I need advice and to vent
 

Hi,

I am 21 years old and have been dealing with RSD/CRPS since 2001. I got it from complications from surgery. I have gone through every time of medication and every type of therapy to try to relieve pain. Long story short, nothing worked, nothing helped and my last option was to go to an impatient rehab just to teach me to live with pain. Out of a scale of 1-10 I am consistently no lower than an 8. CRPS is in my left ankle. I have lost alot of mobility, I cant run, I cant jump, I live with an ace bandage 24 hours a day 7 days a week, 365 days a year because it is so hypersensitive even the airflow kills me. I can only wear flip flops and I have found steve madden shoes that do not irritate my ankle. I have been harrassed by several employments because of the shoes. I even lost a job because I needed to wear sneakers, even though that was not told at day of hiring, or the first 3 days that I worked. I feel like I am loosing my life because of this. I have my bachelors in Criminal Justice and I dont even think I will be able to find ajob because of the shoes. I feel like the people around me are getting aggervated with me (dont get me wrong, my family and boyfriend all shake their heads in support.. .but I feel like it is false) I just feel so lost, alone, upset, frustrated, disappointed and anything else near that description. :(

Hi there!

Here is a type of shoe that looks dressy but is very good for foot/ankle issues:

http://www.arcopedicoshoes.com/classic/index.html

I use the first choice in black for dress occasions or work.

Many places online have these and today there are many types.
You can find one that allows you to use your ACE wrap, I think.

I have neuropathy in my feet (similar to RSD, but not as acute).

Good luck!

Why don't you join us here?
Stay.
Read other's stories, you won't feel so alone and lost.
I've had RSD since 83, and it's full body.
I cannot begin to tell you what to do, at this early stage,
but many of us here can.
(full body is just different than partial body, I'm not saying it's worse, just different).
I can't imagine, having one part of my body that is so "different" than the rest.
right now, I simply dislike my body, because of the aggravation it causes, it's simply a "carcass" that I'm trapped inside of....

But, you'll learn much here from the others, what can help and what doesn't, we've all made mistakes.
You're very young for this.
And, my heart goes to you...
:hug:

Pete

Hi FatCat,
Just like Pete I have mostly full body RSD. The only exception is my torso and left side of face. I feel for your pain. I am sorry to hear you are suffering from RSD at such a young age. I might be wrong about this but I thought that if you provided your employer with doctor's documentation of a medical condition they couldn't fire you. Just a suggestion, you might want to check a Americans with Disability site.
Please hang is there and keep reading this site. You can find a lot of good info here. I have found it helpful to just have people to chat with or vent to that understand what I am going through for the most part. My family also are trying to be supportive but RSD is so hard to understand and explain.
Welcome to the site!
Hopeful:hug:

Hi Fatcat,

I had a lot of trouble with shoes on my feet at work, too. And with people understanding me.

My feet started to hurt in my shoes during last winter at some point. I needed to wear suits at work, but I tried to keep my sneakers on while I was there if my feet were going to be under my desk all day. But towards spring time even sneakers were bothering my feet. Now I am on a leave of absence from work and all I can wear are Crocs. It's great that you got another suggestion for comfortable shoes form Mrs. D above. I hope they work for you.

The best place I found for info (other than here) was the RSDSA.org. If you join the organization they will send you a package with some good info that you can share with your family. I know that it helped my husband understand what I was going through. The fee to join is $20-$25 a year.

Good luck to you, Sandy

Dear Fatcat,

RSD/CRPS, is a frustrating neurological disorder/disease, that we deal with as it effects/affects all areas of our lives. Sometimes, it is a lonely existence having this culprit in one's life. I think we all have felt like that one time or another.

Pete, mrs.D, hopeful, and Sandy gave wonderful insight and information to you.

I found that since having RSD/CRPS, I have come to know myself so much better. Being in constant pain, my faith and ability to hope,as well as cope, has been tested. I also questioned the loving support around me, and now I understand that was more about me questioning myself (denial) concerning RSD, then it was about questioning the support from family and friends.

Welcome to the group. You are amongst friends and people that understand your pain and frustration. Also, these same folks understand that keeping active is the key to success. Reach out and you will find support and friendship,here.

http://dl6.glitter-graphics.net/pub/...epg6adatet.gif
:hug:
Dew

Hi. I can relate to the shoe issue. I wear Nike walking shoes every minute I am up even when I go to the bathroom in the night. Other shoes and let me tell you I have tried many cause extreme pain and walking with no shoe is impossible. I too hope one day to be able to work and this is a concern. There are some shoes by Merrel that look like they have strong support but come in like black or tan so looks more professional.With those they have strap ones that are not enclosed but not quiete like a flip flop. My mom said Clark makes one too. I know for me anything takes time to adjust as I am so sensitive. There was a time I could not wear socks for the ankle/foot pain and now I can but getting to this point was filled with tears and extra pain. I am thinking it is the same with shoes. Even when I switch to a different walking shoe I end up in a flare up. On a side note and we are all different so talk to your doctors but ace bandage to me would increase the pain in the long run. Now I understand about air because it used to feel like a gun shot to me with a wind blow and I still hate it but it is less sensitve. I used to wear an airboot in the start of this and it actually made my rsd worse cause it did not allow me to be mobil and I wonder if the ace bandage is making your range of motion more limited and in turn increases pain. Now again please follow your body and needs and I know how it is a catch 22 but in the long run I am thinking. Do you have a pain doctor who is working with you and are you on meds/treatments? Very key. I understand feeling alone and people not understanding. My only advice is to focus on the people who do and that the people who are hurtful have issues they take out on you. If you want an email buddy I am here too. Many thoughts for better times ahead

Fatcat.. Hang in there
 

Fatcat... You come across loud and clear .. Along with suffering with RSD one of the hardest things is to fight the lonely, scared part of this illness. You are in the right place.. Rely on the support of your friends and family, and this web site... they do care.. It is just your/our life has become more of a challenge for us RSD'ers. Try to look for poisitves in your life, when you feel sad and alone... ultimately rise above your fears and know that others in your life want to help, it's just hard for others to relate to what we feel and are going thru. Take home message.. you are never alone in your desperation.. we have to recongnize our saddness and feel free to openly talk about your feelings or journal them, that will help!:hug:

A relative on mine had back problems and likes Clark shoes. I like almost all of the styles for men and many of the styles for women. I have some of the shoes myself and really like them. I can wear them all day.

Hi,
I'm 24, I understand your feeling that this is "ruining" your life. When I find myself feeling very down, hopeless, like no one really cares or gets me, I find a way to be around kids. I have a niece, nephew, and a little cousin I find I always feel better after being with them. They don't judge me, or give me the fake "I understand" when you know they can't. They are just kids! They have fun and giggle for no reason, with in a few minutes I'm laughing and forget about my own troubles. It may be a temporary fix but for me after seeing them I feel almost refreshed like i can deal with thing on a more even keel level.

I hope you find something to help you. Also as other have said stay here join the community, here no one judges you they just try to help. It's a great wealth of knowledge, support, and truly caring people.

best wishes :hug: