$64 Trillion Dollar Question
 

Having been through a fair number of doc appointments since this began in January (realize there are those of you who've been doing for a lot longer), and m about ready to jump off this merry-go-round.

Sorry for probably repeating myself, but I was unable to tolerate the usual suspect meds (gabapentin, Lyrica, etc.).

So - does anybody here honestly know whether or not there is anything other than those meds that will take the edge off small fiber sensory neuropathy?

If there isn't, then I'm done paying co-pays if neuros/rheumys can't do anything else for the SFSN and things stay stable. About mid-way through this search, I had a pain management neuro tell me, quite honestly, that he couldn't help me. He didn't keep taking my money, and I appreciated that.

Thanks,

Sheltiemom

Have you tried Topamax, Amitriptyline, Tizanidine, or Cymbalta? I've been on all those except Cymbalta.

..."If there isn't, then I'm done paying co-pays if neuros/rheumys can't do anything else for the SFSN and things stay stable. About mid-way through this search, I had a pain management neuro tell me, quite honestly, that he couldn't help me. He didn't keep taking my money, and I appreciated that."...




I understand... I have lousy insurance this year. We are required to pay 20% of all laboratory, x-Ray and hospital bills after our $3,500 deductible was met. It really adds up. We have so many expensive lab bills (like two from Athena Labs).

I am having a bad arthritis flare right now so I went to my Rheumy and, of course, he ran the gambit of labs, including all the autoimmune tests (since my AI disease is "undifferentiated"). That can get rather pricey.

Well, he did something to help me. He discounted the cost of my labs by using his cost for the lab tests, rather than the lab charging me their cost. Not to go into too much detail, apparently the doctor gets a 'wholesale' price on lab tests.

I appreciated this. He is being aware of the costs to me, which is rare - for a doctor. :)

That's lousy? I'd like to see your idea of great insurance. We pay 20% of everything--and I have absolutely no income, so lots of places and collection agencies coming after me--yay.

Hi,

Thanks for the above replies/suggestions.

It's not about the money itself. It's about leaving appointments with basically nothing to show for it. If there had been, fine.

Or if I'd been told right away by the first neuros that there isn't a whole lot that can be done for non-length dependent SFSN, but they didn't. They just never scheduled a follow-up appointment after tons of tests were done and after they were told I couldn't tolerate meds. I should have taken the hint.

Am wondering if there is anything under the sun that might help stop most of my clothes feeling like burlap. Non-length dependent small fiber sensory can be difficult at best and impossible at worst.

As to some of the meds mentioned here, am not willing to make the trade-off because of being very susceptible to side-effects which can happen in older people. Lyrica made me feel as if my head was spacing out, and with gabapentin could not focus my eyes.

Sheltiemom,

I was in the same boat you are. I just CANNOT tolerate all the meds mentioned. My Neurologist put me on Xanax as a last resort and that was the ticket. Later, she switched me to Klonopin. I have had no ill effects from either one other than a tad bit tired from time to time. And I think you are right about older people. I think we DO become more sensitive to the side effects as we age. And especially so after menopause. Anyway, you might ask about it. Xanax was the ONLY thing that helped. And that was after a few years of trial and error. One thing though, benzos are difficult to wean off of if on them for a long period of time. So, just know that going in.

Thanks a lot, Kathi -

I'll research Xanax and Klonopin and decide whether I want to give either of them a shot. If so, will ask my primary at next Wednesday's appointment to Rx.

becareful of the dosage....our kidneys are not as efficient as we age, liver either....so sometimes we "build up" a med.....perhaps lower dose, farther apart....

Xanax and Klonopin are not standard treatment for PN and I strongly advise any one considering taking this to realize that the discontinuation syndrome is absolutely HIDEOUS! I have been thru it, and it is awful, I would never have taken it, had I known the suffering that one must endure to get off of it....and, just like opiates, one must up the dose periodically to have the same effect.

Also Xanax has a 4 hour half life leaving one to experience withdrawal every 4 hours if not medicated....and klonopin has an 80 hour half life, so when going off of this drug, you don't even know what is in store for you until 80 hours into your wean. If you think neuropathy is hell, wait until a wean!

The other thing about klonopin is due to the 80 hour half life, depending on how it is dosed, blood levels can get very high.

Basically gaba, Lyrica, and maybe an opiate is the best they have right now....anticholinergics just make sicca much worse.

Yes, there comes a time when we have to accept what we are stuck with.....that is pretty much where I am at. I have some undiffereniated connective tissue garbage, with neuropathy.....or the other way around.

wether it is small fiber non length dependent, or large fiber length dependent or any other type of PN there is really not a lot we can do to get better except to try to mitigate the cause if we even know what it might be. examples such as sugar control for diabetics and eliminating exposure to the toxins which cause PN in a toxic cause come to mind. If not and even in those cases we can only provide a favorable environment for the damage to abate and to maybe even regenerate. Diet, supplements, stress relief, exercize are some of the things we can do to provide that favorable environment. Have you tried wellbutrin? That was neglible in the side effect department for me and helped with the pain to a great degree. i also had side effects in memory and concentration i couldnt live with with neurontin, lyrica, paxil etc. I found great pain relief also by using electrical therapy such as interferential therapy and even tens. There is though pain involved which nothing touches for me not even when i was under anesthesia for an endoscopy. i have large fiber sensory motor axonal PN by the way.

Medication, diet & supplements are the only current way to help with PN symptoms.

There are over 75 meds that are used currently, to medicate for PN. A combination of 2 or more meds, rather than just one, usually is most effective.
Searching for the right combination can be tedious, frustrating and time consuming.

It took me over a year to find out what was the most effective meds to switch to, when the neurontin stopped working effectively.

If you hang in, & don't give up - you'll find the right combination 'cocktail' for you.
If not, you'll end up suffering, and angry at everyone- and everything.

Inga - can't tell you how much I appreciate the "heads up" about Xanax and Klonopin. I've never taken anything from which I had to wean except neurontin. Although I wasn't supposed to do it, when my eyes wouldn't focus one day along with dizziness after five months of neurontin for post-herpetic neuropathy, just quit cold. Luckily, no after-effects, and the neuropathy was GONE.

echoes mentioned Wellbutrin and some kind of electrical treatments. Do any of them sound like a possibility for SFSN?

Barbara
(Sheltiemom)

That's what my doctors around here say, but other medical places (hospitals/clinics) in other parts of the country are using therapies and other things (according to forums and personal stories I have read) to treat PN. They are farther advanced than the doctors in South Dakota, and I have heard numerous times from people with PN that they were being treated with more than medication. I don't know specifically what was being done, because, like I said, nobody around here will treat with anything except medicine.

Unfortunately, I developed PN after gastric bypass surgery. My body does not respond to pills at all. I have tried several different medicines for PN, as well as pain medicines such as tylenol with codeine 3 and 4 and oxycodone. I FINALLY last week was put on the 72 hour fentanyl pain patch, and for the first time since my PN started, got a little relief. I have been bedridden and in extreme pain (I have a severe case of PN) for over 4 months--and had the PN longer than that, of course. But finally I am responding to something--because it is not in pill form. If pills are all they can do for PN--that means that absolutely nothing will help me... because of the surgery I had. And that stinks.

I know I've talked to people with PN who have been helped by things other than medicine--I just don't believe that it is all that can be done. I've read too many personal stories of people who were helped by other things.

To All,

Just want to say how much I appreciate all of your suggestions, ideas and cautions. As a short-termer and probably impatient, don't want to totally throw in the towel and just say there's nothing that can be done.

Maybe it would be better to try a combination of meds, low dose, and see how it goes. Problem is it only took one 75 mg Lyrica and absolutely could not physically function because of the way my head/eye focus felt. Lasted only a few days giving neurontin a second try (previouisly for post-shingles neuropathy 7 years ago).

Guess it's back to the drawing board when I next see the neurologist so won't address this with my PCP next week.

Sheltiemom

What I do? When 'trying meds' ....
 

