Question
 

Hi Guys, my name is Michelle and been suffering CRPS for 13yrs, initial site in left limb but has spread to other parts. I don't know how many of you know about Ketamine Infusions. I have a question for you guys, has anyone noticed a change in their head hair, mine seems to have gone from really curly to partial straight? I not sure if it has anything to do with the CRPS but trying to find links. As I have seen some about eye problems, I too have noticed a huge change in my eyes over last few months but notice it more so when my CRPS in in a flare up, I noticed blurring, the need to have to blink a lot to get my vision clear, tiredness and the feeling they are watering but they not, and sore behind the eyes, this is even wearing my glasses. The other thing happening is soreness and numbness of the hands, they get sore, hard to type, hold things, nail brittle, and ache. Well it's one of those days that we all experience is a bad day, and yes like you all well and truly over it. Well hope to hear from anyone, nice to have found a site I can chat with others. Cheers Michelle

Hi Michelle
 

I have definitely had difficulty with my eyes, hands and even my ears.

It took a few years, but then my eyes started to fail in a big way. I need glasses all the time now to make things larger. Granted, some of that is that I am getting a little older, but a good deal more of it is from the CRPS. My eyes will become VERY blurry during a flare. No glasses or increasing my screen view size on my PC to a million percent will help during a flare, and my eyes will water like I'm crying. I don't notice any pain directly in my eyes though.

My hands... not as bad as the rest of me from the waist down, but have become more involved by the day it seems. I drop things ALL THE TIME (that just ticks me off, inevitably it's a big full glass of tea, and then I'm wearing it!). :eek: Or I will drop a fork while I'm trying to eat. I've told my husband... oh boy, this is going to get fun! PT gave me something to use with my fork to make the handle bigger. That was depressing, so I just drop my fork when it happens lol. Somehow this seems better to me. :rolleyes: I have pain in my hands and forearms that had gotten pretty intense at times. From time to time they will swell. My hands and wrists are pretty weak. I used to be as strong as an ox. Now... not so much. Things get real interesting when I start tremoring like I have Parkinson. Thank goodness that's not all the time yet.

My ears will ring like CRAZY and I am SUPER sensitive to sound. Like a clank of a spoon on a cup, or the opening of a pop can.. OMG... I have to brace myself. Any sudden noise that startles me and I am like a Donkey on the edge.. (BRAM- IF YOU'RE READING THIS, I COULDN'T HELP MYSELF, THAT PHRASE CRACKS ME UP!)

ohhhh... yep all these things are just tons of fun, aren't they? So sorry to hear that you're struggle with some of the same symptoms hon. Hang in there, perhaps you will find something that helps. The only thing I know of is rest and sometimes meds help.

I had really bad issues with my eyes (blurry vision, double vision), ringing in my ears, nose bleeds, and dizziness when my RSD started to spread a couple years ago (along with a TON of other new symptoms). It was pretty scary when all these new things started to happen along with the spread of the pain (started in my left ankle and now have it in my entire upper body from my waist to my neck including both arms and hands).

The thing that helped most with the dizziness, blurry vision, double vision, nose bleeds, and ringing in my ears was Clonidine Patches. My understanding is that RSD causes these things because it affects your sympathetic nervous system...which controls your blood pressure. When your blood pressure goes wonky, spiking and dropping out of no where, it causes these problems. The clonidine patches regulate the blood pressure and prevent these symptoms from occurring. I still get them occasionally with really bad flares...but I WAS having them several times a day every day. So a couple times a month is really not that bad. I still have sensitivity to certain sounds that can cause my pain levels to rise...but the ringing in my ears is pretty much gone.

It might be worth a try and is something you might want to discuss with your doctor. I read about clonidine patches on the RSD Puzzles website and printed off that information and brought it in to my doctor.

Hi Michelle, hope you are having things a little easier today...:rolleyes:

Yep I can relate to much of that. I have lost a lot of my hair recently - not in big clumps or anything, but just loads coming out when I wash or brush my hair. It's horrible, it's gone so thin and grey-streaked compared to the thick dark hair I had just a couple of years ago. My eyes are very dry, and I get headaches too - I never used to.

I have to quote Vrae here...

"My hands... not as bad as the rest of me from the waist down, but have become more involved by the day it seems. I drop things ALL THE TIME (that just ticks me off, inevitably it's a big full glass of tea, and then I'm wearing it!). Or I will drop a fork while I'm trying to eat. I've told my husband... oh boy, this is going to get fun! PT gave me something to use with my fork to make the handle bigger. That was depressing, so I just drop my fork when it happens lol. Somehow this seems better to me. I have pain in my hands and forearms that had gotten pretty intense at times. From time to time they will swell. My hands and wrists are pretty weak. I used to be as strong as an ox. Now... not so much. Things get real interesting when I start tremoring like I have Parkinson. Thank goodness that's not all the time yet."

...this is just like me at the moment, and I'm finding it very hard to deal with having this whole new limb involved. I thought the leg and both feet were bad enough!!! Give me a break!!!

Vrae babe, I am indeed in full-on Donkey On The Edge mode :D - look at my eye twitchin'... I've been a bit crazy today, I've talked to myself, laughed out loud, cried, tried to reason with myself....it's not pretty. This thing gets you down so low sometimes. I've got to go off to work for a couple of hours in a bit, and impart wisdom to a young mind. On one hand, I am soooo not in the mood, on the other (good :rolleyes:) hand it will distract me and make me feel better about myself. If I don't fight this I'll go mad.

Finger pads are burning up. My posts are going to get a lot shorter!

Take care all - it's so good that you all understand. No one else in the real world seems to :rolleyes:

Bram.