Hair.......
 

Hi

Just a quick question - is it normal for your hair to fall out with RSD?

i have been losing clumps from my scalp for years and never really worried about it - I have red hair which is very thick, so losing bits is no major issue (apart from when it looks like I'm moulting!!)... BUT I appear to have lost it from my arms and legs;...........completely!!!!!! is this normal? I can't find reference to it anywhere - I know there's a change in hair etc but I'm not sure why my limbs would wait 5 years and then all the hair would drop off??

any thoughts appreciated!!

Rxxxxxxxxxxxxxx

Hairless
 

Hair gone...
 

I also had hairy arms and legs prior to RSD. The first thing I noticed was that the hair on my legs was thinning out. After about a year, as spread began, the hair on my arms started to do the same.

At this point my legs are almost totally hairless and they have that shiny look. My forearms still have some hair but not close to what it was before.

it isn't ALWAYS rsd
 

And to add to that - it could also be a result of high stress levels caused by RSD.

I find that I lose more hair when my pain is especially bad and/or other parts of my life cause stress - exams, etc.

Ack :eek: I am new to this rsd stuff but just looked at my arms and legs and where did the hair go?

:( I am freaked out now

thanks everyone!!!!

Allen --> I had lost hair before, but at this rate I am going to a totally bald person!!! lol...... yeh, my skin is shiny and scaly (Especially around my fingers) my feet are tight as well. I get lots of skin breakdown because my skin is quite thin and it takes FOREVER to heal!!!!!

Thanks Kejbrew - I don't know if we have met before? but thanks! I hadn't really noticed it, cos I guess I don't look at my limbs that much! it just seems so bizzare to me! (actually thinking about it, i suppose it's oxygen starvation or something!)...

Liz - you make a great addition to the group - and if anyone says you aren't I will personally bite them for you!!! (ok - well... I'll dribble on them... can't eat but never mind). You always add thoughtful things and come up with new angles on ideas that others haven't - don't knock yourself down!!! I might make the effort to go and see the GP - I just don't tend to because he doesn't understand RSD and generally either thinks i am being an idiot or is scared I'll ask him something medical and he won't be able to answer me or help... may store it for the consultant who I'm seeing in a fortnight.

BB - could be stress!! have so much work to hand in, got a phone call today from mum saying she is camping in the Sahara so if I don't hear from her don't worry (I didn't even know she was going to the Sahara and I was home a couple of days ago!)....and pain does make everything worse and so much harder - wouldn't be suprised if I'm grey!!!!!

Thanks guys!!

Love ya

Rxxxxxxxxxxxxxxxxxxxxx

Topamax
 

Remember this drug?

The one they made toothpaste, and other products from on the old forum :D

Well Topamax can cause hair loss fer sure, one of the reasons I stopped taking it. Besides not able to relieve the bladder efficiently.

My skin is all thin and dry also. The doc told me classic RSD.

OMG! Allen, really? I shed like CRAZY! We joke that we have to vacuum the bathroom tile before we can mop it cuz of my shedding hair. From my head. My legs, though. I WISH they were hairless cuz I hate shaving. My SO says they're hairier than his right now. LOL! Hey, what can I say? My hands are in HUGE cramp mode right now cuz of this STUPID cold.

And about the bladder issues - can you tell me what you mean by "not being able to relieve the bladder efficiently?" I will sit there and KNOW I have to go....but it just won't come. Is this what you mean? And people wonder why I am in the bathroom all the time. It's cuz I know I have to relieve myself, but it just doesn't happen.

Hi,
 

I just posted about another issue with hair. I hadn't seen this post.

I saw on a show last week that we lose about 100 hairs a day. So this might tell you what's going on. I also lose a lot of hair everyday when I do my hair.

My hair is very thick. I just went last night and got it trimmed and thinned and the girls were talking about how thick my hair is. When Bill and I got married they couldn't get it to stay up on my head in a bun so I had to leave it down. It's still that thick.

I think some meds can cause it also. Bill had been on some meds that caused him to lose more then normal.

Ada

Lisa- Tshadow {TOS forum} had very serious bladder issues due to meds. Went to ER a couple of times and now she must drink much water and go every 2 hrs {last I heard anyway} to avoid infections.

Lisa,

I had a similar bladder problem last year; this probably doesn't apply to you, but here's what happened with me. I had the exact same thing, you go, sit there and just have to wait till it decides to happen...I could be waiting minutes, sometime. Problem was, I didn't even know how to describe it - everything I looked at was about not being able to go at all, or going too much...and I couldn't think of a way to describe the "sit there till it decides to come out" thingy.

Well, turns out that it's a symptom of spinal stenosis (probably other things too) which I have. The doc said "Oh, urinary hesitancy!" Aha, I thought, that's what you call it! He didn't prescribe anything, said to wait a while, it'll probably resolve itself, come back if it doesn't. It did, but overall it lasted maybe 4 - 5 months, no problem since. No pain with it, or discomfort - just annoying and inconvenient.

BTW, looked it up on the net after I got home and yes, it's listed as a symptom of SS - one of those medical issues where you can't find the answer till you know the right question to ask! Or..you can't get the answer till you know the answer :D

Anyway, maybe this helps, at least you know what it's called now :)
all the best.

After the pain meds
 

Hi Lisa!

Well the Topamax can cause bladder stones, very painfull, and they lead to blocking the flow of things. Plus Pat is right about SS too. Then there is the one that gave me problems that I didnt realize until I came off pain meds.

Opiates caused me to have that delayed response thing, like sometimes it would take seemingly forever. As Pat said, minutes even.

That is the life with RSD :)

Dang! You guys and girls are so smart! I just looked up urinary hesitancy, and lthat is the PERFECT definition. No, doesn't hurt, doesn't ANYTHING, but yeah..it's bothersome. My SO will say, "What the heck are you DOING in there?" LOL! He doesn't believe me when I tell him I'm going #1 - he thinks I'm in there to do #2 15 times a day. LOL!

I never knew this. Thank you ALL!

YIPPEE! I'M NOT WEIRD! I'M NOT WEIRD! I'M NOT WEIRD! I'M NOT WEIRD!
:Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli: :Dancing-Chilli:

I had the same problem. My bladder would be so full it was painful but I still could not urinate. This happened to me two times in my life. Both times I had been prescribed Elavil and after taking just one pill. Perhaps it could be your meds. Regards, Lil

Hi Rosie,

Is your scalp tight? Hugs, Roz

I noticed a peculiar absence of hair in my lower, right leg- the original site of trauma. The opposite shin area has also lost some hair. Hmm.

I have always lost a lot of hair from my head. Think it might be my stress level. 5 kids 10 and under, RSD, etc. could be a tad stressful-lol. However, since my RSD has progressed, the hair on my lower leg, near my original RSD site has completely stopped growing. Now, I wouldn't complain about not having to shave, but I understand that the other effects don't really make it worth it. My doctor said to expect changes in the hair growth, and that was one of the first things he asked about when making my diagnosis. Hope you get it all figured out. Whether it's meds or the illness, you should probably talk to your doctor just to put your mind at ease. Good luck!

AM

Hair........
 

Allen: I have a few ?'s about Topamax? I have been on this med for a very long time. Now that I have been reading this post about hair loss and skin shedding things are starting to fianally come together. I have all the above sx,also the problems with the bladder. Now that it is summer and when I go out into the sun-(even with sunblock on) my skin peels and sheed's like I am some kind of reptile or like a snake does! It is starting to really freak me out! Do you know is there any other med than Topamax that I can take so I do not have these problems? Also I am wondering about what happen's when you stop taking Topamax,do you have to drop down slowly? I am sure that you do. I have been on 200mg two times a day for over 7 years now. If anyone can give me any input I would really be one happy woman :) :trampoline:

Are you on topamax for the rsd pain or migraines? I am sorry I don't remember so if you have said that in the past. Have you tried med like neurontin? I have rsd in my legs but my eye/ear pain was getting so extreme and was causing migraines and crying pain. Due to that I can't loose weight my doc said no to the topamax and started the neurontin.
Now onto the shedding and hair. About 1.5 years ago right before my severe dry eye/bleph I developed a scalp that was so itchy/unreal dandruff and my skin was shedding in clumps I mean everywhere. For the skin/hair issue I went to a derm who rx steriod shampoo which helped so much with my hair and the skin I use just otc cream but seemed after a long time 6 months to be doing a lot better though I am still dry and have flakes but not chunks of skin. Now recently and I had thought it was due to Cymbalta as I read that my hair was coming out in clumps but that seems to have settled as well and I have not changed meds.
I know I am not much help just some thoughts

losing all of my hair!!!
 

i I have used Topamax for 3 years since my brain surgery in 2008. I lost weight and was very happy until this year when my hair just kept shedding. I also notice that the generic brand causes me to have a problem urinating. I rant the bathroom constantly with the brand name but the generic I have problems urinating.
I want to stop taking the medicine altogether. I hAve not had a seizure in a year. I take 150mg 2 times Day .