Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-12-2015, 06:42 AM #11
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Originally Posted by CRPSsongbird View Post
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
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.
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Old 04-17-2015, 04:13 PM #12
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Originally Posted by EnglishDave View Post
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.
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Old 04-17-2015, 05:06 PM #13
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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.
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Old 04-22-2015, 05:47 PM #14
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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 =)
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Old 04-22-2015, 09:03 PM #15
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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
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Old 04-22-2015, 10:55 PM #16
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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.
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Old 04-23-2015, 08:01 AM #17
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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!

Sending Healing Love, Littlepaw
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Old 04-26-2015, 02:19 PM #18
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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 =(
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.
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Old 04-26-2015, 03:16 PM #19
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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.
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Old 04-26-2015, 04:36 PM #20
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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.
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