Hi all. I’ve had a diagnosis of Polycythaemia vera (PV) and of late suffered from restless legs so much worse than normal, tingly hands and as a result lack of sleep. It feels like a vicious circle. Has anyone had any similar symptoms. Magnesium is said to help but I’ve discovered I can’t take it with blood thinners.
Hi @Sam157 welcome to our forum and I hope someone will be able to share their experiences with you.
What I do know is anything that affects my sleep is a great big problem to me and everything seems exacerbated in the hot weather we have been experiencing here and at night.
If your would like to speak to someone the Blood Cancer UK support line is there for you and I will copy your post to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK @LauranBloodCancerUK and @Heidi_BloodCancerUK in case they can help.
As you show you are a special unique person as you are on blood thinners as well…
Look after yourself and I look forward to hearing more about you
Hi and welcome to the forum…
I’ve been diagnosed with Polycythaemia vera (PV) almost two years and in the prior months and to this day I get throbbing pain in my feet like someone is grabbing them and it’s ironic they only way of relieving this pain is to grab and squeeze them. I also get a tingling feeling in my fingers notably my little finger but I think that’s often because I rest the base of my phone on it whenever I’m on it. I’ve reported these issues with my gp and Haemo team and to be honest they kinda dismissed it and offered pain relief or take some when things become uncomfortable. I think it’s something we are susceptible too and it’s most likely to do with circulation and maybe doing some mild exercises on those areas (though when they are a nuisance the last thing you want to do is exercise).
My dad has diabetes and we bought him a retivive vibration circulation plate (bit pricey) but he and myself find it helps.
My sleep is very hit and miss and always disrupts my day and how I’m feeling. Falling asleep is not a problem as I have a set routine but staying asleep has been an issue for a long time.
Keep us posted with both how you’re getting on or any resolutions or advice
Just realised I offered no advice to your problem….
I asked my gp and haematologist regarding sleep and though they are very reluctant to do this they can prescribe some sleeping pills. I personally only used these to regulate and get into a sleep pattern and the first time you use them they can ko you make you drowsy the next day even on a low dose. With regular use my body became savvy and they stopped working so now I use it in extreme emergencies like when I’ve napped late and need to sleep for work next day or my mind is not switching off.
I sleep roughly at same time now, and sleep with talk radio in background. Sounds crazy but it helps so much.
I’ve found my sleep quality has improved muchly by keeping myself busy in day and not napping as much which has been tough in heat.
They are so many different things that work and don’t work for people and I guess it’s trial and error to finding one that works for you. But don’t give up and more importantly be kind to yourself… you’re not alone in this issue or this diagnosis and everyone here is happy to help and lend an ear and voice
Hi @Sam157 a really big welcome to our forum & thank you for sharing your own experiences.
I am sorry to hear that you are some what tormented by your worsening symptoms. May i ask, Sam, have you been able to highlight this to your haematology team at all?
If not we would encourage you to get in touch with them and relay how you have been feeling and for how long.
It can be helpful to keep a diary to show the extend of your symptoms & help facilitate a conversation with your consultant. This would also be appropriate to discuss with a nurse specialist under your haematology team if you the contact numbers for such?
Often there can be a number of causes of worsening altered sensation however we also want to ensure that you have been properly checked and that your team are aware of any changes big or small in your Polycythaemia vera (PV) and can treat your symptoms accordingly.
Should you wish to talk to our team regarding this, please know that a call can also always be arranged Sam.
Do Take Care, Lauran
Thank you taking the time to reply. I have got a vibration board which does help. I’m hoping once the weather cools down maybe it will be better. I thought about talking to the GP but wasn’t sure they would be much help. I do find myself trying to keep busy in the hope of wearing myself out some days! It’s early days for me so not sure what’s Polycythaemia vera (PV) and what is just completely unrelated!
I’ve had very little conversation with consultant. Nothing since diagnosis other than when I went for bone marrow biopsy 8 weeks ago. I’m waiting for a conversation about those results as have no idea what to expect. Is there a further diagnosis that could come?
That’s a good idea about a diary. Will do that as I don’t if I’m being paranoid or RLS and insomnia is getting worse. Other days I can sleep all day!
I’m like that too @Sam157 and it’s coming up to 2 years. There really isn’t much info and Polycythaemia vera (PV) does seem to me a silent Illness whereby it feels like a label and any symptom that arises could be related but also be unrelated so you’re always feel in limbo. Not sure if this is the norm or whether I’m just lucky.
Happy to be a Polycythaemia vera (PV) buddy if you need any company on this journey feel free to get in contact anytime
Thanks @Rammie18. I’m hoping things will be a bit clearer in the next few weeks once I’ve spoken to the consultant. Very much in limbo at the moment.
Be good to understand more.
