Might have RSD
 

Hi, my name is Ruby. This is my first time posting and on this site. My doctor thinks that I might be in the beginning stage of RSD. But the nerve doctor says that I don't have all of the signs of RSD. I fell and brused my knee about 5 months ago and the pain is not getting any better. It hurts to set in a chair, to have anything touch my knee above and below my knee, from my knee down to my toes swell up, and my foot is cold about 95% of the time, and it hurts to walk. But I don't have any discolor in my leg, and my leg muscle is a little smaller, but my doctor says that I'm not doing my leg exercises. I don't do them much because it hurts too much. If anyone can help me figure this out i would really be thankful.:confused:

I feel badly for you. I've had rsd since '83. long time.

I still cannot believe these (doctors) who feel that you must have ALL the symptoms that CAN come along with RSD, to make a dx!
BLAST THEM!

It sounds like RSD, so Treat it like RSD so that you have a chance of putting it in remission!!
Don't wait for a stupid arsd doctor to make up his mind!

You've got to get to work on the cure, swim in warm pools, PT, etc.
Meds, so you can tolerate that!

Please, tell us how this injury happened? Were you at work?

You're seeing the wrong doctor. (nerve doctor), I'm not sure what that is, but find a Neurologist, who's treated and dx'd RSD before!

The ONLY chance of not living with this monster forever, is an early diagnoses (dx).
Get one!

And, in the mean time, Keep moving!
Don't let the pain win!

Keep us posted please?
We've got so many good folks here, who will help!

Welcome, rubyvk2


Pete


asb

I Agree !!
 

DON'T put it off ! Get the diagnosis on record ASAP, so you can get this treated ! Don't let the doctors give you the runaround.
Have you had any testing (MRI, Cat Scan) to rule out blood clot or something like that?
My issue is with both legs 5 years now. I was in 'denial' the first 2 years. I regret the fact that I let Dr's give me the runaround and spent thousands of $ on needless testing.
5 months is a long time. You need to get someone to take this seriously. You don't have to have 'all' of the symptoms of RSD.
Please find someone who will get on this NOW.

What is going on with my knee.
 

Hi, this is Ruby again. The doctor that said that I don't have RSD was a neurologist. My knee specialist thinks that I do have RSD. She is going to give me some shots in my knee to see if that will help, but if it does not help then she does not know what to do. She say I can have shots in my back, but I have back problem too so I don't want the shots in my back. I have had a bad knee since I was 9 years old. I have had about 6 knee surgeries on the knee. 5 months ago I was taking my dogs outside in the morning and I tripped over my garden hose that someone left laying around. And I bent my knee to far, it felt like everything in my knee tore. I went to the knee specialist a week later and had an MRI. the MRI showed up that I only bruised my knee. And the pain has not went away. And new things keep coming up with my knee and foot now. I have been taking pain meds. and muscle relaxer to help with the pain. I still walk on my leg. if it was not for the meds. I would not be able to walk at all. My foot is starting to get hot now and my foot and up my leg will swell up so my boot is to tight. Is that normal? Thanks for your reply.

Ruby

Hi Ruby,
 

My thought would be to find an Anesteologist/PM Dr. They do pretty good at diagnosing RSD and treating it.

I think many of us have went through what you are going through. Drs. donot want to acknowledge RSD due to the long term treatment of it and no cure.

I never had any luck with Neurologist. I saw 4 of them they were jokes. If it doesn't show on their test then most of the time they donot acknowledge it.
I went through that with my TOS and RSD both.

I would try and get some blocks to see if that might put it into remission.

You will get a lot of good help here. Also read up on RSD sites and learn as much as you can about it. Dr. Hooshmand has a good puzzle on a website. Just type in his name.

With RSD the more you learn, the better you can find that right Dr. to help you.

Stick around.

Ada

Hi Ruby,

I have brachial plexus RSD from stretch injury(s) to my right shoulder, was diagnosed in June 2008 but probably had it longer than that.

I would be real careful of injections into areas that are not already impacted by your condition - I am fairly certain that a series of trigger point injections into my cervical spine and the occipital area of my head caused my RSD to spread to those sites within months from diagnosis from the original site - the right shoulder. I have suffered more from agonizing head pain than any other pain since all this started. My RSD has also spread to both my legs.

