NeuroTalk Support Groups - Anyone have issues with clothes? Or am I the only odd ball, LOL.

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- - Anyone have issues with clothes? Or am I the only odd ball, LOL. (https://www.neurotalk.org/multiple-sclerosis/39617-issues-clothes-am-odd-ball-lol.html)

Quote:

Originally Posted by kebsa (Post 222509)

It was suggested to you that your discomfort was not likely to be MS because it was intermittent- i can see the point of the post but i do not entirely agree. I also noite that someone said that you donot have confirmed MS- so my comments are based more on the concept of neuropathic pain/discomfrt regardless of the underlying cause/ neuro pathic discomfort certainly does not have to be a constant issue to exist- i am an RN plus a person with neuro pain ( my comments are based on both). I have a condition called Reflex sympathetic Dystrophy that leads to severe neuropathic pain, i am an amputee who sufferes phantom pain (also a neuropathic pain syndrome) and i have highly reactive RRMS with numerous neuropathic pain [roblems. The one thing that i know for sure about neuro painis that while it can be constant for some, it can also come and go- i will go for weeks without phantom pain only then to be kept awake for days on end with severe pain ( no rhyme or reason as to what caused it), it will be so severe that it feels i ma being hit with a cattle prod, it makes me yelp in pain. IF you think that this may be a neuro pathic problem ( you do not need MS to have such an issue- RSD is the classic example, it starts after minor injury but leads to extremely disabling symptoms)- talk to your Dr, there are no magic cures but the drugs such as lyrica and neurontin can make a very big difference. On the non drug idea, its is easy to try to avoid touching the area that hurts to avoid pain but ultimately this can make things worse, the area gets more and more sensitive to less stimulation- for example people with severe phantom pain will often minimise the discomfort by a techniqu e called counter irritation- in my case this means that when i get pain in my stump i will sit and continuosly lightly slap the affending area- gradually you no longer feel the pain but feel the slaps instead ( the NS can only transmit the one type of impusle at a time is the theory) some people will use TENS units to provide the counterirritation. Obvioulsy, if may not be a neuro thing, it could be to do with detergents etc- you can test this by eliminations. eg go back to just soap and water rather than powerful detergents, eliminate fabric softener for a while etc etc to see if it helps but also talk to you PCP about the issue, he is probably the best situated to look at the issue from a more global point rather than whether or not it is MS

One suggestion before I get to the question I'm going to ask. Can you break up the paragraphs some instead of having one huge paragraph? Some people with cog fog end up getting lost in large batches of text. (not trying to offend, just hoping to make things easier for people with the suggestion)

Ok, my question. Have you ever used a tens unit?

My mom is getting one monday (she has some spinal stenosis and some serious neurological pain in my back and legs right now)

Do the tens units always work, or are they only good for some people?

i have tried the tens unit and it doesnt work for me, and i also agree please break up the paragraphs, its very hard to read for a number of us, i do it too

i start typing and it keeps flowing and forget to break the sentences up, plus i dont use much puncuation to help show where my mindless thoughts begin or end.

peace

my apologies about not breaking the paragraphs up- i have been having to use voice recognition software as my hands have been spasming too much when i try to type- i am still getting used to it and did not really consider formatting as i would when i typed the usual way

i will try to make sure i make things clearer in future

Quote:

Originally Posted by kebsa (Post 222509)

It was suggested to you that your discomfort was not likely to be MS because it was intermittent- i can see the point of the post but i do not entirely agree.
...
neuro pathic discomfort certainly does not have to be a constant
...
i will go for weeks without phantom pain only then to be kept awake for days on end with severe pain ( no rhyme or reason as to what caused it), it will be so severe that it feels i ma being hit with a cattle prod, it makes me yelp in pain.

I did not mean to imply that MS neuropathic pain can’t be intermittent, because it is for me too. It was the TOTAL picture, as described, that doesn’t add up to a definition of neuropathy to me.

MX7’s clothing issue occurs for only a few days at a time + has been ongoing for many months. It effects her (itchy, tingling) where her clothes are more snug + severe pain is not the primary descriptive.

