This Small Fiber Neuropathy is unbearable :(
 

Hello Everyone,
I'm new to this forum and am in desperate need of help in dealing with this neuropathy. I'm 25 years old and first started experiencing tingling in both hands in February 2009. After numerous MRI's and an EMG, the neurologist diagnosed me with Small Fiber Neuropathy. By then I was experiencing burning pain in my upper and lower extremities, and at times, heaviness in my legs. I have had all kinds of blood work done and the cause has yet to be found (although I have kind of given up). I'm in pain 24/7, have very little strength to do anything, and feel like all my muscles are constantly aching.
I have difficulty swallowing pills, so I am taking Neurontin in the liquid form, but it isn't helping much. I'm on a low dose, but going any higher gave me severe headaches. I tried the lydoderm patch, but that didn't do anything for me. My neurologist said there really isn't anything he can do for me and referred me to a pain specialist.
I'm depressed, sad, and have begun to feel angry. I don't know what to do and at the same time feel that if I don't get this neuropathy under control I just may lose it.
A recent episode of really severe pain brought me to the emergency room, but even they couldn't help me. At times I feel like my entire body is burning.

I'm thinking of going to Mayo clinic's pain rehab program in Minnesota as a last resort at getting my life back. Have any of you been there, and was it helpful in managing the pain?

I'm feeling so hopeless right now.
Thank you so much for reading this.

Where do you live?
 

You may be able to go to a specialty neuropathy center that was closer to you than Mayo, such as Jack Miller in Chicago, Cornell-Weill in NYC, Massachusetts General, Jacksonville Shands in Florida, Johns Hopkins in Baltimore, The University Of California at San Francisco Med Center . . .

Also, can you tell us what type of testing you've had? It's been the experience of many of us that unless one is under the care of a really savvy neuro, or at one of these kind of centers, the work-ups for possible causes of neuropathic symptoms can be patchy or incomplete--doctors just don't know--which is why I often recommend the Liza Jane spreadsheets (very good for tracking test results over time and suggesting others to doctors):

www.lizajane.org

As well as the Poncelet protocols:

http://www.aafp.org/afp/980215ap/poncelet.html

And this listing of serological tests for neuropathy causes put together by Dr. Norman Latov at Cornell-Weill and Quest diagnostics:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

I understand, totally! My neuro answers all my questions and is amazing at testing and very informative but he keeps me on the same Medications. IDK what to do!

In the same boat !
 

Hi Miriam! I'm new here too and certainly relate to your feelings of 'hopelessness' !
You sound exactly like me (but I'm 20 yrs older :deadhorsebeat: )

In some of my initial diagnostic workup, it was discovered that i had hyPOthyroid, which contributed to alot...so i figured once i got that under control with medications i'd be good to go. WRONG Neuropathy is the most mysterious and wicked curse I have ever known !
After 5 years and thousands of $$ worth of ruling out everything else, I have come to the conclusion that there IS no conclusion! To me, first and foremost has been hooking up with other people who understand and going thru the same battles......once you've hooked up and realize you are NOT alone, then comes the serious homework.....look on the websites that people share on this forum, read other people's stories of tribulation and triumph. TRY to have some semblance of humor....and hope......and eventually we WILL have our own story of triumph! i hope....:Viking:

Please hang on to hope......
God Bless
Rae

Thank you all so much for your replies!
Glen, I live in NY. Dr. Latov at Cornell is actually the neurologist I am seeing and he kind of gave up on me (at least that's how I feel). The reason I am thinking about Mayo Clinic, is because they have a 3 week pain rehabilitation program that sounds amazing, at least in theory (you can check out their website), and I haven't been able to find a comparable one that is closer.
However, I haven't been able to find anyone with neuropathy that has gone to this program, so I don't know how effective it really will be to help manage neuropathic pain.

Joshua, how are you feeling with the meds that you are currently taking?

Rae, thyroid was tested and found to be normal. I'm sorry that that didn't get rid of the neuropathy for you. How are you feeling these days? Have you tried any pain management center?
I wish I could have some humor, but as each day passes, and my hope to live pain free decreases (or at least with some less degree of pain), it gets more and more difficult to put on a show for others and go with the flow.
I have two small children, a wonderful husband, and I just feel terribly sorry for them for having to live with someone with issues like mine.
I haven't hooked up with anyone who has neuropathy, and as much as a good friend/co-worker of mine tries so hard to understand what I'm going through, there is no way I can expect her, or any other healthy individual to be able to understand what kind of hell I'm living in.

I am currently seeing a psychologist because if the physical pain isn't enough, I am depressed on top of it all.

Wish I could be as optimistic as you (and some days are better than others in this area), but today is just not my day :frown:

Sorry
 

I am just so sorry for someone so young as yourself to be dealing with this crummy illness. I hope you find success with some form of treatment to ease your pain. God Bless you.

jakatak ... thank you.

