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Hair Loss / Alopecia Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hair loss and RSD
Nov 20, 2007
Hi All,
I have experienced excessive hair loss for the past few weeks. I mean a lot of hair in the shower and sink and floor. I am afraid of being bald very soon as i have thin hair to begin with. Is this resulted from RSD or something else? What can be done?
I appreciate some feedback!
Take care and happy thanksgiving!
Anita
Well, some good news for you! I have thin hair as well and my hair has been falling out since soon after RSD started and I'm not bald yet! LOL

It is because of RSD and sometimes certain meds have that as a side effect as well compounding the problem, and the really bad news is there's nothing you can do about it.

I am only taking a pain med and baclofen so I know it's not meds causing it for me. My hair loss began when I was not getting anything for pain or anything else. It's now been 4 1/2 years for me and the hair loss has gotten worse but I still have hair. I'm still hoping to get a lousy extra $20 one week to go get my hair cut really short like I used to have it to minimize the "mess" I deal with everyday and all the hair falling out. I have to brush my pillow because so much hair gets on it. I have to vaccum 2-3 times a week now because of all the hair that gets on the floor and I literally have handfuls of it when I wash and dry my hair. I only do that only once a week because my hair is still the only oily part on my body and my scalp starts to REALLY get painful when it gets a bit "dirty". That is another RSD thing cause it never happened to me before RSD.

So, it's not just you and it does suck. *Big Hugs*

Hugs,

Karen
Hi,


Don't have much info for you but I too am having hair loss and am afraid before long I will be bald!! It is very depressing washing my hair and seeing how much comes out or even just running my fingers throu it I will get more then I want to get back:( My PC dr is running a Thyroid pannel to rule the thyroid (spelling?) I was also told that some of the meds can cause thinning of the hair, thinning I can handle bald hmmmm I have to think about that not that I'm getting a choice here:)! Sorry I'm not more help but you aren't alone!!!

Hugs

Shannon
I started by loosing the hair on my arm (first site) As the RSd progressed so did the hair loss. I did not have a single hair from the neck down. Then the hair on my head started showing up all over my cloths & pillow! I'm thankfull I had a really thick head of hair! So, for the past ten years I've been waiting to wake up bald. Not yet. Amazing. No reasqson found.....yet.

Judie
I'm sorry to hear about everyone's hair loss but I know what all of you are going through. Before I was diagnoised with RSD, I suffer from severe hair loss, in fact it seem like one side had quit growing. I had little red bumps all over my scalp and it would itch and feel so tight, I couldn't even think straight. I use to have real long, thick red hair and then it was gone. I even had to cut it real short and there was a bald spot on the top of my scalp and there seem to be this flaky kind of white crust on my scalp. But luckily enough for me since I was diagnoised and started medication for it my hair has started growing again and my scalp is now better. In fact, my daughter was just saying the other day that hair is starting to get thicker and longer. I just so grateful to have hair again because all my life my hair has been long and thick.
wow,i kind of suspeacted that my RSD may have been responsible for my huge amount of ongoing hairloss,but now,well,it does appear there IS a bigger connection than i thought based on what you guys have posted here.tho i know it sucks,it does make me feel a bit better to know i am not alone in this.i do know that just having RSD can change the nails and hair growth,but i am wondering if this is just from the actual RSD or the sympathetic nervous system damage that actually triggers the RSD??the hairloss i have been experiencing which actually has been kind of going on since my SNS and spinal cord damage that took place back in 03,has gotten just unreal at this point.i have lost at LEAST half of my hair volume at this point.probably over half by now.i used to have very very thick heavy hair all my life til this happened.it had been so thick i used to have to go in to just have it thinned so it would lie right on the sides of my head.but no more.

since i started a new therepy called craniosacral and also myofascial release about a month and a half ago,i have actually noticed hair growing back underneath now when i pull it up and look?this cranio actually tries to "right' the messed up central nervous system by getting the actual nerve flow at the CNS level to just shift into all the right places that have been changed mostly due to alot of traumas i have suffered thru my life,and the spinal cord surgery from what i was told by my therepist was a huge trama to my CNS,just in and of itself.this really is a great therepy that was recommended by my PMs NP who i always see for my follow up appts?it has helped alot with certain areas of my pain processes.i have about five really awful pain areas not just the RSD.this appears to really help my more structural type of pain than anything else so far,it also has released alot of ongoing trigger point problems i have had for decades in my upper back and neck form c spine deterioration and other crappy stuff in there.just another possible therepy that you may want to try or consider.it really has helped me with my pain issues and i do think it IS responsible for at least some of my hair starting to grow back too.

this therepy is also amazingly covered by my ins.they wouldn';t even pay for the myofascial release way back in 03 when i very desperately needed it just to get rid of the huge huge muscle wads that had developed up in my upper back just from the muscles being cut in order to reach my cord.but for some reason,they do now thankfully.just thought i would throw this out there for anyone who is having these types of issues.that cranio and myo has really helped me alot.hopefully my missing hair will eventually come back to me.marcia
Thank you all for your reply! I am so glad i am not alone. For those who is suffering hair loss, did you ask your doc what was the cause for your hair loss? Is it really caused by RSD? I had hair loss on two occasions prior to RSD; these were after i gave birth. However, those hair loss were temporary and much less severe. This time around, i really notice a lot of hair falling out when i shower and blow dry my hair. I am so afraid of washing my hair now. I am sure it is not related from the medication because i have not taken any new drug prior to this occurance. For those who has thick hair, i am jealous of you because you can afford the hair loss to some degree.
Marica, Can you explain what is the craniosacral therapy? What does the therapist do and how does it help with hair growth?
Take care!
Anita
I think i kind of explained it about as well as i can up above but the more in depth details of what this actually does or how it happens,the therepist really is just a 'facilitator?he just lays his hand on like the lower abdominal diaphram(yes,we do have a diaphram in the lower abdomen,didn't know this either)and my body,after about a couple minutes,honestly it just starts moving on its own.it is the freakiest therepy i have ever tried.he said its my own CNS trying to unwind itself from the CNS being so messed up(my words not his)my hip area actually starts to raise up?and then it actually tightens and keeps going up and up til it reaches this kind of plateau?then goes back down.it just releases then slowly goes back down by itself.i explained this stuff to my mom and honestly i think she thought i was nuts til she came along and sat in on a session with me.i looked over at her during one of the "raising sessions" and her jaw was kinda hangin open there,lol.it was funny seeing the look on her face.it really is a trip.
this is actually a combo of myeofascial relaease along with the craniosacral therepy.he also rights the CSF flow thru the dura?this is all done at the CNS level,with the actual nerve flow.but the myo release is really helping with the godawful trigger points i keep creating in my upper back.they are almost completley gone and these were something i have ALWAYS been dealing with for well over ten years just becasue my c spine is such a mess.

it is a therepy that honestly is really truely helping my pain and the awful spasticity i have had since my spinal cord became injured.my hyperreflexia is so much better along with the startle reflex that was just nasty.
the myofascial relaese just helps relaeas the actual fascia?this is like one continuous sheetlike a spiderweb type thing that actually covers our entire body organ structures from the brain on theu the toes.it covers all of our muscles along with organs.so releaseing one area where you have muslce problems or other pain processes going on can affect the areas way to the opposite parts of our bodies.this really helps tons.i wanted this myo therepy way back in 03 when my injury frst happened and my therepist at the rehab facility i was at really very highly recommended it for me.my suscles in my upper back had all been cut thru in order to reach my spinal cord.it was one huge tight inflammed mess up there.she told me if i could get that deep myo release it would really help to work out the bigger muscle wads(huge trigger points)from deeper within my muscles.it was no go by my ins co back then.very dissappointing.but now,they DO cover not only the myo release but also the cranio too.

i think the only reason this cranio has helped with my hair growth is my CNS,and alot of other body system functions had been sooo screwed up before.i have not been able to maintain a normal wieght anymore either.i am constantly hovering around about91-96 lbs.not a good healthy wieght for me.i am now up to 96lbs and beleieve me,that is a biggie for me right now.i just think becasue my SNS(which is what is the trigger for even getting RSD)has been so messed up,along with other areas of my CNS,it was really messing with just plain old body system functions.now that they are 'righting' themselves.my body systems just 'feel" a bit more normal now to me.i just happened to notice that new hair growth when i was plucking a few of those gray hairs underneath my hair one day?i just saw alot of brand new hair growth under there.the only thing that has been different for me in the last month and a half is starting the cranio and myo release.so i am only guessing here but i do strongly feel that there is a definite connection there.and it would make alot of sense too ya know?growing new hair IS a body system function.i do feel it is dierectly connected in some way to the actual SNS damage that started my RSD process.
this is of course just all my theory.but i do really feel the therepys have helped me in alot of ways.my therepist has about 18 years of experience in doing cranio and the myo.the man just has tolay his hands in that certain spot and i just start feeling things.its wierd.quite the adventure for me everytime i go see him.having those TPs just like gone right now is in and of itself a really incredibly huge thing for me.they have casued me nothing but hell since they started.that radiating pain is just gone now.
this is just something i would recommend to anyone who has pain,period.espescially with SNS damage or heavy muscle trigger point problems.its really helped alot.sorry to ramble on there.good stuff tho.hope this helped some and didn't confuse you more.Marcia
I've also seen an increase in the "shedding" I go through....my fiance jokes that he doesn't know if me or the dog sheds more! It's gotten worse when my RSD is flared up too I've noticed. I have been using the new Pantene shampoo for damaged/stressed hair that promises significant less loss after a month of use- and I really have noticed a big difference in how much is in my hairbrush, on my clothes, etc. It's nice to know that I'm not the only one to have this problem...with RSD it's always so reassuring to know that others are experiencing the same or similar thing. Especially after hearing from doctors for so long that I must be focusing on the pain too much, that structurally my foot wasn't too bad (although now there is a bone deformity going -but obviously they can't operate...grrr!) - so it's just calming in a way.

Ok, I've rambled on enough for now! :-)





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