Pins and needles

[flybro]

yep, more common on left but also can be right side, hands, feet,sometimes up leg and sometimes around mouth and nose,

dehydration and cold makes much worse

 

[TigerLilea]

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.

There isn't really anything else that we can say to you. Until you get a diagnosis from a neurologist, you won't know what is wrong with you. I totally understand that you want answers now, you don't want to have to wait, and I feel bad for you that you do have such a long waiting period to be seen. However, we can't give you the answers that you want to hear and you have to accept that. Getting upset with us isn't going to change anything.

If you haven't done so already, phone your neurologist's office and get your name added to the cancellation list. Sometimes you can get lucky and get in months earlier than your original appointment.

 

[viggster]

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

Oh yes, lots of those, plus electric shock-type sensations, lots of muscle twitching too. So much muscle twitching I got really worried about having ALS. (But nope, good ole' ME).

 

[wonderoushope]

I get pins and needles in my arms and hands and sometimes my feet when I wake-up. I went to my doctor and she said it's probably because I am sleeping too heavily on my arms or that I have fibromyalgia because I have tenderness in a lot of my joints. I don't think it's just because I am sleeping too heavily on my arms (as this is just something that has started in the last 4 months, when I started to get muscle pain all over my body), something seems not quite right with why it is happening. Anyway, I had a MRI and I don't think any issues showed up.

The reason I am chiming in, is yeah basically a GP can say diddly squat and just sort of give you a vague idea what the problem is. Of course no one can but a specialist can diagnose, but at least you can see if it's common in an illness so you can ask more questions when you see your specialist.

The OP came on here, and now she knows that some people get it and some people don't, so it may or may not be an important factor, but something they can talk to their doctor about.

 

[Sidereal]

I had terrible paresthesia and peripheral neuropathy for several years. Fat-soluble thiamine got rid of 90% of it in less than a week.

However, by far the most common cause of 'pins and needless', numbness etc. is chronic hyperventilation / anxiety disorders. It can be hard to spot and diagnose because the hyperventilation doesn't look like an acute panic attack, it tends to be maintained by occasional deep sighing respiration which perpetuates the chronic acid-base imbalance and electrolyte derangements (calcium, phosphate, potassium).

 

[Suffering]

I had terrible paresthesia and peripheral neuropathy for several years. Fat-soluble thiamine got rid of 90% of it in less than a week.

However, by far the most common cause of 'pins and needless', numbness etc. is chronic hyperventilation / anxiety disorders. It can be hard to spot and diagnose because the hyperventilation doesn't look like an acute panic attack, it tends to be maintained by occasional deep sighing respiration which perpetuates the chronic acid-base imbalance and electrolyte derangements (calcium, phosphate, potassium).

that's an interesting comment about hyperventilation.

I have considered it as a cause, but I don't see how it can cause the symptoms I have.

If Im getting pins and needles why doesn't it go away if I immediately slow my breathing?
And why would it always get worse immediately during a hot bath? And after a long walk?

I actually do have an unusual breathing pattern.
It tends to be very shallow most of the time and I even pause my breathing if I'm focusing on something.

But I thought Hyperventilation is when you're getting too much air not too little?

 

[JES]

I think peripheral neuropathy (if that's what you have) is common with this disease, much more common than is known. If it's peripheral neuropathy it's usually symmetric, meaning you have it on both legs and both hands, and usually length-dependent, so more pain at the end of extremities. I have had this form of neuropathy for almost 10 years now, it hasn't progressed and the pain has gotten a bit less over the recent few years, nor has it caused any complications. With LDN the pain from it reduced even further, so I would say it's mostly reversible.

Anyway, a doctor can confirm if it's anything more serious with an EMG test, or if it's not in the peripheral nerves.

 

[Suffering]

Can peripheral neuropathy actually be tested for?

 

[JES]

Can peripheral neuropathy actually be tested for?

Yes, with an EMG test as I said, which is a sort of nerve conduction test. It can detect damage caused by most of the serious types of neuropathies. It will not detect pure small fiber neuropathy (where only small nerve fibers responsible for sensation are damaged).

