[CarolBradley1Participant]

Hello.
I´m new to this so hope I don´t make a mess of things. I am 56 and was diagnosed with myeloma in 2005. I started chemo (cyclophosphomide, dexamethasone and revlimid) last July and had a stem cell transplant with melphalan in February of this year. It has been a very difficult time of course but am in remission now. Only problem is the increasingly stiff and very painful joints – has anyone else experience this?
I know I shouldn´t complain after getting through so much but this constant bone and joint pain is becoming a real problem. My specialist has been very good at getting me through the treatments but now I am in remission seems not too interested just says it´s arthritis and general wear and tear – probably thinks I should just be grateful to be here I suppose and should learn to live with it and can you blame them?
Anyway, good luck to everyone and especially those getting ready for transplant.

Any suggestions for helping with painful and stiff joints – supplements and excercises etc I would be pleased to hear. At present I am slowly getting back into riding my two horses which surprisingly does seem to help!
Particularly keen to hear from anyone also involved with horses and still managing to keep going with them

[brochoParticipant]

Hi Carol welcome to our happy little band , I am sure you will get lots of replies. Bone pain is very common and doesnt necessarily go after an sct . Your consutant doesnt sound very helpful perhaps if you had a chat with the specialist nurse and rxplained how difficult it makes life being in constant pain . I have extensive bone damage and the first question my doctor asks at clinic is how my pain is . I have been on slow release morphine tablets since 2007 and recently changed to Oxycodene . I hope you get some relief soon its awful they have not been very helpful so far but no-one should have to live with constant pain . Let us know how you get on Best wishes Bridget

[tomParticipant]

Hi Carol

Sorry to hear about your Pain:-( no one should have to suffer the pain.

I see you do Horse riding (they scare me) I hope it isn't that that causes the pain? I know after I do things at home/garden I normally suffer a bit of pain.

I am about 16 Months post stem cell transplant and am in remission.

Good luck on your pain relief.

Tom "Onwards and Upwards" xx

[PerkymiteParticipant]

Hi Carol, Again, sorry not a horse person.

I had my SCT in Dec. I started to have lower back pain about 12 weeks ago. An x-ray confirmed that is was my old, worn hips (which I already knew about) was the problem. I take nothing for them but I am very active, including cycling, and like you I find keeping mobile and active does help. Sitting in a comfortable arm chair watching a night of TV is not a good idea.

As it is not Myeloma related can I suggest your go see your regular Doctor there are some low level pain killers he could prescribe like Tramadol, which I find very good.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

16 months already Tom, wow. And, still going "onwards and Upwards" well done. The red wine and cucumbers in my greenhouse must have done some good then:-D 😀

kindest regards – Vasbyte

David

[DaiCroParticipant]

Hi Carol,

In remission and riding horses is hardly likely to draw much sympathy:-) But I understand where you are coming from, there is always the fear that it might be 'more' than 'just' arthritis and wear and tear and that is totally understandable and for that you have both my sympathy and empathy.

Refuse complacency from your medics. Ask your consultant about biophosponates.. if you are already on them and heshe rules out infusions (Zometa) as an alternative then go with David and get your GP to give you pain killers to mask the pain.

I suspect that ruling out anything nasty will help as much as anything – the rest is just white noise.:-)

Dai.

[PerkymiteParticipant]

Hi Dai, I have been on Bioposponates (glad you spelt that 'cause I could not!!) since Aug 2009. I am Loron which I take every day, at night, you have to have two hours each side of taking Loron with no food, milky drink etc.. Luckly Guinness and Brandy do not come into it 😀 . I have had no side affects whatever from them. I do not think they will help with "old Age" bone pain, might be wrong but Loron has had no affect on mine.

Kindest regards – Vasbyte

David

[tomParticipant]

Hi David

Yep still up and runn:::::::::::walking ha ha, and yes your red wine and cumbers did me the world of good 🙂

One "Upwards and Onwards" Tom 😀

[CarolBradley1Participant]

Thank you to everyone for help/advice. Changed pain relief and so am feeling much better. Just had my first proper hack out with my horses since last summer helped by my super husband who built a special mounting platform for me which my horse Harry has taken to like a duck to water. Whatever your passion is try not to loose it – you might have to find an alternative way to do things, might take you five times longer but what the heck? as long as your still enjoying your sport/interest it will help you cope with everything else we have to deal with.
Best wishes to you all. Kind regards Carol

[ElizellenParticipant]

I am so glad to hear you have been able to get back to taking hacks, Carol, you must really have missed being able to get out for a decent ride!

And it is great that you now have effective pain relief too. 🙂

And I noticed in another post that you are now in remission, may this last for a long, long time!!

Eliz
XX
X

[CarolBradley1Participant]

Hi Eliz

Thank you for taking the trouble to write. I still can´t quite believe that I am in remission myself! Yes, my first ride was a real triumph, not just for me but for my horse who has never quite understood why mum wasn´t out and about. He was really cross whilst I was away having my transplant and made sure that I new exactly how upset he was when I did eventually get up to see him. Also, for my husband who has done just about everything to keep me going this last few years when, on occassion, things were looking pretty bleak and even the medical team stopped making positive noises – but he never did and has built me a special ramp so that I can climb aboard Harry safely and with confidence for us both.

How are you? Do you have any hobbies to drive your friends and family mad with (I think I bore all mine to bits). You sound lovely and positive – really upbeat which helps everyone I am sure. Are you in treatment at the present? Sorry to be nosey, I quite understand if you would rather not say! I am back in chemo (despite being in remission) but am able to just take tablets at home this time so nothing to complain about at all. Just so very appreciative of everyone who has helped get me to this point.

Very best wishes

Carol
PS.
Would anyone else interested in horses contact me – would be good to encourage each other and just chat with someone who feels the same way.
Take care

[tomParticipant]

Hi Carol

Great to read about your remission:-D I have ben in remission for some time now, but it never made me want to get on a horse? yep am over 5'10 and the scare me to death ha ha, gosh they are so big and scary.

Am also with you Carol if you love it this MM cant stop you doing it and as you say its just at a differant pace 😀

Stick with it and good Luck with your Horse 😎

From one Scardy cat

Tom "Onwards and Upwards" xxx

[CarolBradley1Participant]

Hi Tom

Hope you are keeping well and enjoying your remission – we are lucky to be here arn´t we?

Thanks for a lovely, cheerful and positive note – so very welcome! Just to let you know that I rode my husband´s horse yesterday who hasn´t been out of the field for a year and didn´t really see why she should have to leave her buddy (my horse Harry) behind. Anyway, she had a tantrum on a steep hill with a que of traffic both ahead and behind us. She couldn´t decide wether to buck or rear and to be honest I was frightened and was just wondering how I could get off safely when something "clicked" and I got just cross enough to put my foot down and remind her about manners. At once, she started to behave and we ended up having a lovely ride – I think my initial nerves when we started out must have passed to her and I had rattled her a bit – horses pick everything up.
Anyway, although I had to go home and slept like a log for the rest of the day I feel so pleased and feel as if I have made a huge leap forward this last week both physically and mentally – it´s hard getting the confidence back isn´t it just to do the things you have done almost automatically all your life. Glad I didn´t jump off now! Suppose I should only tell you about the nice placid rides or I shall frighten you off horses even more.

Hope things remain positive with you.

Love Carol xxx

[tomParticipant]

Hi Carol

Well a well done you for getting more back that you felt you had lost 😀 its something that would have come natuarly to kick downon the horse to let it kknow who is the boss, well done you.
Good to hear you are back into taking not just your own but Hubbie's horse out, its anothe step forward:-) to as normal as we get with MM :-S

Like the Fact that when you went home you slept like a log it shows you are in touch with what your body needs and that is rest after a day like you have had.

And Carol you tell me about your horses the way it happens am not scared of them in type ha ha (only when am next to them)

Am sure after reading your post you are a strong lady that will cope with all that is thrown at you with this MM 😎 as I say "Onwards and Upwards" to us all:-D

Love

Tom "Onwards and Upwards" xx

[Author]

Posts