Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 -Hi, My name is Patti and I will TRY to answer some of your questions - - In @y..., Brett and Kris <bkvan@p...> wrote: > Hello > > My name is Kris and I am mother to Duncan (just t urned 2 on Dec 13.) > > Duncan has been GFCF since Nov. 13 > He started Kirkman Super Nu Thera in Nov. and Enzymes from Houston in Dec. > > This month we are eliminating soy. My son is HIGHLY reactive to soy > > He never had loose stool issues until we started the diet. I began enzymes in hopes of helping with this problem. (I also suspect soy. And, since reviewing DAN notes on DANA'S site, in which it was mentioned that Soy is on the verge of being included in the GF/CF/SF banner, I am going ahead with this) > > Also mentioned in the DAN notes, besides liberal use of enzymes, was use of probiotics. > > I am having some difficulty understanding what a probiotic is and how to use it. Is acidophilus (spelling?) a probiotic? Ues it is with other extremely helpful bacteria's like bifidophilus and more. I think Dana has more info on her site. > > Also, I took the bottles of enzymes to my son's 2yr check-up. My doctor is not a DAN doctor but says that he believes any of the new things I am trying could be pioneering therapies. He says that his reservation about the enzymes is that enzymes are broken down by the stomach acids. He says sometimes there are enzyme therapies, but the form is encapsuled to survive stomach acids. The Housaton enzymes are plant based which can survive the stomach acids to continue onto the intestines. It is the animal proteases that do not survive the stomach acids. Check earlier post from today explaining in detail about that. They are working GREAT for my son. He looked at the capsules and was skeptical, but added that I hadn't mortgaged the house to buy them and it was my perogative to see if they work because they will not hurt him. > > I open the capsules and mix the powder into his juice or rice milk. > > What can you all tell me? > > Thanks in Advance > > Kris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 Kris, Patti did a nice job of answering your questions. You might also look at my post #11914 as far as convincing your doctor. I found I could add soy back after starting the Houston enzymes. Have you not seen any improvements with the enzymes? Do you give them with all meals and snacks? I will send you 's probiotic file which is full of info. > Hello > > My name is Kris and I am mother to Duncan (just turned 2 on Dec 13.) > > Duncan has been GFCF since Nov. 13 > He started Kirkman Super Nu Thera in Nov. and Enzymes from Houston in Dec. > > This month we are eliminating soy. > > He never had loose stool issues until we started the diet. I began enzymes in hopes of helping with this problem. (I also suspect soy. And, since reviewing DAN notes on DANA'S site, in which it was mentioned that Soy is on the verge of being included in the GF/CF/SF banner, I am going ahead with this) > > Also mentioned in the DAN notes, besides liberal use of enzymes, was use of probiotics. > > I am having some difficulty understanding what a probiotic is and how to use it. Is acidophilus (spelling?) a probiotic? > > Also, I took the bottles of enzymes to my son's 2yr check-up. My doctor is not a DAN doctor but says that he believes any of the new things I am trying could be pioneering therapies. He says that his reservation about the enzymes is that enzymes are broken down by the stomach acids. He says sometimes there are enzyme therapies, but the form is encapsuled to survive stomach acids. He looked at the capsules and was skeptical, but added that I hadn't mortgaged the house to buy them and it was my perogative to see if they work because they will not hurt him. > > I open the capsules and mix the powder into his juice or rice milk. > > What can you all tell me? > > Thanks in Advance > > Kris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 had some very good questions - I'll take a shot at answering. Explain to me about flares. Even though our meds may make life bearable for 80 percent of the time, sometimes our immune systems kick into overdrive again and we get a flare. Flares can be mild or severe. They are the same horrible symptoms that send us to the rheumy in the first place: Stiffness, swelling, brain fog, pain, fatique. Being stressed can bring on a flare. Changes in weather can bring on a flare. Illness and injury can bring on a flare. The movement of the planets in relation to the contents of the Doonsbury comic strip can cause a flare. (Which translates into Flares Happen without any apparant reason) If you have a flare (increase in symptoms for