Is to ask for a weeks' worth of samples [IF they have them] And by day 2-3 I'll KNOW if it's turning me into a zombie or not! Then I'll try w/a 30 day script as a 'trial' beyond that. Yes it costs a bit more? But/and meds only work in some cases after you've been on them at least 2-4 weeks? But, IF it doesn't work? I don't have to worry about throwing out the rest of the 90 day prescription into the trash [and landfills? Don't like such stuffs].
Yes, by all means try different meds! I'd found one after 3 years and four different ones that'd worked for a while....but it wore off? I tapered off the neuro meds and am now on the pain meds 'as needed'. While there are times I'd like to take them more often? I don't! Why? Because I have to be off them for them to really REALLY work when I NEED them! So I go along w/a long term buzz of one sort of pain? I've got my brain working most of the time!
I'd become suspicious of meds w/neurontin....all the sales scandals and unfounded claims about it actually working for neuropathies. All it did for me on the hi doses I was on, was sleep 18 hours a day and hallucinate...when the prescribing neuro wanted to UP the dosages more? I went and got my second and third opinions which saved my life!
BUT, each of us is different! So few ever state any issues about hallicunations ever on Neurontin. I never got to try Lyrica? As it wasn't approved at the time. [Tho neurontin wasn't either? Go figger]
As Nide44 Says? There ARE others! Go thru them but carefully... READ the 'full prescribing information' and learn what dangers YOU mite have to look for! It's scary as heck? But It does make one very careful!
:hug::hug::hug::hug:'s to all! - j

myofacsial release
 

I have a lot of nerve pain my is more pripheral neuropathy but have you tryed anything like myofacial release therapy ? I am on my 3rd session and i really have got some good pain relief from my sciatica on my left leg. I dont know how is works but i sure feel less pain from day to day.

Depending on what type of neuropathy one has--
 

--and where it is, there can be modalities beyond symptom-alleviating medications and supplements that can be useful.

The most obvious situation is in cases of compressive or entrapment neuropathy, in which physical therapy, exercise, and even surgery may help to reduce the pressure on nerves and help them attain better functioning. Most spinal surgeries, for example, are in the end interventions to free compressed nerves.

Some people have also reported good results with the Rebuiler system, Anodyne therpay, cold laser therapy, even hyperbaric oxygen therapy. These interventions, though, tend to help some and not others, depending on how extensive/systemic the percipitating cause is.

Nerve damage can results from so many different conditions, whether secondary to other conditons, such as impaired glucose regulation or autoimmunity, or primarily, such as through trauma, that it's difficult to make many blanket statements about treatments. Even nerve regeneration research has been very hit or miss--again, it seems to help in some causative situations more than in others.

This is why I think it is important to go through the often long investigations to find a cause for one's neural symptoms--if one can be found; this CAN have an effect on how to combat them. Too many doctors, though, are not sophisticated enough in these areas to do the work, and so a lot of people end up falsely diagnosed or un-diagnosed. For instance, how many neurologists know to check for gluten problems, which can cause neuropathy (not just digestive symptoms)? How many know there are tests for antiboides specific to peripheral nerve (not just anti-nuclear antibodies)? How many will extensively question the possibility of toxic exposure? It seems too many, if spinal MRI's don't reveal extensive compression, and if glucose and B12 tests come back OK, just shrug their shoulders, and prescribe an anti-epileptic. I'm not saying such meds don't have their symptom-relieving places, but it behooves all of us to be proactive patients with pointed questions, keep our test results, do the research, and search out the most knowledgable and complete doctors we can.

Lyrica works for me. +/- Cymbalta
 

I feel for you Sheltiemom. I have small fiber neuropathy in addition to fibromyalgia. Lyrica is really the best thing I've found for pain. My doctor was smart to start me on 25 mg, working up over several years to 100 mg two times per day. I have some blurred vision and dulling of my mental capacity (which initially really upset me) but it's a trade off. Recently, I ran out of Lyrica and switched back to Neurontin, and gee, I don't know how I ever coped with Neurontin. It's way to much of a broad stroke for SFN--it's like throwing half the colour spectrum at your painting, when all you needed was blue. Cymbalta, in addition to Lyrica, knocked another 20% off my pain but the memory loss and constipation prompted me to give it up. BTW, don't do what I did: I tapered off Cymbalta over only 5 days, and subsequently suffered crushing migraines and brain zaps for the next 6 weeks. Despite my comments, I am still in the woods with my illness (more in a separate thread) but hang in there Sheltiemom. .

Remember, all you have to do is pay $1 per month on a bill to show intent to pay. If it takes forever to pay, it takes forever to pay. I have personally been through piles of medical bills costing us thousands and thousands of dollars over the years. I have had numerous surgeries and illnesses. I do understand...

to sum it up there is no one medicine be it pain killers, anti depressants, anti convulsants that will work for everyone for pain. There are also no treatments such as anodyne therapy, electrical therapy, cold laser therapy, nerve release surgery that will work for everyone either. The main reason to try to find your cause is if you can you may be able to treat it or control it and thereby slow down or even reverse your neuropathy. If you are at the beginning of the PN journey and throw up your hands and say there is nothing that can be done you are doing yourself a great disservice. There are some of us on here who have had most of the possible testing and still nothing was found as far as a cause goes. At that point you have to come to terms with it and do what you can to alleviate and make the best of the symptoms. What i see on here lately is many new people who have only had pn a short time already throwing up their hands and saying why try, there is no cure, no treatment that works, no medicine for me, some doctor told me there is nothing to be done. You may have something that is causing it that can be controlled or reversed and you really owe it to yourself to make the effort to find out if you do.

With over 15 different places coming after me and no income, I don't even have $1 a month for them.

I just wanted to come back to this post and clarify something--not to start an argument or change the way this post is going... but so other people are not misled.

Mere, that may be the way it is with your medical places in your town--but that is not the truth everywhere.

I asked my mom if that was true... if I could get by with only paying $1 a month on each bill, even though, as I said--I don't even have that much.

She said absolutely not... that is incorrect. She asked the clinic in town if they would accept $10 a month and they said no. Anything less than $30 a month, they send to collections because they are not getting it quickly enough. Most other places will not take less than $20 a month, but some want as much as $50 a month.

So, while that may be true where you live, that is not the case everywhere. I don't want someone to see that, be relieved, and start dropping payments to only $1 a month--only to have their bills turned over to credit agencies. It can ruin your credit. Believe me, I'm there and I'm only 24.

I stand to be corrected... thank you. I am sorry that you are having such difficulty with medical bills. It certainly does not help to have that stress when you are not feeling well. Perhaps the medical entities might reduce the bill if they know your situation?

Hope you feel better soon.

Mere

Sorry, I just reread my message and it sounded a bit harsh. Wasn't meaning to sound that way at all--just in a lot of pain today and it came out in my post.

Some places may very well take $1 a month--so I don't doubt that you are correct in some cases. But the clinic here in town would not accept that. I suppose it depends on the specific place.

As each call comes in, I explain the situation. We had a lawyer write letters to each of the places in July. My mom was paying on all my bills--she has been since I was little and just never stopped. The lawyer said that now that I am over 18, she has no obligation to pay. He also said that if I am not working, they can't really come after me (well, they can--but they can't take my pay since I don't have any). He sent letters to each medical place, basically saying: You've gotten 80% of your payment from our insurance. Sarah can't work due to her medical problems. Will you just write off the rest and call it even? Well, nobody has. Somehow the lawyer says not to worry about the collection agencies and whatnot--but I'm terrified. Not only about my credit, but I'm afraid that they will come haul me off to jail for not paying. I have no idea if that's even possible--but it is really stressing me out.

But I'm hoping that some places will either write it off at the 80% from insurance, wait for payments until I can work, or allow part of the bill to be written off. I guess only time will tell. I hope you are having a good day! :hug:

You aren't being harsh. I think you are on a good track having a lawyer involved.

Have you started filing for SS disability? I never thought I would feel so bad to have to get it but I did and I used a lawyer. Most disability lawyers collect a percentage of back pay for their services only and when you are awarded benefits. It helps a lot. I never wanted it as I have worked hard all of my life. I worked my way into a position as a VP of operations and stayed with my company for 25 years. My employer was understanding but I was loosing more and more time due to illness. I quietly retired and then applied for disability. It is one of the most disappointing things I have had to do in my life...but completely necessary.

I hope you feel better soon. Please try not to worry. I know that is easy for me to say, but it will only make you feel worse...

Mere :)

Well I'll give you my shpeal--There are lots of lovely drugs to try. And evening primose oil and alpha-lipoic acid help me. Or try other products with GLA other than EPO, such as borage oil. And some are recommending r-lipoic acid instead of alpha. Also you might try a very healthy lifestyle as recommended by Dr. Dean Ornish, McDougal, Dr. Andrew Weil, etc. This consists of what you eat, exercise, stress reduction, social support. Also look into Dr. Mark Hyman. His site looks very commercial but I think he is onto something, he is into functional medicine, where you actually go to the cause of illness instead of putting a band-aid on it with drugs. Look into nutrigenomics--food is information to your body.

I believe exercise is very important and you can start that now. Avoid meat, eat fruits, vegetables, whole grains. Avoid refined carbohydrates like flour and sugar. Eat good fats like nuts, avocados, canola oil, extra-virgin olive oil. This is what I am doing and it has reversed some of my weird neurological symptoms.
Electron

Thank you.

I have applied--but without a lawyer first. They said to be prepared to not have a decision for 2-4 years, and to be declined. Said almost everyone gets declined the first time. But if I do, we already have a lawyer ready to appeal with us. Hoping that is how he works with the money situation, because I certainly don't have any money to give him. I would have to make sure--otherwise we'd have to appeal on our own, which would probably get me denied again. (We=my mom and I) So I am still waiting to hear on a decision. I just graduated in May after 6 long years of college. I've only had neuropathy since December (that's when the pain started, anyway). I have, though, had 4 things wrong with my back since I was born (pain started when I was 8). I worked very hard to get through college with all the chronic pain I had, and now that I finally graduated in May, I can't use my degree. I hope that even if I do get disability, that I won't be on it forever. I want to use my degree and work... but at the same time, I'm not too proud to not accept financial help because I certainly do need it!

That does sound a little crazy and too good to be true, but I will believe you!

I have a question though... I've heard it is best to go through a lawyer because they know the process (as you say this guy does...) but.. if I happened to have him help me if I do get denied, and then was denied the appeal... is there a chance to appeal again or would I have to start all over from the start with a lawyer? Just curious.

And--
 

--I can vouch for Mike as well; we met through having the same practice--Cornell Weill Center for Peripheral Neuropathy--dealing with our conditions, and then I got to know him when he volunteered at a YMCA on Staten Island, where I used to live. Mike will tell you very specific things about how the appliccation needs to be phrased, centered around the "functinal disability on your worst day" concept. I've referred a number of people to him over the years, most of whom did get through on the first try (not that they didn't have real disabling situations).

I can vouch for Mike, as well.
He helped me when I needed advice
about my son's SSDI after his spinal cord injury accident.
I've referred others to him.
He's an invaluable resource for SSDI advice.

Sorry for having to make this comment, but how did this thread get so far afield?

May I suggest that in future, one start a new thread when the topic takes a sudden and unexpected tack.

Thanks all.

Sheltiemom

I told my mom about what you said, and she was pretty excited about that. We definitely don't have money for a lawyer... but we are both a little worried that if we appeal with his help and get denied, that we won't get a second appeal and will have to start all over. We really need this now--not years from now. I don't have enough to pay my bills past December, if even that long. But I do plan to contact him regardless and see what he says. I have to wait, though, for a decision. I haven't gotten denied or accepted... I don't know how long it will take.

As far as this thread getting off track, so many of them do. I rarely see one topic only throughout a post--there are several topics and conversations going on.

I have suffered with a pure-sensory small-fiber neuropathy on and off over the last five years.

That said, I have found both Cymbalta 60 mg per day and Lyrica 100 - 150 mg day to be quite effective (each taken separately in my case).

I got total relief of my tingling and burning within 24 hours on the Lyrica (but with some drowsiness to go with it), and also about 75% overall relief on the Cymbalta.

Cymbalta, however, does take roughly two - three weeks to reach maximum effectiveness.

You must first take Cymbalta at a dose of 30 mg per day for the first seven days to titrate-up, at which point you go to the full strength of 60 mg per day on the 8th day.

You might consider taking the Cymbalta at 60 mg per day, and then taking 50 mg of Lyrica at night in combination to supplement.

Each has a different mode of action (Cymbalta = Antidepressent and Lyrica is an Anticonvulsent), and together they have a syngestic effect at a lower dose then each would achieve separately

Best of luck!.

I can only make a couple of suggestions, but they might just do it. Although not everything works the same for everyone, I found at least some relief with lidoderm patches. Not complete relief, but I don't think anything has been inveted yet for that. You might also try icing the area. Very simplistic, but very effective. The only problem with icing is the fact you should only use the ice pact for 20minutes an hour. As soon as the area warms up, your kind of back where you started. I hope you find something that helps (at least until they come up with the "miracle" drug I keep hoping for). Best of luck to you and all of us cause we're all dealing with the same thing.:hug: