Hi

I just need to vent. I am so tired of the pain, as we all are. I have been going to physical therapy. I don't feel like anything is getting accomplished with it.
Then I have people (so called friends and family) that think this is not real and how can someone be in this much pain..

For one day, one hour let them live in my body. I can not believe how my life has changed from this. The more stressed I get the worse it gets. My pain med's are causing some mood changes but the doctor said my options are limited for pain med's.

I feel like I keep hitting a dead end. So many of you are brave and have been dealing with RSD for a long time, I know I shouldn't complain, I'm sure there are people much worse than I am.

Thanks for listening.
Summer

I had a very interesting experience earlier this year. I was at a family brunch, "getting by" as I usually do. Even though I have had RSD since '86 I don't think they ever really understood what RSD is all about.

All of a sudden, I had one of my sudden sharp shooting flares, followed by such overall pain I could not finish eating, nor could I drive home. This was a real eye-opener for most of my family. They had heard me say in the past "I am having a bad day" and so on, but they never really saw me in such pain. My RSD has gotten much worse in the past few years.

For many people, especially my brother, they finally got an idea of what I was going through. I am not necessarily happy with what happened that day, but I think they could finally see first-hand that I wasn't just complaining about a "little owwie" like a persistent back ache.

There is no suggestion here, just a story that I think relates to how people have a hard time understanding. This condition often has no outward appearance (except for extreme cases that include neuro convulsions). This makes it hard for people to see that there is something wrong. I truly believe that most people are not being mean, but that they cannot believe a "hidden condition" like RSD could hurt so much.

Let's face it, most doctors we run across don't know about it either.

Hugs

Mike

I am so sorry that you are going through all of this, Summertime . I totally understand how you feel, I have been feeling like this for a few days myself. Please don't ever me sorry for venting, you are only human and we all need to let things out every now and again.

I am so sorry to hear that your friends and family aren't understanding. Mine are the same, my dad is been a real jerk at the moment and is being nasty to me and my mum. My mum wants him to leave and he said he would but only if SHE gave him some money, legally my mum has to support me and nothing in the house belongs to him has he hasn't bought it but he doesn't see it that way. My grandparents (his mum and dad) are exactly the same also, they don't understand anything to do with this illness and never get in touch with me now. I have lost all of my friends. It is awful how this disease can just destroy so many lives. Please know that you are not alone and that if you ever need to talk to someone, I am here because I do understand somewhat. I really wish I had some answers for you, but unfortunately I don't has I have not found anything to make my family understand. I hope your family see sense soon and realise what they are missing out on and that you need them now more than ever.

Am sending you many pain-free hug and hope you feel better soon

Love, Alison

for you Summer!

Most people don't understand at all. Things are hard enough on us without the added stress of disbelieving family and friends. It's no wonder we feel so isolated...we are!! My family is the same way as a lot of others. My dad doesn't understand and told my hubby he'd better "watch" me cause I'd just get addicted to the pain pills. *snorts* Yeah right!!

As for people being "worse off" than you....ummmm....I suppose in a way there are but I think when it comes to rsd that we're all in the same boat. None of us are "worse off" because we're all dealing with the same horrible pain. Some of us just have more body involved than others but I don't think that makes me worse off than others. It's all challenging no matter how much or how long. You are strong and brave too, you just don't see it yet.

Vent anytime you feel like it, it's what friends are for.

Hugs,

Karen

Summer,

I cannot state strongly enough how important it is to stay away from the negative results of stress. It will totally consume you if you let it, and that only makes your pain and suffering worse.

We are all here for each other, and certainly understand. Don't worry about venting, we know all too well where you are coming from. We all feel like we are at the end of the rope from time to time, but we pick each other up and keep on going. All for one, and one for all.

Take care of yourself!

EJ

Hi Summertime,
You are going thru something that those of us who have RSD understand. No one could possibly imagine the pain and life altering complications RSD brings. Like someone already mentioned, public awareness of this is definetly not what it should be, including Dr. awareness.
Going thru physical therapy is so very difficult, so painful. Do you have someone to drive you to therapy? I always took pain med just before, as it was torture. My daughter was in high school and took me and brought her homework to do in the lobby. I never let her come back to see, as it would seem so cruel to watch. There is a pain scale, called the McGill Pain Scale, RSD is way toward the top, I forget the number. I'll look it up for the forum.
I know we all are different in ways, but especially if there is a loss of range of motion, it's so important to stay with the PT. Obviously you want a therapist that is experienced in RSD and does no harm. I'm so glad I can use my arms now and part of my left hand. Please stay with it, if you feel you can. I got my insurance company to agree to an hour of massage therapy just before the PT. Normally, they don't pay for it, but they wanted to operate and I didn't want that-didn't know at the time it was RSD, but because I got it the day after surgery, I was scared of more surgery. So, cost wise, it was smart on their part to agree to the massage therapy instead of costly orthopedic surgery.
I'm so sorry, my memory is so bad, what part are they working on? I remember PT warming up my shoulder for about 10 minutes before working on it. I still use the long bean bag type thing you can put in microwave with velcro straps. They are about $10 at the mall. It stays warm quite a while and is penetrating. If fact, I just used it.
Summertime, hang in there, my Dr. just changed my anti-depressants from two double dose ones to Cymbalta, I can't believe how much better this one is for me. That deep depression I've had for so long, is nearly gone. Maybe being able to cry is helping, and maybe the counseling and adjusting to this life changing event is helping.
It does really hurt when friends, family aren't understanding and compassionate. Some people just aren't emotionally available and distance themselves.
Know that we all care and it's ok to say whatever you want. I think it's like journeling,
getting out your feelings and the pain you are in to us help. We are just glad we can all express ourselves to caring friends.
Hope you can feel some peace and comfort. Loretta

Karen has it right. Stay away from the negative for now. The stress does make the pain worse. Also I got better with Meditation and Prayer. I have a Dr. that has taught me Meditation. It helps you to relax.

My daughter once told me I just needed to get out more. That was when I first got it. She's now my caregiver so she has learned from being around me that it's hard to keep going at times. They do finally come around I think. The ones that don't, give yourself some space from them and also remember you know your body, they don't.

As far as PT. I believe that you need PTers that know something about RSD. I had 7 different ones while I was in PT and only 3 of them knew what it was and how to deal with it. I don't believe in that old saying " no pain, no gain".
You see it on here from people who have went to the agressive PT and it seems to make things worse. If we were able to lift weights or ride an exercise bike or a treatmill, it seems to me like the PTers and Drs. would think we could ride a bike and run a mile without them. We can't.

Give your family and friends time to figure out where you are at in this. Some will come around.

Let go of the stress that will help your pain subside some.

Ada

Summer, I am so glad you deicided to share "vented" with us. It helps us all. We all have the people in our lives , some more than others, that choose not to understand this. I used the word "choose" intentionally as I think it is a choice. I've come to believe they do get it. they just dont want to believe it as it might require some compromise from their life.

My husbands family lives near us with in a mile.
When I was told I would not be allowed to drive any longer(due to meds and spasms), a devesting development,
I sat down with two of the family members and simply said, I am no longer allowed to drive, I was hoping when you go to the grocery you could give me a call so I could pick up a few things.
I have never been called that was two years ago and they live with in a mile.

These are people i had a great relationship with before I was ill. I remain in shock at how little 6 people with in a mile of me have been willing to do to help me. My husband travels and is gone 90% of the time. I literally lived on Special K once for a month. Sounds pathetic but its true. Yes it is very had for me to ask for help, but every time I have -I havent gotten it. so, thats the way it is.

I did want to agree with what Karen wrote, it does not matter if you have full body rsd as I do, or rsd in one limb or one arm, it is just as dibilitating. Constant pain, whether full pain or one limb has the same effects on ones life.

I guess Ive become cynical but I believe most people dont want to get it, and yes it really hurts, its lonely out here. Hang in their Summer.

First Thank you everyone for your support..

It's amazing and sad at the same time how we are all in this same boat.
My husband and kids are caring and are supportive but they are human, it takes it's toll on them as well, they want to see me better and want to help but don't know what to do.
They do a lot for me. I can not walk up and down stairs, my leg gives out also, I can not drive because I lost strength in this leg, I developed atrophy as well. I feel so guilty they do so much for me. I was so active before this. My RSD started from surgery, it's in my right leg (the whole thing now) it goes around to my butt at times it feels like I'm being burned with a hot skillet. All I did was go in for surgery and the doctor damaged the nerves, as soon as I woke up from surgery I was in tears, the nurses were mean and told me "you just had surgery you are going to be in pain" I've had other operations and never did I have this problem. As days turned in to weeks and then into months and now years the pain got worse and worse, and here I am... and
My mom doesn't understand how someone can be in this much pain. May be she doesn't want to believe it, I know it has to be tough on her also to see me sick. My other family members I might well forget they are there, it really stinks.

I've tried to cut back on my pain med's because they are making me very moody. I do notice the more stressed I get the worse the RSD is.

PT is showing some progress,very little actually. I pushed it too much the other day and I am paying for it. I am still hurting, I think I made things worse. I don't believe in the 'no pain, no gain"....We are told pain is sign that something is going on, to pay attention to it. I had a doctor tell me pain was a sign of weakness...

I don't think many doctors are familiar with this and when you start telling them what you have, they look at you like your crazy..

How do you adjust to "your new life"? I'm beating my self up over this, thinking I did something really bad to deserve this.

I was going to try to reply to each post but I was getting confused going back and forth. I'm sorry for how people are treating you all.

Thanks again for sharing your life with me and giving me support throughout this miserable journey.

I'm here for all of you also.

Summer,

I can tell you one thing right now. Don't spend time beating yourself up and wondering if you did something to "deserve" this. No one can control RSD or none of us would have it. You didn't bring this on yourself or any other such thoughts you may have.

In life, things sometimes go wrong, and RSD is one of those things that can happen. Many different things can trigger this monster, but do not waste time dwelling on the negative.

As for adjusting to "your new life" try to make the very best of a bad situation. I'll be the first to admit that I was initially in denial about the effects of RSD, but a wise doctor told me to accept the fact that this is a life altering experience. His statement was tremendously helpful to me because I was stuck in the thought that one morning I was going to wake up and everything was going to be "normal" again. Nothing is impossible, but I now am content to work with the hand I've been dealt.

To this very day I continue to strive to get better and keep a positive attitude. The only difference is that I stopped living in the past and decided to embrace the fact that I see small victories in every improvement in my condition. My faith helps me see the glass as half-full instead of half-empty, and there is a big difference!

Hope this helps you.

Take care,

EJ