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.