That is HORRIFYING!! Holy crap! This is totally and completely unacceptable and I cannot wrap my head around any of it. I cannot believe (oh I BELIEVE but it is so WRONG) that they are letting you suffer like this. What the hell is the matter with these people?

Okay...my head is spinning. Your lawyer NEEDS to get you in front of a judge immediately to make work comp approve some doctor's visits. I don't know the details of your case but IF medical is still open then you should still have this remedy open to you. I don't know how it works everywhere because every state is different...but I think there is always a way to request an immediate hearing to settle this sort of thing. Then you can get the approvals you need to see some competent doctor and not be stopped dead from seeing any just because they need those pre-approvals. Get on the lawyer about this...it is his JOB. I am not surprised that the insurance company would do this...they don't give a fig about your pain...but your attorney needs to force the issue and bring it before a judge so there is some resolution...IMMEDIATELY.

This is absolutely ridiculous and not right at all. My heart really goes out to you and I am amazed that you have survived this long with zero support. I don't know how you stand it...but keep fighting. And get on that lawyer of yours. I know that each case is different and maybe the partial settlement is what is slowing things down but regardless, if the medical is open then it is open and there should be a way to get it resolved ASAP without waiting any longer than a month for the hearing. I PRAY that you get some help soon.

yes, i know it has been a minute since i have replied to anything, but i had saw that i got soooo many responses already. thank you for this information, and i will defintely be looking into these new medications for myself.

thanksss
 

yes, thank you for the link. i will definitely be looking at it soon.
i know my parents care, but like you said, no one knows how it is until they experience it, and that is the part that really frustrates me about people; not just my family.

i hope things get better for you as well and i am glad to meet you and gain your support.

arm sleeves and rainy weather?
 

does anyone else wear an arm sleeve or protectant sleeve for their rsd? would you say that it helps? , because i really cannot stand to wear it for long periods of time.

how do you all do during the cold or rainy weather?
even the heat bothers me but, i cannot wear a jacket, so it is a bit tougher on me when the weather is bad.

I could not wear hardly anything for months when my RSD spread to my upper body...mostly just WAY oversized t shirts when people were around and nothing when I was alone. It took a long time but I essentially just made myself get used to clothing again by forcing myself to wear it. Gradually I went from being able to tolerate only a few minutes of it to now being able to tolerate the clothing all the time...can even wear a bra again most of the time now. The clothing helps to protect me from other things (like the weather) which flare up the RSD far worse than the clothing itself does.

I would just caution you against too much protecting of the RSD areas. The more you avoid wearing things and over protect the limb...the worse it will get. It took me a long time to get used to wearing normal clothes and stuff again but it was well worth the effort because it was the start of me feeling "normal" again.

Cold weather, rainy weather, weather changes...they all kick my butt. Fortunately...heat does not bother me...it actually makes the pain feel a little bit better. I have found that wearing Columbia Omni Heat baselayer clothing is a big help to me because it is not heavy, but helps protect me against the cold. I buy it a size bigger so that it is not tight on my skin. I also have tried really hard to find things that can give me some warmth and protection without the weight of heavy/bulky clothing and jackets...my dad got me a wonderful coat for my birthday that is lightweight down but very warm (which I need in this crummy Chicago cold).

Don't know if any of that helps...but if you can try to gradually get yourself used to wearing clothing with sleeves and stuff that will be the best long term. I know how painful it is...but I looked at it like it was part of my physical therapy and I went through the motions of trying to get used to these things every day. I would watch the clock like a hawk waiting for that 5 minute mark...then the 10 minute mark...until months later (and it took months) I could wear normal clothes all the time. But I had to get rid of most of my old clothes...and I am very picky about the texture of the clothing so that it doesn't aggravate the RSD. But it's worth the effort if you can do it...just don't expect immediate results.

I am so sorry that you are suffering so much. Take care.

Hi I just skimmed the responses but a few thoughts
I also have issue with being able to tolerate fabrics,weather,etc. For awhile I wore no socks because of it and still can wear certain kinds. I had to reintroduce them slow and sometimes for ex I will be wearing one sock on and one off. Maybe try different fabrics and weights too make a difference. Also slowly try it for even a few minutes at a time.
As for feeling along I can very much relate. I am not as young as you but can imagine how even younger people can't understand. I think if you can focus on the people who at least try and reach out to them it can help. Even if it means an hour going with a friend on a better day for lunch. Are you or can you go to therapy? It obviously does not take away the pain but it can help to cope and get the feelings out. Have you looked for support groups?
If you want an email buddy I am here too. Stay strong and hopeful

