[FrancesParticipant]

My longstanding MGUS has just progressed this year – damn it – to the smouldering stuff. I have no symptoms and feel pretty well. But I'd like to ask all you reluctant experts – how do I know the difference between the usual aches and pains of an elderly person and the real thing? Will I be able to tell when I've stopped smouldering and turned serious? I'd be grateful for advice.

[tomParticipant]

Hi Frances

Well how can you tell ??:-S think we are all same the odd aches and pains and strains I imagine its come back :-S but I am told mine is just arthritis and or pulled tendons :-0 and am only 58 😛

but do what I do if in doubt get more bloods done My Consultans says peace of mind is good for us

Hope your not active for many a year

Love Tom Onwards and Upwards x

[MothasParticipant]

Before mine developed I was always told to look out for increased need to pass water, weight loss, aches and pains.
But Tom is right, best way of finding out are blood and other tests such as MRI and bone marrow biopsy.

[FrancesParticipant]

Thank you both- I guess there's no easy answer to my question. I'm having very regular blood tests now so they should pick up any change.

[jmsmythParticipant]

France's my husband Frank smouldered for 6 years before any treatment. CDT and STC was decided on as results of blood tests. To be honest not sure what test as PP's were dropping for months and then consultant decided to go ahead

Hope you smoulder for many years
Jean

[teds31Participant]

Hi Frances, I am 82 and been smouldering for 7 years, it feels very strange after a while you have no symptoms but still go every 3 months for the blood tests. As a matter of fact we have been today and the usual no change come back in 3 months. I asked again today about aches and pains and the man said if the pain goes away when you rest then its unlikely to be bone problems,its very difficult to know the difference ,best thing is keep on with the blood tests and try not to think about it much in between . Good luck .Ted

[mhnevillParticipant]

Hi Frances

As Tom says, it is very difficult to distinguish between arthritis and MM. I was diagnosed after a fall which isn't usual in MM.

I have lots of aches and pains, increasingly so, but it is the regular blood tests that show progression.

One thing that strikes me is, have you ever had a full body series of xrays? Because my aches and pains are increasing I am going to ask for one next time I go to the Consultant. This will show if I have any more lessions (weak spots). I have been on ZOMETA for over two years so I am hoping not!

It is hard not to worry,but I try to keep MM to the back of my mind.

All best wishes for many years of smouldering!

Mavis

[FrancesParticipant]

Thank you again for replies. Yes, I had a full x-ray which was okay. For the last few months my tests have been stable, though I'm still feeling tireder than I like. And getting little aches and pains which usually seem to go away; but I hate having to pay them so much attention! Are they? Aren't they? I shall just have to get used to being a hypochondriac.

[eveParticipant]

Hi Francis

I do not know anything about smouldering Myeloma as Slim was diagnosed later,but I do know from the last2 1/2 years,that you cannot waste time thinking about it. Mentally you should lock it in a cupboard and just get it out when blood test are due,forget about aches and pains,

My husbands does not show,and the only way to tell is his general condition and BMB,but when he came out of remission,he just new,if we feel very strongly about his condition,we do not just accept someone telling us he is ok,so listen to your body,it knows when something is not right.but we do lock the Myeloma away as we found if you worry about tomorrow,it spoils your enjoyment of today.Eve

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