New here
 

Hello,
My name is Kris. I am a 38 year old mom of three kids, ages 8, 6 and 3. Until last fall, I was active and healthy, exercising every morning, chasing my kids, cleaning my house, and on and on.

Then last fall my inner ankle started hurting. Burning and aching. I spent six months going to orthopedic doctors and having imaging done. In april, my other ankle started aching. In the last few weeks it also progressed to burning, and I'm having some burning off and on in my arm. Some days my ankles feel decent and somedays they burn. Today they're burning.
'
I spent the last week thinking I had RSD/CRPS. I was just seen by a neurologist at MGH yesterday who said she doesn't think it's RSD. She said it's small fiber predominant peripheral polyneuropathy. She's ordered a skin biopsy and autonomic testing, which will happen in the next two weeks. I had started neurontin and she increased the dose. It doesn't seem to help yet.

I am so sad. I thought I would have surgery and be fixed and now I realize this is it: pain. The neuro and my husband have ordered me to call my primary care for an antidepressant. I just did but I feel like nothing will help. And I never had to take drugs before. Now I will for the rest of my life.

My neuro told me to take only my multivitamin and that's it. Usually I take flax and omega three and calcium and vitamin D. She said just the multi. Everything I read to take is vitamins and I wish I could try some but for now she said no. I want to try everything, even the rebuilder. I want to heal!

Anyway, I just wanted to introduce myself. Sorry I am so doom and gloom. I am having a hard time adjusting, and am still concerned about RSD.

Best,
Kris

Well...
 

your doctor sure doesn't know much about healing....only
identifying.

I'd suggest you get a Vit D level done (3 kids!)
and B12. Even Dr. Latov's book...has a section on nutrition! (it is not spectacular and has a glaring error, but it is included in his book:
http://www.demosmedpub.com/prod.aspx...=9781932603590

Women lose enormous amounts of Omega-3s to the fetus, for the development of the baby's brain and nervous system.
In fact there is a supplement now for pregnant and post partum women called Expecta.
http://www.expectalipil.com/

You have had 3 children and this has been a nutritionally
draining experience.

I would continue with the EFAs...and demand the serum tests for Vit D and B12. If your doctor refuses, I'd get another.

Also after having children, autoimmune things start for some
women. You don't mention having that tested either.

PN doesn't typically start in an ankle. It starts as pain and/or numbness in the feet and hands.

There are other things to consider as well. Rheumatoid arthritis, gout, thyroid disease (hypo typically follows pregnancies).

It is hard to have 3 little kids, pregnancies and all those demands, and not think nutrition/deficiency.

Look back and see if you have had Cipro or Levaquin prior to your ankle pain. These drugs cause PN, and also affect tendons, and in some cases MONTHS after using the drug you can have a tendon rupture. Ankles and knees are the most frequent sites for these tendon issues.

Welcome here... now is the time for homework. When you read up a bit, you will be able to ask for the tests you need and not be put off by a busy/arrogant doctor.
And you can request Lidoderm patches for pain... they work much better than Neurontin.

BTW Essential fatty acids are not vitamins...they are ESSENTIAL foods that your body needs daily
to repair itself. If you are not eating foods high in them you need to supplement them. Pregnancy depletes them. You do not need a doctor's permission to eat or take them. YOU are in charge of your healing. After 3 kids I can't conceive of a doctor telling a woman not to take calcium and Vit D! That is so antiquated!

Good Grief!
 

What is he thinking! Was there a specific reason he wants you not to take anything? Is he still testing?

I'm thinking ankles. Having just gone thru a severe stress fracture in my ankle and finally getting it healed, I'd also recommend a podiatrist. Maybe one who familiar with autoimmune diseases. Have you had an autoimmune panel done?

I know you are depressed, but now is the time to arm yourself with reading on the subjects. The stickies at the top to the forum is the best place to start. The stickies are full of info from people who have already been there and done that. I totally agree with Mrs. D unless there is a specific reason he asked you to stop the vitamins, etc.

Billye

Hi, and sorry to here about what your going through..I thing it's odd about
That dr. is doing..Sorry to here your going throug this,and this must be hard
with the children,just love them,,gentle play with them that's all they want,
Hugs to all Sue

Well, she is still doing testing. I have a skin biopsy next week and the autonomic testing the week after that. I'm still taking the multi and the omega and flax. I'm concerned about not taking calcium and vit D, so I ask about that. Maybe she's concerned about toxicity?

My family and friends are all like wow you must be so relieved. They have no idea. I don't know what I'm dealing with yet. I am in pain. Yesterday my inner ankles burned all day, and my forearm, although less so. I am looking at medication for the rest of my life, medicine that probably won't even take the pain away.

I'm a researcher/writer. I've been doing a lot of research and it's just been more upseting. No hope for cure. How bad of a condition do I really have? Real Age.com, Dr. Weil, they say just meds. Even my Nutritional Healing book which has everything, NOTHING for neuropathy. It's like I feel like I'm screwed.

I'm sorry to whine to you all. Really, I am. Thanks for listening. I'm not usually a whiner.

PS Mrs D.
I did not take cipro or that other drug. But I'll double check with my PCP.

I've spent the last 8 months having my ankle imaged, MRI, etc. My tendons are all in tact.

Thanks,
Kris

This is a good thing....that you are a researcher and have experience looking for answers.

Those who do the homework, (the stuff ignored by the doctors) are the ones who often see the most improvements.

There are several parts to PN. Identifying it (typically what the doctors do), and figuring out what is causing it (some doctors will do this), getting symptom relief, and hopefully healing (whether this is IVIG or nutrient support to encourage nerve healing.)

It would be helpful if you can recall what happened immediately before your first symptoms appeared.
Did you have a viral illness? Come back from a trip?
Overdo exercise? Have a vaccine?

And don't forget to request a heavy metal panel.
Arsenic specifically can be in water supplies or inhaled from burning pressure treated wood. A woman in my area got arsenic poisoning from playing softball on a contaminated playground! Lead, mercury, and cadmium are also culprits.
Hobbies and also stripping or refinishing furniture may cause PN.

Thanks, I will try to remember. I was feeling awesome. I was exercising daily but didn't think I was overdoing it. I had started taking daily two mile walks about 7 months before, and about 2 months before had started getting up early to walk or do aerobics. They were light workouts though for the most part. I'll request my records from my PCP. I'll also see about whether they've checked me all out for diabetes.

I'm a little worried about these tests. I'm worried that what they find will be even worse than what I'm now experiencing. I'm turning my cares to God. Little worries keep creeping in. One day at a time, one day at a time, one day at a time....

My neuropathy started
 

when I was about 30 yrs old.

It is not a big deal for me now. I have some discomfort mostly at night, but it is very minor compared to what it WAS...which was terrible. Mine was due to hypothyroidism that was not
diagnosed properly. AFter getting thyroid replacement over 15yrs later, my pain was mostly resolved within a year.

I still have some burning occasionally, and arthritis issues, but they are minor now.

There is a thread in the stickies about improvements.
http://neurotalk.psychcentral.com/thread43699.html

The peripheral nervous system does regenerate with time.
With continued damage from continued exposure to the agent causing it--- or failure to treat autoimmune issues, or discovery of a genetic hereditary cause...these are the more negative scenarios.

I totally agree w/Mrs D about Thyroid!
 

