I am struggling and having a really hard time right now. As many of you already know, I have RSD/CRPS throughout most of my body. Every part of me that is affected is flared up so much. I don't know what is going on. This is really bringing me down emotionally too It doesn't help that I haven't been able to sleep well lately, had a hard time falling asleep last night and then was up at 3 am...ugh!

On top of this, I am having bladder issues. Diagnosed recently with interstitial cystitis and pelvic floor dysfunction...this doesn't help things at all. None of the IC treatments so far have helped. I am scheduled to have a cystoscopy in a few weeks...he will do a hydro distention and take some biopsies. We were putting this off because of my RSD. Thank goodness this dr is very familiar with RSD. I have to do PT for the PFD, but she never heard of RSD or CRPS...I am educating her before we start

Thanks for "listening", I just needed to get this out...

Nanc

I'm so sorry you're in so much pain. Maybe the weather changes are making your rsd flare up. I hope once you get your cystoscopy and finish pt that you will feel better. I'm glad you're educating your dr on rsd. My dentist looked it up after I told her I had rsd and she even told the root canal specialist to look it up before I went to see him yesterday. I'm glad drs are finally trying to become more familiar with this horrible disease. Take care and I hope you feel better soon. I know it's hard,but try to hand in there. Maybe your rsd flare will ease up as the day goes on.

Hi Nanc,

I am so sorry you are also having a rough go right now!! Lack of sleep can sure wreak havoc with our coping skills and pain threshold.... ugh so with you. I hope you can get in a nap or two today. Currently what have you tried to help - it is hard to offer up any suggestions without knowing what you have already done.. ? One thing I do when my emotions are really down is to put on a pot of water with cinnamon, orange peels, nutmeg or any other aroma's that you enjoy and let it simmer away. I know it sounds silly but, it really does seem to help lighten my spirit when I'm really down in the dumps.

I'm am sorry you are having to undergo the cystoscopy but I hope and pray that this results in improvement for your IC and that nothing new comes up as a result of the biopsies. Do you think added anxiety/stress about this upcoming procedure is perhaps playing into your increased pain and sleep deprivation? My heart aches for you!!

Have you found a new PM yet? Maybe I asked you this before; pardon me if I did.. but, do you have access to a pool that you could maybe just go walk in?

Wishing you a better day,
Tessa

Hey Tessa, thanks for your reply. I have a really hard time napping during the day, but am gonna try. I need to take some pain meds, but was waiting until my migraine meds wore off...don't like to mix things.

I always listen to my ipod when I go to bed, hasn't been doing much for me lately. I do not have those things to simmer in a pot, but do have a wax warmer thing and some similar smelling wax I can use in it...I will try it.

I do not think I am too stressed out about the cystoscopy. I am not looking forward to it, but not worked up about it either...that will happen on the day of and/or the day before

I have not found a new PM yet. I put that on hold until I see the new Neurosurgeon in Nov. Wanted to get a recommendation from him...and I think there might be one in the same office. Bad thing is that they all have poor ratings around here.

No, I do not have access to a pool.

Thanks Renee. Not sure what is causing this. The temps aren't bad at all right now. upper 60's today and getting in the 70's the next couple of days. My dr is already familiar with RSD, it is the PT that I am educating. She has never heard of it and kept saying "I have never heard of RSD, but I have worked with patients with MS." Umm okay. She said she would look it up and I sent her a brochure that I got from RSDHope.org.

I'll bet if you an old episode of "The Gong Show" you will be able to nap just fine Oh.. I forgot last night I actually rubbed vicks under my nose (childhood memories) last night after laying there for an hour.. it worked. I thought maybe the soothing scent would help me relax and it worked! Funny because I actually put some on my husband as well because he was also fidgety which was only adding to my inability to get to sleep. I swear he is the most gentle man UNTIL.. he is in bed and then he moves about like a lion trapped in a cage.. makes me cringe

That is great you have an appt. with an NS I do hope they are able to help coordinate your care!!

What day is your cystoscopy?

iHugs,
Tessa

Yeah, I bet you are right...if the Gong Show was on, I would sleep. Glad the vicks worked for you! When my husband moves in the bed it is like yours too. Sometimes he jumps and I will lay there and count...sometimes it is every 15 seconds, sometimes 30...so aggravating!

I see the NS on Nov 22 and have the cystoscopy on Nov 25.

Thanks for the iHugs...sending some back to ya!
Nanc

Hi Nanc,

So sorry you're having such a lot of pain. CRPS is miserable enough without the involvement of so many parts of your body... I do hope you're having a better day today and getting some rest.

If only there was an answer to it all...

Bram

Thanks Bram. This CRaPS is not giving me a break today. I have gotten pretty good with dealing with the daily pain as it does change over time and I have had PLENTY of time to get "used" to it. This is just so much worse. It is not cold or damp outside. I did not do anything or overdo anything to bring it on. So, I am at a loss

I dozed off for about 5 minutes...now if I could do that again, but for an hour or so...

Looks like you have a weather system moving in according to the NOAA forcast, maybe this is causing your increased pain? I usually get in big increase in the days leading up to the weather systems so maybe this what is going on.