Hi

It's been a while since a posted..
I've been reading through a lot of the posts and many are helpful. I have been on many different medications trying to find relief. The next step is a possibly a SCS which I am scared of. I do not want to have anymore problems develop.
I am having a lot of creeping feelings throughout my RSD limb and in between my toes. This is driving me crazy. Is there anything that has helped anyone for this?
I guess I've been in denial about having RSD...I still am to a point.
I suffer with terrible headaches also and now the mood swings are kicking in because of the pain and having to depend on others to do things for me is just very out of normal life for me. I feel like I lost so much of my life. I try to look at the good but lately how is that possible living with this nightmare?

Sorry for this post being a downer...I'm really trying to find answers.
Thanks

Hi Summertime,
You don't EVER need to apologize for how you're feeling. We all get there.....sometimes numerous times a day!! I understand your denial.....I think I am going through the same thing. I expected to "get better" after my nerve blocks since they caught it early. Instead, it has spread like wildfire in a few short months. It IS a grief of your "old self".....it is sad and unfair. Don't let anyone rob you of your proper time to mourn through the grief of this disease.

That being said, we ALL still have something we can contribute to the world in our own way.....regardless of our physical state......from bedridden to wheelchair to cane. Life that you knew it may be forever altered because of RSD, but it has opened up different doors of opportunities you may not have known were there.


I wish I had some solution to your dilemma regarding the SCS. I am grappling with the same issues and have decided against it for now for the same reasons as you. Also, the creeping feelings aren't something I have personally experienced (though I've heard others have). They just started me on Cymbalta, which seems to help some with the horrible burning pain and stabbing. Have you considered asking your doctor about that?

I'm glad that you've come back to post. Know that we are all here to listen to ALL of your feelings.....not just the times when you're upbeat! Please keep us updated on how you're doing. I hope you can find the right combination of treatments to help you!! Best wishes!!

THINK FOR EVERY PROBLEM THEIR IS A SOLUTION. I can sit here and tell you how sorry I am, but on a serious note would that do any good?

You have got to have an MD that cares, about why you have RSD in the first place.

That's why I am out of pain. Hugs, Roz

Do you think this is always the case? I feel like I have an infection as well and part of the reason is I feel a lot better on antibiotics. The doc said this is fairly typical that when you have a serious secondary problem the brain tends to ignore the pain a little. This doesn't sound like what I experienced though.

For me this thing seems to act like an infection or infections of the nerves. Everyone is so different it seems possible there are dozens of conditions which comprise RSD.

awe, Summer, I sure wish I could ease your mind. I wish I could sit with you for an afternoon and we could just talk. I feel like I have been around the block with this nasty RSD, and at least, if nothing else, I could be a darn good listener.

I don't agree with Roz's point of view, and I don't think it helps you very much.

I think once you get to the point of acceptance, you will have come to terms with this. There are people who get RSD and get better. Sometimes it just gets magically better all on it's own. I know someone like that. Then, there are those that live in a spiral of unbelieveable nightmare that even I cannot imagine. Somewhere in the middle are most of us.

I had RSD for several years when some docs said it was, other said it wasn't... then it attacked my shoulder in a more traditional presentation, and there was no doubt. Then, I had to face it. I mired in doubt, denial, and many other things for months, maybe even years. Finally - I sort of found my way out of that. I don't know if anyone can help you with that, it is such a personal thing. You will have to figure out how you are going to deal with it.

I know I have mentioned Shinzen Young's book to you before, but his words really did help me... helped me figure out how to have pain without the suffering. How to separate the pain from other things.

My half sister had RSD - she took her life. I don't want to do that, so perhaps it makes me more stubborn about it, I don't know. I believe my father had it too - he had all the signs. So mine is most likely genetic.

Last week, we had a terrible storm go through here... the barometric pressure dropped really fast. That always makes my pain worse. I am 50, and starting to go through the change. I never had problems with cramps until I got RSD, and they have been much worse in the last couple years. Well, the day of the storm, I also had TERRIBLE cramps. And, I had the start of the flu or something.

I was at work, and I had the worst pain I have had in years. I left work, but I should not have been driving. I kept stopping at stop signs and getting out to stand by my car in the cold air to clear my head to be able to drive on. I live in the country so no traffic, and it was at night so it was ok to do this. I didn't know what to do. Go to the ER? They wouldn't know what to do for me.

Finally got home. I heated my bed - do you have a bed warmer pad? they are wonderful!... climbed in, and started with the meditation. It took a good hour, but I got myself calmed down. Got over the FEAR part of the pain. Started vomiting - then realized this was not "just" pain -- I had some flu or food poisoning or something else going on. Took some over the counter stuff for that. Kept up with the meditation. The pain was UNREAL! Felt like I was being beaten with ball bats, ripped apart, shocked with electric all at once. Once I got to the point where I knew I wasn't going to need to drive myself anywhere, I took some vicuprofen (which does help with cramps) and kept up with the calming thoughts. I took a few hot showers, an epsom salt soak. By dawn, I was a bit better.

I didn't get any sleep. I happened to have a family doctor appointment that morning. My doc is my primary doc for treating my RSD - she had never seen me when I was "bad"... she wanted to give me steroids, a shot of something - do something for me. I turned her down. I told her I would be better when the weather improved. She asked how I got through the night, and was amazed when I said with meditation. I told her it's a matter of staying calm and not being afraid of the pain. She again mentioned that she thinks I need to quit working and go on disability. I don't want to do that.... I can do my job, I love it, and it pays better than not working, and the insurance is surely better. She did insist that I try Wellbutrin again. She's big on antidepressants for pain, and I had bad reactions to all of them except wellbutrin. She asked again if I wanted to try going on pain meds all the time - no, I am not ready to do that either.

All of this long story was to tell you a bit about how I got through one of the worst 48 hours I have been through in 5 years. Maybe it will help you.

RSD is a horrid disease. It can take everything from you. I have very few of my friends left. Only 3 of them still come around. Most of the rest of them say they "can't stand to see me like this"... I can't do many of the hobbies I used to. I can't keep my house like I used to. I can't do many of the things I want to do...

Summer --- somehow you have to find a way to focus away from the I can't to what you can. No, I can't breed and grow thousands of daylilies like I used to. Now, instead I sold off almost all of them, used part of the money and bought a really good camera with a macro lens and I take cool flower photos instead. I used to love going to big music festivals - I can't travel and I can't stand the vibration of listening to the music anymore. I sold my stereo system. But I found I CAN listen to the music with an iPod because there is no vibration on my body with the earplugs.

With time, you learn to adapt. Next month, it will be 9 years for me. Give yourself a break, sweetie. RSD is a huge challenge.

And, you NEVER know. You may be one of the ones that one day it just starts to get better - and it does - and it never comes back. It does happen! My half sister will never know if she will be one of those. As long as we keep trying, and keep going - we have that chance!!!!!

big hugs, Summer!

hi summer
i amso terrible sorry about how bad your rsd is . i think that it takes time to get used to rsd i know that sounds weird but after 11 yrs i found what i can do and cant and i love the stuff i can . i was really young when i got rsd i was 16 and like you was in denial all my friends let told me i was faking for attention all i had was my lil sister that helped me out alot. its really hard after you find out that you have this horrible diease then you are like stuck is how i felt and i couldnt imagine having rsd for a year let alone 11. have you been able to find any doc to treat you at all.

I just wish there was something i could do for you. please try and hang in there. about the creepy feeling i have taken anti sesiure meds but it only helps alittle nothing else that i have found has helped this at all ,
any time you want to talk just PM me

hugs carrie

Summer, I'd like to tell you that after 20 years of RSD in July, that things do change and get better some what.
Like the other posts say, you learn what you can and can not do. You learn how to do things differently. Differently from what you used to do and different from others, and that becomes ok. You actually will come to learn how to manage this horrible disease. Maybe not what you wanted to hear, but the upside is you can still have a life.
I am slow to post, I'm not sure that anyone wants to know that one could have RSD for 20 years, but I'll tell, you this...life just becomes more valuable. Each day means more and you learn what is important in life.
Do not hesitate to post, ever.
This challange requires so many different approaches and each one of us is different. Therefore, the more information you get the better you will be able to cope.
I too have the creepy feeling and sometimes I think it will drive me mad, but it hasn't gotten to me yet. Neurotin helps me with that.
Take care, dear. Ask away. We will all do our part to help in our own special way. Hugs Di

Summer,

i also was diagnosed with RSD -guess cause they couldnt figure out what i had. after a year and many doctors, it was determined to be small fiber neuropathy.. not that this is much better or has any more answers. i have found some relief with prednisone (which i hate being on) but also found the klonopin actually helps the nerve pain. might be worth discussing with neurologist

A big thank you to everyone for your support. I am struggling with RSD and other health problems as well. I spent part of the day in bed with a migraine and nausea yesterday, getting up often to walk around and put a cold cloth on my head.

I go through so the different range of emotions, angry, frustrated, sad, sometimes I begin to accept this but when the pain gets to the point it has been... at the doctor who damaged my nerves.

For the most part I am beginning to accept RSD...I do not have a choice. It scares me though, a lot to be quite honest.
I am fortunate to have a supportive family, who is there for me and helps me.


For those of you who asked me about different med's...I"ve tried many of them, I have allergies and sensitivities to many medications out there. My doctor said to hang in there "we will find the right combination for me." I hope that is soon. I notice the colder the weather gets,the worse I get.

I'm here for all of you as well.We are in this together....
Many thanks and hugs to you all..

Summertime,
I completely understand how you're feeling. I think it is completely NORMAL to have such a wide swing of emotions. It is all part of the grieving process. I suffer from migraines as well (with the nausea) and know how debilitating that alone can be on TOP of your other pain. I am so deeply sorry you're going through this.

I am very sensitive to changes in my own meds, and recently allowed a drastic change of two in one day that has actually helped me a LOT so far. I was put on Cymbalta and Elavil. The Cymbalta doesn't leave me drowsy like the Lyrica did and the Elavil helps me sleep which just helps everything feel a little better. I had to really get desperate to be willing to change so much all at once, but am glad I did and am really not having any bad effects from either.

I also take Inderol for migraine prevention (which has knocked them down to 1 or 2 a month instead of several a week) and then Maxalt when one does come on (and phenergan for the nausea). I may try to switch over to Topomax eventually because I've heard that helps with RSD as well as for migraine prevention.

My suggestion would be to start keeping a daily log or journal of how you're feeling and what else may be going on. Eventually, you may find a pattern in what increases your pain levels or what brings on a migraine and then you could start to tackle those individual triggers while you're waiting on finding the right med combination. It also might help you feel a little more "in control of" your body....which I have found is a big stressor since my diagnosis......feeling like my body is doing random things that it shouldn't be doing and I can't stop it and have no control over it.

It is SO good that you have a wonderful, supportive family as well to help you and you can ALWAYS write us......you KNOW we understand how you feel.

Please feel free to PM me any time. I will always be happy to listen to you vent and am new in my diagnosis as well. It IS a lot to deal with and a lot to absorb. I hope this post finds you feeling better today. Do something special for yourself. Whatever you love the most!! Just give yourself a little treat and enjoy it!! Hope to talk to you soon!!!