[justwantanswers]

For months now I have been suffering in pain since my injury back in 03/2011. I fell at work and have been out since. So of course you can imagine the headache I am dealing with W/C. I was originally seeing an orthepedic Dr who was my employers panel Dr. After requesting to be seen by a different phsyiatrist then the one they are connected to due to previously seeing that doctor and discontinuing my visits with him for a completely different reason. Since I did not want to go to their referring Dr they released me from their practice and told me they had no futher treatment options for me.

Comp had told me I couldnt make my own appt. Because I had no referral, which wasnt true at all, my lawyer advised me after 3 months I can see whatever Dr I please. In the meantime comp set up an IME appt by a dr who had previously told me they do not accept workmans comp (suspicous?) That Dr said I was 100% healed, even with my limp and pain and inability to walk for more then 20 minutes.

I began seeing a physiatrist two weeks prior who had diagnosed me with a knee sprain with an element of RSD. I even have the dr report stating that. I had never heard of it before but he told me to do reasearch on it to understand it more. Six months after my accident I finally had an answer that made sense and confirmed my stmptoms. So thenbattle between comp and my lawyer and dr vs dr began. Dr wanted to see me in six months unless anything changed.

It got worse when school started back up so I called and made and appt and was to see his PA. Continuing to see my phsyiatrists my symptoms began to get worse and began to spread.When I went back I had seen his PA a second time and she said that he never said that I have that and they were going to send me back to therapy. I stuck out six weeks of pool PT suffered through it all but did what I could to show I want to get better. The Rx for therapy stated knee sprain. My therapist by the end had asked if anyone had mentions RSD? She said she filled out the evaluatiion and would send it to my Dr. Because it got worse when my next appt came around they ordered an ct scan and an emg, both showed nothing. Now my first appt I saw the Dr the next two I saw his PA? this last time I went back and had to see the Dr requested by my lawyer because of mediation at the end of the month.

When the Dr entered the room he had asked me if I was still doing my exercises, well if he looked at my chart he would have seen that I just finished 6 weeks of pool therapy and would have seen I cant do much in the pool without pain, nevermind on land. At this appointment I couldnt hold it in anymore I broke down in tears! Im sick of the never ending pain, the insomnia, and the depression... Not to mention all the other symptoms on top of continous pain. I asked flat out what about me having RSD? He said that my bone scan was normal, which is not true, I had a diffused uptake patter in my right knee. He said it wasnt enough to prove RSD? He told me I needed to loose weigt and continue to excercise and it would get beter. Before that appt I had lost 20 in two months and the pain got worse, so I truely do not believe that, Im sure, y weight doesnt help but its not the cause of my pain...it wasnt there before I got hurt.

Now after reading all the other threads and from the research I do in the hours I cant fall asleep, a bone scan is only 55% accurate in diagnosing it. I had the scan done four months after my accident and it showed uptake then, and that wasnt enough?! Now I know a phsyiatrist is a PM Dr. They specialize in managing pain, not diagnosing it. I need to find a Dr in Pennsylvania that speacializes in RSD and accepts W/C. As I said before mediation is coming up and if I have RSD i know I cant settle in my medical compensation.Maybe my Dr is right, I dont have it and one can only hope they dont, but its the only thing that makes sense wit all my symptoms, and I want to be certain wether I do or dont, because if I do, Im headed towards one year since te accident and I would like to get it treated ASAP and only hope for remission... Pleas let me know of any good Drs in the Area!!!!!

[catra121]

Unfortunately...I cannot help with finding doctors in your area because I do not live in your area. But I hope someone chimes in soon with some recommendations. That said...I am so sorry to hear what you have been going through and I am sad to say that your story is fairly common for those of us who suffer from RSD.

My RSD is the result of a work accident too...so I know that dealing with WC is a frustrating and normally not a very rewarding experience. It is important to not let the stress of this take over your life because it will only make RSD worse. I know...eaiser said than done...but please keep your focus on your health and getting the treatment you need to get better and let the lawyer deal with WC. That said...you cannot just sit around and wait for things to shake out on that front.

What other symptoms do you have aside from the pain, sleeplessness, and depression? Does your leg get ice cold or really hot to the touch for no apparent reason? Have you noticed changes in color, hair growth, or the nails on your affected limb? Does it swell up really big for no reason? Not everyone with RSD has all of the symptoms, so absence of some doesn't mean it is not RSD, but they can be critical to the diagnosis of RSD. Also important...there is NO TEST that can confirm a diagnosis of RSD...it is a clinical diagnosis based on your symptoms. Things like bone scans or sympathetic blocks can be useful tools to help diagnose...but not everyone with RSD will show abnormal results on a bone scan and not everyone with RSD gets relief from blocks. The only way to diagnose RSD is if you have the symtoms (there are 4 categories I think and you should have at least one in 3-4 of them...you've already mentioned two in your original post). If a doctor claims that there is a test that can tell you 100% that you HAVE RSD then they are misinformed. You can rule out RSD by having test results that show it is something else causing your symptoms...but it cannot be diagnosed because everything else has come up negative either.

That said...you NEED to find a new doctor. I don't know the WC laws in your state...but your lawyer should be able to go before a judge and ensure that you are not prevented from seeing another doctor. If your state only allows you to see so many doctors and for only those medical expenses to be covered, then maybe you need to consider (though discuss this in detail with your lawyer before doing anything) using your own health insurance to see another doctor who specializes in RSD. Realize that there is no guarantee that you will ever get reimbursed by WC for your OOP costs...but at least you may be able to get the medical care you need before it is too late for many treatments to be successful. Your health needs to come first and that needs to be YOUR priority. If this is in fact RSD then there is no cure and your best shot at remission is to get treatment as quickly as possible. It's easy to get caught up in saying they SHOULD pay for it...but if you sit around and wait for that to happen then you may be too late to get treatments that would have helped you if you had gotten them sooner. Do not mess around with this...get the medical care you need so that you can get your life back (hopefully) and then your WC case can be dealt with by your lawyer. Discuss all of this with your lawyer of course, as he may have some legal remedies that could speed up the process of getting WC to do what they should, but make it clear that you cannot wait months or years to get the treatment you need. Health needs to be your number 1 priority.

Good luck to you. If you have any other questions about RSD or even if you just need to vent, please post them. There are so many good people on this board with a variety of experiences and opinions. I don't know where i would be right now if I had not found this place.

[justwantanswers]

Thanks Catra for responding!

The other symptoms that I experience are as follows:
Constant- Pain level is always 7-9. Swelling in knee, calf, and lower thigh. A constant aching pain in my entire leg including my foot. It originally started as just my knee and has spread all the way to my toes and into my lower thigh. I have very limited mobility as much movement causes the pain levels to rise. I can never fall asleep when I’m tired because the aching is so bad and I just can’t get comfortable in any position. From the constant swelling I have developed a loud clicking noise in my knee when I walk. I can not put full pressure on my leg without increasing pain, so therefore I have to walk funny.

Throughout the day- I get spasms starting right below the back of my knee, worse than the feeling of a charlie horse and I can not do anything to get it to calm down except let it works it way out. My leg twitches, anywhere from in my calf, above my knee my thigh. pretty much all over my leg. When sitting for more than 20 minutes when I get up my knee, ankle and foot are very stiff and I have to walk off the increasing pain until it loosens up a little. Randomly Ill get sharp pains in my knee, and throughout out my entire leg. The pain increases when it is damp, going to rain, really cold out, or snow is on the way.

Throughout the night- Pain level rises and swelling is at its worse, that’s when right above my knee and my lower thigh begin to get red/purple blotches and the burning feeling begins, then it becomes extremely sensitive to touch (it is uncomfortable to touch all the time but I can tolerate it for the most part.) I can never get comfortable and my leg just jumps, if that makes any sense, as if someone electrocuted it and it jolted.

