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.

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.

Pain-RX - Cox 2 Inhibitor

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.