it i hope he feels better soon
Love Jo x

[VickiParticipant]

Hi all

Thanks so much for your replies…..clearly I am worrying too much and it's good to hear your experiences and reassurances. Jo you could be right as Colin went through a very low patch recently, almost like realisation hit. That said he's a lot better today, as the cycle seems to go.

Ali, we haven't booked a holiday yet, but at present we are having some work done at home. Costing a fortune! It would be great to,get away though sometime soon, probably,in this country though! How did you mum and dad get on with their cruise?that sounds appealing as at least there are medical teams on hand as well! Hope they had a great time…..do you have holidays booked soon?

Thanks again all

Vicki and Colin xx

[janwParticipant]

Hi Vicki

My consultant told me my energy levels should be back to normal three months after my stem cell transplant which was completely wrong and I felt miserable as well as worried that I was so exhausted, tired and slept for a minimum of 12 hours every night for a good year after SCT. I kept thinking my myeloma was returning because every bone in my body seemed to ache and I would start sweating easily if I tried to carry out household chores. I had to limit climbing the stairs because of the effort involved.

It's now almost three years since my transplant and although my energy levels have slowly improved over the years, I still feel as though my body has a certain amount of energy before it quickly loses its charge and needs to sleep/rest to recharge the batteries. I still have to rest for a couple of days if I want to go out for a whole day or to any special events and then rest afterwards for a few days to recover.

Hopefully Colin will steadily improve his energy levels over the forthcoming months. Try to keep a diary of his activities to see what makes him tired and see whether after the next three months if things are improving. Like others have commented, it seems very usual for some of us with myeloma to constantly suffer from fatigue.

All the best. Jan x

[DaiCroParticipant]

I agree with everything David said in his post!

[quote]http://www.youtube.com/watch?feature=player_embedded&v=4-2xw9efsuA[/quote]

Please watch this if you have not already done so and may I echo David's recall of: [quote]'Listen to your body, if it says rest then bloody well rest'.[/quote]

MM=Fatigue=MM.:-P

Dai.

[adamsp41Participant]

Hi Vicki…I am 30 months post SCT and still have bouts of fatigue and when I have queried it with the consultants it seems to be "part and parcel" of the treatment….I have stopped mentioning it at my clinic appt…some days I can do a short walk other days I struggle to get to top of the stairs…what I tend to do (stupidly) is think i am ok and take on too much at once (basic domestic chores)…and have to suffer the consequences later 🙁 wife says I sometimes think I am some sort of superman and repeatedly rollocks me…haha…stay safe…Phil

[VickiParticipant]

Hi all

Thanks this is very reassuring! Jan you seem to understand exactly where Colin is at! I thought it would be plain sailing after sct LOL!!! We seem to go from one thing to another!

We saw the pain specialist last week and although she great….didn't help Colin with comment about his back. He has one v bad wedged vertebrae in back at T12. She said shed had a brief word with back specialist who we see on 25th and she thought the cement thing into the vertebrae wouldn't be an option. What she couldn't tell us is what is an option. Now Colin's worried its nothing….minus the fatigue he's not too bad but the pain in his back is causing him to hunch and he can't walk too far at all. I thought they'd be bound to be able to do something to resolve one vertebrae fractur? We are told all his other bones in the back look good considering what he's been through and no spinal compression? Any thoughts all?

I hope you all continue to get better and feel well….this cure is only around the corner!!!

Vicki and Colin xx 🙂 and thanks again

[andygParticipant]

Hi Vicki & Colin.

Sorry to hear Colin is having problems. From everything I've read fatigue is a constant problem with MM both prior and post SCT. Though less so post SCT. I would agree with David and Dai that looking after his bones is a priority even though no myeloma is actively present because of the risk it could sneak back to being active without anyone knowing and breaks are hard to repair.
I know how Colin is feeling about his back. I start the day reasonably upright but can't walk, stand or even sit upright for to long before it gets painful and by the late afternoon I'm well hunched over. I'm waiting for an appointment to go under the knife for the "cement thing" kyphoplasty in my case to T11 and T12 hopefully to give me a bit of pain relief though I have damage to most of my spine top to bottom and the surgeon isn't very hopeful.
Funnily enough we are having my house done up too, Steph still has hers in Nottingham and that needs a little work too, but we still try to make it a priority to get away on holiday because we know that holidays will be the first to go as I get worse.
I hope they can do something for Colin's back and his fatigue improves in time but most of all that his myeloma stays inactive for a long time.

Every day is a gift

Andy & Steph xx

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