Is this the way you would describe neuropathic pain . . . because it definitely does not match my experience/definition in any way?

As you implied, there is no rhyme or reason to neuropathy. It most often lasts for several days to weeks, and doesn’t normally repeat in neatly defined areas (as was described by MX7). In your case, as an amputee, it may make sense that at least some of your particular neuropathy (phantom pain) might be more constant (experienced in one distinct area). This area of damage for you is very stable, but that is not normally the case with damage that occurs from our MS.

The most obvious reason that this is not likely to be neuropathy is that the “hurt” feeling was not adequately described or emphasized. We might all have different ways of describing it, but the overriding theme (if our “clothes issue” is from neuropathy), would be the severity of pain and burning sensations.

Even if a person had MS, I would not at all presume that this particular symptom, as described by MX7, is related to the disease. It just doesn’t add up to neuropathy, at least as I know it, and hence should not be ignored as “another symptom that nothing can be done about”. I agree she should mention it and try to find an alternate cause through her GP.

Cherie

Quote:

Originally Posted by kebsa (Post 222854)

That's ok. I've played around with the voice recognition software on my computer (for a school project in a desktop publishing class I took a few years ago) My computer's voice recognition program is kind of touchy...gets kind of aggravating to tell it to do something, and it either does something completely different, or it just sits there because it doesnt understand what I want.

Sometimes I'll type a huge paragraph too, and will forget to break it up before I post it...and then I'll have to edit the message and go back to hit the enter key a few times.

It just takes a little longer to read thru a large block of text sometimes because I'll get lost halfway thru it. End up reading one sentence over and over and cant find the next line for some reason.

If I dont give up like I've done on another forum where there's a person who posts huge blocks of text. Sometimes I'll put the text into my text-to-speech program and have the computer read it to me instead.

Quote:

Originally Posted by lady_express_44 (Post 222893)

I'm never very good at makeing my self clear in a post, It's not that these things come for only a few days over the past few month.

The waist issues only happened a few days in a row (been going on 3 or so years, and has happened maybe a dozen time or so) most of the time and it's never a blotting things. I just can't handle anything at my waste touching my skin.
The itching thing is just my thighs when my legs are numb and than not every time my legs go numb, just if the jeans are snug on my thighs.

What's been going on for months (everyday) is that I can't wear a bra hardly any more. The straps on my shoulders hurt (I'm pretty sure this is the fibro, remember I DO believe I do have fibro, I don't think I was miss-DX on this one - I have most of the tender points at every check up) but the back band gets me too. This just started up a few months before I started having the numbness from that point in my back and down and odd pain in my back.
I have tried wearing the strap really loss and have tried pulling the back of the strap very low on my back and it didn't help, I just can't handle having anything snug across my back right now.

The one thing I always point out to Dr.'s and nurses that want me to "rate my pain" on the scale of 1 to 10, is that my level of pain is so different from most. I tell them I have given birth to 7 children and have made it to 10cm dilated with no meds and still been joking around and laughing at that point.

Julie ... I sent you a PM :D

Quote:

Originally Posted by momXseven (Post 222942)

There is no doubt there is something going on, Julie.

This is not my experience with neuropathic pain though and if it pans out to be MS, you'll unfortunately know what I mean if/when that symptom gets you :( . . . I too have an extremely high tolerance to pain.

Cherie

Quote:

Originally Posted by weegot5kiz (Post 221211)

bras are not my problem, its my tee shirts worn inside out or backwards, can usually tell its on backwards, after to 6th or 7th time i tug at the neck cause its choking me

Wow! Me, too! :eek:

Quote:

Originally Posted by weegot5kiz (Post 221211)

bras are not my problem, its my tee shirts worn inside out or backwards, can usually tell its on backwards, after to 6th or 7th time i tug at the neck cause its choking me

LOL Frank!!! I saw Sienfeld last night on TV. It was the one about the "Bro" or the "Manzier".......LMAO at men who need support!!! YOU are too funny!!!