Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Help please. I just don't know what to do. Welcome Cheryl and Peace to you and your hubby. My name is , I live in Crest Hill, IL, a little south of Chicago. I am sure you will feel at home here in the group, everyone if so nice, willing to help with advice on where to find good Dr. in your area, medicine updates, good at listening to others needs and concerns, and overall, just good people. This is where you can come to laugh, cry, vent, ask for help, and a prayer. Most of the time you don't need to ask, the prayer are just offered up. Generally speaking someone tells a funny on a daily basis on here just to keep the light side up. So post away, don't be afraid to ask anything. What ever you do, don't say you're sorry for writing a book or venting cause Tonia will catch ya! lol.... That's a bad word... and the only rule I think... Welcome again and Soft Huggs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Cheryl, Sorry to hear that you may have RSD. Have you been to a pain clinic? Sometimes you get better results there than with a regular physician. A neurologist may be another solution. Some doctors don't really know about RSD so try to make you feel stupid to take it off their own shoulders. Keep trying until you find someone is my suggestion. I have a friend that lives in northern Georgia that has RSD. She is not far from Chattanooga. Love, My Intro Hello everyone,My name is Cheryl, I live in No. Georgia with my hubby, my chihuahua and my two birds. I wanted to join this group because I believe that I have RSD and my doctors don't seem to want to do anything about it. The pain is constant but much more serious in the evening. It burns like fire. I hate taking pain meds but I am relying on them more and more. I also have Fibromyalgia but that is not bothering me very much at this time. I have read all the symptoms of RSD and I have almost all of them. I fell on my butt about 6 years ago and I have had this problem since then. The only way I can get comfortable is in bed lying on my side or lying on the living room floor on my side. Even my acupuncturist who can fix just about anything I have, cannot seem to make any progress with this particular pain.Help please. I just don't know what to do.Peace, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Hi Cheryl, Nice to meet you and welcome to the group. I see you are a pet lover just like me and many others in this group. I just got a new puppy for my birthday last week. He is just adorable. I think the first thing you have to do is find a dr that treats and knows about RSD. Someone here might be able to help you with that. It sounds like you are in a great deal of pain. Some of that might be the fact that you have not gotten a proper dx or even treatment for that matter. So that would be my first suggestion, to get a new dr. I am sure someone here will know a good dr for you to go to. I live in PA and unfortunately that is a little far from you. I am looking forward to getting to know you better. Take care and have a good night. Hugs, babs My Intro Hello everyone,My name is Cheryl, I live in No. Georgia with my hubby, my chihuahua and my two birds. I wanted to join this group because I believe that I have RSD and my doctors don't seem to want to do anything about it. The pain is constant but much more serious in the evening. It burns like fire. I hate taking pain meds but I am relying on them more and more. I also have Fibromyalgia but that is not bothering me very much at this time. I have read all the symptoms of RSD and I have almost all of them. I fell on my butt about 6 years ago and I have had this problem since then. The only way I can get comfortable is in bed lying on my side or lying on the living room floor on my side. Even my acupuncturist who can fix just about anything I have, cannot seem to make any progress with this particular pain.Help please. I just don't know what to do.Peace, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Hi Cheryl, Glad to have you come into the group. There are lots of us to talk to and vent to if needed. I live in Utah and was diagnosed after having foot surger in Feb of this year. Hopefully someone on the board will be able to direct you to a doctor who knows and treats RSD and then you can find out for sure if that is what you have. From what you say, it sounds as if it could be RSD and the sooner you can start treatment, the better. I will keep you in my prayers. Blessings, Betsy > Hello everyone, > My name is Cheryl, I live in No. Georgia with my hubby, my chihuahua > and my two birds. I wanted to join this group because I believe that > I have RSD and my doctors don't seem to want to do anything about it. > The pain is constant but much more serious in the evening. It burns > like fire. I hate taking pain meds but I am relying on them more and > more. I also have Fibromyalgia but that is not bothering me very > much at this time. I have read all the symptoms of RSD and I have > almost all of them. I fell on my butt about 6 years ago and I have > had this problem since then. The only way I can get comfortable is in > bed lying on my side or lying on the living room floor on my side. > Even my acupuncturist who can fix just about anything I have, cannot > seem to make any progress with this particular pain. > Help please. I just don't know what to do. > > Peace, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Cheryl, I have a friend that lives near Chattanooga. I will ask her where she goes or if she knows someone in that area. I'll hopefully be talking to her this weekend. Love, -----Original Message-----From: Cheryl Sent: Tuesday, September 09, 2003 8:07 PMTo: RSD-CRPSofAmerica Subject: My IntroThank you all so much for the welcomes. I have never been treated or diagnosed with RSD. My doctor took xrays a few times in the last 6 years but when nothing showed up on it, she said there was nothing they could do except try me on elavil which sometimes helps nerve pain. I already take so much medication due to the fibromyalgia, diabetes and thyroid disease that I did not want to go on another medicaton. I never even heard of RSD until I did some research on my own about the kind of pain I have been experiencing. I think I will take your advice and find either a pain clinic or neurologist. Is there really any help for this or is it just going to be more pain pills? If anyone knows of a doctor in Chattanooga that treats RSD, please tell me. Because the area of my pain hurts a lot when sitting, driving long distances to a doctor is very hard for me.Peace and less pain to all,Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Hi Cheryl, I am so happy that you are going to go to another dr. Your dr was very wrong about the xrays. It has been proven that we can have rsd even though xrays don't show a thing. I doubt that when I first got rsd that my xrays showed anything either. She really does not know much about rsd if she thinks that way. Let us know when you will be going to another dr. I wish I had one to recomment to you but I live in PA and that is way too far for you. Take care and have a good night. Hugs, babs My Intro Thank you all so much for the welcomes. I have never been treated or diagnosed with RSD. My doctor took xrays a few times in the last 6 years but when nothing showed up on it, she said there was nothing they could do except try me on elavil which sometimes helps nerve pain. I already take so much medication due to the fibromyalgia, diabetes and thyroid disease that I did not want to go on another medicaton. I never even heard of RSD until I did some research on my own about the kind of pain I have been experiencing. I think I will take your advice and find either a pain clinic or neurologist. Is there really any help for this or is it just going to be more pain pills? If anyone knows of a doctor in Chattanooga that treats RSD, please tell me. Because the area of my pain hurts a lot when sitting, driving long distances to a doctor is very hard for me.Peace and less pain to all,Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Cheryl, I have RSD, but have just been Dx'd with Fibro in July. And, what I'm finding out is that not only is RSD and Fibro often misdiagnosed as each other......but they are treated almost the same too! I'm on the exact same meds for both, as I would be for one or the other...just higher doses. Actually, the Psychiatrist that I see, who treats both Chronic Pain AND Depression, told me that what he has me on now is exactly what he has all of his patients with just Fibro on, or just has RSD on. I'm his first with both diseases though...so I'm his guinea pig on the combo end! lol I was the doozy of a patient though when I first started seeing him. I was severely depressed, due to already having a Dx of Depression before even having the RSD...Plus the RSD, Plus being Pregnant.....lol, and not being able to be on hardly any meds at all! I had to actually wait until Feb 17th, 2003 before I could be on any meds that would help me....and, on Feb. 20, he was finally able to put me on my first real meds since I was injured in Oct. 2000. Those were Topamax, Paxil and we finally was able to settle with Flexeril to help me sleep. He also ended up having to add Seroquel, another antidepressant, to help my depression and the Anxiety attacks that I started having in May. So, since I just finally also found a Pain Management doctor that will treat me that actually knows something in my area.....I just finally started some pain meds 2 months ago for the first time in 3 years also. These were started at the same time I was dx'd with Fibro..... So, I'm definately guessing that whatever meds that you take for Fibro, are going to be the same for the RSD. Here is the Main meds that are given for RSD: Anti-seizure: like Neurontin/Topamax/Gabitril Antidepressants Pain Meds: narcotic or Non-narcotic, patches Sleeping aids Muscle Relaxers But, not everyone takes all of these a day, or some takes more than these a day. It all depends on if they have more symptoms of the RSD, or less symptoms of the RSD....such as the spasms being worse or less, the swelling being mild or severe..... Like Fibro, With RSD, no one has the exact same symptoms, no one takes the exact same meds, no one has the exact same pains......We all handle it differently in our own ways. I hope I helped you out somehow! Tonia, Iowa ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 Thank you very much . Soft Hugs, Cheryl > Cheryl, > I have a friend that lives near Chattanooga. I will ask her where she > goes or if she knows someone in that area. I'll hopefully be talking to her > this weekend. > Love, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 Thank you for that information Tonia. I am on just about everything you mentioned except for the anti- seizure med. I also take a few more meds for other things. I tried neurontin once but it made my eyes go blurry and I couldn't drive or even read. I have an appt with my doctor today so I will ask her about some of the other anti-seizure drugs. One of the things that made me realize that this was not a fibro thing is that my husband told me that the area was very swollen. For the past year I have been swimming a couple of times a week at the " Y " and it has helped with the fibro, but now that the RSD seems to be getting worse it really hurts after I have done some swimming, which is so difficult because its about the only exercise I get. I will let you know what the doctor says. soft hugs, Cheryl > Cheryl, > I have RSD, but have just been Dx'd with Fibro in July. And, what I'm > finding out is that not only is RSD and Fibro often misdiagnosed as each > other......but they are treated almost the same too! > > I'm on the exact same meds for both, as I would be for one or the other.. > just higher doses. > > Actually, the Psychiatrist that I see, who treats both Chronic Pain AND > Depression, told me that what he has me on now is exactly what he has all of > his patients with just Fibro on, or just has RSD on. I'm his first with both > diseases though...so I'm his guinea pig on the combo end! lol > > I was the doozy of a patient though when I first started seeing him. I was > severely depressed, due to already having a Dx of Depression before even > having the RSD...Plus the RSD, Plus being Pregnant.....lol, and not being > able to be on hardly any meds at all! I had to actually wait until Feb 17th, > 2003 before I could be on any meds that would help me....and, on Feb. 20, he > was finally able to put me on my first real meds since I was injured in Oct. > 2000. > Those were Topamax, Paxil and we finally was able to settle with Flexeril to > help me sleep. He also ended up having to add Seroquel, another > antidepressant, to help my depression and the Anxiety attacks that I started > having in May. > > So, since I just finally also found a Pain Management doctor that will treat > me that actually knows something in my area.....I just finally started some > pain meds 2 months ago for the first time in 3 years also. These were > started at the same time I was dx'd with Fibro..... > > So, I'm definately guessing that whatever meds that you take for Fibro, are > going to be the same for the RSD. > > Here is the Main meds that are given for RSD: > Anti-seizure: like Neurontin/Topamax/Gabitril > Antidepressants > Pain Meds: narcotic or Non-narcotic, patches > Sleeping aids > Muscle Relaxers > > But, not everyone takes all of these a day, or some takes more than these a > day. It all depends on if they have more symptoms of the RSD, or less > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 Tonia, You're right about meds for fibro being the same as for RSD. That's what my rheumatologist told me too. Maybe that's why the fibro isn't so bad--because I was already taking the right things to keep it toned down. I mostly feel it in my hips and neck. And while I'm writing, thanks for the very kind words. I give Jesus the credit for making me the person I am, so thank Him if you like what He's done! Love, -----Original Message-----From: Tonia Sent: Thursday, September 11, 2003 12:25 AMTo: RSD-CRPSofAmerica Subject: Re: My Intro Cheryl, I have RSD, but have just been Dx'd with Fibro in July. And, what I'm finding out is that not only is RSD and Fibro often misdiagnosed as each other......but they are treated almost the same too! I'm on the exact same meds for both, as I would be for one or the other...just higher doses. Actually, the Psychiatrist that I see, who treats both Chronic Pain AND Depression, told me that what he has me on now is exactly what he has all of his patients with just Fibro on, or just has RSD on. I'm his first with both diseases though...so I'm his guinea pig on the combo end! lol I was the doozy of a patient though when I first started seeing him. I was severely depressed, due to already having a Dx of Depression before even having the RSD...Plus the RSD, Plus being Pregnant.....lol, and not being able to be on hardly any meds at all! I had to actually wait until Feb 17th, 2003 before I could be on any meds that would help me....and, on Feb. 20, he was finally able to put me on my first real meds since I was injured in Oct. 2000. Those were Topamax, Paxil and we finally was able to settle with Flexeril to help me sleep. He also ended up having to add Seroquel, another antidepressant, to help my depression and the Anxiety attacks that I started having in May. So, since I just finally also found a Pain Management doctor that will treat me that actually knows something in my area.....I just finally started some pain meds 2 months ago for the first time in 3 years also. These were started at the same time I was dx'd with Fibro..... So, I'm definately guessing that whatever meds that you take for Fibro, are going to be the same for the RSD. Here is the Main meds that are given for RSD: Anti-seizure: like Neurontin/Topamax/Gabitril Antidepressants Pain Meds: narcotic or Non-narcotic, patches Sleeping aids Muscle Relaxers But, not everyone takes all of these a day, or some takes more than these a day. It all depends on if they have more symptoms of the RSD, or less symptoms of the RSD....such as the spasms being worse or less, the swelling being mild or severe..... Like Fibro, With RSD, no one has the exact same symptoms, no one takes the exact same meds, no one has the exact same pains......We all handle it differently in our own ways. I hope I helped you out somehow! Tonia, Iowa ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 Just read about you having the Fibro and that is what I started with over 10 years ago. Take ALOT of meds and still hurt so bad I could cry. Now with the RSD in my right foot and not having anyone to give me blocks it is starting to go up my leg. Guess I will have to try harder to find someone just got to the point that the last person I want to see is a new doctor, another doctor, anyone wearing a lab coat, anyone that looks at me with a critical eye....well as you can tell just did not and still do not want to go somewhere else as am now at a new oncologist and dealing with junk and just have had it past, wayyyyyyyy past the top of this head. s Momma JoAnn Re: My Intro Cheryl, I have RSD, but have just been Dx'd with Fibro in July. And, what I'm finding out is that not only is RSD and Fibro often misdiagnosed as each other......but they are treated almost the same too! I'm on the exact same meds for both, as I would be for one or the other...just higher doses. Actually, the Psychiatrist that I see, who treats both Chronic Pain AND Depression, told me that what he has me on now is exactly what he has all of his patients with just Fibro on, or just has RSD on. I'm his first with both diseases though...so I'm his guinea pig on the combo end! lol I was the doozy of a patient though when I first started seeing him. I was severely depressed, due to already having a Dx of Depression before even having the RSD...Plus the RSD, Plus being Pregnant.....lol, and not being able to be on hardly any meds at all! I had to actually wait until Feb 17th, 2003 before I could be on any meds that would help me....and, on Feb. 20, he was finally able to put me on my first real meds since I was injured in Oct. 2000. Those were Topamax, Paxil and we finally was able to settle with Flexeril to help me sleep. He also ended up having to add Seroquel, another antidepressant, to help my depression and the Anxiety attacks that I started having in May. So, since I just finally also found a Pain Management doctor that will treat me that actually knows something in my area.....I just finally started some pain meds 2 months ago for the first time in 3 years also. These were started at the same time I was dx'd with Fibro..... So, I'm definately guessing that whatever meds that you take for Fibro, are going to be the same for the RSD. Here is the Main meds that are given for RSD: Anti-seizure: like Neurontin/Topamax/Gabitril Antidepressants Pain Meds: narcotic or Non-narcotic, patches Sleeping aids Muscle Relaxers But, not everyone takes all of these a day, or some takes more than these a day. It all depends on if they have more symptoms of the RSD, or less symptoms of the RSD....such as the spasms being worse or less, the swelling being mild or severe..... Like Fibro, With RSD, no one has the exact same symptoms, no one takes the exact same meds, no one has the exact same pains......We all handle it differently in our own ways. I hope I helped you out somehow! Tonia, Iowa ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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