These are all the symptoms I wrote down as I experience them. They have progressed since the accident. When I fell they placed my knee in an immobilizer and I had crutches, they started me in Therapy 4 weeks later. I continuously complained of pain to my therapists but was told if I don't work through the pain it will never heal. After 3 weeks of therapy that’s when the symptoms began the onset and the pain was way too intolerable to continue. They sent me to get and ultra sound to check fro blood clots, all normal. Two months later he sent me for the bone scan (July 2011.) They said it was normal, although it have a pattern of uptake in my right knee. That’s when they referred me to a physiatrists, released me from their practice, and here I am today, still suffering and more aggravated than ever.

The finally just gave me something for pain. I started 10mcg Butrans patch yesterday, Bacoflen for the spasms, and Cymbalta I guess for pain too? Not sure he just prescribed them didn't explain much to me. I have concerns taking anything because I am on 5 daily meds already and ad those 3 and now I’m up to 8 meds a day, and I’m only 23.

I am going to take your advice because it was very helpful, I will be calling my lawyer first thing Monday morning and have a very long chat with him and see where it goes from there. Hopefully I can get to see a new Dr before Mediation on the 27th of this month.

Thanks again for you advice I truly appreciate it. And I’m sorry to hear you suffer from RSD also. If this is what it is then I know what your dealing with. I will definitely be an active member now, to know I have the support and I can help support others will be a lot of help psychologically.

[justwantanswers]

Ps. As for the hold or cold, origianlly my leg was always warm compared to the rest of my body, I would always go to my knee when my hands were cold lol, but recently it's turned really cold, actually since I started back to therapy.

[catra121]

Wow...based on all those symptoms it does sound like RSD. I'm not a doctor of course...but all of the things you mention are classic RSD symptoms and I have had all of them at one point or another. Physical therapy initially did not help and I continued to get worse and then they had me immobilize my leg and put me in one of those boots. This was all prior to the RSD diagnosis and as soon as the doctor suspected RSD he got me out of that boot, got me started on physical therapy (geared towards treating the RSD so it was different than what was tried before), and most importantly got me started on the proper meds for RSD.

Sounds like you are on some of the normal ones to start with, but if they are not helping enough for you to continue with physical therapy then you should discuss with the doctor trying different ones. I don't know what other meds you are taking but they usually include an anti-inflammatory med in addition to the ones you are taking and try an antidepressent to take at bedtime to help you sleep better. You should only be put on any new meds one at a time so that you can determine which ones help, which ones don't, and what (if any) side effects they have.

I understand your concerns with taking so many meds. I'm only 28 and was 25 when I first got RSD. The longer I have had RSD, the more things I have found to help me control the pain besides just medications. This board has been a great resource for those types of things. One thing you could maybe discuss with the doctor or physical therapist is trying out a TENS unit to see if that helps with the pain. It doesn't help everyone but it has been a real lifesaver for me and my last physical therapist was able to get me a portable unit that I can wear while I walk. It doesn't completely take the pain away...but it knocks it down to a 5-7 vs the 9-10 I had constantly before...which was enough relief to allow me to really do the physical therapy exercises.

And one thing to keep in mind while you are waiting to see another doctor is that you do need to do the physical therapy EVERY day. Believe me...I know how hard this is...but you have to make yourself MOVE that leg throughout the day. The physical therapist may have you doing exercises that are too much for you to do on your own...if you are still treating with one I would ask them at your next session what are some exercises you can do while sitting.

I was stuck in a wheelchair for months earlier this year and I spent several months just doing exercises while sitting before I was able to progress to even simple standing exercises at the counter. But if you do these things daily and throughout the day (not allowing yourself to immobilize that leg for long periods of time) trust me, you will see improvement with the pain. But getting this pain under control is key and will make the physical therapy much easier to do.

There's lots of other stuff I could say...but I don't want to overwhelm you too much. In case you haven't noticed...I tend to ramble on and on. But focus on taking things one step at a time, know that you are not crazy no matter what the doctors day (your pain IS real), and if you feel yourself getting overwhelmed or stressed just stop, take a deep breath, and refocus on your main priorities. Don't lose sight of the main goal and let yourself get all caught up in the legal problems. Focus on your health and surround yourself with people who love and support you.

Best of luck and welcome to NT.