Small fiber neuropathy
 

I have, after 15 months of tests and pain, been diagnosed with idiopathic small fiber neuropathy. I am on Cymbalta, Neurotin, Amatriptyline and vicodin. Have been on this since October. New symptoms seem to be showing up daily. My ankles and feet are like balloons today, it hurts to bend my feet because the skin is so tight from being swollen. My vision is blurry (have always had perfect vision), my hair is falling out, my short-term memory is bad, I sweat profusely from my head, I am hot all the time, and the heartburn is awful! Considering using a cane when I leave the house, which is not often since I lost my job due to my symptoms a week before christmas. My dreams are so vivid, they are not nightmares, just dreams, therefore, my quality of sleep is affected. It is worse in my right arm than anywhere else, and of course I am right handed. I cannot stand for more than about 15 minutes it hurts the heels of my feet and my hips/lower back. The little things are the worst! Buttoning a shirt, picking up small objects like coins, holding cards, reading, eating, wiping after using the restroom. I do not seem to have the problem with hot or cold sensations I can feel that just fine. My doc at the cleveland clinic is very nice. I think it is either rheumatoid arthritis or lupus. My family dr thinks it is carpel tunnel and my neurologist just does not seem to care why I have it. I am getting tired of these two seeing who can pound their chest harder! There are days I can barely function, and I also have good days but they a far and few between. I have a wonderful supportive family and friends that wait on me hand and foot like the Queen that I am (haha) and my pets seem to be the best therapy for me, it is like they know I am not feeling well. I guess I am not asking anything, venting helps a little!

Karen, I am right across the border in Pa, and have SFN also, it is a miserable disease, you dont get any good sleep, wake up al the time in pain, and I also have doctors who pound on there chest seeing who is right while we suffer,, I cant do almost anything that I used to do,, and extensive work and I am out of commision for a week from pain, even taking the dog out is a problem since I am cold sensitive and sit around in a sweatshirt all day,, my eyes blur too, the hands are the worst, just numb and burn at the same time, IBS , least the gastro said that it what it is, I think the stomach is just slowing down to nothing from nerve damage,, dont know what to do about it anymore

Welcome to NeuroTalk....

If I were you I'd discuss the value (if any) from the Neurontin you are using. This drug causes edema and swelling of the legs and feet in many people. It can even affect the hands.

If you have been on it for a while, and you decide to discontinue it after talking to your doctor, you might have to taper off slowly.

Some drugs doctors just hand out...and they don't consider what the patient goes thru. It is very possible Neurontin is contributing to your problems.

FWIW, one of my doctors prescribed Cymbalta for me and and I developed severe stomach pain which would wake the dead(and me). Apparently the makers discovered that it can cause stomach problems and they had to ammend their fine print, so I bet your stomach issues are from the drug or being aggravated by it.

I got off of it and the stomach pain disappeared. You might want to run it by your doctors.

One thing about many meds? IS they affect sleep..
 

Especially DREAMS! Many docs ignore this portion? Make it an either/or situation:
Pain relief-no dreams/pain+dreams.
DO carefully look up any and all meds...on-line. What I do? is ask for samples say 10 days worth? To see IF IT and I can get along. In the meantime, looking up the FULL PRESCRIBING INFORMATION and going down the lists of common and uncommon side effects? Plus my being on a 'new' med? Well, you can figger out IF it's got plusses and minuses and to which degree the + or the - is worth it all.
I chose good sleep, ultimately over pain relief. WHY? Because I'd not really slept well at the time- for 3+ years? And because I was going on other meds for other med-issues that could complicate it all further.
Once you've been put on full morpheine for an injury? And it doesn't do a THING for your pain? You must make a decision to just live with it. Or cope.
But then, we are each different PEOPLE, and as such, act/react differrently to all sorts of meds.
Thus learn about the meds? And deal with the pros and cons once known.
Further? Once off meds? Dreams can and do become well? 'STRANGE'. Your body is 'acting out' for not being able to 'dream' and you are getting some 'pay back'. Likely big time. Some of the dreams I had once off meds? Well, they were doozies! and beyond! But better than horror movies times 17!
Good luck and keep faith! :hug::hug::hug:'s - j

Today has been an odd day to say the least...
 