I'm sorry you are feeling this way as well. This whole nasty thing comes on as shock after shock until you realize all the things you are wondeful new things your body is doing. I think you are well aware of everything now and you are feeling overwhelmed by it as I did. The biggest bit of advice I can give is to find your triggers. What makes your pain worse? I know that sitting a certain way or reading with my head down, or the worst: sleeping on my stomach, elicits the symptoms. As well when I press too hard on something, like typing for a long time starts to agitate things until I start twitching or start getting the electric zaps.

Is there any way when your symptoms occur, that you can think of what you might do that coincides with the pain or uncomfortable? Another example, I noticed when leaning over many times I would start to twitch feel pain and get burning sensations in my limbs. Likewise, I used to be able to exercise without much problem besides some persistent leg pain. Then all this stuff and I had to learn that when I started feeling a certain way, it was time to quit or slow down or adjust. If you can tolerate it, I would get off the meds for a couple days and figure out what your triggers are if possible. Neurontin blunts pain sensations, so you can't get a good map of this without going cold for a day or 2.

As far as taking Neurontin, I had problems as well(made reflux worse, brain fog, other problems, etc). So, I started researching herbal alternatives and found the herbs: Bacopa and Gotu Kola. I took these in tandem for the better part of a year and my depression lifted and was able to think clearer and recognize and work around these triggers even better. Both of these herbs stimulate the neurotransmitter Gaba like Neurontin does, but in addition increase Acetylcholine(good for nerve rebuilding) and Bacopa increases Serotonin(good for Depression) and increases endogenous levels of Antioxidants SOD, Catalase and Glutathione. As well I started using Magnesium Oil(helps build and repair nerves and function and is a muscle relaxer, increases ATP cellular energy, the list goes on and on.) I also take Taurine(increases Gaba, reduces inflammation, detoxicant)

Antioxidant therapy for us is important(what the doctors won't tell you). What I think you eventually want to start taking maybe in tandem with other herbals is R-Alpha Lipoic Acid(the best medicine to treat root of neuropathy)and Acetly-L-Carnitine(increases acetylcholine and cellular energy, most powerful nerve rebuilder). PM or respond and I can give you more information if you need. I think it is ridiculous that doctors don't have any of this information and let people suffer.


This is just from my own experience and research:

In terms of importance for Small Fiber Neuropathy:

R-ALA
Acetyl-L-Carnitine (ratio is 2 to 1 acetyl to ala) (don't take acetyl-l without R-ala)
Magnesium Oil
Fish OIl(get a quality one)
Taurine
Gotu Kola
Bacopa
MSM(detoxify, pain)
B-12
Multivitamin

OH dear! This all is SOO not much fun to have?
 

AT ANY AGE!!!!
I've had it for 6 years and the great 'guru's aren't always the ones you need NEAR you to treat you? I've seen area wide GURUS AND Local 'gurus' and I gotta admit that after seeing over NINE neurologists? #'s 2 &3 were the ones for me. I got diagnosed IN TIME for an auto-immune condition the first 2 neuros wrote-off to other issues...not realizing that those other issues were a RESULT of the primary one? AND, I kid not! The diagnosis of 'mere' PN was 'found on the internet' BYthe ER DOC! That he said no more than 'I found your problem on the 'net' and I know what to do...and not tell me ALL he found? I'm not a happy camper for the long term. Especially as delayed diagnosis created additional and unnecessary medical problems. Some of them permanent.
Miriam, I am saying this not to scare you, but, with your swallowing issue? [I too hate huge pills?] I think you mite be doing good to get another neuro opinion. Second opinions are cheap compared to total LIFE? Golly, be safe w/another opinion, not SORRY!

Keep at the diagnosis! Keep faith that YOUR BODY is saying WRONG! a LOT?
Keep HOPE that you will find THE doc to help YOU as a person. I was lucky, and super persistent in keeping at finding out what-the-fundge was going on with me? While I could! You WILL Find that doc! I have faith in that and in you - :hug:'s - j

Hi Miriam Im a New Yawker also from across the river in Long Island City.
There are many medications to take for PN pain and individual ones work for some people and not for others its a hit or miss. Titrate up titrate down its a real PITA. Its important to find a neuro that you can work with and who is up to date on the latest treatments for PN. I have heard less than overwhelming praise for being treated by Latov both online and from people in the NYC area who are or were treated by him. In all honesty to me he sounds like any other schmuck neuro who loses interest after a few tests and passes you off to pain management. There are all too many neuros out there like that. From people ive spoken to if you arent a candidate for IVIG he loses interest. A pitfall of using a research oriented medical center. If you dont fit into their interest they lose interest. There might be a better neuro for you there at Cornell. Glenn knows them you can ask him.

As far as other people knowing about what you are going through, in another thread Melody has posted about a support group for PN that meets in midtown Manhattan the third thursday of the month. There you can meet and talk to other people in person who know something of what you are going through.

Dont feel guilty about your children, im sure you are doing the best you can and as someone who as a kid had a mother battle hodgkins back in the 60's for five years believe me they are happy to have you.