I second Ada's opinion on Neurologists - the one I saw in RI attributed my pain to "depression." He just had no clue, and likely didn't have any other RSD patients. I would encourage you to research all you can - see RSDSA.org - it is another great website with a terrific database of medical research articles and can also provide you with information on RSD docs in your area. I have used pain management and/or anesthesiologists almost exclusively since getting sick. Try to stick to the larger university teaching hospitals or city medical centers where the better doctors are located - you will be better off in the long run.

Physical therapy is also very helpful, but only if you find a therapist who knows what's going on. I've have therapists who have probably contributed greatly to the onset of my RSD (at the orthopedist's office, subsequent to rotator cuff repair surgery), to a guy who was awesome and tried very hard to support me and get me better that was elsewhere. It's preally just a matter of making sure they have EXPERIENCE with RSD. Also - make sure that they don't use any ice.

This is a great site with lots of great people. Welcome and the best of luck to you.

XOXOX Sandy

Hi Ruby,

I have been in your same boat. Actually, still there. I am now looking for a new pain doctor and have found one through recommendation of a friend and another doctor. Hopefully, he will help me.

I had surgery on my left foot for removal of a neuroma in June of 2008 and it has been a downhill ride since then. I have had injections, nerve blocks in the local area (no spinal one, yet), pills, .....you name it. The RSD set in after the surgery.

I would go to a pain doctor that comes recommended. Pain clinics seem to be the new, hot area and some of them aren't great. Maybe you could ask around for someone who knows of a good one. Or, as someone else said , a neurologist. Sometimes, a pain doctor will be a neurologist, too....or an anesthesiologist.

I wish you the best of luck and the best of care. Take good care .

Thanks
 

Thanks everyone for your help and kindness. I'm going to go see my family doctor tomorrow and see what he says. And I'm seeing my knee specialist on Feb. 11 to see what she says. I will not get the injections in my back, because I will not be able to get out of bed for a week or more after I get the injections. I have had the injections in my back, but they were for my back pain. I have been reading about RSD and I'm starting to get scared about it. Is there other treatments out there besides the injections? I just wish this would go away.

Thanks,
Ruby

hi ruby,,,,,,,I hope and pray that you dont have RSD,,listen to the advice to the upper posts and you might want to see a pain management Dr to get an RSD dx.....dont put it off,,if your in the early stages ,its inperaative that you get all the vastly need care that you can,,,,Im hopeing you can get blocks injections to slow it down,,,as Ada noted ,a good anesthologist and pain managementdr;s are a very good way to start to get the Dx that you need,and the proper care,,,,Time is an issue and is a valuable thing not to waste when dealing with RSD,best wishes,,,,I do hope that its anything else but rsd,,,,

Good morning all...

Hello Ruby.. Time is of the esence.. And I third Ada, in that neuologists altho one would think they would be the Dr. of choice for this condition..i saw many and would not give you two red pennies for them.. i treat with a PM Dr. he has the most vast knowledge.. At this time 3 yrs. into my RSD..it has spread and makes each day a challenge but it is my life now.. plz. move quickly and find a good RSD Dr. as to take steps early for intervention.... The very first question to the Dr. is..do you know about RSD??? If they look at all puzzled and don't take you seriously.... move on to another Dr. .. immediately...

Lean on us here..we are a family worth hanging with...

KS:)

Hey. I am sorry you are facing this. When I first developed this pain condition I had no injury and did not have all the signs of RSD. I do have RSD with another condition PN. It is very key to see some one who works with RSD a lot. I agree about the pain doc. My neuro after I was dx with PN stated he felt I also had RSD but did not know that much about it other then the meds which are used for both. I se you are from MI where I am from. I traveled to Ohio but also saw some docs in MI. I am from Oakland County but if you want I am here and can try to help you. I have seen basically every specialty from reumos,endos,neuro,multiple pain doc. Its been a long road with a lot of opinions. Hang in there

seen my family doctor
 

Hi everyone, I just got back from my family doctor and he said that it looks like RSD. He is getting my medical records from my knee specialist and then sending me to a pain management doctor. So I can find out for sure that I have RSD and be able to manage it. I can't get the injections in my back because of my back problems, so I have to find a different way to manage the RSD. I hope that there is a different way to manage it. I'm starting to get scared about this RSD, I hope that I can manage it so it does not get bad. I think I'm getting closer to finding out what is wrong with my leg, if I have RSD or not.

Thanks,
Ruby

Ruby,

I have just started going through this as well and reading up on everything I can find. It IS scary, but everything that I have been able to find about people having success overcoming the condition (not meaning they are pain free but meaning that they regain function and the ability to do a lot of things) is keeping a positive attitude. Don't let your fear get in the way of recovery, but I am scared to death of all the what-ifs. But I try to be rational (most of the time) and talk myself down when I find myself focusing on my fears instead of taking it one step at a time and working towards the best result possible...whatever that might be. Sorry that you are going through this and I will be sending my wishes your way that you do not have RSD.

Ruby,just a thought for you. When I first found out that I had RSD. I had a Dr. do an EMG. This way you can see how far your's has progressed. Or maybe you already know where you are with this? I also wanted to welcome you to this wonderfull and caring group here! :hug: Breezy55

seeing a new knee specialist
 

I go see a new knee specialist on Feb.3. I will find out what that doctor has to say. I hope that it is good news. I don't know were I am with this RSD or if I even have it. That is what I'm trying to find out. I'm almost thinking of saying forget about finding out, because it costs to much money. Sorry I'm not in a good mood tonight. My leg is just killing tonight. It has been hurting all day today. I don't think the doctors are going to do any test on my leg. The doctors have not even talked about any tests. My family doctor thinks that I have RSD too. I will talk to you guy tomorrow. that is if I can get on the net tomorrow. I have to work all day tomorrow.

Bye
Ruby

Hi Ruby, I'm so sorry you are here under these circumstances, but it will be a blessing to you. There is a wealth of accumulated knowledge and compassion, and kindness here. It does sound like RSD-you don't have to have all the symptoms. I had a nuclear med test to confirm RSD in hand. That was 4 years after getting RSD following surgery. After 9 years, I have had a wonderful neuro, psych. & pharmacologist the past 6 years. The combination of meds have helped tremendously.
There is a website rsdrx.com that is so good. Under puzzles-there are 146 puzzles or questions with his answers. Very good.
My Dr. built 2 clinics and put HBOT in both of them. I'm going to have Hyperbar Oxygen Chamber Treatment. It increase oxygen. RSD does several things. Raises Blood Pressure, Lowers Blood Pressure. Alternates the Immune System, Effects circulation ,body temperture, inflammation is increased. RSD can go into mouth, ears, eyes, Besure and check out these areas and take precautions before going for treatment. Physical Therapy can be a lifesaver. I have had this 15 years and am fully mobile except for 1 hand-delayed treatment.
When I was diagnosed my sports injury orthopedic Dr. ordered a Tens Unit for me. I did therapy at home everyday to keep mobile and desensitize.
Take several bowls with cotton balls, coffee grounds, sugar, rice, beans, popcorn kernals, etc to desensitize hands. Physical Therapy saved me from being crippled. Massage Therapy was not fun, but also saved my mobility.
Water Therapy 86 degree water is very helpful- No Ice
Staying Calm is so important, nice music,Visualization, Prayer, Meditation,
Reading, candles, Listening to ocean music, the rain, water falls, can put a person in a peaceful state of mind.
Counseling helped me a lot-I'm in my 6th year. I'm so grateful for this avenue of help. I had 2 plus years of psychologist after my parents died. In this matter, a psychiatrist that also is a neurologist, and pharmacologist has been a great combination. I had difficulty sleeping, and he included me in a 200 person trial study. I sleep 10 hrs now and it has helped so much. I was able to lower my pain meds.
Please feel free to rant, cry, share your pain, both psysical and emotional wenever you feel like it.
You can go to RSDSA and put in your zip code and get the closest support group meeting. I have found them very helpful and informative. You can get connections thru the friends there. They have an annual meeting in Feb-Mar and very informative. It was here in Arizona last year and I attended.
Biofeedback is another form of help some people use. Surgery is something that most people run from. That's how I got RSD.
There are prominent RSD Drs. in the country and some people fly to see a good Dr. I knew I was misdiagnosed, but had no idea what I had, so I flew 3 states away to a sports injury group I knew famous athletes went to. Took 1 minute for him to look at my hand and tell me what was wrong. Followed up by tests at hospital. It's worth the $ to get on the right road and receive the proper help.
Take care, and welcome again-you are with wonderful caring people. Your friend, loretta with soft hugs:grouphug:

getting depressed
 

I'm just getting depressed about my leg. It hurts to sit in a chair or lay my knee on the bed to sleep. I do taxes for my job and it is hard to think about what I am doing when my leg hurts so bad from sitting in the chair and getting up and down to get the paper work. Then I have to stand on my leg when I go outside to smoke. About half way through a 6 hour work day, I just want to use my crutches because of the pain in my leg. And the pain pills does not help for very long. What type of job can you do with RSD. I'm starting to think I need a job that I can just sit all day long and not have to get up very much. Do any of you work? And what type of job do you work at? How long does it take before you can't work anymore? I will talk to you later.

Thanks,
Ruby:confused:

Everyone is different with work. I know some people who had to take years off at the start then found the right treatment and went back and others who worked at the start to not in the future. I still think you need to get in to a pain doc/anestesolgist asap. The proper treatment as soon as possible is important. Also you stated smoking and that is horrible for rsd. Though I know it is hard to stop I encourage you to try. Hang in there and try to take 1 day at a time

seeing a new knee specialist
 

I go in to see a new knee specialist on Feb. 3 at 9:30 in the morning. I hope that this doctor can tell me if I have RSD. I'm going to try and get a job that I can sit down for most of the time. I'm thinking about becoming an accountant. And I'm going to go through Michigan Works Rehabation to have them help me get a job. Wish me luck on this new doctor. I will talk to you later.

Ruby

Please be open minded about "shots in the back".... when you go to see a pain management doctor, they will probably want to do a lumbar sympthetic block. It is often used as a diagnostic tool for RSD.

When my RSD traveled to my shoulder, I had a couple of these blocks, done in the neck. They were really no problem.

Hi! I was diagnosed with RSD in March of 2009. I see an ortho doc and a pain managment/anastheoligist. They used a triphase bone scan and did some temperature test to confirm the diagnosis. These two doctors work hand in hand with my case and are so great. I could not ask for better docs. I hope all goes well and you can find you a great doctor like I have.

shots in the back
 

I have had steroid injections in my back for my back pain and I can not move for weeks after I have had them. It might help my knee but it will not help with my back pain and that is why I will not get the shots. While I was getting those shots I did not have any knee pain. So I will have to find something else that will help with the RSD. I go tomorrow to see this new knee specialist and see what he says. I hope that he can tell me something. Wish me luck for tomorrow. Thanks for everything.

Ruby

I'm glad that you were able to find some great doctors. None of the doctors that I have seen has not said anything about tests. They are just looking at my knee and leg and says that it looks like RSD. I hope that I can find out soon if I have RSD or not. I have tingling in my leg now. My knee is starting to go cold too. But my pain is just a constant pain, the pain does not burn. Good luck with your RSD. Ruby

Ruby ofte times pre dx and after the treatment is the same. Before I was dx I was doing the same treatments as after. I still am glad I got such extensive testing like really beyond because it was to rule out other conditions then rsd. You need to get diagnosticly tested. I know that my pain doc says that some docs will say it is rsd because they don't know what it is but it may not be. In the mean time I still think you need a pain doc/anesteslogist. You can still go to the specialists. Have you been to a neuro? This is an important doc to see this could be a seperate nerve condition like I have PN too. Especially with the tingling you are having.

seen the new knee specialist today
 

I seen the new knee specialist today. He said that it could be a pinched nerve in my knee or RSD. He is putting my on a nerve med. to see if that will work, if not then I go in to get tests done to see what is wrong with my knee and leg. I'm on the nerve meds. for about 3 weeks. So it is back to the waiting game. I go in next week to start getting shots in my knee to see if that will help with the pain too.

