OK, leaning towards Neuropathy

[jena1225]

As you all know, I have been trying to figure out the what is causing the different types of pain I am having. I do have Neuro appt on Monday.

I know I have a few different types of pain, but I am curious about this kind.

For those of you who DO have it, can you tell me your personal experience with it?

As for me, it is like that "toothache" pain people have described, but almost all over my body. Very deep, not on the surface and not the muscles (I have that, but pretty sure it's from spasticity).

It makes me very irritable and is not "always" horrible. But, when it's bad, it's really bad and is always there, at some level.

I am not out to dx myself, and have a feeling my Nuero thinks it is Neuropathic as well, as he has me on Lyrica and has "mentioned" it (he does not talk too much, but Monday I am going to make him explain the details to me). I also have found that if I don't look into these things, I may never have a name for it, therefore will always wonder if I am doing what I can for it.

Thanks to all for your continuous feedback with all of my questions. As it does seem like I am asking a lot, my pain has progressed just in the last few months, and from reading all your posts, it is clear that I am not being dealt with in a straight manner. They are not giving me details. You all have helped me know what to ask my doctor's and also to help pinpoint my different pains. Thank you! (((HUGS))) :D

Any feedback on the above is, again,appreciated. And I hope you all are doing well :)

[debhun]

You can go here it may help.
http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm


Happy Easter
Deb

[Kathi49]

Jena,

Lots of types and lots of causes! :)

You know my experience with it as being small fiber PN (just one type; the small c fibers). Anyway, mine causes a burning in the hands and feet and my ankles just kill me. Also, I have a Neurologist appointment next Friday and I am going to ask her more about it myself; along with other issues.

Maybe someone will come by that has another type or at least can give you their experiences. You already know my story. :)

Yep, and Deb just sent a good link explaining it.

[Mark N]

jena, you described one of my pains and Cymbalta is what controls it for me. My MSContin controls my spinal pain but the other pain was driving me crazy and Cymbalta got it under control for me. Good luck with the NS appointment.

[Kathi49]

Jena,

I have an appointment with my Neurologist this Friday and am about ready to ask her to run some more tests besides an EMG. It seems like this small fiber PN has turned into something different. Thoughts that go through my mind are CRPS (used to be called RSD), Central Pain, CIDP, polyneuropathy. I have no clue! I was told that RSD is by far the worst. I CAN stand to have clothes, shoes, etc. on. and anything touching my skin is okay. Don't have an issue with that. So, I highly doubt RSD. Central pain? Unclear on that too although two doctors now have told me this. This feels like you said, a deeper pain, still neuropathic in the legs but arms feel very weak although the pain is gone. Or is it still all a radiculopathy?

Right now my lower legs are hurting badly and my feet are sweating up a storm which tells me, part of the sympathetic nervous system. And if you were to look at my feet and legs; perfectly normal.

I have taken an anti-inflammatory for the last 3 days which helped. But, then here comes the IBS again and in the form of constipation...not the other. I just mean lower cramping. So, I didn't take one yesterday. In the past the docs said to take one every other day. I may end up doing just that. This is another reason I prefer injections over taking oral anti-inflammatories. And forget the Medrol Dosepak! Last time I took that I ended up in the ER! Anyway, yeah, the injections can cause some stomach upset but at least not on a daily basis.

So, I have a blue million questions for her on Friday and she is doing an EMG and a consult. I know she has no problem re-running all of these tests I have had in the past. But if it all comes down to neuropathy again, all I can do is to treat the symptoms unless she has something else up her sleeve. :)

Sorry to hijack your thread. But yesterday was pretty bad pain wise and I know what you and Mark mean by that deeper pain. For me, it is all over the place. :(

[curiousforever]

The stuff in my arms isn't very deep - but I know from before that it's nerve pain. I can almost trace the stupid nerves from fingers to shoulder.

The leg is the same.

Mine I guess you *could* describe as a toothache - haven't had any myself so it's hard to figure - maybe to me it's more like early labor pains lmao. Some are longer throbs than others - and sometimes it's there under the surface.

Like today- between my arms and my upper back - someone else is going to have to finish laundry. I must have overdone it yesterday.

[Wendyk]

Hi Jena,
I have been coming to this site for a long time and have read your posts often. I identify with the type of pain you are experiencing. I have been diagnosed with MS for 14 years, however my symptoms (optic neurotis, etc.) date back about 25 years. About 6 or 7 years I started to experience tightness around my waist (MS HUG) - and hip area. I identify with the burning and DEEP PAIN you write about. Someimes it feels unbearable. I take neurontin and have tried lyrica, cymbalta and various other meds with no help. I still neurontin which eases the burning a little. I also see a pain doctor for a couple of years and have had to up my meds to something stronger which I did not want to do. The meds take the edge off a little. The PM diagnosed me with neuropathic pain which is extremely difficult to treat. I am happy to have found this site and do not feel so alone with my pain. Thanks for being here.
Wendy

[jena1225]

Yes Kathi - all over the place. I do hope your appt goes well! I have never been tested for Nueropathic pain, I just thinks since I have MS, they can assume that is what it is. Plus, it has gotten so much worse since my last appt, I will be asking moree about it tomorrow at Nuero appt!

Nancy - Nice to meet a fellow MS'er on the CP board! Although not glad you are in pain! How does your PM treat your pain? I am assuming they treat you seriously. What type of tests did they do for you?

I am glad you finally posted after lurking for a while :) It's a great place :D

I was dx-ed 14 years ago as well - Labor Day Weekend 1993...

[Kathi49]

Jena,

I wish you well with your appointment tomorrow. Be sure to ask LOTS of questions. ;) And post again as soon as you get back! :)

[jena1225]

The stuff in my arms isn't very deep - but I know from before that it's nerve pain. I can almost trace the stupid nerves from fingers to shoulder.

The leg is the same.

Mine I guess you *could* describe as a toothache - haven't had any myself so it's hard to figure - maybe to me it's more like early labor pains lmao. Some are longer throbs than others - and sometimes it's there under the surface.

Like today- between my arms and my upper back - someone else is going to have to finish laundry. I must have overdone it yesterday.


Yes,I suppose you could also describe it as labor pains, never thought of that one! But instead of every 1 minute, it's constant. Like just wanting to lierally crawl out of your own skin.

I have to say that my back is probably the worst of all.

Kathi - thank you :)

[Texan123]

Did you find out anything today from your dr. Jena? Or did you go?

[jena1225]

Hi Texan, and thanks for asking :) Appt went well I suppose. I am on new med regime, so we will see :)