Hi. I have had RSD in my foot for about 1.5 years, it is progressing. My dr recommended me searching for a group so I might not feel so angry and alone. So here I am.

I'm shocked! I had no idea other people really experienced the same things I do. I have been going through this all alone just trying to find things that help. It's been quite clear what hurts.. But can be elusive to find things that help. I'm stunned to read other people have issues with socks and shoes and cold! I try and keep hoping to find something fashionable to wear that I can tolerate more than 30 min! It's very frustrating to only be able to wear no socks/shoes or the one type of ryka tennis shoes that work and only thin socks with no texture inside! Omg, I thought I must be crazy!

My dr diagnosed me after a mom healing fracture and is very supportive but after failed nerve blocks and only minor relief from medications.. And a suggestion of neuro st
Placement... He just doesn't have a lot of answers. He has hoped this pain would burn off over time... It hasn't yet. I'm exhausted and furious that My life is so effected. I am not able to get out much other than drs appts and high medication doses to walk any length of time. I've spent the better part of the last two years physically in bed, hopeless.

I thought the other painful symptoms I've been having are just related to atrophy but he and I discussed today that it is most likely progression of the RSD. I'm angry and terrified of living this way or getting even worse.

I've decided to try acupuncture and even start seeing a therapist who specializes in chronic pain. I'm not happy about any of this. I feel ashamed, guilty and pathetic because I can't understand why I can't just suck it up and push through and continue to be the major financial contributor I had been. I'm so very angry and ashamed. I feel weak and worthless.

I hope finally connecting with other people who have this miserable condition will help me learn and find effective coping strategies. I don't want to live this way! I want my life back =(

Welcome velkyn.

Welcome Velkyn,

We all understand wanting the old way of life back. And if one of us could just suck it up, push harder and make this go away we certainly would! CRPS just doesn't work that way, no shame there. You are not weak or worthless or alone. Living with this illness requires determination and grit and the support of people who understand when you need to come vent and get encouragement. I am so very glad that your doctor had the wisdom to point you in our direction. I am also glad that you are going to go to a pain therapist and try acupuncture. I have found both very helpful. Not everyone tolerates acupuncture but I find it helps me a lot. Working with a therapist who understood pain, chronic illness and the loss that goes with it made a big difference in my ability to cope and move past a lot of negative feelings. You will progress and find it easier to deal with.

It saddens me to hear that you have had so much time stuck in bed. For me, getting out as much as possible makes a big difference in my mental health, even if it is just outside in the backyard where I have several bird feeders and two small self-contained fountains. There is always joy and activity out there and I find it brings me solace just to sit out there on my worst days. Getting as much exercise as I can safely do helps a lot too. It maintains strength and flexibility as much as possible and I think is part of why I have so far not developed some of the bone issues seen with CRPS. I spent many months on crutches so for a long time exercise meant getting in the pool at the gym. When I couldn't kick yet I just swished around in there with a buoyancy belt. It sure helped stave off a lot of aches and pains. Do what you can and give yourself credit for those things. If it's only five minutes on an exercise bike or even just a few PT exercises at home they are imperative for mind and body. If you haven't checked Vit B and D levels, please do. Vit D is good for chronic pain and nerve health and it is often low. My neuro checked it, insisted actually despite my thinking it would be okay with a multivitamin and Texas sunshine. I was wrong, gonna supplement for life now.

Come check in sometimes and maybe join our "one sock club". Forgive yourself for not being able to do what you used to. Never give up and keep fighting, just not so hard that it hurts!

Take care and be kind to yourself. I am sending Healing Love,
Littlepaw

Hi Velkyn,
You certainly have all the physical and mental symptoms a sufferer of Chronic Pain can find themselves beset with.

Yet you are still strong enough to work with your Dr to make changes. You are now doing a lot of the things you need to do to set your life on a new, even keel. Depression is a severe problem with a lot of us here so I am pleased you are moving forward to see a Therapist. Of course, there are plenty of places around the Forums as well, where you can vent or go for support of all kinds. We are not Therapists, we are your peers. Who better to understand?

Your Dr did a good thing by pointing you in this direction. In a few short months this Forum and it's members has changed my life immeasurably for the better. Take Littlepaw's advice and make yourself at home.

Dave.

Thank you all for your response.

I know I am fortunate at this time to not have the skin issues associated with crps. I only get a pin point rash looking area over my previous fracture area. I do have sensitivity to light touch and texture on my foot and leg. I developed severe back pain on that side as well. I have to use the lidoderm patches to sleep or if I know I'll be out and walking for over an hour. I am medicated. I use a cheery pit filled hot pack almost always or a heating pad. I have cold RSD, not true sweating... Just ice cold and deep burning pain with intense buzzing and rain drop sensations or crawling sensations. It is very hard to explain to anyone who doesn't understand. It's so painful most of the time and I have a difficult time weight bearing.

I had never heard of this condition and my explanation of my experience is purely organic at this time, so I may not have all the words to explain my experience. I do the best I can.

The shoe issue seems so petty until I find myself wearing tennis shoes with dresses or dress clothes. As small as it seems, it is highly embarrassing. Socks are a big deal, never considered them as important before... But there are few socks I can tolerate. I live in a cold wet environment and although I had always dreamed of living in New England or Alaska... That is clearly no longer possible. I drove myself 1500 miles recently just to have some warm time for my foot. It was exhausting but very worth it. It was the longest and first time I've left my immediate area in atleast 15 years. The cold intensifies the pain expotentionally. I have tried 3 times to return to work, floor nursing... But it is impossible to go 12 hrs without pain relief and standing and walking 12 hrs... Is at this point but a dream. I grieve for my former life everyday. I'm so sad. It is a deep seated sadness that brings me to tears just thinking of my old life and knowing I will never be that person again.

Anyhow, thank you all for taking the time to respond. I really had no idea other people have similar experiences. I didn't rush to the Internet when I was told I had RSD.. Because I just couldn't accept it and tried to pretend it wasn't happening to me. I am still unsure if reaching out is the right thing... But I realize ignoring the facts has not made my pain go away and being isolated from the condition ... Has only made me more angry, confused and more depressed.

I've never gone to any kind of thereapy and I'm really nervous about it. For me, as a nurse... This whole process of the whole condition evokes deep stigmas which maker feel weak and pathetic. Now.... I'm one of " those" patients... Who cry all the time and take pain meds daily... One of " those" patients. It's been extremely devastating.

I fractured my foot trying to save my patient.....It has cost me greatly. It has left me removed and abandoned from every normal thing I knew in my world. Devastating.

Hope you all had a pleasant day. I did spend a couple hours with my family, but had to get home to rest and warm my foot. I'll be down a couple days. But I know it's important to spend a little time with my family. I am missing out on so much... Especially the last months of my grandmothers time and that saddens me greatly. No one realizes how quickly life can change until it does.

Also, you are right about vit D. Mine was 16 when it was checked and I'm now supplementing.

Hi Velkyn,

No need to be nervous about starting therapy. You are looking at solutions focused work that is largely dealing with present feelings and gaining coping skills. Be sure you "click" with your therapist. Rapport is important, the relationship is part of what is healing. If you aren't feelin' the love or that the therapist gets you then perhaps try someone else. It is common to have a trial initial session. I was lucky to find someone right off who was a good fit for me and we got straight to work. I only wish I had gone sooner.

You may get back to your work at some point but it may look different than it does now. There are so many opportunities for nurses off the floor with utilization review, case management, phone triage, home health and the like. Perhaps you will do something new you wouldn't have imagined before.

Aside from a few with deep pathology, almost no one gets secondary gain from being one of "those" patients. Nobody gets up one day and says "You know what, I think I'm gonna be a chronic pain patient!" This isn't what people aspire to in life. Most in healthcare know this but perhaps forget it sometimes. Yes there are people out there who abuse the system. Yes there are drug seekers. Is that most people? No!

Give yourself permission to be hurting, to need help, to be vulnerable. That's where you are right now. You went into nursing to help others in need. There are others out there who will now help you. Let them. It's what they do.

Keep getting out as much as you can! It DOES make a difference.
I am sending more Healing Love,
Littlepaw

Hi Velkyn,
Once again the lovely Littlepaw has saved my eyes by stating all I would. I MUST, though, address the importance of help for Depression. There may be a stigma attached, but there shouldn't be, Depression leads to a worsening of physical symptoms and rarely goes away untreated.

It feeds on one's pain and itself, leading to an ever deepening spiral. It is far better - and easier - to treat before it gets out of hand. It is not a sign of weakness, it is a natural reaction to the difficult life-blow you have to cope with. Accepting help, from Therapy or even ADs if needed will be as important as treatment for your physical issues.

You have already found your shoe and sock issues to be important - others here have the same sort of everyday problems we come here to discuss… and we generally discuss in an organic way as we are peers, not professionals.

Dave.

My Crps started in my left arm only from nerve injuries from an IV. Last summer it progress to both feet and legs unfortunately. I couldn't wear heels or my normal shoes for the longest time because of swelling and intolerance to anything touching them. After I had my first Lidocaine Infusion I was FINALLY able to wear shoes again , however I have to wear them a half a size to full size larger because I do still have some swelling and I can still no longer wear heels. So I have started buying larger but still fashionable flats. Whether its boots or any other type of flats, and I had to find very supportive and not snug or close fitting sneakers. But still it's a definite step up from not being able to tolerate shoes for long or if at all.

Something you'll also need to be EXTREMELY aware of is walking barefoot!! Due to the odd nature of numbness aspects of crps, it can be dangerous to walk barefoot. Last October I had unknowingly stepped on a very small piece of glass and it was in bedded in my foot. It was in there for so long that it caused infection and extreme exacerbation of my CRPS symptoms. If I had not realized it when I finally did, it very quickly could've turned into a severe infection possibly turning septic. Even though I caught it when I did it still exacerbated my symptoms so much that I was barely able to walk at all. And it exacerbated all my other symptoms throughout my body and I ended up getting new symptoms including CRPS in my face mouth and throat which is very rare. All because of a centimeter size piece of glass in my foot!!! So please exercise extreme caution when you're walking barefoot. I wouldn't want you to experience anything of what I went through last October simply from not knowing you would step done something.

Ask your doctor about a lidocaine infusion . It can really really help with the severe sensitivity deep bone aching and swelling issues caused by CRPS. If you have severe edema or swelling in your foot or feet ask about a ketamine infusion which is the same process with a different medication. Ketamine helps a lot more with the severe edema cases. And also helps with all the same symptoms that lidocaine can. However the side effects from ketamine are much worse than lidocaine. Lidocaine can cause severe drowsiness been kind of out of it wooziness and being unsteady on your feet. Ketamine causes severe hallucinations the entire time you're on it however it stops is soon as your infusion is done. Personally I'm hoping that I can stick with the lidocaine infusions because I don't really look forward to having severe hallucinations. But either procedure I think you would benefit greatly from and that it could hopefully help you be able to tolerate wearing shoes again. Of course with CRPS as always every patient reacts different to each medication or procedure so what works well for me might not work for you but you should have a very good chance of it actually working for you.

I hope you'll be able to find some relief soon, and find away to tolerate wearing shoes again! Since I have had a long and illustrious affair with shoes and boots my entire adult life I can definitely empathize with not being able to wear them!!

Wishing relief and warm hugs!
Emma

Velkyn,

I just wanted to chime in with support from another nurse. I'm an NP, injured on the job almost three years ago (trying to save a baby). I will never be able to return to my job as a nurse-midwife that I loved and was a part of my identity. I've gone through (and am still going through) all of those feelings you express- guilt, anger, the need to return to work as the primary bread winner.

Oh, and I live in New England, just outside of Boston which has had it's worst winter in a century. The cold is very hard for me to tolerate. Plus I can't wear anything but short sleeves. It's so fun to walk around in a t-shirt when it's 12 degrees out and there's six feet of snow on the ground. Simple things like the ability to wear a long sleeved shirt or a jacket in the winter have been taken away from me.

I understand everything you are saying about being one of "those" patients. It is just who we are now, and I hope I can be forgiven if, as a nurse, I ever misjudged one of "those" patients.

Please don't be afraid of starting therapy. Also don't be afraid to switch therapists until you find the right one. I wish I had done it much sooner (but of course workman's comp wouldn't cover it- but WC is a WHOLE other monster).

I really just wanted to give you support from one nurse to another.
Gigi