[bedison]

Hello everyone. I broke my ankle 7 years ago. It was a big mess and went thru alot of pain and tests. The doctor did find that I RSD but he didn't know very much about it. I had to get on the internet and research it myself, print it out and give it to him so he could figure what to do next. Well, my husband was offered a job in a different state and we just couldn't pass it up so we took it. We have now lived here for about 5 years and I am having a hard time finding a doctor to help me. I eaither get told they don't see anything so they can't help or they won't help me because it was an out of state surgrey. I am just worried that I won't be able to find any help before it gets worse or something else happens. My ankle and the bottom part of my leg is always swollen and now i have a bruise that won't go away and it's so sore. I even got a big knot and bruise on the bottom of my foot but of course by the time I went to the doctor, it was gone. I did show my normal doctor that bruise (that won't go away) and she said I will be fine, (it's a veracouse vein)(spelling). I guess you can say I am depressed now cause I cry at everything. I am also getting more migraines and a lot worse then they were a few years ago. I can still barely touch my ankle and the lower part of my leg. But the one thing is that at night when I lay down and try to put the covers over the lower part of my leg, it makes it itch. So I go to itch it but I don't get the releaf like you would when you itch your arm. It feels like I have an infection inside and I am releaving it by itching it. Does that sound weird. I just had to join something like this so I could talk to someone else who as an idea what I am going through and feel. My husband is my biggest supporter and at times I think my only supporter who trys to understand. I am now starting to feel other things hurt and I am sure it's due to the way I walk. My back is always hurting and at times it feels like a nerve is pinching and the pain goes down my bad leg. Sorry I just had to write this down and I guess vent some things out.

[RSDgal]

OMG!!! THIS IS INSANE!!! What state do you live in?! Let's get you some help!!! What the hell is wrong with these people? OF COURSE THEY DON'T SEE ANYTHING!!! YOU CAN'T SEE RSD!!!!

I don't know how you are even functioning!! However, the only other thing that stands out, is the itching part. That also sounds alot like RLS or Restless Leg Syndrome. Check out RLS via google and see what you can come up with.

Also go to RSDS.org and see if they can be of some help to you. I have gotten some really good things from there.

The other part of this is, "YOU HAVE TO BE VERY AGRESSIVE W/YOUR DOCTOR!" This is no time to come across as timid and say, "Well, I have this problem. Another doctor said that I had RSD." This shows that you are asking for the new doc's opinion and diagnosis. You go in, sure and confident of yourself and say, "Hi, I just moved here. I have RSD. Is this something within' your treatment parameters or can you refer me to the nearest pain clinic?"

Since it sounds as if you have already seen a Dr. where you live, start fresh and find a new one...just like you have never seen anyone out there yet.

If you sound like you are questioning YOU, then they most certainly will.

OK? Hope this helps.

{Hugs}

Your friend from Hell :0)

RSDgal

[mrbnsn]

Getting help is key. What state do you live in. I know a very good pain specialist in San Rafael and offices in the Bay area that is CA. let me know if you are in this area? The dr.'s name is Dr. Schofferman. He is wonderful. Sensitive. Straight forward. And helps you feel like you are not going insane. He is listed in the phone book. i dont have his number right in front of me. Let me know. But get some help. I'd be lost. good luck.

[bedison]

I use to live in southern california, that's where it all started. We now live in Oklahoma and finding a doctor that will help is like pulling teeth! I am going to another doctor in a few days so we'll see how this one turns out. Now that the wether has been changing, I have been in more pain.The first couple dr.'s I have seen took one look at my records and turned to tell me that they couldn't do anything for me. I did have one doctor work with me a little but there was a few things he had said that we did not agree with. He also couldn't explain all the swelling,bruising, loss of movement, pain,etc. I think He was more worried about my toenail, which he removed half of it and now I get pain in that nail, feels like someone is trying to rip it off or if you ever had fake nails and ripped one off, that is what it feels like. I just hope this other doctor will listen to me and really look my leg over. I got some serious bruising on the inside, to the point it hurts when I walk. I just hope she knows something about this RSD, the other doctor only knew about things that I have already done. Thanks for responding back! Sure is nice talking to people who understand a bit!

[bedison]

Well, I finally went to a different doctor and she was great! She sat down with me and listened to what I had to say. The nice thing about it is that she knows and heard of the RSD! She is willing to try and help me get it under control. Since this RSD is in my left foot, I have been walking funny ever since I started to walk again causing other problems, like pain in my hip and back. The first step is getting xrays and we did but won't know until I go back to the doctor. She also did blood work on me since she did put me on meds. Now I got a question...Has anyone heard of taking Cymbalta for the pain? It's also used for depression, so I am taking care of 2 things at once! My doctor had said that there has been a new study and Cymbalta was found to treat the pain for RSD. I just though that was pretty interesting since I haven't heard that before. Of course it does take a few weeks to work but I am keeping my fingers crossed that this will help me get some things back on track. I would go walking during the day since that seemed to help with the swelling and pain but lately I have been in so much pain, not just my foot but other parts too, that I couldn't make myself go. I know pt plays a big roll in controlling the swelling and pain, for me that is, but kinda hard to do when you hurt so much. I just don't want to be in pain anymore and get out there and play with my kids. I have 3 kids, youngest is 4 yrs old and I don't want my kids playing video games all the time. I want them outside playing, getting dirty and being active but the most important thing is that I want to be out there with them having some fun with them.

[mrbnsn]

Southern California diffenately had more options for help for you but moving is sometimes necessary. I recognize that you feel helpless and for good reason. ALL the symptons you are describing are RSD. Have you visited RSDS.org. They have alot of information that may help. Also, forgrace.org. I wish I had some wonderful advice to give you that would set you at ease and give you answers. But I just dont. The worst part of RSD is that you feel crazy. You think all these symptoms cannot be from one disease. One condition. And WHY cant they help. Help is hard to find. Empathy even harder. Search for dr's in your area that know about RSD. Go to a PAIN dr. I know there are a lot of procedures, tests, and invasive therapies. Try to stay away. Even a needle prick can make your life more difficult. Please check out the sites. Know that you are not alone. Know that you are sane. Know that the pain is real. Know that the ANXIETY you feel is real. And most importantly always stick with your gut instinct. Never allow a dr. to perform any procedure on you until you are absolutely sure and ready. You are in a difficult situation. And all of us who have RSD understand that place. Never give up !!!! Keep fighting !!!! and know that you are not loosing your mind. Try to stay calm. Try to stay in a peaceful place if that is possible. I know it is hard. Get help. Dont quit. Dont ever quit. Even though you may want to most of the time. Stay "in your envelope of load acceptance" as much as possible. This means stay where the pain is at its lowests. Do gentle stretches to keep your muscles moving, try to stay in lean shape if possible, keep moving your body. AND know you are not alone. All my prayers ..... best of luck at your dr. appt.

[mrbnsn]

Hello again...i have not heard about Cymbalta for RSD pain. I do know that anti depressants can help with the pain. But what help are you getting in the time before they actually start to work. Are you getting any help for the pain which is very real. I cannot imagine how difficult it must be to have such young children and RSD. But you will get through it. The pain is hard. It affects so many aspects of your life. I hope you can get some immediate relief. Maybe you should try to get some help for the pain that is happening right now. In three weeks maybe it will be better or who knows. But I do plan on asking my dr. about Cymbalta for RSD pain.

[rsdinfoot]

I also have RSD for 9 months after ankle surgery. I'm receiving physical therapy from a RSD specialist to work on sensitivity and movement, this was prescribed by a rehabilitation medicine physician. This doctor prescribed a bone scan that shows positive for RSD, did a nerve conduction test that indicates nerve damage from my ankle to my foot, and we're waiting for the results of a recent MRI. I've had 3 sympathetic nerve blocks with only short-term relief. Have tried the ketamine RX with no help. I too experience sensitivity to sheets/jeans/pajama bottoms touching my ankle. I build a 'tent' at the end of my bed with 2 pillows in order to keep the sheets from touching my anke. I'm still not able to put any weight on my foot without burning, flesh-ripping pain and can walk only with crutches or a knee scooter. I mention these tests in order to perhaps give you some place to start and hope that you are able to find a pain rehabilitation physician to help. Living with RSD is crippling; luckly we both have supportive spouses.

[rsdinfoot]

I'm taking Cymbalta for my RSD. It's very helpful in keeping my spirits up and probably helps with my pain although I still take over the counter pain meds when the burning gets really bad and I need to take them. The Cymbalta was prescribed by my pain specialist.

[cherribomb]

i'm not sure what state your from. i'm in oklahoma and i had the same problem your having but i finally went to a pain management clinic and went through a bunch of painful shots that were suppose to help but all i got was a sore back along with my ankle. I finally decided to go to another pain management doctor one who would perscribe meds because a lot of them wont. i would strait up ask them do they give out the meds. then make an appointment. it took me four years to find one. I'm now taking noroco for the short term pain and 2 opana's for the long term pain. it's helping a little. Just look in your phone book under pain management clinics and ask them if they will give you something for pain. I know i broke down in tears cus i was in school and having to walk plus all i was using was motrin. My doc felt bad and also he knew what rsd was. you should ask them at the clinic if they've heard of it. that will also help you find a doctor who know's what he's doing.