Hey all,

Been searching through older forums to find answers to the many unsolved questions that roll through my brain. I have figured out that my CRPS is now starting to spread quicker than I had hoped, or even thought of. The pain is not under control and I'm waiting to hear about going to the Pain Clinic and seeing my first and new Pain Doctor. Its probably going to be a couple of months and by that time I'll be surely past 6 months or more.

The pain is not controlled, the Lyrica hasn't really been helping so I knocked it off it just makes me drowsy and more grumpy...Because I'm cantankerous when I'm sleepy. I take the nortriptyline, because it does somewhat help...Or so I keep telling myself, and plus once I get to sleep I don't wake up as much. But, getting to sleep? Almost impossible. Once I get there I'm gone for almost 12 hours. I have insomnia and regularly take Trazodone for it (off label use). The trazodone usually just keeps me asleep for 6-9 hours, which is more than my natural 2-4. I'm happy with it.

Walking as been...just a nightmare. As some of you may have read I live in a two story place. I've been pushing myself to walk, so I don't stiffen up more. This painful endevour up and down the stairs makes all my symptoms so much worse, and it usually takes hour for it to calm down again...Just in time for me to have to pee again and repeat it all! We are still trying to work out how to pay for a wheelchair, as I'm in no position to walk prolonged periods of time, such as grocery shopping, doctors visits, or anywhere that is uneven and will cause me to lose balance. Since what little I had of grace has SO left me.

I'm wondering, has any of you who has ended up having to use a wheelchair, come back from that? Start walking again, etc? What can I reasonably request my GP to help the treatment of my pain until I can see the Pain Doctor. Percocets, Lyrica, Gabapentin, Amatriptyline all don't work. Nor does tylenol of any strength, or ibuprofien...Though I suppose this wouldn't be considered the most painful condition to date, if it could just be treated with some tylenol and advil now would it?

My right ankle never really swells, since it resides at a temperature that reminds me of the ice I put in my water, but my left ankle swells to the size of a balloon, and I take naproxen to combat it when I notice its particularly bad. Since I know this can be hard on your stomach I try not to do too much. Also since I have no gallbladder, I try not to damage my liver too much, but pain is pain!

I am going to look into PT when I see the pain specialist, because I want his advice on what he would like me to work on.

So here are my questions:

Walking after having to use a chair?
What pain meds are reasonable to ask your GP to explore with you?
Sleeping with this friggin disease, is it possible?
What is a reasonable amount to expect pain levels to get to with treatment? 4? 5? Currently am at a steady 10+
How fast has your CRPS spread?
My right foot has taken a darker turn, and looks more blackish (not super super dark, more like I ran in some dirt) and blue tone, I am going to bring this up to my doctor, but so far no one has cared. Should I be worried about gangrene? Or is gangrene something that happens to certain cases?
How to you tell potential employers about your CRPS? Especially when you're in a chair?
Am I just crazy and this is a horrible nightmare?
Is rage something that is common? Just the other day I was SO annoyed by someone talking through my headset I threw it because her voice and perky glass half full attitude literally made me want to yell at her to be quiet, that one day life just becomes hell because you wake up with this horrible uncureable disease (even though logically its not her fault, and bravo for being glass half full!)?


Thanks

Lessa

Hi Lessa,

I am sorry to you are worsening and having to wait to get care. I am also a little concerned about what you might be walking around on. I remember you said MRI would take a million years, but did you ever have imaging of any kind, even an Xray? You said the sprain was off from the beginning...if it didn't heal or you got something like a stress fracture at the same time that will make a difference in your care plan. Pretty hard to get out of CRPS with unaddressed pain contributors...

I don't know financially if going private is something you can consider, but I know many of us have thrown all the resources we could muster at getting help. If you think you could cross the border and get to Seattle you could get private care. I ended up paying for my own MRI twice because it was cheaper that way. Austin prices are not inexpensive but MRI of the ankle and foot to the big toe joint ran only $550. I had to call around as pricing varied up to $1200.
Anyway, it is a thought if you need it....

Also, I am curious if you have tried walking in an Aircast boot? Immobilization is not good for CRPS BUT depending what's going on in there, getting pressure off may help. And you're out of it when not weightbearing. IF you haven't tried it, maybe ask your GP.

To answer some questions...outcome is different for everyone and my walking situation was compounded by surgeries (though I really should've been able to walk and stand within 6-8 weeks) but I went from spending a full year on a scooter with 9 months of that on crutches to walking a mile to 1.5 miles most every day now. It was accomplished through extremely gradual increments starting with going down the driveway. I also had to wean off devices, going from two crutches to one, and some walker use to cane, then nothing. Again, it had to be done slowly.

I had mirror pain in the beginning which I only have on very, very rare occasion these days. I think I have the potential for spread there but getting my pain controlled seemed to stabilize it for the time being. My non-injured foot is now doing great.

