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 about using narcotics, there are various reasons for it, including lack of familiarity with narcotics, unwillingness to establish surveillance of patients, and or fear of patients, what I see out there as a result is partial and very lame treatment of patients with chronic pain. Non narcotic madications may be a valuable part of the pain management arsenal, and in fact most pain practitioners use them on a regular basis, at the same time it is true that narcotics are generally pretty safe, however the chronic use of these substances may carry significant neuro-endocrine effects among other problems.
I also see a lot of patients that have been placed on non narcotic pain meds which may be very expensive without proper evaluation of effectiveness, such as performing withdrawl trials.
On the other hand, in this land of ours, the USA,  there is a huge number of patients out there with behavioral problems, such as cheaters, lyers, malingerers, addicts, thiefs, lazy people, and people with hidden agendas, that make the practice of medicine a difficult one and in part explain the reluctance to treat pain that many practitioners have.

[upsidownyak]

thank you all for your answers and information. there are two alcoholics in my family so I do worry about addiction.

however, on friday, painful and very persistant cramps began in both feet and my left calf.  my foot cramps were so bad that muscles on the top of my foot were strained.  I tried staving the cramps off with bannanas and will try a multivitamin starting today.

my original question was basically, is there a non-drug therapy for whats going on with me.  I hope this is seen as a continuation of that question and not a new one:  Has anyone had experience with "TENS" machines for relief from neurapathy or fasiculations (or cramps?)

thanks to all of you for your time and efforts,
upsidownyak

[kcholt11]

Hi,
I have Small fiber non-diabetic Bi-lateral PN.  My most unbearable symptom(bottom of feet)is the terrible burning sensation.  I tried a lot of meds too.  None worked for me.  I ended up going with a spinal cord stimulator Which is simular but yet different from the 10s unit. If you want information on the stimulator I believe you can go to: www.ans-medical.com  This is an alternative pain management to medications for some.  I say some because it works for some people and not for others.  It has helped me somewhat, and as I learn how to better use the device I hope I will receive better results.  The stimulatoe was done througha pain management clinic.  I also see a Neurologist who is running MANY tests in order to try to find the root cause of the neuropathy.  He has me on Lamictal(says it has helped many with the burning)which is an anti-seizure med like neurontin.  I'm also taking Tramadol for pain.  Finally, my PN is also spreading to my hands(starting to get symptoms in arms to shoulders)and I get what I call a flash burn(same burning sensation as with feet)on the outer left side of my nose.  That only happens on occasion so far and lasts a couple of seconds(thank the Lord).  Anyway, that's my story in a nutshell.  I hope the stimulator part helped with your original question.  Good luck! K.

[thogan]

Don't know if it will help, but you could look at www.curezone.com.

There's some suggestions for getting rid of parasites there.

[cox]

Does anyone know if steroid shots could be a triggering effect
to Neuropathy. Seven months ago I was sent to supposedly a bone specialist and instead the scheduling was messed up and they scheduled me with the on staff podiatrist I had some thobbing and some burning my feet. He began series of shots one in each foot for four weeks. After that I have yet to put on a normal pair of shoes, severe burning, my feet stay cold but sweat. I am constantly washing them with warm water or using a blow dryer to warm them.I am being treated for small Fiber Neuropathy
Lyrica 300mg in conjunction Cymbalta 30mg.I have seen probably 4 other doctors since an they will not comment on that issue.
Cox

[Gloves]

I am curious if the Lycra and Cymbalta are helping with your pain.  
has anyone else out there been on these meds?

My issues are symptoms began with face pain.  Diagnosed as trigeminal neuralga atypical bilateral.  The pain is in the area of the v2 but trigeminal is rarely bilateral.

I am on Lamictal 200mg per day and Neurontin 3200 per day.  This helps most of the time but I have been on the meds for 5 years now and am concerned about that.  Looking for options.
also have numbness -"gloves" feelings in my hands, feet, face and sex organ.

Anyone with sucess with B-12 and or Lapoic acid?

Sorry for so much info and so many questions but I am really looking for help!

[pambr]

Clearly you have lyme. NO DOUBT.
Find a lyme doctor and get on antibiotics asap.

[oceanid]

A related discussion, Alternatives was started.

[bella10]

A related discussion, feet burning was started.