Medications for SFN
 

Hello all,

I have an upcoming appointment with my neurologist and I'm thinking of speaking to him about possible medications for pain. I've been having some pain in my hands and feet (rarely elsewhere on my body, since I have whole body SFN), so there has been an increase, though not enough to need regular medication. However, because it has increased and because I sometimes have moments of pain, and finally because it's all a new development, I'd like to have a prescription in reserve in case it breaks out. It usually takes weeks for me to get an appointment with my neuro, so I don't want to risk not having something in case the pain comes on intensely and doesn't go away. I hope I don't have to use it, but I think it's a precautionary measure.

So I'm writing to get some idea what medications people use/would recommend for SFN. I have very little burning, and much more electrical currents, creepy crawlers, some numbness, internal shaking/vibrations. I also have various autonomic symptoms, like sweating issues and orthostatic hypotension. The pain is throbbing or stabbing pain when I get it and most often at the tips of my fingers and toes or in my hands and feet more generally.

I wouldn't know where to start, so suggestions are welcome. Thank you.

I'm not an expert by an means, but based on what various doctors have told me, gabapentin is the safest "go to" med for neuropathy. Others can tell you about various antidepressant drugs that can do wonders as well.

I'm in the same boat you are and don't feel I want to take a drug daily when I don't really need one daily. If things ever escalate, it's nice to know they're there, but not yet. I don't mean to keep repeating myself, but the TENS unit I got has been miraculous for me. I was incredibly skeptical which is why I put off getting one for so long, but I'm kicking myself now. It cycles on and off while I sleep, and I don't wake up "buzzing" any more. I was flaring pretty badly tonight after exercising, and within about 30 minutes, I was feeling better after strapping it on.

Hi David
 

I think it's awesome that you do not take prescription drugs while going through this type of experience… I wish I could say the same. My symptoms are a little bit different than yours… I have mostly Burning pain in my hands feet thighs and back... I do get the electrical shocks every once in a while but they have seem to have gone away in the past month or two.

I am on the same idea as Janieg. I have found a lot of relief and gabapentin. I also take a sedative called Clonopin for breakthrough pain...sometimes in the middle of the night pain hits hard and i take it to help me sleep. My dose of gabapentin is 600 mg and I usually take it in the evening. I think the Gaba is alot safer than the clonopin when you look at the side effects and addictive qualities.

So my vote would be gaba...but try and do without...that is my goal.

Sven

See Table 1.


Diagnosis and Treatment of Pain in Small Fiber Neuropathy

Regards, ElaineD

I recently had to stop taking Gabapentin for my neuropathic pain because it was making me suicidal. Over a two week period I titrated up and noticed my depression was wosening so I went to the ER. I'm not sure what I'm going to do for my pain now; I don't see my neurologist and pain management doctor for a few weeks. But my reaction was rare and a lot of people have success with Gabapentin.


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Granted I don't live with the challenge of the neuropathy pain so many talk about here, but I have my share of pain. Ibuprofen and Pain-RX have been by daily pain meds, but a new D.O. insisted I get off ibuprofen, very damage possible drug. More than one realizes.

I'm using Pain-RX and Arthritis Tylenol daily now and it's working and I'm so HAPPY to be off ibuprofen. Look at the Pain-RX for MAYBE your issues. This Pain-RX is the closest to a natural opioid.

The D.O. gave me scripts for Vicodin and Ultram but I won't get them filled, don't want to be a slave to these meds and the major concern of constipation.

http://www.neurotalk.org/vitamins-nu...inhibitor.html

I've been real pleased with Lyrica. I started about a year ago? Gabapentin didn't work for me, even at the highest dosage.

Hi David. I'm unusually allergic so this may not be that helpful to you. But I did want to give you the worst case scenario that has been my own experience with the families of drugs commonly used to treat neuropathic pain.

I was put on Amitriptyline (at varying dosages) for three years. I became very fond of it because it helped with the pain, helped me to sleep and seemed to be side effect free. But finally I realised that some of my most annoying symptoms were becoming worse and I was also having to increase the dosage to get any pain relief. One day I just stopped taking it and my heart palpitations, severe sicca and extra fatigue all disappeared. The painful SFN flared up like mad for a few weeks though but settled down to exactly the symptoms you describe after a while.

Then I tried Gaberpentin as the burning pain returned. This was a traumatic experience for me and my husband as I became psychotic - terribly angry, visual disturbances and too dizzy to function and still suffering the pain.

After this the neurologist recommended Cymbalta. I was desperate enough to give it a go. Five months later my mouth was horribly dry, the SFN was exactly the same and the main benefit seemed to be that I coped with my symptoms rather better because it improved my mood somewhat. But I felt this wasn't a good enough reason to keep taking it because I wasn't clinically depressed. So I tried to taper off it quite slowly. Disaster! I had the most awful backlash - retching constantly, psychosis, dehydration and brain zaps. So I had to restart it and then taper by emptying the lowest dosage capsule down the toilet a tiny bit at a time. A week after finishing this I got pneumonia followed by a whole host of awful health problems, each of which hospitalised me for weeks. I feel that the Cymbalta withdrawal triggered a huge slump in my resilience somehow.

Now I have the odd night from hell with the SFN and flares of BMS but otherwise I'm like you with the widespread crawling, tingle, wet sensations, burning and freezing. My mantra is to keep my friends close but my enemies even closer. Pain being the main enemy - I choose to put up with it rather than risk further drug induced side effects or dependency. However I'm newly found to have primary Sjogrens so, after five long years of these symptoms slowly progressing, I'm very much hoping this means that my SFN is at last acknowledged as inflammatory in nature and I can get back onto further disease modifying treatment once more. Have you been tested for Sjogren's Syndrome I wonder?

Thank you all for your comments and for sharing your experiences.

A general question for those who have used Gabapentin or Lyrica (or any other medication you think I should consider): aside from the pain relief, how did you do during the day, doing your regular tasks, going about your daily life? For example, just now there was a post about how Gabapentin seems to cause a general and lasting sedative affect that becomes almost like a permanent state. And this isn't the first time I've heard such things about medications in general.


Some specifics:

Janieg: I'm with you. I will try TENS and marijuana before any pharma meds. So that goes without saying. :)

Haute Mess: I'm sorry to hear about your experience. I hope you're much better now. I appreciate knowing about this important side effect.

Sven: Thank you for the kind words and encouragement. Well, I can do without for now because of my high pain threshold (for some reason) and more importantly the fact that I don't have constant pain but bits of it here and there. I have much more nuisance symptoms or such, as I described. I hope you can get off the meds too and I hope I don't have to get on them myself. I'm going back on my very strict diet now and recommitting myself to cleansing and healing my gut, so we'll see how that goes. Thank you for sharing.

Mat52: Thank you for sharing the details of your difficult experience with meds. I'll take this into consideration. It's, of course, not uncommon for someone with immune issues like (or me) to have difficulty with meds. Also, about Sjogren's, I've had most tests except the lip biopsy. All of them were negative, hence why my rheumatologist decided I didn't need a lip biopsy. I'm still considering it/pushing for it, but I'll see. I may see another rheumatologist at some point, since it's quite obvious my issues are immune mediated in some way and that I've likely developed autoimmunity or possibly. Regardless, my SFN is almost certainly inflammatory.

Just an update: I had my appointment with my neuro, and he prescribed Lyrica. When I told him I was worried that the pain might suddenly come on and that I'd prefer to have something just in case, he said sure and that he could prescribe Gabapentin or Lyrica, and just ended up prescribing the latter. I didn't make much of it, since he said they're from the same family and I am very much hoping I don't have to take it. It's just insurance. And I will try marijuana and Tens before anything like Lyrica, which will likely turn my brain to mush from what I've heard. I work with my brain so I'm not sure I could ever take it. But if the pain comes on, perhaps that's not an option.

David - Just a note on the Lyrica - sounds like you are hoping to take it like you would advil for a headache (relief from a single dose). I want to make sure you are aware that this is not how Lyrica works (from personal experience and conversations with my neuro). Lyrica can actually take 6-8 weeks to work fully within the body. For me when I first started taking it the effectiveness seemed to fluctuate and my doctor told me that yes that can happen. I have been on it for 6+ months now and the fluctuations are fewer and farther in between. It might work on first dose but there is a good chance your body will need to adjust for it to work fully. Also as far as side effects - day 1 and 2 of Lyrica I was pretty spacey and out of it but that definitely subsided. I still struggle with occasional bouts of sleepiness/brain fog feeling but not always and I am working with my doc to see what we can do about that (dose adjustment perhaps). Hope this helps - good luck to you!

Boiler, thank you for your note. I appreciate it. And you're certainly right. I was aware of this, so I won't be expecting immediate relief. I imagine my body will work similarly to yours and take some time to adapt. Perhaps my words were misleading, but believe it or not it can takes months, certainly weeks, for me to get in to see my neuro, if the pain comes on intensely, so I was thinking of such a timeline, and thought it would be better to get started immediately, if it came to that.

Thanks also for addressing the side effects of Lyrica. That's good to hear. Unfortunately, my brain is my meal ticket more than in most jobs, so I have to be careful and try to maintain optimal cognitive function, and as things stand for a few years now I've felt cognitive decline, which is troubling. I'm hoping to reverse that, but perhaps that's too optimistic.

I would say similar for me - I work as an engineer so the brain is definitely a necessary aspect :) I understand what you are saying now about better to have the Lyrica on hand - just didn't want you to be surprised or give up on it too soon due to lack of effectiveness.

Ah yes, engineers do need their brains!

Right. Yes, well, I'll give it a chance, if it gets to that. And I don't mind tuning out, but I can't work if I'm always out of it. :)

I wouldn't recommend this under usual circumstances but with sfn I think you need to be prepared. Tramadol - I take it only when really desperate. It kicks in for me in half hour and you have 24 hours joyous relief. I then won't take it again for another week, two weeks maybe. You will already know about the addictive risks associated with this. The good thing is you can take it as and when. It hasn't caused me any problems at all. I just wish I could have it every day as it also makes me feel good and have some energy and I feel better all round on the days I have it.

