many questions
 

I have many questions. First I would like to say I am new to this forum and Rsd happened12/12/08 and12/25/08 diagnosed in may 09.. due to work comp injury.. of course they are not paying.surprise, surprise.. first does everyone have color changes? or does it happen later? I really dont have pain meds. the strongest thing i have is 500 mg of naprosyn.. which is really bad..how long did it take everyone to actually get some help? Every doc has either refuse to treat me or given up. Im so tired of hurting and not sleeping and being depressed all the time.. I was some semblence of a normal life to start soon..Did anyone else have trouble going through the stages of grief? I seem to be stuck on the why me part and cant seem to get angry.. I am more than willing to give anyone my cell number so we can talk or text so we can help each other..everyone needs someone to help.. right now i have noone..

So sorry for your RSD pain and sadness BAbs..You have us here... We know exactly what you are feeling and can relate to all of oyur emotiions and stages..If you look at the RSD hope website it will explain in detail the stages and what to expect..color changes as well as grieving... This is a big loss in our lives and it is a 5 step porcess of grieving..We all feel the anger, sadness and loss..hopelessness..Just know you are not alone..Do you have a goo Dr. who understands RSD???? Also have you htought to talk with anyone?? A councelsor??? I fought that at first but now I look forward to speaking with mine.. As far as meds...I don't take anything as I have a sensitive belly but many here take many things and i know they will help you on that... I have been dianosised with a very aggressve form of RSD... it is plain aweful and scarey..I have done many things including a SCS and now looking into Ketamine treatment....I now this is so hard on you..try to pull yourself into our family here *** I couldn't make t without them... I know I have read your threads/posts before..Share with us and know that we care a bunch about you...

Let me know if there is anything else you need....

KS:hug::hug::hug:...

Oh Babs...I am so very sorry that you are going through this. It is bad enough to have this awful thing, but then to have no support from either doctors or anyone else...that's terrible.

I too am a work comp case with RSD. It is really just awful working with them. I wish all the time that this had happened outside of work because if it had I would have been getting much better care from the start. It took 6 months to get a diagnosis and since getting it work comp has been butting in, putting pressure on the doc, refusing to pay me for time off when the doc wrote a script for me to be off, delaying PT, delaying procedures that may have helped relieve the pain...the list goes on.

And what I have come to realize is that I can't count on them, the doctors, or the lawyers to make me better. I have read tons of information on this awful thing. I am by no means an expert, but I have read enough to know that I need to be the one that is proactive. I have to push through the pain, even though it tries to bring me to my knees, and keep going. I am very lucky to have a boyfriend who understands what it is like to go through a long rehab. That's how I have come to think of this...as a sort of rehab because I am not giving up until I can walk normally again and get back to a more or less "normal" life. I am 26 years old and I will not be crippled for the rest of my life if there is anything I can do about it.

You are not alone Babs. And it is totally normal to feel the way that you do. Talk to everyone here...let it out...we all understand. So now to your questions...

First, not everyone has color changes. I myself do not have color changes. I have serious temperature changes. My leg goes unbelievably cold from the knee down...I'm talking ice almost feels warm sometimes. I use a heating pad constantly to help with that. But everyone is different. You do not need to have all the symptoms of RSD to have it.

As far as meds...there are lots of different ones. I personally am taking 300MG of Lyrica a day, 100MG of Ultram a day, 15MG of Mobic (anti-inflammatory) a day, and 10MG of Doxepin at night before bed. I also have Lidoderm patches that I wear 12 hours a day (these have lidocain in them and while it doesn't make a HUGE difference for me...they provide a little bit of relief). I am also going to be getting a TENS unit which I have found very helpful at physical therapy. I think for you, if you can't find doctors who are really knowledgeable about RSD (have you tried a pain specialist?) then maybe you can see your regular doctor and be armed with questions and suggestions about what different meds you can try. I am sure people on this forum will be more than happy to give you other suggestions or links to information that will be helpful. The RSD Puzzles link that I found on this site was very good and informative, but only one of the sources I looked at for info.