Tho hypo-thyroid isn't my main issue these days [I've others], I did start to have hypo thyroid issues about at your age +/- a year or four? I was lucky with my GP at the time who did a FULL thyroid panel on me and was quickly put on synthroid...It then took a few years to tinker the dosages to just rite.
But if only the basic thyroid & T-3, T-4 are done, not a whole lot would show up. To make it easiest on yourself? Be sure, if you get the test done, to FAST and have it done early in the morning! Otherwise, like other basic tests, such as simple blood sugar tests, the #'s will be skewed a little to a lot bit.
I'd really hate to have you going from specialist to specialist tho? A really good exam of your ankles does appear to have been done and no visible 'structural damage' seems to be present, Consider that A GOOD thing? Visit this web site [click on the blue part] to learn about what the docs are doing and why: http://www.neuroexam.com/content.php?p=2
Having a CLUE as to what they are doing is half the battle in my book>
I understand the anxiety. I also understand as do all here that the PAIN and fear it all creates is something most folks [unless they experience it] DO NOT GET! It's like cancer? Since I've that too, it's surprising how many cancer folks ask ME about the neuropathy stuff! Mainly because their docs don't do anything other than say 'live with it'. We don't have to. BTW? My cancer came long after my PN!
You are going thru the beginnings, it sounds, of a good diagnostic work up. Don't worry about it all until most stuff is eliminated. The process is one of ELIMINATION.
So hang in there and keep getting those tests done! Knock things off those lists! Have faith, and maybe it IS something simpler than immune issues or those other horrid thoughts you've been having. Save them for later! Work on diagnosis, living right and hugging your kids and your hubby! Every blessing in this world is likely right there to hug! Think positive things for now and get stuff done as best you can! Special thoughts and good ones for now - j

Whine?? WHINE? I don't consider you to be whining at all. Not a bit. And even if you were whining you're entitled. At least for a while and every once in a while thereafter. :wink:

I would ask your doc why no supplements, etc. Is there a specific reason? Or just out of touch and date info? Check out the stickies here at the very top of the forum. The very first one, "Neuropathy does improve" has much important info.

I understand exactly how that feels. I still have days where it gets me really down. "I'm going to have this for the rest of my life". A cure? Maybe...again, read the first stickies.

And you found this board. That was the miracle for me! Late one night, or very early morning, again I couldn't sleep for the pain. Sitting at the computer crying trying to find some answers and I stumbled on this message board. It's been a lifesaver, literally. Now my pain is decreased about 90% overall since finding this 'place'.

For pain relief ask about Lyrica...and also Tramadol if the pain is that bad for you. Some people do well with the opiate type pain relievers. They never did much for my PN pain. Pain is very subjective for all of us. You'll discover that most of us take some combination of meds for the pain. I have RLS with PN. I was taking Mirapex until just recently (long story why I took a break from it and related directly to my smoking quit). And my best friend, Tramadol. Tramadol mutes the PN so wonderfully and did work on some of the RLS symptoms as well. Oh! Sorry, RLS = Restless Leg Syndrome. The Mirapex was truly an eye-opener for telling the difference between what was PN pain and what was RLS.

And please don't be ashamed or worried to ask your doctor for adequate pain relief if that's what you need. You have the *right* to adequate pain control. And if that doc won't prescribe it you need to find a doc that's better versed in pain management and not paranoid about actually prescribing the pain killers.

Welcome to the board! :hug:

Good advice
 

You've gotten a lot of good advice already, and you seem up to the task of taking some control over the future of your diagnostic workup and whatever treatment.

Please make sure you get a complete workup for neuropathy, although, I have to say, THIS DOES NOT SOUND TYPICAL.
It really sounds a bit odd for neuropathy to have it start at an ankle, and sort of settle around it, and then go to the arms.

It could be an inflammatory neuropathy, so you should get your neuro to do a full workup for it.

I've just discovered that lizajane.org is still down (we were having a server problem that I thought was solved), but on that site I've listed all the tests one needs for neuropathy, with a checklist to go through with your doctor.

Have you had your iron levels checked as well as B12 and folate?

Thanks for all your advice.

The ATYPICAL aspect of this has haunted me from day 1 in November 07.

I'm not sure how to get a work up for "Inflammatory PN". Do I just ask for that. And a "autoimmune panel"? Is that all bloodwork or what?

I'll be sending the doctor an email so I want to be as concise and non-idiot sounding as possible.

In the interim, in the next two weeks I"ll have the skin biopsy and the autonomic test (three hours). Monday my PCP is doing a regular fasting bloodwork, and I'm wondering what I can get them to add on to that re: B12, folate, etc.

Thanks,
Kris

I'm sorry,....
 

It's a week-end and some of our regulars are on a summer sabbatical.

For an autoimmune neuropathy, I'm going to try to give you some of the tests to ask for, but I'm not sure of all of them. I'm just hoping one of the experts will pop in.

This site seems to have the best summary that I can find tonight. http://www.questdiagnostics.com/hcp/...20Neuropathies I'm sorry I can't just list them for you. My eyes are giving out. Can't do much more on the computer tonight. Keep checking www.lizajane.org . It's the best I know of for summarizing these tests in a consise manner. The site seems to be having some problems tonight.

Billye

Billye

It is a pity that LizaJane's site is down...
 

but this site could be useful in terms of diagnostic testing - tho not as complete.
http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab
Found another portion of this web site that mite help as well:
http://neuromuscular.wustl.edu/over/labdis.html#Ab
IF you aren't careful you mite just lapse into 'doctor-speak'!
It will at least give you an introduction to all the different kinds of tests done for all the different reasons. - j

Thanks for the links! My neuro will again tell me to "get off the Internet." LOL

Your doctor will tell you to "get off the internet"??

How typical. It' too bad that doctors and patients can't WORK TOGETHER, whether it's using the internet for information gathering, or just to ask questions of the doctor.

I have had only ONE DOCTOR IN MY ENTIRE LIFE tell me to go ON the internet.

It was a dermatologist. I had some lesion on my hand. He takes one look at it and says: "Melody, do you know how to go on the Internet?" I laughed and said 'Are you for real, who doesn't??"

He writes on a piece of paper "Granuloma Annulare". (I'll never forget that name).

He says "sometimes it's called RINGS". This is what you have. I'll freeze it off today, it will scab, and we'll see what happens later on, But go on the internet and you'll see people WITH REALLY BAD CASES OF IT. You'll see how lucky you are".

So he freezes it in one second. I go home, I go on the internet and I saw exactly what GRANULOMA ANNULARE can do to a person's body. I had exactly one round example on my left hand.

After he froze it, I had a shadow of it for one year. Now there is absolutely nothing on my left hand.

Mind boggling.

And what's even more mind boggling, is that my doctor (who is over the age of 50), told me to GO ON THE INTERNET.

You gotta love docs who do this!!!

Hi Kris...
 

and welcome to this forum!:D

I am sorry you are experiencing pain and also suffering anxiety from dealing with this period of uncertainty.:hug:

I, too, think you will find this forum extremely helpful!:D

I agree with others in thinking you need some of these nutrients and hope your doctor is willing to explain why she wants you to withhold them just now?

I have found that docs telling people to "stay off of the internet" tend to think the person does not know how to discern a good/reliable resource from a not-so-good resource... which is an arrogant attitude, if this is the case!

You are so fortunate you are used to researching information! This will help you tremendously!:D

I am reasonably intelligent, but I still really find the assistance offered here so very helpful to me when I am trying to understand all of this! Others here are more intelligent than I am about all of this!

A part of my difficulty understanding may be fatigue and pain from increased illness and it also might be partially psychological, as in being tired (frustrated) from being ill!:winky:

It's always great to have others to share information with and to engage in mutual support!:grouphug:

Again, welcome!:D I don't have anything to add, except... keep on asking questions whenever you wish to do so! Someone will try to help you!:hug:

Back up
 

Liza Jane's site is back up. www.lizajane.org

Billye

Thanks again everyone. I just got back from a wedding tonight. I have been on my feet all day, literally. I think the neurontin must be doing something.

I have a question. If I'm on my feet a lot, and the "problem" area swells, does that mean I'm doing more damage?

BTW, my doctor advised not to read about RSD so much on the internet. I was very tearful in her office and afraid that that's what I had. There's still some uncertaintly in my mind, and we'll have to wait and see how these tests go. But I just wanted to say that I had myself worked up to a point of crying A LOT, even during the appointment, and I was also QUOTING HER from articles online :D, regarding needing a nerve block. I think that's why she said what she did about not spending so much time researching RSD online. I know what I said before implied differently.

I don't know if any of you are from Boston, but I'm seeing Dr. Oaklander at Mass General. I was lucky to get an appt. (again, crying to the scheduler), and my next one isn't until 9/17 although they assure me we'll be "in touch" after the testing is done in the next few weeks. The other neurologist I will probably see for a second opinion is Dr. Didier Cros. My foot/ankle ortho really like him and recommended him.

Thanks again. YOu all have been very welcoming and helpful. Good night -- I'm bushed -- and so are my feet!

I really can't read the internet
 

Tonight I googled "small-fiber polyneuropathy" and had myself in near hysterics. I still haven't had the biopsy or the autonomic testing, so many questions remain. And reading about this online gave me visions of ... well, really bad visions. :icon_cry:

I did have some bloodwork done. The lab worker didn't have anything for "autoimmune," but she did do B12 and folate, etc. Both are in normal levels. The only thing low was Vitamin D so I started taking those supplements again.

Tomorrow is the biopsy! The biggie I think will be the auntomic testing.

Anyway, thanks for the stickies on how neuropathies do improve. It helped me tonight

Hi.

Do you remember what your B-12 levels were? What the actual number was?

What THE EXPERTS consider normal IS NOT NORMAL.

My number was 2000 at my last blood test. Don't be shocked. It's how I fight my neuropathy and it fights it just fine.

So if you can tell us your B-12 number, somebody will explain it to you.

Melody

It is 720.

Thanks!
Kris

:hug: It's real easy to scare oneself when reading online. Post here often when you're feeling that fear. It really does help to know there are people here, real live people, that know exactly where you're at and what you're going through.

And even better, there's real help here too. Lottsa of experience from many kind and compassionate people. :)

Hi
 

We have all had such pain nights we would yell are you there,aand some
dear one would whisper i'm here,what's wrong. pain oh the pain,or I can't sleep. So we been there done that,but mybe not we learn from each other. But most of all ,you can go crazy scareing yourself on the internet. I don't have to tell you that but I will tell you these are wonderful
bright people here at NeuroTalk. Summer can be of and on.I'm just about done for treatment of cancer.Good luck with your tests. hugs you all Sue

Thanks Kris.

Okay People.

Any comments on a B-12 level of 720? (Like I said in my previous post, my number is 2000)

Thanks much

Melody

Over 600 isn't all that bad. I'd say that 720 is a 'low normal' reading.
Couldn't hurt to supplement, though.
I'd take sublingual methylcobalamin 2000mcg/daily

Hello Kris,

I have had my symstoms for over 10 years, I have no feeling at all in my feet which makes me lose my balance once in awhile, the numbness is up my leg to mid calf and my fingers are getting numb also. I think what I would like to say is that not all is as bad as you may think right now. I know how awful it is to have someone tell you there is no cure and the pain will get worse. But I have found my own way to deal with this disease. Last year I went to the Cleveland Clinic for a 2 opinion. I have stopped taking all of the medications and I am starting over again. Its been tough and some days the pain is more than I can stand, but I have found that working out really helps me. I'm not able to walk like I use to and I can't do aerobic any more, but I have found swimming and I have to tell you its like a wonder drug for me. I feel strong and I'm able to swim laps, I started doing 1 now I can do 20. I guess what I would like to say is don't give up, and only you know how you feel all the doctors in the world really don't know the pain we feel. I hope you find what ever will work best for you, but can always come online and find someone who will be here to give you some great advice and just listen.

Have a great day,
Kathy

Questions
 

Thanks to everyone again for your kind replies. I just have a couple of questions.

Liza Jane: you mentioned you think this is an inflammatory PN. What does that mean? How do I get tested for that -- is that part of the autonomic testing or is that bloodwork? My lupus score on my blood work was just above normal so I'm supposed to schedule with a rheumatologist too -- told that will take forever to get an appt.

Mrs. D: Are you a doctor or clinician of some kind? I'm asking purely out of curiosity.

to everyone: Do any of you have color changes to your skin? The top of one of my feet turns red and purply sometimes, and I have bright red patches on the palms of my hands (no pain or numbness there.)

I just bought some of the capcaisen (sp?) topical yesterday and will see how that goes. Autonomic testing is Thursday. PRAYING for a normal result on that. My stool has been lose for a few months (I know, TMI) so I'm praying that's not related.

Thanks again everyone,

:hug:
Kris

Vitamins
 

I also wanted to mention that I've started taking my regular vitamins again. My vitamin D came back "mild deficiency" so I'm taking that and calcium again.

So I'm taking my multi, flax, omega 3, calcium and vitamin D, vitamine C/E, and will start evening primrose again today too. I reread the doctor notes from my neuro visit and the vitamin thing wasn't on there, so I'll just say I didn't hear her.

good luck with capsacin...
 

Not many here, myself included, like this burning ointment.

If you have burning, I suggest you try Biofreeze. This is cooling.
I was given this in physical therapy a few years ago..it is a wonderful symptomatic reliever. There are some online sources, which can be much less expensive than buying it locally.
It used to be restricted to chiros and PTs, but it is escaping into the marketplace now.
This is their website:
http://www.biofreeze.com/
I do not buy from them, they are too expensive however.
The Ilex in it is also called Yerba Mate...which is a tea very popular in S.America, more used than coffee, in several countries. It has healing properties and is also an antioxidant.
Even tho it is listed as "inert ingredient" I think it is very active in the beneficial effects of the Biofreeze. Just my opinion.

I don't advertise my profession online due to my liability insurance. Most people figure me out quickly, anyway.
I moved my older avatar to my profile...hint hint.

yerba mate
 

I'm familiar with yerba mate. A friend of mine from a few years ago drank it. I think I'll get myself some. Do you drink it Mrs. D?

Thanks for the info on biofreeze.

Best,
Kris

Yes, I have had it now for about 2 yrs. A friend sent it to me
for Xmas, and I found that it totally fixed my gall bladder problem (for now). I've had lots of tests, scans showing nothing but I get episodes of pain/gas from it.
Surprisingly the Yerba fixed it. I only use green unsmoked type. It is made by EcoTeas which I buy online in bag form.
I found an extract in capsule form, also, which I use if I am not in the mood for tea. It is called Green Mate, by Jarrow.
It works just as well!
http://www.iherb.com/ProductDetails.aspx?c=1&pid=194

I found PubMed papers about Yerba Mate being a chloeretic which explains the GI improvements with it.

If you decide to use it... only buy the green type, the smoked is implicated in oral cancers...due to the smoking etc. (like other smoked foods etc). People in S.America drink this avidly...consuming huge amounts daily...I only do one tea bag or one capsule daily. That seems plenty for me.
Don't heat the water really hot, because that destroys the antioxidant and other nutrient benefits. (no boiling etc).
EcoTeas have a nice website...you can Google that easily.
Yerba Mate has been tested and found to have twice the antioxidant content compared to green tea!

I really like it, and it has been very therapeutic for me.
It appears to have a mood lifting quality...without caffeine type jitters. This helps alot with pain issues, I think. It supposedly has some caffeine in it, but I can't feel it. Perhaps the caffeine is complexed to an organic molecule, to lessen its absorption rate. I am very sensitive to caffeine!

inflammatory?
 

I didn't actually mean to say I THINK it is inflammatory, just that it isn't typical for anything in particular, so perhaps it could be. The testing for inflammatory neuropathies is a combination of blood work, plus a spinal tap.

I saw your B12, which is lowish normal--but you don't list B12 among your vitamins. Are you taking it?

Another question
 

Do any of you ever get a deep ache, that feels like it's in your bones?

Thanks,
Kris

you know Kris...
 

The term peripheral neuropathy encompasses many presentations.

When a nerve is entrapped or caught up in another process, it sends pain signals. When this becomes excessive then we say there is pathology in the nerve-- neuropathy. Since it is not in the CNS it is peripheral.

Many PNs start as sensory ones in the distal parts of the body.
(feet and hands), and may progress up toward the spinal cord.
This is the metabolic type, like I had and like diabetics have.
Numbness, tingling and pain follow, and includes many mixtures of all the symptoms. Then severe pain in the whole foot may result. (then sometimes total numbness, depending)

From your descriptions, you have pain in the ankles, and now coming to an arm? This anatomical difference suggests that "something" is causing your nerves in your ankles compression or inflammation. I know when my knee flares up, it compresses the meniscal nerve, this happened to me this week in fact.
So I slap on my Lidoderm patches for a few days in a row and then it quiets for me.

