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 04-17-2013, 03:45 AM #1
Brambledog Brambledog is offline
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My Mood: CRPS pain in toes/feet , practical advice and help? Thanks :(
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Unhappy CRPS pain in toes/feet , practical advice and help? Thanks :(

My toes are on fire, the pain has really ramped up in the last week or so goodness knows why, I didn't even have it this bad in my knee (where it started), and I'm struggling to cope right now. I can't sleep properly, and it's frightening me to be honest, because I thought I was coping ok with it in my knee, but that was never like this.

Do my toes feel worse because they're smaller? My knee pain is predominantly a deep bone type of pain, and only really burns when the skin flares into that bright red we all love My toes are burning all the time, and at times it erupts into a period of stabbing pain that makes me sob.

I've got lidocaine patches and they seem to help a bit, but I have the eternal dilemma of when best to use them. If I have it on during the day then I take it off and can't sleep because the terrible pain comes back, if I put it on for night time I only have a couple of hours with it in the morning before I've got to go cold turkey all day, which is horrible. My pain doc was strict about 12hrs on and 12 hrs off.

I am really struggling with socks and shoes. I can't have my feet exposed to the air because thats so much worse, but even the softest socks aggravate and are uncomfortable. Shoes are a nightmare, I've got some ski boots I've been wearing this winter, but I can't wear them much longer now spring is here. I'm trying to keep my feet an even temp, I used to put them on a cool surface when they burnt, but I'm wondering if that made things worse? I can't bear to do it now.

I am off all oral meds at the moment, since about a month ago, and thought I was doing ok. I'd tried amitriptyline, pregabelin (Lyrica) and Gabapentin, but each stopped working after a while and gave me horrible side-effects. I don't know whether to risk going back on one in hopes of help or not. My pain doc says those are the only 3 meds with a chance of helping. I have codeine and tramadol, but don't use them because they don't seem to affect the CRPS pain much, and I don't want to spend my life drowsy. At the moment I'm me, but me in too much pain to enjoy it.

I'm so miserable guys. I thought I was doing ok, managing it, and this last two weeks it has just gone to a whole new level and I can't get comfortable at all I'm frightened to death of banging into things with it, because from a minor scrape on my little finger (unaffected limb) last week, I know my body is overreacting to pain big time. I'm trying to be calm and focus, and breathe and distract myself, but none of the usual stuff is working.

I can say this to you because it's anonymous, but yesterday I was looking on the web at methods of suicide. Not for now, but because I can really see a day come where I cannot take the pain any more. I daren't tell any of my docs because I'd be on anti-depressants and surveillance like a shot, and then it would be all they saw on my records.

Any practical advice or suggestions are very welcome. I'm in the UK. Thank you so much

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 04-17-2013, 06:18 AM #2
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Hi Bram,

Isn't it weird how you can go from thinking you have a handle on things to a "not-so-good" place? Yuk X a million!! I really can feel your pain through your words. I have CRPS in my foot too and as you well know, what works for one may or may not work for another but I'll tell you what I do.

*I soak my foot in lukewarm water at least once a day. That seems to help even though it sounds counter-intuitive to put a hot foot in warm water! No warmer than lukewarm though. Actual hydrotherapy is even better. I swim in a lake (when it's not frozen like it is now in Minnesota!).

*After the soak, I perform physical therapy (taught to me by my physical therapist) at least once a day. It is nothing that complicated, just general range of motion exercises and stretches for both the foot and all of my lower body. This allows me to "MOVE" the limb, which I think is the cornerstone to control. Not moving the limb is not a good thing.

*My mainstay medication is gabapentin. I too had some undesirable side effects with the gabapentin but they went away over time. It is my understanding that it takes at least 3 weeks (sometimes more) for your body to adjust to the medication so you may want to consider reintroducing medications and titrating the dosage up slowly to help you adjust. Although it isn't real powerful, over the counter naproxen sodium (ALEVE) helps with my inflammation and pain and is inexpensive and generally tolerated pretty well although you should take it with food to avoid bothering your stomach. I take naproxen twice a day. Cymbalta is another drug that has helped some with CRPS and might be worth consideration.

*I also practice meditation to help with pain control. A good book about this is "The Mindfulness Solution to Pain Control" by Jackie Gardner-Nix. It's hard to describe in a paragraph but there are techniques that can actually change the way the brain processes and perceives pain. It has helped me, although it is a work in progress. But any complementary therapy is worth considering. Click on this link and scroll down to healing practices A-Z. Some of these techniques can be very, very helpful with CRPS!

http://www.takingcharge.csh.umn.edu/

I wish you nothing but improvement and better days Bram. Have you considered trying a different doctor to get a different read on your situation? Sometimes the pain flares can last a long time. I hope you can find a recipe of things that can help with the pain. We're with you all the way as cliche as it sounds, we are all in this together!!

Last edited by birchlake; 04-17-2013 at 06:41 AM.
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Old 04-17-2013, 10:28 AM #3
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Bram,

I remember feeling like I would never survive life with all this pain and feeling like not a sole understood me. But then it happened, I got some relief. It was not a cure just a some relief with my patchs and my lsb's.

Please hang in there. I know it is hard, but you never know if your relief is around that corner.
(sorry didn't read your whole post, now days I can't read long threads, every thing gets blurry.) But I want to give you a hug.
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Old 04-17-2013, 12:19 PM #4
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I cant offer you much more advice other than what is already said, but i know with me that a flare up is when im emotionally at my weakest. So take note of way you got relief this time and when you do get relief plan ways to cope with the next one.

I think we all consider our fate when the pain us unbearable, I know I have, so you are not alone with your thoughts. I think they are justified considering the pain we experience and how alone we are with our pain. Im currently experiencing a new level of pain and length of flare with each one, but im feeling prepared to handle it. It also gives you a sence of control over this. Well most of the time anyway.

My feet currently feel like i have the worst chilblanes x 100. and i find that my slipper boots are the only shoe i can wear when they are like this. They are like a ski boot crossed with an ugg boot and like wearing cussions on my feet. I also find elevating my legs helps.

Sorry I cant give you any other advice, Im new to this too and still learning. Im new in the feet dept too. All I can really offer you is understanding and support. I really hope your doing better.
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Old 04-17-2013, 02:40 PM #5
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Thanks guys

I'm doing ok at the moment. I took off my lidocaine patch at 12, and the pain has been worsening since. I did the lukewarm epsoms footbath about an hour ago, and although it was painful to start with, and definitely not fun getting my foot out of the water and into a towel......it's not been too bad since, and I've kept my foot moving against the end of the sofa so it doesn't just sit and burn. Problem is that if I stop moving it, it does burn up badly, so I probably look a bit mad! I certainly feel it

I've found that the elevating does help a bit too, but if I stop moving it, things go bad quickly. It's putting my foot to the floor that's bad when it's like this, feels like its going to burst, eek. Why are evenings so awful?

I've been reading up and am seriously thinking about going back on a med, probably Lyrica as it seems to be associated with less side-effects, gets absorbed by the body quicker, and is used by your body more than Gabapentin. I had bad gastric issues with Gabapentin, so I'm not keen to go back there... What do you think?

Thanks so much for the support. I hate the CRPS in my knee, but this is terrible in my foot and I'm hating it so much. I had a quote today for a stairlift. I'm 42. Good grief....

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 04-17-2013, 03:22 PM #6
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I also have it in my foot and ankle. Not fun. I use a rollabout to get around on the outside and whirlpool on my change (patch change) day. On flare days, I would try everything, but never got relief until my emotions were back in check.
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Old 04-17-2013, 03:56 PM #7
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Yes the emotions thing is such a big part of CRPS, as a few of you have said. It's actually going ok so far this evening (hope I haven't spoken too soon!). I've been concentrating on breathing deeply and relaxing my body properly - makes you realise how tensely you are holding everything together... It's not foolproof, but does help you feel less panicky.

I've also been doing some desensitization with a powder brush on both feet. I've realised that it does help in its own way, and it's something that I've not been doing often enough, so I've made a little pledge to my feet that I'm not going to neglect them or give up on them.

They still damn hurt, but I'm doing ok. And you've all helped today, thank you!

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 04-17-2013, 06:34 PM #8
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I've been exactly where you're at. If things got so unbearable, what would I do and how would I do it? But so far, I'm not there. I use Ketamine cream (mixed with other pain meds) on my foot. That seems to help a lot. Additionally, I'm on Lyrica which really helped but also adds weight, Cymbalta, Tramadol & Tizanadine. I think my pm's thought is to hit it with all there is to keep it knocked down as much as possible. If another part of my body starts to hurt, I use a lidocaine patch there. I also use the epsom salt soaks and do the pt that my therapist taught me. I hope you find some relief soon.
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Old 04-17-2013, 10:10 PM #9
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Default Burning pain ...

Oh Bram ... I am so sorry for your terrible pain. I do understand. I cried when I read your post. You wrote with such emotion that I couldn't help but feel your pain too. Oh how I hate this disease!

My CRPS started in my left foot and eventually landed in my right foot. The burning pain is unbearable. Honestly, I used to ice my feet until I learned on this forum that CRPS patients should not use ice. I wonder though if you couldn't cool the temperature of the soaks you are using to slightly cooler than room temperature. I don't mean supper cool but enough to at least sooth your poor feet.

I also use a ketamine clonidine gabapentin lidocaine etc combo lotion when the burners are turned on in my feet. My Doctor prescribed it. It is a special formulary/mixture. The Doctor's office took care of contacting the pharmacy: Sheffeld Pharmacy and Homecare DNA Sheffeld Expert Compounding, 500 S. Montgomery Ave. Ste 108, Sheffeld AL 35660, 855-381-8466. I use it when desperate. I am rationing it because my insurance just changed. It helps. Typically I don't notice a difference right away, but I always fall asleep. When I wake I am better. Usually I have residual pain but nothing like when it is at its peek.

I don't wear shoes when my feet are on fire. I wear Nufoot slippers if I go out. These do not have a hard sole though. They work for me because I am in a chair if I leave the condo. I don't need a hard sole when I am in my chair. http://www.amazon.com/Nufoot-Womens-...JCTJSR0D&psc=1

Suicide ... damn! Please put that thought out of your mind, even for later when.... I've been reading your responses to the postings. This one just got right past me. I think you should share this with your Doctor. If you can't, then you need a new Doctor. If you try the Lyrica again, perhaps it will help your mood too. It is an antidepressant but also used to treat pain. I know you prefer to endure CRPS without, but it might help too.

I feel so sorry. I wish there was something we could do to help immediately. I know you where/are desperate for pain relief. I am frequently on throughout the night because I do not sleep well. At night is when I read these updates. Please contact me anytime if you need to talk.
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- CRPS Type II with migraine, Dystonia and spasticity
- Diagnosis 2010 following
- Injury 2004 L5S1; 2nd metatarsal left foot fracture; left hip fracture
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Old 04-18-2013, 01:16 AM #10
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Default To BRAM: RSD in Toes and Feet

Bram, I am so sorry. My 14 year old daughter also has her RSD in her feet and toes. Are your toes disfigured? Honestly the only thing that has helped my daughter is therapy(PT,OT,Psycho therapy) and IV KETAMINE. She has had 14 hospitalizations, has been on every med imaginable and nothing else works. She takes Ativan to help her cope with the pain, and that helps. I just recently consulted a podiatrist in Sacramento, CA, that has worked with RSD in the feet/toes and he recommends a pulsed magnetic therapy. I have not researched it, but it is non invasive and could not hurt to try. My daughter has had every type of block, infusion, steroids, IVIG but the combination of the 2 things has worked for us. Although it is not a permanent fix, she gets anywhere from 6-8 weeks of relief and then is back in the hospital doing another “tune up”.
Don’t give up. You can fight this god awful disease!!!!

KAS
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