[Vrae]

Oh man these flares of mine are getting out of hand! The RSD has really taken hold in my torso. Like every single muscle. Last night was horrible! It was like the muscles in my torso were squeezing me, REALLY, REALLY tight. Of course all the typical other pains as well, just elevated beyond belief. In these moments I feel like my body is nothing more than a torture chamber! I was back to taking everything in my arsenal last night, just to try and stay ahead of the pain and out of the ER. I guess it was a success because I was able to stay out of the ER, yay.

So the legs, feet, arms, hands are bad enough, but now with the massive involvement of my torso… wow. It was tough not to cry. I hate when I am forced to take Percocet. The stuff just wires me for sound and then I’m up all night, and ended up sleeping most of the day today. Funny (haha.. right?!) how nighttime is always worse. I can feel the RSD coming alive again today as the sun begins to set here. <sigh> I sure hope it’s not a repeat of last night.

My spams are off the charts too. Toes trying to curl, leg muscles contracting. This always worries me because I fear they will get stuck in a contracture. I was back to having to use a walker last night. Every muscle in my body was very weak.

I’m sure that the 45° swings in weather, a front on the way, and it’s time to cycle for the month have absolutely nothing to do with it.

My cycle plays hell on my RSD every single month. It’s horrible. I am thinking about finding out if they just cut the tubes and maybe I could be done with that part and get relief. My doc wanted to do a hysterectomy and some sort of mesh to hold up my bladder a few years ago, but I am just not sure I could handle the recovery and scared to death that the RSD will retaliate.

Sorry to just complain but last night was really bad and to say I’m concerned about tonight would be an understatement.

[RSD ME]

Hi Vrae, I'm so sorry you had such a bad night. I hope tonight is better for you. I get spasms usually in my left calf sometimes, but not the torso. I do get terrible pains in my stomach and feet and hands now though. I take extra percocet on those really bad days like pm dr instructed me to do, but I try not to unless its really bad. a heating pad seems to help too. (just don't fall asleep with it on.) (I've done that sometimes. Not a good thing to do.)
I had a oopherectomy (ovary removal) last year and got an infection from the mesh they put in plus part of one of my ovaries was not completely removed. I was supposed to have both removed along with endometriosis.
So I had to get a complete hysterectomy (plus the partial ovary that was left behind), the endo that was left behind and had the abcess from the infection from the mesh removed, plus two cysts. I had a robotical surgery in ny from a specialist for endometriosis and feel less pain now, but it's still not completely gone. I was just in last tues. and was told endo has not returned and now there not sure why I still have pain. It might be the meds I'm taking, so I'm trying to cut back on advil and it's seems to be helping, but my pm dr told me that it could take a year to recover.
I don't regret the hysterectomy becuase my cycles were bad too, but I would never want a mesh again. I didn't even know they put that in until I got an infection from it. But I'm not a dr so I would check with one if I were you and see what they say.
My rsd pain seems worse at night and I don't sleep much either, but I don't have flare ups all the time. I don't know what triggers it. I wish I did. I really do hope you have a better night. My thoughts are with you. Take Care.

[Allanira]

Darlin I'm sorry. I'm in the same boat. I am watching the front move in and they are saying snow for your area too. Just rain for me but still the barometric pressure changes and we suffer more. I have been hurting none stop for almost 48 hrs. Was having a good week too. Wish the weather would just not change so we didnt hurt so darn much. Percocet give me hallucinations. Not fun especially when you tell your husband he looks like the devil and pass out when he tries to make a move on you lol. I will never take it again. This beast is a booger for lack of being able to curse. I have had burning stinging pain that is going to drive me insane. Plus my leg looks like a really fat red sausage. Almost like a giant hot link. I am praying for you and everyone else.

[Vrae]

Thank you all for the comforting words. I really do appreciate it! When nothing else helps, your words of knowing EXACTLY what I am feeling DO help. Thank you so much for the support! Last night was not as bad as the night before, thank God. The RSD was sure giving signs that is would be bad though.

Renee, I had taken high doses of ibu for a long time, and then the severe stomach cramping started. It hurt like hell. I am concerned that perhaps you too are falling victim of a long term use of ibu. It can tear up your stomach after a while. That stinks because ibu was my drug of choice for a long time.

Allanira, The front has arrived with fog. The clouds can’t get any closer to the ground as that is where they are sitting at the moment. Barometer at 29.84 and humidity at 82%. In this altitude, even the slightest change in pressure can be felt, and it’s interesting how I can feel it days before it actually arrives and then usually feel better once it has set in, or certainly when it has dissipated. I understand about that reaction to certain drugs. I hallucinate on morphine , therefore my alternative is dilaudid when things get crazy. I’m so sorry that you too are struggling right now.

Tessa, You’ve obviously been following along, thank you for that. It’s true, I have been rolling downhill at a pretty good clip recently, and not with wheels . Lack of sleep truly plays hell on the entire situation. Everything begins to get exacerbated. I hope that you can get some rest real soon.

Bram darling, you ALWAYS make me giggle with your British expressions. Okay maybe this one is not so British, but still… “fed up to the back teeth”. Yep, they hurt too so I guess that’s valid and I will steal this saying as well. Can’t wait to drop that on the family. lol Having your heart get shocks or twinges would be definitely scary! I hope that this is not often. Hell.. even once would be too often. I have heard of that with CRPS, but have not had it hit there yet. However, I started having something low (an organ, ie, balder, uterus, or something) flip flop, spasm last night for a few minutes. Starts to freak me out when I KNOW that the internal organs are being affected. It’s true, we are our own best physicians. Oh, and don’t let that pond get in your way… I would love to meet you and hot tea sounds great!

The Mesh: When my obgyn first recommended this he told me what a major surgery (hyster & bladder mesh) this would be. That stopped me in my tracks. Mostly because of the CRPS and I was going full tilt with my business. There was no time for recovery. Now I am glad I didn’t rush to proceed. The TV is flooded with injury attorneys seeking patients who have had problems with meshes. I guess the ole bladder will just have to continue its descent.

Hysterectomy: This has me in a quandary. My mother died of breast cancer back in 2004. She has five siblings, four of which are female, two of which also died of breast cancer before her. The two remaining sisters both had hysterectomies and both have not had cancer, and both have now outlived their other siblings.

I am definitely perimenopausal, and my cycles are bad; they have never been easy. As the CRPS gets worse so does the impact of this monthly hell. It can literally cripple me. I’m no doctor, but since I am my own best physician, my hypothesis is that the Neurotransmitters are packaging up additional hormones; Gonadotropin-releasing hormone (GnRH), Follicle-stimulating hormone (FSH), Luteinizing hormone (LH), Estrogen, Progesterone, and Testosterone, OR are being received by the receptors in a different way that is causing more, way more, pain throughout my central nervous system.

So not only do I have a prolapsed uterus and bladder, but the monthly hell the CRPS puts me through when I cycle, and then there’s the breast cancer factor, I feel like I am going to have to do something. I’m just not all together sure what that something will be. This is why I want to talk with my doc again and see what other options may exists, like perhaps just cutting the tubes. <sigh> I have no idea really.

Meditation: My mother tried to get me to do this. On a couple of occasions I have given it a lame effort. I feel like this is a good idea and have no idea why I’m not giving it more effort. This leads me to ….

Work: I am TRYING to get my final production out of the studio and I can put my business to bed. It’s a huge project for the CEO of a major hospital in Denver. No pressure. I have already missed my first deadline, and reached out to them pleading my case of CRPS and was graciously afforded more time. Yep, I played the CRPS card for the first time ever in my business. I have never wanted my clients to know that I was limited in any way. That pride thing is no good, I know. Anywho, so I am desperately trying to finish the work being limited to how many days, or hours in a day that I can dedicate. I am sooooo close to being where I can dedicate my days to my health, I can just taste it! I also want to get this darn thing wrapped up before winter fully sets in. Maybe, just maybe, when my world settles down a bit I can give meditation another go.

Whew; I think I touched on all points. Thank you ladies so much for your support. It means more to me than you know. and ps... today is better. Stiff joints, but better.

[RSD ME]

I'm glad you're feeling better today Vrae. And thanks for your advice on the advil. I'm trying to cut back on it, but then the inflammation in my hands and joints get worse without it. Which make's me drop things and have a hard time typing to you guys, which stinks. But my stomach seems a little better today without it, so for a while i'm going to try to stay off it to give my stomach a break. I hope you have a better night tonight. Get some rest and take good care of yourself.

[Nanc]

Hi Vrae! Glad last night was not as bad as the night before. This stuff really does suck doesn't it!?!

I may have mentioned before that I had a hysterectomy and o-rectomy 17 years ago, I was 29 Anyway, it was the best decision for me and I never regretted it. However, I did not need anything done to the bladder (no mesh or sling). Yes, I am having bladder issues now, but that is more to do with RSD, not the hysterectomy (bladder hasn't fallen). I see those TV commercials all the time about the mesh problems, so I can understand your concern. I can't imagine dealing with the monthly visitor on top of RSD/CRPS...ugh!

I sure hope you are having a better day today and good luck with your work. You are dealing with a lot!!

Hugs,
Nanc

[zookester]

Pardon me Vrae wanted to offer something for RSD-Renee because of the ibuprofen/advil use.

RSD -Renee - you might want to consider asking your doctor about Celebrex for the inflammation in your joints. It helps with arthritic pain and inflammation and doesn't have the same issues like long term use of advil or ibuprofen. Obviously any of those drugs has the potential to cause problems but celebrex seems to be the safer of the bunch and specifically helps those with arthritic bone changes/pain/inflammation. I have been on it now for 2 years without any side effects.

Be well,
Tessa

[zookester]

Originally Posted by Vrae

Oh man these flares of mine are getting out of hand! The RSD has really taken hold in my torso. Like every single muscle. Last night was horrible! It was like the muscles in my torso were squeezing me, REALLY, REALLY tight. Of course all the typical other pains as well, just elevated beyond belief. In these moments I feel like my body is nothing more than a torture chamber! I was back to taking everything in my arsenal last night, just to try and stay ahead of the pain and out of the ER. I guess it was a success because I was able to stay out of the ER, yay.

So the legs, feet, arms, hands are bad enough, but now with the massive involvement of my torso… wow. It was tough not to cry. I hate when I am forced to take Percocet. The stuff just wires me for sound and then I’m up all night, and ended up sleeping most of the day today. Funny (haha.. right?!) how nighttime is always worse. I can feel the RSD coming alive again today as the sun begins to set here. <sigh> I sure hope it’s not a repeat of last night.

My spams are off the charts too. Toes trying to curl, leg muscles contracting. This always worries me because I fear they will get stuck in a contracture. I was back to having to use a walker last night. Every muscle in my body was very weak.

I’m sure that the 45° swings in weather, a front on the way, and it’s time to cycle for the month have absolutely nothing to do with it.

My cycle plays hell on my RSD every single month. It’s horrible. I am thinking about finding out if they just cut the tubes and maybe I could be done with that part and get relief. My doc wanted to do a hysterectomy and some sort of mesh to hold up my bladder a few years ago, but I am just not sure I could handle the recovery and scared to death that the RSD will retaliate.

Sorry to just complain but last night was really bad and to say I’m concerned about tonight would be an understatement.

Oh Vrae,

I am so sorry that it just keeps getting worse. Seems that many of us are fighting back increased symptoms/pain right now... gotta be the weather. I too have been on the verge of tears for a few days and even with all my normal weapons in the bag I'm still not staying on top of it at times. Today I was able to squeeze in a nap that did help some.. I knew sleep had been even more disturbed the last few days so I assumed it was also adding to my inability to fight back the pain. Ugh..

Your post really caught my eye when you mentioned getting a hysterectomy and bladder mesh/sling. PLEASE, PLEASE DON'T get the mesh no matter what they "claim". There are so many horror stories of nerve problems with this procedure. My illioinguinal nerve has CRPS and is one of the nerves that can be damaged during that procedure... let me tell you it is no fun. Intimacy is a huge challenge as is just normal bodily functions. Please don't let anyone do this unless there is no other option.

Interesting that you share heightened symptoms during your cycle.. I was just looking back at my journal and realized how much more pain I too have during that time. My husband keeps asking when the "metamorphosis" will be complete.. hahahahaha Does anyone else experience this?

I do hope and pray tonight is better for you. It is strange how like clockwork symptoms start progressively getting worse at a certain time of day. Last year it started at about 2PM and now it is around 11AM. Thankfully I am an early riser so I try to get as much done as I can before that time. Sometimes it adds to the frustration of this because people who don't understand the disease don't also understand how I can do somethings early in the day an not later. Or I could be smiling laughing in the morning and then in or on the verge of tears a few hours later. .. ugh just part of this whole thing that can wear a person down.

Vrae - I will be thinking of you this evening!! Hang in there.

Tessa

[Brambledog]

Aww Vrae I'm so sorry. I'm not surprised you feel so crappy with all of that going on, you must be exhausted by it. Not to mention fed up to the back teeth.

I hear you on the monthly cycle thing as well. Always makes things worse, and I find I get more emotionally wired as well. I'm sure some of that is normal as you get older, but throw CRPS into the mix and it's all crazy

I can't advise you on the torso symptoms because I'm lucky that apart from my left side, my problems there have been limited to my intercostal muscles and the odd heart twinge freakiness. But no, as others have said, please don't have any operation or procedure anywhere near your bladder/reproductives - if the CRPS gets a hold in that area things will feel even more horrendous than they already do.

Do you do meditation at all? I was a skeptic but at times it has been invaluable to me, that time of calm and peace, nice smells, quietness or soothing sounds, just me and sometimes a voice in the darkness. I don't do it very often now (now that's interesting, maybe I should try it myself, might have been too long) but I was always shocked at how tensed up my body was, at how far from relaxation I really was. Fighting pain tenses every muscle and nerve fibre, and when you're doing that every single day it's no wonder our bodies short-circuit. The Mindfulness stuff is good, or there are free tracks on iTunes. It used to do more for me than the so-called painkillers ever did. The more I type this, the more convinced I am that it's high time I tried it again myself - it must have been a good three months since I did a session, and now all the symptoms are flooding back with the bad weather it's maybe time to start again. (Sigh)

I get contractures sometimes in my leg and foot, and massage really helps me. Have you been able to try it? Might be worth a go, as long as the therapist is clear about starting very gently and not causing extra pain, and using good amounts of natural oils to avoid causing more pain to sensitive skin... It calms me down as well, and relaxes me out a bit. Sorry if you've tried it and it's not been good.

Oh Vrae. I'd love to be able to take all that away and just let you feel better again. But we can't do that, and you know as well as any of us that you yourself are your best doctor with this. Try the things that have helped in the past, and try to think of something new. Equally, do see your doc and talk to them about all this scary stuff that's happening. Even if they can't do anything much to help, you might feel a bit better for having been checked over and getting it on record.

I'll be thinking of you and hoping for things to ease up for you very soon. Try to stay calm and not to panic, easy to say, very hard to do I know. If I wasn't on the other side of the pond I'd come over and give you a gentle hug and make you a cup of tea

Hang in there chick, you'll get past this time and to something happier.

Bram.

[zookester]

Originally Posted by Vrae

Oh man these flares of mine are getting out of hand! The RSD has really taken hold in my torso. Like every single muscle. Last night was horrible! It was like the muscles in my torso were squeezing me, REALLY, REALLY tight. Of course all the typical other pains as well, just elevated beyond belief. In these moments I feel like my body is nothing more than a torture chamber! I was back to taking everything in my arsenal last night, just to try and stay ahead of the pain and out of the ER. I guess it was a success because I was able to stay out of the ER, yay.

So the legs, feet, arms, hands are bad enough, but now with the massive involvement of my torso… wow. It was tough not to cry. I hate when I am forced to take Percocet. The stuff just wires me for sound and then I’m up all night, and ended up sleeping most of the day today. Funny (haha.. right?!) how nighttime is always worse. I can feel the RSD coming alive again today as the sun begins to set here. <sigh> I sure hope it’s not a repeat of last night.

My spams are off the charts too. Toes trying to curl, leg muscles contracting. This always worries me because I fear they will get stuck in a contracture. I was back to having to use a walker last night. Every muscle in my body was very weak.

I’m sure that the 45° swings in weather, a front on the way, and it’s time to cycle for the month have absolutely nothing to do with it.

My cycle plays hell on my RSD every single month. It’s horrible. I am thinking about finding out if they just cut the tubes and maybe I could be done with that part and get relief. My doc wanted to do a hysterectomy and some sort of mesh to hold up my bladder a few years ago, but I am just not sure I could handle the recovery and scared to death that the RSD will retaliate.

Sorry to just complain but last night was really bad and to say I’m concerned about tonight would be an understatement.

Vrae - how are you doing now? We are all wondering.. please check in and give us an update.

We care,
Tessa