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Old 04-07-2011, 12:15 AM   #1
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Looking for encouragement, and maybe a little sympathy...

As I stated in a post a few months ago, I go to military dr's at a military base. My husband is retired military, so that is my financial choice. So after being bounced through several different clinics and a referral to an outside pain management, who then sent me back to the military after he felt he had done all he could for me. I then went to 2 more different departments in orthopedics before sending me back to family practice ( all in the same hospital)to get a referral to Internal Medicine again military. I landed a real winner this time though. He decided after 6 other dr.s had diagnosed me with RSD that he wanted to play Superdoc and make sure that is what I had. I mean I had been to so many specialists, and now I was with a phd who didn't know RSD from a hole in his head. I have RSD in my knee with pain in my shin, and up into my thigh. So he asked me a bunch of questions that lead me to believe that he really had no idea what RSD is. All the while looking it up on his computer and complaining about heavy hitter pain medication I take I take lyrica ,vicodin and substitute lortab for the really bad days, and how he hates to prescribe those. Then made me get on the table. Get ready to cringe, he grabbed my knee and tried to manipulate my knee cap. I screamed sooo loud there were nurses coming from the hallway to see if there was anything they could do. Did he stop touching me? NOOOOO!!!! He kept pushing all around my knee and I kept screaming. Finally he let go, gave me a tissue to sop up my tears and runny nose. I sat up sobbing and he said are you ready?? " I am pretty sure the other doctors are right. you have RSD " He gave me the referral to internal medicine as the Orthopedics surgeon had suggested and wrote me just enough refills to get me to my first appt. with internal medicine, all the while complaining about prescribing narcotics. No apoligy, no nothing. Of course I went straight to patient advocacy to report him. Not much can be done, again military doctor. But here is the straw, I came home and took one of my lortab. Next morning, woke up to finger sized bruises around my knee. Tried to take photos of them, but they just didn't show up on camera. So I am looking for a little encouragement, tea and sympathy it was my worst doctor experiences in this 2 year battle with this awful painful disorder. Wish me luck I go see internal medicine in 2 weeks....

 
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Old 04-07-2011, 02:44 AM   #2
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Re: Looking for encouragement, and maybe a little sympathy...

Tina,

Sit down girl! lets have some Tea and talk. Oh sweetie I am so sorry for what you are going thru. It is very common for us to see a bag full of docs. I cant even count how many docs i haveseen. You have to keep searching for that right person to help you. Well you changed my mind on Military Docs. 6 months ago, there was rumors that the Military are getting all the good docs. RSD is very common among injured soliders. My husband is retired from the Airforce and I still wont go to the base docs. I am on SSA and I wont use medicare either.

Your painful experience with that Quack is common. Common but not normal. Yeah! buddy had to tell a doc one time that if he touched me again he would be nursing a part that he cared for very much. I got a dirty look and get out of my office. He didnt even charge me for appointment. The way I look at it is. I am the customer and the doc is being hired by me to do a services. You work for me- I dont work for them. If i dont like them I move to another. I dont ask for meds or anything special just help with my primary care. I have my pain undercontoll just not the other stuff that goes along with it. I fear docs and I will only go to Urgent care and most of the time I canpick out an infection.

Dont you just hate waiting for an appointment? 2 weeks is nothing. I have waitined 2 months to see a doc once. And he was dummber than dirt. I asked question after question and he says well, it seems like you have done way too much homework maybe you should become a Dr...whaaa!?!?! what? yeah! tell me that you putz.

I guees its not like one University is teaching all the ignorant docs.Then i really question if that Doc was an A student or that one that made it on prayer. Sometimes they have to be rouch roughly but a compassionate dr will say..this may hurt a bit but i have to this to make the conclusion. Naaa! they wont. Let me twist here and yankhere. Oh sorry I made it worse.

I am almost done with my Tea..are you? Do yourself just one thing. I mean you have 2 weeks right? Post another thread asking for a RSD doc in your area. You know you can search for RSD and go to the non profit organizations and they have lists of docs too.

Look, you are going to be ok. Not perfect but ok. You seem like a strong person. Just keep in mind there is no cure ONLY symptom management.Alot of your outlook depends on you. RSD loves stress, so destress and take it easy. becareful with PT and rest when you need too. Once you get in with a a real pain dr (cuz there are fake ones out there that think they can do it) the narcotics will increase over time. When i first got on methadone and oxycodone they said that I would be on them the rest of my life...OHHH! Heck No, it was not worth it for me. It made insane and out of control. Yes it is very hard to deal with pain without some pain meds but I have too. What does not kill me makes me stronger. I think! sometimes it makes me weak but I get up 3 days later and rock on.

