[PurpleFoot721]

Hello everybody,

First I want to thank everybody here that has provided the support, information, opinions and experiences to not only for myself, but for everybody on here. This is a wonderful forum filled with a whole lot of great people supporting each other. I am so glad that I found all of you.

Unfortunately, I will be without the internet for the next week or so, so I will not be able to make too many replies. I will check in from time to time over my data plan, but that is very limited as I am still using my phone through the company that I work for. I am greatful that my dad, who owns the company, allowed me to stay on his plan while out of work over the last several months in exchange for 10-15 minutes a week it takes for me to do payroll and corporate taxes through the VPN and RDP that I set up before leaving in January.

We are making our big move this week from our house in Detroit to the small rental house that my husband and his ex-wife bought long before I met either of them, they are still great friends and she has warmed her way into my heart as well. We have been slowly moving since late June but it is time to finally pack up the rest of our everyday things and head to Warren, a suburb just north of Detroit. It was a hard decision to make this move, since the new house is so much smaller, but it makes things safer for our guests, and my husband and I. Although we live in a relatively nice neighborhood, it is still Detroit and we hear gunshots on a daily basis, some close but most off in the distance as well as all the other violent crimes that take place around here. On top of that, the new house has no stairs to try to navigate on my crutches. It means that we will be able to go for walks with our dog and many of the other things that we don't feel safe doing here. The move has put a great stress on my husband as he is doing most of the work, leaving me to sort through things to determine what to keep, what to donate, and what to throw away. I feel so bad that I can not help much more than the little things to get this move done.

Before I leave for a short time, I want to ask your opinion of where the CRPS actually began. It has been on my mind for some time and all the doctors that I ask just tell me they don't know. Here is my whole story:

In June of 2003, I fell from a roof and landed on an uneven section of concrete. When I got back up and looked down at my right foot, I was looking at the sole of my foot. When I got to the hospital, all of the staff cringed at how painful it looked. I was offered morphine several times, but I refused every time. When they finally straightened it and were feeling around trying to find all of the fragments of bone, my body finally said enough and I passed out. When I came to, I decided to finally allow them to administer morphine. After a six hour surgery, performed by the head of orthopedics at the 4th best orthopedic hospital in the country at the time, I woke up with 3 plates, 7 pins, 13 screws, a roll of wire, and an external fixation device to hold everything together. I had a trimalleolar fracture and I shattered my talus so bad that they were almost certain it would collapse. With the help of a great PT who used gentle manual therapy and multiple blood flow techniques, we beat the odds. After 2 1/2 years of pt, I finally felt that I was not gaining anymore from pt, so I said goodbye to my PT sometime in December of 2005. I continued to have a grinding pain and swelling on a daily basis, but there was nothing more that could be done by my PT.

In 2006, I had some hardware that loosened up and had to go have it removed. They removed everything except 3 screws and 1 pin that were not accessible without cutting the bone. I quickly recovered from that surgery, but once again, I continued to have grinding pain and swelling.

In 2011, 2 years after getting married, I tripped on something heavy that broke my middle tow on the same foot. I had no insurance at the time so we straightened it by taping it to the 2nd toe for several weeks. Ever since then, my middle toe would constantly turn deep red, sometimes purple and had this feeling of a tourniquet wrapped tightly at the base of the toe.

June of 2014, I could no longer bear the grinding pain that has intensified over the past 11 years. After discussing it with my doctor and going through 3 referrals, it was determined that the cartilage was completely gone and the best thing to do was fuse both the tibiotalar and the subtalar joints in my ankle by cutting a portion of the bone, removing the remaining hardware and installing a large rod from my calcaneus up into my tibia about 8 inches. At the same time, they would straighten my middle toe by doing a DIP arthroplasty, (fusing the most distal joint of my middle toe). The surgery was performed January 9 of this year. I did not have a whole lot of pain through the night since a nerve block was administered before going in for surgery but I bled bad enough that my original splint was soaked through. Before releasing me the next day, the surgeon changed the splint to a compression splint to keep me from bleeding any more. A couple of days later when the nerve block finally wore off, I was in agony. I called my ortho, but he just brushed it off as being normal post-surgical pain. Five weeks later, the splint came off and a cast went on. I was still in agony, but could now see that my toes were turning purple as well. Another call went into the ortho, but once again, I was told it was normal. It wasn't until June that we realized that it might be CRPS. July 21st, I was finally diagnosed but by then I was having complications in other areas as most of you already know, and the pain is far worse in my foot than it ever has been except when I finally passed out in 2003 at the hospital after the original break.

Phew; sorry for the long post, but there is a lot on my mind right now. I am trying to figure out if this has been with me for 12 1/2 years, 4 1/2 years or just this past 11 months. I know I shouldn't dwell on this too much as it is not good to constantly think of the pain or where it came from, but I also know that my chances of of remission go down the longer I have had it. Does the length of time make a difference in the treatment options? I just want to hear the opinions of those who decided to read through this lengthy post.

[stillsmiling]

Whew.....it's really hard to say, but in my case I believe there were many things that led up to my developing CRPS/RSD. I'm just being honest, and obviously no one can really know, but I believe it started with the initial break. That was a lot of trauma 12 1/2 years ago. BUT I did go to one pain management Dr. That said you typically develop CRPS within 3 months of the trauma. He definitely was the only one that ever said that. But just friend to friend it really does sound like you've been dealing with this a lot longer than just 11 months. I wasn't diagnosed until July 2014 but I had it a very long time before that. A great deal of studies say that it takes on average 3 years to get diagnosed. I don't know that it helps very much for me at least to try to figure out the hows and whens. It's a hard battle to fight though isn't it? I'm happy to hear you are able to move to a more user friendly home. We did that this summer, and just being able to get around in my wheelchair was huge, and then I learned how to walk again thanks to the set up of this home. I hope you find a great deal of peace and happiness there, and PS I think it is amazing that you are so kind to your husband's ex-wife. Moving is hard. Try not to be human and feel guilty about your husband or others having to carry the load of packing up and moving. I'm sure they are happy to help you in any way they can. Big fat hugs!

[Littlepaw]

You do have a lot going on!

I think the move sounds great! You can still go into Motor City when you want and have more quiet, safety, less to clean and no stairs. Sweet!

Reading your post I am struck by the history of trauma yet the lack of any major complaints about it, aside from grinding pain which had a cartilage explanation. Not much sounded like a chronic nerve pain issue.

the broken toe that discolored and felt like it had a tourniquet on sounds more CRPSy IMHO. In order to have CRPS you have to meet the Budapest criteria. If you didn't have discoloration or temp differences until 2011 I personally have a hard time biting that it was CRPS. You likely had some nerves compromised with all the earlier trauma that just finally said "enough already!"

I too have struggled with the question of when. I had obvious but not severe CRPS symptoms with my initial injury but they resolved, then came back after my nerve was injured. Then my nerve surgery made things much better but I went south after needing another procedure on the same foot later on. Seems like a theme here of our limbs have been messed with multiple times and CRPS finally showed up. I sort of feel like I was flirting with it a while but it didn't get going fully till 2014.

Unless your leg/foot/toe was purple or red like it is way, way back I say go with the later start date, earliest 2011. Personally, I would still go after treatments that fall in that window unless there is risk of spread with them.

I read an evidence based research article recently that showed better results with ketamine in chronic CRPs tha early CRPS, allaying much of my worry about having waited too long....

best to you with the move! be careful and take care of yourself!
Sending hugs,

[LIT LOVE]

Early on, I was very focused on what caused my RSD/CRPS. There were signs as early as the first knee surgery I had at 12--temp regulation issues, color issues and unusual pain. My foot is ice cold as I type. I didn't have the same type of burning pain, hypersensitivity, or limbic issues that I developed later.

It was with my 3rd wrist surgery that I clearly developed RSD/CRPS. There were some signs after the 1st or 2nd surgery that something was up--temp regulation issues again, freakish sweating in about a 2 inch band across my wrist. But, my life changed 4 days after that 3rd surgery. Months of pt 3x a week with ice, and icing at home surely didn't help. I had strange hair growth but just kept shaving my arms for years, not connecting the issue. After finally being diagnosed and doing fairly well with stellate ganglion blocks, I underwent a radiofrequency neurotomy that exacerbated my hypersensitivity to the point I had a hard time being driven even a short distance, developed light and sound hypersensitivity along with the vibration hypersensitivity. I had already spend a few years in a brace until I couldn't tolerate one after the 3rd surgery, but ended up likely causing just as much damage, including muscle wasting by bracing it near constantly to "protect" it for a 3 years or so. I was only able to break that bad habit with the help of a pain psychologist and finally taking strong enough pain meds to help--I caused likely permanent issues going up my arm and into my neck as a result.

I rarely go into my backstory anymore, but I ran across someone whose husband may have RSD/CRPS on another board a few days, and described my journey to her so she might recognize similar issues if they pop up, so it's fresh in my mind right now.

Purplefoot, it's impossible for you to ever know for sure, but it was likely the multiple traumas to the same foot that brought on the RSD/CRPS. If you're stoic and didn't complain long or loud enough for the right medical help, that maybe didn't help. In a normal situation you would have eventually healed and not ever had the lasting devastation from this bear. It is what is unfortunately. You'll have to do what you can to fight it, until you don't.

[mama mac]

By the time I saw this you may already be off line but I wanted to respond and wish you the best in your move. It sounds like there are many positives with the new house and location once you can get settled.
I have many times wondered the same thing as to when my CRPS started. My time line is much shorter from initial injury (Nov'14) and my injury certainly less severe, but it is a question I have had many times. Why and when? Your story and injuries are so complex it would be hard to say at what point you met the criteria. You have been through a lot!
Take care and hope to hear from you again soon.~mac

[DejaVu]

I am also responding late. I have not been on for a couple of days.

I am also thinking of you and hoping all goes smoothly.
We will miss you.
Looking forward to your return.

Take care during this time of transition.

Love and Prayers,

DejaVu

[JV1990]

I'm new here, but a old time RSD person! Officially diagnosed in July of 1994. Unofficially........after a car accident in 90'. A head-on collision with a big wheeled truck. A disc out in my neck, headaches, eye pain, arm pain. My motto was....when the going gets tough the tough get going.....went back to work......struggled through the the next 3 years with the pain getting worse.....then a minor fall (landed on my butt, well padded) Within 12 hours I was beyond pain. The only relief was standing in the shower till I could stand no more. My ortho said it was a the bulging disc, after being unable to deal with my complaints he hospitalised me. The only great decision he made! The IV morphine helped. They stopped it and I wanted to cut off my arm. The on call resident had anesthesia do a block.....helped for 20 min. He did 2 more blocks as a out patient. Then gave me the news, a sympathetic block will get us a better idea....well it did and I was "official" the swelling, color changes the burning ..worst of all..no one could touch me!

I had a care free (sic) 6moths till it spread to both my legs. The saga went from bad to worse.
I won't bore you with the rest. For me.....I believe it started with the car accident.....so did 2 docs.....2 others said nope....started after the fall.

Your a strong, determined woman. It started when YOU say it started! Moving is hard. Husbands like yours (and mine) are worth their weight in gold! Hugs
Judie

[Littlepaw]

Hello and Welcome Judie!

[mama mac]

I second that, hello and welcome Judie.~mama mac

[DejaVu]

Hi Judie!



Sorry you are challenged with chronic pain. Yet, glad you are with us.



DejaVu