A few months back i started taking Elevil (amitriptylene) at night for throbbing and burning pain at a low dose 25 mg and it has helped with those pains and also to go to sleep and stay asleep. They are very tiny pills.
Oh yeah do you have any idea of the cause of your PN? Take care and hang in there.

It is great to see all these peeps reaching out!
 

Believe me, Miriam, I DO know the depression thing. My heart is screaming out to you.....the hardest part of it all is the GUILT that goes along with this... I hate what i've become to my husband.....my kids are too young to comprehend the true scope of this battle, mainly because i tend to 'hide' away in my room so my saddness won't 'show'.... I've turned my friends away because i'm too
embarrassed to be this way. I used to be a fun and outgoing person. This crap has completely devastated my entire life.......
I'll be point blank honest, i have entertained the thought of ending it all, but could never bring myself to actually DO it......so i thought of the elaborate plan of hiring a hitman to do it FOR me......now how awful is THAT.:mf_swordfight: oh the battles within! And then of course comes all the SHAME and self-hatred for even thinking these things! I've beaten myself up emotionally because of how selfish and degrading the thoughtlife can get....
I could go on and on, but i'm sure you catch my drift....
i guess my point is to let you know that YES this PN crap can completely take us down.......I'm so glad you are reaching out for professional help emotionally as well as medically. That right there shows what strength and determination you have to fight this thing. You're doing it for your family. I will be praying for you please know that.
I've been known to try and 'hide' behind humor when actually i'm more down than ever before, so maybe it comes across as being too 'lighthearted' i suppose.....:Ponder: i must admit tho....these 'smilies' are fun to play with :Popcorn: but i guess it's just that i've spent wayyy too many days living in a black hole and feeling as tho life is over....

Yes, i've been in a pain clinic (2 actually) for several years and i'm right around the corner of making the most drastic decision i've ever made.....getting the spinal cord stimulator implant.
I know the pain is the worst part...and you said you don't like pills.....have you considered the 'patch'?? That's the only thing that has kept the pain at bay to where i haven't totally lost my marbles.....but i'm tired of opioids cuz they have their own negative perks, thus my decision to bite the bullet and get the SCS implant. Whatever it takes to take away the pain.....that's what the meds are for....
well, i've gone on enuf....i've never spilled my guts to this degree before, but your posts have really struck a chord....plus you being so young.....
SO not fair.....
Vent all you want.....that's what this is for...

Keep the Faith
Rae

A quick footnote Miriam....
 

As i re-read your first post i see that you DID try a patch (Lidoderm). I am referring to the Fentanyl patch.....very powerful opioid. They come in all doses. Maybe your doc would be open to try you on it. It helped me to say to the doc that "My pharmacist said to ask you...." Some docs don't like to be flatout asked for opioids. But you truly are suffering and that's what the dang meds are FOR. I hate uptight docs when it comes to pain....
Another thing, some of my issues are 'female' related .....hormones and such....
feel free to send me a PM and we can talk on more of a girlie level without the world wide web reading......
Also, consider asking about glucose levels and metabolic neuropathy......they play an important role in finding the underlying cause so hopefully not to have to take strong meds for too long.......
At first i 'poo-pooed' those terms, but turns out they may be right up my alley....

Truly caring....
Rae

From the perspective--
 

--of someone who's gone to Cornell-Weill for a long time, I think part of the problem with Dr. Latov--who I've had interesting discussions with, By the way--is that he runs the research arm there, and most of the research is dedicating to metabolic (e.g., diabetic) and autoimmune forms of neuropathy. (He's also getting older and suffers from a likely autoimmune neuropathy himself, so that may factor in.)

As for clinicians, I'd probably go with one of the other people running around there if you can (Dr. Chin is my primary neuro.)

I will say, though, that the Cornell Weill people were among the few that didn't treat me like I was a weirdo--or a psychiatric case--with my acute onset body-wide burning neuropathy symptoms, which too many other neuros had.

I'm sorry if you did not have the greatest experience there. It is certainly true that far too many neuropathies show negative on all reasonable tests and remain stubbornly "idiopathic", though hereditary, metabolic, or autoimmune mechanisms are often suspected in those.

There IS hope to be found !
 

Miriam
I'm sure you are aware, but just in case you're not....there are VERY positive threads and posts in the stickies at the top of the PN section....especially the one entitled "Neuropathy DOES improve".....
I keep a notebook handy and jot down the herbal cocktail suggestions, Liza Jane charts are good to print out and incorporate it into your own personalized 'journal' of your battle, and any other pertinent prospects of improvement....That way, you'll feel more organized as oposed to overwhelmed. Keep notes of people's successes, even if they don't actually work in your case....this way you're building up a battle plan to stay above the depression cloud that constantly tries to bring us down. Make notes of websites that seem to target your symptoms.....just ANYTHING to stay afloat.
This thing will NOT get the best of us !!!! Amen ?
Ok, i'm outta here....for now
Gotta run.....the kids are hungry ! :OuttaHere:
As always
Rae

Thanks guys. There is so much information out there, and a lot of it may be good information. I just ... how do I put this, have zero strength right now to research any more. I know this probably makes no sense to most people. After all, if there is something in those stickies that could potentially help me, shouldn't I be interested in reading it and jotting things down? At this time (maybe the depression is really getting to me) I have just about given up, even though I know that there is absolutely no way I will get better if I have no hope. I'm making no sense with all the above, I'm sorry, I'm just having so much difficulty concentrating right now.
Thank you all for your replies.

Glenn, how have you been helped by Cornell? Are the meds that you are taking helping you? How long have you had the neuropathy for and what are your symptoms? I have yet to find (and hope I don't) someone who is experiencing this burning pain, and very achy muscles in their entire body. It seems that most people either have burning feet, toes, or some small part of their body (and I don't mean to minimize anyone's excrutiating pain). It's interesting that you mention Dr. Latov having neuropathy himself. Has he told this to you?
Again, thanks everyone :hug:

Miriam, some of your depression may be reactive...and some may be due to the Neurontin you are taking. Have you discussed with your doctor, taking an antidepressant? Recently there have been newer studies on Elavil showing that this TCA antidepressant can actually help heal at the peripheral level. Other antidepressants did not show this trait. Elavil may be something to consider.
Here is the link to that thread:
http://neurotalk.psychcentral.com/sh...=amitriptyline

Have you had tests measuring your Vit D and B12 levels? Both help with recovery. Low Vit D has been shown to increase chronic pain.

I second Mrs. D's suggestion for a trial of Elavil--
 

--which has certainly been useful for many for both it's neuromodulative (pain dampening) properties and its anti-depressive properties.

I am currently on no meds at all, having weaned myself off gabapentin two years ago (at one time I was up to 2400mg/day, but I'm a big guy)--I was lucky it worked for me at the height of my acute-onset (hours/days) body-wide burning neuropathy attack, of which the only evidence was small-fiber de-enervation upon skin biopsy through Cornell-Weill, which still follows me as a case and has tracked me with subseuqnet skin biopsies that show slow but definite re-enervation. (A presentation like mine is rather rare--there is a researcher at Hopkins, Dr. Abhey Moghkar, who speculates such acute-onset body-wdie syndromes, of which he's encountered about a dozen, involve a selective attack on the dorsal root ganglia, and are sort of the small fiber equivalent of Guillain-Barre syndrome.)

I'm on a lot of supplements, though--vitamin D3, methylcobalamin B12, B-comples, magnesium citrate, R-lipopic acid, lots of fish oil.

My daily symptoms now have more to do with an unrelated right side cervical (C5-C7) radiculopathy, secondary to a rhomboid muscle tear and hypertrophy of the spinal processes--the tingling and numbness in my right hand/fingers/arm is very different from my original burning symptoms. I may have to bite the bullet and get a foraminotomy one day soon. I also have a pelvic/sacral twist, and a left leg two cm shorter than right, which tends to result in impacted nerves in the sacral/sciatic distirbution.

I am still prone to flares and very vulnerable to compressive symptoms, though. Some of this may be due to the fact that as I've slowly re-enervated (my original neuropathy "attack" was quite acute--hours--and peaked over some months, then began to recede--it appears to have been a monophasic event), the fibers grow in different configurations than they were originally, working around muscle and bone, and so are easily compressed. I get tingles/shoots/electrical things that start up suddenly, hang around hours/days/weeks, then depart just as suddenly. Sometimes I get these after exercise--even engorged muscles can set them off.

What Cornell-Weill most gave me was a comprehensive testing framework, very thorouugh examination (I've never has less than a half-hour appointment there, and my first intake appointment ran two hours, with the physical being the most comprehensive I've ever had), referrals to other specialists (met a great endocrinologist the Center collaborates with in research who has an interest in neuropathy), the ability to do skin biopsy, and the sense I was being believed--too many doctors before that seemed to think, with all the "normal" test results--very common in small-fiber syndromes--that it was all "mental".

It is true that I'm an interesting case for them--and that my knowledge of the field and the research (all self taught) is on a par with the docs there--probably why I get to have these discussions with Latov, Sander, Chin, etc., and yes, Latov has mentioned having symptoms of vasculitically based neuropathy. (He's not the easiest person to talk to, but I can say things like " how did your work on nerve autoantibody lead to the development of your ganglioside agglutinin test", so that may be part of it. And they're used to seeing me around there for follow-ups, subsequent skin biopsies, and the like.)

Currently, my original neuropathy is considered to be slowly resolving, though I don't know if I'll ever be symptom-free (the research literature that there is on this type of presentation, admittedly sparse, does not seem to indicate full recovery). I'm still officially idiopathic, though post-infectious autoimmune molecular mimicry mechanisms are the leading theory for what happened.

