Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 I SEE A PAIN CLINIC CONVERSATION GOING ON. I TOO HAVE A QUESTION AND IT COULD BE THE SAME QUESTION. I AM GOING NEXT WEEK FOR THE FIRST TIME, AND ITS NOT REALLY THE PAIN MEDS THAT I AM AFTER, BUT THE REASON FOR MY PAIN. I HAVE NOT REALLY FIGURED OUT WHY WE HAVE PAIN WITH SARC & NEURO SARC, BUT I DO UNDERSTAND THE FIBRO THING. I ALSO HAVE A LOT OF PAIN WITH JUST SNEEZING IN MY LEFT LOWER LUNG. Lynne, so many times the pain of sarcoidosis is the inflammation caused by the granulomas. If we have granulomas in our blood stream (the blood cells show it as ACE levels) then it's called "vasculitis." This means inflammation of the blood vessels. If the inflammation is in the joints, ligaments, muscles--then most of us have been told we have "fibromyalgia." Myalgia means muscle pain. Fibro means muscle fibers or ligaments. This comes on as the pain in your muscles. Many times when they do the "muscle biopsies" they find that those wonderful "trigger points" are actually sarcoidosis granulomas. Think of it like having a knot in a spot on your shoulder. No amount of massaging or manipulation gets rid of the knot. That is because we've developed scar tissue in this spot-- and it hardens, makes the muscle fiber hard so that it doesn't "give" when it needs to move, so we end up with a tear in the muscles around it, which then needs repair, so our body sends the white cells to "heal" that spot, next come the blood cells that clean out the white cells (these are the TNF-a and TNF-b cells) and because our immune system doesn't get the signal to stop producing these cells- we end up with a build-up of cells and proteins- which harden, and the problem gets worse. If this is happening to our nerve ends-- say the fingers, hands, toes, feet-- then we develop "neuropathy". With nerve ends, (the nerves are covered by a protective sheath) the sheath begins to deteriorate- and we end up with a "shorting" out of the signals to our fingers. It is the feeling of tingling, burning, electrical shots, lack of sensation, numbness, etc. This is very similar to what MS does-- the difference being that with MS, the "demylination" of the nerve sheath happens at the base of the spine and works upward, with NS- it starts with the ends of the nerves and goes back towards the spine. (This is why MD's lean towards MS rather than NS.) It is also why I tell people that my NS is like having MS, peripheral neuropathy, Rheumatoid Arthritis and Dementia all wrapped in one. (That really explained it too SSDI's people- because they already have the protocols for disability determination for those). I know it made the difference in my getting my SSDI on the 1st request. Now, if it's the inside of your bones that hurt-- it generally means that you either have granulomas in the bone marrow, or on the bone itself. It can also be a sign that your body is having to use all the available calcium for other functions, so it's being leached from your bones. (I've found that if I take a calcium/magnesium tablet when the inside of my bones hurt--the pain goes away very, very quickly.) Also, the MSM that I talk about, is a natural mineral that should be in our foods, but we've engineered it out, and it is necessary to control pain throughout our body. Back to the bone pain. If the bone that has the "bone spur" or "granuloma" build up on it, and it's in the spot on your spine where the nerve goes out to the body, then any movement or pressure against that nerve is going to send all kinds of pain signals to the place that nerve control.s If the bone spur is on your wrist bones, then the pressure against the nerves- or if it's on a bone that sits on the discs, then you can get a bone on bone grating type pain. Lets say your holding a chicken bone, if there is a problem with the bone and it's no longer smooth, then any movement will put pressure on the cartlidge, and it's going to iritate that spot. Since sarcoidosis loves wrists, hands, feet and ankles-- we end up with alot of pain in those areas. It's brutal, and it isn't in your head. Since all our body joints and cartlidge require fluid (synovial fluid) to stay lubricated-- and the only way we get this fluid is by rehydrating, (drinking alot of water) it only makes sense that if you are not drinking enough, or are drinking sodas, sparkling water, or caffeine drinks- all which are actual "dehydrators"-- then your body can't keep the fluid levels correct for your muscles and discs, and your pain increases. If the pain is in your liver, gallbladder, lungs-- it is probably from the scarring or "fibrosis" of these organs. I explain that our lungs should look and feel like a new sponge. With sarcoidosis, the cells that would be the sponge cells, become old, hardened, split up,== just like that kitchen sponge that needs to be tossed out. Lynne, I hope this makes sense. My thinking isn't as clear as it should be right now. But this is the "basics of pain." For me, pain control means that I'm having to become aware that if my blood sugar (high or low sugars will cause nerve pain)-- so refined sugars have had to go. The smallest amount of dehydration seems to really send my spine into pain--as the discs themself become dehydrated (this does show on xrays) and then there is the added pressure on these discs. My vertebrae have numerous "spurs" which press against the nerve roots as they go out to my extremities, and needless to say- it's an attention getter. Also, dairy products produce Lactic Acid. This acid is what causes the muscle pain and inflammation that we feel when we exercise. Our body needs to send this acid out to the muscles, but we don't clear it as we should. I've found that a Tums or Rolaids before I get on the treadmill can make a huge difference. (This was a tip one of the MD's I worked for shared with us. He found that by taking Tums before he went running stopped the muscle pain.