Pins and needles and tinnus

[Jody00]

Hi does anyone get a lot of pins needles in there feet quite a lot sometimes in hands but not has bad has my feet and ringing in there ears I did ring the doctors up but said pins and needles could be due to condition I've got so can the tinnus but I have still got a block up ear which there can't do much about it with covid19 and I have got arthritis in my feet and left knee quite few years and hip pain and back pain only found out got diagnosed with all these same time has my condition in March 2020 every since I turn over 41 years old got quite a lot of things going on I get like click cracking sounds in my legs when am walking starts worse at night times sometimes I don't like the sound and so often can hurt when crack get big and loud unless that's just normal for meXx

[socrates_8]

Hey there Jody...

It's not unusual to have 'Pins & Needles' w/ ET... (BTW ~ are you also taking Enteric-coated 100mg daily Aspirin?) All Aspirin should be 'Enteric-coated' as that helps to protect the stomach wall from harsh acids etc). The Aspirin is what helps to keep our circulation flowing & not clotting up etc...

I had them quite a lot in the beginning, but these days I am Post ET / MF...

I do not wish to make you apprehensive at all Jody... However, I have also had two (2) TIAs, (Transient Ischemic Attacks ~ minor brain strokes).

Hence, for me today, (now almost Five (5) years since diagnosis), whenever I have a bout of Tinnitus, I also try to learn where my Platelets are/were at at the time... (?)

They were very high after the first experience, (1.3Mish?) I believe...

Even today, my Platelets can still be very high very often, (currently around the 800s), however, I do NOT start to worry unless I know I am getting over the 1 Million mark etc...

Nevertheless, for me today, I read Tinnitus as a possible 'Red Flag' and continue to keep an eye on my Platelets etc...

Hope this helps a little...

Best wishes

Steve

[MadamCholet1]

I also have tinnitus. But I’m unsure if it’s more related to being in the military for over 15 years working around loud jets etc. But if I’m very tired, I do notice my tinnitus is a lot worse. As for the pins and needles/prickly skin sensation, I only get it when I get out of a bath. But it seems to be a common complaint amongst us all, as does the tinnitus.

[wiskie]

I've had ET for 10years now , I suffer with pins & needles in feet & hands. Tinnitus also seems to be a problem too & worse when platelets rise.

[Wyebird]

Hi I experienced pins and need he’s in feet once. I told my blood nurse. She said as it was a one off do nothing if it was on going then asprin would be doubled. So it is significant and your heamo must be informed.Good luck with that and all the other ailments you are suffering. It’s very difficult to distinguish what is MPN related. You are young too.

Xxxxx

[Mazcd Partner MPNVoice]

Hi Jody, sorry you are experiencing all of this, not very nice for you. I would suggest that you speak to your nurse specialist at the hospital for some advice. Best wishes, Maz

[Hidden]

Hello Jody sounds like your having a lot of health issues all at once and made worse by this global pandemic. I also experience tinnitus sounds that have changed over the pandemic.and like you only recently diagnose the ET it's so hard for everyone let alone those of us battling strange symptoms and side effects from medication. I send you best wishes and a virtual hug.Adieshanti.

[SRH55]

Hi Jody,

I’ve had ET for 10 years, I did have tinnitus before then, but it has definitely got worse over the past few months, I do wonder if it could be stress related! My playlet count is quite good at the moment. It’s been interesting to read other people’s comments.

I don’t get pins & needles in my feet, but they do get very hot, specially when I’m in bed, I don’t know if other people have that problem?

Stay safe everyone.

[Dovme]

Hi Jody - l also had some pins and needles especially when my platelets were high. It seems to be fairly common issue among us. Tinnitus is listed as a possible side effect to aspirin? But it could be stress or simple wax build up especially if you have blocked ears. I would do as others suggest maybe contact your doctor/ nurse see what they recommend- wish you best, hope you get it sorted

[IrishHiker]

I have tinnitus but also have otosclerosis in both my ears plus I need to wear hearing aids. I was not aware that tinnitus was also connected with ET. Faciating what one picks up on this site! Does anyone know why ET causes tinnitus? I always like to learn about pathophysiology (being a retired RN and all ). I rarely get the pins and needles. I had a brief episode of it about a month ago but not since and then, it was only in my fingers. Isn't life grand?!?Seriously...I'm just happy/grateful to be alive.

Cheers Jody <3

[hunter5582]

Paresthesia and tinnitus can have multiple causes, but both are known to be associated with MPNs. Sometimes symptoms will diminish with effective treatment. My paresthesia has almost disappeared with treatment for the PV, but not the tinnitus. However, there is an extensive history of hearing loss and tinnitus in my family including those who do not have a MPN. It may be unrelated to the MPN for me.

