I have been quiet on here overall, trying to manage my pain behind the scenes. Occasionally I may post something that I am struggling with but for the most part it takes all I can do to get through the day so I don't have the energy to post and when I am feeling good, I don't want to stop and think about CRPS.

Tonight I just need support as I feel like CRPS is taking off in a whirlwind. The flare ups seems more frequent and now seem to be coming on without any trigger. I also fear that the CRPS is spreading into my lower back as my back continues to have spasms and very intense pain (burning, shooting, pressure and throbbing). This evening I worked late and got home home about 8. I have an hour drive home and that almost sent me over the edge, sitting that long and the vibration of the car. When I got home, My boyfriend (who is amazingly supportive) took me out for dinner. Well as I sat in the restaurant my pain shot up and all the sudden it felt like my foot was going to explode if I didn't get the boot off.(I wear a boot cast bc of CRPS). I asked if he minded getting food to go and then I went to lay down in the car where the pain continued to escalate…everywhere. This is something new.. Usually it is localized.

I also went to my General Practitioner today for a check up, flu shot and blood work and she did my paperwork for the handicap parking. Even though it isn't a big deal, it was so tough to see the permanent box checked off.

I have an appointment 10/2 with UVA (university of Virginia)PM clinic and am doing a consult for Ketamine Infusions. The date can't come soon enough. I don't know if I can live with these flareups for the next month :-/

I hope the rest of you are having a pain free week.

Well, i guess im not the only night owl in this group. From what you said, it sounds like you were a busy bee today. No wonder you're hurting all over. My advice--- go to bed. Hopefully with some rest you will feel better tomorrow. Just try to take it easy tomorrow though-postpone anything thats not essential. I hope tomorrow is better for you.

Unless you want it to get worse you need to change your lifestyle. According to one survey 66% of us are too disabled to ever work again, think about going part time before you are forced to stop working completely. I know its hard before CRPS used to do 60hr weeks now I'm virtually housebound and on the odd occasions we do go out I'm stuck in a specially modified wheelchair

Hi Inspire,

You had a full day for sure. For a long time any one of those things; hour car ride, going to dinner, working all day would have totally set me off by themselves. Heck, depending on the day my foot might still get set off doing ALL of that.

Is there anything you can do to make the drive easier? I used to put a folded up towel between my foot and the floorboard or pull my foot up on the seat because of vibration setting it off. Obviously, you have to be careful with this kind of thing to stay safe while driving... Can you switch cars for the commute if your boyfriends car is cushier? Put some nice accommodating lumbar support? Small changes can add up to tangible relief. I would avoid dinner out after work. It is one more stress on your body when you might just need to lie down, prop or do what it takes to get comfortable. Keep nights out for the weekend and have your honey pick up take out from your favorite place during the week for a change and break from cooking.

Dang it on the boot. Is it for the CRPS or something else still going on in there?Did you get the follow up MRI you were trying for? Do you know if your tendon healed or healed properly? This is important. If you get the ketamine it is best to have pain contributors fixed ahead of time so that you don't re-sensitize.

IMHO your nervous system is overloaded. I went through a time like that and my entire left side would buzz and jerk. Do whatever is needed to get things calm. Take exceptional care of yourself and try not to overdo. I know it is tempting and sometimes necessary but you gotta stay comfortable.

sending healing love and hugs,

Thanks everyone.

I have changed quite a bit of my lifestyle, I have been forced to change 98% of my lifestyle. I use to work 70 (+) hours a week, I kiteboarded and sailed on the weekends. When I had time off, I would travel and explore. Now I can't live alone, I work a gov't job and I can't even do my laundry. Work is the one thing I will continue to hold onto. I do worry about the difficulty of working 9 hours plus my 2 hour daily drive. Right now not working is not an option. Mostly because it is my sanity. It's the only social aspect of my life now that I was forced to move thousands of miles from my home to be closer to family. My career is also a core part of who I am.

It is the little things that help. I agree Littlepaw, just having a towel under my foot can make the biggest difference. My physical therapist cut up some foam and made a block for me to rest my foot on. I bought a nice comfy car with heated seats to help with the drive and sometimes listen to audio books or do an interactive program to learn Indonesian…. I am filling my life with little things and it is helping tremendously.

