CRPS T1 Spreading, Pain, Walking..Plain simple just need some advice
 

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, :hug:

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.

Thank you so much for your responses!

@Littlepaw, I had imaging done when I sprained the ankle originally. An xray a few hours after the incident, and then a follow up at 6 weeks, and 12 weeks. I don't break bones usually, and my doctor noticed nothing out of the ordinary then. In June when my foot started to hurt I was convinced that I had broken something. Two xrays and one bone scan later determined that was not the case. Currently our finances could not handle private doctors/imaging, but I think there is a place in town that does MRI's privately if needed. I'll have to look into it (and then take out all my piercings, oy vey), but I do have those consults sent in. Maybe I'll just annoy the hospital until they push me through. I did have an aircast, and was using it during the beginning of the pain, because we were hoping immobilizing it would give it the time it needed to heal. Sadly now I can't wear it as I can't tolerate it.

Also I eat 2 tramadol every 4-6 hours, and am usually counting the hours to use it again, even though I haven't noticed any real respite. When the pain came back in June I tried taping it with KT tape, ice, tiger balm, and a few other muscle related things. All ended up with me demanding it be off NOW. Like super now! That was horrible.

@Enna, my circulation is fine in the chair, except my feet are still cold as ice. I will admit my feet have always been a bit cold, but this is cold for me. If I can tolerate it I wear nice warm wool socks, and they seem to help with circulation. If not I wrap myself in blankets I've desensitized myself on and they seem to be okay.

@Catra I can't manage even a normal gait, its this weird walk, shamble, limb thing. I have used crutches and a cane in the past, and still use the cane to get into the car (as I haven't figured out how to any other way from my chair). I also use the cane to slowly shuffle in the house...when I'm not being stubborn and saying that I can do it just you watch me! It usually ends in horrific pain though. Darn my stubbornness. I'm thankful it hasn't been determined to spread up my legs, though the lower ends of my calves hurt like nuts. I do continue to wiggle my legs throughout the day, and move them quite a lot. I also slowly rotate my ankles and flex them, and slowly move my toes and do some foot exercises in the air, to keep those joints moving. I stop when it becomes too painful. I do this throughout the day on and off depending on pain, as I know how important it is to keep joints moving. It is difficult as they're always stiff, but I'm determined not to let them freeze up and cause more grief that way.

@Swimtime due to my insomnia melatonin does nothing for me. I have been recorded to take 300mgs and still be awake. My doctor was just about contemplating a horse tranquilizer when finally we upped my dose of trazodone enough. At first I was on trazodone and zoplicone, but weaned myself off with instructions from my sleep doctor. Since I was not respondent to CBT (congition behaviour training), she gave up on me. Part of my sleep issues is minor sleep apnea but I have a machine for that. I'm literally just lieing awake because I hurt, or I have energy I haven't expended, because I can't walk anywhere! I used to be an active person, and some days I feel it more than not.

@All, I do take antidepressants, took them before for clinical depression. Before all this started to happen my mood was more happy and I was more balanced. I didn't have a glass half full view on the world, but I was content and happy with my life. Now my mood is horrible and I have yelled at my wife for NO reason. I apologized every time, but I feel horrible for doing so. She understands the amount of pain I'm in, so she tries not to be too hurt by it, but its not something I want to practice. She is the light in my life, and a woman I love dearly. I have been practicing deep breathing before I speak, as well as reminding myself its no one's fault, and that the blame lies no where. Lady Luck just wasn't on my side, and this is a test to make me stronger. Sometimes I can't control it. I will continue to deep breathe, and I'm going to therapy, so perhaps she has some techniques there that'll help me.

It doesn't help that I'm a woman too, and that one week a month makes me already agitated, especially from cramping as I have severe cramps. The IUD I had put in has helped immensely with that, and I rarely get the cramps, but man those times I do I just want to curl up under a rock and sob.

That being said she is my biggest cheer leader, and when I'm particularly low she is my shoulder to cry on, my rock to cling to, and my hope to feel. She reminds me of all the good in my life, from our two beloved cats (we don't want children, they are our 'children'), to our hopes and dreams. Usually I can get through it, but its the rage that blind sides me, as I know I have a temper, and have worked diligently to learn to manage it and do not usually have any rage outbursts anymore. As a child I did, but have used many coping mechanisms to over come it, from deep breathing, to excusing myself to allow myself time to just sit there and calm down. I used to go for walks when I was really pensive, but that has become difficult...And this dang wheel chair that I'm renting isn't that great for outside. Its fine on flat, but I live on a very hilly/mountainous island.

You all have wonderful ideas, I'm going to re-approach my doctor about imaging, perhaps he can be a little more pushy and get stuff done. I will also look into how much it costs. We do have third party insurance, which does cover things. Its just a matter of having the money up front so they'll pay us back. Also we're trying to save our medical equipment funds and payments for the bigger things I need, such as a walker or wheelchair, and PT.

I think I may ask my doctor for some patches that help with pain, or other medications. I hate asking for stronger opiates, because I worked at an addiction centre, and saw all too well the effect Oxy had on people. But I feel like I'm running out of options and honestly, opiates may just have to be the solution, until a pain doctor finds something else.

Oh my goodness a wonderful update!!!!!!

There is funding available to me as a military spouse to get walking aids/wheelchairs/etc!! I'M SO FREAKING HAPPY!

Lessa,

My daughter told me evening primrose oil has helped her with her severe menstrual cramps.

I just went through my notes from watching Dr. Chopra, etc.

No electrical stimulation, no nerve blocks, no hyper analgesics, no SCS

No ice

No opiates

Take NAC 600 3x a day and alpha lipoic acid 1200mgs, vitamin C, magnesium

LDN

Also pea pure-not sure about where I found this or the following,

Avoid needle stick trauma.

Chest ports are less painful. Pic lines continuous trauma.

Congratulations......:grouphug:
I wanted to add that cold feet can be a circulation thing too....even if you had it before crps it's goodvto have that looked into....

Lessa,

Everyone has given some great advise so far. Here is what I can say from my experiences.

What your doctors will prescribe is all up to what they feel comfortable giving. I am with a pm doctor that likes to use different opiates first and work from there. Although I have only been to his office twice, I have not found anything that works better than the Amatriptyline to relieve even the slightest amount of pain. Even that only seems to take me from an 8-9 to a 6 at best, but usually a 7.

Have you tried looking into some local churches, hospitals or even Craigslist for a wheelchair? I bought my wheelchair on Craigslist for $70US a while a go and it was brand new. I purchased it from somebody who bought it for their mother that passed away a couple of days after they bought it. It even had the elevated leg attachments to keep my leg elevated while out. I have not used it yet but it is there in case me and my other half want to try to go do something around town or go shopping together. Churches will often have chairs donated to them to give to those who do not have the finances to purchase their own equipment.

I am sure you are elevating your legs. I do not know if you have seen the picture of my foot on my personal page, but mine has gotten worse as the cooler weather has moved in. It goes to more of a muddy color if I don't keep it elevated. The only thing that seems to help is keeping it elevated. Try to keep higher than your heart. It needs oxygen or the tissues will start dying. Moving the muscles as much as you can will also help with blood flow and hopefully help with the oxygenation as well. Movement as much as tolerable is better than just keeping it elevated all of the time though.

You have to remember, you are dealing with a lot of pain that does not seem to ever want to go away. It is easy to get frustrated. Just the other day, I got so frustrated at my crutches that I threw them to the floor as hard as I could. Realizing that things that were so simple before have become such a burden and so difficult anymore is very frustrating. Not to mention dealing with all of the pain that this monster brings. Just try to keep as calm as you can. If you loose it, go scream into a pillow hit it or try something that won't hurt anything. Releasing a little frustration can help sometimes.

Like Enna said, this monster is horrible, it can spread like wildfire. My first PM doctor was surprised at how aggressively this has spread in me. I had an ankle surgery in January that brought this on and by august, it went from my right ankle to my entire right leg, both arms, shoulders, neck, upper back, and my left leg from the thigh to just below the knee. A recent blood draw has caused my left arm to give me more problems than my ankle.

Yes this does feel like a nightmare. That is why we are all here, to help each other through this nightmare and share our experiences, give our thoughts and vent when needed.

Lessa,

Congrats on the device coverage! Thanks for clarifying your imaging, I am glad you had that done. Not everyone has so I just like to be sure those bases have been covered.

I second Catra on the rolling walker, mine had a seat also and it was a Godsend when I was using it. She didn't mention that she had a beautiful baby girl after her diagnosis of CRPS - a testament to the wonders that can be accomplished even with this disease. I'm pretty sure she has most of us beat in the "fun and amazing things done after CRPS" category.

The PeaPure (palmitoylethanolamide) that Bio spoke of is available online. In the US we have to order it from the Netherlands. Maybe you have it there. I have taken it off and on from the beginning.

Also, my gait was totally jacked and I had to relearn how to walk in the pool since gravity was just too much at first. That is a great place to start.

:hug:

That is wonderful news. Yay!!! You posted this while I was typing my last message. I didn't find out about it until just now.

Yes!
 

Great news, Lessa!:D

Much Love to you, to your wife and to your kitties.

:grouphug:
DejaVu

@Bio I have written down all these and the next time I'm by a healthfood store/supplement store I'll take a quick look and see what they have in stock! I take vitamin d3, as it is awefully dreary here during the winter with all the rain and no sunshine. As well as cranberry pills (UTI related). I also usually take a multivitamin. Sometimes I forget to though gah! As for needles, I always inquire why I need them, what's it good for. Can we just take a urine sample instead? I don't enjoy being poked (though my numerous tattoos and piercings say otherwise..hmm). I have noticed if I say...whack my knuckle on something it smarts for a longer time than it should, and it hurts way more than it should. I'm very clumsy and accident prone naturally, so now I fear I may just have to live in a bubble to stop my clumsy nature!

@Enna cold feet run in the family for some odd reason. I have been poked and prodded and there should be no reason why they get cold. They just do. Silly things, its usually not terrible just minorly cold. Only becoming very cold if its freezing outside and I've refused to wear socks. I also hate things on my feet, and the theory is I'm just not wearing socks, or slippers, or something, enough to help maintain the temperature in my feet. Now though, I will be wearing socks and I can feel the cold radiating from them. It takes forever for my natural body heat to warm up my toes =(

@All Thank you so much! Its a huge huge stress of my plate to be worried about devices to aid for mobility. They also will help with finding a new place and any renos we have to do. Needless to say I'm ever greatful for them. I appreciate all the out pour of love and support, its been really needed, and awesome at this time. :hug:

@Little When my ankle started acting up in June, I was convinced I had broken something, since it just hurt like no other, I figured I had done something to snap a tiny bone. So I insisted on imaging to get to the bottom of this mystery.

Also we are going to talk to my PT friend about if the pool where she works at can be warmed up. Cold makes me far worse, as I already have cold CRPS, and so a regular pool is out of the question. Hopefully the pool at the PT office can be heated to a more bareable temp for me!

@Deja thank you! We appreciate the love, and send lots back to you and yours. I'm so relieved to hear that we won't have to scrimp too much to get by.

@Purple, my legs are generally elevated a good portion of the day, but I do let them just hang around and be normal. I find its easier to stretch them when they're just being in a normal sitting position. I also ensure not to stack my feet onto of each other. Always having them each with their own area, so no one foot is hurting the other, as it seems with the lack of sensation my feet like to play the game of 'lets be dead weight and hurt the other foot'. Its a wretched game.

D3-the only D worth taking, needs to have K2 with it, to direct calcium to bones and teeth.

D-Mannose powder is one of the best things I ever found to deal with e-coli UTIs. My mother lived with chronic problems until I found this. From 2006 until she died she did not have another UTI. Please check out the reviews on Amazon.

Check to see that your multi contains B12 as methy B, not cyano B.

Ask for pediatric needles. Ask that the area be numbed.

If you have any kind of sinus problem, try XLear. The xylitol in it is the efficacious ingredient. I use it every day.

Also, teeth- xylitol is excellent for dental health. You can buy toothpaste with xylitol or chew xylitol sweetened gum. I read that we have to take super care of our oral health. Floss and brush more.
http://www.dentistryiq.com/articles/...-numerous.html

Liquid lanolin helped my feet on several levels. It seemed to help block drafts lessening allodynia pain. Good for dryness.

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!!! :hug:

@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 :hug:

I know this is a very low level type of help for sleep. I know camomile tea is very calming and helps many people. There is also a "sleepytime tea" by celestial seasonings that helps some. Also, things like not watching TV, being on the computer, or other devices for at least an hour or so before you try and sleep is helpful. I agree as well with swimtime, melatonin is helpful, it can (or at least with me and many friends) gave us really vivid dreams or nightmares. If you absolutely are not helped by natural aids, etc. Ambien and other sleeping pills do the trick, they are very quick acting and even if you are in pain, you will fall asleep. I took ambien for about 4 years, not good, but I couldn't sleep. Ambien (it's generic now) knocks you out. You may be groggy in the morning. Also, you need to be aware that it pretty much does not allow REM sleep (so no dreams). When you stop a sleeping medicine like this, you go into "REM rebound" which is pretty scary as you have non stop dreams/nightmares as your brain is compensating for the lack of the REM sleep. I hope you can get the rest your brain and body so badly need. :hug:

Biobased, Yes, I agree with most of your supplements. Evening primrose is very helpful for "female issues", but should be avoided if you are trying to conceive. I had good luck with NAC for about a month. Then I had issues, honestly I have so many health problems that I don't even recall what the "issues" were (this was over a year ago), they were concerning enough for me to never take the supplement again and return it. Maybe it was a bad batch. I know people think "natural supplements" are just that, natural and safe. I take a lot of supplements so I am not against them by any means. Just try and do the same "vetting" process that you would for a new medicine that is prescribed by your doctor as everyone does not have the same response to anything they put in their body. Take care all!

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 :D

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 :hug:

Rage......YUP!
 

Hi,
I've been battling this for 20+ years. When it first spread to my legs and yes they turned many and varied colors, swelled to the point of the skin splitting. Wound up in a wheelchair for 2 years. Rarely saw my bedroom (second floor) and forget the 3rd floor! Every couple of days I'd navigate up the stairs to shower. Lots of tears getting there!

Participated in the use of subQ Lidocaine for pain control. It brought the pain down to a 5. The physical therapists associated with my pain doc, kept me moving while in the wheels. The PT became much more bearable with the lidocaine. That was 16 years ago! My legs are not doing well..but old age has snuck up alongside the RSD. I use a cane and when we travel I'll rent a scooter. Wonderful way to see Disney!
You can use the "assistive" devices (WC, canes etc) as needed. It keeps me sane.

After all these years the rage comes and goes. It's lessened over time,but then I now get angry at the aging process (LOL)

@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.

UPDATE so today the OT came in, and she ordered a framed walker for transfering (to the car, to the toilet, etc etc), a shower stool so I can bathe more often, a commode so I don't have to go upstairs to pee, and if the red cross (where i can get this stuff for free) has a good wheel chair, a wheelchair to borrow until I get mine within the next few weeks. Otherwise I continue renting this wheelchair.

I'm so relieved that she did all this, and she's going to continue working with me, and the dealer for my chair until I have the perfect chair for me. =D

Lessa,

TKY for the update. :)

These new aids will vastly improve your quality of life. I wish that every person who has difficulty showering would be advised to acquire a shower chair asap. I lived without one for almost a year, shear torture-denial.

If you half fill the commode bucket with water it will reduce odor and staining. At one time Amazon sold an odor reducing, charcoal filter which could be stuck to the commode lid. Something like this:
http://www.amazon.com/Activated-Char...odor+absorbers

Also, a plastic bag is a good item to use for transferring. Another item I like is a handle that attaches to the cahttp://www.amazon.com/Stander-HandyBar-Automotive-Standing-Emergency/dp/B000GUKKMW/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1448017991&sr=8-1&keywords=Door+handle+car+handicappedr frame.I originally bought mine to help my mother
get in and out of cars-now I use it.

Thank you! We are actually looking to probably trade our car in for a van or something with more space in the back. When we do that, we're going to be putting adaptations in. My wife helps me transfer, but this item may help.

We are going to put water in the commode for sure, I'll look into the odor reducer though! The only reason I'm able to get a shower bench is because my OT demanded I have one (and I agree), because otherwise I barely have showers, and just spot bath. Plus I'm loaning all this stuff for free =) When we move we are going to buy this stuff. Which may take months.