Pins and needles

[Suffering]

Does anybody with ME or cfs whatever you wanna call it, have pins and needles in their feet? Or anywhere else? Is this one of the symptoms of it or not? Is it actual nerve damage or reversible?

 

[TigerLilea]

No, I don't have pins and needles and I haven't heard of it being a common symptom of CFS/ME. It could be nerve damage, malnutrition, a vitamin deficiency, diabetes, a herniated disc, one of many diseases/conditions, vasculitis, etc. As to whether it is reversible or not depends on what is causing it.

 

[Old Bones]

Does anybody with ME or cfs whatever you wanna call it, have pins and needles in their feet? Is it actual nerve damage or reversible?

@Suffering I do, although the discomfort in my feet didn't start until a few months before my rheumatoid arthritis diagnosis -- 20 years after the onset of ME and FM. I've recently been diagnosed with small fiber peripheral neuropathy. Apart from suggesting she prescribe Lyrica (which I can't take due to severe side effects at the lowest dose), my internal medicine specialist had nothing to offer.

Here are a couple of articles you might find interesting:

https://www.verywell.com/neuropathy-in-fibromyalgia-cfs-3973033

http://www.mdedge.com/ccjm/article/95083/diabetes/small-fiber-neuropathy-burning-problem

I'm not aware that the condition is reversible. The advice is to treat the underlying cause to slow the progression. Unfortunately, in the case of ME, I'm not sure how one would do that.

When my feet are particularly numb, burning, stinging, and/or tingling, I find using hot packs inside heavy socks helps -- but only at home, of course, when not wearing shoes.

 

[Dechi]

I do have pins and needles occasionnally. Mostly in my feet and sometimes lower legs and hands.

 

[Sandman00747]

This was my first symptom when I relapsed after many, many years of remission. I took a warm bath and all of a sudden it felt like both feet were numb on the soles. And, when I got out of the bath the pins and needles feeling appeared in both feet and continues on to this day. And, incidentally since that time my feet have become incredibly sore on the soles along with the pins and needles feeling. It's really all one could ask for on top of jelly legs!

 

[viggster]

Yep, my neuropathies were so bad I was convinced I had MS. But nope, ME. Not sure what causes it but after 4.5 years it's mostly gone away (I still notice it from time to time). I think it's fairly common in ME.

 

[Hayley]

Yep in both my feet and very occasionally my hands but more often than not my feet

 

[charles shepherd]

This is a very common question to the MEA information and support services

So here are my standard brief notes on sensory symptoms, including paraesthesiae/'pins and needles' sensations:

1 There are a number of neurological symptoms involving sensation - loss of sensation, increased sensitivity to touch/pain, unusual sensations/paraesthesiae/'pins and needles' - that can occur in ME/CFS. However, it is sometimes very difficult to know whether they are part of ME/CFS, or a sign of another medical problem

2 Other causes of the above sensory symptoms include vitamin B12 deficiency, diabetes, hypothyroidism, MGUS/monoclonal gammopathy of unknown significance - which can cause numbness or tingling in the hands and feet and balance problems, Sjogren's syndrome. The list goes on…..

They can also occur in anxiety and when people overbreathe/hyperventilate.

Reliable source of more detailed information:

http://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/Causes.aspx

3 So it is important to properly investigate these symptoms, especially where they are more pronounced, or persistent, or have more unusual features

4 The investigation of sensory symptoms in ME/CFS is covered in more detail in the Investigation section of the MEA purple book:

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

If the problem continues, and your GP cannot provide a satisfactory explanation, I suggest you ask your GP if you could have a referral to a neurologist with an interest in ME/CFS - such as Dr Abhijit Chaudhuri at Queens Hospital, Romford, Essex (if you are in the UK)

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Suffering]

Yep, my neuropathies were so bad I was convinced I had MS. But nope, ME. Not sure what causes it but after 4.5 years it's mostly gone away (I still notice it from time to time). I think it's fairly common in ME.

wait a minute somebody just said it's not common in ME and you're saying the exact opposite. It can't be both can it?

