Pain in hands and feet

Booble

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Hi Emmarose, I don't get it in hands but I sometimes get a weird, strong foot pain when I get out of bed and onto the floor. Very random. I haven't thought to see if the timing is connected to flare-ups.
 
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Hi I get this too and suspect mine might be chronic bartonella infection because I have so many other of the symptoms, e.g. migratory nerve pain, a tickly feeling in the throat, gastritis, irritable bladder. I've started treating it with antibacterial herbs Buhner recommends and so far have had some improvement in overall health and pain.
 
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I always get pain in hands and feet before or at beginning of a flare ...
It's like an intense nerve tingling / aching and crushing feeling ..
Do others get this ?
Do we know why it's hands and feet ?
What you're describing is peripheral polyneuropathy. You should see a neurologist. I had PN for years and didn't know it. It begins at the tips of your fingers and toes (that's the tip of your peripheral nervous system) and works its way up your limbs toward your central nervous system (your spinal cord and brain). This is why it's described as having a "stocking and glove formation"--meaning, it occurs where you'd be wearing socks and gloves.

Mine was discovered when it reached my knees and elbows, so it was pretty far along. It went undetected because, as it turns out, you don't need to have tingling, and the numbness can be insidious. I didn't have tingling at the time (I do a little now) and I had numbness, but didn't know it. So when doctors would ask "Do you have any tingling or numbness?" I'd answer "No", and apparently that was enough for them to rule out peripheral neuropathy. So they'd always try to refer me to a rheumatologist. (I didn't have any rheumatological disease). I actually went to see the neurologist for headaches and sleep problems. I told him about the pain I was experiencing in my arms, hands, legs and feet, he did his tests, then sat back and told me. I was pretty shocked.

I'd had significant pain in those areas at the time--throbbing, aching or stabbing pains--especially at night. Then after treatment began I had more tingling sensations, as well as strange heat sensations and deep, unscratchable itches, which I still get. I also get occasional pain and numbness, or like someone just stabbed a toe with a needle. My neurologist believes that part is permanent damage. But it's now only in the tips of my fingers and the top portion of my feet, having healed after several years of treatment.

PN can be caused by many things, and many of those things can cause fatigue. Sometimes there are no answers and it's deemed "idiopathic". But a load of tests might help you figure out an underlying cause for it, and thus a treatment.

It turns out that part of my underlying problem with CFS/ME was a really rare and not well-understood Vitamin B12 metabolism disorder, likely genetic. I'd begun having problems with B12 when I was about 18 (I'm now 43) and they didn't understand it, nor was I properly treated until 5 years ago. It was my neurologist that suspected the PN was associated with B12, even though my serum B12 tests were normal. I'd had mild macrocytic anemia that would come and go, but with metabolism disorders, the serum tests look normal because they check for the B12 that's in your blood, not in your cells. And a metabolism disorder is a problem within the cells.

Only through experimentation were my doctor and I able to be sure that it was a metabolism disorder. He initially gave me the standard treatment of B12 injections of once per day for 7 days, then once per week, then once per month. It didn't work. I did some research about metabolism disorders and decided that I'd need a lot more. So I took 1 injection every day for 30 days, then 1 injection every other day for two months. My neurologist then did his exams and....it worked.

So now I'm on a lifelong maintenance dose of 1 injection every two days. My anemia is gone, my PN is improved and fatigue improved. My hematologist tested me for a genetic explanation and I do have a mutation on the MTRR gene, but she, and an expert from UC Davis and my genetics team, are unsure if that's the cause of the metabolism disorder. We just know I have one.

I still have quite a bit of fatigue, and it's possible that 20 years of B12 deficiency did its damage. But I'm definitely better now than I was before I began that treatment.
 
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I had PN for years and didn't know it. It begins at the tips of your fingers and toes (that's the tip of your peripheral nervous system) and works its way up your limbs toward your central nervous system (your spinal cord and brain).
Great Synopsis there!

Yes- Peripheral neuropathies.

My version- the outer half of my right foot is slightly numb and tingly as is the corresponding location in my hand.
this hardly bothers me at all. Its just odd.

Other related weirdnesses:

abrupt creepie awful swelling of the vein in my hand, which creeps up my arm. New Remedy- tHC cream stopped it within 20 minutes and its not returned. This used to happen more. I was in fact staring at it, as it started up. I was: OH this? This has been gone for a while.

Cold dense places in hand and feet/like the heel- thats wind. It feels like it is inside the bone. In chinese medicine, they use this term. Blows in , blows out. moves around.

My heels and elbows report- a type of odd inflammation that gave me bursitis and my heel continues to feel very strange, and can't handle hot water.

That same heel had lots of wind inside of it: bubbles- I could feel the bubbles. That left, after doing some diet things for a few weeks.

Bodies are- strange. Amazing its still working as well as it is, see: Diagram of one cell.
 
