I've been going through a rough patch recently with fatigue and its really been getting me down, as it is having a knock on effect on my daily life. I'm usually a positive and easy going person but this is really testing me this time. I have decided to prescribe myself complete bed rest for a couple of days just to ground myself and hopefully regain some energy. My question is the ITCH. I have developed a really terrible itch but only at the top of my arms.......... It comes on in the evening and turns into a nightmare when I am in bed and gets worse if I turn on my side. Has anyone else experienced this? I have had the usual MPN itch in the past and taken antihistamines but I am baffled by just the top of my arms? (I would suspect the itch isn't helping the fatigue because my quality of sleep is poor). My counts in October were good and under control, I take Hydroxy 1000mg daily and aspirin. I did start taking Vit B complex , B6 and B12 for the fatigue, which I have stopped since yesterday just in case it might be that................
Fatigue and Itching: I've been going through a... - MPN Voice
Fatigue and Itching
The fatigue we can have is wearing on the spirit. Some have found that getting exercise a help. Keeping well hydrated is another thought. I am sorry you are feeling so down. My experience has been that my body learned to cope with constant tiredness after a while. I wonder what your HGB is.
As for the itching you seem to know about and are able to cope with the usual pruritis. This itching on the arms only is new to me. Let us know if stopping the vitamins helps. I hope you are soon in a better place.
Thank you for your reply JSKly it was very kind and understanding. I work full time so exercise takes a back seat I'm afraid, so truth be known there's probably more I could do to help myself. My Hgb is the lowest its ever been 12.6 - so doubt its that.
I'll see how I go off the vitamins. I don't feel quite as bad this evening, I feel really calm and rested, the bed rest seems to be doing the trick. Best Wishes
Good you are feeling a bit better. I've had PV since 1999 and guess over the years I gradually got used to the fatigue. I'm in a ruxolitinib trial at the moment and although it worked a treat on the platelets it belted my reds. HGB got down to 8. I really felt it then. It is gradually coming up and I am at 10.+ now. I am retired so don't have your battle of full-time work. Let us know how things go when you next have a blood test.
Improving by the day thanks JSKly, at least that horrid acute fatigue has lifted. The itching is subsiding too, or should I say enough that I can ignore it and not start the dreadful itch cycle. I have been for a blood test out of curiosity and won't be able to get the results until Monday as I only popped in Friday pm. (although I suspect they will be pretty stable). I am juicing and making pots of homemade broth (which I am sure Twinkley will be pleased to hear). Good to see you are on the Ruxolitinib, and your red cells are recovering. None of these meds are perfect, Hydroxy plays havoc with my counts normally. So you have had an MPN for 16 years, its a long time, but good, that you are still stable and that's very reassuring. I don't want to wish my life away but I am desperate to retire, I know working doesn't help at all and I get really stressed about it which doesn't help. Have a lovely weekend and take care.
Got my results back this morning and my platelets have jumped to 550 from 323. The hospital have been very supportive and are referring me to a fatigue clinic and also prescribed some sessions of Reflexology. I really don't want to have to increase the Hydroxy if I can help it. By the way the itch is back, rough night last night, so can't blame the B vitamins. Back to work today though, keep calm and carry on as they say. Thank you for all your support, it has been nice to have people to whinge to who understand.
Hi, the fatigue horrible I sympathise. As JSK says keeping hydrated and doing exercise is good. Getting out for a walk or meeting a pal for coffee helps my mood but when I'm really fatigued even that is an effort. I am still trying to find the balance between doing enough exercise but getting rest also. If I overdo I pay the price by wasting a day lying about not fit to do anything . Legs and arms feel like lead.
As for itch, I get concentrations in strange places like my arms only or legs or back and then sometimes multiple locations. Good hydration and moisturiser helps as well as keeping itchy areas cool in bed.
Every sympathy, take care Aime x😺
Thanks Aime appreciate your reply. The dratted fatigue I just wish there was a magic pill we could take to make it go away. When I get it really bad its like a veil over my face, and my energy is so low, I can hardly function. As I said to JSKly, I don't feel as tired this evening, so hopefully the worst has passed. Lets hope the itch subsides tonight, it would be great if it eased off. Best wishes.
Hi
I can't add much to what others have already said, I can only extend my sympathy and say hope you are feeling better soon. It is funny how we can go through this tough patches even when our platelets / blood counts are under control. I have been exhausted the last few weeks and some days it has been hard to get through the working day. I work full time too and that and tube travel finishes me off some days!
Still you are doing the right things, some day we do just need a duvet day to recharge our batteries, before we get up and at it again. Take care and hope you'd feel better soon. Lizx
Ps I do getting itching periodically even when platelets under control, not sure why, it also seems to be localised often on my lower back or shins! No telling why, I just try and drink plenty fluids and moisturise well etc. Lucky not suffering with it at moment though.
Thanks Liz - I know, I would understand it too if my counts were playing up. I rarely take time off work if I can help it as I hate to let people down, but this time I knew it wasn't gonna go away without a little help. I went in Monday fatigued and just knew I should have stayed at home - it was the longest day................ I was determined to take complete bed rest, never done it before, but hopefully its done the trick. Best wishes.
The advice I was given for pruritis was to lower heat levels in the shower, down to tepid, and to pat myself - absolutely not rub - dry afterwards. That seems to have calmed things down, to the extent that I can now shower with comfortably warmer water. Over a period of months it would seem that the potential for irritation has now dropped. At the same time, my platelets are, for the first time in years, under proper control with a slightly stronger dose of HU for my PV. So maybe that has helped too.
No guarantee that things will stay the same, of course - I'm going though a wave of mild fatigue again. Good luck!
Agree Robin Valk,tepid water and carefully patting dry does help the itching,think I am lucky that mine doesn't last too long,feels more like burning pins & needles.
Loads of good moisturiser for sensitive skin too,E 45 &psi liar,some people on here cannot cope at all with water,which must be so difficult.Above is meant to be 'similar'
Pad misbehaving.Best wishes.
Take an antihistamine for the itch it always worked for my husband.
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