more than a few days) call your rheumy - your meds may need tweaking. Any suggestions for countering the fatigue (sometimes extreme) that goes along with PA or the Methotrexate? Have you been able to continue your accustomed lifestyle, both work and leisure? These go together for me. If I remain at the same task too long, I have more stiffness and inflamation. To remind me to take a stretch break, I have a kitchen timer. It goes off every 45 minutes. When it goes off I stop what I am doing and stretch. I also do this at work, and when doing long distance driving. The stretch break doesn't have to be long - getting up from my chair and getting a glass of water is plenty. This is ideal for me, since I am midly ADD. I am able to do the things I love: mainly quilting and reading. It has not interfered with my annual trip to the national quilt show, where we are on our feet from 9 am to 9 pm. Of course it helps that my customary traveling companions have RA. We understand each other and remind each other to take breaks. When in the midst of a flare, the best thing you can do is be kind to yourself. The following saying is posted in my kitchen and in my office: Accept that you are a living organism with limitations. Do not measure yourself by what you USED to do, or what others expect of you. Accept that you have a life-altering disease. Do the best you can. Don't forget to find joy in your life. I highly recommend the music and fiction of Jimmy Buffett to bring some joy into an otherwise bleak day. It is virtually impossible to scowl through 'Brown Eyed Girl', 'One Particular Harbor' or a rousing chorus of 'Fins'. Any tips for waking up in the night due to pain? That is awful, isn't it. Haven't found a solution that doesn't involve narcotics. FWIW, Steroids cause sleep disturbance. And fluid retention. And elevated blood sugar (the cause of the massive munchies most users experience) Prolonged use of steroids leads to Type II diabetes. Steroids can be very helpful. They also have drawbacks. Discuss with your rheumy and make informed choices. Your mileage may vary... CMPete Quilts With Poodle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2009 Report Share Posted December 31, 2009 Many many thanks Ann - and by the way, I am a Gator Dad! (They learn, we pay, LOL!) I don't often have depression, thank God. I often stay too busy for that. I am sure that I will learn from this group. Glad to hear about your positive outcomes with the cortisone. I am off to the gym now - again, and trying to stay encouraged about all of this! Bry http://www.af4k.com/bluelynx.htm http://www.reverbnation.com/madhadderband From: Ann Wood Fuller <gatorma1@...> > HI and welcome, >  > I am Annie and too I also suffer from C spine issues from an assault > 5 yrs ago and also on L-4 a small growth that infringes with my > sciatica and I also have " referred pain. " > I take pain meds and PT and also do home exercises and recently I > was also diagnosed with PMR and FIBRO- -two autoimmune diseases that > have limited my movement-- I was an athlete for years, then worked > with my husband in his construction company, until I got my MFA and > now I am devoted solely to my writing and my music-- (I too am a > musician but more classical, used to play folk guitar but my voice > is my main instrument and I sing with two major chorus' where I > live.) > I don't want to have the C Spine surgery because they go through the > throat and there is a 4% chance of compromising my vocal chords. > I got at least 6 epidurals and they helped tremendously - there is > no need for a general; they use a numbing agent and that is all you > need. The  steroid that they inject you with usually comes on in > about a day or so and it makes you feel good and helps with the > pain. > I am going to the pain clinic in two weeks  where I am going to be > evaluated for a better approach to my issues. I have tried traction, > swimming, core strengthening and walking, you name it--- I am also > depressed, (pain =depression, and vice versa.) > Hang in there and stay in the group; we are a good bunch! > Good luck  Annie > > A poet is, after all, to see > > > > > From: Bry Carling <bcarling@...