Spread
 

Hi all!

Man RSD has to be the worst thing on the planet. The pain is like the energizer bunny lol. The darn stuff has spread throughout my body now, and sometimes it is very difficult to even move let alone walk.

I have to force myself to get up in the morning, and once up can hardly get around. Sometimes the pain is so bad I forget to breath, im just sitting there all clenched up and holding my breath.

I had a friend recently send me an email. It really hit me hard because I knew that RSD has effected me, but didnt realize that others were noticing it so much. I posted it up on my forum, and would have posted it here, but I gotta get my feet up. They are so swollen they feel like a macy's day parade balloon. lol

Here is the link to my friends point of view on RSD.

http://www.freepowerboards.com/crps/crps-about66.html

:grouphug:

Hi Allen, Sorry you're having such a tough time of it right now. Hope something....anything...comes along to lighten your load. I read your friends letter and it brought tears to my eyes. What a dear friend you have and how eloquently he described your struggles with this disorder. I think as RSD victims we often don't recognize what this disease has done to our minds and our bodies. The deterioration that we experience comes on so gradually that we seem to incorporate it into our everyday life and don't notice it's impact on us the way our friends and family do. That letter was a real eye opener for me. It made me stop and take a look at myself and what this disease has done to me. I must say it was not a pleasant revelation but a much needed one. Thank you for this post and I'll be hoping for better days for you...Jeannie

sorry you are feeling this way:boy(sad): i hope you are able to have better days soon. i pray that you and the rest of us will one day find a solution to end this crappy disease. until then i hope you can stay strong and know that you are not alone. wishing you nothing but peace and pain free moments, jen

you got to see your rsd through someone elses eyes, and it is an eye opener for all of us. i often think i 'hide' my rsd well, but after reading your letter i see it more clearly. thank you for sharing.
i am sorry you are flaring all over and hope it calms down soon.
joan

thanks to you, Allen & your friend .... for this Letter shared

what a Blessing to have a friend who is so caring

may more Blessings Come & be w/ you & all suffering... esp. Relief

Hi Allen,
 

That was such a beautiful letter. It's so good to have friends like that to walk through this time of your life with you as well as the good times and know what you are going through.

I have thought of you, Mark, and Vicc lately. I was wondering how all of the guys were doing. I know though when someone usually disappears on here it is due to more pain or getting better. Most of the time more pain.

I hope you start seeing some better days and are able to hang around here with friends even if you can't get out with your other friends.

Ada

Hugs Allen. I'm sorry you are having such a difficult time right now. I hope it calms down for you soon.

You are in my thoughts and prayers.

Thanx all!
 

You all are the best! Dont know why I didnt get in here sooner and post up, cause ya all have made me feel mucho better. :)

I do have some things finally going in my favor, at least it looks like it at the moment lol. I went to a walk in emergency room clinic the other day, and they signed me up for a type of emergency insurance that is good for 3 months at a time, and also gave me an appointment to a pain/primary doctor.

They couldnt do much for me besides prescribe something to get my blood pressure down, but im grateful for even that. The doctor that treated me was the clinics Director. They have several clinics at each of the three hospitals, and it is a 6 month wait usually to get in. But because the director was the treating physician, he got the appointment set in 2 weeks!!

So I am a little relieved, and that helps keep the pain a bit down also.
This RSD has really been surprising me as of late. I was thinking it just cant get much worse than it is already, and low and behold it can, and does get worse.

I cant shake the feeling, and thoughts, that this company that owns and runs all these clinics and hospitals should be paying for my care since they are the ones that put me in this condition to begin with. Every time I have to go down to that hospital/clinic, it reminds me of the fateful day that the doctor looked at me and said Oops! Not, so sorry, or let me take care of that, just OOPS!

I can tell you that I would be held accountable for my oops, but these medical organizations, and doctors can nearly get away with murder in california with no repercussions. Well maybe a slap on the wrist for killing someone, but that is it really. The doctor that did the surgery on me actually caused the death of a woman 2 years after working on me, and they just warned him.

I really need to get over this, but it is sooo hard when you have lost everything, and feel like even your life is gone too.

Well sorry about the rant, just needed to vent a bit.
I hope no one else ever has to go through what I have gone through ever.

I am still feelin pretty cheerful.

:grouphug:

Hi Allen,
 

It's hard to get over the fact that a person wouldn't be in the shape they were in had it not been for a QUACK.

Mine was a Osteopathic. I was sent they only so she could help several Drs. diagnose me. She popped all of my bones in my body. When I went to her I had TOS on the left side but it wasn't diagnosed yet. She brought it to my left side. I honestly think she broke my right arm. I have had 4 surgeries on that arm and have about 4 to go because of her. The good thing with her though, she was actually ran out of this town. I don't know by who but she was only here about a year longer and then I was told she was ran out. I would say some big wig that she did something too or to a family member. I tried to sue her but the lawyers said my case was so complex at the time they couldn't figure it out. After 8 years, now we have it figured out but it's too late to do anything with her. I believe though that God has a plan for everyone and some people don't want to know what he's got planned for them.

I am excited that you are getting to see a new Dr. I know what you have been through and am so happy that you are finally going to get some good help.

