Small Fiber Neuropathy: Foot Cramps?
 

My diagnosis is one day old. You can imagine what kind of emotional/psychological state I am in right now.

Question: Can anything relieve or prevent the foot cramps that i get at night? Are they affected or improved by drinking water? Taking potassium?

Thanks.

Are the cramps in the bottom of the foot , the top of the foot or all over?

I don't have PN but, I had cramps in the bottom of my foot and a sore heel at times, my chiro suggested arch supports - i got some partial shoe inserts w/ arch support and they really helped.

The whole front of the foot and toes is about the best answer to your question. I am getting them every night, several times a night now.

Arch supports won't do it. My symptoms are consonant with Small Fiber Neuropathy. I thought I was getting some relief from taking potassium pills, but I would like to know if anyone has any solid info.

Thanks for your response.

magnesium helps cramping. staying hydrated is also important especially in summer.

I'll give it a try.

Thanks.

Welcome to NeuroTalk.

Yes, ditto on the magnesium.

For some severe cases, magnesium + a good natural Vit E (one with all the other forms of E in it like gamma etc) helps alot.

Here is my magnesium thread, which explains how to choose a good supplement. Not all work --magnesium oxide---is to be avoided.

http://neurotalk.psychcentral.com/thread1138.html

I took 400 mg of magnesium citrate last night before bed. It was all I had in the house, so I thought I would give it a try. I avoided having any cramps throughout the night, but my tingling symptoms are progressing rapidly.

mrsD, this is my second day with the diagnosis and I can see that I have a lot of research yet to do, but put me in the ballpark here. Is small fiber neuropathy best described as "progressive," "degenerative," and/or "ultimately fatal"? I understand that I will have pain, numbness and tingling, and that this will cause impaired function, but am I liable to lose function entirely of any or all of the affected areas (hands, feet, etc.)? How fast do things normally progress? I have idiopathic small fiber neuropathy. My symptoms seem to be getting worse by the hour.

Thanks.

It all depends on what is causing it.
Dietary triggers are common. Potatoes trigger burning for me. Heavy tomato sauces too. (these are nightshade vegetables and hard to tolerate for some).
Gluten can be trigger. If it turns out to be a trigger for you, going gluten free can stop the PN completely--depending on how successful you are with the diet.

Spicey foods? MSG? all make PN worse IMO.

Toxins, and drugs are another matter. Some people recover from toxic assaults and others do not.

Autoimmune issues can be controlled. But reversal is not common.

Hereditary issues, genetic failures, are not typically recoverable.

Living a cleaner life, eating more whole foods, staying away from processed junk foods, and using some supplements to support the nerves may allow for significant healing.

Alot depends on you, how accurate your diagnosis is, and how you handle your days. Most of the posters here have gotten better and moved on. There are some who are not helped, and those may have vascular damage, or severe cell death, before interventions were started. PN is very complex and sneaky. But keeping positive is a important part, as well as being an active patient, keeping up on new developments, etc.

HI Nervous,
I hope with more information, and with more time, you will feel better prepared to deal with whatever comes your way.

Any chance you have an automated bed, as in an adjustable frame bed?
I am asking because at least some of these have an EMF and many report worsened nerve pain, spasms and worsened burning in the night.

If one has an electricty run adjustable bed frame, unplug the bed and see if you notice a difference? This suggestion goes for anyone with pain, tingling, burning, spasms and an adjustable bed frame that plugs into an outlet! :eek:

~DejaVu

My diet has been free of most of these items for more than ten years.

Accurate diagnosis? I only know what my doctors tell me. In 2008, after a rash, I had some neuropathy, so they said I had shingles. Last year, I started getting foot pain. It felt like bone pain or joint pain, not nerve pain (tingling and burning). Now, I have above the waist and below the waist symptoms of neuropathy, mostly hands, arms, legs, knees, and feet. My rheumatologist was so confident of his diagnosis two days ago that he said that, while a biopsy could be performed to confirm small fiber neuropathy, he didn't see the point of it.

Heredity? My brother has MS.

I always understood that dead or damaged nerves could not be restored. This site seems to argue otherwise. Now, I don't know what to believe. Hmm.

