Hi @Lynn1 great to hear from you again but sorry to hear about your symptoms.
Have you told your medical team or GP and seen if they can help?
I don’t know if anyone has suggested anything that might help on here.
How are you doing apart from this?
Look after yourself.
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Hi @Swara a great big welcome and I am sorry to hear of your recent diagnosis.
It is interesting because I think most people on our forum are saying that their restless leg symptoms came on after their diagnosis, but it appears that yours came on well before, unless I have it wrong.
I am a great one for always telling my haematologist all my symptoms as they need to know everything that is going on for me.
The main thing is to really look after yourself I found that my diagnosis was a great shock and brought up all sorts of thoughts, emotions and practicalities.
Please do keep posting as I look forward to hearing more about you.
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Quite right @Erica, my restless leg syndrome came on many years before my Chronic lymphocytic leukaemia (CLL) was diagnosed.
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Hi @Lynn1 yes it is, it can be difficult to describe the syndrome to anyone who doesn’t have it. The fact that it’s an overwhelming feeling to move your legs may seem odd but it’s something we sufferers have to deal with along with other medical problems.
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Hello @Lynn1, sorry you also suffer with restless legs. It’s horrible and used to drive me mad. However my GP prescribed a low dose of Ropinirole to take at bedtime which really helps. The downside is it gives me rather vivid dreams, but you could consider it? Sending warm wishes, Willow x
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Hi Mike get the same problem I have to get rid of the douvet, the need to find a cold spot in the bed, furthermore my big toes start throbbing and one of them I get pins and needles. I have Large granular lymphocytic leukaemia (LGLL)
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Hi @PeterM welcome to the forum, I haven’t used a duvet for many years now, all I use is the duvet cover and even that’s too much. I think I mentioned that I take a couple of Tramadol when I feel the signs of an attack coming on, this is on prescription for my peripheral neuropathy. Iron supplement tablets have helped in the past.
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Hi @PeterM I am so glad that you have found us, welcome, and I think one of the advantages to our forum is realising that you are not alone or the only one with certain symptoms, sometimes we all seem to have different blood cancers too.
If you would like to speak to someone the Blood Cancer UK support line is there on 0808 2080 888.
I look forward to hearing more about you and take lots of care of yourself
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@MikeW That sounds exactly like Ms (Multiple Sclerosis) Tremor, when bad I take Clonazepam and it helps me sleep. Usually brought on in extreme weather or certain surfaces eg metal from sissors.