Remission and pain

Hello. I am in the very fortunate position of being in remission from myeloma for nearly two years. I have been getting a lot of upper back and neck pain and honestly it is causing me such a lot of stress as well as pain!
I have been quite active and maybe I have just overdone it (I have played football again for instance) but today am really struggling and all I did yesterday was play table tennis with my son!
The myeloma did cause lesions in spine and neck and I suppose it could be that and I have just have to accept I can’t do the things I used to.
I am v glad to say my paraproteins are at zero so everyone at jospital seems relaxed. It’s just very painful.
All the best to anyone reading this.
Mark

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Hi @md67. It’s good to hear from you and to get an update.
It’s great that the hospital are pleased with where you are. Have they said what could be causing the pain? Pain like that can be relentless can’t it. I hope it eases a bit for you today :blush:

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Hello@md67,I am sorry to hear that youre experiencing pain and stress although as you say you are in remission just now and that your paraproteins are at zero,good news.
It is difficult having chronic pain and as you say you had lesions in your back and neck which is where youre having pain now.

I am on watch and wait for MGUS ,no lesions ,but my paraproteins are increasing and I have sn abnormal ratio.
I have arthritis in my neck and lower back which is a “pain”.
So
Earlier this year I got a book out the library CBT for chronic pain and it did help me plus I use the BCUK mind and emotions videos to relax and breath.

I was seeing a Neurologist who said to me that pain causes stress and the stress makes the pain worse,then that causes anxiety well yes,true so ive had to find a way of living with the flare ups and avoid medication.

So far ive managed with ice packs and a microwave cushion ,rub on voltarol heat and ice may help you too .What a palava.

Thats great that you have been back playing football but maybe have overdone it ,you soon know and its hard having to reign it in but really good to keep moving.:+1:

I got fed up recently when I couldnt walk the hills I was used to walk so now I stick with more gentle daily walk with poles and doing stretching exercise .

It is a matter of acceptance (so ive been told ,)but its hard @md67 and I hope all is well with your family and that you can get some releif.
Keep posting

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Thank you so much for your response and good ideas. Acceptance is so important I agree - I am not there yet but trying!
The pain has been horrible today and as I also have diabetes it’s not good for me to be sitting around. But your message really helped and I do have some voltoral and will also pick up the other ideas you mentioned.
Worried my football career may be over now!

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Hi @md67 good to hear from you again but so sorry to hear about your upper back and neck pain which is also causing you stress and in my case makes my pain worse
Perhaps it is worth talking to your specialist nurse/medical team, especially if you have had lesions in that area before,
I find it is so difficult to feel grateful for my test results when I am in so much pain.
Constant chronic pain is really debilitating, draining and stressful.
Please do let us know how you get on, look after and be very kind to yourself.

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Thank you for your response @md67 yes having to accept letting go of something is a hard one .I am glad that you might try some of the things I mentioned.I am lucky as I have access to a hydro pool so I can enjoy exercising in the warmth and its very soothing. @Erica has said about talking to your team ,my GP says if I have new symptoms to get checked out if that is something you would do.What is the saying ,“a problem shared”.I see there is a football thread on here ,im not sporty though but it looks a popular thing.
I hope you get some releif.

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Hello @md67
That’s great news that you’re in remission from myeloma but I’m sorry to hear about the pain. I have found CBD Muscle Balm Extra rub helps with myeloma bone pain (available from Holland and Barrett). It’s annoying when pain gets in the way of exercise. Hope you’ll soon be back on the pitch :soccer:

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Hi I have to find that balance between doing enough to not stiffen up and not doing too much as to over do it. This warm weather certainly helps me , but I then overdo it a bit in the garden.
Exercise is definitely good but I definitely can’t run triathlons like I did but I am also older than I was but I can do yoga. I think it’s about recognising what is ok for your body now and building it up slowly.
When I overdo it which is all to often as I have an allotment I find a CBD joint massage bar from Lush helps ease aches and pains.

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Hi Jules,
The CBD joint massage bar that you recommend sounds good. The Muscle Balm extra that I use does not have an appealing smell whereas Lush products always have wonderful aromas - I may investigate! Thanks for the handy tip.

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Hi @md67 I’m sorry to hear of this pain you’re in, it sounds really tough. Have you made your key worker/clinical nurse specialist aware? If not, we’d really encourage you to keep them updated and be honest with how it’s effecting you and your daily life. You could ask your CNS to refer you to physiotherapy to improve your core strength, and also, you may be able to be referred to a pain clinic by the Haematology team too.
Myeloma UK have this ‘Pain and myeloma’ info-guide, that you might find useful as it talks a bit about the causes and also treatment of myeloma related pain - Pain and myeloma Info-guide - Myeloma UK.
Take care, Alice

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Hi
I have myeloma and multiple lesions in spine neck ribs pelvis shoulder
There are lots that I can’t do anymore like heavy lifting as my T12 has lesions as does my C3 T9
As the lesions don’t heal they are painful but mine have eased since my transplant and maintenance chemo I try not to aggravate them and I do know when I have overdone things which I mange with paracetamol
Pre transplant I was on oxycodone 20mg with 600mg gabapentin and paracetamol
I’m making the most of this lower pain as I know as soon as I relapse it will probably cause more lesions as I have boney disease
I also have 3 monthly Zometa which helps with the pain

I can’t ride a bike or take long strides so football would be a no no for me :smiley:

I do keep fit/ yoga via zoom for living with cancer and I try to do 10,000 steps around my home circuit
Im probably fitter now since lockdown and I’m still shielding

I think my pain is less as I’m more relaxed and less stressed being at home where I feel safe

Is there any other position in football that you could alternate with say goalie for a bit so that you can continue playing

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Also ask to be referred to palliative care they are brilliant for pain management

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I have just arrived in Croatia for a holiday in the sunshine, I’m sure it’s probably in my head but I do find the sunshine and heat makes my bones ache a whole lot less. The last three weeks I. The UK have been a dream for me whilst the rest of the country was melting and my garden looks terrible I have been delighting in the heat and sunshine, attending sunrise yoga on our local beach it’s been just wonderful. This morning we left the UK in the rain but have arrived to hot sunny weather in Croatia- a happy Julia. I use an infra red lamp in the winter that helps me too . I really do need to keep warm, I find gentle exercise like yoga brilliant too.

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Have a wonderful holiday @Jules ! :parasol_on_ground: :dark_sunglasses: :sunny:

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Thank you @2DB for the suggestion of the exercise videos on ‘Living with Cancer’. I think I’m going to give that a try.

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Hello @md67 I was diagnosed with Myeloma in 2018 and went into remission proper in 2019 after my stem cell transplant. I had quite a long remission and I do feel it in my back and legs even during the good times. My diagnosis came about due to an l2 compression and my back has never entirely been right since even after radiotherapy. I can’t do things that are very strenuous or involve bending or stretching or carrying and I can’t walk the sort of long distances I used to be able to. unfortunately I think that’s normal and doesn’t indicate anything in particular wrong. I’m starting to relapse now and will probably be back in treatment before the end of the year. i hope your remission continues for a long time and try not to worry about the aches and pains. Good luck!

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Hi @Franko,

Thats a great encouragement that you had a good remission after your Stem Cell Transplant. I’m sorry to hear that you are relapsing now but it sounds as if maybe the changes are happening quite slowly? I hope you can have peace of mind that there are so many other treatments for Myeloma available now. And in the meantime that you will have a lovely summer :sunglasses:.

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