Does anyone else get excruciating pain at end of... - MPN Voice
Does anyone else get excruciating pain at end of their fingers and sometimes v painful whole hand....connected to ET (Jak 2 pos(? Tinkerbell
Yes , I have had the same , not all the time . I have E.T , jak 2 negative .
Sympathetic but thankful that someone else has experienced this too.
I sometimes get pain in my toes. I take a few advil, and the pain goes away.
Thank you for reply and wish you the best; nothing seems to help my fingers, at the moment! Tinkerbell
Hi, quite often sudden pain in toes and fingers - every sympathy. I have PV Jak 2 negative. Best wishes Aime
Thank you for reply...it does help to know others in same boat. Wishing you well, Tinkerbell
I was putting it down to rather severe Raynaud's. It sometimes feels like I have slammed my fingers in a car door. I'm waiting to find out if my ailments (I feel like such a phoney because I consider myself to be otherwise quite hale and hearty!) are haematological or vascular. I'm guessing one won't help the other! (Also jak2 +)
If you do find out, please let me know....you have described it so vividly and know exactly those feelings. Friend with Reynauds has pure white fingers, mine don't go white like hers and told by a haematologist likely to be blood in tiny arteries not 'getting through'. So reassuring to know you the same but do send my sympathies all the same. Best regards, Tinkerbell
From my reading those 'phantom pains' as I call them, can come in any of our extremities. Mine are mainly in my feet, but now occasionally in my hands. They are short, but sharp, and can make me jump. I also wonder how many others get these.
Agree re 'phantom pains' and that is exactly how I would describe them too or 'stabbing pains'. Also make me jump. Does help to know others like me, but only sorry you have to have them too. Best wishes, Tinkerbell
Hmm Short sharp, yes i get those in my fingers, not often say once every 4 or 5 days comes on then gone in 30 seconds. Takes you by surprise for sure! (PV JAK+)
Thank you for this....mine can last on and off day and night, but occasionally less, but helps to know others suffering likewise, though have to add am feeling sorry for you all! Tinkerbell
I get them quite regularly - in tops of fingers. They tend to be momentary but when they really hurt, I keep my hands warm by wearing gloves, especially in bed. Mwalimu
Yes, agree re gloves, but hadn't worn them at night. Good idea. Thank you. Tinkerbell
I plaster my hands in a thick layer of moisturiser and wear the gloves for as long as I can tolerate them in bed. I've had really dry skin this winter with an actual sore developing on one of my finger tips - quite disturbing really! I've also taken to bed socks as my feet can be like blocks of ice.
Good idea...looks as if our circulation isn't that great! Tinkerbell
Circulation definitely not great - feet like blocks of ice also, rest of me pouring with sweat sometimes. Interesting about Reynauds syndrome - I have a mild form as well as PV. Best wishes Aime
Sympathise re sweats, have masses every night! Interested re the Reynauds, but my fingers never go white, just shooting or throbbing pain. Really wish you the best. Tinkerbell
same syptum as you dicribe pain throbbing ,cold hand and foot.Worse time night. your right tinkerbell feel bad for you but also good to no its not in my head.
Hi Teenia, interesting you should reply today, as been excruciating...think due to intense cold. Sorry you also having these problems. If ever hear of solution, will put it on Forum. Best wishes, Tinkerbell13
Hi there,
I'm jak2 pos, and am getting what I believe is Raynauds increasingly badly. Over the past couple of years I find that the slightest bit of coldness makes the fingers of both hands go white. Yet to discuss this with GP/haem... My hands also get a horrendous burning feeling when I'm gardening/decorating for any length of time. Not sure whether this is more to do with carpal tunnel syndrome? Again I haven't bothered the docs with this either... I seem to have so many weird and whacky symptoms, it's almost embarrassing! 
xx
Hi Loubielou, Nice friendly haematologist referring me to vascular surgeon as says could be linked, and maybe tiny blood vessels blocked due to ET and not letting blood through. Mine have got worse last two years, and also like you, when gardening or slightest coldness (and strangely enough, after eating chocolate or having alcohol, have discovered, but former may be due to what chemicals are used to spray cocoa beans, sadly. Last night, throbbing pain in fingers really kept me awake a lot and painkillers don't affect it. Thank you for replying. May have to be offline for a few days but do reply as and when you can. Also I find it embarrassing re odd symptoms, so maybe we can have helpful link!! Like your smiley and xxs and send some back to you! Tinkerbell xx
Hello Tinkerbell, so sorry to hear that your pain is affecting your sleep. Thank you for the info about referral to a vascular specialist, I hope they are able to find a way to help you. Please keep us posted. I am due to attend my first clinic at Guys next week so will add this to my list of queries!! Isn't this forum amazing? I recently asked a question about HRT and ET. Many people replied and were so helpful, without this I would not have been able to have a meaningful discussion with my GP. Take care xx
Do hope you get on well at Guys and hopefully see the remarkable and special Dr Claire Harrison too? Do keep us posted how you get on. Very very best regards, T xx (at present am on just aspirin and platelets mid 850's, so a bit high - wonder about you, too)
Hello again, well my counts bob around to say the least. My last count was in the 650's which for me is the highest they tend to get up to. I was diagnosed nearly 5 years ago and so far only needed aspirin - long may that last! When were you diagnosed, what have your counts been like? Lou x
Hi again, sorry re delay, but been offline. My count was last in 850's and went to 9, previous two months. Been diagnosed about 3 years. Tried HU for 2 weeks but such bad side effects, took me off and like you just on aspirin. Am 73 and mother had PV, so apparently that puts my risk levels up. Great to be in touch and remembering your Guys visit soon. Tinkerbell x
you know it's only now I have been reading everything on these pages that I realise in the 10 or so months since diagnosis I have never been told my counts or what they mean. Actually, should not say never as I was told one count was 17.7 but not sure what that was except I was told anything above 16 is abnormal. What counts and readings should I be aware of when I next see haemo? Feel such a numbskull not knowing anything, just shows how informed I am by my haemo team?????
Hi Tinks, not in hands but in feet. Burning, tingling sensation and when I walk it feels like I am treading on an inch of sponge. Was sent to neurologist by GP before I was diagnosed with PV and the neuro couldn't find what was wrong. Nerve conduction tests were normal so a lot of head scratching but nobody twigged about possible MPN. I was sure everyone thought I was making it up.
Yes, also had these nerve conduction tests, all showing nothing, but haematologist refers to us with this pain as having erythomalgia (except I can't spell it!!). You sound as if you really have a lot to cope with, one way and another, and well done being so cheerful and upbeat! Best wishes, Tinkerbell13
awwww thanks Tinks. I have had breast cancer and PV but I still think I am a very lucky person considering what some other people have or are going through. Hubby thinks i'm nuts because I consider myself lucky but I am sure a lot of people on here will know what I mean.
Hubby sounds a really good guy and sure he appreciates his brave gal! Tinkerbell13
