[newtome12]

I was diagnosed with rsd about january of this year. It has only been getting worse and despite the many medications they have tried we have not had any luck. I also had a nerve block done with no relief, I lost my job, home, and spouse all because of this. Feeling really depressed. Would like someone to talk to and give some advice on the next steps. There is so much more to this story, but I feel like it just goes on and on!

[reluctant@thetable]

Originally Posted by newtome12

I was diagnosed with rsd about january of this year. It has only been getting worse and despite the many medications they have tried we have not had any luck. I also had a nerve block done with no relief, I lost my job, home, and spouse all because of this. Feeling really depressed. Would like someone to talk to and give some advice on the next steps. There is so much more to this story, but I feel like it just goes on and on!

Welcome but sorry for the reason you find yourself here. Also sorry for your losses.

I was diagnosed in Nov. of the past year and also am on medications and had a failed nerve block- actually I had 2. The first was questionable, the second a failure. Those are all the early treatments- there is so much more available to help you.

You need a support system. You will find that here. We've all had some type of story unique to our group. Is your own family supportive? You mentioned you lost your home and job and that's a terrible thing. Do you have health insurance? Is your injury a result of a workplace injury? Where is the location of your injury? These are important questions that would help us direct you.

It's very important to keep mobile. I am in the YMCA pool 6 out of 7 days a week. It's really helpful.

Search this site. You'll find many helpful people with years of experience in this disease.

[newtome12]

Thanks for the guidance and the questions there is so much but I just can't remember it all. I was supposed to have R ankle surgery in december the doc sent me for physical therapy to reduce swelling prior to. The physical therapist electrically burned me 3rd degree burns to the bone. Which is what caused my rsd. Family is o.k. and right now i have insurance thru the ex until the divorce is final so it will end in about 9mths. This isn't a result of a workplace injury. I am on very limited income because of job loss and single mom after rent, electric, phone, and insurance theres not much left. I attend physical therapy once a week and thats in the pool. They have told me I can't have the ankle surgery for it will make the rsd worse and I could end up with a below the knee amputation. They made me a custom brace but I can't stand it on touching me. Physical therapist is trying to help with this, I wore it yesterday for 2 hrs. and was in udder tears and burning pain shooting electrical shocks. Not sure how im going to ever be able to wear this! I had established a team of docs and all in maryland, but since the seperation/divorce i moved back home to illinois and am establishing all over again.
Search this site. You'll find many helpful people with years of experience in this disease.[/QUOTE]

[alt1268]

Hi,
Welcome to the forum. I am sorry to hear about your lose's. I personally do not recommend a brace, this to can make your rsd worse. As far as meds. there is lots of them to try so don't give up just keep telling your dr. what is and isn't working. many of us are on a combination and see a combination of dr.'s.

I personally, had many lsb's (lumbar sympathitic blocks) in fact I had them periodically for 2 years. The last set was one week apart and they seem to really help. I got off my rollabout and everything. Although I didn't find a job and my rsd is starting to get worse again. i had a few months with minimal pain which was awesome and gave me renewed hope.
With this in mind, don't give up.

[newtome12]

Thanks, I also have a rollabout that i can use when i have to walk for long periods of time. I am very reluctant about this brace, but they say rolling my ankle makes the rsd worse to kinda caught in a rock and a hard place. I seen a neurologist here in il last week and he is referring me to the pain management doc here locally so maybe he will have some ideas that appt is this friday. I currently take nortriptaline? on spelling and lamictal xr it seemed to help at first but not really doing to much here the last week. I have vicoden that i can have every 6 hrs but i don't want to be addicted to them. So i try to only take when i really have to. The last 3 nights I have had a combined total of 6 hrs sleep. Don't really know how to function on that. And have been very dizzy.

[nalakity]

I understand most of what you're feeling. I'm sorry for your losses. And in such a short amount of time. I'm here...you can talk to me. Tell me the rest of your story, I'm listening.

[newtome12]

Just need to find the happy medium! And figure out how to get more sleep! Night sweats have been really bad at night to here lately, but I think some of that is attributed to frustration of the whole situation. The neurologist here said i have been on all of the medication he can prescribe as far as he goes. So he said he will maintain contact but I really want to see what the pain doc says on friday. Thanks for all the listening ears it really does mean alot!

[LIT LOVE]

Hope you've hired an attorney for the burn... Often you're required to file within 1 year. It would need to be done in the state where it happened.

[newtome12]

Already ontop of that! He is wonderful and so very helpful even in the venting process! And he has alot of advice as well and experience with rsd. Thanks for the advice.

[alt1268]

I am on neurontin, which is usually prescribed by a neurologist, abilify for depression which is great for sleep, butrans patch, clonidine patch, and estradiol for major hot flashes, and nexium for heartburn from the meds. HoPing to get zofran also for nausea.

As u see sometimes it takes a combination to vet relief of any sorts. As far as the rollabout it was a life savor in being able to participate in daily life with friends and family. If u can do without the brace and just Use the rollabout that's what I would do. There are many sites that say you shouldn't not brace an rsd limb.

I'm glad you are going to pain mgt. Make sure it is someone who specializes in Rsd. And can provide you with lots of options. Alot of people are vetting on board with tdsc.(? Spelling) I personally have not tried it yet but there is a whole thread on it.