small fiber neuropathy and fasiculations getting worse

[upsidownyak]

I am 44 yrs old, male, 196 lbs, reasonably athletic (kayaked competitively till four years ago),



Five years ago, very pronounced fasiculations in both gastronemius muscles. They would get much worse after exorcise. It looks like there are worms under my skin, very active worms.  Then I had an attack that one doc. said was gout (left great toe.)  A year later I had a second “attack” (ankles) then three months after that I had a third in both feet (tarsals.)  My feet were grey/purple and the size of footballs.  I was put on Prednisone for twelve weeks.   Soon after that the soles of my feet started burning (like I was walking on a hot tar road in the summertime.)



A pronounced stinging and periodic(unpredictable) sharp jabbing in both feet began about one year later.



For the last two years, the lateral sides of calves and thighs have lost a bit of ability to feel some touch while my feet have become hyper sensitive, to light touches especially.

Tinnitus in both ears, but much worse in the left started at this time as well.  It is unbelievably loud at times, but always there to some degree.



I’ve been tested several times for Lyme, been tested for ALS, and had two EMG’s.

My blood work has come back as hypercalcemic, hypertensize and my creatinin is three times norm. I had other tests at Brigham + Women’s Hosp. and was diagnosed with a small fiber neuropathy.

I’ve been put on Nortriptaline(100mg), Neurontin(2700mg) (now Lyrica) and Lidocane patches. I also take a high blood pressure med. and recently started a med. usually given to Parkinson’s patients (to fight off the effects of the other drugs in the morning.)



The level of pain has gradually increased over the years and the fact that it just never lets up, is; getting to me.



Q1: isn’t there anything (other than pills) that can stop the burning.  I hate being as foggy headed and lethargic as what these pills make me.



Thank you very much for your consideration and service,

upsidedownyak

[CCF-Neuro-M.D.-PW]

Unless a cause can be found for small fiber neuropathies, unfortunately the treatment is symptomatic, as in your case. And in about 30% of cases, the cause remains unkown, although new tests such as skin biopsy to study epidermal nerve fiber morphology and density, are decreasing this number. This test is available at some neuromuscular centers such as the Cleveland Clinic.



The basis of symptomatic therapy is tricyclic antidepressants such as noryptaline and nerve agents like neurontin or lyrica. There are different types of tricyclics with different levels of side effects - this could be explored further to find the right one for you, although nortrpytaline is one with one fo the fewest side effects (in terms of dry mouth, blood pressure etc). Some other nerve drugs that have been somewhat effective are oxcarbazepine. Topical agents can also be effective and avoid systemic side effects such as Capsaicin cream. Hopefully a combination of the above of the right drugs at lower doses (together) will provide the most benefit with the least side effects



Make sure you are wearing the right shoes and inspect your feet for trauma or skin breakdown regularly, so as to avoid any more cause for pain. Try to avoid analgesics such as opiaites as they will cause addiction in the chronic setting.



Good luck

[vega1318]

Sorry to hear about all this pain.   Usually, Lyrica / Nortryptiline combination is helpful.   I wonder if you should look into / ask your doctor about capsaicin patches .   They're like Lidocaine but maybe more helpful in your case.  



Also, have yourself tested for Hansen's disease (it is also called lepromatous neuropathy) -- your symptoms are similar to what can be experienced with it.   Do you live in TX, CA or AZ?  I believe it's more prevalent in those states.

[upsidownyak]

thanks very much for the reply. I tried capsaison last week.  my left foot didn't feel it at all.  my right foot maybe felt better at night but during the day stung like crazy.  i'll give it a try again, starting with a smaller amount.



I live in Rhode Island and I've never heard about Hanson's disease.



additional meds that I take (and couldn't remember the name of yesterday) are: Provigil 100mg and Diovan 160mg.



thanks again

upsidownyak

[upsidownyak]

thank you for your thoughts and the links.  i'll check them out right away.



BTW,

i was tested for lyme disease even before all the troubles with my feet and legs. While in a whirlpool one day, about 9 or 10 years ago, i noticed a bullseye bruise about 12cm in diameter on my thigh.  i never saw a tick or tick larva and the bruise was gone the next day.



if this is lyme, and it's 10 years old, i'm probbably in a lot of trouble.  



i just wish that i'd find something to stop this burning!

thanks again,

upsidownyak

[dee1964]

Hello. That was a nice post except for one thing, and I apoligize i advance if I'm trying to educate a doctor. But, using opiates in the chronic setting for chronic pain does not always cause addiction like you said. Your statment should've read if you know how to treat in pain managment, should've stated that the use of opiates in the chronic setting will cause physical dependance.

physical dependance and addiction are two entirely different things, and if you go on the special websie for pain managment, you know the reputable one, it states that patiens with real pain who use opiots for long term chronic pain have a very very small chance of addiction. The problem i am having with neurologists is they will give me all kinds of stuff that if i suddenly stop taking it will cause seizures, or cause organ damage, all of which opiates will not, opiate withdrawsl is not life threatening like some of your neuro meds, and take the tylenol out like all respecatbabl pain managment docs do, and you have a product that does not cause organ damage, not toxic to the body, and actually gets rid of the pain, that' sthe point in taking a pain pill to get rid of the pain.

Also, each patient needs to be evaluated and treated individually for  abusive potential and monitored heavily like I am. If a patient is a good patint, takes them as prescribed, does not deviate from the physicians directions and signs a contract and does everythihng by the book, there is not a reason i can think of not to treat that individual as an individual and not as a potential drug addict. 2 years ago my pain was so bad i went to a neuro for the first time, wasn't working for 6 months due to debilitating pain, he wouldnt help me said the same thing you did but gave me enough klonopin, neutrontin and a bunch of other stuff that turned me into a zombie with hundreds of side effects and was flat out dangerous to my body long term. i finally found a reputbable pain managment doc and have been going monthly ever since, and he keeps me at a pain level i can live with, like a level 5, which is giving me quality to my life and i bounced back, got back to work, prior to leaving neuro for pain managment doc i was about to file b/k and lose house in fire sale, if it wasn't for my knowledgable pain managment doc i would've lost it all, he saved me in time, so it brings me distress to still hear neuros classify everyone as druggies and own't treat them with drugs that work that will not hurt your organs or kill you with seizures if you stop taking them suddenly, all because of the addiction fear. a good doctor knows how to treat and watch for that, so maybe you should refer your patients to a pain specialist, he's a specialist with these meds like you are with the nervous system. full believer in specialists like i'm sure you are. It's just ignorant to say long term causes addiction to everyone which is so untrue. pain patients have rights.

thanks for listening.

[barinas]

Dee, you are right addiction and physical dependance are not the same, although similar, abuse potential is another term used and it relates to the euphoric effects of narcotics, mainly the short acting ones. I agree with you that most physicians including neurologists are very shy