Reflex Sympathetic Dystrophy Support Group

Hi All,

my name is Jody and im 36 YO, in January this year after a second surgery on my left foot i was told i was suffering from CRPS. I had no idea what all my doctors were talking about until my local GP handed me some information on CRPS to which i have now researched and think i have a full understanding of. I stumbled across this support group while looking for info on a support group like this and am pleased to have joined. My life has changed in so many ways now after being able to work 50/60 hours a week which i loved to not being able to walk around my own house.I would love to be able to chat to people who understand how i am feeling and help me understand more about CRPS.

Jody, welcome to the group. Please feel free to read past emails and topics. There is a treasure of information on us and on our experiences with this disease we share in those emails.

Did I get it right that you are just months into this monster disease? If so, you need to get a referral very quickly to a pain specialist who has some expertisee in treating RSD/CRPS patients. In the first 6-8 months of the disease, a course of repeated nerve block in the proper nerves as they come off the appropriate vertebra (lumbar for feet.lags, usually stellate ganglion blocks if our affected limb is arm/hand) and intensive physical therapy are a means for the lucky ones of us to remission. If you are indeed in that time period, you must be sure to get to the appropriate pain doc and get into that treatment to seek remission because remission right now is the goal since there is no cure yet. After that window, remission is much more elusive so...

Send questions, vent, we all understand the frustrations of having to change or even lose jobs because of this monster and we also understand the trials it can cause in relationships. YOU ARE NOT ALONE. We feel it too and will walk with you through your deepest, darkest valleys and up the steep hills, cliffs to any highs. We speak not usually from medical expertise (except what we read) but from our own personal experiences with the monster. And though we share the pains and losses, each individual has a unique disease, reacts to pain differently, to meds and treatments differently, has very different (and often difficult) doctors, has different support systems...It is not a text book disease.

More in a later email to answer your questions because as I often tend to do, I have gone on too long. Hugs to you and prayers that your pain will be lower tomorrow.

Rev.

Hi Jody,

Welcome to our group and know that we wish you never had a need for it. RSD/CRPS is very tough as you have come to know which is why this group has been very beneficial to me and others. I've found that there are people here with great information as well as people who care and are supportive and sometimes that support has helped me keep going.

Unfortunately my RSD also started in my left foot, so I know that we have had similar problems with getting around. Is yours in your left foot only? I hope it is. Mine has now spread to my right foot and is in my left leg. I'm lucky to not have any upper extremity pain, so far at least. What kind of injury did you have? Or injuries?

Rev has suggested that you get to a good pain doctor and I really agree. Treating this promptly can be your only hope, or best hope, of remission. How long ago did you first notice the symptoms? It seems that treatment by nerve blocks and physical therapy are the most effective early treatments. Have you had any lumbar sympathetic blocks? That's what they would try for a foot or feet.

It's sounds like you've been realizing how much your life has changed and it's been very hard. Mine happened in late 2006 and I was diagnosed in 2007, so it's been a while for me yet I still sometimes have trouble accepting how different my life is now. Next month I'm traveling to see my new grandson and making wheelchair reservations at the airports is a new thing recently that I've not wanted to accept.

It's been similar to the stages of grief for many of us with anger, and denial, and finally some acceptance.

Well, I do hope this group will help you. Please let us know if you have questions or things that you want to talk about. I do hope that the support of the group will be good for you like it has been for me.

gail

Hi Jody,

I have had CRPS for 10 years now. It started after a fusion in my neck at C4,5, and 6. The pain was in my neck, shoulder and down my left arm. It took 4 years for them to figure out that I had CRPS. Even tho they did not know I had it I went through physical training, many nerve blocks in my neck and tried many medications. Finally they sent me to one of the best pain specialist in Chicago and had a SCS put in. The wires slipped and had to have it done again. A SCS is a spinal cord stimulator. Any how I have had it removed because the 2nd one did not work either. I finally have a great doctor now and manage it through different meds. but it is know pretty much everywhere in my body even my stomach. This site is great for getting info and finding friends to talk to who understand your pain.

I wish you luck and a gentle hug, Cindy

Hi Gail,

It was only in the sole of my left foot at first but has now spread to my toes and my lower leg but its not past the knee...thank god. My original injury was planter fasciitis from a work injury, Ive now had 2 surgery's and numerous cortisone injections and extensive physio but nothing worked my first surgery was in 2007 but i was only diagnosed with CRPS in Janury this year.So not sure i have actually had it for as the pain seems very similar to what i was trying to explain to my doctors before the second surgery. I now have a pain specialist who is going to do a 5 day ketamine infusion in the next few weeks. Any thoughts on these? as i am very nervous about it as i do not react well to medications at all and cant take to many due to the side affects. im not sure what to expect from this treatment but im keeping an open mind. And yes i am finding it very hard to have to alter my life beacause of CRPS and at the moment i feel very helpless and have a lot of self loathing

Thank you for your kind thoughts i greatly appreciate finding this group and i hope i will one be able to give some comfort to someone also.

Jody

Hi Jody,

Welcome to this forum!

Everyone here will answer your questions with complete compassion for you and understanding for your pain and suffering!

I am relatively new here as well. The feeling of helplessness and hopelessness comes to me often. This horrible disease decides when I can do EVERYTHING!!!

I am glad that you have found this place of comfort and hope in my heart that one day.....someone will figure a cure.

My family has been very good with me, complaining all the time, telling them about my foot still hurting so bad...continuously....that I am tired of saying it. I try to suffer in silence now.....I bring all that pain here!!

Although I can try to be quiet and not complain ( I am afraid to alienate my family) it is painfully obvious that Grandma is not the same as she was. This I am afraid is the new me! I will continue to do the best I can do with this and continue to look for a remission, but I am afraid that my window of opportunity has passed.

My dad was a strong, strong man that would say to me:

You know Mary......I used to complain about my shoes until I met a man with no feet!!!

That brings tears to my eyes...but he was right!!

We have been dealt this crappy hand but I know that everyone of us can gather the strength to live our lives the best we can!!

Hope you have a low pain day!!

Gentle hugs too you!!!

Mary

Hi Jody,

There is a book written by a lady who had years of suffering with RSD and then got the ketamine infusions and is now in "remission" meaning that she is very much better but the pain does come back so she goes in for "booster" infusions. Anyway, it's called Remission Possible by Barby Ingle and she describes the process of having the infusions. If you want to know more about them, that might be a good source for you. The outcome sure sounds wonderful but does not work for everyone. Other than nerve blocks, though, which are usually only effective in the first few months of this disease, the ketamine infusions are just about our only good chance at this time of remission. So, it's scary somewhat but if I could afford it I would do it in a second. Also, there are very few doctors who are currently doing them, so in some ways it's remarkable that your doctor is one who does.

Ask others what they think about them. Some are not sure, I do know that. But, if our choice is to try something that might give us discomfort with weird side effects for a few days opposed to a certain life of severe pain, I don't find the decision a hard one. But, I don't know if there have been any long term side effects from ketamine infusions. I haven't read of any, but that doesn't mean there haven't been. I would love to know if others know about that, too. I keep asking my doctor about trying them, but the insurance companies right now are "iffy" about covering them which makes him say absolutely not. I'm hoping that will change in the next few years and one day give me a chance to try them.

Good luck with whatever you do!

gail

Post edited by: maddiesgram, at: 05/12/2012 08:09 PM

Hi Jody, It took them 4 years to figure out what was wrong with me. Just like you my pain pretty much felt the same way as before surgery accept with time the pain was getting worse. So you most deffinitely could have had CRPS all that time. Eventually most people find that they wind up getting it in other places. This disease has to do with your brain and nervous system (spinal cord) that leads down to the nerves that were orginally hurt. It is kind of like a light that wont shut off no matter what you do. Your brain sends messages to your nerves that it hurts and then your nerves send a message back that it really, really hurts and so on and so on. I like to call it the light or pain that can't be turned off and that is what CRPS is.

Many gentle hugs, Cindy

hi Jody, the people here are just so good to talk to and have a wealth of information to tell you I just hope that you get a doctor who will work with you and will listen to you when you tell him where it hurts but he cant see it.I came here to MD Junction by chance and I enjoy coming back again and again to talk to everyone. I've got CRPS in both arms up to my shoulders, left side of face and spreading, as well as left toe up to my knee.My biggest problem is that the people I work with sometimes forget about my CRPS and tap, grab or punch in the arm to say hello to get my attention. Keep thinking that you can beat this, don't let it get you down.

I felt so down when I was first told I had this. I went home and looked it up on the net and was just blown away from what I read.I am just up the road from you, I'm in Newcastle, New South Wales.

Hi Jody -

Let me add a belated welcome to our group - I just ran across this thread. In reading your couple of posts, I'm not clear on a couple of things that are important to know, if you don't mind. Am I right that the precipitating injury was in 2007? Is that when the RSD-type pain began, or was it only after the second surgery this year? Also, how was the CRPS definitively diagnosed? What other CRPS symptoms, other than the pain, are you experiencing?

These are important questions, because if your RSD began years ago but was just recently diagnosed, it changes things about your treatment. You also seem to be unsure about the CRPS diagnosis, so I'm glad you're seeking all the information you can find!

Regardless of what's happening to you, good luck, and welcome to the best online RSD support group I've ever seen!

Howard