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

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!

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.

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.

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!

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