> > Subject: Newcomer Questions > neck pain > Date: Wednesday, December 30, 2009, 9:12 PM > > > Hi everyone - I am new here and would LOVE to get some advice > and share experiences... I hope it's OK to ask this much in my first > message. > > I am age 59 and have had back pain on and off since about age 21. > At times I was helped by some things - and not by others (MedX > machine > for one.) Chiropractic treatments never helped much. Around age > 23 I was given an MRI and told that I had a herniated disk L4-L5 > and some scoliosis. I had numerous painful episodes from age > 23 to 40, sometimes ending up unable to get out of a bed or off > a sofa for days at a time. Fortunately these incidents were far > enough apart that I was able to function normally almost all of the > time. > > I am finding out that my experience is not that uncommon. Plenty > of > my friends have back problems, as do my mom and my daughter. > > However, at age 40 I had some lidocaine injections that helped > a LOT, and was given some orthotics that pretty much took away > the pain episodes completely. > > > Like others, I learned how to lift better, stand better, stretch, > exercise > etc. I was also found to have a fallen arch on my left foot. I > developed > some pain in the left foot from time to time. This comes and goes > but the foot is now pretty abnormal looking, with the fallen arch > and > the toes are pushed to the left. > > The orthotics helped me for about 8 - 10 years and I only rarely > got back injuries that hurt, and the pain soon went away. > After a while the pain came back more regularly in my back and > I noticed how restricted my movement was especially my left leg > losing more flexibility and the same for my lower back. > > Now I have been getting bad cramps in both legs, and tingles in my > left arm and hand. Also some back pain from time to time, and > sometimes a little difficulty standing for any length of time due to > the pain. > > I have tried physical therapy / rehab, new orthotics, a new > expensive > office chair, an MRI, a nerve conduction EMG test (OUCH!) and so > far no real help. > The MRI shows arthritis in several areas, and some pinching of > the nerves in both my lumbar region and neck. C6-C7, L4-L5 > and I forget where else... > > Now they say that I have spinal stenosis, arthritis, etc. Not fun. > > My latest attempts at self help include a weight loss program. > I have lost ten of the 40 pounds I need to lose in the past two > weeks. > Yes, even with the holidays(!) and I have also started going to the > gym, > which DOES seem to help a little already with the leg cramps and > certainly with the weight loss. > > I was taking Skelaxin, prednisone, Butalb-APAP-Caff for pain etc. > The pain specialist gave me some Voltaren Gel (Diclofenac) to try, > which is pretty useless as far as I can tell. I take the > prredinisone > occasionally for mouth sores. I know it can help back pain somewhat > too. > > The other physician who performed my neuro tests said that > they will probably want to give me epidural cortisone injections. > So I have been reading up on this. I know that they need to use > flouroscopy and one friend recommended having general anesthesia > for it too. > > I spoke with another friend today and he said that he had problems > with he use of this cortisone because the pain relief caused him > to not realize when he was getting hurt. He said that he did more > damage and ended up having to have two vertebrae fused. Just > like some other people who I have spoken with about having > bones fused, he was not pleased with the result. He still has > back pain and now has other complications too. (not sure what he > meant.) > > I spoke with another friend recently who has a titanium rod in her > back > and she is not at all pleased. She says that it is better than > nothing, but > still seems unhappy with it. Perhaps the restricted movement puts > strain on other areas. > > Now I feel some reservation about proceeding with the epidural > treatments if > my regular pain specialist doctor does in fact recommend them. > > Trouble is - I have a job where I have to do some lifting - > sometimes > as much as 50 pounds, several times in one day. I also play music > and need to lift my musical instruments in and out of a van etc. > > Thankfully I am still very active and there is a lot that I can > still do, > but it has been a painful period for me over the past 4 - 5 months > since things started geetting really painful. > > I am cautiously optimistic about the improvements I am getting with > going to the gym and strengthening my core lately, but wish I had > learned more about all of this years ago and taken my health > more seriously. I wish my family doctor hadn't taken it so simply > too, > until I demanded relief from the pain after several months of > trying things again and again that didn't work. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2009 Report Share Posted December 31, 2009 OH I went to University of Fl for my undergrad and my MFA and I live only 20 miles from it--- where are you? Annie A poet is, after all, to see > > > From: Bry Carling <bcarling@...> > Subject: Newcomer Questions > neck pain > Date: Wednesday, December 30, 2009, 9:12 PM > > > Hi everyone - I am new here and would LOVE to get some advice > and share experiences... I hope it's OK to ask this much in my first > message. > > I am age 59 and have had back pain on and off since about age 21. > At times I was helped by some things - and not by others (MedX > machine > for one.) Chiropractic treatments never helped much. Around age > 23 I was given an MRI and told that I had a herniated disk L4-L5 > and some scoliosis. I had numerous painful episodes from age > 23 to 40, sometimes ending up unable to get out of a bed or off > a sofa for days at a time. Fortunately these incidents were far > enough apart that I was able to function normally almost all of the > time. > > I am finding out that my experience is not that uncommon. Plenty > of > my friends have back problems, as do my mom and my daughter. > > However, at age 40 I had some lidocaine injections that helped > a LOT, and was given some orthotics that pretty much took away > the pain episodes completely. > > > Like others, I learned how to lift better, stand better, stretch, > exercise > etc. I was also found to have a fallen arch on my left foot. I > developed > some pain in the left foot from time to time. This comes and goes > but the foot is now pretty abnormal looking, with the fallen arch > and > the toes are pushed to the left. > > The orthotics helped me for about 8 - 10 years and I only rarely > got back injuries that hurt, and the pain soon went away. > After a while the pain came back more regularly in my back and > I noticed how restricted my movement was especially my left leg > losing more flexibility and the same for my lower back. > > Now I have been getting bad cramps in both legs, and tingles in my > left arm and hand. Also some back pain from time to time, and > sometimes a little difficulty standing for any length of time due to > the pain. > > I have tried physical therapy / rehab, new orthotics, a new > expensive > office chair, an MRI, a nerve conduction EMG test (OUCH!) and so > far no real help. > The MRI shows arthritis in several areas, and some pinching of > the nerves in both my lumbar region and neck. C6-C7, L4-L5 > and I forget where else... > > Now they say that I have spinal stenosis, arthritis, etc. Not fun. > > My latest attempts at self help include a weight loss program. > I have lost ten of the 40 pounds I need to lose in the past two > weeks. > Yes, even with the holidays(!) and I have also started going to the > gym, > which DOES seem to help a little already with the leg cramps and > certainly with the weight loss. > > I was taking Skelaxin, prednisone, Butalb-APAP-Caff for pain etc. > The pain specialist gave me some Voltaren Gel (Diclofenac) to try, > which is pretty useless as far as I can tell. I take the > prredinisone > occasionally for mouth sores. I know it can help back pain somewhat > too. > > The other physician who performed my neuro tests said that > they will probably want to give me epidural cortisone injections. > So I have been reading up on this. I know that they need to use > flouroscopy and one friend recommended having general anesthesia > for it too. > > I spoke with another friend today and he said that he had problems > with he use of this cortisone because the pain relief caused him > to not realize when he was getting hurt. He said that he did more > damage and ended up having to have two vertebrae fused. Just > like some other people who I have spoken with about having > bones fused, he was not pleased with the result. He still has > back pain and now has other complications too. (not sure what he > meant.) > > I spoke with another friend recently who has a titanium rod in her > back > and she is not at all pleased. She says that it is better than > nothing, but > still seems unhappy with it. Perhaps the restricted movement puts > strain on other areas. > > Now I feel some reservation about proceeding with the epidural > treatments if > my regular pain specialist doctor does in fact recommend them. > > Trouble is - I have a job where I have to do some lifting - > sometimes > as much as 50 pounds, several times in one day. I also play music > and need to lift my musical instruments in and out of a van etc. > > Thankfully I am still very active and there is a lot that I can > still do, > but it has been a painful period for me over the past 4 - 5 months > since things started geetting really painful. > > I am cautiously optimistic about the improvements I am getting with > going to the gym and strengthening my core lately, but wish I had > learned more about all of this years ago and taken my health > more seriously. I wish my family doctor hadn't taken it so simply > too, > until I demanded relief from the pain after several months of > trying things again and again that didn't work. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2009 Report Share Posted December 31, 2009 Hi , The epidural treatments that the doctors want you to have involve injecting a corticosteroid (usually not cortisone but they may call it a cortisone shot because that's what was always used in the past) close to the painful area (next to the dura membrane covering your spinal cord) in your neck or back. Once injected, the corticosteroid helps damp down the inflamation but soon diffuses out to the rest of your body. The reason to use a shot of corticosteroid rather than take it orally is because corticosteroids are very potent, but also very dangerous if not used carefully. They not only reduce inflamation but also break down body tissues like muscle, skin, cartillage and bones, which after all is part of the healing process--the getting rid of the damaged tissues. But the other part of the healing process, which corticosteroids don't allow is the building up those tissues again in a normal way. This is what the other class of steroids does, the ones that body builders and athletes use illegally. Prednisone is also a corticosteroid like cortisone and I'm concerned that you have a supply that you take whenever you feel you need it. The other very important point about taking corticosteroids, is that after a week or two your body will stop making it's own corticosteroid, which is called cortisol. This is why you need to gradually reduce the amount you take orally because if you go off it abruptly, your body will go into a kind of shock and you could die. Cortisol is absolutely needed by your body to survive, but the right amount, not too much or too little. I actually had 3 months of oral prednisone (15 mg per day) to help heal my cervical spine when the arthritic inflammation was so severe that epidurals did nothing. This was a very successfull treatment(also much cheaper) that allowed me to go through physical therapy to regain motion and strength. The physical therapy was very important and it's main goal should be to strengthen neck and back muscles so that correct posture and body mechanics can be maintained during the day.(Unfortunately many physical therapists don't seem to know this or they know but are lazy and don't analyze the posture and show how to improve it!) For the neck in particular, strengthening the upper back between the shoulder blades so that a CHEST OUT, SHOULDER BACK posture can be maintained easily during the day is very important. Slouching of the upper back during standing, sitting, and at the computer all cause the head to be too forward and the back neck muscles then have to strain to stop this heavy weight from falling forward. Also the front neck muscles get weak from underuse. Overused back neck muscles do not have a chance to heal when posture is bad. A lot of the pain is from these spasmed, overworked back neck muscles. If I go back to my old, slouched posture, my neck pain returns. I am one of those people with no curve in the neck, so for me good posture is a must. My head needs to be squarely on my shoulders. I have fairly severe stenosis with 3 pancaked discs at c-4,5, c-5,6 and c-6,7 with the spurs right up against the spinal cord pushing it away from the midline (mass effect it's called) and also severe stenosis at the nerve roots on the left side for C-5,6. I used to have terrible pain and tingling in my left arm and hand and do have atrophy in some of my arm and back muscles, but for the most part I am pain free after being a " neck " invalid for many years. If only I'd known then what I know now. Spinal problems can arise from many little body imperfections--loss of the normal lordotic curve in the neck, a bit of scoliosis, a fallen arch, a leg-length discrepancy but all can be improved by proper strengthening, posture and body mechanics. As a last resort there is surgery. It is of concern that you had a herniated disc at such a young age. If you do consider surgery, it is really important to be evaluated by a spine surgeon who can maintain the lordotic curve in your back if a fusion is needed (a spinal reconstructive surgeon as does scoliosis cases) or perhaps try one of the new surgeries where they only remove the bone spurs. Hope this helps, Rochelle > > Hi everyone - I am new here and would LOVE to get some advice > and share experiences... I hope it's OK to ask this much in my first > message. > > I am age 59 and have had back pain on and off since about age 21. > At times I was helped by some things - and not by others (MedX machine > for one.) Chiropractic treatments never helped much. Around age > 23 I was given an MRI and told that I had a herniated disk L4-L5 > and some scoliosis. I had numerous painful episodes from age > 23 to 40, sometimes ending up unable to get out of a bed or off > a sofa for days at a time. Fortunately these incidents were far > enough apart that I was able to function normally almost all of the time. > > I am finding out that my experience is not that uncommon. Plenty of > my friends have back problems, as do my mom and my daughter. > > However, at age 40 I had some lidocaine injections that helped > a LOT, and was given some orthotics that pretty much took away > the pain episodes completely. > > > Like others, I learned how to lift better, stand better, stretch, exercise > etc. I was also found to have a fallen arch on my left foot. I developed > some pain in the left foot from time to time. This comes and goes > but the foot is now pretty abnormal looking, with the fallen arch and > the toes are pushed to the left. > > The orthotics helped me for about 8 - 10 years and I only rarely > got back injuries that hurt, and the pain soon went away. > After a while the pain came back more regularly in my back and > I noticed how restricted my movement was especially my left leg > losing more flexibility and the same for my lower back. > > Now I have been getting bad cramps in both legs, and tingles in my > left arm and hand. Also some back pain from time to time, and > sometimes a little difficulty standing for any length of time due to the pain. > > I have tried physical therapy / rehab, new orthotics, a new expensive > office chair, an MRI, a nerve conduction EMG test (OUCH!) and so > far no real help. > The MRI shows arthritis in several areas, and some pinching of > the nerves in both my lumbar region and neck. C6-C7, L4-L5 > and I forget where else... > > Now they say that I have spinal stenosis, arthritis, etc. Not fun. > > My latest attempts at self help include a weight loss program. > I have lost ten of the 40 pounds I need to lose in the past two weeks. > Yes, even with the holidays(!) and I have also started going to the gym, > which DOES seem to help a little already with the leg cramps and > certainly with the weight loss. > > I was taking Skelaxin, prednisone, Butalb-APAP-Caff for pain etc. > The pain specialist gave me some Voltaren Gel (Diclofenac) to try, > which is pretty useless as far as I can tell. I take the prredinisone > occasionally for mouth sores. I know it can help back pain somewhat > too. > > The other physician who performed my neuro tests said that > they will probably want to give me epidural cortisone injections. > So I have been reading up on this. I know that they need to use > flouroscopy and one friend recommended having general anesthesia > for it too. > > I spoke with another friend today and he said that he had problems > with he use of this cortisone because the pain relief caused him > to not realize when he was getting hurt. He said that he did more > damage and ended up having to have two vertebrae fused. Just > like some other people who I have spoken with about having > bones fused, he was not pleased with the result. He still has > back pain and now has other complications too. (not sure what he meant.) > > I spoke with another friend recently who has a titanium rod in her back > and she is not at all pleased. She says that it is better than nothing, but > still seems unhappy with it. Perhaps the restricted movement puts > strain on other areas. > > Now I feel some reservation about proceeding with the epidural treatments if > my regular pain specialist doctor does in fact recommend them. > > Trouble is - I have a job where I have to do some lifting - sometimes > as much as 50 pounds, several times in one day. I also play music > and need to lift my musical instruments in and out of a van etc. > > Thankfully I am still very active and there is a lot that I can still do, > but it has been a painful period for me over the past 4 - 5 months > since things started geetting really painful. > > I am cautiously optimistic about the improvements I am getting with > going to the gym and strengthening my core lately, but wish I had > learned more about all of this years ago and taken my health > more seriously. I wish my family doctor hadn't taken it so simply too, > until I demanded relief from the pain after several months of > trying things again and again that didn't work. > > > > > > Quote Link to comment Share on other sites More sharing options...
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