I’m a newly diagnosed Myeloma person, after struggling with some horrid symptoms, I’m wondering what symptoms others have had and whether they improved as right now I feel stuck in a very dark tunnel struggling with my mobility. I started treatment 2 weeks ago and I’m desperate to be able to walk a bit more normally again and not be in so much discomfort.
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Hi @MariaWatson I am glad that you have found us so quickly after your diagnosis.
Something I struggle with is knowing what symptom is due to my diagnosis and which is completely separate.
I attach the Blood Cancer UK details on Myeloma
Myeloma | Blood Cancer UK
I am so sorry that you are struggling with mobility.
I do ensure my medical team are aware of all my symptoms, the severity and impact on my life and any changes.
The Blood Cancer UK support line is there for you on 0808 2080 888
You have a lot going on emotionally, physically, medically and practically.
Be ever so kind to yourself and please do keep posting
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Hi Erica, Thank you for replying. I’m reaching out on here as I so want to connect with others with Myeloma and hear some hope that things will get better. This is an absolute nightmare for me, as I was such a a fit an active person, and now I feel trapped. I have lots of emotions about it, anger, sadness, frustration
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Hi @MariaWatson I do hope someone Myeloma will respond to you.
I certainly had a lot of very similar emotions to you at diagnosis.
I often say that my emotions and thoughts have been on high alert since my diagnosis some are conflicting, I remember having the ‘why me’s’, ‘what if’s’ etc
Personally I have found that sometimes it does not matter which condition we have some of us share the same thoughts, feelings and practicalities.
I could only walk a very short distance at diagnosis, I have slowly built my walking up to several miles now. I am now fitter than I have ever been in my life.
I did have some talking therapy which I very personally found helped me.
Really look after yourself and I really do hope that your mobility and pain can be improved.
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Hi Bitsy, thats reassuring to read that you did start to feel better. I’m due for the stem cell transplant at the end of my 16 week treatment schedule, which I am only onto my 3rd treatment this week with zero improvement so far in my mobility. Currently I am using two walking poles when my partner takes me to the sports field to spend time with the dogs. At home I am moving around like a sloth, it’s very frustrating and hard work. What pain issues did you have as mine seem to be more in the ribs.
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Hi @MariaWatson it is worth checking what you should be doing, eating and drinking with your medical team and make sure that nothing advised conflicts with any other conditions you might have.
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Hi @MariaWatson
I have been living with myeloma for 7 years
I have had two transplants over that time and two different chemo regimes
I can’t say I’m pain free I had a fracture in my back and pelvis at diagnosis along with various lesions
You are the start of your journey
Initially it seems the pain is worse at beginning of treatment
Any new symptoms inform your team don’t wait or sit on it. They are used to us.
You can also ask your consultant for some counselling to make sense of what’s happening
I presume you are having DVTD?
The steroids can give you high and pain free days then it feels like the pain has come back with a vengeance .
Have you been offered Zometa? It’s a bone strengthening infusion which does help with pain although afterwards the pain feels heightened but will reduced as the week goes on.
You can ask for a referral to palliative care for pain relief and help you live comfortably
Palliative care is there for living with cancer
I found them very helpful at my diagnosis
I had a fracture in my spine and pelvis and lesions (I have boney disese)
The chemo regime will make you feel more sluggish
Your cells are being destroyed good and bad and rebuilding and just as they get there it’s time for next treatment
This will result in tiredness your immunity will be waining so make sure your wash hands and keep away from illnesses a bit like Covid protocol
I felt better after my first transplant it took a few months and I returned to my part time work
I was still on painkillers but lower dose and I was having physiotherapy for a couple of years
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I had an intravenous bone treatment on my first day. I’m due them every 4wks. Yes it is very early days, I got worse and worse and worse with the usual fob off from GP with pain killers. It was only through paying for my own MRI and Rheumatologist that I got fast tracked onto the cancer screening, so i suffered a lot pre diagnosis. I just want to hear other stories of being in the dark tunnel and finally seeing some light and feeling better. Im tracking my drinking: 1500ml plus green and nettle teas. I read that Green Tea helps to heal DNA. x
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If your having veicade you shouldn’t be drinking green tea
Ask your consultant or CNS for a referral to palliative care rather than GP for pain relief
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Thank you all for contributing to this thread, sharing your personal experiences and supporting each other.
Could I please ask that you don’t recommend things like fluid amounts, supplements or medications to others - what might be right for one person may be harmful to someone else. We would always advise everyone speak to their specialist nurse, Haematologist or GP for specific advice on things like fluid intake, supplements and medications. They know the patient best and have to consider; past medical history, blood counts (kidney, liver and cardiac bloods) other drug interactions, allergies, future treatment options etc.
It’s fine to state what you do for your own health, but suggesting others do the same could be considered ‘medical advice’ which goes against our Terms of Use - Guidelines
Under point 7 " - * Please do not post anything that could be interpreted as medical advice, including but not limited to linking to unverified research studies. This forum is not a substitute for the advice of an individual’s healthcare team, and information posted within the forum should not be posed as such. "
If you are ever unsure if what you are writing in a thread is ‘allowed’ please do message us via the Forum messaging system, we’d be happy to help clarify things.
Thank you all for keeping the Forum a safe and welcoming place for everyone affected by Blood Cancer. 
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Thank you for that! Green tea is mentioned
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Hi Maria
Don’t lose hope that your pain will get better.
Someone in my local myeloma support group had to use a wheelchair during the first 6 months after diagnosis, but went on to dig an allotment and to lead a walking group during the last 19 years.
Unfortunately it is common for people with myeloma to seek medical help on numerous occasions prior to diagnosis , and like you to only be diagnosed after privately arranging scans.
You are very likely to feel much better after induction treatment (& stem cell transplant if this is advised).
Although I did not have your level of pain at diagnosis, I definitely felt (& feel) better after recovering from Stem cell transplant, and continue to do so 6 years later , despite a relapse last year.
It may help you to join a local support group, there is a list of groups on the Myeloma UK website.
Best wishes, Jane.
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Hi @MariaWatson
Welcome to our forum and I’m so glad you have found us. Following Maple’s supportive message, I just wanted to share our link to peer support groups in case this is of interest to you: Peer Support | Blood Cancer UK If you go to the support groups section, you’ll find out more about the Myeloma UK groups. It’s great to hear that you have had positive experiences with these groups, Maple.
Also, just in case it is helpful - we have some positive stories of people living with myeloma on our website too - not the same as connecting with others, but sometimes useful to read through how others have coped. Here’s one on Coping with myeloma - how do you do it? | Blood Cancer UK and another by Edward, who shares about building back his fitness after his treatment Edward’s story | Blood Cancer UK Everyone is different, but I hope there’s something in here that may support you in how you’re feeling right now, which is so very understandable.
If you ever want to talk any of those feelings you mention through, please do also know that you can call our Support Services team: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care of yourself.
Kind regards,
Ali
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