Some questions:

Do you have Acid Reflux as well? When do you burn the most? Can you discern any rhyme or reason, bending, stretching the neck, twisting the hips that aggravates or makes it worse? When you wake up in the morning, do you wake up burning? When does it start? When does it stop and can you do something to make it stop? If I stop moving for awhile and either sit or lay down it slows and will eventually stop. If I lean over and or lay down on and put pressure on my stomach, it goes crazy and hurts bad. Looking down for a period of time or craning my neck to one side or the other fast will(feels like tears something in neck) and then symptoms. Is there any pattern you grab from this. I found my pain worse on Neurontin because I was ignoring all my triggers and doing stuff that kept the condition aggravated. Have you tried Alpha Lipoic Acid and Acetyl-L-Carnitine?

Glenn, you spoke of one leg being shorter than the other. I have scoliosis, and always had a lot of back pain. While going for therapy after knee surgery, my therapist suggested I wear a heel lift to bring my pelvis level. That was 4 years ago, and it has worked for the back pain. My daughter-in-law also has scoliosis and back pain, and she now uses a heel lift to get relief. (I even have one in my slippers) Joan

Yup--
 

--we've been experimenting with lifts on the left side.

Been using different thicknesses and "sponginess/give" levels, trying to find an optimum situation. One thing that's annoying is that the lifts tend to move around in the shoe as one walks, not staying that well under the heel, and I've been trying to rig a velcro or other non-permanent fastening system for that, as one doesn't want the lift permanently attached, so one can shift it into different pairs of shoes.

MrsD,
A while back I got a prescription for anti-depressant from my doc, but never took it. Now I see that I may really benefit from taking it, so I need to speak with my doc again. The prob is, I have days that I'm so depressed I cannot handle it, don't know what to do with myself, etc., and I have other days that (for the most part) I don't feel that I need the anti-dep, which makes the situation all that much more confusing.
Does Elavil come in a liquid? You see, the prob with me taking other medications is that most don't come in a liquid and I have real diffculty swallowing pills (And if anyone here can help me out with that, that would be great :))
I did have vitamin B12 checked and I was slightly low. Doc gave me the pills which I somehow managed to swallow (they were really tiny), although it took a lot of effort, for close to 2 months, and then kind of stopped it. The same with B6, was taking those as well (my B6 levels were even lower than B12). I know B12 comes in a shot, and that maybe something to consider, but I don't know about B6.
I have to check if my Vitamin D was tested.
Thank You!

glenn,
Thanks for writing. Sorry you have so much going on, but glad to hear that you have most of it under control. I never did the skin biopsy. Dr. Latov said that the results can be negative at times, even if someone may be experiencing all the symptoms of small fiber neuropathy. So I figured what is the point of actually doing it? Whether the results are positive or negative, I will still need to be treating the same symptoms. What are your thoughts?
It's amazing that your neuropathy seems to be resolving, even if it's resolving slowly. I hope it continues this way for you until you are neuropathy free.

aeb105,
Thank you for writing. Other than stress, I cannot figure out what causes the symptoms to get worse, or slightly better. There is never a time that I am pain free. My body aches all over and I feel burning specifically in upper and lower extremities, although quite often it feels like my entire body is on fire, 24/7, but the burning may become more or less severe at times, although I haven't been able to figure out what makes it burn more/less as much as I tried. I know lying down is sometimes worse than when I am active, doing an activity and keeping busy, but that is not always the case. I was thinking that maybe when I'm busy with other things and try not to focus on the pain so much, it seems better, but when I'm lying in bed, I tend to concentrate on the pain more, although I'm not sure.
I do wake up in the morning in a lot of pain, burning all over, feeling really achy in all my muscles. At times, this improves a little as I beging going about my day, only to once again sting me a few hours later. In short, I'm not sure what is causing the symtoms to getter better or worse, but I'm always in pain.
I was recently diagnosed with erosive gastritis as well, and am currently taking medication for that. But that has gotten much better already and I feel that it is the least of my worries right now.
I have not tried Alpha Lipoic Acid and Acetyl-L-Carnitine. Are these pills? Do they come in liquid? Can they be dissolved?
I have great difficulty swallowing pills :frown: which prevents me from trying various medications.

I started out that way too. Now I have a heel lift in every pair of shoes just for the convenience. You can get them sometimes in those catalogs that come to every senior citizen's house that offer everything! Sorry, flip-flops are out however! Joan

I had the same and I think some of the burning was because of that. If you are on Prevacid you need to be taking B-12 and other B vitamins because Proton Pump Inhibitors drain your body of these vitamins. This in turn will make the burning worse. I didn't know about this and was on Prevacid as well for about 1.5 years and found that once I got off, things got better. You can take DGL Licorice and Marshmallow Root to ease and get rid of Gastritis.

Alpha Lipoic Acid and Acetyl-L-Carnitine are pills that you can take, you can get them from Walmart. Actually just buy the Walmart brand of Alpha LipoicAcid/ Acetyl-L-Carnitine and see if you can tolerate it. If you cannot, like me let me know and I will tell what else might be beneficial.

For the ups and downs you need to take fish oil at least once a day. This will balance your swings and raise you a bit. I also take Taurine because it has a balancing effect as well. These things you can get at Walmart. I don't swallow pills well either, but I know that having some releif and making my problems better is the best path. My throat feels scarred and to get around problems with the pills, you can take with yogurt, or some kind of food and then a drinik. You will get good at padding the pills with food and making them go down easier.

Magnesium Oil might help with the burning as well. I order Swanson's Utra Magnesium Oil Spray. In addition, I take Gotu Kola for the a bunch of reasons related to neuropathy. Bacopa is the one I took when I was pretty depressed. You can get them online or at the Vitamin Shoppe. These are just some of the things that I do that help. Let me know if you try and if it doesn't help can make other suggestions. A lot of this is experimenting and finding a regimen that works, is healthy and is tolerable.

there are liquid forms of both alpha lipoic and r lipoic acid as well as acetyl l carnitine. if you do a search for that on the internet several sites come up for each. you can also get methycobalamin b12 from jarrows and leave it under your tongue or chew it so you dont have to swallow it. Amitriptylene (elevil) is a very small pill. Wellbutrin which is also an antidepressant and a very small pill worked very well on my nerve pain.

I too can't swallow horse sized pills so I try to buy gel caps or liquid forms. I use Wellesse liquid calcium w/ vit d...it's quite palatable. This is a must for me for leg cramps. I also use liquid L carnitine. Got both from Iherb.

I had some citracal pills and they were so gigantic, I crushed them into powdered form and because they were so gritty, I sprinkled them on applesauce and swallowed them that way. If I can't see the size before purchasing, I avoid tablets and look mostly for gelcaps.

I use Maalox multisymptom for my calcium:
It is instant dissolve--just chew them up and they turn into easy to swallow "mush". Each one is 1000mg of calcium carbonate.
They are very inexpensive at WalMart.

Miriam--
 

--agreed, one can have a small-fiber neuropathy and not show signs of small-fiber de-enervation on skin biopsy according to the MacArthur protocols, which define signs of de-enervation as intraepidermal nerve fiber density below the 5th percentile that was determined by norming it on a fairly small sample of people not suffering from neuropathy. There is considerble variation in people's small-fiber density, though--for one thing, it tends to naturally reduce as we age--and sometimes, since there would have been no reason to do biopsy to enumerate the fibers prior to symptoms, one could have shown a significant drop from what one's "own baseline values" would have been and still not drop down below the fifth percentile, and therefor get a reading of "normal' nerve fiber density when it fact they may have personally have experienced enough of a drop to have symptoms.

But--this is important--even with normal density ranges--the biopsy can show excessive branching and selling of the fibers themselves, which is definitely indicative of a neuropathic process. That may point to a small-fiber neuropathy diagnosis even without being below the fifth percentile (I certianly had this). Often in that case one has caught the process at a moment before one has dropped to "abnormal" levels, and a follow up biopsy might show even lower values.

In my case, for example, my first skin biopsy showed I was at the second percentile for intraepidermal nerve fiber density at the ankle and about 4% at the thigh, but if I'd had a few more fibers at the thigh that reading would have been normal. A subsequent biopsy 18 months later showed that I had started to re-enervate; then I had reached the 11th percentile at ankle and 12th at thigh, which is technically a "normal" result. But, of course, I still had some symptoms, and it was obvious I had suffered considerble de-enervation at a prior point. But at this point, I was not showing nearly as much swelling and damage of individual fibers.

My sense is that my original starting point, before all this, would have been at a much higher percentile (30? 50? 70? No one will ever know; there was no reason to get a biopsy then), and I did experience a major dimunition of fibers. I am unlikely ever to get back to my original percentile, but may re-enervate enough in time (re-enervatioon can go on for years if one has overcome the original de-enervation process, and doesn't start another) to have minimal symptoms, given that I continue to keep my blood sugar in check, take healthful supplements, etc.

I will always be thankful that I did show an "abnormal" count--it was the only unequivocally abnormal test I ever had in the whole investigatory process and provided evidence that this was not "all in my head"--an all too common designation too many of us have been slapped with. It's for that reason alone at times I would recommend the procedure, if one can get it, insamuch as it is not invasive or difficult--a few shots of Novacain/Xylocaine, a few 3mm samples taken, a few band-aids, and you're done--and if it does show abnormality, while one hasn't found a cause, one has documented that the symptoms are caused by something "real", which gets a little more respect from doctors, pharmacists, SSI boards, and friends and relatives.

Miriam...

The Elavil used in 10 or 25mg strength are very tiny tablets.
You can put one on applesauce and knock it back without even feeling it. The doses used for PN are really not high enough for antidepressant actions. Most doctors use Cymbalta (but this drug does not have supporting evidence to help heal peripheral nerves) now for people with pain/depression issues.

The larger doses of Elavil are larger tablets, approaching a regular size aspirin. They are all coated so they slide down easily.
Larger doses are not usually given.

I'd get that Vit D tested. Studies are appearing now, that Vit D can reduce need for pain medications. Most people with chronic illness are low in D. I have videos on our Vitamin forum ...the links are in the sticky at the top of that page. Low D is also a factor in depression.

what was your TSH? was a complete thyroid cascade done?
how long after the last little one was born did this situation arise?
have they done any testing for viruses?
have you been thoroughly tested for Lyme disease?
many meds can be crushed or capsules opened....not all though, check with pharmacist.....good luck

Thanks everyone for your help.
Will reply to you all when I have a little more time.
Slept only about an hour and will try to sleep now ... can't seem to stay awake.

pills pills PILLLLLS !!
 

Your head must be spinning huh Miriam! :mfr_wha: You're getting an avalanche of info here !! Some goes wayyyy over my head.... but i hope you are able to comprehend better than i.
I'm so frustrated! I had typed you a nice long post day before yesterday and somehow lost it ! grrrr:icon_eek: Now i can't seem to 're-elaborate'....
Something to do with asking you if you can think of anything ANYTHING that could have triggered your pain back in Feb. Any kind of injury or insult to any part of your body. Reason i ask is cuz my ordeal started suspiciously after i had fractured my hand (kicked by horse). The hand healed fine, but the burning bilateral knee/leg pain started when i was trying to make a comeback and i had joined a gym and was walking 100 miles/month on treadmill. Well, stupid me. Looking back, it's plain to see that i got too ambitious and overdid what my aging body was capable of handling. Neuropathy set in bigtime.
I've since found out that alot of these burning pain symptoms can set in as 'referred pain' from an injury (or even something as small as getting a vaccination shot) because the central nervous system reacts (the 'fight-or-flight' thing) and goes into overdrive and nerves start misfiring everywhere......this may fall under the catagory of RSD more tho......I've been told i have both.....
Just try to think of anything that might have happened back in February (is that when you started on that new medication?
Anyway, you've been getting asked lots of questions - not that you have to answer them all - just ask yourself the Q's and be a detective

But yet i DO understand that when the depression cloud has you bogged down, it's hard to get the strength or ambition to even TRY......maybe just try and line up your issues in a single-file line and try dealing with them one at a time....which comes first - the chicken or the egg? :holysheep: That's exactly how pain and depression are.....bleah.

If you can at least get something to help you not feel like a pendulum ....something that keeps you evened out emotionally (more pills?! :Hum:)
then you'll be able to deal with a battle plan with your armor on straight.
Mucle relaxer or Xanax is an instant bang for your buck, if you're afraid of committing to an anti-depressant just yet.... Find out from doc which is ok to crush up and use. Makes perfect sense - you are all tensed up physically and emotionally because of the pain.
Anyway, gotta go.....
You've started a heck of a good thread here and you're getting so much good advice....everyone is really pullin for ya :Demonstration: and that is so
fantastic!
As always,
Rae

Thanks everyone
 

Just a vent:
I wish it was so easy for me to take all of these meds/vitamins that you are so kindly suggesting to me. I feel crazy that it's such a struggle for me to take medication, but I'm gathering all the info that you guys suggested and will try to start with one thing at a time.

aeb, echoes, antonina, Mrsd ... you gave so many wonderful suggestions, thank you. I will look into what you suggested.

pabb, my symptoms started about 11 months after my little one was born. I did have my thyroid tested, and was tested for lyme as well, but I'm not sure what you mean by thoroughly ... I would hope they would test it thoroughly! :) What is TSH? I'm not sure about specific testing for viruses ... need to check all my records and ask Dr. Thanks for posting your message.

glenn, I have been to a total of 3 neurologists, with Dr. Latov my third. My first neuro told me I'm stressed and I need to relax. The second neuro, though, was the one that did the comprehensive exam, EMG, blood work, etc. and diagnosed me with Small Fiber Neuropathy. I went to Latov because after learning he knows a whole lot about neuropathy, I was hoping that maybe he could help me out in a way that my second neuro wasn't able to, but Latov pretty much echoed what the second neuro did. So as far as getting the biopsy ... I know I'm experiencing symptoms of Small Fiber Neuropathy and I'm okay with knowing that without the biopsy for now. If I do feel at a later date that I would like to have this biopsy for whatever reason, I will definitely look into it. The only person who I would really love to get the biopsy for is my mother ... she is in complete denial and thinks I'm in all this pain because I am tired :winky: ... but if the results come back negative ... I will be in hot water :)

rae ... my head is spinning, but I'm hoping to gather all the info from everyone's suggestions and use it. Something about a person being depressed and not able to make appropriate decisions ... I think that's me at this point. Thanks for writing the message, even though you lost it in the end.
I'm sorry to hear about your situation and how you think your neuropathy started. Here for you so don't be afraid to vent away :hug:

Today is actually not a good day in terms of my pain .. I'm in incredible pain all day today and all I can do is wait until this intensity decreases. I will try a hot bath later ... at times, I feel a little better while I'm actually taking the bath, although as soon as I come out ... we're back to square one.