Hello Catra
 

I hope and pray that someone has seen you for the RSD, and that you are getting pain help. Nobody should have to suffer like that alone. I didn't know how to answer your post, as words are so useless in the face of suffering at times. I have had PN so I have a small idea of what you go through. Let me know if there has been any relief provided for you. You have all my empathy for the condition you have. I do care about you and wish this awful illness has some solution for all RSD sufferers. More needs to be done about this in the science field. ginnie

Thanks ginnie...though I feel like I am actually doing pretty well with my RSD and am one of the lucky ones that does not feel so alone. My family and friends have been incredible and I have made so much progress from where I was last year to this moment in time. My post quoted Kheldar's post...which is probably the shocking one. So much pain and so little support...it just isn't right. No one should have to sit by and be treated that way by ANYONE in the medical field. There are things they can and should be doing to try and help...even if it's just meds and therapy. I do not understand how so many people can treat someone who is already suffering unimaginable pain so badly. I can't even imagine how hard that would be to go through...and I hope and pray he gets some relief soon.

Hey Catra
 

I have that empathy that you do. I hear these posts of people who are in pain, and then they get dismissed by their doctors, or arn't getting any support. It outright makes me angry! I am glad to know you have support. I do too, that is why I try to reach out to others. I talked to granny this a.m. she was dismissed and told more or less, it's in her head...I don't think so., we don't go trapsing around these doctors offices for nothing. I sure can think of a lot of other things I would be rather doing!. I think they just patted her on the back and sent her out the door. I wanted to throttle her doctor, and the nurse was worse! This RSD that I am learning about scares me as I have this pins and needles feeling extening up my ankle to my lower calf. I have severe ankle and toe joint problems. In the back of my mind there is a little panick that this is becoming worse. I am to have the toe joint replaced, but the ankle replacements are another story. That surgery is still in trials. I am wondering what I should do. The RSD can happen, and I know you suffer from it. I have good friends and I have this site for support. I am ever so grateful to meet the people I have from this site too. Have a good day catra, and I hope you have less pain today. ginnie

Dear Kheldar,
First off I have to say (just to make you smile a bit) that I absolutely LOVE your little avatar stating "the dog started it." It really made me laugh. Thanks for that one. I am so touched by your posting. AND I am soooo annoyed and ticked off at the doctors you went to see. They are idiots. Have you tried seeing a neurologist yet? They are the docs we should be seeing because they deal with nerves. That would be my first thought for you to get to a good one that can help guide you.

Then you said (what really got me mad) "So here I am, back at ground zero, exactly as I have been for 25 months: alone, in excrutiating pain and told NO. So tell me what's good about this... I can get drunk daily [but at least you have a bit of humor left inside you which will help you in the long run], that is my only pain relief I have. Typing doesn't help, it makes it worse." I get real annoyed with doctors when they can see with their own eyes someone in alot of pain needing help...and do nothing but pass you along to someone else. May the Lord bless them with RSD (even just for a day) so they can see the real torture we all go through with this monster. If their loved one was in our situation they would be jumping at the bit to help them. I don't know where their ethics go some days.

I want you to know that you are not alone...you have all of us here!!! I can most definately say most of us (if not all of us) have been in your shoes at how we have been treated. Heck, I was treated like a drug addict when I got to the ER once and they left me in agony for hours and I began crying from the pain. They just left me. My sister and mom came in and oh boy the doctor was so concerned and caring in front of them but to me he was crap. Once they showed up, I immediately got meds when my family saw what was happening. Another time I was in the hospital and had my entire body moving back and forth from the spasms. I called the nurse and she gave me a tiny amount of pain med and it did not take hardly any of it away and I worsened from the pain (and they never would come back to see me). I had to get my roommate (who had her leg just operated on) to call my sister at her home and have her call the nurse's station to speak to a doctor and have him come in to see how bad I was. He walked in the room and his face just dropped and he gasped and ran out and got me something for the pain and to stop the spasms...it got so bad I was sitting up and lying down uncontrollably! Then the LPN comes in and says "You can't call someone to have them call here." And proceeded to yell at me. Well, I told her to shut up and to get out of my room that she had no idea what she was talking about. Boy did I feel good after that one lol. They listened alot more after that incident. Would it be possible for someone else as your advocate to go with you. It seems doctors take it more seriously if someone else is there I guess to witness what they tell you. I am always by myself and I have seen a real difference in people when others are with me...it is like they know they can't give you any crap. Good luck and let us know how you are doing. Hang in there. We are all here for you for support, sympathy, or just a shoulder (or should I say laptop) to cry on.
Stay strong and don't let anyone underestimate you.
kathy d