It took 5 months to get a diagnosis and about 5 different doctors before I found one that gave me a diagnosis. I don't know if I will stick with the doc I have now or not. He diagnosed me but has been easily influenced by work comp and is not giving me proper care as I see it because of the influence by work comp.

Feel free to PM me and we can talk some more if you want to. But just getting it all out on here can be very therapudic too because here you have a large number of people who get what you are going through and who will help keep you strong and give you the support you need.

:hug:

ok well my hubby is trying so hard to help and be supportive,, but he just dont understand how much pain i am in.. both physically and emotionally.. He is not willing to let me just stay in bed and give up.. He makes me move and do things really.. Its just that im alone in my feeling that they dont understand how much it hurts.. I keep saying its worse than child birth and they say thats impossible.. and to me it really is the best way to describe it.. I feel like i am losing my mind. I forget every thing these days.. my vision keeps going fuzzy and they think they are migranes and im not so sure.. and i feel like its spreading down my right elbow now.. and my doc says he can no longer help me cuz the blocks didnt work longer that 2 days for me.. its pitiful.. He canceled therapy at my request cuz it was so hard for me to do.. I have just about totally lost my left arm.. I try to use it as much as possible.. but i cant lift with it or make a fist with it.. have less than 1lb weight limit. its horrible.. I really need a life...lol

Hi Babs, I am so very sorry you are going thru this dreadful disorder, and have the added burden of dealing with WC and no support.
WC has a legal duty to care for your medical expenses, loss of work, counseling, retraining, and your legal expenses if they don't follow thru. They are legally responsible for your increased spread and your worse outcome due to neglect of their duties in a timely manner. I'm not an attorney, nor is my case a WC. My daughter is a court reporter. I don't know what state you are in, but generally a person has 2 years from the diagnosis to file a legal complaint. There are WC Specialty Attorneys that accept their fee, which is usually a percentage at the end of the legal mess. States are different so if you go the legal route to get the wc and doctors moving , you would need to check with them.
You are so right-this is a life altering disaster in our lives. And we do need to go thru the grieving process. I lost my parents early and went thru 2 plus years of weekly counseling.
As for myself, it's been 15 years. Immediately following surgery, I got swollen arm and frozen shoulder. But I didn't get a diagnosis for 4 years. I had private insurance and went thru 100 physical therapy treatments to get my range of motion back and did 100 massage treatments prior to pt out of pocket. I went into remission for over a year. They therapist told me it might,likely, would go to the opposite shoulder. I thought that sounded strange, but we were moving from Oregon to Arizona. Sure enough, I got frozen shoulder in the right side. more pt and massage therapy. Then another remission.
Then while water skiing, I felt a nerve pull in my left hand. The Dr. said rheumatoid arthritis, because my fingers were swollen and frozen straight. The tests said NO RA. He said tests aren't always correct. I decided to go back to Oregon and see a Ortho Sports Injury Group -Hand Specialist.
The Tract & Field Olympic Trials were held there. It's a Sports Capital with lots of good Drs. In one minute the Doc said RSD. Send me to hospital nuclear med dept. and confirmed. He ordered a Tens Unit, which helped me. and started me in physical therapy next day. When I came back to Arizona, I found a neuro-more tests confirmed-and hand ortho who confirmed and had his own physical therapy group who were experienced in RSD. Besides pt on my hand, they did desentization. I also did it at home every day. I took about 5-6 plastic bowls and put cotton balls in one, rice in another, pieces of fabric in another, sand or coffee grounds in another, beans, and run my hands or feet in them. We are so sensitive to touch, doing this every day helps overcome the sensitivity. Because I had misdiagnosis and delay of treatment, I only got 50% of range of motion on my left hand, but I'm thankful I can cut my own food again, button buttons, and zip my clothes etc. I know have full body, generalized, but mobile in all limbs except the left hand. A couple years ago my toes started curling off the floor. My RSD Dr. had me in the pool every day doing counter exercises. 4 months later my toes were flat , touching the floor again.
We don't know where you have RSD.
One website with lots of good information is rsd.rx Dr. hooshmand from Florida is retired, but kept his website up. Go to Puzzles and there are 146 puzzles or really questions with his answers regarding RSD. Good information. I'm not sure where the other site our friend was talking about, but RSDSA is the national organization and has excellent information. I attended their annual convention last year in my home town. If you go to RSDSA and put in your zip code, you will get a phone number and contact name for the nearest support group. Ours is held once a month. Jim Broatch can also give you a list of Drs. closest to you. The Cleveland Clinic has an excellent RSD center.
When I was diagnosed full body (and internally) my neuro recommended counseling. I didn't like the two psychiatrist he referred me to and I really did like him, so I looked in yellow pages and found a gem of a Dr. He had moved here from New York Cornell Hospital. He is a neurologist, psychiatrist, and pharmacologist. He also teaches and does trial studies. He just built two clinics with HBOT in both of them. HBOT stimulates circulation. I'm saving to have the treatments this summer.
A woman was driving on the freeway in Phoenix and two other cars collided. They ran into a metal fence and one of the metal poles became a missle and went thru her windshield and took off part of her finger and arm and pinned her shoulder to the back of the seat. They saved her arm and most of hand with 18 operations, but she got frozen shoulder. Her neurologist called my neurologist and asked if he would take her as his patient and do the HBOT treatments on her. My Dr. did 9 treatments and she was waiving at the TV Crew that came to the clinic to report on her amazing progress. Remember it took me 100 pt treatments for frozen shoulder.
I'm going Private Message you with my phone number, should you like to call. My time zone is 1 hour ahead of west coast and 2 hours behind the east coast. I'm not mechanical, my phone has unlimited texting, but I haven't learned to do it yet. My daughter is going to show me. I have Verizon.
You definetly need meds. Just sleeping a restful sleep, lowers your pain level and anxiety level. There are meds that work well on nerve pain. My Dr. is conservative, but I like that. I have a window of time I can drive and do errands.Driving with opiates can put you in jail and injure yourself or others.
Water therapy needs to be 86 degrees and you don't want to get in a hot tub that is 104 degrees. Ice is a no no and so is cold water. I got the 86 degree off the RSDSA web site. RSD on the McGill Pain scale of 1-50 is rated 46--- higher than amputation and child birth. That is on the RSDSA
Repressed anger is anger turned inward and deepens depression. I was told that by a counselor. Depression is part of RSD, because RSD affects the Limbic part of the brain that controls those emotions, short term memory, why we are talking to someone, then forget a work, or can't finish what we were ging to say. RSD is an autonomic disorder, which means the involuntary organis are involved, like the heart , lungs, kidneys. The sympathetic Nervous System controls our blood pressure, circulation, immune system. the para sympathetic nervous system causes low blood pressure which can cause us to pass out, that has happened to me once. I was out a long time and in the hospital 4 days. Do you have involuntary spasms, jerks electric jolts?
If you aren't getting the kind of medical care you need and deserve , you could call the local support group and see what is available near you. or call a larger city support group where they have a teaching hospital or mayo clinic. Like we have two mayo clinics here. This is where 5-6 Drs. did the ketamine studies a few years ago, at one of the mayos. Two of the Drs. are practicing in Philly.
Again, welcome, you find so many wonderful friends here, with kindness and comfort, very supportive. Take care, one of your new friends, loretta with soft hugs:grouphug:

Dear Babs,

PLEASE get a lawyer to help you -one that specializes in WC issues for IL and that will help you get the care you need. In the meantime, do you have a personal care physician that you see? perhaps he/she can help you with referrals to a good PM group. Try to find the very best docs that you can - at a large city hospital, a teaching hospital affiliated with a good university, etc. Make sure that you docs are board certified Anesthes/Pain Management. Loretta is awesome, her advice is the best, she supported me when I was new here and I will always be grateful to her....

Good luck and take care of yourself, we care XOXOX Sandy

Ok so i do have a lawyer.. But I have no doctor which made me even more depressed. I have looked at the websites for rsd that i have found and none in my area.. I live in Iowa. Closest i found was in Kansas city Kansas. Which we are going to check into.. for docs i mean that specialize in rsd..
I have the Rsd in the left hand and arm and both shoulders,, feels like its bout to hit right elbow.. Elbow is starting to have some burning to it as well..I will say that you guys have inspired me to keep moving forward to have a better life.. I see all the pain you are writing about and you are trying so hard to survive and its so much worse than mine.. you guys are wonderful.. I am so glad that i have found this forum, its made me see that i can do this and keep going and not give up and just let it consume me.. so thank you all....:hug::hug::grouphug:

Check out the RSDSA.org website
 

The best of the best for current info on RSD is the RSDSA. Membership is $20(it's free if you can't afford it). The website can help you locate doctors that specialize in RSD in your area. It also has a terrific, up to date, database of articles of current interest in the medical field.

It is hard sometimes to find a local doctor - my husband drives me to Boston from RI for all my treatments. There is no one that I know that is treated locally here in RI for RSD that considers their doctor highly competent. And you can't get the most advanced treatments here, anyway. So I need to travel. And you may have to also.

Keep your chin up, XOXOX Sandy

Babs, Good for you!!!!!! That's a great attitude. Knowledge is Power! Getting a good Dr. is so important. I got mine out of yellow pages 6 years ago. He has been great-so knowledgable, kind, and supportive. He is a Psychiatrist, neurologist and Pharmacologist, so the combitnation is a perfect fit for our disorder. He understand grief ,loss as he lost his wife to cancer. Then one of his daughters went to Florida with her boyfriend to visit an aunt who had just moved into a new home. It was a chilly night and the aunt turned the heat on. No one woke up. All died from carbon monoxide. The heating and cooling person mixed up the line for putting the carbon monoxide outside the house, instead he put it inside. So sad. I lost a friend like a son to me and my Dr. was very supportive.
Please keep in touch and let us know how you are doing. Your friend, loretta with soft hugs :grouphug::grouphug:

how awful
 

Thats awful...... atleast they didnt suffer any.. I am going to be looking for a mayo clinic bout 2 hours away from where i live.. I just heard there is one in the area.. Hoping there is one and they are specialists on our condition like i have read..I hate to keep asking hubby to drive me to out of town appointments all the time.. He never complains but its has to be annoying him some. i dont think i would have come this far if it wasnt for him, hes just wonderful... i didnt know that crps and rsd were different? my records say both i believe.. not sure. mostly crps though. is there a difference?

:grouphug:barbara

Good morning Barbara...

RSD and CRPS are one in the same..Just CRPS is a more current name for RSD.. Now RSD/CRPS is divided into two groups as CRPS I and CRPS II.. due to the injury and nerve impairment...their are many stages of CRPS which we all fall into a catagory...3 stages.. and to drive you a little more crazy..their are 5 stages of grieving thru this whole process..just as when you lose a loved one....so be patient with yourslef and everyone around you as we all have to ride the bumps and sadness of our illness...and it affects us differently than our loved ones...

I hope this helps you and talk to us..ask away anything elase you would like..we are here for eachother..and we are a great family!!!

Have a sweet day!!! Kathy:grouphug:

i do try to be patient with them..They are more patient with me though than i am.. I never had patience to begin with..lol.. i sometime think its harder on my kids than it is me.. They are more frustrated, or atleast they havent figured out how to hide it yet as they are only 12 and 15 and changing themselves..Everyone says once the settlement is finished and i get the money i will feel better but i really doubt that.. It is just one problem out of the way.. The pain and the grief is still going to be there. the hardest part is we are living with my parents, and im working part time and they are messin with me trying to fire me.. which im sure will happen soon..I asked my hubby to stay off work til this is resolved with the suit, so he can be there for all my appts, since i forget everything anyway. the worst part for me is I feel like i am losing my mind..I was going to go back to school, but now not sure if i can remember what i learn.. Or if the stress of school is going to push me over the edge right now..Im really unsure of my self lately.. Its horrible..But I like to think with the help of all you wonderful survivors i can do anything.

Babs, I just wrote a long letter-and it disappeared Did you get it.?
I'll just mention a couple things I wanted to say. Make notes of everyday of work. Try to get lifetime medical coverage in your settlement. Others have.
Stress does cause flares and spread. They should be paying for counseling for you. Psychologist or psychiatrist. The second one can prescribe meds. I had the first one when my parents died,which was perfect and I have the 2nd one for the RSD, which is perfect. Many good Drs. don't take insurance any longer. I've been paying $250 an hour for my psychiatrist.
This is out of pocket. I go once a month for 5 years and now in 6th year going once every 2 months. When I passed out for 1-1 1/2 hrs I was in hospital in semi icu-cost $35,000 An example of why WC should pick up your tab. I've had this 15 years. I wasn't a WC case. I didn't sue my Dr.
Take care, I need to figure out how I'm erasing my letters-frustrating.
Your friend, loretta with very soft hugs:grouphug:

my insurance allowed me to go to a specialist without a referral so i was able to just go to a neurologist. they immediately gave me meds, steroids and scheduled my nerve test. I suggest bringing pictures that show your crps at its worst (color/swelling) and tracking your pain in a journal or planner, so you can show exactly what's going on. You may need to see more than one neuro to get a good one. Good luck!

neuro`
 

I see a neuro for migranes right now.. and she has touched base with my crps.. she has answered some questions for me about it..Hubby wants me to see if she will be a treating dr for the time being..I really want someone who specializes in our disease to be honest so i get the right treatment... But i am scare to have the nerve test.. I hear its extremely painful..
but I will keep a journal.. thanks for the advice,,


good luck

:grouphug:

I understand..
 

your hesitation Babs..but do everything you can to get your questions answered and a Dr. who specializes in RSD? CRPS..Neuro..PM or other..as it can be hard to find one but it is essential..then you should read and do your homework on our condition..ask away here plus Dr. and websites...we are all the same in that we have this ugle monster but we all different in that it affects us all kinda, differently..Early stages you may respond to treatment better..I am not minimizing treatments and tests but you should have the diagnosistic tests and treatments as offered... possibly you'll have gotten some relief...

I hope I helped you...KS:grouphug:

Well i agree with ya.. my doctor just kind of gave up on me all of a sudden.. Kind of freaked me out.. Made me feel like i had the plague or something.. But I know together we can help each other, and the questions i have had for over a year have finally been answered and i feel a huge weight has been lifted off my shoulders. So eventually I would like to meet all of you wonderful people who have helped me through this..

Thanks..
Always your friend

Barbara

Barbara...
 

I am sorry your Dr. ran on you..I think he ran cuz he was out of his area of expertise..RSD is not common for many Dr. Seems they either know about it, a bunch or they don't anything! That does not make it any easier for us tho.. I am so tickled we can help you... Were family..family don't turn their backs on eachother...ya..one day we'll throw a huge RSD party... and get to meet eachother...I'll be the one who keep(s) smilin!!!

Hugz, k

Dear Barbara,

I requested an updated ketamine doctor list from the RSDSA today. In DesMoines, Iowa they have Dr. Steven Quam 515-221-9222 on the list.

Docs that offer ketamine for RSD will be pretty experienced in the field and should be able to help you better than most other docs. How far are you from Des Moines?

If you want me to e-mail you the entire list that I got today just let me know.


Good luck. XOXO Sandy

yes!!!
 

My drs appts now are in Des Moines and so are my lawyer.. And i would love that list if you wouldnt mind..

my email is mickeymouse52501@yahoo.com
I live about 90 miles away.. Thats pretty awesome that you found that.. I will call and talk to someone soon about that..My lawyer likes to make my appointments, cuz my last one the resident i saw was opposed to my case and stressed that. and hes worried that it might hurt my case and were almost done with it.. So i will talk to him about this doc asap.. He might know of him.. thanks so much..the last resident tried to get me to fire my attorney.. it was quite funny now. but at the time i was quite upset about it.. my attorney has become my best friend in helping me to be honest.. hes helped me with bills and everything..hes been a great help..

Hi Babs,

Welcome to our club, but sorry that you had to join !

Not a great pain day for me (hence why I am still up at 3:30 :wink:), but I wanted to say......Hang in there !

When you do find a doc who 'gets it' and gives you some meds to lessen the pain, you will be able to feel like there will be some decent days ahead for you.