I also have a bad ankle...in my left foot. I get pain in the front of it sometimes, and I know that is related to two things.
A surgery I had when I was 12 to remove a tumor (cavernous hemangioma) on the top of my instep (a messy procedure because there were no lasers then) and a horrible spider bite I had about 6 yrs ago. Since that spider bite (which gave me pain for a good 3 months), that ankle is stiffer and will pain me if I ride a bike at the gym for more than 15 minutes. In fact I can only do 5 min sessions, with a rest inbetween, or else! So I think there is an adhesion in there, and when I tug or pull it with movement, it HURTS. When this happens I use Salonpas patches on it. (these are OTC and very good for
minor arthritis or minor inflammatory pain. I have been using these for years, since they came to US. They have been very popular in other countries for many years. Because they don't advertise on TV many people here don't know them. They are far better than the BenGay or IcyHot type we do see basketball players pitching lately.
http://salonpas.us/

I only use the ones with methyl salicylate in them (they make several types). I find these better for foot/ankle and toe arthritis than taking oral NSAIDs or Tylenol. I personally prefer keeping meds to a minimum if possible. So far I have been able to resist RX meds, and I have longstanding PN. I do not have progression from it, but I do have worsening arthritis which causes it own pain profile.(and that confuses the issue, when you are new to it...it is hard to filter them out from each other as which is causing the discomfort.) This is why I use both type of patch at times.

You will want to be careful with heat on those nerves. I would be doing an ice treatment for 20 minutes at least each day.
Keep a journal to show what triggers you. Activity? new shoes?
viral infections? certain foods? Don't get the flu shots.

You are the best advocate in the treatment of your pain. The doctors can only go so far, and offer what they know. Once you have a solid diagnosis (and many are not), you can proceed to feel better. You are in your body 24/7... the doctors cannot anticipate YOU and your perceptions. I have found that being observant and open, are your best tools.
And also patience, since healing takes a LONG time.

I'll sum up with a personal story. I have a friend from one of my jobs, (I work contingent mostly so I can have my summers off for our remote home in the far North). This gal has 3 kids.
Her 3rd was a later in life baby, she had him when she was almost 40. After his delivery, her ankles went out on her. She told me she had such pain, she was crawling on the floor...couldn't walk. It turns out the 3rd pregnancy set off an autoimmune Rheumatoid arthritis for her. It spread to her wrists also, and some in her neck. So she was put on methotrexate, and finally the injectable of it, plus Humira.
For pain she finds the old fashioned drug Salsalate (Dicalcid) most effective for daily pain. Her ankles remain swollen and she wears slip on shoes for them (no straps). She can work effectively and
with little discomfort. Sometimes she wears a wrist brace. Prior to this last pregnancy she had NO symptoms. So inflammatory arthritis is a sneaky thing.

So while you have those conduction studies and biopsies, think also that you may have either Rheumatoid arthritis or some inflammatory tendon thing going on there. Your pain is concentrated there, and is indicating "something". And sometimes it takes a while to understand the cause.

Thank you Mrs. D :hug:
 

I appreciate your thoughtful reply. I really do.

One of my fears is that this is RSD. I'm not sure if my pain is severe enough, I don't know. Many RSDers have been telling me it sounds like it. My doctor, Dr. Oaklander at Mass General whom I saw a few weeks ago, said she doesn't think it's RSD but small-fiber polyneuropathy. I'm going to see an anesthesiologist/pain doc at another hospital on Tuesday. He specializes in diagnosing and treating RSD/CRPS so his second opinion should be helpful.

My PCP also advised me to make an appt. with a rheumatoid-ologist (sp?). I'll do that tomorrow. My bloodwork looked normal for rheum. arthritis, but my Lupus result was an 8 and I guess the top of normal is 7.5.

My foot ankle doctor, the last time I saw him on 6/13 said whatever I have going on is "highly unusual," and he said, "to offer you some guidance, the next step will probably be an MRI of your brain and entire spine."

My neuro hasn't mentioned this. I asked her about the MRI in an email last Wed. but haven't heard back.

This is just a scary time for me. That's all there is to it. I'm trusting God and doing my best to do the next right thing. Your advise and support (and that of everyone here) is like a life line.

Thank you. :hug: