Why would PN be so much worse during the night?
 

Is this just because we aren't engaging our brains and bodies as much as we do in the day? If so this seems strange to me because I suffer from fatigue and when I have a lot of bed rest during the day it doesn't affect me nearly as badly as it does in the night. In the day time I get cold wet legs and squelchy feet sensations whereas in the night it's all grip and burn, burn, burn:mad:

There is a priority regarding nerve fibers. The proprioceptive fibers in the tendons and muscles are myelinated and very fast,
and have 1st priority in getting to the brain. (the brain needs to know where the feet are at all times, etc).

Then come the other fibers. These are slower ...so when your feet are still they start to send their messages.

Here is a link explaining the 4 types:

http://faculty.washington.edu/chudler/cv.html

At one time I found some other explanations about efferent fibers. The cold sensing ones mask the heat ones, and that is why many remedies have menthol/camphor in them, to stimulate these to block the burning sensations. Biofreeze is one of those topical things that work well, for excessive burning.

This is so useful and interesting to learn more about thank-you again Mrs D. It makes complete sense that the SFN is so painful at night now you've explained.

But my legs and feet, hands and arms and sometimes my neck, shoulders and back all constantly feel as if they have camphor/ menthol rubbed on them anyway during the day so I don't think I'd want to treat this with the real thing? Or maybe this would help with the nighttime pain - which is more like neuralgia on my feet, the inside of my ankles, shins and knees all the time. I would far rather use a topical med although my skin is very sensitive.

Mortons Epsom Salt Lotion also
 

helped me w/ burning tenderness on the tops of my feet. I don't care if I sound like a broken record. As hard as it is to find any relief with this condition, anything that works should be tried. Individual results may vary, I don't own stock in the company. Good Luck, Ken in Texas

Which med should be tried Ken? Biofreeze? I'm happy to try anything but really struggle with drugs in pill form. For me the problem is knowing what's causing things as much as treating it. I feel that if you can find the cause then the treatment options may be more targeted, but perhaps I'm being naive. I take Cymbalta at present. With all the drugs I've tried to date (about 15) I've had problems trying to work out if one of my conditions is causing the symptoms or whether the drug is causing it.

My favourite drug is actually Zopiclone because it knocks me out for the night but the doctor will only prescribe it to me for infrequent use because it's so addictive. Nothing I've taken has yet reduced the nerve pain, nettle sting or wet sensation apart from Amitriptyline which, after three years, was causing severe heart palpitations and dizziness. It also stopped when I was on Methotrexate and Nifedipine but as all the immune blood tests and lumbar puncture haven't shown it to be immune mediated - I think it must be regarded as idiopathic. I won't be restarted on an immune suppressant unless my RA comes back in a classic way.

I don't think the Morton lotion is available in Scotland.

Epsom salt soaks are your next best bet. The magnesium blocks the firing of the NMDA pain receptors, so it offers some relief used topically. See what you can find topically where you live or can order online in the way of magnesium creams or lotions. Sometimes they call topical "magnesium oil" but it is not really an oil, but just a very saturated liquid form.

One other name is Epsom-IT, and also Kirkman's magnesium cream.

It really works... many of us use it for pain, cramping etc.

Just in case doesn't return anytime soon, he was talking about Morton's Espon Salt lotion. He put it in the title of his post.

http://www.mortonsalt.com/for-your-h...-epsom-lotion/

I think it helps as well.

Thanks very much Mrs D - I do have epsom salts to use in the bath but am really not sure about the quantity/ ration of salt to bath and it didn't make much difference when I used it last time. Probably quantities were insufficient.

I will see if I can buy some topical magnesium creams/ lotions online. Should I be taking Magnesium supplements too perhaps? - I do have some but haven't really tried it because I was trying to introduce B12 just now and wanted to be methodical. Mat

Oral will work... but I have found that when blood vessels are not working well in the feet and hands, the blood cannot get thru to the toes and fingers, so the magnesium in the blood can't get thru either.

For a bathtub you would use a cup or 8oz, depending on the water level of the salts. In a small tub only for feet you'd use less, like 2-4 oz. There is a limit at which epsom salts can get magnesium thru. I think the lotion is more efficient.

Here is a link about an experiment which measured epsom salts in soaks:
http://neurotalk.psychcentral.com/post864114-32.html

Never soak in HOT water. Use only lukewarm.

effective relief
 

Isn't that the holy grail? Mt chiropractor gave me some Biofreeze and it helped a little while my knees were on fire, but I like the Epsom Lotion better. I too have a night pill that I am in a relationship with, generic Ambien. I have been down the opiate road also the Neurontin road. Not taking then anymore. If you read here, you will notice a lot of talk about medications and side effects. Some things work for some, others have side effects that are just as bad as the relief brought. Since there is spotty effectiveness all around, many study Mitochondrial health and try to get their blood in good shape and eat foods that support nerve health and avoid anything viewed as inflamatory. I am getting better and am currently practicing walking in my house without my walker. The hard fact about nerve repair is it is so slow. Think geologic mountains to the sea slow. Some research not available yet includes knocking down the bodies own roadblocks to speedy nerve regeneration. So, years go by and if a person gets relief it is seldom attributable to any one terrific thing. If a person does all that they know to do thats all you can do. I feel your need to get the cause nailed down, it's common to us all. While you are on the hunt you can make sure you are not shooting yourself in the foot by taking care of nutrition, excersise, many have to supplement such as b-12,D-3,etc. So fight the good fight, lots of folks here willing to listen. Good Luck, Ken in Texas.

Thanks Ken from Texas - you sound like a man after my own heart! I walk the dogs daily, exercise routinely (not for a week as I've been rendered a blob by this mix of diseases) and eat like a paragon of virtue - wheat and dairy free, no refined foods and lots of seeds, berries and leafy veg and fruit! I take B12 sublinguals and AdCal D3 and Duloxetine (planning to wean off slowly when I'm back from a week away working).

I am thinking I need to be in control of my health again and not let doctors bully me into accepting the concept of idiopathic or drugs that may lead to long term problems when trying to withdraw. To me personally idiopathic sounds like idiotic and pathetic rolled into one - doctors and researchers opting out of investigating further because there isn't the time or funding - and I won't just sit back and accept it. Nor would our doctors if it was happening to them I'm sure! Mat

Sorry to jump on the band wagon here but I too feel your pain :( over 20yrs now and the nights are horrible I know. After I have work hard all day and distracted by my intent then to stop and my focus is pain... but... I am still shocked by the calming effect of Valerian Root. It is a God send for me...like right now as we speak...

Oh that is really interesting to know thanks Malia. I will try some and see if it helps me too. Sorry you have had this for over 20 years. For me it's only about four years but I was never a good sleeper to begin with!

In order to allow about 6hrs. deep sleep without feeling any pain, I have been taking Ambien CR every night for the past 4 or 5 years. The Ambien without the CR would wake me up after a few hours with pain. When I started the Ambien Cr, it is more of a time release so instead of the 10mg's, the CR has 12.5 mgs and a small amount kicks in a bit later. Really has made a difference.

It is unbelievable to have this time not to feel any pain. I, myself, was never a good sleeper either; but the pain made sleep almost impossible until i started the Ambien Cr. Probably not for everyone; but I am quite thankful for the sleep I know I will get each night.


Gerry

Sleep is soooo important to our well being. I got brain fog with the drugs for sleep. I do not do Rx drugs because of the side effects I have experienced and prefer to go natural as possible ... At night I do a Calms Forte and a Valerian and able to sleep the whole night. :Zzzz:

I agree with you Malia. With the RA drugs I took they were intended to modify the actual disease process whereas the ones for SFN are just to mask it or make you feel better about it. They alter brain receptors etc snd that really bothers me. So I plan to slowky come off Cymbalta and Omaprezole now and gp for natural methods including magnesium creams and Valeri root. But I took a zopiclone last night because I have a big day working and I nedded to sleep properly in my hotel room. Will start weenjng of drugs and trying out natural alternatives wheh I'm home again - many thanks.

My experience of discuss was with the Statin drugs. I agreed to take and it dropped my Cholesterol like a rock but... I had several side effects that I went to talk to the doctor about and he just wanted to prescribe another drug to treat that system... and some PT for the muscle tightness in my leg... I did that with no relief... finally put 2 and 2 together and when I stopped the symptoms did too... I am happy to report that through diet and the holistic approach I hit all the numbers on my last blood work up :) Now if I could only get the feeling back in my poor feet...I'd be doing a gig :) Oh by the way... I am part of the Campbell clan :wink:

I will have to look this drug up Gerry as it may not be available in Scotland or be under another trade name perhaps. Thanks, Mat

Malia i dont know what the cause of your PN is or if you have found a cause yet, but statin drugs are known to cause peripheral neuropathy. If you had muscle pain while taking them, that could be your cause right there.

[QUOTE=MAT52;1124733]I will have to look this drug up Gerry as it may not be available in Scotland or be under another trade name.



(There is a generic available which is Zolpidem 10mg and 12.5mg.)

The most important thing to do when taking this type of sleep med is to go to bed within 10-15 min. after taking them; especially when newly started. Some will get sleepy very quickly and that could cause unbalance. As I mentioned previously; never was a very good sleeper; years of being sleep deprived.

When the PN/spine issues became too painful to even lay on the bed at night; I gave in to the Ambien/ then later Ambien CR. I am amazed at the ability to go into well needed sleep enabling me to better face another 24/7 day of pain.

I know this is not for everyone; but for me it is a godsend.


Gerry

[QUOTE=ger715;1124786]Thanks Gerry. I have a similar sounding drug on prescription called Zopiclone. My GP prescribes it for infrequent use as it apparently addictive. I feel the same way about it as you feel about your drug Ambien. It enables me to sleep through the night as nothing else ever does. I take one or two a week as my special treat! Mat

[QUOTE=MAT52;1124790]
Mat,

I had asked the pharmacist about this med being addictive . Asked him what would be the consequence of my stoping the Ambien? He said it's only addictive as being addictive to sleep. The downside; you won't get the sleep you were getting from using it.

Mat; sleep is a "special treat" for many of us that find sleeping otherwise difficult.


Gerry

I also have a script for zolpidem (generic Ambien), and likewise my GP will only prescribe it sparingly for infrequent use. (I get fourteen 5 mg caplets at a time with one refill.) It's a godsend on those nights when I can't get to sleep and I have to get up in the morning.

Two years ago the FDA lowered the recommended dosage because of residual morning affects of the the higher dosages. I nearly died when I saw this because 2.5 mg is enough to knock me out, and I'm not small at all.

http://www.fda.gov/NewsEvents/Newsro.../ucm334798.htm

The FDA has informed the manufacturers that the recommended dosage of zolpidem for women should be lowered from 10 milligrams (mg) to 5 mg for immediate-release products (Ambien, Edluar, and Zolpimist) and from 12.5 mg to 6.25 mg for extended-release products (Ambien CR). For men, the FDA has informed the manufacturers that the labeling should recommend that health care professionals consider prescribing these lower doses (5 mg for immediate-release products and 6.25 mg for extended-release products).

I agree; there is a big difference. The 10mg does not last long enough. The extra 2.5 comes in a little later (time release) which helps continue the effect.

I had to get a Prior Authorization from my doctor for insurance; but also the amount they are about allowed and dosage because of the FDA requirements. I had previously been able to get 90 (3 month dose). Now I can get only 30 at a time each month can no longer get a 3 month supply.

It's so nice to know the FDA knows what we need. Except when we really need them to weed out .


Gerry

I'm excited because I'm away from home just now and found a health store where I was able to get Biofreeze and magnesium oil so I'm going to be experimenting tonight - coming off Cymbalta slowly now so the timing is hopefully very good. This support group is wonderful!!

Maybe try Epsom salt baths. A women saved my life by telling me about these. I use half a tall box of epsom salts in about 6 inches of very warm water and soak in it for 1 hour It takes 45 minutes for the magnesium to get back onto the pain nerves. When the pain nerves fire the magnesium gets knocked off the nerve. When the magnesium gets back on the nerve it stops firing signals.
Works better than any medicine has. It saved my life.

Thanks - I keep forgetting to try the Epsom salts but I am now spraying myself with magnesium oil after my bath or shower. Not sure whether it is helping much or not because I'm weaning off Cymbalta just now and the pain and headaches and nausea are absolutely horrible. I will never try one of this type of drugs again. Epsom salts here I come!

Be sure to read on the box as to how much to use and how much water. It doesn't take long for your body to absorb it.

Mrs D, in a few sentences you have logically answered the question that I have puzzled over for years!

Thank you!

My small-fiber neuropathy is typically in my palms, and I will unfortunately feel tingling and sometimes burning as one of my first sensations in the morning as I awake.

However, within a few seconds of my getting out of bed the pain seems to literally fade away. I will also notice the pain during the day when I try to take a nap, so again this makes perfect sense!

You are such a wonderful resource!

David

one of those nonsleep nights and the special treat comment really resonates right now. I took melatonin, though I have found the quality of sleep higher (the 2-4 broken I get) the quantity and duration are lousy.

I agree - this explanation is one of the most useful and well presented comments I've read in relation to nerve pain. I keep it on my notes to help me reason what is happening to me when gripped by nerve pain in the middle of the night.

Brilliant Mrs D :) Mat

good info Mrs. D. Mahalo :) I am a CNA and really busy doing my thing... running around like crazy. I don't even notice my feet and then I come home and stop and my feet remind me of what a busy day I had :)