Pain and pins and needles in fingers and toes. - CLL Support

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Pain and pins and needles in fingers and toes.

swiftbrook profile image
19 Replies

Diagnosed a year ago but traced back to 2009 I am on Watch and wait.

My Haematologist says that the abve syndrome is due to my Athritis in my spine but I am dubious, have any other members suffered in this way?

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swiftbrook profile image
swiftbrook
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19 Replies
sparkler profile image
sparkler

Hi Swiftbrook.

Sorry you are being troubled by this. It is true that arthritis can cause these symptoms, as inflammation and bone spurs can put pressure on nerves and pathways lead from different areas of the spine to fingers and toes. You should seek medical advice and I am not sure that the Haematologist is necessarily the best person to advise on this problem. Maybe a Neurologist, Orthopaedic Specialist or whoever you see about your arthritis. Perhaps your GP is the best person to begin with.

Good luck and hope you feel better soon.

sparkler x

swiftbrook profile image
swiftbrook

Thank you.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Might be nodes enlarged and pressing on nerves...spinal cord etc... certainly you can't let it continue without medical advice...

~chris

ygtgo profile image
ygtgo

Hi Swiftbrook

I am 54 and in my 8th year Watch and Wait.

I don't have Arthritis,but I do have a sensation that I wouldn't describe as pins and needles, but more like a tingling - ( did you ever put your tongue on a 9v battery when you were a kid ) - a sensation that I have primarily in my feet but at times ( especially when I am feeling fatigued or fighting infection, will spread up to cover my legs an even my hands /face ). This sensation is unknown to my Haematologist, or any of the GP's that I have seen - for the last 10 months I have been on tablets for neuropathy with mixed results. ( I tingle as I type - with a stubborn cold sore that wont budge .... ).

Start with your GP - although it may take a while till someone will listen - and if you do find an answer - let me know and I'll try it ......

swiftbrook profile image
swiftbrook in reply toygtgo

2 people have suggested B12, I will get some tommorow and will let you know how I get. I am away for a couple of weeks so dont hold your breath..

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toswiftbrook

You may not be able to process or uptake B12 from food or supplements. Have your levels checked first...

In my case my B12 can only be augmented by a monthly jab...makes a huge difference to me...well worth talking to your GP about...

swiftbrook profile image
swiftbrook in reply toCllcanada

Thanks,I will.

AdaYoung profile image
AdaYoung

I was diagnosed three years ago with CLL and am also at the watch and wait stage. I also suffer from tingling, numb feet and arms and hands that go numb when in bed. I believe this is associated from my back and neck. I recently unwent surgery to my spine to try and relieve the nerves trapped. The operation did not go according to plan and the sheath surrounding the spinal cord was torn with a leakage of spinal fluid. I am now left with increased back pain and my toes are even more painful. I would say if you are offered surgery I would think about what can go wrong before making your decision.

swiftbrook profile image
swiftbrook in reply toAdaYoung

I am terribly sorry to hear of your predicament and I thank you for that information.

I sincerely hope it gets better, you could try praying.

Leck52 profile image
Leck52

Have you checked your vitamin B12 levels, as low levels can cause tingling of the hands and feet.

swiftbrook profile image
swiftbrook

Thank you, I will try.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

I agree about having your B 12 checked. If you need supplementation pills should be sub lingual if your doctor doesn't recommend injections, and your levels should be checked to see if they are helping. In my case they made a difference, but I know several people who need b12 shots to get an effect.

I also have tingling in my arms and legs which result from degeneration in my neck and lower back, shown in an MRI. Physical therapy and getting a foam mattress cover for my bed have helped. I also use a foam pillow designed to position the spine and, if my neck is bad, wear a foam neck brace when I sleep.

Pat

swiftbrook profile image
swiftbrook

\\\\\\\thank you, I have just returned from two weeks on Formenterra and highly recommend the idyllic Hostal Casbah for all ailments.The B vitamins seemed to help too.

swiftbrook profile image
swiftbrook

I have found that the holiday/B vits have helped tremendously but I am not sure which has helped most. I do find that if I get stressed then the effects generally are worse but like another member I also get the symptons when I lay in bed, usualy turning over to the other side helps.I have modified my pillows which seem to help also.It is not bad enough to keep me awake but I have found my arms are weak and painfull in the mornings on sometimes. Hey ho, the sun is shining and I am glad to be alive. Bless you all.Anybody else in North Wales?

PaulaS profile image
PaulaSVolunteer in reply toswiftbrook

Glad to hear you had a good holiday on Formenterra, Swiftbrook. Sorry we don't live in North Wales, but often go there for holidays, and love that part of the world. We had a week in Beddgelert just before Easter, and had some fantastic hill walks in the snow. I'd be interested if you do start a group in North Wales...

Paula

swiftbrook profile image
swiftbrook

Thanks, I live on Anglesey but would be prepared to travel to a group. I went to the meeting in Liverpool which was fantastic and my wife enjoyed it too.I hope to hear from you again.

PaulaS profile image
PaulaSVolunteer in reply toswiftbrook

hi again, Swiftbrook. Hope you're keeping well. I just noticed your comment above (I think I missed it at the time). I wonder if you did ever find a group in North Wales?

swiftbrook profile image
swiftbrook in reply toPaulaS

No I did not find a group in North Wales, What part of the country are you in?

swiftbrook profile image
swiftbrook

Thank you for your late reply, in answer to your question.No I did not find a group in North Wales, what part of the U.K. are you in?

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