17 Jan 2011, 2:02 pm
Taupey wrote:
clumsybee wrote:
I have both Asperger's and fibromyalgia (since I was 14), but I'm not sure there's a concrete link between the two. I'm the only person I've heard of who has both. Severe sensory issues and fibromyalgia could very well have a strong link, though.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people.
9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people. 9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
Thank you ClumsyBee, I have had Fibromyalgia for almost 10 years, I am very familiar with this list and don't need the lecture. My question was how medical professionals are treating BluePuppy's sister's Fibromyalgia over in England (pt and rx?) and not what I need to do in my life to improve Fibromyalgia.
Sorry about that. I didn't aim it towards you only Taupey, but to everyone.
Edited because I wrote a depressed reply and realized my info was sort of useful.
Last edited by clumsybee on 17 Jan 2011, 4:23 pm, edited 1 time in total.
17 Jan 2011, 2:32 pm
clumsybee wrote:
I have both Asperger's and fibromyalgia (since I was 14), but I'm not sure there's a concrete link between the two. I'm the only person I've heard of who has both. Severe sensory issues and fibromyalgia could very well have a strong link, though.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people.
9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people. 9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
Thank you for your post. I have AS, fibro, and CFS (plus depression and anxiety), so I can relate, especially to the part in bold. I don't often follow the suggested protocols because it feels so hopeless. I'm on a gluten free and dairy free diet and that seems to have helped some with the fatigue. I have also read that there have been excellent results in treating fibro with Tai Chi, but I haven't tried it myself because I am too tired to go out to a Tai Chi center -- ironically.
As to the isolation, I'm lucky enough to have a few friends, but being exhausted and in pain all the time, plus being awkward and uncomfortable around people has really done a number on my life. Lately I've been trying to schedule activities when I will at least be around people, but in the end I'm always too tired to go. I graduated from college, but I have no job, no career, very few friends, and lately, no boyfriend. He left me because I could never go anywhere with him and because the AS makes it uncomfortable for me to be touched. Basically, he left me because I am too sick.
17 Jan 2011, 4:09 pm
clumsybee wrote:
I have both Asperger's and fibromyalgia (since I was 14), but I'm not sure there's a concrete link between the two. I'm the only person I've heard of who has both. Severe sensory issues and fibromyalgia could very well have a strong link, though.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people.
9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people. 9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
Wow, where do I find more information like this??? I've been diagnosed for about a year now and so far all the doctors have done is push medications.
17 Jan 2011, 4:18 pm
bee33 wrote:
clumsybee wrote:
I have both Asperger's and fibromyalgia (since I was 14), but I'm not sure there's a concrete link between the two. I'm the only person I've heard of who has both. Severe sensory issues and fibromyalgia could very well have a strong link, though.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people.
9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people. 9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
Thank you for your post. I have AS, fibro, and CFS (plus depression and anxiety), so I can relate, especially to the part in bold. I don't often follow the suggested protocols because it feels so hopeless. I'm on a gluten free and dairy free diet and that seems to have helped some with the fatigue. I have also read that there have been excellent results in treating fibro with Tai Chi, but I haven't tried it myself because I am too tired to go out to a Tai Chi center -- ironically.
As to the isolation, I'm lucky enough to have a few friends, but being exhausted and in pain all the time, plus being awkward and uncomfortable around people has really done a number on my life. Lately I've been trying to schedule activities when I will at least be around people, but in the end I'm always too tired to go. I graduated from college, but I have no job, no career, very few friends, and lately, no boyfriend. He left me because I could never go anywhere with him and because the AS makes it uncomfortable for me to be touched. Basically, he left me because I am too sick.
Hmm... I was hoping that people would be more accepting of a person's illness as they got older. I thought people treated me rotten at 18, but it sounds like people your age aren't much better.
My doctor mentioned the Tai-Chi too ... but I live in the middle of nowhere, so there's not a center nearby.
I don't know if you've heard of this site before, but it's called MDJunction. It's a support group site for people with physical or mental health issues. There are a lot of middle aged women in the Fibromyalgia Group and they are accepting of everyone. Not too many people my age, though; it's mostly older (30+) people all around. If you want to give it a shot, here's the address : http://www.mdjunction.com
PS: If anyone's curious, my username for the site is Seventeen. I'm on there a lot more than I'm on here.
Taupey
Veteran
Joined: 24 Feb 2010
Age: 63
Gender: Female
Posts: 7,168
Location: Somewhere between juvenile and senile.
17 Jan 2011, 4:42 pm
clumsybee wrote:
Taupey wrote:
clumsybee wrote:
I have both Asperger's and fibromyalgia (since I was 14), but I'm not sure there's a concrete link between the two. I'm the only person I've heard of who has both. Severe sensory issues and fibromyalgia could very well have a strong link, though.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people.
9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people. 9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
Thank you ClumsyBee, I have had Fibromyalgia for almost 10 years, I am very familiar with this list and don't need the lecture. My question was how medical professionals are treating BluePuppy's sister's Fibromyalgia over in England (pt and rx?) and not what I need to do in my life to improve Fibromyalgia.
Sorry about that. I didn't aim it towards you only Taupey, but to everyone.
Edited because I wrote a depressed reply and realized my info was sort of useful.
No problem CB, the information in your comment is extremely useful for people who are just learning about Fibromyalgia. You wrote it to me and I wanted to tell you I already knew about all of this.
Last edited by Taupey on 17 Jan 2011, 4:47 pm, edited 1 time in total.
17 Jan 2011, 4:42 pm
Teebst wrote:
clumsybee wrote:
I have both Asperger's and fibromyalgia (since I was 14), but I'm not sure there's a concrete link between the two. I'm the only person I've heard of who has both. Severe sensory issues and fibromyalgia could very well have a strong link, though.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people.
9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
There's not any cure for fibromyalgia. You can make the condition a little bit better by making some lifestyle changes, but the best you can hope for is a reduction in symptoms. Often, fibro has some side effect conditions that come along with it, like Irritable Bowel Syndrome or GERD. You have to make sure to treat all the conditions fibro brings on you.
Taupey, to improve fibro, you need to ...
1) Reduce the stress in your life. Easier than it sounds, I know, but being stressed will always worsen the pain from fibro.
2) Eat a cleaner diet. Don't eat anything with MSG or Aspartame or other man-made food. Most of these things flare fibro. Testing for food allergies and eliminating any foods you're even mildly allergic to can help as well.
3) Get at least 7 hours of sleep each night. Again, not easy, but your body needs time to recover from the chronic fibro pain. If you sleep that long and still don't feel refreshed waking up, schedule an appointment to have your sleep monitored one night to make sure you don't have sleep apnea or something interfering with your quality of sleep.
4) You must GENTLY exercise with fibro. No running any marathons or things like that, because that will earn you three straight days in bed. Just 15 minutes each day walking will do the trick. If you have nowhere to walk, yoga will also do. Swimming by far is the best fibro exercise though, since it doesn't put stress on your joints or muscles and provides resistance to strengthen muscles. But a pool isn't always an accessible place for most people. Whatever you do, don't stay in bed all day. I was at my worst when I was bedridden and could barely walk.
5) Get a doctor who believes you when you're in pain. I've dealt with a few doctors who preferred to call me hysterical and a hypochondriac instead of trying to help get rid of the fibro pain. If you have one of these doctors treating you, look for another.
6) Move to a warmer climate. The cold weather makes things worse. Currently it's -1 degrees Fahrenheit where I am, and let me tell you ... temperatures that cold make fibro absolutely miserable!
7) Don't expect to be able to do everything what you were able to in the past. You'll only be able to do so if you go into remission, which most people don't do. And going back to that level of work could bring the fibro back with a vengeance! So, lower your expectations of yourself and just do whatever your body feels it's capable of that day. There will be good days and bad days; don't beat yourself up on the bad days, or you'll just feel worse.
They say socialization and having friends is essential for fibro sufferers, but ... I've never had any friends. And fibromyalgia makes it really freaking difficult to keep friends on its own. Add that to my Asperger's awkwardness and it's easy to see why I've never had any friends. Admittedly, I'm only 18 and people my age just want to 'have fun', but a lot of older NT people have trouble keeping friends too. Most people don't want to associate with ill people, and it can be very isolating. And if you miss more than one event because of not feeling well, it's likely you'll become forgotten by most friends and family too. That 's what happened with my family forgetting about me. If you know someone with fibro, please offer your support. They probably don't get it from most people. 9) Medications are really a trial and error game. Most medications meant to help fibro are antidepressants, and the ones that aren't can have really nasty side effects. Doctors will want to put you on medications for the first line of defense, but please try the lifestyle changes first before getting drugged up. There's no guarantee if the medication will help you, and a lot of the ones I was on made me worse. One of them, Provigil, I had nasty withdrawal symptoms for a week from, and another, Trazodone, made me almost commit suicide. You probably will have to be on some medication to help the fibro, but be wary of the side effects or if you feel addicted to the medication. Savella made my heart rate be 130 beats a minute at rest, which was dangerously high. Cymbalta made me even more depressed and gain weight. Lyrica made it so I couldn't poop for two weeks and really nauseous. I've been most
10) Have one big blood test to rule out other conditions. Test for all rheumatological conditions (Lyme Disease, Rheumatoid Arthritis, etc). Test your thyroid if you're gaining weight for no reason with the fibro. Test for food allergies. Test for Vitamin D. Test your inflammation levels. Test for Celiac's disease. Test your lipids and blood sugar levels (have to fast 12 hours if you test lipids, just so you know.) Test for anemia. Basically, test everything you can.
I hope I don't post this and have nobody read it. That would suck. This is by far the longest post I've put up on this site. If anyone has anymore questions re: fibro, feel free to PM. I'm unfortunately an expert in this field.
Wow, where do I find more information like this??? I've been diagnosed for about a year now and so far all the doctors have done is push medications.
I'm guessing that the doctors you see have some connection to one of the pharmaceutical companies. A lot of doctors do, and their first line of defense is to prescribe medications. By prescribing medications, the pharmaceutical companies provide them with free stuff with their logo on it. If you see a tissue box with a medication logo on the side, that's how you know. My osteopath told me all about this phenomenon one day. You don't want a pharmaceutical doctor treating your fibro. My primary used to be a doctor like this, and I didn't get any better. 'If a medicine didn't work, you just take more of it!' That was his catchphrase ... if you can, I'd try a different doctor.
I didn't mention this before, but if you have fibro and there are any osteopaths in your area that are covered under insurance, I'd beg to get an appointment with one of them NOW. The only reason I'm not bedridden at this point is because my osteopath's accountant and my mom are bowling buddies and she got me an appointment. Stupid luck, basically. Now I see him weekly and he helps with the pain and tightness a lot.
Granted, the osteopath I have is a cream of the crop type of guy, but all osteopathic doctors should be able to loosen the tight spots like mine does.
The website I mentioned earlier could also be of some help to you as well, Teebst.
17 Jan 2011, 9:05 pm
18 Jan 2011, 11:36 am
19 Jan 2011, 7:43 am
Taupey
Veteran
Joined: 24 Feb 2010
Age: 63
Gender: Female
Posts: 7,168
Location: Somewhere between juvenile and senile.
19 Jan 2011, 9:03 am
19 Jan 2011, 4:32 pm
Ravenclawgurl
Veteran
Joined: 19 Jun 2007
Age: 35
Gender: Female
Posts: 1,274
Location: somewhere over the rainbow
20 Jan 2011, 3:24 pm
Ravenclawgurl
Veteran
Joined: 19 Jun 2007
Age: 35
Gender: Female
Posts: 1,274
Location: somewhere over the rainbow
10 Feb 2011, 12:43 am
10 Feb 2011, 2:03 am
30 Mar 2011, 6:33 pm
30 Mar 2011, 7:46 pm
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