--hmm, cheap fix!) Food allergies, RED MEAT, all can cause a tremendous amount of pain. With red meat, it takes 2-3 days to digest, and all this time it's hanging around in your intestines-- and it's slowing the process of the ridding the toxins out of your body. This toxic build-up is also pain producing. As far as what to talk to the MD about. Tell him what's going on. If you have copies that explain proven sarcoidosis- take those records. If you have copies of CT's, MRI's or the reports-- take those. They need more than our "word" to prove to them that we have pain. Most should know that sarcoidosis produces "sarcoid induced arthritis" throughout your body. Tell it like it is. Dont play down the pain, and don't overplay it. Much of pain control is getting a good nights sleep, so they may give you a sleeping pill. It also requires that the seratonin and norephineprin (sp) levels be correct. These are hormones that control pain and pain sensation. So they may need to give you an "anti-depressant" to help with pain control. They should work you into a exercise program that may consist of starting with no weight arm exercises. (Reps of not more than 2 or 3 of a movement and working up) They may tell you if all else fails, sit in your chair and "march" in place. (Again, 2-3 reps to start with). If you have nerve pain-- there are a few meds that help. Cymbalta is getting good reviews. Neurontin is so, so. There are a few others, but I'm not recalling them right now. They should help you with "Guided Imagery", Guided Relaxation , Biofeedback, Counselling to help with the issues of loss, Exercise Therapy to get you to get your body moving at least a bit. With the diet changes, and the Guided Relaxation and Biofeedback, along with massage, Pulmonary rehab exercise, and chiropractic-- I'm fortunate enough to go without pain meds so far. The anti-inflammatories, the immune supressants that are blocking the TNF-a and b production, the muscle relaxent - are working for me. I hope you find some answers, Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 I don't have an answer to " WHY PAIN! " ,but I do know I am now at a point that I have to use everything available and it still is no where near enough. I have Tens units, Muscle Stim., BioFeedback is great, if you can afford to learn how to use t. I have that game, but I'm having a hard time trying to learn how to use it. I would never make it without meditation, but I find it's getting more and more difficult to meditate! I go to a Pain clinic and They sure don't " just hand out my pain Meds without careful evauation everytime and I'm glad they check as close as They do. I see my Shrink and Boy do I ever need him! I would have never made it this far without him! I wish all my docs had his compassion! Everybody feels pain a little/lot different! Please don't try to be some kind of martyr because someone says that Opid Meds are " BAD " for you. I can't stand any of my Meds, but I could never make it through the day without them. I never thought I would be taking morphine and other hard line pain meds to fight pain every minute of every Day! I don't know what ones are worse, my OPOIDS, The Prednisone, Methothrexate, etc..... Now I get to try a new treaatment of IVIg and that scares me right now because it took so much research to find out anything about it. ( The cost is about $15,000 for one weeks treatment! I don't know how many I need and how long I'll have approval, but I sure can't afford it on my own! I hear that the symptoms will probably come back if I stop the treatment! I think I would really go nuts if my pain was gone for awhile, only to come back again when I could no longer get the treatment! I say check everything out as much as you can. Then use everything available to help you make it through another day. I hope I find out what the purpose of all this suffering is before I die! I can't go on anymore tonight , it's just too much too much tonight! Good Luck to all who have to fight this thing. I wish you my best and If I make it through next week with any kind of success, I'll let you know some details. E, themadmystyk > > In a message dated 7/20/06 5:21:47 AM Pacific Daylight Time, > children8_2000@... writes: > > > > I SEE A PAIN CLINIC CONVERSATION GOING ON. I TOO HAVE A QUESTION AND IT > > COULD BE THE SAME QUESTION. I AM GOING NEXT WEEK FOR THE FIRST TIME, AND ITS NOT > > REALLY THE PAIN MEDS THAT I AM AFTER, BUT THE REASON FOR MY PAIN. I HAVE NOT > > REALLY FIGURED OUT WHY WE HAVE PAIN WITH SARC & NEURO SARC, BUT I DO > > UNDERSTAND THE FIBRO THING. I ALSO HAVE A LOT OF PAIN WITH JUST SNEEZING IN MY LEFT > > LOWER LUNG. > > Lynne, > so many times the pain of sarcoidosis is the inflammation caused by the > granulomas. If we have granulomas in our blood stream (the blood cells show it as > ACE levels) then it's called " vasculitis. " This means inflammation of the > blood vessels. > If the inflammation is in the joints, ligaments, muscles--then most of us > have been told we have " fibromyalgia. " Myalgia means muscle pain. Fibro means > muscle fibers or ligaments. This comes on as the pain in your muscles. Many > times when they do the " muscle biopsies " they find that those wonderful > " trigger points " are actually sarcoidosis granulomas. Think of it like having a knot > in a spot on your shoulder. No amount of massaging or manipulation gets rid > of the knot. That is because we've developed scar tissue in this spot-- and > it hardens, makes the muscle fiber hard so that it doesn't " give " when it needs > to move, so we end up with a tear in the muscles around it, which then needs > repair, so our body sends the white cells to " heal " that spot, next come the > blood cells that clean out the white cells (these are the TNF-a and TNF-b > cells) and because our immune system doesn't get the signal to stop producing these > cells- we end up with a build-up of cells and proteins- which harden, and the > problem gets worse. > If this is happening to our nerve ends-- say the fingers, hands, toes, feet-- > then we develop " neuropathy " . With nerve ends, (the nerves are covered by a > protective sheath) the sheath begins to deteriorate- and we end up with a > " shorting " out of the signals to our fingers. It is the feeling of tingling, > burning, electrical shots, lack of sensation, numbness, etc. This is very similar > to what MS does-- the difference being that with MS, the " demylination " of > the nerve sheath happens at the base of the spine and works upward, with NS- it > starts with the ends of the nerves and goes back towards the spine. (This