Hi @Sam157, thank you for sharing your experiences here, and I’m sorry to hear you’ve been struggling with your symptoms. I can see that you’ve been getting brilliant support and advice here already. I just thought I’d share our website information around Polycythaemia vera (PV) with you, just in case it’s helpful at all. These are our webpages - What is polycythaemia vera (PV) | Blood Cancer UK, and we do also have a booklet on MPNs, which includes Polycythaemia vera (PV)- Myeloproliferative neoplasms (MPN) booklet | Blood Cancer UK Shop. Do remember that if you’ve got concerns, you don’t have to wait for your next appointment- you may be able to speak to your team (e.g., your CNS) over the phone ahead of time to air your worries. As has been mentioned, our Support Team are also here for you if you’d like to talk anything through at all (0808 2080 888).
I am sorry to hear this…Insomnia is such a horrible thing to cope with & any additional stress will certainly not be helping. Those days of full sleep will be so important but i appreciate finding a better balance would likely help.
On the basis of timelines you have mentioned, it would be good to follow up or indeed chase up when your next appointment may be.
We understand that Bone marrow results can take up to & around 8 weeks before being reported back to patients so as you are closing in on that timeline, it might be possible to ask your consultants secretary for an approximate time on when to next expect another appointment. This will also give you the opportunity to raise your concerns about your tingling sensation and hopefully have a space to gain some clarity and have an open discussion with your team, which can be so vital so you can understand everything more and feel more empowered in your own diagnosis.
Should you want to talk anything through with us too Sam please do know we can always arrange a call at any point.
Take Care, Lauran
Hi @Sam157 I have been thinking of you, how are you doing?
Look after yourself
To all Polycythaemia vera (PV) sufferers,
I was diagnosed first with ET and soon afterwards and after starting oral chemo, with Polycythaemia vera (PV).
That was just over a year ago.
I have been suffering with HORRENDUS stinging burning itching on my legs and arms. It is not so much the intensity (which is unbearable) but the length of the torment. It can go on all day. It makes me cry aloud, there is no contort… I have tried many different antihistamines , but none of them touch it!
My allocated nurse is very rarely available and when I talk to her, my symptoms are dismissed.
I have been advised by a dermatologist to try Phototherapy that “may” help with the symptoms. Unfortunately that comes with many other risks, such as skin cancer (which is in my family) and there is no guaranty that it woud get rid of my itching.
I am desperate and wondering if it is worthy to take all this medication and have venesections and noone can help me to aliviate this torment.
Thank you for listening and I am sorry I sound so depressed, but I have lost all hope of living a ‘near normal life’
Hi @oleconchi this really does sound horrendous and depressing.
I will copy your post to the Blood Cancer UK nurse advisors @LauranBloodCancerUK @GemmaBloodCancerUK and @Heidi_BloodCancerUK to see if they can help.
Perhaps keep on at anyone on your medical team at the hospital or GP surgery and really stress the severity and how it is impacting on your life and mental wellbeing.
Be kind to yourself.
Hi Erica. I’m a bit up and down but the weather cooling I think has helped. Sleep is still a bit disturbed. Once I can get to sleep great but still struggling with insomnia at times and the restless legs and tingling hands are still the main problem. I have no appointments till early November so feeling like I should just get on with it.
Hi. I’ve recently tried antihistamines for the sensations in my hands and arms. A slight help but still suffering. I’m still hoping for it to improve as the weather cools and can’t offer any suggestions but you’re not alone. I hope you get some relief soon.
It’s great hearing from you but wish it was in better circumstances.
Yes I’d say the itching is unbearable at times. My belly gets really itchy as too my arms back and legs when I’ve had a shower.
I too have been prescribed all kinds of antihistamines and creams to ease the itching… to no avail but Ive resorted to not having a shower everyday instead opting for flannel washes in between shower days and I take cetirizine hydrochloride (which I get a six month supply from Amazon around £4) one as soon as I wake and one before bed everyday and that’s massively helped easing my discomfort. I know isn’t guaranteed to work for everyone but whether it’s medically or psychologically helping I’ve improved nonetheless.
Continue to experiment and speak to your medical team or other people.
Fingers crossed you find something.
Having low iron also causes itching but this is part and parcel of having Polycythaemia vera (PV) and it doesn’t get much empathy from medical teams as it’s not high on their priority list and is counterproductive to your haematocrit levels
Keep posting so it feels like a less lonely journey
Hi @Sam157 Perhaps still contact your medical team, there should be more to life than ‘just getting on with it’ when it is affecting you so severely.
Thank you for taking the time to write this, and I’m so sorry to hear you’ve been going through such a difficult time with your symptoms. It really is so understandable to be feeling how you are in light of this, I can only imagine how troublesome this burning and itching must be for you. Would you find it helpful to talk this over? You are very welcome to call our support line if so (0808 2080 888).
As others have said, I think it’s so important to keep reaching out to talk about this, and to emphasise how hard you’re finding this to your medical team. May I ask if you have any upcoming appointments with them? Is your GP supportive?
We are thinking of you.
Dear @oleconchi, I am so very sorry to hear you are suffering so much. May I ask whether you have had a recent conversation with your Haematology Consultant about the severe nature of your symptoms? This is particularly important as from your post you are increasingly struggling with this.
There is some information from our colleagues at MPN voice here: Itchy skin – MPN Voice, it does give examples of clinical advice and patient experiences.
As @TanyaBloodCancerUK mentioned, please do give us a call if you would like to talk things through.