I agree here with Joanna. As much as it horrifies me to say this (I am someone who has lived my life being anti-drug, holistically, and a health and fitness nut).
I must say... I'd prefer to have narcotics to take for when the pain is absolutely unmanageable then to be on a daily med. I have been dealing with excruciating nerve pain for 2 years now. I tried lyrica, neurontin, flexeril, zanaflex, cymbalta, baclofen, and could tolerate NONE of the side effects, nothing touched my pain and some made my autonomic problems worse or caused emotional problems. As much as I still DESPISE to put a pill in my mouth, I thank the universe for having short acting pain meds that break the cycle and keep me out of the ER. In the beginning I was terrified of addiction, becoming dependent, etc. After 2 years, with much relief, I can say that I still only need 1/2 to one pill to break the cycle. Once I take it, I rarely have to repeat the dose in the same day unless I'm in a very bad flare. Sometimes I can go a few days and not need to take anything.

I take Gralise which is time released neurotin. I take 1,200mg a day before bed so I sleep through the side effects. The down side is it's expensive and took me over a year to get the insurance company to approve it.

I tried Lyrica and would have considered taking it I just didn't have the time to fight with the insurance company to get the stronger dose approved. At some point I will try it again, when I have to time to fight the fight with the insurance.

Thank you all for your input.

Joanna, I appreciate the importance of the point you make. Is Tramadol the one to go with? Healthgirl, is this the one you use too? I can certainly ask for a prescription that I can then have on hand and fill in case things get very bad. This is an important point. I'm trying to keep it as pure and natural as possible, but if the pain gets excruciating, perhaps it's best to have something on hand rather than head to the ER and waste an entire day.

Mike, thanks. Unfortunately I have to stick to the cheaper options, if I do take anything, since I may not be able to have many or perhaps any meds covered, and may have to pay out of pocket.

Hi David, yes I'd say tramadol is the one to go with. I got the prescription in and ensure there is always some in the cupboard. It really is the thing for the days you don't think you will get through pain. Unlike Gabapentin and all the those types you don't have to worry about taking it all the time or missing doses. For me it is seductive, I have a better day all round on it and sometimes the day or so after I miss it. That's the psychological draw of it to be aware of. It does just provide an extra bit of happiness!

Thanks for this suggestion. I'll look into, likely get a RX and have it on hand. Does it have any side effects? Does it cause constipation? Isn't that a thing with such meds? Other than the addition issue that one needs to be aware of of course. Also, does it completely take your pain away? If so, does it leave you numb mentally? I would need to be aware all day, that's the problem. And it sounds like it lasts all day, or 24 hours. Sorry for all the questions, but it's always better to speak to a live person who is taking it rather than read about it online, especially when that person has symptoms similar to your own. :)

For me there aren't really negative side effects. I think it may cause slight constipation but not enough to notice. It can make you lose your appetite a little bit but nothing horrible like some drugs do. It really isn't a zombie effect, for me it's the opposite. It gets me going, I clean, I get on and have a good day with more energy. Its a very effective pain reliever I feel. If the pain is there still, it's pushed right into the background so you can get on a bit more positively alongside it rather than feeling soul destroyed.
There have been times where I've had such a great day that I didn't want to come back to normal 24 hours later. That's about how long I feel the effect but I'm a lightweight. When it's out your system you just adjust again. It's a little euphoric high you get with it rather than anything scary at all and that's the addictive draw. I find it very pleasurable considering most days are immersed in pain discomfort and consequential misery. It is nothing overwhelming like you get with recreational drugs, it's very subtle.
Why don't you just try one one day and see how it goes. I doubt it will make you sick like some of the other drugs. But if you have a problem you can get it out your system quickly enough.
It will not make you out of it to the extent that you are giving the game away. Unless you have a bad reaction like some people out there possibly will then no one will be any the wiser you have taken it.
We are all different but my experience has been good. I struggle tolerating all sorts of drugs but this I can pretty well.
I take the minimum, one 50mg capsule a day as and when.

It sounds like we should all be on this all the time! :)

Thank you so much for all this information. I'll get a RX and go from there. I don't have nearly enough pain to justify it now, but in case things go downhill, though I hope them don't. If/when I do try it, I'll let you know.

Glad you have something like this and that you can find some relief now and then. Thanks again!

Hey all, I take Cymbals which truely saved my ability to walk. Gabapentin never did anything for me but make me loose my memory.
Only recently my doctor moved me to carbomazapine, I take 600 mg. 300 in the morning and again at night. I'm finally able to have my wife touch me. That was really hard for us. I still have pain and flare ups but they are better and more manageable now.
I'm still quite fatigued but Nuvagill helped with that. I just wish I didn't sweat like I ran the Boston Marathon when just walking to my car.

Side effects will continue but having a more meaningful life has made me happy!!

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Thank you for sharing this with me/us. It's useful. I appreciate it.

More than that though I'm happy to hear that you are happy. That's wonderful!