Hello peeps :)
 

We have discussed from time to time how hard it is if the people around you don't acknowledge your pain and disability. I think that must be one of the hardest things to bear, and it is unfair that you cannot enjoy a good day without worrying that they will think you are fully recovered.[/QUOTE]


Now that I think about it y'all are correct ! If I have a good day both my grown kids think I'm better and now I do try and 'hide' the good days somewhat. Wow. Eye opening.

We have a new 4 month old puppy, Angus, and I need a collar for him. I gave my daughter some money last night and told her next time she was in WalMart or wherever to pls get a collar for him. She was like, why don't you just run down to one of the dollar stores and get him one. She wasn't mean about it but it still makes me feel bad. I told her I would LOVE to jump in the car and go through all 3 dollars stores in our very small town BUT.....and she said Oh yea....you can't do that can you ? Nope, nada....haven't been able to since last April 2013. Weird how you can remember these terrible dates :)

I'm very thankful for everyone here. This is terrible to live with and I never seem to know what's around the next corner...which is scary. But there are people here that know and understand pain and the many ways it effects all of us. I am truly Blessed to have found this site and one very special friend that I love dearly.....You know who you are :)

Debi from Georgia

I would say you are venting a bit; gripe ..Not. You are dealing with some nasty issues. l haven't driven for a few years now. So far haven used wheelchair. The cane seems to work for me. Also deal with feet up to the butt. Not nice.

Any time you feel the need to express frustration, please do so. We are all here for one another.


Gerry

Debi,
Been wearing slide sandals with velcro for years. Unfortunately no support which I think adds to the leg pain. I am surprised you are able to walk barefoot. Ouch....that hurts even more for me.

I agree; staying positive some days are quite difficult. I don't know what I would do without conversations with God.


Gerry

I wear Berkenstock brand sandles. Any other shoe hurt within 5mins, but for some reason I can wear these sandles for an hour or more.

However, I've only had my pain for about a year, so perhaps I'm in the earlier stages.

I like to wear shoes that are as open as possible. Flip flops in the summer but they are getting more difficult. Seems I have to curl my toes to keep them on. In the house in the summer I go barefoot. In the winter I wear slippers. I don't have a lot of carpeting and my feet can't take the cold.

After, reading these post started thinking it is hard to share with others when I have a good day. I think friends and family just don't understand and probably never will. Can't say I blame them. If I didn't have this, I never would have guessed how bad it is.

Thank goodness with this site we all have others that understand.:grouphug:

I think part of the reason people don't quite understand the extent of our pain is because they can't see it. Also, if we said we had cancer they would get it! Our disease doesn't have the public awareness that other painful conditions have.

Before my medication was adequate, for the first time in my life I spoke of suicide. I told my mother that I wanted to live, very much, but that if this pain couldn't be helped, please don't expect me to live for decades this way.

You know, she nodded at the time and I thought she understood. Then, within weeks, as my pain started to show less and less as the drugs kicked in, she acts as though I'm normal. She just doesn't get that there is residual pain and that I can't stand up for long periods.

BTW I have a question if anyone can answer. I'd rather not make a new thread.

I've seen somewhere written that if you have neuropathy and then get a flu or cold, it's a lot worse. I've been lucky enough not to have had a flu this winter, but am wondering if anyone here has, and just how bad is it? If I get the flu, should I increase my Tramadol?

There are a good number of anecdotal reports--
 

--of stress, including that associated with flu, colds, or other viral illnesses, exacerbating neuropathy symptoms.

It's not certain whether this comes from just having one more thing to deal with, or whether some sort of immune mechanism is at work. Certainly, those whose neuropathy has a suspected or proven autoimmune component would be more vulnerable, as infection changes your immune status.

I would still consult with your physician(s) about upping one's meds if neuropathy symptoms got worse with an illness, in much the same way one would consult if one's symptoms got worse in general. I suspect that many physician's responses would be just as speculative as mine here, but at least that give you a little butt-coverage.

AussieDebbie
 

I've seen somewhere written that if you have neuropathy and then get a flu or cold, it's a lot worse. I've been lucky enough not to have had a flu this winter, but am wondering if anyone here has, and just how bad is it? If I get the flu, should I increase my Tramadol?[/QUOTE]

Now that you ask....lol.....just got back from my PCP a little while ago.....I've been bad for over 2 weeks.....spent days in bed with neuropathy pain in legs, both arms and as always the feet and hands. I had no idea what was going on.....then the upper resp / sinus stuff started and I battled that for a week before breaking down and going to the dr.

So for me I'd say yes......made everything worse. This is the first cold / sinus issue I've had since the SFN started. I usually only take 1/2 a vicodin at a time but I was using a whole one plus 1/2 a Xanax just to try and get through the pain.

Debi from Georgia

Hi Aussie,
I had a really bad cold not that long ago and my pain level raised a lot. I spoke my rheumo and was told that illness will increase my level of pain.
Hopeful

Thanks for your responses. :)

Mental note to self - do NOT get a cold, flu, or virus of any sort!

Glenn, as for the increase in Tramadol, I'm currently on 2 per day, and my GP has told me to use as much as I need but not exceeding 8 per day. So, there is plenty of room for me to use them if I need extra to get through a hard week or so. Thank you for your answer though, appreciated.