 

[Sidereal]

that's an interesting comment about hyperventilation.

I have considered it as a cause, but I don't see how it can cause the symptoms I have.

If Im getting pins and needles why doesn't it go away if I immediately slow my breathing?
And why would it always get worse immediately during a hot bath? And after a long walk?

I actually do have an unusual breathing pattern.
It tends to be very shallow most of the time and I even pause my breathing if I'm focusing on something.

But I thought Hyperventilation is when you're getting too much air not too little?

Slowing your breathing is not going to help immediately because of long-term compensatory changes in bicarb etc that occur in the body to maintain pH in the face of overbreathing.

Hot bath is a vasodilator.

Exercise of course worsens things because it increases breathing so even more CO2 is blown off than at rest.

Erratic breathing patterns are common in anxiety disorders. You do see it in ME/CFS also. My breathing is really all over the place.

Anyway, you say you don't want to be told to see a doctor but that is precisely what you need to do. We can't diagnose people on an internet forum, as others have already told you multiple times.

Based on the way you've come on here and spoken about your symptoms (or lack thereof), it sounds like your stress levels are really high and it's not really clear why you think you have ME/CFS. If there is a relatively innocent explanation for your symptoms then hanging around a place like this where people with a severe long-term disabling neurological condition hang out might be the worst thing you can do for yourself.

 

[Suffering]

@Sidereal

I also said I've been forced to wait to see a neurologist. There is nothing I can do to reduce the waiting time unless I win the lottery.

Exercise of course worsens things because it increases breathing so even more CO2 is blown off than at rest.

Isn't more oxygen taken in as well though?

And why would hot bath worsen it?

 

[Sidereal]

Isn't more oxygen taken in as well though?

And why would hot bath worsen it?

More oxygen being taken in is precisely the problem.

Heat is a trigger for hyperventilation, anxiety, panic etc. which can then cause pins and needles. Of course hot bath can also make symptoms worse if there is demyelination. Hence why you need a doctor to get to the bottom of this and why asking a thousand questions on an internet forum is not going to get you a diagnosis.

 

[Mohawk1995]

I will take you on an entirely different thought process to describe how it could be more than one factor at play and that any of the people's explanations could be true or none may be completely true. First a disclaimer, I am a medical professional whose son has suffered with CFS/ME. He in fact had his leg from mid shin down first be so painful he could not weight bear and then had parasthesias (pins and needles) in it. Resolved without intervention of any kind. All tests were negative.

One of the things I have found helpful for me to understand how the body works is to apply the concept that every symptom is an alarm to an "interpreted" threat. This interpretation takes place within the nervous system and almost exlusively in the subconscious of our brain (meaning we have no direct control over it) A straight forward example would be an ankle sprain. Definitely injury to the tissues, but there would be no pain if the ankle was not connected to the brain. We also know that the alarm centers of the brain can react as if something is a threat even when there is no evidence of damage or impending damage (migraines with unknown cause). The alarm response can also be triggered and have unusual symptoms when something systemic or not clearly located activates the alarms. In the case of CFS/ME there are no visible changes on imaging and unless you can test the chemicals in the brain at the cellular level you will likely not find anything with lab results. Some studies have found that some of these chemicals/molecules are at extremely high levels in the brains of those who suffer with CFS/ME. So that in and of itself could be interpreted as a threat. So to answer your question, yes it could be peripheral neuropathy or a neurological disorder like MS or ALS, but because you have been diagnosed with CFS/ME the most likely culprit is that and a symptom (threat) response to it. By all means seek a professional to assess whether or not it is something that can clearly be defined and remember the more tests that come back negative the less likelihood it is something else. Don't ignore the symptoms, but keep in mind they may be your body's way of telling you something is wrong even if it is not immediately apparent, life threatening or dangerous.

Hope that helps. This explanation was the most helpful in our process with our son.

 

[Old Bones]

Can peripheral neuropathy actually be tested for?

@Suffering Yes, there is a test for peripheral neuropathy -- the Quantitative Sudomotor Axon Reflex Test (QSART). Unfortunately, depending on your location it may be difficult to get since it is not widely available. Here are a couple of links, the first one very technical, and the second providing the basics only:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046462/

https://www.foundationforpn.org/wha...ests/quantitative-sudomotor-axon-reflex-test/

You may also be interested in the following link. It provides a list of tests for treatable causes of small-fiber polyneuropathy. I've been able to get most of these done through our mainstream medical system.

http://neuropathycommons.org/sites/default/files/Tests for SFPN causes 9-30-15.pdf

Best of luck in finding the answers you are searching for.

 

[Hip]

@Suffering, I am going to answer your question quoted below in this thread, because the other thread you posted it on has been closed for moderation, and that can sometimes take several days before the thread is re-opened again.

@Hip. Explain to me how pins and needles can be caused by anxiety?

Of course I've heard that before but I've never seen any explanation for it other than hyperventilation.

It seems to be a bogus explanation

I totally agree with you, that when someone (including a doctor) says a physical symptom like pins and needles or muscle aches can be caused by a symptom such as anxiety, which exists in the mind, this seems a very unlikely scenario, and I don't buy it either.

The way I view generalized anxiety disorder (GAD) — and the way I think the medical profession should view GAD — is as a physical disease or illness of the body and the brain. In the body, this physical disease of GAD can cause various physical symptoms such as paresthesias, muscle aches, and so forth; and in the brain, this same physical disease of GAD can trigger what are known as neuropsychological symptoms like anxiety. Neuropsychological symptoms are symptoms that appear in the mind, but are caused by neurological dysfunction in the brain.

So it is not that the anxiety symptoms in your mind cause the paresthesias and the other physical symptoms. No. It's more that the physical disease of GAD can causes both physical and mental symptoms.

A doctor may say that "anxiety can cause physical symptoms"; but I think that is wrong. I think the way you should read that is "the physical disease of GAD can cause physical symptoms, as well as symptoms like anxiety that appear in the mind, due to the way this disease neurologically affects the brain".

Does that make sense? It took me many years to see things from this perspective.



What may potentially have caused your GAD (if you do indeed have GAD) is a viral infection. I had this experience myself, of an infection triggering GAD anxiety, as well as physical symptoms like paresthesias. The infection may be chronic low level one, which may not be of much concern in itself, but what chronic infections may do is increase the immune response, and increase inflammation levels in both in the body and the brain.

The body inflammation may be causing the paresthesias and muscle aches; the brain inflammation may be causing the neuropsychological symptoms like anxiety that appear in the mind. If you look at some of the latest research on conditions such as depression, bipolar and OCD, they are finding these conditions appear to be underpinned by brain inflammation (neuroinflammation).



I figured out that my own virally-induced severe generalized anxiety disorder was likely underpinned by brain inflammation, because I observed that when I took a lot supplements (especially N-acetyl-glucosamine) that reduce brain inflammation, my anxiety was hugely improved.

And then my outlook on the world was so much better. It's extraordinary how the condition of anxiety can make everything seem so much worse, and so fraught with worry, concern and tension. All that cleared up with the supplements I took, which as I mentioned, are detailed in this thread.

Though the standard medical treatment for generalized anxiety disorder is typically SSRI drugs, or sometimes benzodiazepines (though benzodiazepines sometimes cause lots of withdrawal symptoms when you finally stop them, so some doctors are reluctant to prescribe them).


There are also several other classes of drug that can be used to treat generalized anxiety disorder: see this post.

 

[Mohawk1995]

Because a thought is physiology and anxiety could be defined as a cluster of thoughts then anxiety is by its nature physiological. If anxiety is physiological it can be changed by other physiology and can change or influence change in still other physiology. I would actually argue that anxiety is more subconscious physiology than conscious and that it is the result of protective mechanisms being activated in the subconscious brain. So this premises could well be true:

• Anxiety can be influenced by physiology (anxiety created by chemical, hormonal, molecular substances in the brain and changes in the wiring/connections of the brain - Neuroplasticity)
• Anxiety can be influenced by active thought(s) so our thinking can change the structure and function of our brain (the challenge is that the subconscious brain is much larger and more powerful than the conscious so you typically cannot think your way out of anxiety)
• Anxiety can influence the physiology of the brain and thus the body (immune system, digestive system, the rest of the brain, the rest of the body meaning unusual symptoms which are by the way a function of the subconscious nervous system)
• Anxiety can influence active thought by exerting its power and re-allocating energy and pathways away from the conscious part of the brain and to the subconscious (brain fog, language difficulties, difficulty concentrating)

If you have severe anxiety, seek treatment. But you may also have physiology creating anxiety that you have no direct ability to control. You also need to assess whether what you are doing including writing on this forum, seeking medical assistance, attempting treatment regimens or researching more on the internet is creating more anxiety. If so, you may need to curtail or limit those activities.

 

[Hip]

anxiety could be defined as a cluster of thoughts then anxiety is by its nature physiological

I wouldn't myself define anxiety as a cluster of thoughts. It's more a natural state of alert of the brain, a state of alert which normally kicks into action when you perceive danger and precarious situations. If you were walking down a street, and were suddenly pulled into a dark alleyway and had a gun pointed to your head, your anxiety levels would go through the roof, because of the imminent danger. Anxiety is the brain's mechanism of putting you on full alert.

That's what moderate to severe GAD feels like: GAD has all the intense mental tension and worry that having a gun suddenly pointed at your head would trigger. Except that in GAD, there is no gun, and there is no external reason for the anxiety. Rather, the anxiety is caused internally, presumably by a malfunction of the anxiety circuits of the brain. Due to this malfunction, these anxiety circuits are permanently turned on, so that you constantly feel in an anxious state of full alert, but without any external reason for this.

The anxiety circuits of the brain are primarily in the amygdala, hypothalamus, prefrontal cortex and locus coeruleus. The state of anxiety is related to glutamate levels in some of these brain areas such as the amygdala. Studies have shown that when glutamate antagonists are locally infused into the amygdala, this decreases fear and anxiety in animals.

So this suggests that high glutamate in the amygdala can cause anxiety. Now it just so happens that when you get brain inflammation, the brain's microglia, activated by the inflammation, are known to secrete large amounts of glutamate. Thus any brain inflammation in the amygdala may cause significant glutamate release in that brain area, thereby switching on the amygdala anxiety circuit, chronically triggering the anxiety state, and thereby leading to the anxiety symptoms of GAD. This glutamate release from activated microglia theory of generalized anxiety disorder is my own hypothesis of what causes GAD, by the way.

This hypothesis can also explain how an infection can trigger the state of anxiety and GAD: infection in the body can ramp up brain inflammation by several pathways, including the vagus nerve and trigeminal nerve pathways. So then in this brain inflammation occurs in the amygdala or other brain areas linked to anxiety, you may get GAD.

 

[Suffering]

Anxiety, stress and psychosomatic disease are just excuses to explain unidentifiable rare or obscure diseases.
I don't buy any of it. It's dangerous. Ms is a serious disease. We can't afford to entertain quack diagnoses given the seriousness of my situation.

 

[Hip]

Anxiety, stress and psychosomatic disease are just excuses to explain unidentifiable rare or obscure diseases.
I don't buy any of it. It's dangerous. Ms is a serious disease. We can't afford to entertain quack diagnoses given the seriousness of my situation.

Generalized anxiety disorder is not a quack diagnosis, it is a serious illness that can have profound, life-altering effects, such loss of the ability to work or function in the human social sphere.

You may not have generalized anxiety disorder; I just suggested you might want to look into GAD because it fits many of your symptoms. However, don't call GAD a quack diagnosis.

 

[Suffering]

ME is what fits my symptoms best. Not anxiety. You were the one who insinuated that I was making this up. My instinct tells me it's not anxiety. The patient knows best.