It's those days when the pain comes out of nowhere and radiates through my body. I'm not sure why there is no trigger to those days? Yesterday was slightly busy but not out of the ordinary. Today was much busier & I came home with my pain at a 6 (which is low for me).

The boot. ugh, it's horrible. And stinky (ha!) I had it off for 6 hours on monday at work and I did great! The next day, couldn't get the tennis shoe on. Today can't get the shoe on. I wish that triggers to this made sense. I've tracked everything from diet to mood to menstrual cycle, to activities and sometimes there is of course a correlation and other times there is nothing and I can't get out of bed without excruciating pails it was n. No doctor has even taken the boot off to look at in over a month. It is as if they don't understand it so they can't help. I have decided for the my next appointment I will rip the thing off and make the doctor look, test and examine. As soon as a dr reads CRPS in my file, I am treated completely different. As is I either had a conversion disorder or a death sentence or both. When I advocate I am treated like I have some type of manipulative personality disorder and trying to get drugs and therefore not taken seriously. No MRI yet. I was told it was CRPS and nothing was wrong. Yet no one knows why I there is no progress being made with the boot.

My back is feeling a little better today and I hope to get in some gentle stretching and yoga tomorrow.

One day at a time.

Dear Inspire,

Like you I have been treated like a drug seeker. I realize now that the uninformed medicos could not believe it was possible for me to have unbearable pain based on my injuries. Also, I had a new pcp, who did not know me. I recently watched a Youtube video which showed typical drug seeking behavior and of course, this is pretty much how I presented.

Regarding the handicapped placard, mine expires in 5 years. I would prefer a permanent one, because it eliminates going through the application process again.

For me the boot and the braces made me worse. The big, clunky shoes with inserts for overpronation made me worse, too. Fortunately, the PTs I saw recognized what was happening and encouraged me to walk barefoot, along with other exercises, so that I could strengthen my feet. It was torture at first, because a tiny crumb on the floor would unbalance me and knock me down. I was walking on the outer edges of my feet, over supinating, in a vain attempt to escape pain. I bought a product called Correct Toes to help me regain my arches and fix my gait.

Regarding triggers, I set myself up for unbearable pain when I overdo any pro-inflammatory foods like dairy, sugar. Also, i live at the whim of barometric pressure. A change in it literally attacks my me from head to toe, I want to move to Hawaii which has zero days of barometric changes. Sleep hygiene is another factor, if I mess up my routine even slightly I suffer. Temperature changes are a bear, too. I cannot be too hot or too cold, although since I started taking LDN I stopped shivering and shaking in icy rooms.

Have you tried infrared heat on your back?

http://neurotalk.psychcentral.com/thread9620.html

i hope your flare ups subside soon and that the ketamine helps make you feel less pain. i will keep you in my prayers.

Hi Inspire,

I am glad you have a comfy car. It does help. It sounds like you are doing a lot to take care of yourself.

I applaud your decision to make sure the doctors take a look at that foot. It can be too easy for every symptom we have to get lumped in as CRPS when sometimes it isn't. (flashback to my rash that was NOT neurogenic and other members infections, cysts etc that caused pain that was not CRPS). What concerns me from the outside (and without knowing details so forgive me if I am off base) is this tendon issue. You said it ruptured which is really serious and will cause swelling, pain, inflammation and later mechanical changes to the entire foot if left untreated. Sometimes tendon ruptures can heal in a boot, but sometimes they dont and require later debridement and repair. Without either imaging or a through ortho exam really putting that foot through physical manipulation testing I don't know how it can be assumed your pain and swelling is all from CRPS.

Ketamine is a powerful treatment and it is doing a lot for me but if I had a torn tendon that didn't heal right then probably not so much. CRPS raises challenges to healing properly, inflammtory factors are high and circulation is poor. Please go to bat for yourself and make sure all is as it should be in there. I would think the docs would want to be sure too. Make sure the new ones know the rupture history and that there hasn't been much follow up at least from what I have read. Again forgive me if off base. Sometimes people have had everything in the world rechecked already. If all is well then your outcome from the ketamine will be much more positive.

Hang in there girl.