Hello everyone. I found this site a couple of days ago thanks to the RSDSA. My husband was diagnosed with RSD officially 10/14/08. He is a firefighter and was injured on the job 7/07/08. On 9/03/08 he had arthroscopic surgery to repair both meniscus in the left knee. Four days later his leg turned purple, ice cold and he had excruciating pain to the left foot. The PA for the doctor told me it was a normal reaction from removing the TED hose. I am a paramedic and had never heard of such a thing but I believed him. On 9/10/08 he was admitted to the hospital to rule out DVT ( blood clot). He spent 4 days in the hospital and was discharged without a diagnosis. Work comp was obviously getting tired of him. Due to the persistance of his physical therapist he was evaluated by another comp doctor who said the problem was psych/neuro and in no way related to the injury or surgery. (In all my 20 years in emergency medicine I have never seen anyone who can make there limb turn purple and cold.) I found a neurologist at a university and a lawyer. While waiting for the Dr's appointment the lawyer told me that my husbands symptoms sounded like RSD. We were lucky that we got the diagnosis as soon as we did. My husband stared getting nerve blocks in November. He has had 3 so far and has good control as far as RSD is concerned. His pain averages between a 3 & 5 daily. His problem now is the pain in the knee never got better, still the same as before surgery. The work comp ortho surgeon has released him to return to work with an 80# lifting restriction, he can't work with that restriction. Told him he doesn't know what's wrong with the knee, for our pain management Dr to figure it out & if he get's better let him know and he will reevaluate him. I know we are lucky compared to what others have been through, I see it here and everyday at work in the ER. My husband has become so depressed. He has a psychiatrist and psychologist along with his pain management Dr and anesthesiologist, they are all great and he has made improvements. He doesn't want to give up being a firefighter and I understand that. Lately I have started to feel overwhelmed trying to keep up with work, going to school, and our 2 boys that are still at home. Most days my husband just lays on the couch and feels sorry for himself. He refuses to consider another career. I'm sorry for rambling. What an introduction. Does anyone have any suggestions for getting him motivated? The last couple of days have just been difficult. Thanks for listening and any suggestions.

Hello and Welcome to Neurotalk Medictlc!!! It is great to have you here and you will meet many great people who I am sure will be more than happy to help you if they possibly can!!!

I'm SO sorry to hear about everything that you and your husband have been through and are still going through!! I really hope that things start getting better for you both real soon and you're in my thoughts. Your husband is so lucky to have you to take care of him - many people aren't so lucky and you sound like such a great person!!

I also suffer from RSD. It currently affects my left leg and both arms. I developed it when I was 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of medications and procedures to try and put it into remission but none have really helped me so far. The only med that helps me is Ketamine but my doctor doesn't like me taking it as he feels it could affect my hormones because of my age etc. We are now seeking further options as a last resort to try and help.

Unfortunately, RSD and Depression often go hand-in-hand together! RSD ISN'T a result of Depression but CAN cause Depression because people are often inactive and mourn the loss of their old lives. I have been pretty depressed with RSD and it got so bad that at one point, I actually wished I wasn't alive. I see a Psychologist in London and she has really helped me - I still get depressed sometimes especially when the pain is bad but I can try and control it before it gets too bad. RSD affects the Limbic part of the brain which is why most sufferers suffer from depression, concentration problems, short term memory loss etc etc.

Here is the link to the RSD forum where you will find a lot of support - everyone there is really nice and friendly so im sure they will try and help if they can!! Please dont ever be afraid to ask any questions!!!

http://neurotalk.psychcentral.com/forumdisplay.php?f=21

Heres the link to the Caregivers section also that you might find useful as its important YOU get support also!!

http://neurotalk.psychcentral.com/forum56.html

Take care and I hope to see you around the forum more soon!!!

Alison

Hi Teresa, and welcome to NeuroTalk!

I can understand how overwhelmed you must be feeling right now. You and your husband have been through a lot.

NT is such a great place with lots of caring and friendly people, forums and groups. Be sure to take a look around.

I don't have RSD, but if you ever just need to talk, please feel free to PM me.

Teresa,
Hello, and welcome.
I was working in 83 when I first got RSD in a traffic accident that made the news.
I'm afraid that I'm not going to have a lot of good news for you.
I suggest that you have your husband join us here.

In all the time I've had rsd, It had spread, it took (back then) 7 LOOOONG years for a diagnoses, and my first wife left after that, leaving me with two young children. She "took the money and ran". She is a very ill/sad lonely person today.
I was in a second accident in 98. My second wife, who was accustomed to the rsd, turned on me. (I got a TBI, head injury). She took the money, threw me, and my children out of MY house, and is still trying to take ownership of the house. I am in doctors and lawyers up to my nose.
The only good things I've found from this disease is, I can tell when something is "wrong" with someone else. I have great empathy. I've learned a lot. I've suffered immeasurably, as have some around me, particularly my children. And, there is more.

But, this seems to be an affliction that gets worse, and spreads.
You've done the right thing. You're reaching out, because you are both going to need advocates.
Can you go to one or both of his counselors with him?

It seems but for the first, you have a good team of support doctors.
Now, do you have a good neuro? A Doctor who really specializes in RSD?

It's good that you realize that You're BOTH, getting affected by this huge change in life.

Oh, now to get him motivated.
I'm kind of new here myself, and I've been spouting an expression used by a doctor that I know(actually a few combined)..

There is a Triangle of Help/Hope.
First, you have your Meds, and that's your doctor.
Then, you have your Mood, that's your PManagement psych.
Then, your body. RSD, is a USE IT OR LOSE IT DISEASE!
For his own good, he should be as active as possible, and therein lies the hard part...

Best of wishes to you both.

Myself, and everyone else will be here for you both, and you may feel free to pm me.
I know that this is very challenging to the spouse, or caregiver. It's not a job that you asked for.
But, that you are here, to find out for him, shows what quality of person you are, and I congratulate you!

Pete
ASB

Ali,

You are so mature and knowledgable for your tender age. I'm sorry that you are going through this. We have 5 kids, the youngest is 13, and they are all having difficulty watching their father go through this. I think talking to all of you will be a great help to Jeff and I.


Pete,

I know we don't have it as bad as others, yet. I think the worst part sometimes is the unknown of when and what. I do go in to the psych appointments with Jeff occasionally and I can call them anytime for myself, they are great. This site is wonderful. Even though I'm in healthcare, as are most of my friends, no one has heard of this. The doctors I work with are only vaugely aware, they heard about it in school but never really saw it or was taught about it. This has been a learning experience for all of us. I guess if nothing else our future patients will benefit. I have to go for now, have an all nighter in the ER tonight. Thanks for everyones support.



Teresa

Thank you Teresa for your kind words, it means a lot to me!!

If I can help you or Jeff in anyway, please just let me know. I understand how scary it is to be diagnosed with such an awful condition and what the fear of the unknown is like so if I can help you, I am more than happy to!!

My mum also posts on the forum sometimes when I am unable to so if you would like to talk to her, please let me know and I will PM you my email address. She is my Caregiver so deals with a lot of the same problems that you do so might be able to help and offer you some advice etc.

Take care and please send Jeff my best wishes!!

Alison

Welcome to NeuroTalk

Ali always gives great advice and support. She is an excepitonal person. This forum is great. I'm very proud to be a member here.

Tell Jeff hello from (Broken Wings). I encourage him to read some posts on the RSD forum. You and Jeff are not alone here. We're here for you. We understand and want to ease your burden some. There's great resources here to help you and Jeff.

I look forward to reading your and Jeff's posts.

Motivated?

Give him to me.

My first thoughts were a big pat on the back for being a fireman and to you as well being an EMT. As far as all his other problems I can offer a quick prayer and hope his docs can find the answer. At the same time you can get a ton of info here as well as the rest of the web. *Try not to let it overwhelm you as it did me. I'm not familiar with RSD other than what I have learned here. (I have MS.)

Has your hubby tried sites like this one and reaching out? (NeuroTalk is tops in my book).

Also, any meds your husband is on? I had to swallow my pride and accept I needed anti-deppressants and a anti-anxiety. But I'm better for it in many ways.

Keep in mind;
You are not alone.
You are one of us.
And we are here to help.

I am the MonSter that MS fears.

Thank you. I am working on Jeff to get on here and chat. He looked around the other day and said it made him more depressed to think about what's to come. He knows it's going to get worse and is really having a hard time thinking about that. He is on Cymbalta and it has worked wonderfully for him. He also takes Seroquel to help him sleep. I think we will have to talk to his psychiatrist about something to take as needed for anxiety.

Hopefully in time he'll come around and join. I know this site would be good for him. I joined a similar site 3 yrs ago for a medical condition I have and it was a lot of help to me.

Teresa

I don't want to even type what I'm about to...
Has his Neuro started him on Seroquel?
It's NOT a sleep medication. It's an "Atypical" for BiPolar disorder.
Very Dangerous.
There are loads of lawsuits against the makers of these "Atypicals".
Do a google search.
Zyprexa is another one.

The drug companies have spent Billions on swaying doctors into ordering these meds for "off label use".
Please, be VERY CAREFUL with Seroquel!
It's NOT indicated for sleep!
Weight gain can be unbelievable!

Pete
ASB

Just a warning... PM me if you'd like.