I have no desire to take neurontin or lyrica, the two drugs recommended by the rheumatologist, so I am going to start experimenting with vitamins and supplements, as per this forum's recommendations (B12, magnesium, CoQ10, etc.)

In the middle of the night last night, I woke up to discover that I was developing tingling in my left big toe. After an hour, the same thing started happening in my right big toe. It's like I'm watching myself fall apart minute by minute, which, to say the least, is disconcerting.

It should be interesting to see if I can keep from going cuckoo while I learn to deal with this.


P.S. Thanks for your help. It means a lot to me. Indeed, I think it's all I have right now.

Hi, Deja,

No auto bed here, so I don't think I'm exposed to the issues you raise.

Thanks for your good wishes. I'm at the beginning of things. Fear and panic are my new best friends. It appears that getting sick like this is a good way to find out what kind of a gutless coward one really is. We'll have to see how I do on that score.

Again, thanks.

Nerv.

Hi sorry for your dx and pain. Not in my foot but I often times get such a tight feeling in my calves where it is hard to propel.I am on meds though which you don't want to take but if you change your mind a muscle relaxer may help or even like ant anxiety med that relaxes the muscles. For me it is important to have the right amount of activity and this is a learning process. Where I do enough that I don't become so stiff but not too much where the pain is out of control. I agree with the magnesium. The other supplements I feel are helpful is calcium with d and vitamin c of course the multi. I have read and on here too about omega 3 bring inflammation down as well if that could be also contributing. I don't enjoy this but most people like epsom salt baths too. Sorry this is all over the place. Hope you feel better

[QUOTE=Nervous;673891]

Heredity? My brother has MS.

I always understood that dead or damaged nerves could not be restored. This site seems to argue otherwise. Now, I don't know what to believe. Hmm.
]/QUOTE]

Hi,

MS is an autoimmune disease (body attacking itself).

With an inherited syndrome such as CMT, there is nothing that will restore dead or damaged nerves.

I hope you find an answer.

Hi Nervous!

I am guessing you will find you have great fortitude! :D
Not feeling well, obtaining rather frightening diagnoses, being reminded of how fragile life can be and how susceptible we each can be to many conditions, is apt to cause us all some anxiety! :winky:
I am guessing we were all extra nervous at first.
It's often helpful to be interested and watchful as you figure out just what is going on for you! :D
Many of us may still get nervous when/if new symptoms arrive on the scene, etc. In time, you will learn to take some of this in stride though. It will never stop being a concern; yet, you will adjust to this a bit. None of us can stay ultra nervous about any chronic condition and manage the stress well.
Please don't worry about how nervous you should or should not be... or how nervous you are... in time, you will find a more comfortable "zone" in which to operate for your daily functioning!
It's great, imo, you are being so honest in expressing your concerns! I think this may help you move forward in your strategies for honestly dealing with stress/anxiety. :D
Take each day as it comes and make it as great a day as possible.:)
We are all here support!
Take great care of you!
~DejaVu

Is PN Fatal?
 

You raised this question in your 1st plea to us and no one has answered it yet. I can't leave it open any longer....I'm new here and still learning about neuropathy even tho' I've had it 11 years. But this forum has so much knowledge that I want to see what others know or have to say on this hard part of our subject.

As my older neighbor friend used to say "It doesn't kill you but just makes you wish you were dead!" We used to say that about our arthritis....so far, what I have learned is that the sensory PN I have won't kill me. But I could develop autonomic PN at any time and that is dealing with the nerves that operate our inner body organs. Now a lot of people live with this all the time because there are ways to manage this except for only a couple of organs. If your lungs are involved, then you have a bad problem and could die. I've heard of a case of this and I guess is the same for the heart but have not heard of this. The rest don't seem to shut down completely but others may add more to that....

I don't want to dwell on this but can't leave it out--what % PN patients committ suicide because they can't stand the chronic pain and don't/can't get sufficient pain relief?

What I have to work on is what causes my PN---glucose problem, have to keep control on that because complications from diabetes, heart problems could eventually get to me. I recently had a bunch of heart tests because my routine EKG was done, had been 18 yrs. Something looked a little off. My heart is in tip-top shape, that is what my "normal" EKG looks like. Now I have to remember that! (But I am so relieved and happy, walking 1 mile does pay off and not even so much, average 1-2 times a week!) I also take a statin low dose, cholesterol is genetic.

Statins are known causers of PN you know. I hope you are supporting your mitochondria with CoQ-10 and acetyl carnitine!
I hope to be making my "statin" post in the Subforum sometime this week.

i seriously doubt that any statistics are kept on the percentage of people who commit suicide with pn related pain. i dont even think that statistics are kept on the reason why people commit suicide in general. those type of statistics would be very unreliable even if they were kept. who is to say what really finally drove someone over the edge.

i only know of one person who had pn and who subsequently died of it. even with this person i dont know their whole medical history and what else they may have been suffering from.

Thanks to all. Your various comments are very encouraging, especially since I am not sharing my diagnosis with anyone that I know at this time.

I didn't push mrsD on the issue of degenerative, progressive and/or fatal because I figured she preferred not to get involved in all that. When my doctors have nothing but bad news, they always dissemble about the bad news and say, "We don't know what will happen to you." Anyone can appreciate why they would do that, but, frankly, it's not what I'm paying them for. In any case, I don't have any right to importune mrsD.

Today, I went out and bought some of the supplements recommended on this forum, i.e., B12, B6, CoQ10, Folic Acid, D3, calcium/magnesium (both in one pill), and Omega-3. I'm guessing on the doses and, in some cases, following the recommended dose on the label. I think it is probably a mistake to add so many substances at the same time because I will not know which one, if any, is working. On the other hand, I don't think I can spend six months at a time testing each individual substance.

For two out of three nights, I've been lucky with foot cramps, perhaps because I have been taking 400-800 mg of magnesium citrate. Last night wasn't so great. Mild dehydration might have been a factor.

My symptoms are pain, foot cramping, numbness, tingling, and burning. New sites on my body are occurring each day, but for the most part we are talking about hands, legs and feet. My rheumatologist said I have some muscle atrophy and some loss of reflex, but I'm not aware that it is significant or necessarily related to my sm. fib. neur. It goes without saying that I have fatigue and anxiety, but generally speaking the rest of my health is good for the moment.

If my small fiber neuropathy is going to come to affect my autonomic nervous system and/or my vital organs, that would change the game considerably. I need to know this, so if someone can tell me, please chime in.

Lying in bed awake at night and feeling my body's pain is one thing. Knowing that there is no effective treatment for the pain (except drugs with terrible side effects, like neurontin) and no cure for the pathology is another, more suffocating, more frightening matter.

By the way, I'm a little embarrassed to be so self-absorbed in this company. I'm sure there are others here who are suffering much more than I am. I'm sorry if I appear insensitive.

Nervous, my PN started when I was 30. I've had it for over 30 yrs. Mine is not progressing, but it is aggravating. If you look at your problem, as aggravation, rather than illness, it then becomes more manageable to deal with.

I use many tricks to help my problems. (I have arthritis too, which complicates the PN now in my older years).

Sometimes I use magnets, sometimes I get the Lidoderms out, I use Biofreeze gel often, I pick very comfy shoes, I don't do shovels or ladders, I use auto-relaxation and breathing exercises, and I do several supplements and follow the Zone diet, and avoid sugars. All of this has over the years allowed me to manage my pain, and aggravation. I now have to take levothyroxine for my thyroid. Sometimes I have to wear my hand braces to bed, if I've been working too much during the day.

You will learn to focus less on your PN and more on the process of protecting your body from further damage. This means watching alcohol intake, researching drugs that are offered to you and finding alternates for the most nasty ones if possible, and providing the diet and nutrients to help your body work better.

Our bodies are so complex, that they are bound to break down somewhat as we age. We are exposed to terrible toxins daily, and poor food options in this country. Each day I am grateful and thankful I don't have cancer, epilepsy, MS or some other serious problem like heart disease. The PN I consider aggravating and sometimes I do get fed up with it, but it tends for me to stabilize and not progress. Before I found the trigger of nightshade veggies, I was having burning going up my shins some nights! Who would think? !!:confused: MSG also is now hard on me, so I read labels carefully. I do have hypertension and that started around the same time as the PN, and I don't like the meds I have to take, but I take them. I have side effects from those that make me very aggravated some days.

But you do what you gotta do. Nervous give yourself time to "accept". We have to "accept" many things in life, and many of them are unpleasant, unfortunately. :rolleyes:

life
 

Some of you talk about death and PN as causing death.
What I know is that road accidents also cause death... and some news - life is not forever. It is final.
We have to live the day, each day everytime and be happy.
Getting PN is a shoke - we learn to know that life is breakable. But we can die from so many other things.
I recomanded about some meditation, relax, CBT, mindfulness therapy ect.

I have small fiber neuropathy for 5 years now. Some here have it even longer.
I know that with new symptoms I also have new fear, but try to work on it.

Think positively and stuck only to the good information.

Calm at Last!!
 

New to post. I've had viral small fiber neuropathy for almost 3 yrs. To "nervous" I have to say 1)Exercise(i do water aerobics daily). It gives you natural endorphines to fight the pain. 2) try to keep stress and negative thoughts in check. Learn to meditate. 3)learn a craft with your hands.( i make cards for the military. )when the pains the worst i get crafting with my soft music on,it all helps.4)I keep sugar out of my diet also limit potatoes and tomatoes.
Last week i went to pain specialist at mayo. She was great and said this will not kill me, at present it is SLOWLY progressing. She gave me prednisone pack for 6 days in hopes of "setting it on it heals". IT WORKED!!!! i've been pain free for the first time in years. i'll enjoy it for however long it lasts and keep positive because that was my Docs. parting words. Keep the faith and sorry for the length.

nervous anyone who tells you that your PN will definitely progress until you are in a wheelchair or will get entirely better if only you do their decompression surgeries or take their miracle cure is at best misleading you and at worst trying to swindle you. Mrs. D cannot answer your question because there is no answer. No one knows if your PN will progress, progress for a while and then slow down, stay the same or get better. None absolutely noone knows this. Its all a crapshoot. I have progressed slowly over the last 9 years, but others with similiar symptoms have stayed the same, some have gotten worse and yes others have gotten better. Wings, Brian, Lizajane and Glenn just off the top of my head have improved or almost gotten totally better. Glenn's progressed from head to foot in a matter of days, talk about scary but he is doing much better now.

Others like Dan and Bob just keep slugging it out and not giving in an inch. They have both had it for many years now and Bob still runs his own business and Dan is as active as ever. Not bad for middle aged guys.

Do what you have to do to live life as fully as possible, create the best conditions in your body that you can to promote nerve health and possible regrowth and dont give in or give up.


Amit i all too well knew that life was breakable long before i got PN. I agree with your post.

78 is the new 40!

you are a slugger and have my respect.

Thanks echoes and everyone. I'm grateful to hear from you all.

Obviously, I'm saddened by the fate that's befallen me. (My rheumatologist, pen and notepad at the ready, wanted to know if I was "depressed." These guys are awfully simple, eh?) However, for the moment, I can still function and am not dependent on others, so that makes me more fortunate than some.

I realized recently that my foot cramping started a year before my shingles "diagnosis" and three years before my sm. fib. neuro. diagnosis. Also, for many years I've been wondering why my ability to walk has been impaired. I thought that I was getting flat feet or that I was developing something in my feet as a result of a poor post-knee surgery rehab. Now, it appears I was suffering from nerve disorder.

BTW, I was talking with someone today about Kaiser and their HMO. Right now, I'm with Anthem Blue Cross PPO. Anyone have any opinions or comments about health insurance? I'm trying to figure out how the make the money last and Kaiser is much cheaper. (Should I start a new thread?)

AHA Nervous! Shingles? That adds a new dimension to things!
 

I agree with almost all said above, but you answered my question before I'd asked it. That was: had you had any recent viral or bacterial infections such as the flu in the last 9 months? That is what set me off. Do take a look at this web site that others have provided? IF you can read even 1/2 of the med-speak? You mite find what you are after!
http://neuromuscular.wustl.edu/alfindex.htm Click on the blue? And read your way till your mind turns into either peanut butter or you have an AH-HA moment!
Mrs D and others are right that a calcium+magnesium+ViteD supplement helps? But don't expect it to work overnite? Give it a month at least... Once we get 'zapped'? We don't tend to asorb the goodies we NEED as easily as we used to. Supplements DO help? They take a while tho to 'feel' any changes... The FEAR of THE FEAR! tho is far far worse. Best you go and read the 'stickies' at the top of the forum, and then...read as much as you can asorb from all of us before now.... It can help give you a foundation on when to be afraid and when to just live! Both deserve respect? But I much prefer to try and to the latter. Tho I too go RED ALERT!! at times, no shame, no harm, no foul.
BTW? in discussing age--You are only as old as you THINK! To date? I'm NOT thinking OLD yet! :eek:!
Nervous, I hope this helps you to get thru the first obstacle in your diagnosis 'course'? Keep faith in YOURSELF to know that YOU need help, and docs aren't always perfect! :hug::hug:'s - j

I don't know if this helps, but I've been dealing with PN for 3+ years, and when it first started, I couldn't even mention it to anyone without breaking down in tears. Even though the pain is much worse now and even though I haven't found anyhing that alleviates the pain (except for Ambien), I find that I'm dealing with it emotionally much better these days.

I'm not sure what part of this you wanted me to read . . . or did you want me to read all of it?

Thanks.

Yes, Mrs. D, I know about the link between statins and PN, but I looked up the info and from what I could find, it looked like it's more rare than usual. I've only been taking the statin for a couple of years and had the PN for 11 and haven't noticed any change in my neuropathy. I am very aware. At 1st I didn't want to take the statin, my Dr. didn't know about it causing PN. He talked to me about the possibilities of heart disease problems of a diabetic....and then I read of the rarity. And I eat a good diet, it's not a diet issue, it's genetic, we have been able to determine that, I don't want to post all about that, it's late.

Also yes, my Dr. practically required me to take a combo of Omego-3 fish oil and Co-Q10 arranged by his office. And I'm taking Acetyl-L Carnitine 500mg. I didn't know about the ALC, just was taking that anyway....

There was one person on another website whose husband posted there about her and she died of autonomic PN. Her lungs gave out. I don't want to dwell on death here because I don't think it happens much either, don't really know. But Nervous asked about it, she wants to know, she's scared and I posted about it mainly to say that I don't think it happens much from PN! And that's great!! That's the good news! The bad news is that PN is annoying....and we already know that....and the hard thing to do is accept it Nervous and you will come to do that in time....as others have suggested.

Well, I don't want to speculate what will kill me. I have had a near death experience, trauma in my 30's and I am very lucky to have survived and watched my children grow up. I am thankful for every morning. (I am probably a bit less thankful at the end of each day, pain and exhaustion to get to me and I get crabby).

I would think tho, that the autonomic instability of my body won't be controlled and something will give out. Either an arrhythmia, catastrophic blood pressure event, stroke, kidney failure, or some dumb fall. Fact is, we are all mortal. I would love to die a contented grandmother at 96, but, that is unlikely. Frankly, a bit of denial is not a bad thing. I just try not to think about it, but I have my affairs in order.

I was utterly shocked to find I had PN. That was never a disease even on my radar. Neither was a near fatal car accident.....so, you never know what life has in store for you.

I figure I have lived well, I have no reason to believe I won't die the same way. Hopefully with dignity and with my loved ones there. I don't want to leave this planet by a longshot, but, when my time comes, it comes. Thinking about it gets me more morose....The human condition is dealing with mortality....the existential crisis.....keeping busy and having goals helps me overlook the inevitable exit awaiting me, and my loved ones.

Feeling needed is a compelling reason to stay on the planet....right now, I feel that overwhelmingly. (Some days, I wish I was a bit less needed....I miss my alone time!!! I never thought I would say that!)

I very recently had a go-around with my PCP about that.
It seems that in my file she noted that in the past, I had been 'depressed'. :confused:
I found out about it when I went into a stop smoking program that she referred me to. They weren't going to let me have Chantix because of the volume of intense literature that says that a possible side effect is suicide :eek: for patients with a history of 'depression'.
I've been thru the initial, frantic and upset period when fist Dx'd with PN, a son paralyzed, my business in jeopardy, (forced to relocate my business, or go out of business) personal problems of a general nature, etc, and dealing with PN on a daily basis-in the last 12 years (& have had PN for at least 5 or more ...before the Dx).
We had a discussion, & agreed....... to disagree. :rolleyes:
She agreed with me when I said "stress-yes!, anxiety-yes!, upset-yes!"
But when I said "but...depressed-never!" she & I argued a bit, and she noted in my file that I contradicted her ........ bottom line - she finally Rx'd Chantix for my no-smoking program. I start it next Mon with a quit date of Aug 1st.
Some mild depression can be expected when we are faced with the initial Dx of PN, and along the way we have set-backs, and 'low' and 'down' periods. :(
In the beginning, finding the right treatment and meds can be a daunting & frustrating task- but once you've found the right combination, and meds 'cocktails', you can get on with your life.:winky:
But don't let them label you with 'depression'. :(
If you are OK on a daily basis and keep fighting this PN, try to live as normally as possible, and have a productive life- you cannot be 'depressed'.
But you can have..... 'moments'. :rolleyes:;):cool:

That's ridiculous, and maddening! If she thought you were depressed, why didn't she talk to you about it before and suggest some kind of treatment? And I think that with all you've had to deal with, you've mostly sounded to me like you're managing pretty well. We'd probably all scream if we only knew all the stuff that doctors have written about us.

Good luck with quitting...if I could do it, surely you can!

Bob, I could not agree with you more. There are natural perfectly normal reactions to bad things that happen.

What...are we supposed to be happy we got this freaking disease??

Same with the troops coming home and PTSD....I see some of this as normal reactions to abnormal situations. It is perfectly normal that my son will duck for cover the rest of his life. The fourth of July was misery for him. He spent a year of his life ducking for cover to save his life.....he got hit once.....so...it is now ingrained. It is what it is.

I had a similar situation with my rheumatologist in a recent visit....I am not seeing her again....she does nothing for me anyway. I wonder how many depression discussions take place after a drug rep visits.

JoanB wrote " We'd probably all scream if we only knew all the stuff that doctors have written about us."

Joan im sure you are right on the money with this.

this post is not a reference to Bob's post in as much as he dealt with the GP about putting that he was depressed in his medical record and his record was amended to reflect his objection. for others if you who feel that there is or may be an inaccuracy in your medical record you have the right under HIPPA to review your file and to correct the inaccuracy.

Foot cramps
 

I know that this may sound like a crazy person is sending this to you, but my own MD recommends this, i.e, place an unwrapped bar of soap between your bottom sheet and your mattress pad. If you feel a foot cramp or a leg cramp coming on (or it's going full blast), slap your foot or leg on the soap. My some miracle, the pain will go away. I have recommended this to various people over the past three years and only one said it didn't work. She was positive it wouldn't before she tried it which may tell you something. One good friend got tired of being awakened by her husband three or four nights a week when he'd get foot/leg cramps. She put the soap in their bed and didn't say a work until about a month later he mentioned that the foot/leg cramps seemed to have gone away. He never would have believed it, but how is a total convert. Please try it. What can it hurt. Good luck!!!

Hi GolfPat and welcome:)

you may be interested in this 2008 thread related to the soap "treatment"
http://neurotalk.psychcentral.com/sh...ad.php?t=54740

I tried the soap....no luck. I make soap, so honestly, I can't figure out what would be in soap that would make cramps or neuropathy stop....lye?? Maybe if you hit me over the head hard enough with a ten pound bar of soap and then tucked it in between the sheets???

it seems to only be ivory soap that works...I dont have PN but used to get foot/leg and back/neck aches at night and since Mel posted about that, I have had ivory at the head and foot of my bed and never have night or morning aches anymore!

there was a follow up thread on it too:)
http://neurotalk.psychcentral.com/sh...ad.php?t=67745