advice please

[pinkyandperky]

Morning every one hope your all happy and trying to stay positive.

Do any of you ever get dreadful pins and needles at night in your arms and legs?I have been struggling with this for a long time now sometimes my arms are so numb I don't even know they belong to me. I had a telephone consultation with my lovely Haematologist. He did not feel it was a typical symptom of aps from his other patients with this disease. At the moment I am not on any medication except Ferrous Sulfate (my SF levels were 6 at christmas). I am hoping to start on hydroxychloroquine as soon as my SF levels are high enough.

What do you take for the pins and needles?

Also he has diagnosed me with a platelet disorder called low von willebrand factor. Does any one else have this alongside their APS?

My hb is normal and my Sf levels have gone up to 18.

thanks in advance

[MaryF Administrator]

Hi, both my daughter and son had this, and myself, alongside our positive test results for Hughes Syndrome/APS, we also had low B12, which despite oral supplements, continued to be a problem, since we had injections, properly managed by GP and specialist this has improved, it is very important to make sure that a) your Hughes Syndrome;APS is properly managed, b) that any deficiencies are picked up, including low folate, B12, Ferritin, D and poor thryoid function. pernicious-anaemia-society.... It is very important that you don't start self supplementing as it can really have an effect on the blood tests. MaryF

[pinkyandperky in reply to MaryF]

The link you sent to me about pernicious anaemia had lots of similar symptoms to me. Interesting, I have no idea if I am b12 deficient. I know that I am just so tired all the time.

Thank you for the advice and reassurance. xx

[Jenkine]

I do get a lot of pins and needles in hands and feet.. I can wake up with what I call dead arms virtually impossible to move for a couple of mins...just make sure I do stretches on keep my fingers and feet moving..I take warfarin hydroxychloroquine and lanzoprazole.

[KellyInTexas Administrator]

I do have this symptom from time to time, but it’s exclusively associated with a low INR.

I would say- chart your INR and see what correlation there is to symptoms. Is there a lag time- a pattern of a few day later after a dip in INR? Mine is that day- others can experience a bit of a delay.

It will also involve neurological symptoms as well at the same time- with tingling lips and face and migraine, nausea and sometimes vomiting and diarrhea.

I do not have VWD that I am aware of, and I’ve been worked up for the full coag panels as well as all genetic heme disorders.

Mary is very good with suggestion of thyroid and minerals/ vitamins.

[Hughes-Comrade in reply to KellyInTexas]

I get pins and needles feeling as well as numbness in face and lips. Interesting that now this has been mentioned I haven’t had numbness in face, jaw and lip lately. I’ll have to think this out and investigate it. I have no clue if there is a connection, but I started taking a vit. B complex, Liposoma vit b and zinc as well as liposoma vit c.

[HollyHeski Administrator]

Hi, try checking your bloods as Mary as suggested, and also keeping tabs on your INR as per Kelly.

My numbness and pins & needles is only in my arms, especially at night - mine relates to stenosis in sub clavians and thoracic outlet syndrome.

[pinkyandperky]

Thank you for your reply. I have not been on warfarin since April 2014. Which was a six months course of warfarin due to a dvt in my left groin whilst i was pregnant with my smallest. I was on heparin injections until they had to rush her out at 29 weeks to save her life. Then I was switched to warfarin. Once the warfarin was stoped i was tested for aps but it was negative but now it is positive. The only medication I am on is iron tablets. I have no way to test my INR.

[Fra22-57]

I get them mainly at night in my left hand n arm.Thinking I was going to get heart attack but it wasnt thank goodness. I always fet them in my feet when walking n it's so painful there.I mentioned it to my rheumatologist who said it was my fibromyalgia

[MLNC]

I did, very regularly, until I saw a physio who help with realigning my spine and giving me exercises to improve muscle strength.

[KerryA]

There can be many causes of pins and needles. If it's intermittent, it could be related to the position your back and neck and shoulders are in especially if it's just at night. If it happens at others times, had a look at your posture and the seats you sit in including the car. There are alsorts of other conditions that can cause this eg. Carpal tunnel, neuro prblems, poorly controlled diabetes, etc. Keep a diary when it happens and what you were doing and ask for referral to a physio. My colleagues are good at diagnosis as well as treatment. Best wishes,Kerry