Ruby

I dont't have RSD
 

I seen the new knee specialist today again. He said that there is no reason for the pain that I have in my knee and leg. He said that I don't have RSD while he was walking out the door. And he said that I don't have a pinched nerve any where. Thanks everyone for talking to me. And I will let you alone now, since I don't have anything wrong. Sorry for bothering you.

Ruby

Not sure...
 

I have chimed in on this or not yet..but Rubvk2.. are you feeling a bit upset..perhaps sad now?? Possibly fustrated and back at square one?? I see it..and you are NOT a bother..We all here care and take care of eachother....Let my first say we all here you in that fustration can be our middle name any given day..Don't let the Dr.'s aggravate you..You know you still have pain... possibly you don't have RSD, can I say..you really don't want that..as I have it beginning in my rt. knee, 3 yrs. ago.....and I am not allowed to swear on here but it hurts..now many places on my body hurt due to it's spread..but this does not ..does not rule out that you should get discouraged and not push to get an answer to what it really wrong..Allow yourself to feel discouraged only for a bit..thats enough..now get those boots on and march yourself to another Dr...one who doesn't say things about your health as he walks out the door..rude! ..And don't stop until you have a compassionate Dr. who can supply you answers and take care of you....


KS..Kathy:)

depressed
 

I would go see another doctor, but I don't have the money and my husband says that it is fine with what the doctor says and to leave it at that. He says as long as the neurontin works for the pain that is good enough. I'm going to go in and have the supartz injections in my knee soon. After what that doctors said that I don't care anymore. And it seems like I don't care about anything anymore. I'm going to just let it go and deal with it on my known. My family doctor will give me the meds that I need. I'm going through the same thing as I did with my back problems. The doctors said that is all in my head too, and I still have pain in my back. But I deal with that on my known too. I try not to let anyone know if I hurt or not, because it does not do any good to let people know my pain. And I just didn't want to bother you people with my pain when your pain is much worse than mine. Thanks for listening.

Ruby

Hi Ruby - I'm sorry that you are so frustrated. Pain is a scary thing in and of itself and then when you have different doctors telling you different things that just puts stress on you, which in turn, causes more pain. It's a vicious cycle. When I saw that you were going to get the shots in your knee I had to respond. PLEASE be very careful! You had a couple of doctors suspect RSD and if so, a shot to that area can cause it to spread.

I had surgery on my wrist over 2 years ago and the only symptom I have is burning pain. I've had 2 doctors suspect RSD (Neurologist/Pain Dr.), 2 Hand Surgeons say absolutely not RSD, 1 ER doctor even told me to get an attorney ha! However, I guess my point is to show you that you don't need to have all the symptoms and most doctors do not know what they are dealing with.

Please do not give up. You will find a way!

Tiff

My rsd I think took awhile to get dx cause it did not have all the symptoms and how i got it was different too. Then I saw a couple of RSD specialists who also said you don't have to have all them to have rsd. Many of these specialists like podiatrist are not that familiar with RSD. In the start of this I became worse because of being put in an airboot and had no injury for ex. Did you say if you have been to a neuro? I think this is a key doc to preform dx tests to rule out other conditions. I have PN and RSD so sometimes there is more then 1. Also a pain doc/anesetesolgist who deals with rsd. Also you said you are going to get an injection in your knee? Is that your RSD area cause if RSD you are not supposed to inject into the area. Hang in there

Hi Ruby. You need to have an epidural or spinal block done in the lumbar region, on the effected side. It will tell if you have RSD. It puts your sympathetic nerves system to sleep. If done correctly and soon after your injury it could "reset" the system. I've had RSD since 88'. Started in my left knee then spread to my right leg.Now I have it in both legs.
Ask your Doc about a thermagram test on your legs. It takes a thermal picture of your legs and if the RSD leg is markedly cooler, and has restricted blood flood, that's RSD. Read up on what your sympathetic system is. It's part of your "fight or flight" system. AND heat is your friend, NOT ice. Raise your leg up to reduce swelling. Hope this helps.

Re/Might have RSD
 

Ruby,I only have 1 quick question for you. Did your Neurologist give you an EMG?? That is how I found out that I had RSD after 3 years of going back and forth to many DR's. Breezy55. :grouphug: