Shocked
 

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. :Wave-Hello:

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 :hug:

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 :hug:

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.

Completely understand!!
 

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

Hi Emma,

It's nice to hear from a fellow Lidocaine proponent. I have been having my Infusions for 8 years for severe Neurological Hypersensitivity and pain from multiple accidents. As for Ketamine, I take it 4x daily in oral form between Infusion dates to supplement pain management. I take between 30 and 60mg per dose - as long as you stay under 100mg hallucinations are rarely a problem. Use, however, can lead to bladder problems - but I have other reasons for this anyway.

I wish you reduced-pain days,

Dave.

I had no idea that Ketamine comes in oral form! Is this an option with no infusions or not? Thank you.

Hi Spiritscript,
My PM Team does not do Ketamine Infusions and I am reasonably controlled with the Lidocaine Infusions every 4 weeks. The Oral Ketamine is a strong management boost for me as my symptoms and conditions are rather extreme.
Over here Ketamine is a Class C (soon to be Class B) drug due to abuse, so it has to be prescribed by a Consultant and dispensed from a Hospital.

Dave.

Thank you all for your responses. I'm still here, mostly listening ^.~

Infusions scare me, not sure why. I'll have to consider them though because I want my normal life back. I'm stuck with having to medicate the pain to a tolerable range and a strong desire to work as a nurse. These two things are exclusive of each other... Nursing and narcotics do not mix. I have tried several times to work only taking pain medication when not working and not sooner than 12 hrs prior to a shift... The up and downs of severe pain and some relief made me not such a good employee. I was always careful to give good and safe care to my patients but once out of the room.. I either had to rest in tears briefly before going to the next patient or push through and realize I was being overwhelmed by pain and thus causing irritability. Needless to say, after a few weeks.. It becomes obvious, something isn't ok with me. Then, because I'm struggling to do my best at dealing with the pain while providing patient care... And being ridiculed for " being slower " or for being teary during times when I can sit and chart... I had gotten quite defensive and angry... I couldn't understand that they couldn't see I was really pushing myself and doing what I thought was a great job providing safe care. It turned into a bad situation. I would push myself and work with the severe foot pain and barely make it to my car after a shift. A few times I just collapsed outside crying until I could get myself back up on my feet to take a few more steps. Every evening, sitting and crying in my car until I could get the pain under control long enough to drive myself home- only to hope to sleep a few hours and do it again the next day or two. This experience did/does not make me a good employee. I'm devastated by this as I had worked at this place for close to 10 yrs and never until this happened was I an undesirable employee. I'm truly emotionally devastated. I want nothing more than to be able to be pain free and un medicated so I can have my life back.

I am realizing I do not have a knowagable enough dr to treat this crps. He keeps saying, " usually this kind of thing burns itself out and goes away". Well it's been almost two years now, and it's only getting worse!

I'm so very frustrated. So far, the only effective treatment has been fairly strong narcotic pain Management. While it does keep the pain in a tolerable range, I can not figure out a job that I can do while keeping the pain controlled. Funny thing employers frown upon nursing employees needing narcotic pain management. Although, I'm not greatly affected cognitively ; I agree direct patient care isn't a good choice... I would never want to be a liabity to someone's health status. But, there must be a nursing position I can be hired for like Case mgt or chart review or I don't know... Something! It's so sad and scary thinking I may never be a nurse again. I know.. That's very negative but it is how I often feel. It's not something I want to explain during an interview as I hardly believe I'd be hired. I'm so very angry that I was hurt during my job and I will likely never be able to perform that same job again.... And I get treated like a degenerate for it. It makes me furious.

Ok... More forward progress stuff...I am starting an aqua low impact exercise and yoga class soon, so I can hopefully make some positive progress. I read many people do pool exercising, so thought I'd give it a try. I'm procrastinating on acupuncture and therapy hoping the wc insurance might approve it. Money is getting pretty tight and I just don't have much extra Atm.

Anyhow, thought I'd check in and let you all know I appriciate you being here =)

Velkyn,

The sadness, anger and frustration of having your life yanked away from you can be truly overwhelming. Not to mention the pain! It is a lot to deal with. Anxiety, irritability and depression go hand in hand with chronic pain and illness. Get support if you can. If WC won't pay for a therapist experienced in these matters then get what help there is at a local church, community agency or EAP. Be kind to yourself during this time. It is all too easy to get into self-recriminations about what might have been done differently so life could be the same. This is not helpful. Channel all your energy into getting better in every way you can with the best self-care, diet and gentle exercise you can manage.

The pool and yoga is a great place to start moving forward! Yeah you! They will be good for both physical and mental health. It is so important to feel that you are doing something to help yourself heal.

It sounds like time to find a new doctor if you can. Even with WC restrictions it may be worth a couple out of pocket visits to someone more knowledgeable if it doesn't interfere with your case. In addition to PM either neuro or Physical Medicine may be of help.

Infusions are certainly worth a look. I find it a little worrisome that narcotics are all that's working for you. Have you tried any TCAs or neurontin, lyrica type meds? Sorry if you addressed this already. Topicals can take the edge off as well, even plain old OTC lidocaine or Epsom salts.

Don't give up hope. There will be something you can do when the time comes. Direct patient care is too physically demanding, maybe sometime in the future but not now. Keep your stress down and only look at opportunities that are low impact. No ER work for you. There are desk and phone type jobs out there. If finances dictate do some PRN, otherwise focus on getting your health and well-being as optimal as you can. You are worth it.

Sending Healing Love,
Littlepaw :hug:

I have tried lyrica and cymbalta, both with undesirable side effects. Neither helped with pain but perhaps two weeks was not long enough for that benefit. Lyrica was really a bad experience for me. After about two days, I realized I was having memory loss, especially with words. I couldn't think of words to form complete sentences... I was really foggy feeling and cognitively deficient. The lyrica experience was especially scary for me. I think I have some residual word issues because of it as well. The cymbalta caused extreme depression, sleep issues, agitation and feeling floaty / not present. All my life, I have been pretty sensitive to the medications that alter or interrupt neuro chemical synapses kinda things... Like ADs, neurotinin, chantix, tramadol etc. At this point, those types of medicines are off the table for me.

I do use lidocaine patches which do help some with sensitivity and skin associated sensation but does nothing for the deep burning or buzzing. I have never been offered the compounding creams some of you use. I'd never heard of them until reading here.

I'm wondering if a tens unit might provide some relief or even periods of confusing or distracting the nerves in my foot. I'm going to ask the dr about that.

I have a bone stimulator because it took my fracture 16 weeks to heal. I've been using it for ultra sound at night when the pain is really bad. I don't know if it helps but it does distract my brain...and let's me feel like I'm able to do something that may help. ( besides heat and hard pressure/ the pain decreases substantially if I can keep it really warm and keep hard pressure on the area - I use a semi soft cat toy ball with an ace wrap and gel toe spacers because my toes feel so tight and webbed)

The ortho and psyiologist want to place a spinal stimator but the dr doesn't want to place it until I say I do not plan on pregnancy or another necessary abdominal surgery. The risk of damage from dislodging the leads is of concern, apparently.

I have been seeing an ortho, a neuro, and psyiologist for about two years. I have 2 herniated discs in my neck, so I've seen the neuro for the last seven years including as a PM. After reading about some of the treatments on here that work for some people, I'm wondering why no one has discussed any of these with me. The only answers are, " usually this kind of thing just goes away after awhile".

