This winter has been the worst for me so far in this regard, but I guess I'm not terribly surprised at that as this year overall I've seen a worsening of symptoms on several fronts. I've started in with nosebleeds like wild, which I think is secondary in part to the dryness issue as well, but I can't say for sure. The only think I try for the nasal tissues is the saline spray.
My lips are terrible and I've found it nigh impossible to keep up with them; Carmex ( http://www.mycarmex.com/our-products/original-carmex-jar/default.aspx ) is my old standby but there are a few other products that I use on occasion. I like the way Nivea lip products ( http://www.niveausa.com/products/lip-care/A-Kiss-of-Smoothness-Hydrating-LipCare-SPF-4) go on, but they have that tendency to make your lips "addicted," where it seems like they dry out even faster than before you and you have to keep reapplying every 2 seconds. For something with a tiny bit of color, I like these lip tints ( http://www.amazon.com/C-Bigelow-Mentha-Tint/dp/B003T7HNAG/ref=sr_1_5?ie=UTF8&qid=1293158038&sr=8-5 ).
My skin actually cracks and bleeds on my hands, but that's a combination of the dryness and my eczema which gets really icky in the winter. I'm trying to keep it under wraps with lotion and using the steroid cream eczema medication sparingly (Beta-Val) ... my scalp also has dermatitis issues that I treat with the lotion form of the betamethasone.
My eyes have been dry, burning and itching really badly, but since I just started wearing eyeglasses all the time (instead of just for reading) this year, I thought maybe that had something to do with it. Now that I'm hearing from you folks that you're having similar symptoms with the dry eyes, I'm second-guessing that.
I don't have as much of a problem with dry mouth because ... nevermind, the reason is gross. Let's just say it has to do with my nausea issues and leave it at that. I guess there's a silver lining to *anything* if you look hard enough.
There's one thing that hasn't been mentioned yet and I'm going to stick my neck out and mention it because it doesn't get discussed much on the forum and it is an issue that can go along with dysautonomia. WARNING: ANY MEN READING WHO DO NOT WANT TO READ ABOUT SENSITIVE "WOMEN'S ISSUES" SHOULD STOP READING HERE. YOU'VE BEEN WARNED.
giving the men time to skedaddle
doo doo doo
nothing to see here
(keep scrolling ladies)
I have had major changes with regard to vaginal dryness. I know it's not "the change" because it started before I turned 30. At least, I really, really, hope I didn't start menopause in my 20s. :-p So yeah, dysautonomia doesn't just possibly cause impotence in men, it can also cause women to have changes in our sexual responsiveness AND changes in the way things are even when we're not having intercourse. Joy! I tried Premarin cream for a while, but I really wasn't thrilled with it, so I'm not using that at the moment. I really haven't found a good way to deal with the dryness, but I have learned the hard way that it has made me prone to yeast infections that don't have any symptoms other than pain (the fun never ends, right?) which sometimes even my GYN isn't sure are there until she tests for them. I don't know if anyone else has those problems, but just a heads-up that that can also be related. (While I'm on the subject of things which are a little awkward to discuss, urinary and bowel incontinence can also be symptoms of dysautonomia. If anyone wants to discuss those, jump into this thread or send me a PM.)
Right so, now that I've discussed my privates with everyone ... I'll just be moseying along. Mosey. Mosey, mosey. :-/
Marie, yes I.have that problem and have for yrs. We had an humidifier put on our furnace to help keep air moist as furnace runs. I use massive amts of eye drops. Restasis didn't help but I know many it has. I also suck on ice all day. My dh says I am an ice addict.lol. When I don't have the ice I drink my fluids plus I also use hard candies to suck on. I can't use sugar free so am sure its not good for teeth but if I don't my mouths so dry it won't open. I tried chewing gum but didn't feel it helped that much. My skins very dry so I use lots of lotion and found aquaphor works well on my dry lips.
Hope this helps. I am thinking its from dysautonomia or an autoimmune thing that causes this.
I think many of us have to avoid sugar free for various reasons and the candy or drops idea is a great one. I was told gel eye drops work best and I use them in addition to the restasis at the doctor's advice as it does take 3 moths for them to work. The steroid drops I am tapering off now but they gave instant relief. My lips get incredibly dry and I have found some type of stick stuff that works pretty well but I am not sure of the brand. I will check out your aquaphor for sure. Thanks for all the ideas! Marie
You had me laughing with your very last comment! Humor is what gets us through these awkward and or trying moments and I love the way you sprinkle humor through your always informative posts.
I sometimes use a blistex fruit flavored lip product that looks a lot like chapstick and seems to last a long time. I will for sure look for the ones you mentioned. I tend to like nivea skin products and find some of their thick creams excellent for feet and face alike.
I realize some might hesitate to discuss certain topics but they are a reality for many of us. Some with disautonomia may have difficulty emptying their bladders and others may find they empty all too easy! I know one person who has had an implant to aide in emptying. I know many who have incontinence and need to plan for that. While it may be something hard to talk about it is something that has to be dealt with if it is a problem and it is just another part of this syndrome.
It goes without saying that many who have SICCA symptoms of dry mouth/ dry nose/ dry skin in general will also have vaginal dryness as well. I know that I once used a premerain cream but when they published the research on effects from hormonal products I stopped using it. If I find anything written about products I will certainly list them here. I haven't really researched this part of the problem.
I would say my biggest problem is with my eyes, I am hoping the restsis does kick in in three months. IN the mean time I have the tapering dose of steroids that hopefully will calm things down and the over the counter gel drops I am using help too.
Definitely know me know how things go with your eyes. Mine are constantly getting irritated. At this point I think they still produce enough tears that I'm not needing something like Restasis (sp??), but not enough to do a darned thing when the slightest irritant gets in them, so I have a lot of problems with itching and burning and scratchiness from like the slightest fleck of dust or if I accidentally rub my eye with non-freshly-washed hands. (I know, I should know better ... but bad habits die hard.) I do worry that it will worsen over time though, so I might as well keep my eyes peeled for what works for others in case I have to go down that road myself.
Quite frankly, I would've preferred to deal with eye issues at my age than bladder issues, but I guess you really can't pick and choose your symptoms. Also, I doubt bladder issues are really something anyone wants to deal with at ANY age. But for some reason I just found it particularly distasteful to be at the medical supply store discussing my Rx for "those" supplies at my "tender" age. :-D I've got to laugh; I'd cry if I didn't keep laughing. At least I have you guys/gals to laugh with me!
Wow! It's after midnight ... I've been up tracking something for my doc (having major appetite issues I need to put a finger on) and wasn't paying attention to the time ...
Happy Christmas Eve for everyone who celebrates it!! And for those who don't well ... happy free day off of work!! (Hanukkah was early this year, so methinks that's already passed ... but a belated Happy Hanukkah to all the folks who celebrated that!! And Happy Kwanzaa Eve Eve, too!! Hope I'm not forgetting anything ... Happy Christmahannukwanzakkuh!!!! And Festivus ... for all those who miss Seinfeld!!!)
I have a family member more your age who has similar problems so I do understand how in congruent some of these things are for your age group. I am twice your age and think therefore some of the incontinence things are more easily accepted as something that can happen with age as well as this syndrome.
As for eyes, I do notice a settling down of some symptoms with the tapering steroid drops. I wish in fact I weren't tapering them as the four times a day seemed optimal. I have had to increase the over-the -counter drops as I taper off the steroid ones but I was told to do that anyway. Sticking with the restasis until the three months are completed to see if it will work is truly an exercise in faith! They do sting a bit as well. I am just into my 2nd week of 12 so I have a long way to go.
Does anyone else feel a bit dis-jointed in having to go to so many different doctors to take care of all of our symptoms? I often do. I mean there is the eye doctor and the foot doctor and the neural and the primary and someone for the swallowing issues and then the speech therapy, the nephrlogist and on and on it goes. This month it is off to see the endo and later this month the neurologist in Arizona. Not only does it feel disjointed but the co-payments in addition to the cost of having insurance often looms large. In January I have six appts scheduled so far at $210 copay total not to mention commute time and distance plus the $600/month insurance premiums and then the copays for meds which are huge. The speech therapy copays were over $300/month. We won't even talk about the Mayo visit coming up.
It is the nature of our health care system that we have to go all over for care it seems. When we lived in a larger metropolitan area I had one clinic that housed many experts and that was easier. I could more often see more people in one place. They also had a system where everyone was informed of every visit. Now I have to make sure each one knows what the other is doing. There is some communication between each one and the primary and nephrologist but I have to give others an overview that includes something from each one. I am not sure I am articulating this well but I feel an overview is sometimes a huge responsibility that falls directly on me. I also feel like I am forever shuffling paperwork.
Maybe this all settles down a bit more once one isn't newly diagnosed.
Maybe not. It just seems like so much is going on the first year. I am grateful to find people who are helpful and I am grateful for the coming up Mayo visit but sometimes it all looms large. Getting answers is a lot of work and expense! Marie
For a while I felt like I had things pretty coordinated with my "team"and that communication was flowing smoothly, but I'm feeling fragmented again now. I guess it's in constant flux, like so much else with these conditions. Starting out is probably the toughest overall, though. Hopefully you'll eventually get into a groove that's easier.
I just got 4 new referrals for specialists that I haven't had thus far, plus starting in with the dental stuff, and I might be switching one other doc soon, so that's what's making things chaotic now for me I think.
I can understand your feeling a bit off balance with four new referrals and the possibility of dropping one person from your team. All is in flux! I have two new, one semi-new, and four others all within a few weeks and I feel the strain. I can see though that once all gets established and I get a rhythm it should be easier. But you point out the fact there still will be changes. I too will probably not need one person much longer. Not all are up to the journey or needed the whole distance. I can't emphasize too much that some are found to be not helpful and others helpful beyond belief. It takes a while too to figure things out and since we are not static things will keep changing. I have moved my dental cleanings up to every four months now that I have the SICCA symptoms. Will talk more to the hygienist about my intolerance of the xyloltol that is in so many of the moisturizing mouth products.
I also want to get a medic alert bracelet. I have put that off all this time because I felt like my dx needed to be more complete. Maybe after the Mayo visit I will feel like I can finally put something concrete down on paper. Lots of loose ends!
Good luck with your dental things and the new referrals. I hope they all lead to more help and clarity! Here's to some semblance of normal for us all and soon!! Marie
If it's any reassurance on the medic alert bracelet front, I know at least the company I go through will reengrave for free for 1 year from the date of purchase as long as you return your warranty card with your doc's signature on it when you get your bracelet in the mail. (It's no hassle really, your doc just has to confirm that the initial info is correct. After that, you just contact them whenever anything changes and they'll do the changes for you for free for up to 1 year later.)
That warranty has been a LIFESAVER (or wallet-saver, I guess you would say?) for me, because my diagnoses, allergies, and meds DO change so much!!! I've used it several times, and never had any issue. The only cost to me has been a few bucks for shipping.
If you haven't caught that link before when I've posted it, let me know and I'll get it for you. It's about 4 AM here now, another painful sleepless night for me, and I ought to be at least trying to get some shuteye because I have a really important appointment tomorrow to pick someone's brain.
I will toast to that by the way, definitely! That should be our forum toast for New Years!! TO SOME SEMBLANCE OF NORMAL FOR US ALL AND **SOON**!!!!!
Thanks for starting this thread. I am struggling with dryness as well: skin, eyes, nasal passages. I have found the fairly new Simply Saline spray pump helpful as well as saline gel. My nasal passages dry out so much that sometimes it makes it hard to sleep.
WARNING: PERSONAL WOMEN'S ISSUES FROM HERE ON......
Ahem, I too suffer from the beast of vaginal dryness, which is extremely frustrating. I am going through menopause so that is not helping, certainly. My gynecologist suggested an OTC product called Replens. I have not tried it yet but just bought some. It is a vaginal moisturizer, so to speak. Supposedly one dose moisterizes for three days. The dr. also recommended Astroglide during intercourse. Has anyone tried these with success?
I know this is a very personal topic, but it is so helpful to have a place to talk about this. I am grateful to all who have shared so far...
Heiferly, very good to know about the bracelet. For sure change is the
name of the game with so much of this.
laurab8218. Thanks for sharing your doctors suggestions. I think it is just this type of information that others are waiting to hear about. At least now we are aware there are products that might help that are over-the-counter.So much of this is trial-and-error. As others try things hopefully they will check back in here and post.
As far as skin care products in general I have found good luck with the Nivea creme that comes in the big round blue jar. It has no scent either and is a thick creme I can put on my face and feet and let it soak in. I have used it for years. Marie
WARNING: ANOTHER PERSONAL POST RE: WOMEN'S HEALTH ISSUES HERE.
I haven't tried the Replens, but I have used Astroglide. For a *long* time I had really good luck with Astroglide and it was the only product that I really had much success with in that department. I highly recommend it. Unfortunately, I eventually developed a sensitivity to it myself and can no longer use it. For some reason I've become very reactive to very many topical things ... I think it happened around the same time that my adhesive allergy went haywire from the persistent exposure to EKG tabs in cardiac rehabilitation. I went through a long span of time where we tried everything under the sun, and just couldn't find something that my body wouldn't react to.
Apparently, all the pain from either trying with stuff that was causing nasty reactions or trying to go without anything at all despite the dryness (because I couldn't find anything that I could tolerate) caused my body to develop a condition called "secondary vaginismus," which is very painful in its own right. To be honest, I'd never even heard of it before I went to my GYN to discuss my pain during intercourse and she diagnosed me. Lesson learned: if you're having pain during intercourse, talk to your doctor!
I found out from my doctor that I can use plain old olive oil (yes, from the grocery store, LOL) as a lubricant for intercourse and that is safe for my body not to react to. (I eat it, so I guess that makes sense, haha.) My doctor also said it's a very good moisturizer so it's healthy to use. We're also treating for yeast infections for a 3 month period because I've had a few without any apparent symptoms (other than increased pain during intercourse, which I hadn't realized could be a symptom of that), and she said it can't hurt to just go ahead and treat for them back to back and it might help. I suspect that I've had some recurrent ones that have gone untreated, so I'm really happy about this decision. If the root causes of the pain are resolved, the secondary vaginismus should resolve as well we're hoping.