My hands are killing me. I have to end this post. Besides guess who woke me up at 3 am. Yup! you guessed it RSD! He wants to play and i dont. Ive got my SCS's up high and my legs are still hurting and have some massive head pain. My teeth hurt so bad I need to have a lip removal. Ewwww! that would be gross. Hey baby..come here and give me a kiss. Ahhh! i always find the humor in pain.

K

 
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Old 04-09-2011, 07:39 AM   #3
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Re: Looking for encouragement, and maybe a little sympathy...

I know how you feel. Went into one hospital for an infusion nurse grabbed my RSD hand and pulled it towards him with out saying a word. Screamed and left crying in pian for over 2 hrs. They just put the infusion in the other hand, nobody offered to clean me up, wife did it when she came back from the cafeteria.
6 days later ended up in the acute care ward of another Hospital, the infusion caused an infection upto my shoulder which in turn caused 6 or 7 DVT's. Told the admitting doctor about RSD and she couldn't touch my right hand, twice she tried to grab it and I had to pull away. Asked if I wanted pain killers and I said yes if you got something new and really strong. Gave me 1 paracetamol and 1 codiene then nurse gave me a warferin injection.
Laid on that bed and thought this is my life now, the most dangerous place for me is Hospital, this is no way to live waiting for this to spread so I got up and walked out, refused to go back even though they think I might have others iin different parts of the body.

Last edited by Kev629; 04-09-2011 at 07:40 AM. Reason: spelling

 
Old 04-10-2011, 05:07 PM   #4
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Re: Looking for encouragement, and maybe a little sympathy...

Kevscar,

I run from docs too....I only see my pm doc......if im sick enough I go to urgent care and stick to the facts .....I like to be treated and streeted when I know what's wrong with me.

Although im not on any pain meds I must venture out and get help......ie light pt....water therapy ....getting even healthier and staying active and positive within Rsd's rules and guidelines ....I have to do this...hang in there..

K

 
Old 04-10-2011, 06:49 PM   #5
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Re: Looking for encouragement, and maybe a little sympathy...

ohh my god sympathies.. my father got all of his treatment at the va out here..none of them were worth a damne, he first went to them re pain in his back due to the injury he got while serving..but hey nothing is wrong he didnt need treatment.. years later he was still trying to get treatment till finally some one did the right thing and tested him..and with all of his routine visits and visits regarding his pain they some how missed cancer in his prstate.. so instead of doing a complete work up they preformed surgery..and while in there they found cancer was growing in his injured back making the pain that much worse...years and years of growth...by the time they did the correct work up and got a treatment plan it was in his lungs pancreas brain stomach, throat etc.. needles to say he died..I dont like the VA.. just remember they exist to treat you, and you know your body,,government dr,s are not god they are the drs who won the bid by being the cheapest..that said they are still drs who must do no harm..keep a file of all tests and drs notes you can get your hands on..the charts belong to you but they can charge you for copies..I believe there are web sites out there that can help you decipher the drs notes and tests..and even help you figure out what questions to asks and what is the next step logically..keep those drs honest ,,my aunt taught me that..her husband goes to the va now and she makes sure he gets the correct treatment...i wish you the best
be well, be smart, and god speed

 
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Old 04-11-2011, 01:12 PM   #6
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Re: Looking for encouragement, and maybe a little sympathy...

I feel foer you, and am sorry you had to go throgh what you did. My dad was 100% disabled veteren. He went through the continuous ginea pig proceeders for years., so I have some understanding of your problem. I'm only 10 weeks into this, my PT is the person who thinks I have RSD, See my doctor Wednesday, so I'm sure the merry-go-round ride will begin. Hang in there. I know it's hard. The pain never stops even with medicine, and sleeping is hell. I don't know if the pain is worse or if laying in the dark gives you time to concentrate on it. God -bless

 
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Old 04-12-2011, 12:17 PM   #7
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Re: Looking for encouragement, and maybe a little sympathy...

Knock! Knock! Tina!?!?!?! you home? I See you moving! Hey who turned the light off.......TINAAAAAAAAAAAAAA!

Hope you are ok!!!!

Peace,
K

 
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Old 04-15-2011, 02:58 AM   #8
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Re: Looking for encouragement, and maybe a little sympathy...

I am ok, thank you for asking. I received a phone call asking if I could schedule internal medicine for last week. I went, but I took my loud voice with me, my husband, who is not afraid to say "get your hands off of her" while all I can do is scream... We met a very nice woman doctor. I explained my family practice fiasco before I even got on the table. My husband than said "you might as well know up front that if you touch her knee I am going straight to the hospital commander and file patient abuse charges." I love my husband!!!! I told her that I was looking for a doctor that understood RSD and asked if she was familiar with it. She said she knew a little but was willing to research it. I told her that so far I had already been diagnosed by several doctors and PT's and I knew that is what I had, but I needed a home because I had been tossed from this dr to that one. She looked me in the eye and said you have one now. She then called her nurse and told them to transfer all of my files from the family practice clinic to internal medicine and to put on the transfer that I would not be back to family practice. She went over my medicine with me, took in all the info I had researched and the suggestions I have read here that were working for others. She took notes on it all and said for me to get some blood work and lab work done, put me in for a osteoporsis (sp?) check, and also gave me an ok to get a mammogram (have to have a dr put you in the system for one on base) she said lets get you up to speed on everything else so we can concentrate fully on the RSD. I then told her the muscle twitches were getting bad and the pain was spreading after 2 years. So she is going to look into combining the lyrica with something called topamax (?) to see if that would be a willing combo, if not she will find something else. She also wants me to see a neuroligists, but all results of everything comes back to her so she can work with me as my primary care giver. I have my next appt with her on May 9th when all my results should be in. So far I think she is going to work out. At the end of the appt. I thanked her for not touching me. She said she could tell by the look on my face and the seriousness in my husbands tone that I had been through hell already, she did not want to add to that. There really is some kindness left in the world.
On another note, for those just starting the long and bumpy road of RSD. I have a tip that might help others and since this forum has helped me I want to share. When I first fell down the stairs and got the injury to my knee, I immediately put a compression sleeve on my knee to help support it. Later it help protect it from being bumped or brushed by anything. I have had this sleeve on my knee for 2 years almost 24/7. Several of my doctors say that it has helped desensitize it to some degree. I am now in the market for an ankle to hip sleeve since my pain is starting to spread. My new doctor says that if it worked for my knee it might work for the rest of my leg. It doesn't take the pain completely away, nothing can. But if we catch the leg fast enough with a compression sleeve, I might be able to desensitize it a bit too and any thing that takes away part of the pain is sooooo worth it. Just protecting it from being bumped in everyday activities to me is worth getting a full leg sleeve. So I want to suggest to try a sleeve on any limb that may have the new beginnings of RSD. It might help. Everybodies road is different with this, but if I can help one person feel less pain than I have repayed a little of the help that this forum has given me. Of course check with your doctor first. Good luck and will keep you posted with my new dr.

Last edited by Administrator; 04-23-2011 at 05:45 AM.

 
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Old 04-16-2011, 04:50 PM   #9
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Re: Looking for encouragement, and maybe a little sympathy...

Glad to hear you have finally found a Dr. who listens and is willing to go the extra mile. I sincerly hope that you can find, if not remission, at least some relief from this. My PT put a compression sock on about two weeks ago, not sure if it does anything for swelling, but it does help with the surges(my term) that i feel in my foot. Wearing it, I feel a constant burning, cold, tingling, as opposed to surges in all those feeling. Not a cure, but it does help. Would also pass this on to others. I believe it does help also. PT is starting agressive training. They are trying to get my muscles streangthened and regain my motion in my ankle and foot. I'm game. If this turns out out to be something other than RSD, then great. But at least I'm getting things done that will help either way. My prayers are out there for everyone who is suffering. From RSD or whatever. Pain is relative to the person suffering it, and no one has the right to belittle you. I will fight, I will succeed. This battle is personal, and I won't go down without a fight.

 
Old 04-16-2011, 11:31 PM   #10
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Re: Looking for encouragement, and maybe a little sympathy...

I absolutely know what you mean. I limp because of my knee. Recently we were planning to go where I would be required to do a little bit of walking. I was asked if I wanted to get a wheelchair. I said absolutely not!!!!! I will walk as long as I can walk. I may be slow, and I may be in pain, but I will walk and get there on my own 2 legs as long as I can put one foot in front of the other. Just give me the extra time to get there. I am stubborn, I am proud, I will do it. RSD doesn't have me, I have RSD. I have all the time in the world in the future to think about wheelchairs. Just don't put me in one prematurely. Just my choices about my own battle. Not condemning anyone for their choices. Every battle is different.

 
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Old 04-17-2011, 12:27 AM   #11
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Re: Looking for encouragement, and maybe a little sympathy...

I totally hear you. When we start letting the pain win, then we have lost before we started. Like you, I don't intend to take this laying down. I walk even when I hurt. I do the exercises even when I would rather cry(most of the time I do). You keep going RSD Tina. You haven't lost unless you give up, I don't intend to ever give up. We all have choices to make. They are personal to us, after all, we are the ones who will have to live with them in the end. I hope, the decisions I make, I can stand by them. When I look in the mirror it is ME i see, and I have to live with that person. And at the end, it will be ME that finishes it. No-one else can go there with me. And I pray that I can be proud of the ME that finishes it. Hang in there. Knowledge is power. Power is hope.

 
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Old 04-18-2011, 01:59 PM   #12
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Re: Looking for encouragement, and maybe a little sympathy...

hey .. i like your husband ..that was a great move.. my drs whom are starting to go in circles i have to put in thier places ..just got a new vasc surg. tdy who needed schooling on touching me.. pain can some times feel out of control... but you are in charge absolutly.. my spine specialist tried bumbing neurontin up on me ..i sd i dont see what its doing to me exept maaking my mind cloudy upsetting stomach and making me bloat.. rght then he sd i bloat prob because i might have a bad heart ..the drug is fine.. well i had another dr appt for later tht week i stopped the pills and lost 3 inches off my waiste showed results to nxt dr and guess what no more neurontin... no more cloudyy head..and upset stomach.... so remember you know your body you have had it since birth and you know what feels right and or wrong..take charge..congrats for now
and good luck for the future......

 
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Old 04-18-2011, 03:17 PM   #13
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Re: Looking for encouragement, and maybe a little sympathy...

All treatments seem to be trial and error for most of us and unfortunately we have to sometimes suffer side effects, additional pain and frustration to find out what works and what doesn't. I have been so fortunate to have an incredible hand surgeon and his whole staff. They are compassionate, yet treatment aggressive. I am also a big part of my treatment, trials with medications etc. I do not take narcotics for pain (just personal choice for me) so when I hear of a medication I ask my Dr. if it is worth trying. Last week at my visit I inquired on Topamax and he was all for trying it. He also (on his own) very excitedly said to me "I am going to get you a tens unit for at home, so you can have some relaxation in your daily life". I thought, wow, that is so awesome to still think of me as a human being with feelings other than big $$$$$. I do see a PM Dr. for injections, bu not really thrilled with those or her.

Having a good team, including knowledgeable doctors, supportive family/friends and hopefully some sort of relief combo, whether it be PT & meds, Injections & PT etc..is key to us being able to focus on accepting what we have, without giving in completely to the pain. I have learned quickly that the less I talk about RSD with friends/family, the more normal I can feel when trying to have some sort of life. Stress and dwelling on it is a major downer and I am not ready to be down all the way around. I am 40 yrs. young and have way to much life left to be over run by this party pooper illness!

Thank goodness for this forum and others, at least we can talk to others who live with this as well.

 
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Old 04-27-2011, 05:41 PM   #14
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Re: Looking for encouragement, and maybe a little sympathy...

[QUOTE=RSDTina;4724949]As I stated in a post a few months ago, I go to military dr's at a military base. My husband is retired military, so that is my financial choice. So after being bounced through several different clinics and a referral to an outside pain management, who then sent me back to the military after he felt he had done all he could for me. I then went to 2 more different departments in orthopedics before sending me back to family practice ( all in the same hospital)to get a referral to Internal Medicine again military. I landed a real winner this time though. He decided after 6 other dr.s had diagnosed me with RSD that he wanted to play Superdoc and make sure that is what I had. I mean I had been to so many specialists, and now I was with a phd who didn't know RSD from a hole in his head. I have RSD in my knee with pain in my shin, and up into my thigh. So he asked me a bunch of questions that lead me to believe that he really had no idea what RSD is. All the while looking it up on his computer and complaining about heavy hitter pain medication I take I take lyrica ,vicodin and substitute lortab for the really bad days, and how he hates to prescribe those. Then made me get on the table. Get ready to cringe, he grabbed my knee and tried to manipulate my knee cap. I screamed sooo loud there were nurses coming from the hallway to see if there was anything they could do. Did he stop touching me? NOOOOO!!!! He kept pushing all around my knee and I kept screaming. Finally he let go, gave me a tissue to sop up my tears and runny nose. I sat up sobbing and he said are you ready?? " I am pretty sure the other doctors are right. you have RSD " He gave me the referral to internal medicine as the Orthopedics surgeon had suggested and wrote me just enough refills to get me to my first appt. with internal medicine, all the while complaining about prescribing narcotics. No apoligy, no nothing. Of course I went straight to patient advocacy to report him. Not much can be done, again military doctor. But here is the straw, I came home and took one of my lortab. Next morning, woke up to finger sized bruises around my knee. Tried to take photos of them, but they just didn't show up on camera. So I am looking for a little encouragement, tea and sympathy it was my worst doctor experiences in this 2 year battle with this awful painful disorder. Wish me luck I go see internal medicine in 2 weeks....[I'm so sorry you had this horrible experience, my 14 year old daughter was diagnosed approx. 4 weeks ago and we're learning daily what a horrible disease this is and my heart goes out to you and all sufferers experiencing this!] I will be praying that you get relief from the internist!

 
Old 04-27-2011, 05:48 PM   #15
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Re: Looking for encouragement, and maybe a little sympathy...

but you would save money on lipstick!!

 
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