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 02-02-2009, 09:56 AM #1
Summertime Summertime is offline
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Hi everyone

I'm still suffering with so much pain. Like many of you, my doctor has tried different medications but I was not tolerating them, so I'm back to my other med's.

I believe my rsd has spread to my foot. The pain began a week or two ago and now it's burning, it hurts like **** to walk on my foot. It's all the same side that I have rsd. When I was first diagnosed it was in my groin area from surgery then spread down from there over time.

This is horrible. I am praying for some miracle but it doesn't happen.
Any words of wisdom would be much appreciated. I know many of you are suffering much worse than I am....I really shouldn't be complaining, but I feel like I'm so alone in this nightmare.

Thanks for listening.
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Old 02-02-2009, 10:17 AM #2
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Hi Summertime,

I'm so sorry to hear that you are still in a lot of pain and that you feel alone ... please remember though that you AREN'T alone and that we are all here for you because we DO understand what you are going through unfortunately! It seems as though a lot of us are going through a rough time right now - I don't think the weather is helping so please know that you aren't alone and that we are all here for you!

I'm so sorry to hear that you think your RSD has spread! I wish I had some good words of wisdom for you but I just want you to know that I am thinking about you and that I DO understand what you are going through!! I remember when my RSD spread from my left leg to my right arm, I felt SO bad and was very depressed and angry but I later realised that in order to try and get better, I had to come over the denial stage and try and "accept" it and focus on the therapy!! That's not to say that I still don't get angry, I DO but I can cope with it a little better than what I used to be able to!!

The best advice I could give you is to try and move your leg as much as possible ... I KNOW it hurts a lot but it's important that you move it to try and get it at least a little bit better!! Please speak to your Pain Management Doctor also and see what he/she says - don't just put everything down to RSD, I know most of the time it turns out to be RSD unfortunately but it's important that you have other tests done to rule out any other conditions that can be easily treated!!!

I'm thinking about you and please know that we are all here for you whenever you need us! If you ever want someone to talk to, I am here for you!

Love and pain-free hugs!
Alison.
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Old 02-02-2009, 10:57 AM #3
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Quote:
Originally Posted by Summertime View Post
Hi everyone

I'm still suffering with so much pain. Like many of you, my doctor has tried different medications but I was not tolerating them, so I'm back to my other med's.

I believe my rsd has spread to my foot. The pain began a week or two ago and now it's burning, it hurts like **** to walk on my foot. It's all the same side that I have rsd. When I was first diagnosed it was in my groin area from surgery then spread down from there over time.

This is horrible. I am praying for some miracle but it doesn't happen.
Any words of wisdom would be much appreciated. I know many of you are suffering much worse than I am....I really shouldn't be complaining, but I feel like I'm so alone in this nightmare.

Thanks for listening.

Summertime,
I am SO sorry to hear how much pain you are in. Have you contacted your Pain Doc to see about getting a nerve block ASAP??? The quicker they can start treating this new site, the more likely it can calm the symptoms down. As much as it hurts......try to remember that the pain is caused from your nerves misfiring. Try as much as you can to keep the foot limber and touch it as much as you can (however lightly you need to at first) to desensitize it. I have been very fortunate to get my allodynia down to a manageable level by doing that. I would FORCE myself to lightly touch it several times a day, or sleep without socks to let it touch the sheets, or have my husband lightly rub it when I couldn't force myself to. It took over a month, but I can actually put lotion on that foot now!! It still hurts sometimes more than others, but I have to keep reminding myself that it is just the RSD and that there really ISN'T broken glass in there or ants biting my toes (though sometimes I still check just to make sure!!).

You never need to apologize for your pain. It is just as real and intense and scary to you as others' is to them. I don't think anyone is trying to win any contests here for being in the "most" pain. You are absolutely NOT alone in this. Every person here knows what this monster feels like.

My advice is to keep praying (God DOES hear every prayer, though sometimes He says that His grace is sufficient for now), keep that foot moving (even just moving it back and forth to keep it limber.....do NOT immobilize it), and call your Pain Doc. Do whatever you can do to relax and keep yourself calm and comfortable in the interim. Warm (NOT hot) epsom salt soaks are soothing and you can wiggle your foot/toes around in the water.

You know I have a lot of the same med issues as you and I understand how frustrating it is to do the trial and error process. How much time did you give them in between changes in doses or meds??? Sometimes it can take our bodies a month to fully adjust, and I wouldn't let them start me on more than one at a time so that I could tell which one was working vs. causing more problems. I also tried giving my body much longer than they recommended before trying to increase the dose. I'm still playing around with what is going to work for me and give me the most relief with the least side effects.

Please keep writing and keep us posted on how you're doing. You can PM me any time you want to vent or need to talk!!! I'll keep you in my prayers!!
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Old 02-02-2009, 11:52 AM #4
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I hate to hear you are suffering in pain and nothing is helping.

Has you doctor considered or offered you lidocaine infusions? I've been having lidocaine infusions for the past few years and it has been a life saver, especially since I'm so sensitive to all the other medications. This has really worked for me and many other patients here in the Vancouver area too. I've just been switched over to the subcutaneous pump which I am sent home with. The IV infusion required the patient to be on a heart monitor so the subcutaneous is easier and more cost effective. I can send you the patient information from my pain clinic if you would like to learn more. The side effects are minimal and I typically have relief for 2 weeks. I attached a picture of the pump, it is the size of a baby bottle and easy to tuck into a pocket or a fanny pack. I just rest for the day as it makes me sleepy. Send me a pm with your email address and I'll send forward the patient info to you.

I hope you are able to find relief soon. Don't forget to breathe!

MsL
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Old 02-02-2009, 12:24 PM #5
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Summertime,

You are not alone.. Just think of us as your friends or forum family. I am suffering too but had the opposite happen, mine
spread from my foot to my groin. I am in unbelievable pain..I am going to call my Pain Management doctor today to see what else they can do..

Have you tried physical therapy? I am going to a very gentle therapist and she is using a special technique called Lymphatic massage..or something like that.. To keep the fluids flowing in the lymph system.. It is easing my swelling.. She also put a long sock on me that is helping to circulate the fluids.. It hurts but I can see it is doing some good, so I am hanging on..

All I can say is try all that you can until you find some relief..

We care and we will listen..

Pauliana
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Summertime (02-03-2009)
Old 02-02-2009, 12:53 PM #6
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Hello Somertime

I am sorry to hear, that your foot hurting you so bad, OUCH, I wish there was something that could be done,

the bottom of my feet have been on fire, for the last week, after I had a bad flair up, I can understand the pain you are going though,
nights are the worse, you can even see that there is something wrong, were I have my burning pain in them, they are very red, but cold UGG
hate the burning pain,

I hope you get a brake in your pain soon

Peace
Kelly
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Old 02-02-2009, 01:20 PM #7
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Keep looking for the right combination of drugs.

I hope tomorrow is a much better day for you.

All I can do is tell you what helps me and that seems to be as much exercise as I can tolerate (very little), ghinkho biloba, antioxidents, good diet, and (of course) the medications. (and the tens once in a while)

My primary problem never was pain. The pain is ugly even in small quantities but mine doesn't get severe too often. It doesn't respond well to any pain killers and even morphine just takes a little of the edge off. It has been responding to ultram a little bit recently and it's great to have something that will at least help.

Warm water helps me a lot.

Ice will stop the screaming pain but then it always comes back nearly as bad.

Find ways to distract your mind from it. I know this sounds stupid but it actually works. It will limit your ability to concentrate, I believe, but it may be the biggest single thing in controlling the pain.

Pay attention to warnings. These can be exceedingly subtle but you might just get a warning that something is exascerbating the condition. This can be in the diet or just about anywhere.

You have to fight this monster but don't fight your foot.
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Old 02-02-2009, 02:30 PM #8
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Summertime,

I'm also sorry that you are suffering more now then you were before. I wish there was something I could say to make you feel better, but there isn't. Just know that I'm here for you. I've tried almost everything including 2 scs, and now I'm considering a pain pump. Don't know if I will. Just know that there are things out there to look into. some may work, and some may not. But, no matter what, we are always here for you, good days and bad days.

very gentle hugs.
mary
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Old 02-03-2009, 02:35 AM #9
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Pain meds just didn't work for me. Next month starts my 8th year with this. Started in one foot, now have it in both feet, one calf, one arm and hand, both shoulders, half my back, my neck, half my face.

I have managed to stay working. I am not functioning at full speed ahead, or at a normal person's level - but I think I am doing pretty well, considering.

Topiramate (topamax) helps the pain more than pain meds. Baclofen helps the muscle spasms and sleep. Norvasc, for high blood pressure, really helps the coldness and the swelling and redness. That is pretty much all I take day to day. Sometimes my headache, which I have constantly 24/7 really get bad and I will take tramadol, or if I am not driving, two vicoden.

Hot showers help a bit. Massage therapy helps a LOT, but I cannot afford it 3 x a week like I really need to go. My insurance does not cover it.

What really helped me the most was Shinzen Young's book Break Through Pain. Best $20 bucks or so that I ever spent. Taught me to deal with it. I learned how to - how can I put it - set the pain aside.

I have read your posts before. I hear your suffering. I think I have posted before that you should get this book and try it. I was changed just by reading the book. He explains that there is a saying "Pain and Suffering" but that monks taught him that meditation and the mind can separate the two so that you CAN have pain but not suffer. You need to learn to not be afraid of the pain. Once you can let go of the fear - it really does get better. The pain level may stay the same, but you can cope with it better.

I have an iPhone. It has an iPod in it. I keep relaxing nature sounds in it, as well as Shinzen's CD meditations, and some of my favorite CD's like Carlos Nakai. When I am in severe pain at work, I will go into the restroom, into a stall, and get lost in meditation for 20 minutes. I am NOT good at meditation at all. My mind wanders. But, I am good enough that it helps me!

If you get the book, and have any questions, fmichael here can help you. He helped me. He has been to Young's seminars and really understands the process.

I guess after all this time, I have accepted it. That does not mean that I have given up trying to find something that will help me... I have not. But, I am going to make the best of what I have. If this is the hand I am dealt, I WILL deal with it.

Remember - you can have pain without suffering. Give it a try, you might be surprised.

Gentle hugs to you.....
Jules

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Old 02-03-2009, 11:16 AM #10
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Hi

Let me start by thanking everyone, you are all wonderful to reach out to me and one another.
My injury is a work related so they are taking their time in treatment. I have tried PT as well as Topamax (which increased my kidney stone problems...OUCH!!!)

I see my doctor in a few more days and will discuss the latest pain with the doctors.
I do light touching, massaging, etc..It's just horrible.

Thanks again.
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