Help explaining problem to physical therapist
 

So I went to physical therapy for the first time yesterday. I have some kind of peripheral neuropathy but I don't know what kind or anything about it because when I was diagnosed, all they gave me was those two words--"peripheral neuropathy" and no prognosis, no information about what to expect, no details. I'm angry now, after reading all your posts and see how much information I SHOULD have been given. (But I'm seeing a new neurologist in 2 weeks so I'll get more info then, thank goodness.) I'm only 27 and I'm debilitated by pain and weakness so I decided to start going to PT--I went, and I explained my problem to Barb, the physical therapist, and for the rest of the session she kept referring to my "muscle pain" and how we were going to have to work on my "joints." I feel frustrated because this is in NO WAY muscle pain and I think she looked at this young woman and had no conception of the possibility of it being something more serious, despite my assertions. How can I explain to her what is going on? As a side note, I do have Ehler-Danlos syndrome (means I'm extremely double-jointed) so I do have joint problems, but that is not the reason I went to see her!

i cant think of anything a PT could do directly for neuropathy....she can address the joint and muscle issues....and that is about it....hopefully that will help indirectly

when I was in PT
 

for my leg/hip injury... we talked about many things.

My PT said that Anodyne was the most successful intervention
they offered for PN.

http://www.diabetesincontrol.com/annodyne/dest.php

I went to PT for my neck and hand(s) after a fall a few years ago, and was more informed than you at the time,
I wasn't at all surprised to find that the therapist had no clue as to PN
& had never heard of it before. Not only that, I gave her some websites to visit
for a better understanding and the next time I came in, found that she didn't even bother.
Not in her realm. Four visits and I was outta there.

Please don't be angry?
 

I've found that when dealing with other docs about my own immune-PN issues I've got to explain in 30 seconds or less [the attention span of gnats, I believe?] what it is that requires me to see them that could complicate most simply treated medical issues.
My first neuro was a 'live with it' type. It took me months of distress and very limited mobility to figure out I had NO clue what a neuro really was nor if this one was competent! I've seen eight neuros in the last 5+ years of my neuropathy and I must say that four I would see again but the other four aren't worth the time of day. Sooo. Second opinions have even odds of getting you somewhere? It also depends on where you live too-some areas of the US or even the world for that matter are more well versed about PN than others. You simply have to keep trying and maybe you can get either some help or relief.

Back to therapists? Most PT people encounter neuropathies due to severe diabetes, cancers or strokes. The education of them should be done by 'representative' groups on our behalf? But most of that and of docs has been haphazard and well, wimpy. Therefore, it's up to YOU to know about it, come armed with basic MEDICAL DIAGNOSTIC websites such as are up in the 'stickies' and just give them the first pages...they are either gonna read and learn or not...IF they read and learn? All the better for you! But a good PTherapist? Should be a good listener and then proceed to learn on their own...I hope.
We have to be the educators of our PN issues? And be able to back things up with 'professional' type facts. Plain and simple.
So many of us have learned this the hard way, but learning from all the super people here has helped me, and in turn, I truly help you are able to help yourself! Hugs and hope! :hug:'s - j

Sigh...
 

I live in Iowa City, which has one of the top University Medical Centers in the country, particularly neuro. So that either means the neurologist will be awesome and really listen, or will be so full of herself and so used to seeing cookie cutter cases that she won't give me more than those 30 seconds.

As for my PT, you're right, maybe I need to come in armed with some articles, but I'll have to do it carefully so as not to offend her. I'll have to think on that...

I do think PT can help with PN, especially with the weakness part of it. But only if the PT acknowledges that it's not "muscle pain!"

Definitely
 

Sooo. Yep, yep and yep! Go for it... - j

Physical therapy
 

Okay, I can totally relate to your physical therapy story. I would be very careful who I allowed to work on me they would need to have a strong nerologic background or spinal background. I am in physcial therapy with nerve pain, and the goal is more strenghtening. Definately do not allow someone unaware of the nerves to manipulate the are....I would worry about harm. I have been living with severe nerve pain/pinched nerve from my neck since March 08...not much really works. It just makes me feel better:hug:

A PT that uses Anodyne therapy will know about PN. The therapy is very successful with diabetic PN and less successful with other types.

Anodyne
 

Okay I will bring up Anodyne, although I am quite certain she has no intention of using it. I asked her the other day if we were going to do anything other than work on exercises and go in the pool, and she said "No." Maybe once I see the neurologist and he gives her a report, she will be more useful.