Your friend,
Ada

hello stranger
 

I do know what you mean bud.. I see the girl who ran over my foot at work and she says.. "are you still not better?" or nothing at all to me.. she is a bit of a snob.. we usta call her princess at work.. but when I see that car I get a sick feeling inside and anxiety for a while.. and I can't het it out of my mind after seeing it or her at social functions (weddigs ect),, it's unhealthy and needs to be delt with.. mine anyway I do feel an empathy for what you are saying my friend.

take care Allen and please don't be a stranger we miss you around here
:grouphug:
Sandra

Hi guys,
How do you know if it has spread. My left leg has the RSD but my right foot is starting to hurt really bad. The stabbing pain, temp change and spasms.
Allen Iam sorry for what your going through. My prayers are with you always.
I hope you have a better day soon.

Sue K.

Hi Allen
 

It is so good to see you posting again, just so sorry you are having such a rotten time right now.:( I read the letter from your friend, it really addresses the issues of what RSD does to the body, but also to the mind. I can tell by your website that you have always had a lot going for you--I listen to the music -love the healing music!!! You still have so much to offer, I pray you can get past all this and on the path to feeling better real soon:) Do you know how Vicc is doing? We also miss his wisdom!! Healing prayers going up on your behalf :hug: Carose

sandra,
i feel that way when i see the doctor who cause my rsd. he told me to 'just go back to work'. did he not see the broken hip appliance he out in and the brace and the cane i was using and still am using??? he saw what he wanted to see. i was an intensvie care nuse, how do you go back to work like that? the people at the hospital said .. what is he talking about? you can't work! then off to Boston for a new hip i went, but the damage was done. i did write him quite a letter a few years after it was done. i got out what i needed to say about his lack of compassion after the surgery and how i hope he never does that to anyone again. but i was not so nice in the letter ... ha!

joan

Dear Allen,

I know you have discernment. I am so sorry you had some five and dime Doc., I really am. Hang in their and make sure you get one that took their oath seriously. Much Love, Roz

Hey Al,

That sucks! but I'm glad that you have emergency insurance, that's great! and that you are seeing a pain dr. Fingers crossed they help you! This pain is truly awful especially as it gets worse and worse and worse.. and as the stupid RSD spreads.

It is hard looking back. To think I am like this because of a fall. To forgive my friend that made it spread into my left side and who laughed after being told that it was now full body because it being that side. Who couldn't believe that the RSD osteoporosis was so bad in 6 months that just dropping something on my arm broke it. It's hard to forgive another friend that broke my ankles accidently after dropping me and who put me in the wheelchair, to forgive the dog bite that caused the flare that made me unable to eat, to forgive broken elbow that worsened the RSD (my sister and I had a fight) etc etc etc....

However, to go onwards we have to forgive, it's the only way I have found is to try and get peace. I still get angry going to hospitals where my pain was not adequately believed although the RSD was, to going to doctors that believe that stress all plays a part, or that to not cry means to not have pain. AGH! But life goes on and life moves on, maybe not the way we want, but things always work out good in the end.

Love ya babes

Froggsy xxxxxxx

RSD and bones
 

Side Note to Frogga -

You speak of RSD induced osteoporosis. I've also heard you mention bone crushing pain.

I don't know if you tried it, but I've had about a 50% reduction on my deep bone pain following infusions of Zometa (zoledronic acid), which is in the pamidromate family, a class of drugs designed to inhibit the uptake of bone tissue into the blood stream in patients with multiple myeloma. (I thought that would get your attention.)

According to my pain dr. - a prof. at a local medical school - they don't have a clue as to it's mechanism in treating RSD, all they know is that it works. I may have mentioned this article before, but it's definitely worth checking out: "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Medicine. 2004; 5: 276-280, a copy of which is attached. See also, the attached copy of "Pharmacologic Therapies for Complex Regional Pain Syndrome," Mackey S and Feinberg S, Current Pain and Headache Reports, 2007; 11: 38-43, and in particulr the discussion under "Bisphosphonates."

I personally didn't gain any relief after my first infusion, but after the third in three months, things got much better. The only downside is that you can't need or anticipate having any major dental work done while you're on the stuff, e.g., root canals, where it's been linked to jaw necrosis.

I would definitely have that one checked out.

be well,
Mike

Thanks Mike!! Is this the same as pemidronate? I had it to start with and it wasn't useful but hey, I can try again. It sounds awesome! The bone crushing is so hard to handle isn't it? I will attempt to get my PM dr to LISTEN! (Well, new one in.. October... so fingers crossed!!!

Love ya and thanks sooo much

Froggsy xxxxxx

Hi Allen,
Sorry to hear that you are having such a tough time. I know about the breathing and having to get your feet up. I want to spend more time on the computer and physically can't. I think alot of us can sympathize with you there. It was a physical therapist that caused the spread for me. I'm in CA and was encouraged to sue. The attorney dropped the case at the last minute and is now suing me for outrageous expenses.
I hope this new doc can do something that gives you some relief.
Linmarie

Dear Frogga -

Yes. Zometa is a pamidromate. My apologies for putting in the wrong article in the first post: I confused zoledronic acid [Zometa] with Zicontide [Prialt].:o (I guess there are many reasons why I'm not allowed to write script.)

Anyhow, I corrected the last post and attached a couple of articles to it. Check them out when you can.

Mike

Thanks Mike! That's great!! I guessed it was, did it help you after the first infusion? or did you need more?

Love ya

Froggsy xxxxxxxx

F -

It took three infusions, each a month apart, before it really "took." Since then, I get "boosters" every 4 to 6 months.

M