Regarding all the inflammatory issues (e.g. arthritis) - definitely related to the MPN. We are very prone to inflammatory conditions, I did find some things that really helped me with the osteoarthritis I have pretty much everywhere. Combination of diet, exercise, weight loss, Curcumin and a few other supplements. The Curcumin is what helps the most of all. Better than Ibuprofen, Meloxicam, or Lyrica. (you likely have seen me say that before)

Hope you find multiple sources of relief ASAP.

[Jody00]

Thankyou everyone for getting back to me, I rang my doctors up going to do some blood tests Monday morning just to check to see if my platelets have got any higher if not then going see if anything else is wrong but for now got to do some exercise for my back and hip pain and said to drink 2 litres of water a day because that can help with bloods to stop getting thicker but I drink about 4 pints a day most of the time .I do take eltric Coated aspirin has the other one upset my stomach too much,these ones do abit but not has much can just about cope .Xxx

[vanlady]

Hi Everyone , I"ve had Tinnitus for about a week now, when i lay down ,or get up is the worse,and Frightening experience.I have PV .My Consultant has retired,and nobody has taken over his position yet ,so the next time i get to speak to a Doctor is a Telephone call in February,my own GP will not understand , For 2 years he said my condition was because i was over weight ,if i lost weight it would go away. The Nurse who does my Venesection"s has given me a phone number for Clinical Nurses . With the Pandemic ,and isolation ,Thank goodness for my Nurse who takes my blood or i would of been in limbo

[Jody00]

Hi got my results back from GP today no more concerns over my bloods so take it that mean my platelets still on 598,so looks like the cause of it could arthritis which a probley think so il have to ring doctors cos am still getting pins and needles and feel like swollen underneath my feet, I've been diagnosed with gout in my left feet,arthritis, back pain,avascular necrosis of left knee, osteoporosis of left foot and hip and my condition essential thrombocytopenia which diagnosed March 2020 had quite few years when a found out this year tends to get worse in winter,still get tinnitus quite alot could still be due if my ear still bit block has been using oil olive ear drops advise by doctors few weeks ago,my next appointment and bloods with haematology is just after new year so think with pin needles soreness hip pain could be due to arthritis but not sure tell speak with doctors again on phoneXxx

[Jody00]

Sorry spelled my condition wrong above comment meant to put jak-2 mutated positive essential thrombocythaemia thanksXxx

[Melanie66]

Hello Jody ... Yes the same as me and many others with an Mpn ... But must say have felt such improvement since changing diet .. All of the bone pain and pins /needles in hands and feet plus other painful symptoms have really reduced just in one week of diet change ... I used this diet years ago & felt such improvement then...but over time have come away from anti- inflammatory diet back to eating food with no real goodness ..just forgot somehow ...anyway back on track now ..This way of eating has helped so much ... You can find diet advice/anti inflammatory diet on our site ...Lucy Geering ...plus other advice ...what food to eat ..what food to avoid plus other helpful advice from so many of our fellow sufferers on this site .. wishing you well with whatever you decide to do ...Lainie x

[Jody00]

Thankyou very much that's help alot has I lost track 2 weeks ago on my diet so could be that why my pains so on getting worser couldn't sleep well last night due to hip pains worser on a night now when a turn on my right side of my hip felt like a was laying on a tone of bricks wasn't nice has made me have a un sleep full night plus I was going dizzy for fews seconds like a was going go over so had to hold on I've had virgto last year really bad but this time just lastest a,few seconds could be due with tinnitus got with my tight ear still block I think it is been using oil olive drops il do for bit longer to see any change just waiting on doctors ringing me today to see what say about my hips. Thankyou very much going back on my diet again this week a just need to try stick to eating diets foods again Xxxx

[Angelinagaffer]

Yes, I get it all, it is to do with the Mpn, I have PV and ET. I stretch my feet and hands, it seems to help , I also get burning sensation and numbness, again I move the toes and fingers. With the ringing in the ears , not a lot you can do about that but I have had it for so long, it fades into the background on most days. maybe try cannabis oil for your joints.Best wishes

Angelina

[Jody00]

Yes doctors said could be due too high platelets count and arthritis so on whats going on with my bones and joints and give me some exercises to do with my feet knees back and back of my neck hips just have to get on with it hopefully exercises healthy diet and take paracetamols for when it gets worse thats odd days here and there but said if my hip pains does gets worser in next week then will do a hip scan but am sure its arthritis same has my knees and feet but I do get alot of pins and needles in my feet but sure these symptoms am getting is due to our condition, my next appointment for my bloods and to speak with haematology is after new year see where we at but a do know for now there been up and down and up not keep going up and up at the moment.thankyou for your feeds backs Xxx

[Jody00]

Well my doctors has text me today to say there got some advise from haematology for me to ring doctors for an appointment so must be due to the symptoms I've got probley going to say due to condition I've got and what ever advise there can tell me from haematology so that's good then and had my,I had a ECG done over 2 weeks ago doctors has text me again today to ring for a routine appointment to discuss my ECG also made appointment next week so well find out if any new news a need to know about if not then could be just updated me then things are okays .thankyou Xxx