 

[Snowdrop]

Viggster was giving you an opinion.

As time goes on the symptoms of ME can change -- some symptoms resolve and others crop up. Also, as time goes on people with ME tend to get further symptoms that may cluster into a different new illness usually of an autoimmune nature.

For example you may start with ME and then fit a diagnosis of ME + other illnesses.

This makes it more difficult to tease out what symptoms are properly attributed to ME and what might be distinctly diagnosed as an additional condition. When it comes to ME answers are not clear cut and so much is not yet understood.

You will continue to get a variety of opinions on any topic. In the end, whether it's common or not is academic. ME is defined by it's core features and then from there the symptoms may vary. The point really is to find some one to assess you for any conditions/symptoms that may be treatable and go from there.

 

[Hutan]

Yes, early on in the illness all three of us in my family started getting frequent pins and needles.

I'd wake up with pins and needles. Eating at a table, my arms would get pins and needles from being held above the table. To stop it, I needed to lower my arms.

I still get pins and needles but not as frequently as in that first year.

Like Viggster, I think abnormal pins and needles sensations are fairly common in ME.

 

[TigerLilea]

wait a minute somebody just said it's not common in ME and you're saying the exact opposite. It can't be both can it?

If you look at a list of common symptoms of CFS/ME, pins and needles is not listed. Just because a person with CFS has an issue with pins and needles does not necessarily mean that it is related to the CFS. It is possible to have more than one medical issue happening at the same time. For instance I have developed arthritis pain in the last few years, however, I am not not claiming that my CFS is getting worse. There is absolutely no relation between the two. I have both CFS and arthritis. Two completely different things.

We are not doctors here. You are asking us to give you very definite Yes or No answers which we can't do.

 

[Suffering]

Is the pins and needles from ME progressive? Is it actual nerve damage or what's the reason for it?

 

[viggster]

Is the pins and needles from ME progressive? Is it actual nerve damage or what's the reason for it?

Well for me, this symptom has improved over the past few years. I don't think anyone knows why it happens (lack of research) but someone please correct me if I'm wrong.

 

[Suffering]

Well for me, this symptom has improved over the past few years. I don't think anyone knows why it happens (lack of research) but someone please correct me if I'm wrong.

what exactly were your symptoms? Was it actually pins and needles?

 

[Daffodil]

id get an MRI of the spine..my mom had this feeling for yrs and it was mild, on and off. we never checked what it was because b12 seemed to help it. a few yrs later, it got really bad and MRI showed nerve compression in lower back. surgery wasn't quick enough and now she has permanent nerve damage/drop foot

 

[Suffering]

Yeh but I'm also getting it in both hands occasionally. It doesn't seem typical of spinal compression

 

[charles shepherd]

Yeh but I'm also getting it in both hands occasionally. It doesn't seem typical of spinal compression

I fully understand that you are trying to get an explanation for this symptom and everyone is trying to be as helpful as they can here

But I'm afraid that nobody (even a doctor!) on an internet discussion forum can diagnose whether this is related to your ME/CFS, or is being caused by another medical problem - as I pointed out in my earlier post

So you need to discuss this with your normal doctor (GP if you are in the UK) who should take a proper history, examine your arms, legs, neck and nervous system and arrange a few blood tests

If he/she is uncertain about the cause you could be referred to a neurologist (or other specialty if this is more appropriate) for further assessment and investigation

 

[Suffering]

I wish people would stop urging me to see a doctor.

I have been put on a long waiting list to see the neurologist. By the time the appointment arrives, all my nerves will be permanently damaged.

I am not choosing to not see a neurologist. I am being forced to wait.

 

[NelliePledge]

People Dr Shepherd especially have taken time to try to help. Up to you if you take any notice but it sounds sensible to me to talk to your doctor GP about the concerns you have.