Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Chad, I'd like to say that I don't think you necessarily have to have massive swelling in joints to feel pain. I have had both. I mean pain with or without swelling but yet arthritic damage with both. My hopes are that the pain center you go to will listen and give you the medications that will adequately address you pain issues and give you help. Best of luck, _____ My joints don't really get inflamed much at all, sometimes they get warm and I still get some rashes. But my pain has never really gone away. ____________________________________________________________ Love Graphic Design? Find a school near you. Click Now. http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vGi5Pv0mZrSGLHP3APGKbDNWrq\ rZZC6SfI26gskBzDNn40u/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 I just wanted to say thanks to everyone who helped me out with that question. I will be addressing it with my Dr on the next visit. He had told me that if this wasnt enough he would be starting me on Oxycontin or Methadone. Anyone have any input on the 2. Thanks Chad > > Chad, > > I'd like to say that I don't think you necessarily have to have massive > swelling in joints to feel pain. I have had both. I mean pain with or > without swelling but yet arthritic damage with both. My hopes are that the > pain center you go to will listen and give you the medications that will > adequately address you pain issues and give you help. > > Best of luck, > > > > _____ > > My joints don't really get inflamed much at all, sometimes they get warm and > > I still get some rashes. But my pain has never really gone away. > > ____________________________________________________________ > Love Graphic Design? Find a school near you. Click Now. > http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vGi5Pv0mZrSGLHP3APGKbDNWrq\ r ZZC6SfI26gskBzDNn40u/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 I just wanted to say thanks to everyone who helped me out with that question. I will be addressing it with my Dr on the next visit. He had told me that if this wasnt enough he would be starting me on Oxycontin or Methadone. Anyone have any input on the 2. Thanks Chad > > Chad, > > I'd like to say that I don't think you necessarily have to have massive > swelling in joints to feel pain. I have had both. I mean pain with or > without swelling but yet arthritic damage with both. My hopes are that the > pain center you go to will listen and give you the medications that will > adequately address you pain issues and give you help. > > Best of luck, > > > > _____ > > My joints don't really get inflamed much at all, sometimes they get warm and > > I still get some rashes. But my pain has never really gone away. > > ____________________________________________________________ > Love Graphic Design? Find a school near you. Click Now. > http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vGi5Pv0mZrSGLHP3APGKbDNWrq\ r ZZC6SfI26gskBzDNn40u/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 I just wanted to say thanks to everyone who helped me out with that question. I will be addressing it with my Dr on the next visit. He had told me that if this wasnt enough he would be starting me on Oxycontin or Methadone. Anyone have any input on the 2. Thanks Chad > > Chad, > > I'd like to say that I don't think you necessarily have to have massive > swelling in joints to feel pain. I have had both. I mean pain with or > without swelling but yet arthritic damage with both. My hopes are that the > pain center you go to will listen and give you the medications that will > adequately address you pain issues and give you help. > > Best of luck, > > > > _____ > > My joints don't really get inflamed much at all, sometimes they get warm and > > I still get some rashes. But my pain has never really gone away. > > ____________________________________________________________ > Love Graphic Design? Find a school near you. Click Now. > http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vGi5Pv0mZrSGLHP3APGKbDNWrq\ r ZZC6SfI26gskBzDNn40u/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Hi Chad, My name is and I've been pretty quiet in regards to the board lately (because I have been at Mayo earlier this month and it has taken me a long time to recover to a point to look at email). I can tell you that I have this pain. I have had it since 2001, it has just gotten worse since then, but I have stayed positive. I also have severe pain in my back now, that started about a year ago and I now know is due to stills arthritis, stenosis, spondylosis, and a couple of buldging discs in my lower back. I am not over weight at all. When all this started at first, I thought I was getting a bad flu. But then it happened every day and it was, at first my feet, knees, wrists and shoulders (along with muscles) and it would happen around noon, but after about 3 months, it was all the time. Some of my joints show a little swelling, some don't (like my ankles and knees). The doctor believes that my ankles and knees hurt because of Fibromyalgia as a secondary dx and stills as a primary dx. He believes I've had JRA(Stills) all my life based on my medical dx and that the flares have gotten worse as an adult and that the doctors didn't recognize it when I was a child. My back is degenerative arthirtis from stills. Feel free to ask any questions. I can tell you that the pain specialist I saw at Mayo recommended a pump for my back, but I don't know what to do in regards to the rest of my body in regards to quality of life if I go that way. If I try to go out for an hour for lunch or dinner with my husband, I can barely get through it - especially dinner. Lunch I can push through, but Dinner kills me. Most doctors believe that any opiod will cause problems in your central nervous system. I have found the using muscle relaxers with a small amount of pain med does help. Have you tried that yet? I hope you feel better and sorry that you are going through this. It's tough. Are you on Methotrexate with Enbrel also? Another drug that helps with pain (surprisingly) if you haven't tried it, is Cymbalta. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hello Chad and everyone else! I rekognize some stuff of you saying. But The pain for me comes like attacks that last for an hour or two. after the attaks the " spot " that had the attack is soar for days after the " attack " . Last week I got one in my left thumb. It felt like it was broken. And Im still a bit soar there. Yesterday it was my shoulders. And during the weekend it was my toes on the right foot. I will be admitted to a specialist hospital next week to start Kineret treatment and the Docs on the clinic is also attached to the nordic study on Stills that I have agreed to be a part of. I have done as someone managed write a diary with temps and how im feeling. I also write " new " symtoms up. And will bring this to the docs next week. Keep on fighting my friends! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hello Chad and everyone else! I rekognize some stuff of you saying. But The pain for me comes like attacks that last for an hour or two. after the attaks the " spot " that had the attack is soar for days after the " attack " . Last week I got one in my left thumb. It felt like it was broken. And Im still a bit soar there. Yesterday it was my shoulders. And during the weekend it was my toes on the right foot. I will be admitted to a specialist hospital next week to start Kineret treatment and the Docs on the clinic is also attached to the nordic study on Stills that I have agreed to be a part of. I have done as someone managed write a diary with temps and how im feeling. I also write " new " symtoms up. And will bring this to the docs next week. Keep on fighting my friends! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hello Chad and everyone else! I rekognize some stuff of you saying. But The pain for me comes like attacks that last for an hour or two. after the attaks the " spot " that had the attack is soar for days after the " attack " . Last week I got one in my left thumb. It felt like it was broken. And Im still a bit soar there. Yesterday it was my shoulders. And during the weekend it was my toes on the right foot. I will be admitted to a specialist hospital next week to start Kineret treatment and the Docs on the clinic is also attached to the nordic study on Stills that I have agreed to be a part of. I have done as someone managed write a diary with temps and how im feeling. I also write " new " symtoms up. And will bring this to the docs next week. Keep on fighting my friends! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 > > > Hi Chad The pain is so bad sometimes and often gets overlooked.I would never have believed what people say about pain before I expereinced it myself and like you i would end up in A & E (ER) almost begging for pain relief.To be fair my local hospital was good and would get me through that crisis but it took 4 long painful years before i got any joined up thinking.I saw an anasthetist who specialises in Pain Control- he got rid of all the opiates that i was taking which make me so woolly headed and put me on an anti epilepsy drug-Gabapentin in the Uk-For me it a good option- i dont feel woolly and out of it all the time and i use these synthetic morphine patches when the pain is bad.Its not perfect but SO much better than before so please dont give up hope- keep asking for help and some of the CBT techniques help too if you read self help books of that genre.Are we allowed to post names of books which have helped us as i found a couple of US books really helpful in knowing what was available Take care,Stillers Annie x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 > > > Hi Chad The pain is so bad sometimes and often gets overlooked.I would never have believed what people say about pain before I expereinced it myself and like you i would end up in A & E (ER) almost begging for pain relief.To be fair my local hospital was good and would get me through that crisis but it took 4 long painful years before i got any joined up thinking.I saw an anasthetist who specialises in Pain Control- he got rid of all the opiates that i was taking which make me so woolly headed and put me on an anti epilepsy drug-Gabapentin in the Uk-For me it a good option- i dont feel woolly and out of it all the time and i use these synthetic morphine patches when the pain is bad.Its not perfect but SO much better than before so please dont give up hope- keep asking for help and some of the CBT techniques help too if you read self help books of that genre.Are we allowed to post names of books which have helped us as i found a couple of US books really helpful in knowing what was available Take care,Stillers Annie x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Saw my Rheuno Monday and asked him about the two possibilities that you told me about and this was his response: Myofascial Pain Syndrome is the same as Fibromyalgia and we know you already have that and that I'm too young for Polymyalgia Rheumatica and that was that. Thought I'd let you know what he said, but I don't know how true all of this is. I have to be honest and say, I just don't have much faith in these doctor's, although I'm sure there are alot of good ones still left. Thanks for those suggestions. Stay in touch. Soft hugs & one step @ a time. H.From: memommy1947 <MEMOMMY1947@ aol.com>Subject: Re: Re: PAINTo: dominie@groups .comDate: Sunday, October 26, 2008, 1:04 PM It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8days> now, I've been bedridden with such severe pain that it just hurts> unbelievably everywhere. It hurts to straighten my arms, it hurtsto> bend my arms, as far as my elbows and then the inner portion, thesame> goes for my legs where it hurts if I straighten then if I bend,where> my knees hurt and then the backside of my knees. My shoulders aswell.> My fingers, wrists, back, neck, buttocks, etc. Along with this Ihave> major tingling mainly in my legs, but also in my fingers.>> The more severe pain is usually in the a.m. but it doesn't seem togo> away but eventually by the evening I'm well enough to go to theliving> room for a couple of hrs, but still the pain is severe.>> It seems that the longer I have FMS the worse it's getting. Isthis> normal? I've only been diagnosed with this within the past yearbut> believe that I've had this since the 80's, and I'm still trying the> find the "right" doctor to treat me so I'm not on the proper medsfor> sure. Since I'm in bed all day my family just doesn't understandand> I'm getting, "you're still in bed"? kinda thing, which hurts, but> there's nothing I can do.>> Thanks everyone for your help and input!> ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 The doc told me its the same thing. These docs r so confusing. Ok well he says I have it so if this is something different what do I do for this? I'm more confused then ever. ThanksSent from my BlackBerry® smartphone with SprintSpeedFrom: "memommy1947" <MEMOMMY1947@...>Date: Thu, 30 Oct 2008 00:59:56 -0500 (Eastern Standard Time)<dominie >Subject: Re: Re: PAIN When I came down with PMR, I had done the research, before going to the Dr. It usually hits above 50 with 70 being the mean age. So when I had the symptoms, I ruled it out because I was only 55. Well, 2 years later when I went to the rhuemy, he said yes I had it, and that some get it earlier than others. Myofasical Pain Syndrome is not fibromyalgia. Myofascia is the outer lining of the muscle, When you take the skin off of a chicken breast and you see that shiney layer, that is the myofascia. In MPS, that gets tight and thus causes pain, it needs to be stretched to relieve the pressure. My massage therapist showed me how to release mine after she got it released initially. It is a movement kind of like Rolfing. Get, Dr. Devin Starnyl's book, she describes MPS in it. You can have it without FMS or CFS Sandie -- Re: Re: PAINdominie@groups .comDate: Sunday, October 26, 2008, 1:04 PM It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8days> now, I've been bedridden with such severe pain that it just hurts> unbelievably everywhere. It hurts to straighten my arms, it hurtsto> bend my arms, as far as my elbows and then the inner portion, thesame> goes for my legs where it hurts if I straighten then if I bend,where> my knees hurt and then the backside of my knees. My shoulders aswell.> My fingers, wrists, back, neck, buttocks, etc. Along with this Ihave> major tingling mainly in my legs, but also in my fingers.>> The more severe pain is usually in the a.m. but it doesn't seem togo> away but eventually by the evening I'm well enough to go to theliving> room for a couple of hrs, but still the pain is severe.>> It seems that the longer I have FMS the worse it's getting. Isthis> normal? I've only been diagnosed with this within the past yearbut> believe that I've had this since the 80's, and I'm still trying the> find the "right" doctor to treat me so I'm not on the proper medsfor> sure. Since I'm in bed all day my family just doesn't understandand> I'm getting, "you're still in bed"? kinda thing, which hurts, but> there's nothing I can do.>> Thanks everyone for your help and input!> ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 When I came down with PMR, I had done the research, before going to the Dr. It usually hits above 50 with 70 being the mean age. So when I had the symptoms, I ruled it out because I was only 55. Well, 2 years later when I went to the rhuemy, he said yes I had it, and that some get it earlier than others. Myofasical Pain Syndrome is not fibromyalgia. Myofascia is the outer lining of the muscle, When you take the skin off of a chicken breast and you see that shiney layer, that is the myofascia. In MPS, that gets tight and thus causes pain, it needs to be stretched to relieve the pressure. My massage therapist showed me how to release mine after she got it released initially. It is a movement kind of like Rolfing. Get, Dr. Devin Starnyl's book, she describes MPS in it. You can have it without FMS or CFS Sandie -- Re: Re: PAINdominie@groups .comDate: Sunday, October 26, 2008, 1:04 PM It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8days> now, I've been bedridden with such severe pain that it just hurts> unbelievably everywhere. It hurts to straighten my arms, it hurtsto> bend my arms, as far as my elbows and then the inner portion, thesame> goes for my legs where it hurts if I straighten then if I bend,where> my knees hurt and then the backside of my knees. My shoulders aswell.> My fingers, wrists, back, neck, buttocks, etc. Along with this Ihave> major tingling mainly in my legs, but also in my fingers.>> The more severe pain is usually in the a.m. but it doesn't seem togo> away but eventually by the evening I'm well enough to go to theliving> room for a couple of hrs, but still the pain is severe.>> It seems that the longer I have FMS the worse it's getting. Isthis> normal? I've only been diagnosed with this within the past yearbut> believe that I've had this since the 80's, and I'm still trying the> find the "right" doctor to treat me so I'm not on the proper medsfor> sure. Since I'm in bed all day my family just doesn't understandand> I'm getting, "you're still in bed"? kinda thing, which hurts, but> there's nothing I can do.>> Thanks everyone for your help and input!> ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 My sports medicine Dr sent me to a massage therapist for release. Google Rolfing, you might be able to find a link that will show you how to do this, I can release my myofascia on my own now, since my therapist did the initial release and showed me how to do it myself. If you can't afford a massage therapist, see if you have a massage therapy school in your area and go there. Students work on you, but they have instructors handy to help supervise them. Sandie -- Re: Re: PAINdominie@groups .comDate: Sunday, October 26, 2008, 1:04 PM It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8days> now, I've been bedridden with such severe pain that it just hurts> unbelievably everywhere. It hurts to straighten my arms, it hurtsto> bend my arms, as far as my elbows and then the inner portion, thesame> goes for my legs where it hurts if I straighten then if I bend,where> my knees hurt and then the backside of my knees. My shoulders aswell.> My fingers, wrists, back, neck, buttocks, etc. Along with this Ihave> major tingling mainly in my legs, but also in my fingers.>> The more severe pain is usually in the a.m. but it doesn't seem togo> away but eventually by the evening I'm well enough to go to theliving> room for a couple of hrs, but still the pain is severe.>> It seems that the longer I have FMS the worse it's getting. Isthis> normal? I've only been diagnosed with this within the past yearbut> believe that I've had this since the 80's, and I'm still trying the> find the "right" doctor to treat me so I'm not on the proper medsfor> sure. Since I'm in bed all day my family just doesn't understandand> I'm getting, "you're still in bed"? kinda thing, which hurts, but> there's nothing I can do.>> Thanks everyone for your help and input!> ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Morning Annie: Yes, you're allowed to post names of books without a problem. You can also name other products if you wish, I don't believe we're censored when it comes to that. I have to tell you I chuckled a bit when I read you take Gabapentin. My Ricky takes that for his hip displacia along with tramadol for pain. By the way, Ricky is one of my dogs. He's a beautiful black lab mix and his sister, Lucy (of course) is a black lab mix as well but with more mix than lab. OK, I'm going to try bed again, possibly sleep (who knows). Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 > Thanks Ellen will post the details of some books which i found helpful then.M Hope the gaba works for the dog too! we have a spaniel.My in laws in South Africa are always very proud that their family doctor trained first as a avet because its harder to get into vet school than med school!i shall take your dogs medication as proof we are on right track xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 > Thanks Ellen will post the details of some books which i found helpful then.M Hope the gaba works for the dog too! we have a spaniel.My in laws in South Africa are always very proud that their family doctor trained first as a avet because its harder to get into vet school than med school!i shall take your dogs medication as proof we are on right track xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 > Thanks Ellen will post the details of some books which i found helpful then.M Hope the gaba works for the dog too! we have a spaniel.My in laws in South Africa are always very proud that their family doctor trained first as a avet because its harder to get into vet school than med school!i shall take your dogs medication as proof we are on right track xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Thanks, I'll look for the book. Is there a certain type of massage therapist I should look for? Since Myofascial Pain Syndrome is different and he says it's the same thing, then do I have it or not? Now I wonder. Thanks HFrom: memommy1947 <MEMOMMY1947@ aol.com>Subject: Re: Re: PAINdominie@groups .comDate: Sunday, October 26, 2008, 1:04 PM It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8days> now, I've been bedridden with such severe pain that it just hurts> unbelievably everywhere. It hurts to straighten my arms, it hurtsto> bend my arms, as far as my elbows and then the inner portion, thesame> goes for my legs where it hurts if I straighten then if I bend,where> my knees hurt and then the backside of my knees. My shoulders aswell.> My fingers, wrists, back, neck, buttocks, etc. Along with this Ihave> major tingling mainly in my legs, but also in my fingers.>> The more severe pain is usually in the a.m. but it doesn't seem togo> away but eventually by the evening I'm well enough to go to theliving> room for a couple of hrs, but still the pain is severe.>> It seems that the longer I have FMS the worse it's getting. Isthis> normal? I've only been diagnosed with this within the past yearbut> believe that I've had this since the 80's, and I'm still trying the> find the "right" doctor to treat me so I'm not on the proper medsfor> sure. Since I'm in bed all day my family just doesn't understandand> I'm getting, "you're still in bed"? kinda thing, which hurts, but> there's nothing I can do.>> Thanks everyone for your help and input!> ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 , as for a massage therapist, almost any should be able to do it. Here is a little something I learned as a nurse and working with Drs that thought they were God's gift to mankind. Don't say, "I think I have", I was reading on the Internet" If you suspect you have something, google it or go to webmd, and check on what the symptoms are etc. Then keep a journal of your symptoms, what you were doing, the weather etc. Paint the picture for them in black and white. Make sure you put in the journal what you did to try and get relief. The same holds true if you need pain medication. If you go in and ask for a specific pain med, a red flag is going to go up in the Docs mind, that you are only seeking drugs. This is because so many, people will Dr shop for pain meds and then sell them. Just read a bit ago about a 82 year old man who filed a police complaint that his meds were stolen, when upon investigation, it was proven that he traded them for sexual favors, he is now in jail under charges. People like that ruin it for those of us that legitimately need pain meds. I have found that if I do this, I am getting what I need for my care. I make a copy of my symptoms etc and take it to the Dr with me and tell I want it made a part of my chart then I date it for the day of my appt and make a copy for my records. Your journals, like this also will help in the fight for disability. Sandie -- Re: Re: PAINdominie@groups .comDate: Sunday, October 26, 2008, 1:04 PM It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8days> now, I've been bedridden with such severe pain that it just hurts> unbelievably everywhere. It hurts to straighten my arms, it hurtsto> bend my arms, as far as my elbows and then the inner portion, thesame> goes for my legs where it hurts if I straighten then if I bend,where> my knees hurt and then the backside of my knees. My shoulders aswell.> My fingers, wrists, back, neck, buttocks, etc. Along with this Ihave> major tingling mainly in my legs, but also in my fingers.>> The more severe pain is usually in the a.m. but it doesn't seem togo> away but eventually by the evening I'm well enough to go to theliving> room for a couple of hrs, but still the pain is severe.>> It seems that the longer I have FMS the worse it's getting. Isthis> normal? I've only been diagnosed with this within the past yearbut> believe that I've had this since the 80's, and I'm still trying the> find the "right" doctor to treat me so I'm not on the proper medsfor> sure. Since I'm in bed all day my family just doesn't understandand> I'm getting, "you're still in bed"? kinda thing, which hurts, but> there's nothing I can do.>> Thanks everyone for your help and input!> ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Hi , You are very blessed my friend to be pain free for that many days out of the week. Count your blessings . I know that it is still a very tough and hard trial for you and that it is never easy to go through the constant unknown. But oh, to not have pain is truly a miracle. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Hi , You are very blessed my friend to be pain free for that many days out of the week. Count your blessings . I know that it is still a very tough and hard trial for you and that it is never easy to go through the constant unknown. But oh, to not have pain is truly a miracle. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 OK, here is the skoop for me. Nothing,nothing I try. All the suggestions here, that I read over and over. Acupunture,massage,rubs,pain killers {have not tried narcotics......yet}, exercise {which you all know I faithfully do},heat,cool,baths...oh I could but won't go on helps this pain. I am in excrutiating pain tonight. If someone says "boo" to me I am going to cry. I feel like I am swimming in it or rather drowning it it. Nothing touches it. All the above things help in the moment with the regular horrible pain, getting me through the day {along with my DBT skills} but this, this is unbearable. I am losing hope that there is no solution to the pain. Only bandaides on huge gaping wounds. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Sue; You sounded like me last week don't touch me and even my hair hurt. I even took a Darvon from when i had my surgery last month that didn't even help. It even hurt to sit in a warm bath tub next day for warm water to hit my back.I know weather changes hurt us too.have you've over done it with your horses or playing with your pugs?? I wish for you less pain tomorrow. we all do understand too. So have a cup of hot ea if you drink hot tea and soak your feet too if you can. Remember the fibro massage oil for your feet too it was posted here but here it is sweetie 1 ounce carrier oil or almond oil 10 drops roman chaomile 5 drops lavendar Mix in dark mcontainer then rub on bottoms of your feet. Hope it helps. I have been there last week and slowly coming out of it. Hugs heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Sue, So sorry to hear that you are in so much pain. Have you tried a steaming hot bath with epsom salt? Put a towel under you in the tub, and put lots of epsom salt. I know it is old fashioned but for me hardly anything works as well, and sometimes the mixture of heat with the epsom salt will kill the pain enough for me to get to sleep and sleep some of the pain off. Also, I know it has been said a time or two, but you cannot be exercising. You have to limit the amount of physical activity because it brings on the pain. Take a break from it until you have come out of your flare. I know you said you tried baths but did you try the epsom salt? There is a solution to the pain and everyone has a different solution. If you have not tried narcotics, then maybe it is time you went to the er with your sympotms and asked for some relief. THere are times for me when it is the only option. I don't know if any of this helps, but I feel so bad for you. Some days I feel like I would feel better with a bullet in the head, but still I survive without that option. I do understand and I hope you come out of this soon. Stacie Quote Link to comment Share on other sites More sharing options...
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