On discoloration...oxygenation is a problem. Light compression may be helpful if you can tolerate it. I had to use ACE wrap at first because the socks were uncomfortable.

I personally found tramadol to be helpful for pain. It is not a big gun opiate so GP probably won't mind trying it. It blocks NMDA receptors which is how ketamine works.

Rage, distress, anxiety, bouts of crying....you name it. Most of us have probably felt it at some point. It is really difficult in the beginning. I didn't settle for about a year and half or so. It takes time and support to get through the grieving but it does get easier. Hang in there. There is hope and the potential for healing.

I hope that you get what you need soon. I would imagine there are plenty of treatment options on the U.S. side. If you can pull it off it might be worth your while.

Sending hugs and healing love,

Hi LittlePaw, I'm glad you brought up the grieving part of CRPS. It is so hard being diagnosed and dealing, living with CRPS. I explained to a few close friends that is it similar to going through the stages of grief after you lose a loved one. Denial, anger, bargaining, depression, and acceptance (depending on the resource of the stages). Once you get through the initial stages, life does become easier as you realize you can only control so much and being angry and depressed and focusing on the pain, etc. surely doesn't improve CRPS, it only makes it worse. I know it's hard to not focus on pain when all you can do is curl up in a fetal position and sob because nothing can relieve that pain. I'm not saying not to try and fight with everything you have, but just try and keep things in perspective and try to keep a positive outlook. I actually didn't look up anything even remotely related to CRPS or even discuss it for more than a few minutes for a few years (this was about 2-3 years post diagnosis). Everything I looked up at the time was so negative and just made me think I was going to get worse and made me more depressed. I instead focused on getting better, anyway I could. Oftentimes my plans and goals for betterment had nothing to do with doctor's, many times the opposite. Alternative treatments, ways I could strengthen my mind and therefore my body. Ways to help others so I wasn't so focused on myself. I'm glad there are other like minded individuals on this forum that are focused on healing, not just the negative aspects of CRPS. We are given a unique perspective on life through all the pain and challenges of not being able to do "normal" everyday things that people take for granted. People always say to me "oh, I never even thought of that....when I mention something simple like taking a shower, etc. that can be very difficult for me some days. I guess I'm trying to say, stay strong, try and not be discouraged, even little accomplishments are a fantastic thing!!!

@Bio - I was specifically prescriped D3 just the way it is because my multivitamins come with the K2, and the cranberry has helped me SO much in the past with UTI's that I really don't get any. We use sensidyne here at home, and it has the xyl...whatever stuff in it. Both of us can be sensitive cold so hence the reason.

@Megs - I haven't really let myself grieve, as I was trying hard to 'not be that person' whatever that person is. But now I find going through the motions to be helpful. The only thing I do CRPS related is this forum now, and I try to look at the positive ones, or at least be able to help someone with a post. I've started to make a work out plan with my wife for some safe exercises to help me get back in shape, and just allowed myself to enjoy things without feeling guilty. I have found that explaining to my wife that I'm grieving has allowed her to understand my emotions and be there, being supportive is something that really has helped me! I don't look up cures, and I don't talk about my pain. One of the BIGGEST issues I've had is focusing and talking about my pain. So now I've vowed silence, as a couple of my friends pointed out that's all I talked about. Thank you =D

Lessa, I think it's healthy to talk about your pain, but with the appropriate audience and at the right time I know my husband can only handle so much as he absolutely hates that I'm in pain all the time, so sometimes when I discuss it with him, it just hurts him. I've tried to develop and figure out through the years whom I can talk to about this. Some friends I can tell about it sometimes. I've found though, the more you talk about the negative and the pain of CRPS, the worse it gets. You have to vent of course though!!! I find even just writing about my setbacks, etc. sometimes help. I literally will write a rant and just tear up the writings and throw them away. It is cathartic and really makes me feel better just getting the anger about the pain, etc. out of my system. I'm pretty weird though, so what works for me may not work for others

@Megs - Thank you again. I'm working on not being that person, and actually had a long conversation with my best friend about random stuff (including her schooling) it was nice and refreshing! I currently take trazodone for sleep and it still allows REM, I wake up and I've found its mostly due to pain, since I've figured it out, I just change some of my pain meds around and it seems to be working better, thank goodness!

As for any natural supplements, I read up on them through the web on trusted medical sites and will even ask my doctor before taking. I don't want any silly reactions or something. Thankfully I don't want children, so that's not a worry.

@JV - I know anger has major issues. I'm waiting to hear back from the pain center. My new GP is going to prod them along if we don't hear anything from them in the next couple of weeks, seeing as he feels that its unfair to me (that's probably not the word for it) to wait.

Lessa, I posted before. But wanted to let you know again, it is ok to talk about your CRPS issues, just don't make it all you talk about, that's when you become "that person" you described. Letting yourself grieve, at least to me and the one person I actually associate with in person with CRPS has helped us tremendously. It's like letting go of a huge burden. You may need to grieve alone, you may have help, you may need counseling help to get through this, all of those are completely normal!!! Any "normal" person would be incredibly upset by realizing that they can't do a lot of things they used to be able to do and their life is altered suddenly by this thing.... I am so glad you explained to your wife about the grieving process and she was receptive to that. It is sooooo very hard for people that don't experience all our challenges and pain daily to get or understand a tiny portion of it. Like I said in an earlier post, I don't think you have to go the complete silence route, as you need to vent. Just find the appropriate audience to do so. Like I said before, I avoided support groups, etc., like the plague before as they were very negative when I was diagnosed (2004) or maybe I just didn't find the right place. I feel there are many kind and knowledgeable people here that really just want to help. I guess that is where I am at right now. I am having a very hard setback and other (new) medical issues so I would just like a distraction now in helping others so I don't think about myself. Please don't feel sorry or anything for me, I just want to help you all. Take care and let yourself grieve your losses due to CRPS (don't focus on them), just try and let them go and focus on the good and great things you can still do!! Also, always know now, you can be of tremendous help to others that are suffering as you have been there and have the awareness to try and take care of yourself. Sorry for the long reply. I am currently trying to focus on anything but myself

So here are my questions:

Walking after having to use a chair?
What pain meds are reasonable to ask your GP to explore with you?
Sleeping with this friggin disease, is it possible?
What is a reasonable amount to expect pain levels to get to with treatment? 4? 5? Currently am at a steady 10+
How fast has your CRPS spread?
My right foot has taken a darker turn, and looks more blackish (not super super dark, more like I ran in some dirt) and blue tone, I am going to bring this up to my doctor, but so far no one has cared. Should I be worried about gangrene? Or is gangrene something that happens to certain cases?
How to you tell potential employers about your CRPS? Especially when you're in a chair?
Am I just crazy and this is a horrible nightmare?
Is rage something that is common? Just the other day I was SO annoyed by someone talking through my headset I threw it because her voice and perky glass half full attitude literally made me want to yell at her to be quiet, that one day life just becomes hell because you wake up with this horrible uncureable disease (even though logically its not her fault, and bravo for being glass half full!)?


Dear Lessa, I have cold CRPS 2 mostly now but let me give my opinions in order of your questions.

Walking....that is going to be a tough one. I would try those walkers w a seat....and walk a little sit a little. When my ankle broke it was hard after being confined until it healed. And I still use a cane.

None of those meds worked for me either....even the over the counter stuff. I am currently on low does nalterxone but for me, my hot crps isn't as hot but I still suffer with the cold.

Ahh the much needed sleep. It is possible but it doesn't last orchappen every night. I am not a nap person but without rest I was so stressed that whenever I felt I would sleep I would lay down...didn't always work. But oh that first full deep sleep took a weight off....I can't recommend them sleepy time stuff cuz it made me shakey when I awoke. Even with muscle relaxers, sure I slept but it was restless because I would wake more tired...ldn helps me sleep most nights.

How fast can this damn monster spread? Like wildfire....

Blue foot happens.... How's your circulation being in a chair?


You have to be honest....sure they see you are in a chair but they can't see your pain and how in the blink of an eye it escalates. I think it also depends on the kind of job you are applying for.

Sorry this is not a nightmare but your life...you are NOT crazy and YES rage is common. With lack of sleep a stupid question can push you over the edge. Mine is also in my jaw and having to repeatedly state something and have someone say see you can talk was like nails of every human on earth on a chalk board!

You will have better days...don't over do it....and those hell on earth days cut yourself some slack....vent here we will gladly listen.

It's a new adventure. It hurts like you know to do the things that you used to or come naturally to others...be kind to you poor body....put your mind at ease when you can. A monster resides within you....but you are still in there too.
Keep up the fight.....

I was in a wheelchair for almost a year when my CRPS spread. I am now walking and working full time again so it is possible. I use a rollator though (4 wheeled walker with a seat). there is no way I could do anything approaching the amount of walking I do without the walker. It helps for many reasons...the first of which is that it takes a lot of weight off my legs where the CRPS is most severe (I have it in both arms too). The second is that it keeps me walking but keeps me using a normal gait. Its important to keep walking "correctly" and not stooped, hunched over, or limping as that can easily cause a lot of other physical problems and the last thing we all need if more pain on top of this terrible condition. Third...the walker gives me a place to sit whenever I need it. Fourth...it keeps me safe from falling since my balance is so terrible. The walker keeps me functioing and that is HUGE for me in terms of managing this condition. Do not be afraid to use a mobility aide...whether it be a wheelchair, a walker, or a cane. use ANY means at your disposal to keep moving and living your life. I was never able to find meds that helped very much so I currently take nothing for the pain. my entire focus has been on regaining function and continuing to live my life as that is the best thing I have to get me through the pain.

As far as the sleep goes, melatonin supplements can help with that. It comes in tablet or the kind that dissolves in your mouth. It won't help with pain, but it may help with insomnia.