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Posted 3/18/2011 6:31 PM (GMT 0)
I am sorry I have not been around in several months to support yall but you have been in my thoughts and prayers. To make a long story short my youngest son graduates high school this year and my husband's job has relocated us to a different state. We have to be there by July first so there have been alot of boxing up, throwing out, and painting going on. My question is at the beginning of February my body started this burning/temperature reversal thing. It is hard to explain but one thing I do know is that taking a shower is like somebody dumping acid on me. It is excrutiating pain, and if I touch something cool/cold it feels like it is burning my skin. I was diagnosed with fibro back in the fall and this just starts now.  I felt it was kind of strange. My doctor has tested me for all kinds of things and nothing has showed up. Don't know if that is good or not.  He is now sending me to a fibro specialist and that will take about two months to get that apt. Just wondered if anybody ever had any thing like this.  I can't stand clothes on and I can't stand to be naked. Very miserable!

Thanks

Bay

Posted 3/18/2011 7:10 PM (GMT 0)
Isn't it weird how much fibro can be so different from one person to the next?

My issue is not the surface but just below. The temperature of the water isn't so much a factor but how hard the water pressure on my skin is. I cannot carry my purse on my shoulder because it feels as though it weighs 200 lbs. and is cutting its way thru. Cannot stand socks on my feet because they feel like they are restricting the mobility of my toes. I have to wear a bra but I buy the next size up and wear it on the loosest setting..........its funny how little everyday things are so different for us now.

so sorry that you are miserable and wish I could help.......hope your day ends much better than it started.
Posted 3/18/2011 10:01 PM (GMT 0)
I understand where you are coming from I had a time where a shower was just impossible, and lived with having long baths.
Now I can stand in one I hate getting out. It is like everything with Fibro it comes anf goes. Why? Who knows I can not bear to be touched my skin feels like it is being ripped of when I am touched.

Kathy

Fibro,cfs,irb.migraine
Posted 3/19/2011 5:35 AM (GMT 0)
Thank you for letting me vent and thank you both for your replies. You know this place does help you get off your hind parts and try a little harder just by reading that someone else is out there trying too. Some of you sound like superwoman to me. The day did end well and tomorrow I will try again.

Thanks

Bay
Posted 3/19/2011 6:25 AM (GMT 0)
Hi Bay~

I agree that this fibro thing is so strange from person to person. I've had times when shower water hurts and if one drop of cold water hits me it shocks my entire system. I too hate the 'bra thing' and since I'm home most of the time I don't wear one. I do if I'm going out somewhere but socks and a pair of slippers are fine for me.

I would make a guess that what you're experiencing is probably fibro. I'm no medical specialist, just sharing observations over the years. But if you've had all of the major tests it's likely that someone who deals with it has an answer for you.

One thing to consider is that you are likely doing much more physical exertion than you usually do. You said you are boxing, shoving and throwing out things to get ready for a move. That alone can make a 'normal' person sore. But for us it's a 'surprise package' as to how we'll feel. Remember to take it easy after those days where you're over using those muscles. Take long baths or showers to warm them up and relax those places that are extra sore. I hope things go well and that your strange pain goes away soon.

Hugs,
Chutz
Posted 3/19/2011 11:47 AM (GMT 0)
Very interesting thread.  Me thinks I will learn much from all of you! idea

 Cannot stand socks on my feet because they feel like they are restricting the mobility of my toes. I have to wear a bra but I buy the next size up and wear it on the loosest setting..........its funny how little everyday things are so different for us now.

 

I know some "myalgia's" are related to neuropathy.  These symptoms sound very much the same as sensory neuropathy.  They call it "sock and glove syndrome".  I have often called myself "the princess and the pea".  I used to have a terrible time with necklaces.  I can wear them now, but they can't be too heavy, if they are, then they drive me nuts.  Sleeves touching my elbows made me crazy, my socks used to come off the minute I walked into the house (I'm too cold now for that"..I cant stand pajama pants of nightgowns touching my legs while I sleep, yet the blanket is ok.  It's all very strange.

The bra size is interesting.  I wa sjust thinking this morning that I need to buy one a size bigger just because it's touching me too much.  They look fine, but I can feel them.  I don't like my pants tight, they touch me..so often times people tell me I need to start buying a size smaller.

As mentioned, some days are better than others.  Some days I change my clothes a couple of times to find something that isn't touching me too much.  I hate coats, too heavy, too much touching.

I relate to all of you on this topic and it's always nice to know you aren't crazy, that others have the same issues. yeah

Posted 3/19/2011 2:48 PM (GMT 0)
I am sooooooo smiling while reading your post about what you can and can not wear. Maybe somebody should come out with a fibro line of clothing. I think I embarras my children with the way I dress. Always a sports bra, I just seem to tolerate it better and my shirts have to be cotton or my skin feels like it is crawling, my jeans are so loose they are in danger of falling off but I do not show any of my underpants I promise haha. I can't wear a belt because that would make it too tight. Now here is the kicker. My husband bought me these special socks for Christmas and I love them. They are toe socks and they have no seams so they don't rub and they make my feet feel better because my toes stay separated and when they touch they burn/hurt. They are black in color and I wear them with flip flop type sandles because they are loose and easy to take off and own. Now that ladies and gentlemen is a fashion statement......hahaha

Gotta have it my way,

Bay
Posted 3/19/2011 5:27 PM (GMT 0)
smilewinkgrin  Love it!!!
Posted 3/19/2011 6:19 PM (GMT 0)
cry  I could have written that post myself. As far as the water goes at least. I was fine in my home in California, but my husband came home from iraq and I moved out to Georgia to be with him....and the water here (whicch happens to be well water) feels just like acid pouring on my skin!!! I dont know what causes it, but I am thinking it is some mineral or iron or something in the water?? Maybe in feburaury something changed where your wwater comess from that would cause it to have something extra and new in it?? I am even thinking maybe there is a bacteria or something .. thought I was losing my mind!
Posted 3/19/2011 6:30 PM (GMT 0)
that is too funny. I didn't even know that there was such a thing as "sock and glove" syndrome. And until I sat and thought about it, I didn't realize that I had so many "I cant tolerates....too many to list"
Posted 3/20/2011 3:42 AM (GMT 0)
Me, too! My daughters get so fed up with me and all the things I can't wear (can't eat...can't do...can't remember) - but they're actually very understanding about it.

Necklaces are usually out unless there's a turtleneck between me and them because they make me cold, even in the summer. Cottony material, always. Nothing tight, nothing heavy.

What a great idea, a line of fibro clothing! Some smart person could be set up for life!! Sorry, Bay, the particular problem you posted about isn't one I've had. It sounds awful.

Debbie
Posted 3/20/2011 10:43 AM (GMT 0)
Bayla said:

 It is hard to explain but one thing I do know is that taking a shower is like somebody dumping acid on me.

This did happen to me once, but I doubt is connected to your issue.  I had a hysterectomy 3 yrs ago, a vaginal one.  They of course, doused me with that yellow/orange antiseptic, all over my bottom, the backs of my legs.  I broke out in hives, the worst hives I had ever had.  To be honest, the hives were much more painful than the surgery itself.  Those hives lasted for months, and for months after they were gone, water touching that area was very painful.  Maybe it is connected in some way though, who knows?

As I read in this thread, I realize fibro symptoms have been going on for years with me, and I didn't realize that's what I was dealing with.  I can remember years and years ago when I would complain about this or that aching and my mom would say, "You are too young to complain so much about pain!"  Then years later she would say, "You might as well get used to it, it's the family curse!"  I used to wake up from dreams in tears because my hips were hurting so bad.  Even in the dreams, I was hurting..often times the kids and I would be riding bikes, or walking in the dreams and I would be crying to them that I just couldn't go any further.  Then I would wake up in tears in such terrible pain.

This is one of my favorite sayings:

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

Posted 3/20/2011 10:22 PM (GMT 0)
Thank you all for your input. I have been reading everything I can trying to figure out what I can while waiting to go see the specialist. From things I have read from yall and other places I am wondering if it is an allergic reaction to medicine or even food? I guess it wouldn't hurt to consult an allergist while waiting for the other appt. My symptoms also include swollen lymph nodes in neck and under arms. This happens off and on, not all the time. My PCP check them and seemed unconcerned. I also get in a really angry mood and I realize it but I can't help it. Enough of that for now. The best news is I slept really great last night, don't know why guess you just crash after so many nights of not sleeping. I woke up today feeling so much better and it is a beautiful day that God has blessed me with. No pain pills or muscle relaxers today so my mind feels clear. I am very thankful for today and for all of you.

Sending You Happiness and Love,
Bay
Posted 3/20/2011 10:44 PM (GMT 0)
Bayla....have you ever been tested for celiac disease, or tried going gluten free and seeing how you feel?  Lots of people have these types of symptoms when they can't tolerate gluten.

I wish I had known about gluten years before I did.  I have had issues my entire adult life and have only been gluten free for nearly 11 years.  I was vitamin and mineral deficient for so many years before finding out, now I can't absorb what I need from my foods.  I have to take supplements.

Don't go to an allergist though, gluten intolerance is not an allergy.  Ask your doctor to run a celiac panel.  If it comes back negative, then go gluten free and see how you feel.

Posted 3/21/2011 3:05 AM (GMT 0)
I was just going to try going gluten free anyway. I didn't think it would hurt to try and see. I will read more about celiac and when I get back in town I will have my PCP check that. Thank you very much! ---Bay
Posted 3/21/2011 10:56 AM (GMT 0)
Just remember, celiac is only one symptom of gluten intolerance and there are over 200 symptoms of gluten intolerance. They say celiac is the tip of the iceberg, but gluten intolerance is the iceberg!
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