Thank you all so much for your help both practically, with your wonderful suggestions, and just by listening to all of my vents. I really appreciate it.

Miriam

Hey Miriam !
 

Hi ! :D i wanted to 'revive' your thread cause it's such a good one.....

Thought i'd share this and maybe it'll kinda work for YOU as well !
I've suspected throughout my 5yr battle w/PN (after ruling out practically everything else) that MAYBE my ordeal DOES have to do with my 'carb' intake. I know which are the good and bad carbs, but i've never had the self-discipline to actually stick with a good healthy plan for very long....well, i've been on a pretty strict diet that centers around the glycemic index stuff and it's only been a week, and i've got to say SOMETHING sure is happening.
In a GOOD way !! Or maybe the supplements i've been taking are kicking in, or both....but i started the B12 regimen from the 'stickies' at the top of this forum amongst the other main ones, and my pain has dramatically reduced.

I'm not quite sure what to think - it seems too soon to get my hopes up because i've had 'up' moments in the past only to be back to square one with the pain levels.....but i dunno man ! Something seems to be changing....

Give it a try - there certainly is nothing to lose! (I know you love cake so don't hate me) :p but try going for a couple of weeks just eating a strict regimen of the 'good' carbs only.....no cake, no cookies....no sweets.....
no fun! But hey! You could possibly save yourself THOUSANDS of $ in medical bills ruling out other issues JUST by changing our eating habits!

Just thought I'd throw this out there.....
Hopefully more knowledgable ones will come along and expound on what i'm trying to say.....i'm not too good at talking the medical language but i DO NO that glucose levels (pre diabetic conditions), and glycemic index and/or possibly glucose intolerance DOES play a roll....

It's beginning to make a a believer out of me PLUS i'm losing some of the weight i gained on stupid meds (like Lyrica) that has backfired on me....

Later my friend!
Rae

I don't want to rag on this issue, but, interdose tolerance or tolerance withdrawal of ANY benzodiazepine will cause burning. I went thru it. Twice. (Yes, I am a moron.) Six weeks out from quitting, I still have odd burnings all over, especially the mouth. How much of this is disease or due to drugs, I can't know. Now I have to monitor my condition by just looking at labs. I imagine this will go on for up to 6-12 months, a little fact docs don't tell you when they give you the benzodiazepine.

I don't know if you are on one, but if not, really think thru going on one.

I am less adverse to opiates then to benzodiazepines. An opiate you can get off of with far less disability.

Also, you can't just go on fentanyl, you have to be acclimated to opiate use. Back when my doc put me on fentanyl from hydrocodone and did I get sick! You have to be on a substantial dose of oxycodone to up to fentanyl. My system shut down on fentanyl and I got Paradoxical Pain.

Have they tested you for all the antibodies?

so familar
 

i am so sorry. i feel for you. 20 years ago i began to have the exact symptoms. it began with burning and tingling in my feet, then increased in both legs and feet, eventually in arms and hands. NO doctor could diagnose me even though i had history of a tick bite. i went 5 long miserable years undiagnosed with lyme disease. by the time i was finally treated it was too late to stop the nerve damage and i have now lived with the neuorpathy 20 years.

has any doctor mentioned lyme? i was diagnosed with everything under the sun, all wrong. the lyme was able to invade so many systems in my body...CNS, bones, heart, i even have some nerve damage in my inner ear area so i deal with a lot of balance issues.

you sound exactly like me 20 years ago. i am so, so sorry you hurt like that because i can and do relate.

if someone has already mentioned lyme i am sorry. i think i read most of the answers but may have missed some.

kathy

Newbie
 

Hi All,
Im very glad i found this place and have been able to read everyones responses. I am 35 yrs old and was diagnosed with SFN one year ago but have been having symptoms for about 3-4 yrs now. I have been to several doctors and am about to leave for a pain mgmt clinic in a few mins. I even saw a Dr at Barrows Neurological Institute who said to me when i asked what causes this, "well buddy, its just one of those things where life sucks". That was the last time I saw him. I have tried countless medications including neurontin, cymbalta, lidocaine patches, lyrica and pain meds including oxycodone, tramadol, butrans patch, nucynta, vicuprofen..etc. The only thing that has had any effect in which i can tolerate is oxycodone. I have read that many people take the gabapentin/neurontin, but of course when i took the lowest dose, i woke up with the room spinning and throwing up. On the lowest dose!! It has been very frustrating to say the least. And i have a very understandable wife and two little girls, but it pains me to see their faces when i have really bad episodes and can hardly get off the couch. "daddy are you sick?" My girls are 2 and 4 and my world. I just pray they dont ever get this.
I have to leave now, but will post my results on the pain clinic. Wish me luck. Thanks to all who share with us!

i hope you made out well today at the pain clinic.

that quote from the Barrows neurologist, "well buddy, its just one of those things where life sucks", is a classic!