Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Sorry to hear that you are hurting! Not knowing the particulars, I think you should contact your OS and tell him/her the pain you are dealing with everyday. Hope things get better for you in the near future! With regards, Dale New Orleans, LA Upper/Lower 06/02/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Sorry to hear that you are hurting! Not knowing the particulars, I think you should contact your OS and tell him/her the pain you are dealing with everyday. Hope things get better for you in the near future! With regards, Dale New Orleans, LA Upper/Lower 06/02/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Hi Judy, The drinking will get better. Are you wearing a splint and bands? Do you have the zip and squeeze bags, they really helped me to drink as we're not suppose to suck. I had my surgery on Sept 10th, same as yours plus chin. For me it's slow healing but some others I've read are much quicker. Icing helps and later on some heat. I used a syringe to rinse my mouth out over the sink and that helped make me fresher. You are lucky to have minimal bruising, my bruising went down my chest and turned lovely colors. I'm still swollen but functioning at lower capacity at 5.5 weeks with the help of Ibprofen and Tylenol 3/c at night. Get the zip and squeeze bags for drinking, they ship fast...it saved me, until you get them I used a big syringe. Do you need recipes? Carole Anne > > Hi, > > > My name is Judy and I had upper and lower jaw surgery October 15th, > 2004. I have read some of the comments on this site and feel > fortunate that I had no bruising and minimal swelling. My pain has > not gone away and I am taking tylenol with codeine every 3-4 hours. > I am also having a hard time drinking still. Can anyone help ? > Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Hi Judy, The drinking will get better. Are you wearing a splint and bands? Do you have the zip and squeeze bags, they really helped me to drink as we're not suppose to suck. I had my surgery on Sept 10th, same as yours plus chin. For me it's slow healing but some others I've read are much quicker. Icing helps and later on some heat. I used a syringe to rinse my mouth out over the sink and that helped make me fresher. You are lucky to have minimal bruising, my bruising went down my chest and turned lovely colors. I'm still swollen but functioning at lower capacity at 5.5 weeks with the help of Ibprofen and Tylenol 3/c at night. Get the zip and squeeze bags for drinking, they ship fast...it saved me, until you get them I used a big syringe. Do you need recipes? Carole Anne > > Hi, > > > My name is Judy and I had upper and lower jaw surgery October 15th, > 2004. I have read some of the comments on this site and feel > fortunate that I had no bruising and minimal swelling. My pain has > not gone away and I am taking tylenol with codeine every 3-4 hours. > I am also having a hard time drinking still. Can anyone help ? > Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 Hi Pat, So sorry to hear about the recent falls and injuries. You are such a spunky lady. I hope you can get some help with pain. For me, the best way to reduce pain has been to find better metabolic support. Currently I am on a trial of L-glutamine which I do believe, at this point, is helping increase muscle strength and stamina and reducing pain. I will need a longer trial and gradual increase of dose to be sure. Here is the PDR entry for glutamine. http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/lgl_0125.shtml Glutamine is one of three ingredients in Juven, a medical foods product from Ross Labs that is designed to rebuild muscle. http://www.prosure.com/Juven/ Take care, Barbara > I feel badly that I seem to only post when I need help but I'm having > so much trouble coping with everyday living. I have had two bed falls > in the last month. Both times I suffered a concussion. Plus the first > time I fractured part of my skull just a sliver away from my left eye > socket. Thank goodness that it wasn't my eye socket. Then in the second > I managed to scrape the cornea of the left eye plus several other > abrasions on my face. > As you can imagine these falls haven't helped my aches and pains. Like > many of you I have had a lot of pain for several years. Sometimes it's > worse that others and sometimes it's really bad. Lately it's been so > bad. I contacted my neurologist about this and he told me to see a pain > specialist. I don't know how to explain to a pain specialist about the > changing pain levels. With my luck I won't be having much pain on the > day of my appointment. Has anyone else been treated by a pain doctor? > My impression from reading the list is that most people have pain > managed by their Mito doctor. > Thanks, Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2007 Report Share Posted April 24, 2007 DEAR GROUP, MY NAME IS KATHY,I was diagnosed 5 years ago and loss the use of both my legs. I have currently regained a little mobility but I am still unable to stand and walk. I am also experiencing a great deal of pain in my knees and other joints. has any one else had these problems? D oese aqnyone have any advice on how to deal with the pain? Please e-mail me it would be good to talk to someone in the same situation. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2007 Report Share Posted April 24, 2007 I am also experiencing a great deal of pain in my knees and other joints. has any one else had these problems? D oese aqnyone have any advice on how to deal with the pain? Please e-mail me it would be good to talk to someone in the same situation. HI kATHY, Welcome to the group. We have over 400+ members and we are all experiencing the pain of sarcoidosis. so you'll have plenty of people to talk too! Many of us have the sarcoid-induced arthritis-- and have found different ways to deal with the pain. I for one, don't take pain meds very often-- years ago I had a problem with abusing them-- so it's not a good thing for me. What I've been able to do is to use guided meditation, biofeedback, and massage to help with the pain. I also take MSM Powder to help with the mineral depletion. I order mine from PUREMSM.com. It's a natural mineral that we have engineered out of our soil and foods. I have also found that any amount of dehydration and any increase in my blood sugars-- add directly to the amount of pain I experience. I am on Plaquenil and methotrexate to help with the sarc induce arthritis, along with Remicade. I have the granulomas in my lungs, eyes, every joint and ligament- and my spine. So I'm very systemic! What kind of meds do they have you on? In our ARCHIVES AND LINKS - scroll down and you'll see the address- you can get a tremendous amount of information on medication choices, and topics that we've covered. You'll find that we have a vast amount of knowledge here-- all of us on the same path. Again, welcome, and know you've found a place to ask questions, vent laugh, cry-- we even have live online chats-- (also listed at the bottom of the page)-- so make yourself at home. Know that if we don't answer right away, that it is because the owners and moderators are all sick also- but we do check in daily-- so we'll do what we can as quickly as possible! Sincerely, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 Hi Kathy,I have arthritic and neuropathic pain r/t the sarcoid. I end up having to use Vicodin when it's really bad...can't use NSAIDs b/c history of a GI bleed. My rheum also gave me lidocaine patches. Since I'm back on the Cellcept (also take prednisone every day) my pain is getting a little better. Hopefully, after 4 months on the Cellcept, I can decrease my pred use and the pain will be a lot better or even non-existant. No one can understand sarcoid pain unless they have experienced it. It can be excruciating. Blessings,Beckykathy_ceamoore wrote: DEAR GROUP, MY NAME IS KATHY,I was diagnosed 5 years ago and loss the use of both my legs. I have currently regained a little mobility but I am still unable to stand and walk. I am also experiencing a great deal of pain in my knees and other joints. has any one else had these problems? D oese aqnyone have any advice on how to deal with the pain? Please e-mail me it would be good to talk to someone in the same situation. Kathy Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Becky, It's good to see you post! How are you doing? How's that new pacemaker thing? Sounds like you're doing better, and able to continue your treatment with the cellcept--- Blessings, Tracie************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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