I am new an confused. Yet I am here! So much I don't understand an so much I am afraid of. I have 6 kids only 2 left at home in their teens. Husband of many years divorce me. I just want a ticket back to the way things use to be. I know that isn't going to happen I was at work feel in a pot hole an broke my foot. 4 cast later an giving up on the Doc,I decided to go to another Doc. He knew right away. He said the 3 word "RSD" I had not a clue what he was talking about. He explained to me. I haven't walked in 7 months. I go to PT 3 times a week. Skin is always a different color. pain an cold. I am just scared since it has cause so much pain in the foot an now in the calf an leg if it is going to keep moving. I have no clue what kind of Doctor I am suppose to see. My family Doctor seems to have the knowledge. She see's others. I am tired of test an Doctors. Yet I keep on going. I get tired real easy an cry a lot.
I don't know what the future holds for me. Will I ever work again? Not in the field I was. I was a health care provider. Meaning Caregiver an loved it.
I just wanted to share a little about me. I don't like people to see me. So I stay in as much as I can. I know there is a whole world out there. I'm not ready for it yet. Thanks for listening
Sincerely,
Lisa

One Dr. a lot of people see here are Pain Management Doctors. Also Anesteologist do blocks to help try and get it back in remission. Find out how much your family Dr. can help you also. My PCP does all of my care. I just got tired of going to PM and Neurolgist that don't know anything. I finally just ask him if he'd deal with it. I also bought him Dr. Hooshmand's RSD book for Christmas one year. He used it. I do have a good Anesteolgist that does blocks and I've had some that helped.

As far as getting out. I am doing better but I don't get out much. I just think it's part of the RSD. It brings on depression and that too keeps people from getting out much.

My daughter is my caregiver and she takes care of a lady with MS. She loves it. She went from teaching to caregiving.

Hope you get the help you need and you will get a lot of answers here.

Ada

Hi Lisa! Welcome. I think most of us can relate to exactly what you ae saying.
Please don't be afraid to say how your are feeling because I can tell you someone or ones on here will be or have been in that same situation. Although RSD/CRPS effects us all a bit different you will also find a familar thread. I had a right shoulder injury in July 1989 and was DX'd with RSD, now spread to full body. I too have been through depression and still struggle a bit with it now and again. My life isnt the life I had before, but it is a better version because this has taught me what priorities really are in life. Welcome to the group and I look forward to getting to know you better and seeing you around. You will find Neurotalk is a great source of information, support and gives you a chance to learn of others personal experience on this journey to recovery.
Many blessings Di

Lisa!

Lisalisalisa!

One big, warm, tight, hug, handshake and howdy, moose-size welcome to the site. This place is amazing!

I've got MS and only know RSD from what I've read here. You've done a great first step in identifying the problems and asking for help because,

You are not alone.
You are one of us.
And we are here to help.

Dear Lisa,

I want to go back to way things were, too. All I want is to get better. I can SOOOO totally relate to what you mean when you say that.

Have you tried seeing a pychologist or phychiatrist? Many people on this board say that it helps if you can find one that works with pain patients. They can give you special strategies for dealing with your feelings of isolation and loneliness. I have also read that there are some that teach meditation for pain sufferers.

One of the (many!) medications I take is Cymbalta, which is an anti-depressant. It has helped me a whole lot with my depression. Many of us take anti-seizure and anti-depressants along with other meds for pain, spasms, high blood pressure, etc. that the RSD causes.

I can also relate to being tired. I go to bed embarassingly early every night, and on weekends can sleep 12 hours straight. I think it's good for us to sleep a lot, our bodies need time to heal.

If you scroll through this board you will find a lot of really good info. You will also see that so many of us are often where you are now - you are not alone. Even though we are different in the way that RSD manifests itself in us and how the different meds work for us, most of us suffer from the same feelings of isolation, fear, pain, etc. that you are now experiencing.

I hope this message makes you feel a little bit better. Take care of yourself,

XOXOXO Sandy

Hi goodday,i wanted to say keep your chin up. i have had r.s. d. for 15 years. i pray for you and your family. if you ever need to talk just let me known god bless kim

hi and welcome
i have had rsd for 11 yrs and its full body.. i know how scared and mad you are. i was 16 when i got rsd. and had no clue what the future held for me. Pain Managment doctors are usually the best for treatment or someone that is very knowledgeable with RSD and treatments . have you started any meds or anything.

and yes depression is a huge part of rsd. we all struggle with it and its hard to go from a normal healthy person . to who we are know. but i have changed my life to fit around RSD . i do things differently and somethings i still cant do.

hang in there we are always here for you .. stick around it really does help to talk to others that have this ..

carrie

I've had RSD for 13 years (14 years September 21, 2009). Don't despair. Go see a pain specialist now and get some help, not later, now.

Let us know what happens.

Lisa, I so understand how you feel. I still mourn the loss of my job. I loved it so much. I was a courier for the company with the big white trucks not the big brown ones! I had never been more happy. I can tell you it gets easier but you may still miss it. I dont cry everytime I see a truck anymore. I will tell you I am not working. I will proabably never work again. I am only 38 years old. I take way to much meds & have to many days that I cant leave the house to hold down a job. That doesnt mean you wont bet better than me. It took me a long time to get a correct DX. ANd they think I may have had RSD in my hand only for 18 years & that it spread after my carpal tunnel surgery. I had a old previous severe hand injury. But people caught early like you have a better chance of turning things around. A counselor can help with how you feel too. I have that an a psyciatrist. All the adjustments are too hard on your own. I hope you find some help here too. Talking to people that are either where you are or who have been there is comforting somehow. I always feel less alone. Even though you wish no one was going through what you are. Take care.
Hugs, Denny

Hello Butterflylisa and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I am SO sorry to hear that you have RSD also and really hope that things start improving for you real soon! I have RSD in my left leg, right arm and possibly left arm also (although it is still to be confirmed by my PM Doctor although the PTs believe it is RSD as I have all of the same symptoms). I developed RSD when I was 12 years old after an ankle sprain and am now 14. I have tried all sorts of things to try and make it better but nothing has helped so far and we are looking into other treatments as a last resort.

I can totally relate to not wanting to go out. I spent many long months just laid in bed because I couldnt cope with facing the world and being "different". It really annoyed me when I used to go out and people would just stop and stare at me because I was in a wheelchair and couldnt walk. I go out quite a lot now but it still really frustrates me when people stare at me just because I look different. I guess I have learnt to try and 'cope' with it better now though and dont let people bother me too much. I went onto an Intense Physical Therapy Program and that really helped me - it hasn't improved my pain or anything like that but it made me realise that in order to try and overcome the RSD, I have to go out and do things. The PTs explained to me that I am in pain whether I am sat doing nothing or doing something so I may as well try and do something and it really made sense to me as I never thought of it like that before - I think a lightbulb went off in my head then. I still have a very hard time going out but I try and force myself to go and do something fun - even if I have to pay for it afterwards!!

I'm sorry to hear that you cant walk at the moment! That really upsets me as I KNOW how hard and frustrating that is! I spent 13 months wheelchair bound as my legs would just shoot out in front of me and I had no co-ordination in them. I am just now starting to walk again and can walk short distances but still have to use the wheelchair long distances.

Have you tried doing exercises with ankle weights?? They really helped me and were the exercises that got me walking short distances again - my walking is no where near perfect still BUT I can walk short distances and that makes such a big difference!! I still have the exercises so if you would like me to PM them to you, please let me know as I would be happy to do so!!!

Please dont give up hope!!!! I KNOW it is extremely hard at times but without hope, we have nothing!! One thing that I try and do when I am feeling really down is concentrate on the things that I can do instead of the things I cant - its hard at times but it does seem to help a bit!! Do you see a Psychologist? They can be really useful in helping you come to terms with illnesses and prescribe meds that could help you - I actually want to be a Psychologist when I am older and am going through a program at the moment that should help me get a job in the health and social care society if I get accepted!!

Do you see a Pain Management Doctor?? They are usually the doctors that treat RSD as they can prescribe meds and do nerve blocks etc. It's really important that you find a doctor that knows about RSD and doesnt just pretend to. Dont ever let your doctor force you into doing anything you dont want to either - its your body and you know yourself better than anyone else!!

As i've already said, please dont ever give up hope!! There is always research going into RSD and different medications available to try and help you cope with the pain and other symptoms.

Take care of yourself and if you ever need anyone to talk to, please know that I am here for you because I DO understand some of what you are going through!!

Alison