That's a good idea about low cost counseling except my income was an issue a few weeks ago when i spoke to one place and kinda got discouraged by that. I've been hoping that it could get approved but I'm frustrated waiting. The place I went was 125$ an hour... Way beyond my budget. I've looked at a few other options and I need to call. It's been quite easy to procrastinate on after the experience a few weeks ago. I do have insurance but the therapist said as soon as RSD appeared on her notes... The claim would likely be denied and so she would request I pay up front and process any insurance claims myself. It was a weird experience and I was a bit turned off of the whole thereapy thing for awhile.

I did look up some other therepy options over the weekend and I'll call soon.

Velkyn,

One of my doctors expressed a preference of neurontin over lyrica because the lack of loading time made the side effects present a little differently. Still I was one of those who got depressed on it. Nortriptyline at a low dose has helped with the burning/buzzing. 25mg made me dizzy but I tolerate anything under 20. I am pretty small and also sensitive.

TENS seem to be used by some. I will sometimes use mine more like an SCS placing one set of pads on either side of L4-5 and another at the base of my skull.

Just got a new compound cream Ketoprofen 10%, Ketamine 4, Gabapentin 6. It is my favorite so far! These percentages stay creamy and absorb well. Pharmacy put in just a dab of DMSO to help absorption.

Many cities have agencies with free or sliding scale counseling. Your local United Way should have a list. Strange to me that the therapist you saw was weird about filing. Of course A medical diagnosis like RSD won't work, neither would diabetes. For insurance to pay you have to be assigned an Axis I disorder. However this can usually be an Adjustment Disorder (due to illness, injury) instead of something stronger like Major Depression. Sounds like they didn't want to do paperwork or weren't comfortable giving provisional diagnoses.
Keep looking. I think this was a fluke. There are caring competent therapists out there.

If you are comfortable with your docs and don't want to switch I would just go armed with info and things you want to try. I had to ask my neuro for my topical, I even specified trying the specific combo and he said sure.
Keep at 'EM Velkyn. We all have to. No one is more invested in the patient's recovery than the patient! :grouphug:

Sending Healing Love, Littlepaw

wow, i its amazing how much I can relate to this. I am in college and had to drop out because of it, and I am having a hard time accepting it. I enrolled in classes for next semester, even though I know it will be a challenge, if possible. I am so angry as well, and depressed. It is most frustrating to me that people don't understand, and that no one can help me. people just tell me to learn to live with the pain because its my new reality, but its so hard to do that, its just not that easy. I feel weak, and like i am not strong enough. I am new to this group, and want to talk to people who can relate, but it also scares me when I hear what seem like horror stories which could be my future.

It takes an incredible amount of strength, resilience and courage to live with pain day in, day out. People who don't get that have never had to deal with pain that does not go away. Yes, they may have had pain but not the kind of stress of an ongoing condition and the life changes that come with what we all deal with. Let their misunderstanding roll off of you. They really don't have a clue.

Therapists experienced in chronic pain and illness are tremendously helpful in dealing with the aftermath. I found a great therapist on the Psychology Today database online. She was Instrumental in helping me deal with this crap. ;). Don't get discouraged by what is on the forum. There are mild cases and cases that have improvement. Those people are probably not posting! Your future is not yet determined...don't project the worst onto it.

Hi Taylor,

While you are dealing with all of this, please do not ignore the symptoms of Depression - how it can spiral out of control if left untreated - and how it affects physical pain. Littlepaw is right, as usual, in pointing you towards specialist Therapists, but I cannot stress strongly enough that Depression rarely disappears on it's own.

What you will find in addition all over these Forums is wonderful advice and plenty of support. Here's to a rapid improvement.

Dave.

Dave,
I was already diagnosed with depression before I was diagnosed with RSD, and had been taking prozac for almost a year. It worked great for me. However i feel i may need to up the dose now that I have this new disease. I have been looking for a psychiatrist, but have been unable to find one. I have a hard time believing that talking will help me.

Therapists use many different modalities. I also felt talking wouldn't help me. I could talk circles around this all day and not really process it. My therapist was certified in EMDR (eye movement desensitization reprocessing) and hypnosis. Her certifications were listed in her Psychology Today profile. The EMDR was amazing, really helpful with moving through the trauma of repeat surgeries, life change and constant pain, as well as 'unsticking' some unhealthy belief patterns I picked up ie: I'm a burden or for you - I am weak.
Both these modalities bypass cognition and sneak in at a different level. Very effective. Hypnosis was good for maintaining calm in the storm. I had felt very depressed and anxious, this lifted pretty quickly with help.

Get support if you feel inclined to at all. There's no reason to go through this alone if you can avoid it! :grouphug:

I've felt all of this
 

This. All of this. I have powerfully felt all of these things. I am so very sorry you are going through this. You are not alone. There may be a way to get back pieces of your old self or to come to terms with a new self. I see both an acupuncturist and a therapist and it has really helped me cope. I appauld you for seeking out those resources. There are acupuncturists who help you work through the emotional as well as the physical - mine does. Where I get therapy, they also have peer support. It has been wonderful to have someone to talk to who isn't a friend and isn't a therapist. Maybe you can see if there is something like that for you where you are. Or a group might be helpful. I am doing art therapy and while it has it's ups and downs, it's helped me work on things I've had a hard time voicing or even understanding. I've also begun doing restorative yoga (you lie in poses for 20 minutes - entirely non-weight bearing) and it was the first thing besides medication that moved the pain down a notch for me. Therapeutic yoga is also a nice option - it's essentially stretching. Really any stretching helps, even though it can hurt in the moment. Meditation and mindfulness have really helped me live more in the present and not think about the past or worry about the future. That may be of interest at some point.

I do hope you find support. You are always welcome to PM me. I, like so many others here, understand the struggles of dealing with this condition. Thank you so much for reaching out and sharing your journey with us. :hug:

Hello
 

Hello Everyone,
This is my first post. The first real almost diagnosis of me having CRPS was just last Friday at a (new) rheumatoligist's. I am not even certain that I have it. But after reading some of these boards, and especially the "shocked" thread, it is just hitting me that others also have these odd compilations of symptoms. I'll give a brief background, but want to ask others this:do you experience episodes of flare ups and remissions? I feel a lot better today than I did three days ago. Some days, I am on my side in bed writhing in pain, and today, (with moderate pain) I went out to dinner with hubbie. Is this what you also experience?
For some background, I have been an avid mid-distance runner all my life. About three years ago, I had to stop running from the feet pain. Two years ago, I had to stop walking from the pain in my feet. I went to my PCP and started Vicodin. It helped, but I still could not go for an exercise walk. I was referred to a pain specialist and a rheumatologist. I have finally settled on a pain guy and just found a new rheumy who seems knowledgeable. Now, about two years later, after many bone scans, MRI's, x-Rays, and blood tests, my rheumy (who I just saw once and see again next Friday) has suggested I may have CRPS. I have a lot of bone issues that appear in the scans, but he seemed to think I have CRPS. It may have been because I asked him enthusiastically to be very careful when examining my feet. I was at about a 9 pain level when I hobbled into his office to see him because my pain medication was done working and i was late in taking my regular dose. He is running some blood tests for Lyme, Lupus, and other little delights, but he clearly thinks I have CRPS. He told me to sign up for Ketamine therapy asap and to look into Calmare. He said he had just seen a woman with my similar situation, but using a walker. He said she had the most substantial turn-around of her situation he had ever seen. He said last time he saw her, she was pain free and walking fine. At that point, I did not know what CRPS was. But since looking it up, I started to do as the doc suggested. I am signed up for the first available Ketonine therapy (May 2016) and had scheduled for the Rutherford NJ Calmare therapy place. But after getting my first in a three part series of neuroma injections into my feet Wednesday, I am scheduled to meet with my podiatrist to get these neuromas surgically removed - permanently. I have read that any gains in relief for CRPS can be set back from procedures, so I am re-scheduling my Calmare for after surgery.
Ok. So that's my story. Geeze, sounds like a book! Well, I will keep everyone posted on how things go with getting the nerves out of my feet removed. It's just a consult with the surgeon Monday. But if all is well, I am going to go for it. I'd rather be numb on my toes than feel like I am walking with knives through my feet. Numb sounds nice. Has anyone else had their foot nerves surgically removed?
Thank you for reading my story. I hope each of you reading this has a restful night, without pain, and wakes to a happy, pain-free morning.
: )
~ Morgan

Welcome Morgan,

I am so sorry for what you are going through. I was a three mile a day kinda gal before my foot issues. It is so hard to lose the use of your feet. Before you have surgery on the nerves in your feet I have important questions. Is your podiatrist trained in how to work on nerves? Did they do a fellowship of some kind specifically for this? Are they a member of the Association of Extremity Nerve Surgeons?

The reason I ask is some people get worse with neuroma surgery. The technique can make a huge difference in whether you develop a true stump neuroma afterwards (you can anyway) which will be just as painful. Nerves must be handled in certain ways surgically for optimal outcome and to prevent or minimize new axon development. I have had nerve surgery and know well that sometimes it is necessary, but having the right practitioner makes a difference. There is much debate over Morton's "neuromas" and how best to treat them. A second opinion is always an option if you are unsure.

On surgery, 500mg Vit C a day is current ortho recommendation for CRPS prevention, 900mg neurontin pre-op helps prevent chronic pain, and the antibiotic minocycline attenuates glia to help avert chronic if used after surgery for a week. I Just posted some links in a response to the NEW to CRPS Ten year old thread. There is one of Dr. Pradeep Chopra. Lots of good info in there. Sorry I just got up and don't have the link in front of me...

Sending Healing Love, Littlepaw :hug:

Hi Littlepaw, thank you for the insight into treating the neuromas. I'll have to ask about that and I see this doc Monday.
Have you had any neuromas removed? I heard they can grow back, but I have not heard that they get worse. I guess with any surgery, it is the surgeon who is the most important factor, as you said.
I'm sorry to hear that you used to be a runner too. I feel like a dog looking out the window at a big lawn, but not allowed to go play on it when I see a nice trail for running. Have you found any substitute for it? I have an elliptical, but it is still too much for my feet. I will surely try again. And then again. Have you found anything that can be as good a cv workout without using feet?
I am still not believing this is what the issue is, being that there are so many issues found in the scans. But my foot pain may be exceeding what is normal for what they found in them. At what point do you know for sure that CRPS is what the issue is? Pain is so subjective. If you were a runner, you must have also had a very high pain tolerance. At what point did you know it was a pain disorder? I guess I just can't believe this.
Thank you for your insights!
To the 2 nurses, I feel for you! One of my very close friends is a nurse and is having some psych issues. She said that there is such a stigma associated with "those" patients that she is afraid that someone may find out at work. It is such a challenging career that being in pain through a shift is overwhelming. I hope you can find a type of nursing that does not require all the hard physical work that is normally demanded of you.
Have a nice Friday everyone. : )

Hi Morgan,

The trick with Morton's neuroma is that it is not really a neuroma but a fibrous thickening in response to compression. Cutting the nerve to remove them can cause a true neuroma to form in response to the injury. This can happen even with the best technique. The following link gives info on both so you can see what the potential is. It is from Washington Univeristy which has probably the best nerve program in the US.

http://nerve.wustl.edu/nd_neuroma.ph...erve_disorders

The potential to grow a true neuroma from the nerve trying to heal itself by sending out new axons is one of the reasons to avoid a cut-out procedure, that and you lose the fine innervation further down. Some surgeons treat this as a nerve decompression and release ligamentous restrictions on the area. Steroid Injections can shrink the morton's neuroma and atrophy some of the fibrous problem. Ultrasound guidance will give the best results. Phenol and other neurotoxic injections can cause other problems.

I would not give up on a treatable cause contributing to your pain syndrome. It sounds like you have reasons for your pain that can and should be addressed. You could have developed CRPS in response to the problems and it could improve with treatment of underlying pain contributors. Or it could stick around, Impossible to say. But CRPS is a diagnosis of exclusion. I think you have to treat what you can and see what remains. I appeared early on in my journey to have CRPs but it was a nerve entrapment and nerve injury resulting from an orthopedic surgery. I had a neuroma-in-continuity resulting from retractor damage that had to be resected. I was much better afterwards. My CRPS came after another procedure I sadly needed further down on the same foot some months later. Nerves had just been through too much. That was why it easy to tell for me. Symptoms were prety clear month out from my last procedure.

I spend a lot of time on the bike at the gym and a LOT of time in the pool. Aqua work is the best. There is also an elliptical called an Arctrainer which gives legwork but less ankle stress. I am so hapy to be off crutches and now walking a mile, I try not to stress about what I used to do. 8 miles of hardcore high incline/decline without blinking. Hiking was my real thing. Ah well, we have to adapt.

If you don't like what your podiatrist says get another opinion. Foot and ankle orthopedics is good. Physcial MEdicine, Rehabilitation guys sometimes do a lot of foot stuff. I see one who does running medicine, knows about Morton's. does ultrasound injections etc. Finish your shots before surgery, unless they're phenol...

You can find nerve savvy podiatrists herehttp://aens.us
Good luck and keep us posted.
Sending Healing Love, Littlepaw :hug:

Hi Littlepaw,
Thank you for the exercise ideas. The heated pool is always a great feeling thing, isn't it? I'm sorry you've been through so many surgeries. You must be so happy to not be using crutches anymore. I think it's great that you are walking a mile a day! It may not be the "crazy hike" thing you used to do ; ). But it is a lot to do on hurting feet.
Thank you for the neurosurgeon link. I think I just about passed out from the pics they have posted on their home page though! Sheesh! My foot doc is definitely not on there. I am just giving this podiatrist a second chance. The first visit, he just said, " I looked at your tests and I don't know". He barely even examined my feet! But the doc who does my ultrasound neuroma steroid injections said to try him again. She was incredulous that he was so dismissive as she believes he is the best. He seems like a clown to me. But he has a last chance Monday and hubby will be there. Sometimes, I find it helps to have a line-backer looking fellow with me ahem, "encouraging" the doc to do his best.
; ). I guess having dismissive docs who downplay the severity of the pain is common. Having someone there to testify to the disabling effects of the pain seems to help. Have you heard of this with other people or experienced it yourself?
I have to schedule the second in the 3-part series of foot injections. The first set have already decreased the pain to about a 7 and it was just Wednesday that I had them. They don't seem to be shrinking permanently, but seem to come back 4 months later with a vengeance. I am thinking of the permanent surgery because the pain of getting them done is intolerable. Spine injections, I don't even flinch. But these neuromas a whole different animal. Do you have ideas for other options to get rid of the neuroma pain (or Morton's non-neuroma)? I am fine with surgery that leaves me with no feeling in my toes. Any ideas would be great since you clearly have more knowledge that this clown, I mean, podiatrist, who I see Monday. If he has no idea again Monday, he gets fired. Ohhh! I'm feeling like Donald Trump! : )
Although I'm not running a mile today, i AM going to the rabbit shelter where I volunteer to help with today's fundraiser.
Thank you for telling me that you are active and still run. You have really helped to inspire me and to give me hope that I will do that again too. I really appreciate your support and sharing of your knowledge. You are a great help!
I hope you have a great day and a great run. It is beautiful here in PA and I hope you are also having fabulous spring weather!

hi Morgan,

Thanks for the kind words. I am staying active. I hope I didn't misrepresent though, I don't run anymore, my peripheral nerve and ortho surgeons don't want me to. I am trying to increase my walk length though. I am getting out for short hikes now, easy to do in the Austin area with all the hills and creeks here. I have recently been able to get down to the cove where my gym keeps its kayaks. They are on an old quarry lake and have SUP, too. Very cool and restorative to get out on the water again!

I am so glad your injections are US guided. I would hold off scheduling anything surgical until 30-45 days after the last set. The results may very well be cumulative. It is very important at this point that you offload that neuroma as much as possible to keep the nerve from getting irritated and swelling up again. You need a big toebox and possibly to do a cutout in your insert to take pressure off the area. Enna just told me about these cool running shoes called Altra which have an anatomical toebox. They hit the 150 price point retail but 6.pm.com had them way, way cheaper. I would also recommend trying some ttime out of shoes with a toe spreader to give some space in between your digits. See if that makes any difference.

I think it's always good to have backup during appointments. Getting your honey's take on the guy is good too. Go armed with questions about what exactly he plans to do and what the expected outcome is, chance of success and failure, how many of these he does a year, etc. Both feet at once, one at a time. Does he go from the top, cut the ligament, cut the nerve, what? Are there inherent biomechanics he thinks caused this and will it just come back?
You can never ask too many questions if you are trying to decide on a surgery or a surgeon! Trust your gut. You don't have to like the doctor but you do need to feel confident in him.

Do let us know what happens. I am rooting for you. determination and grit will get you through this. I am praying that your shots will make a difference and get you back to your life.

Have a beautiful weekend. I am sending Healing Love, Littlepaw :hug:

Hi Littlepaw,
Did you say kayak? Ohhhh! That sounds wonderful! What a great way to get your feet somewhat elevated and still get that awesome workout! Can I please join your gym? 😜. We do not have gyms here that offer that, but do have canoeing and kayaking on the Brandywine River here. How is hiking for you? Is it painful with each step? Or do you have it managed such that you feel it after the exercise? I want so much to be walking or hiking, but each step is an exercise in pain. If it is like that for you? How do you work through that?
Thank you for the link to the sneaker site. I am fine spending the money on shoes that will allow me to walk without pain, or at least reduce it. Are the sneakers you refer to the ones that look like each to is separate? I'm also not sure what a toe spreader is. I have my shoes so big so that there is a lot of room in the toe box. Any pressure on the foot causes pain. I have an extraordinarily high arch in my feet so that I am prone to issues if I don't get enough arch support. So it may be that I am predisposed to foot issues.
Do you or did you have neuromas too? You had surgery on your feet. Would you do that again, being that hind sight is 20/20? It had to be tough to be in crutches and stay off them after surgery. Did you actually do that? I am having trouble staying off mine. I always want to do stuff!
Thank you for your ideas on what to ask the doc tomorrow. I hope he has better insight this time.
I hope you are out and about, maybe on the water if you have good weather. I'll pretend I'm kayaking. : ). Have a great day, and I am saying prayers for your healing because miracles DO happen! : )

hi Morgan,

I will send you a PM in the next day or so on most of this stuff, that way we can let Velkyn have this thread back, cuz we are :Off-Topic:

Thanks Velkyn :)

but for the record since I think addressing the pushing through pain question is important to address...

I was on crutches nine months total out of 18 including all three surgeries and the initial non weight bearing before the first op. No choice, I wanted to get better. I have a two story house and developed super upper body strength lifting up on triceps to get upstairs! I followed doctors instructions religiously. I did NOT push through pain and still don't. I figured the pain was telling me my limits. I believe I would've really screwed things up if I had hurried things along. Going slow, following recs and obtaining patience I never had before all helped me have the ability to heal as much as I have. Focus on the long term goal, mobility for as much of your life as possible. Don't be stubborn on the small right-now stuff, make sacrifices when needed to get there! ;)