is > why MD's lean towards MS rather than NS.) It is also why I tell people that > my NS is like having MS, peripheral neuropathy, Rheumatoid Arthritis and > Dementia all wrapped in one. (That really explained it too SSDI's people- because > they already have the protocols for disability determination for those). I > know it made the difference in my getting my SSDI on the 1st request. > Now, if it's the inside of your bones that hurt-- it generally means that you > either have granulomas in the bone marrow, or on the bone itself. It can > also be a sign that your body is having to use all the available calcium for > other functions, so it's being leached from your bones. (I've found that if I > take a calcium/magnesium tablet when the inside of my bones hurt-- the pain goes > away very, very quickly.) Also, the MSM that I talk about, is a natural > mineral that should be in our foods, but we've engineered it out, and it is > necessary to control pain throughout our body. > Back to the bone pain. > If the bone that has the " bone spur " or " granuloma " build up on it, and it's > in the spot on your spine where the nerve goes out to the body, then any > movement or pressure against that nerve is going to send all kinds of pain signals > to the place that nerve control.s > If the bone spur is on your wrist bones, then the pressure against the > nerves- or if it's on a bone that sits on the discs, then you can get a bone on bone > grating type pain. > Lets say your holding a chicken bone, if there is a problem with the bone and > it's no longer smooth, then any movement will put pressure on the cartlidge, > and it's going to iritate that spot. Since sarcoidosis loves wrists, hands, > feet and ankles-- we end up with alot of pain in those areas. > It's brutal, and it isn't in your head. Since all our body joints and > cartlidge require fluid (synovial fluid) to stay lubricated-- and the only way we > get this fluid is by rehydrating, (drinking alot of water) it only makes sense > that if you are not drinking enough, or are drinking sodas, sparkling water, or > caffeine drinks- all which are actual " dehydrators " -- then your body can't > keep the fluid levels correct for your muscles and discs, and your pain > increases. > If the pain is in your liver, gallbladder, lungs-- it is probably from the > scarring or " fibrosis " of these organs. > I explain that our lungs should look and feel like a new sponge. With > sarcoidosis, the cells that would be the sponge cells, become old, hardened, split > up,== just like that kitchen sponge that needs to be tossed out. > Lynne, I hope this makes sense. My thinking isn't as clear as it should be > right now. But this is the " basics of pain. " > > For me, pain control means that I'm having to become aware that if my blood > sugar (high or low sugars will cause nerve pain)-- so refined sugars have had > to go. > The smallest amount of dehydration seems to really send my spine into > pain--as the discs themself become dehydrated (this does show on xrays) and then > there is the added pressure on these discs. My vertebrae have numerous " spurs " > which press against the nerve roots as they go out to my extremities, and > needless to say- it's an attention getter. > Also, dairy products produce Lactic Acid. This acid is what causes the > muscle pain and inflammation that we feel when we exercise. Our body needs to send > this acid out to the muscles, but we don't clear it as we should. I've found > that a Tums or Rolaids before I get on the treadmill can make a huge > difference. (This was a tip one of the MD's I worked for shared with us. He found > that by taking Tums before he went running stopped the muscle pain.- -hmm, cheap > fix!) > Food allergies, RED MEAT, all can cause a tremendous amount of pain. With > red meat, it takes 2-3 days to digest, and all this time it's hanging around in > your intestines-- and it's slowing the process of the ridding the toxins out > of your body. This toxic build-up is also pain producing. > > As far as what to talk to the MD about. Tell him what's going on. If you > have copies that explain proven sarcoidosis- take those records. If you have > copies of CT's, MRI's or the reports-- take those. > They need more than our " word " to prove to them that we have pain. Most > should know that sarcoidosis produces " sarcoid induced arthritis " throughout your > body. > Tell it like it is. Dont play down the pain, and don't overplay it. > Much of pain control is getting a good nights sleep, so they may give you a > sleeping pill. It also requires that the seratonin and norephineprin (sp) > levels be correct. These are hormones that control pain and pain sensation. So > they may need to give you an " anti-depressant " to help with pain control. > They should work you into a exercise program that may consist of starting > with no weight arm exercises. (Reps of not more than 2 or 3 of a movement and > working up) They may tell you if all else fails, sit in your chair and " march " > in place. (Again, 2-3 reps to start with). > If you have nerve pain-- there are a few meds that help. Cymbalta is getting > good reviews. Neurontin is so, so. There are a few others, but I'm not > recalling them right now. > They should help you with " Guided Imagery " , Guided Relaxation , Biofeedback, > Counselling to help with the issues of loss, Exercise Therapy to get you to > get your body moving at least a bit. > > With the diet changes, and the Guided Relaxation and Biofeedback, along with > massage, Pulmonary rehab exercise, and chiropractic-- I'm fortunate enough to > go without pain meds so far. The anti-inflammatories, the immune supressants > that are blocking the TNF-a and b production, the muscle relaxent - are > working for me. > I hope you find some answers, > > Blessings, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 I don't have an answer to " WHY PAIN! " ,but I do know I am now at a point that I have to use everything available and it still is no where near enough. I have Tens units, Muscle Stim., BioFeedback is great, if you can afford to learn how to use t. I have that game, but I'm having a hard time trying to learn how to use it. I would never make it without meditation, but I find it's