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@MagicalMe thank you for sharing your story ...and explaining about PN ...I didn't know it had a name and also am interested that it can be caused by other things
No problem! I also meant to add that PN itself can cause fatigue by interrupting your sleep. I was told by my neurologist that he believes I have Periodic Limb Movement Disorder (PLMD), caused by my PN. The tiny movements can kick you out of deep sleep and make you feel unrested. He said the PN need only be in the tips of your toes to cause PLMD.

I should point out to anyone else reading that I didn't know I had PN until it reached my elbows and knees. For some with CFS/ME, it might be worth considering that they have PN and don't know it and it's interrupting their sleep.

In addition to treating the underlying cause, your PN can be treated with gabapentin (prescription only), but you might also consider 500 mg of Alpha Lipoic Acid and 1000 mg of Acetyl L Carnitine (per day). While that combo has mostly been tested against diabetic neuropathy, I've found it to be helpful for mine. I felt gabapentin caused too much tiredness and appetite loss for my needs, but it might be helpful for you. I'm very sensitive to medications. Because of that, I take 100 mg of Theanine (Jarrow brand, in capsules) for PN pain at night. Theanine is an OTC amino acid and works similar to gabapentin.

I take the Theanine with 1000 mg of Taurine (Pure Encapsulations brand), which we discovered I had a surprising deficiency of after a pair of amino acid tests. It seems to cause a relaxing feeling for me. That combo helped me sleep much better and improved my fatigue. I actually feel rested most of the time now. After years of always waking up feeling unrested it was life changing.

If I ever have any muscle or PN pain any other time of day I'll pop 100 mg of Theanine and it does the trick within 30 minutes.
 

Emmarose47

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For me I only get it when starting to flare up before a crash ...it can last a couple of days but then goes ...
Maybe its not PN
 
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For me I only get it when starting to flare up before a crash ...it can last a couple of days but then goes ...
Maybe its not PN
It still sounds like PN. There really isn't anything else that will cause those sensations. But I could be wrong, of course. The only way to know for sure is to see a neurologist, who will do an in-office exam and test your sensory perception in those areas, as well as your balance.
 
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It might not be PN, although that is common in ME.
Pain in feet is one of the symptoms used to clinically diagnose Bartonella. An Elispot test from ArminLabs in Germany or a EPCR from Galaxy Diagnostics are two of the most reliable tests. A nutritionist or lyme literate doctor can order these. Best treatment is multiple anitbiotics for a minimum of 6 months prescribed by a lyme literate doctor. Good luck!
 
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It might not be PN, although that is common in ME.
Pain in feet is one of the symptoms used to clinically diagnose Bartonella. An Elispot test from ArminLabs in Germany or a EPCR from Galaxy Diagnostics are two of the most reliable tests. A nutritionist or lyme literate doctor can order these. Best treatment is multiple anitbiotics for a minimum of 6 months prescribed by a lyme literate doctor. Good luck!
The pain and tingling associated with lyme is peripheral neuropathy. It's actually standard to test for lyme in patients with PN (though most doctors use the standard western blot and not the Elispot). There's really no other explanation for those types of sensations--only a damaged nerve can produce them.
 

Emmarose47

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Does lime always have the symptoms of a ring around the bite ? I was bitten by a tick but later bloods showed I didn't have it
 
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Does lime always have the symptoms of a ring around the bite ? I was bitten by a tick but later bloods showed I didn't have it
The stereotypical ring around the bite isn't always present, no. There is some argument as to whether or not the standard lyme test, which I imagine is the one you took, is accurate. But before going that route, I'd say first see a neurologist and see if there's any other underlying cause for your symptoms. The tests mentioned above (Elispot or EPCR) aren't widely accepted in the medical community--though that certainly doesn't mean they're not valuable. But the treatments for chronic lyme can be difficult and it's worth exploring other causes first--at least in my opinion. After years of having so many "normal" or "somewhat-normal" tests, a diagnosis of PN was eye-opening. It also helps that physicians actually acknowledge and accept it and can't claim your symptoms are psychological. My doctors were far more willing to help once I received that diagnosis.
 
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@Emmarose47 Bartonella is not lyme although it is a common lyme co-infection which is why a lyme literate doctor is needed to treat. It can be transmitted by fleas from cats, a cat scratch or ticks. Its a very common infection in cats, around 40% have it and its easily transmitted to humans yet most people don't suffer with chronic symptoms. However, some unlucky people can, a bit like in Lyme.
The pain in the feet is not nerve damage as in PN but does involve the nerves. Because Bartonella primarily infects endothelial cells it reduces oxygen to parts of the body, including nerves, and this is felt most in the extremities like feet and hands. After resting the pain can be more intense because of something called ischemia-repurfusion. This video explains things really well and much better than I could
. She explains symptoms, testing and treatments in her other videos which I've found helpful.