I am finding this forum very useful for my piece of mind and the information is helpful. Went to see my family physician today about the swelling. I am swollen from my toes to my knees. It is not too painful but my Dr did not seem the least bit interested, almost as if he was sick of seeing me! He gave me a new medicine, I go get it and get home and read about it, it is chlorpromazine...what the heck? It does nothing to help the swelling or pain! I feel as if every dr I have seen thinks this is all in my head? I have got to find a better dr that cares about helping me. But that is going to be kind of difficult as my insurance ends on friday. Cannot afford the cobra program so what is there for me to do. Smile and keep moving on:) The gabapentin has helped with the buring for the most part, the cymbalta is tearing up my stomach, and I am not sure if the amitryptline is doing anything because I take it then go to bed? Has anyone here been given the chlorpromazine?

WOW.... I'd find another doctor ASAP....

The only non psychiatric use of this very old medicine is for nausea and hiccups in very low dose...like 10mg.

What dose did he give you? I am curious.

That is a major psyche drug for psychosis. It is not even used much anymore for THAT!. It can cause tardive, which is a movement disorder that is terrible and incurable once it manifests.

I think it is YOUR DOCTOR who needs that drug, NOT YOU.

Run, don't walk to another doctor ASAP... Please!

chlorpromazine (a.k.a. thorazine)
 

At the very least I would call back and ask the doctor why he is prescribing this drug, what he expects/hopes it will do for you, and any other questions you have about it.

Doc

you will want to double check the pharmacy too. they could have
made an error interpreting his handwriting.

cyclobenzeprine 10mg may resemble that other drug..

That's the one. I was thinking promethazine, but the spelling seemed too different. Chlorphenamine? Chlorphenesin? They got a million of 'em...

Historically in the older days, drugs were put alphabetically on the shelf in the pharmacy. So chlorpromazine generic would be filed in the T's for the parent drug name Thorazine.

Today, more pharmacies put them alphabetically by GENERIC name, instead, because Techs are not trained in everything and don't know all the names and cross references.

So Chlorpromazine may be next to or very close to cyclobenzaprine. Add to that fact, the alarming fact that most doctors cannot spell worth a darn, and thread out letters in long names to fudge syllables, you have fodder for a big error!

It is inconceiveable that you were given this drug... so something is wrong. There are new doctors out there now who don't even have experience with this drug, because it is not used anymore commonly.

Another common error I've seen on boards like this, is clonidine/clonazepam. The brand name for clonazepam is Klonopin, and the brain mixes them up. It is similar to the confusion when Xanax is called Zanax..which resembles Zantac.

When Prilosec came out it was called Losec. This looked like Lasix when written out sloppily like doctors do, and many errors happened in the first year in US. It was then changed to Prilosec. In other countries it remained as Losec.

Omacor was changed to Lovasa because of written confusion and errors. (RX fish oil).

Thanks for the info
 

:eek:
My family physician must be a quack:Bang-Head: I just called my neurologist at the Cleveland Clinic and left a message for her. Now I play the waiting game. But...other than feeling like my skin my burst due to the swelling I do not feel so bad this morning. And below you will see two of the reasons why! I love my fur babies:)

You'd think with a drug like chlorpromazine, that is seldom used anymore, that a pharmacist would have the sense/training/moxie to pick up the cussin' phone and ask - I know my pharmacist(s) have often enough (though admittedly, my PCP's handwriting can only be read under an electron microscope...) I know, I know....

Doc

Alot depends on the dose too.

Karen is already on 3 psyche drugs... chlorpromazine makes it
4. That is alot for a family doctor, IMO

When patients say things "like my skin feels like it will burst"...that may be misinterpreted by a poor doctor as psychotic ideation?

Most chain pharmacies have drug interaction software, and insurances will block some fills and require a pharmacist override.
Some pharmacists just override without much thought, I'm afraid to report. Some interaction screens give confidence intervals too, and if low they may pass without verification. There are many variables here in this case, and none of them in favor of Karen, IMO.

I really think the edema from the Neurontin is not serving you, Karen, well. I think you should discuss discontinuing it with your doctor. Your day to day comfort is important. All that fluid retention may also raise your blood pressure.

Love the picture!!!!!!!
 

that should be submitted to a pet photo contest!!

If you already know that you have SFN, it sounds as if it's non-length dependent which can be wicked. The sweating/heat thing - were you ever tested for autonomic nervous system dysfunction?

And as to the meds you're taking - that's a pretty potent cocktail. Two anti-depressants, one anti-seizure and one narcotic analgesic.

It's possible that one or more of these are contributing to some of your problems.

I also have a neuro at The Cleveland Clinic. If I were in your boat, I'd ask for autonomic testing and very carefully read all of the side effects of each medication on the Internet, not just the sheet of paper that comes with the Rx.

Good luck,

Sheltiemom

The swelling is most likely caused by the Neurontin. Ask your Dr. at Cleveland Clinic about it. It's a common side effect.

swelling
 

If I were you, I would try some lasiks for the swelling, and if youre going to use lasix, take potassium as it strips your body of natural potassium

Lasix also loses thiamine for you and magnesium... and loss of THOSE will make PN begin or become worse!

I ditto that the neurontin can cause the swelling. It may also be the reason for the blurry vision (another side-effect).

Your neuro should be able to advise you...likely better than your family doc is doing.

absolutely first thing I got was mild double vision when at its worst. Also Amtryptoline retains water as well last time I checked.

side ways for a bit however its well worth googling your meds. just read this today.

"A US teen could lose her baby after a pharmacist mistakenly gave her a powerful abortion drug instead of the antibiotic her doctor prescribed.

Mareena Silva, 19, who is six weeks pregnant, was written a prescription to deal with a bacterial infection, US network ABC reported.

Instead the Colorado woman was given methotrexate, a drug used for early-stage pregnancy termination as well as chemotherapy".

Small Fiber Neuropathy
 

I have recently been diagnosed of SFN. After reading the posts of how you both are feeling, understandably why I feel the way I do. I am currently seeing a doctor who has never treated a person with my disorder before, and doctors who have, is about 6 hrs away. I started having these severe symptoms about a year ago. It started like Pseudo Siezures, with itchy, burning feet. They are cold and turning different colors. The leg and feet muscle contractions are extremely painful. I have progressed with symptoms rapidly. My feet are turning blue, constant stomach and bowel symptoms. I have the numbness, weakness, tingling sensations in my legs, feet, arms and hands. Now it is in my face and ear canals. I have a hard time swallowing when these symptoms occur. My body contracts with involuntary movements of twitching and spasms. I have dizziness, short term memory loss, and loss of concentration. Now I am constantly hot at night with sweating spells. Too young for menopause. HaHa. My doctor where I live has tested me for vitamin issues to MRI's. I feel like a test dummy. I was sent to a University Research Hospital where a neurologist saw me and in 2 hours diagnosed me with this condition. He sent me home with a referral to my primary doctor for pain management specialist and physical therapy. I have taken neurotin before and had bad reactions, now I am on Cymbolta and Norco. I have seen Acupuncturist, Therapists, Naturalists, and had no real results. You can't help but feel helpless. I was a very active person with my family and community. Now I am left to sit in a recliner catching up on Lifetime movies. I feel so frustrated, and sometimes very alone. I am hoping this will help by venting these frustrations. I do have a supportive husband, and family, but sometimes it isn't enough. They can empathize but cannot sympathize.

Karen, I'd recommend your seeing a Homeopathic doctor (a good one if you can get recommended to you). If you can get off the drugs, all the better and research the side effects of each one you're taking. a Homeopathic doctor can switch you to medicine with no side effects, put you on a special diet, exercise, supplements, research allergies you may have, etc.. I have had more help from natural doctors than my neuro and GP. They only prescribe drugs.

A good physiatrist will do this too. You can usually find them practicing in sports medicine, but some are familiar with neuropathic problems, as well.

If you can find a doctor that or somebody who give percutaine electro stimulation(electro acapunctuur) helps great with pain,be prepared to have allot treathments

Hi I am new to this forum and learning how great it is to have poeple validate your pain and educate you on conditionis. I have learned a lot in just the few days I have been here.

I have been diagnosed with ganglioneuritis, and I am learning it is VERY much like SFN. I too, and on cymbalta and amytriptyline. These were both prescribed by my neurologist becuase they interfer with the pain flow to brain pathways and can help reduce pain. They have halped reduce the severity of my pain a little.

At one time I was on nuerontin but refused it after a while. It made me so rediculously empty headed and absentminded I couldn't remember my own name. My short-term memory did not exist. Topamx does that to, but not to such a degree.

I have also noticed that cymbalta(or one of the other of my many meds) has recently (past couple of months) been making me nausious(HOW DO YOU SPELL THIS _ MY BRAIN WONT WORK TODAY)(thank you topamax!) - strangly enough, grapfuit makes me feel batter - which conficlts with amytriptiline.

I hope you get help - I too am now having insurance probalems and went from being active, too live and a couch - I have ruined the cushions And pets are the only things that get sane some days. In fact, yeterday when i found we may have to find a new insurance, I was devested. I went into my living room and pepper, my ferret who was out of kennel for play time, LAUNCHED herself at my leg then spun off of me and ran under the couch. It was that one moment of humor that kept me going for the rest of the day.

I forgot to mention that I also have problems with my vision which my neuro attributes to my condition. But I know amytriptyline can cause eye probs..

I sure hope things are going ok for you, I know how the dr.s can be. Maybe you can find one who is interested in hepling who can do some pro bono? I don't know ... when it comes to our health, it seem that the medical community helps the least. My husband and I ahad to do ALL the research and pushing for each and evey test to be done for my condition. I am glad you have supoort at home. My husband is now burnt out and done with it. Please let me know how you are doing I would like to know if you are getting any help.

I just went to the ER about 2 weeks ago. The dr. didn't understand why I was there since the previous tests done shows there is nothing they can do. He didn't even pull his nose out of the chart to ask or see why I would be there. Unfortunately he wouldn't until my husband said LOOK at her. I was having reactions to the Cymbolta. I ended up seeing my son's physciatrist. (I know not spelled right, I too lost memory) She is going to help me now with the panic attacks and depression coming with this problem. I am afraid to ask for help because of the medical profession refusing to help me just because they don't know what to do. I saw my regular dr for him to tell me to move to a city to get better medical treatment. Now I need to move to get help! How is this fair? I feel so betrayed by my body and my mind. I wish that dr can see that it is not in my head when I am asking for help, and have to ask them to look before they can say it is in your head. They did give me meds to counteract the Cymbolta. Now on Ativan for panic attacks and Valum and now giving me Lamictal for depression. I did do the homeopathic route but way to expensive to maintain. I am doing Ionic foot detox with infired belt at home. I have read where the infired is great treatment for neuropathy. The foot detox does help with the pain temporarily. Losing family and friends because of the drama my illness causes. People are to sad to talk to me because the can't deal with the suffering in my voice. Not like we are talking about my illness. They just know I am in pain with the tone of my voice. I have looked for support groups in my area, but no luck. I feel like what more do I have to loose. I am loosing my body, mind, family, friends, my job and now my home.

Not any better...
 

Stopped taking all medications about 6 weeks ago or so. My hand no longer burns it is just numb and really difficult to do things with it and it is always cold. My knee is now swollen and painful (for about 4 days now) very difficult to get around. My elbows and ankles...well anything that bends I guess hurts. just fed up with it all. My quality of life sucks! Vision has gotten better and so has memory those are good things:) Just seems to be something new every week. Hair is still falling out. Back is killing me and I can hardly bare any weight on my left foot it is so sore.:(

but on the lighter side...
 

I do have good days. Today seems to be one of those, better than yesterday anyhow:) And I quit smoking 4 weeks ago today, do not feel any better from it, but it makes everyone else happy! I did have about 8 days of a CONSTANT muscle twitch in my right arm between my elbow and my shoulder, drove me nuts. It stopped as quickly as it had started? Now I just get quick muscle twitches everywhere, maybe 2 to 5 a day. Sometimes I get electric-like shock that seem to be most intense at the tips of my fingers, toes, heels, elbows and ears. It only last a couple of seconds but boy does it hurt! Sores in my mouth and nose. My eyes are dry and itchy all the time, heck all of me is itchy all the time. I have strange little sores on me that will not heal. Just trying to think of all my new awesome symptoms to see if anyone else has them? My knees, wrists, and elbows hurt so much that I cannot get in and out of the tub on my own so I am forced to take showers only. A long hot bath is one of my favorite things to do, and now, at 42 years old, I cannot do that anymore:/ But, I would rather have all of this than the side effects I was having from the gabapentin.