getting more and more difficult to meditate! I go to a Pain clinic and They sure don't " just hand out my pain Meds without careful evauation everytime and I'm glad they check as close as They do. I see my Shrink and Boy do I ever need him! I would have never made it this far without him! I wish all my docs had his compassion! Everybody feels pain a little/lot different! Please don't try to be some kind of martyr because someone says that Opid Meds are " BAD " for you. I can't stand any of my Meds, but I could never make it through the day without them. I never thought I would be taking morphine and other hard line pain meds to fight pain every minute of every Day! I don't know what ones are worse, my OPOIDS, The Prednisone, Methothrexate, etc..... Now I get to try a new treaatment of IVIg and that scares me right now because it took so much research to find out anything about it. ( The cost is about $15,000 for one weeks treatment! I don't know how many I need and how long I'll have approval, but I sure can't afford it on my own! I hear that the symptoms will probably come back if I stop the treatment! I think I would really go nuts if my pain was gone for awhile, only to come back again when I could no longer get the treatment! I say check everything out as much as you can. Then use everything available to help you make it through another day. I hope I find out what the purpose of all this suffering is before I die! I can't go on anymore tonight , it's just too much too much tonight! Good Luck to all who have to fight this thing. I wish you my best and If I make it through next week with any kind of success, I'll let you know some details. E, themadmystyk > > In a message dated 7/20/06 5:21:47 AM Pacific Daylight Time, > children8_2000@... writes: > > > > I SEE A PAIN CLINIC CONVERSATION GOING ON. I TOO HAVE A QUESTION AND IT > > COULD BE THE SAME QUESTION. I AM GOING NEXT WEEK FOR THE FIRST TIME, AND ITS NOT > > REALLY THE PAIN MEDS THAT I AM AFTER, BUT THE REASON FOR MY PAIN. I HAVE NOT > > REALLY FIGURED OUT WHY WE HAVE PAIN WITH SARC & NEURO SARC, BUT I DO > > UNDERSTAND THE FIBRO THING. I ALSO HAVE A LOT OF PAIN WITH JUST SNEEZING IN MY LEFT > > LOWER LUNG. > > Lynne, > so many times the pain of sarcoidosis is the inflammation caused by the > granulomas. If we have granulomas in our blood stream (the blood cells show it as > ACE levels) then it's called " vasculitis. " This means inflammation of the > blood vessels. > If the inflammation is in the joints, ligaments, muscles--then most of us > have been told we have " fibromyalgia. " Myalgia means muscle pain. Fibro means > muscle fibers or ligaments. This comes on as the pain in your muscles. Many > times when they do the " muscle biopsies " they find that those wonderful > " trigger points " are actually sarcoidosis granulomas. Think of it like having a knot > in a spot on your shoulder. No amount of massaging or manipulation gets rid > of the knot. That is because we've developed scar tissue in this spot-- and > it hardens, makes the muscle fiber hard so that it doesn't " give " when it needs > to move, so we end up with a tear in the muscles around it, which then needs > repair, so our body sends the white cells to " heal " that spot, next come the > blood cells that clean out the white cells (these are the TNF-a and TNF-b > cells) and because our immune system doesn't get the signal to stop producing these > cells- we end up with a build-up of cells and proteins- which harden, and the > problem gets worse. > If this is happening to our nerve ends-- say the fingers, hands, toes, feet-- > then we develop " neuropathy " . With nerve ends, (the nerves are covered by a > protective sheath) the sheath begins to deteriorate- and we end up with a > " shorting " out of the signals to our fingers. It is the feeling of tingling, > burning, electrical shots, lack of sensation, numbness, etc. This is very similar > to what MS does-- the difference being that with MS, the " demylination " of > the nerve sheath happens at the base of the spine and works upward, with NS- it > starts with the ends of the nerves and goes back towards the spine. (This is > why MD's lean towards MS rather than NS.) It is also why I tell people that > my NS is like having MS, peripheral neuropathy, Rheumatoid Arthritis and > Dementia all wrapped in one. (That really explained it too SSDI's people- because > they already have the protocols for disability determination for those). I > know it made the difference in my getting my SSDI on the 1st request. > Now, if it's the inside of your bones that hurt-- it generally means that you > either have granulomas in the bone marrow, or on the bone itself. It can > also be a sign that your body is having to use all the available calcium for > other functions, so it's being leached from your bones. (I've found that if I > take a calcium/magnesium tablet when the inside of my bones hurt-- the pain goes > away very, very quickly.) Also, the MSM that I talk about, is a natural > mineral that should be in our foods, but we've engineered it out, and it is > necessary to control pain throughout our body. > Back to the bone pain. > If the bone that has the " bone spur " or " granuloma " build up on it, and it's > in the spot on your spine where the nerve goes out to the body, then any > movement or pressure against that nerve is going to send all kinds of pain signals > to the place that nerve control.s > If the bone spur is on your wrist bones, then the pressure against the > nerves- or if it's on a bone that sits on the discs, then you can get a bone on bone > grating type pain. > Lets say your holding a chicken bone, if there is a problem with the bone and > it's no longer smooth, then any movement will put pressure on the cartlidge, > and it's going to iritate that spot. Since sarcoidosis loves wrists, hands, > feet and ankles-- we end up with alot of pain in those areas. > It's brutal, and it isn't in your head. Since all our body joints and > cartlidge require fluid (synovial fluid) to stay lubricated-- and the only way we > get this fluid is by rehydrating, (drinking alot of water) it only makes sense > that if you are not drinking enough, or are drinking sodas, sparkling water, or > caffeine drinks- all which are actual " dehydrators " -- then your body can't > keep the fluid levels correct for your muscles and discs, and your pain > increases. > If the pain is in your liver, gallbladder, lungs-- it is probably from the > scarring or " fibrosis " of these organs. > I explain that our lungs should look and feel like a new sponge. With > sarcoidosis, the cells that would be the sponge cells, become old, hardened, split > up,== just like that kitchen sponge that needs to be tossed out. > Lynne, I hope this makes sense. My thinking isn't as clear as it should be > right now. But this is the " basics of pain. " > > For me, pain control means that I'm having to become aware that if my blood > sugar (high or low sugars will cause nerve pain)-- so refined sugars have had > to go. > The smallest amount of dehydration seems to really send my spine into > pain--as the discs themself become dehydrated (this does show on xrays) and then > there is the added pressure on these discs. My vertebrae have numerous " spurs " > which press against the nerve roots as they go out to my extremities, and > needless to say- it's an attention getter. > Also, dairy products produce Lactic Acid. This acid is what causes the > muscle pain and inflammation that we feel when we exercise. Our body needs to send > this acid out to the muscles, but we don't clear it as we should. I've found > that a Tums or Rolaids before I get on the treadmill can make a huge > difference. (This was a tip one of the MD's I worked for shared with us. He found > that by taking Tums before he went running stopped the muscle pain.- -hmm, cheap > fix!) > Food allergies, RED MEAT, all can cause a tremendous amount of pain. With > red meat, it takes 2-3 days to digest, and all this time it's hanging around in > your intestines-- and it's slowing the process of the ridding the toxins out > of your body. This toxic build-up is also pain producing. > > As far as what to talk to the MD about. Tell him what's going on. If you > have copies that explain proven sarcoidosis- take those records. If you have > copies of CT's, MRI's or the reports-- take those. > They need more than our " word " to prove to them that we have pain. Most > should know that sarcoidosis produces " sarcoid induced arthritis " throughout your > body. > Tell it like it is. Dont play down the pain, and don't overplay it. > Much of pain control is getting a good nights sleep, so they may give you a > sleeping pill. It also requires that the seratonin and norephineprin (sp) > levels be correct. These are hormones that control pain and pain sensation. So > they may need to give you an " anti-depressant " to help with pain control. > They should work you into a exercise program that may consist of starting > with no weight arm exercises. (Reps of not more than 2 or 3 of a movement and > working up) They may tell you if all else fails, sit in your chair and " march " > in place. (Again, 2-3 reps to start with). > If you have nerve pain-- there are a few meds that help. Cymbalta is getting > good reviews. Neurontin is so, so. There are a few others, but I'm not > recalling them right now. > They should help you with " Guided Imagery " , Guided Relaxation , Biofeedback, > Counselling to help with the issues of loss, Exercise Therapy to get you to > get your body moving at least a bit. > > With the diet changes, and the Guided Relaxation and Biofeedback, along with > massage, Pulmonary rehab exercise, and chiropractic-- I'm fortunate enough to > go without pain meds so far. The anti-inflammatories, the immune supressants > that are blocking the TNF-a and b production, the muscle relaxent - are > working for me. > I hope you find some answers, > > Blessings, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 I don't have an answer to " WHY PAIN! " ,but I do know I am now at a point that I have to use everything available and it still is no where near enough. I have Tens units, Muscle Stim., BioFeedback is great, if you can afford to learn how to use t. I have that game, but I'm having a hard time trying to learn how to use it. I would never make it without meditation, but I find it's getting more and more difficult to meditate! I go to a Pain clinic and They sure don't " just hand out my pain Meds without careful evauation everytime and I'm glad they check as close as They do. I see my Shrink and Boy do I ever need him! I would have never made it this far without him! I wish all my docs had his compassion! Everybody feels pain a little/lot different! Please don't try to be some kind of martyr because someone says that Opid Meds are " BAD " for you. I can't stand any of my Meds, but I could never make it through the day without them. I never thought I would be taking morphine and other hard line pain meds to fight pain every minute of every Day! I don't know what ones are worse, my OPOIDS, The Prednisone, Methothrexate, etc..... Now I get to try a new treaatment of IVIg and that scares me right now because it took so much research to find out anything about it. ( The cost is about $15,000 for one weeks treatment! I don't know how many I need and how long I'll have approval, but I sure can't afford it on my own! I hear that the symptoms will probably come back if I stop the treatment! I think I would really go nuts if my pain was gone for awhile, only to come back again when I could no longer get the treatment! I say check everything out as much as you can. Then use everything available to help you make it through another day. I hope I find out what the purpose of all this suffering is before I die! I can't go on anymore tonight , it's just too much too much tonight! Good Luck to all who have to fight this thing. I wish you my best and If I make it through next week with any kind of success, I'll let you know some details. E, themadmystyk > > In a message dated 7/20/06 5:21:47 AM Pacific Daylight Time, > children8_2000@... writes: > > > > I SEE A PAIN CLINIC CONVERSATION GOING ON. I TOO HAVE A QUESTION AND IT > > COULD BE THE SAME QUESTION. I AM GOING NEXT WEEK FOR THE FIRST TIME, AND ITS NOT > > REALLY THE PAIN MEDS THAT I AM AFTER, BUT THE REASON FOR MY PAIN. I HAVE NOT > > REALLY FIGURED OUT WHY WE HAVE PAIN WITH SARC & NEURO SARC, BUT I DO > > UNDERSTAND THE FIBRO THING. I ALSO HAVE A LOT OF PAIN WITH JUST SNEEZING IN MY LEFT > > LOWER LUNG. > > Lynne, > so many times the pain of sarcoidosis is the inflammation caused by the > granulomas. If we have granulomas in our blood stream (the blood cells show it as > ACE levels) then it's called " vasculitis. " This means inflammation of the > blood vessels. > If the inflammation is in the joints, ligaments, muscles--then most of us > have been told we have " fibromyalgia. " Myalgia means muscle pain. Fibro means > muscle fibers or ligaments. This comes on as the pain in your muscles. Many > times when they do the " muscle biopsies " they find that those wonderful > " trigger points " are actually sarcoidosis granulomas. Think of it like having a knot > in a spot on your shoulder. No amount of massaging or manipulation gets rid > of the knot. That is because we've developed scar tissue in this spot-- and > it hardens, makes the muscle fiber hard so that it doesn't " give " when it needs > to move, so we end up with a tear in the muscles around it, which then needs > repair, so our body sends the white cells to " heal " that spot, next come the > blood cells that clean out the white cells (these are the TNF-a and TNF-b > cells) and because our immune system doesn't get the signal to stop producing these > cells- we end up with a build-up of cells and proteins- which harden, and the > problem gets worse. > If this is happening to our nerve ends-- say the fingers, hands, toes, feet-- > then we develop " neuropathy " . With nerve ends, (the nerves are covered by a > protective sheath) the sheath begins to deteriorate- and we end up with a > " shorting " out of the signals to our fingers. It is the feeling of tingling, > burning, electrical shots, lack of sensation, numbness, etc. This is very similar > to what MS does-- the difference being that with MS, the " demylination " of > the nerve sheath happens at the base of the spine and works upward, with NS- it > starts with the ends of the nerves and goes back towards the spine. (This is > why MD's lean towards MS rather than NS.) It is also why I tell people that > my NS is like having MS, peripheral neuropathy, Rheumatoid Arthritis and > Dementia all wrapped in one. (That really explained it too SSDI's people- because > they already have the protocols for disability determination for those). I > know it made the difference in my getting my SSDI on the 1st request. > Now, if it's the inside of your bones that hurt-- it generally means that you > either have granulomas in the bone marrow, or on the bone itself. It can > also be a sign that your body is having to use all the available calcium for > other functions, so it's being leached from your bones. (I've found that if I > take a calcium/magnesium tablet when the inside of my bones hurt-- the pain goes > away very, very quickly.) Also, the MSM that I talk about, is a natural > mineral that should be in our foods, but we've engineered it out, and it is > necessary to control pain throughout our body. > Back to the bone pain. > If the bone that has the " bone spur " or " granuloma " build up on it, and it's > in the spot on your spine where the nerve goes out to the body, then any > movement or pressure against that nerve is going to send all kinds of pain signals > to the place that nerve control.s > If the bone spur is on your wrist bones, then the pressure against the > nerves- or if it's on a bone that sits on the discs, then you can get a bone on bone > grating type pain. > Lets say your holding a chicken bone, if there is a problem with the bone and > it's no longer smooth, then any movement will put pressure on the cartlidge, > and it's going to iritate that spot. Since sarcoidosis loves wrists, hands, > feet and ankles-- we end up with alot of pain in those areas. > It's brutal, and it isn't in your head. Since all our body joints and > cartlidge require fluid (synovial fluid) to stay lubricated-- and the only way we > get this fluid is by rehydrating, (drinking alot of water) it only makes sense > that if you are not drinking enough, or are drinking sodas, sparkling water, or > caffeine drinks- all which are actual " dehydrators " -- then your body can't > keep the fluid levels correct for your muscles and discs, and your pain > increases. > If the pain is in your liver, gallbladder, lungs-- it is probably from the > scarring or " fibrosis " of these organs. > I explain that our lungs should look and feel like a new sponge. With > sarcoidosis, the cells that would be the sponge cells, become old, hardened, split > up,== just like that kitchen sponge that needs to be tossed out. > Lynne, I hope this makes sense. My thinking isn't as clear as it should be > right now. But this is the " basics of pain. " > > For me, pain control means that I'm having to become aware that if my blood > sugar (high or low sugars will cause nerve pain)-- so refined sugars have had > to go. > The smallest amount of dehydration seems to really send my spine into > pain--as the discs themself become dehydrated (this does show on xrays) and then > there is the added pressure on these discs. My vertebrae have numerous " spurs " > which press against the nerve roots as they go out to my extremities, and > needless to say- it's an attention getter. > Also, dairy products produce Lactic Acid. This acid is what causes the > muscle pain and inflammation that we feel when we exercise. Our body needs to send > this acid out to the muscles, but we don't clear it as we should. I've found > that a Tums or Rolaids before I get on the treadmill can make a huge > difference. (This was a tip one of the MD's I worked for shared with us. He found > that by taking Tums before he went running stopped the muscle pain.- -hmm, cheap > fix!) > Food allergies, RED MEAT, all can cause a tremendous amount of pain. With > red meat, it takes 2-3 days to digest, and all this time it's hanging around in > your intestines-- and it's slowing the process of the ridding the toxins out > of your body. This toxic build-up is also pain producing. > > As far as what to talk to the MD about. Tell him what's going on. If you > have copies that explain proven sarcoidosis- take those records. If you have > copies of CT's, MRI's or the reports-- take those. > They need more than our " word " to prove to them that we have pain. Most > should know that sarcoidosis produces " sarcoid induced arthritis " throughout your > body. > Tell it like it is. Dont play down the pain, and don't overplay it. > Much of pain control is getting a good nights sleep, so they may give you a > sleeping pill. It also requires that the seratonin and norephineprin (sp) > levels be correct. These are hormones that control pain and pain sensation. So > they may need to give you an " anti-depressant " to help with pain control. > They should work you into a exercise program that may consist of starting > with no weight arm exercises. (Reps of not more than 2 or 3 of a movement and > working up) They may tell you if all else fails, sit in your chair and " march " > in place. (Again, 2-3 reps to start with). > If you have nerve pain-- there are a few meds that help. Cymbalta is getting > good reviews. Neurontin is so, so. There are a few others, but I'm not > recalling them right now. > They should help you with " Guided Imagery " , Guided Relaxation , Biofeedback, > Counselling to help with the issues of loss, Exercise Therapy to get you to > get your body moving at least a bit. > > With the diet changes, and the Guided Relaxation and Biofeedback, along with > massage, Pulmonary rehab exercise, and chiropractic-- I'm fortunate enough to > go without pain meds so far. The anti-inflammatories, the immune supressants > that are blocking the TNF-a and b production, the muscle relaxent - are > working for me. > I hope you find some answers, > > Blessings, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 , I had IVIG and mine cost 27,000.00 a month. 9Thank God for insurance) I had it for six months. It didn't stop my pain but I know what you mean. The Duragesic patch did stop mine and it was like a miracle. When I have pain now I get a little crazy because I don't ever want it to come back again. I know what you are going through and my heart just goes out to you. I pray that this works for you in a big way. Barbthemadmystyk wrote: I don't have an answer to "WHY PAIN!",but I do know I am now at a point that I have to use everything available and it still is no where near enough.I have Tens units, Muscle Stim., BioFeedback is great, if you can afford to learn how to use t. I have that game, but I'm having a hard time trying to learn how to use it.I would never make it without meditation, but I find it's getting more and more difficult to meditate!I go to a Pain clinic and They sure don't " just hand out my pain Meds without careful evauation everytime and I'm glad they check as close as They do. I see my Shrink and Boy do I ever need him! I would have never made it this far without him! I wish all my docs had his compassion!Everybody feels pain a little/lot different!Please don't try to be some kind of martyr because someone says that Opid Meds are "BAD" for you.I can't stand any of my Meds, but I could never make it through the day without them. I never thought I would be taking morphine and other hard line pain meds to fight pain every minute of every Day!I don't know what ones are worse, my OPOIDS, The Prednisone, Methothrexate, etc.....Now I get to try a new treaatment of IVIg and that scares me right now because it took so much research to find out anything about it.( The cost is about $15,000 for one weeks treatment! I don't know how many I need and how long I'll have approval, but I sure can't afford it on my own! I hear that the symptoms will probably come back if I stop the treatment!I think I would really go nuts if my pain was gone for awhile, only to come back again when I could no longer get the treatment!I say check everything out as much as you can. Then use everything available to help you make it through another day.I hope I find out what the purpose of all this suffering is before I die!I can't go on anymore tonight , it's just too much too much tonight!Good Luck to all who have to fight this thing. I wish you my best and If I make it through next week with any kind of success, I'll let you know some details.E, themadmystyk>> In a message dated 7/20/06 5:21:47 AM Pacific Daylight Time, > children8_2000@... writes:> > > > I SEE A PAIN CLINIC CONVERSATION GOING ON. I TOO HAVE A QUESTION AND IT > > COULD BE THE SAME QUESTION. I AM GOING NEXT WEEK FOR THE FIRST TIME, AND ITS NOT > > REALLY THE PAIN MEDS THAT I AM AFTER, BUT THE REASON FOR MY PAIN. I HAVE NOT > > REALLY FIGURED OUT WHY WE HAVE PAIN WITH SARC & NEURO SARC, BUT I DO > > UNDERSTAND THE FIBRO THING. I ALSO HAVE A LOT OF PAIN WITH JUST SNEEZING IN MY LEFT > > LOWER LUNG.> > Lynne,> so many times the pain of sarcoidosis is the inflammation caused by the > granulomas. If we have granulomas in our blood stream (the blood cells show it as > ACE levels) then it's called "vasculitis." This means inflammation of the > blood vessels.> If the inflammation is in the joints, ligaments, muscles--then most of us > have been told we have "fibromyalgia." Myalgia means muscle pain. Fibro means > muscle fibers or ligaments. This comes on as the pain in your muscles. Many > times when they do the "muscle biopsies" they find that those wonderful > "trigger points" are actually sarcoidosis granulomas. Think of it like having a knot > in a spot on your shoulder. No amount of massaging or manipulation gets rid > of the knot. That is because we've developed scar tissue in this spot-- and > it hardens, makes the muscle fiber hard so that it doesn't "give" when it needs > to move, so we end up with a tear in the muscles around it, which then needs > repair, so our body sends the white cells to "heal" that spot, next come the > blood cells that clean out the white cells (these are the TNF-a and TNF-b > cells) and because our immune system doesn't get the signal to stop producing these > cells- we end up with a build-up of cells and proteins- which harden, and the > problem gets worse.> If this is happening to our nerve ends-- say the fingers, hands, toes, feet-- > then we develop "neuropathy". With nerve ends, (the nerves are covered by a > protective sheath) the sheath begins to deteriorate- and we end up with a > "shorting" out of the signals to our fingers. It is the feeling of tingling, > burning, electrical shots, lack of sensation, numbness, etc. This is very similar > to what MS does-- the difference being that with MS, the "demylination" of > the nerve sheath happens at the base of the spine and works upward, with NS- it > starts with the ends of the nerves and goes back towards the spine. (This is > why MD's lean towards MS rather than NS.) It is also why I tell people that > my NS is like having MS, peripheral neuropathy, Rheumatoid Arthritis and > Dementia all wrapped in one. (That really explained it too SSDI's people- because > they already have the protocols for disability determination for those). I > know it made the difference in my getting my SSDI on the 1st request.> Now, if it's the inside of your bones that hurt-- it generally means that you > either have granulomas in the bone marrow, or on the bone itself. It can > also be a sign that your body is having to use all the available calcium for > other functions, so it's being leached from your bones. (I've found that if I > take a calcium/magnesium tablet when the inside of my bones hurt--the pain goes > away very, very quickly.) Also, the MSM that I talk about, is a natural > mineral that should be in our foods, but we've engineered it out, and it is > necessary to control pain throughout our body. > Back to the bone pain. > If the bone that has the "bone spur" or "granuloma" build up on it, and it's > in the spot on your spine where the nerve goes out to the body, then any > movement or pressure against that nerve is going to send all kinds of pain signals > to the place that nerve control.s> If the bone spur is on your wrist bones, then the pressure against the > nerves- or if it's on a bone that sits on the discs, then you can get a bone on bone > grating type pain. > Lets say your holding a chicken bone, if there is a problem with the bone and > it's no longer smooth, then any movement will put pressure on the cartlidge, > and it's going to iritate that spot. Since sarcoidosis loves wrists, hands, > feet and ankles-- we end up with alot of pain in those areas. > It's brutal, and it isn't in your head. Since all our body joints and > cartlidge require fluid (synovial fluid) to stay lubricated-- and the only way we > get this fluid is by rehydrating, (drinking alot of water) it only makes sense > that if you are not drinking enough, or are drinking sodas, sparkling water, or > caffeine drinks- all which are actual "dehydrators"-- then your body can't > keep the fluid levels correct for your muscles and discs, and your pain > increases. > If the pain is in your liver, gallbladder, lungs-- it is probably from the > scarring or "fibrosis" of these organs.> I explain that our lungs should look and feel like a new sponge. With > sarcoidosis, the cells that would be the sponge cells, become old, hardened, split > up,== just like that kitchen sponge that needs to be tossed out. > Lynne, I hope this makes sense. My thinking isn't as clear as it should be > right now. But this is the "basics of pain." > > For me, pain control means that I'm having to become aware that if my blood > sugar (high or low sugars will cause nerve pain)-- so refined sugars have had > to go. > The smallest amount of dehydration seems to really send my spine into > pain--as the discs themself become dehydrated (this does show on xrays) and then > there is the added pressure on these discs. My vertebrae have numerous "spurs" > which press against the nerve roots as they go out to my extremities, and > needless to say- it's an attention getter.> Also, dairy products produce Lactic Acid. This acid is what causes the > muscle pain and inflammation that we feel when we exercise. Our body needs to send > this acid out to the muscles, but we don't clear it as we should. I've found > that a Tums or Rolaids before I get on the treadmill can make a huge > difference. (This was a tip one of the MD's I worked for shared with us. He found > that by taking Tums before he went running stopped the muscle pain.--hmm, cheap > fix!)> Food allergies, RED MEAT, all can cause a tremendous amount of pain. With > red meat, it takes 2-3 days to digest, and all this time it's hanging around in > your intestines-- and it's slowing the process of the ridding the toxins out > of your body. This toxic build-up is also pain producing. > > As far as what to talk to the MD about. Tell him what's going on. If you > have copies that explain proven sarcoidosis- take those records. If you have > copies of CT's, MRI's or the reports-- take those. > They need more than our "word" to prove to them that we have pain. Most > should know that sarcoidosis produces "sarcoid induced arthritis" throughout your > body. > Tell it like it is. Dont play down the pain, and don't overplay it. > Much of pain control is getting a good nights sleep, so they may give you a > sleeping pill. It also requires that the seratonin and norephineprin (sp) > levels be correct. These are hormones that control pain and pain sensation. So > they may need to give you an "anti-depressant" to help with pain control.> They should work you into a exercise program that may consist of starting > with no weight arm exercises. (Reps of not more than 2 or 3 of a movement and > working up) They may tell you if all else fails, sit in your chair and "march" > in place. (Again, 2-3 reps to start with). > If you have nerve pain-- there are a few meds that help. Cymbalta is getting > good reviews. Neurontin is so, so. There are a few others, but I'm not > recalling them right now. > They should help you with "Guided Imagery", Guided Relaxation , Biofeedback, > Counselling to help with the issues of loss, Exercise Therapy to get you to > get your body moving at least a bit.> > With the diet changes, and the Guided Relaxation and Biofeedback, along with > massage, Pulmonary rehab exercise, and chiropractic-- I'm fortunate enough to > go without pain meds so far. The anti-inflammatories, the immune supressants > that are blocking the TNF-a and b production, the muscle relaxent - are > working for me. > I hope you find some answers,> > Blessings, > Tracie> NS Co-owner/moderator> Quote Link to comment Share on other sites More sharing options...
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