Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Hey Tricia! Below is my email again. Let me know if there is still a problem. My worst pain is in my back from cervical spine to lumbosacral spine. I have degenerative disc disease, degenerative joint disease and many pinches nerves (according to my pain physician). I usually get my pain meds through my rheumy's NP. She's great (getting rid of him and getting a woman rheumy who still works with my NP! End of this month!). My prescriptions (being some of the strongest and usually a schedule 2 narcotic, cannot be called in. It either has to be hand delivered to the pharmacist or snail-mailed to the pharmacy. So far, no meds yet. All my docs are trying not to give me much in the way of medication (especially for some dumb reason, pain meds). See, they still don't have my main symptomatology diagnosed properly, so I get to suffer. Nice, huh! Hoping this new rheumy will recognize Stills. My old rheumy would only go so far as saying " some type of connective tissue or autoimmune disease. But, now my neurologist (who is going to do an EMG very soon on me) is definitely sure that between my malasorption syndrome and other GI problems along with long-term steroid use, I have developed severe muscle atrophy. The EMG will show to what extent the damage is. My eyesight has also decreased significantly in the last two months. I'm going to have my eyes checked again. I might ask to get of Plaquinil. Has anyone felt better with Plaq.? It's cold down here, Tricia! What little energy I have goes away within 10 minutes after being outside. I feel like a rag doll!!! Seriously, I do! Much love, Jul lilac_rose@... Stoughton, Wisconsin " /pain " Hi , This is going through the group, because I must have gotten something wrong with your e-mail..it keeps coming back. Where are you experiencing most of this unrelenting pain?? Do you think it is from inflammation? There is no reason that a person needs to suffer so badly with all of the meds available. When do you next see the doctor who writes out your scripts for your pain meds?? Couldn't you call him/her and explain how much you are suffering, and he/she could " call " in a script for something?? I don't always see my doctor in person. I have many scripts called to the pharmacy w/o an actual visit to the doctor's office. Maybe your doctor would " combine " a couple of different pain meds for more effectiveness. Please let us know how you are doing now...okay?? ~~tricia~~ Wisconsin...(about 2 hours North of Stoughton Wisc) wega2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Hi again Jul, Dumb me! It slipped my mind that the stronger pain meds can *not* be called in. Sorry. I only get the Tylenol w/Codeine called in. Your pain sounds like the same type in the spine area that one of our other members " Dave " has been experiencing, and he has been in severe constant pain, until his doc ordered some Oxycontin for him. He just had several MRI's done. Remember form Alsaka?? She also had such severe pain in the spinal area. In fact, no one has heard from her for way too long now. I am very concerned about her, and will be trying to call her soon to make sure she is " okay. " She had an Epidural injection done in her spine. The first one was like a miracle, she felt like a new woman...no pain. The second one didn't work, and the last we heard from her, she was once again suffering constant pain. How many years have these doctor's been " trying " to figure out what it is that is causing all of your problems?? It seems you have seen so many doctors, and none of them can come to any definate conclusions. Do you go to the Madison University Hospital to see a doctor?? Or is that just a " teaching hospital? " That's where they tried to kill me back in 1973, but I wouldn't let them! There were a couple of fairly nice interns, the rest were not out to make friends with any of the patients. (there goes the stress level!!) So, you have to wait until next week to find out if they will find something to help relieve your pain?? So sorry for you Jul! The e-mail addy you have on the end of your mail is the one I tried, I will try it again to see what happens. So, what do you take to get to sleep?? Or can't you get to sleep? That's a bummer, when we need sleep to help us heal..somewhat..and are denied even that. Love, tricia (it's really cold out there tonight!! I told Harley to let himself out, and close the door behind him...ha!) he's my dog. ************************************************************ Hey Tricia! Below is my email again. Let me know if there is still a problem. My worst pain is in my back from cervical spine to lumbosacral spine. I have degenerative disc disease, degenerative joint disease and many pinches nerves (according to my pain physician). I usually get my pain meds through my rheumy's NP. She's great (getting rid of him and getting a woman rheumy who still works with my NP! End of this month!). My prescriptions (being some of the strongest and usually a schedule 2 narcotic, cannot be called in. It either has to be hand delivered to the pharmacist or snail-mailed to the pharmacy. So far, no meds yet. All my docs are trying not to give me much in the way of medication (especially for some dumb reason, pain meds). See, they still don't have my main symptomatology diagnosed properly, so I get to suffer. Nice, huh! Hoping this new rheumy will recognize Stills. My old rheumy would only go so far as saying " some type of connective tissue or autoimmune disease. But, now my neurologist (who is going to do an EMG very soon on me) is definitely sure that between my malasorption syndrome and other GI problems along with long-term steroid use, I have developed severe muscle atrophy. The EMG will show to what extent the damage is. My eyesight has also decreased significantly in the last two months. I'm going to have my eyes checked again. I might ask to get of Plaquinil. Has anyone felt better with Plaq.? It's cold down here, Tricia! What little energy I have goes away within 10 minutes after being outside. I feel like a rag doll!!! Seriously, I do! Much love, Jul lilac_rose@... Stoughton, Wisconsin .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 I can't take aspirin, acetaminophen or ibuprofen because of my liver damage (another thing they don't know why its happening). The back pain has been since 2000. My " symptoms " started in 1999. Everything has come on and gone downhill from there. I have to use the UW-Madison Hospitals and Clinics. There have been some jerks that I outright " fired. " Well, I haven't heard anything from messages I left regarding pain meds. I hope I don't have to wait until 07/30/03 to get some relief! I'm just dragging myself during the day. For sleep clonazepam,Trazodone and Mirapex. Pain does wake me up at least once a night. Thanks so much for your concern! Luv, Jul lilac_rose@... Stoughton, Wisconsin Re: " /pain " Hi again Jul, Dumb me! It slipped my mind that the stronger pain meds can *not* be called in. Sorry. I only get the Tylenol w/Codeine called in. Your pain sounds like the same type in the spine area that one of our other members " Dave " has been experiencing, and he has been in severe constant pain, until his doc ordered some Oxycontin for him. He just had several MRI's done. Remember form Alsaka?? She also had such severe pain in the spinal area. In fact, no one has heard from her for way too long now. I am very concerned about her, and will be trying to call her soon to make sure she is " okay. " She had an Epidural injection done in her spine. The first one was like a miracle, she felt like a new woman...no pain. The second one didn't work, and the last we heard from her, she was once again suffering constant pain. How many years have these doctor's been " trying " to figure out what it is that is causing all of your problems?? It seems you have seen so many doctors, and none of them can come to any definate conclusions. Do you go to the Madison University Hospital to see a doctor?? Or is that just a " teaching hospital? " That's where they tried to kill me back in 1973, but I wouldn't let them! There were a couple of fairly nice interns, the rest were not out to make friends with any of the patients. (there goes the stress level!!) So, you have to wait until next week to find out if they will find something to help relieve your pain?? So sorry for you Jul! The e-mail addy you have on the end of your mail is the one I tried, I will try it again to see what happens. So, what do you take to get to sleep?? Or can't you get to sleep? That's a bummer, when we need sleep to help us heal..somewhat..and are denied even that. Love, tricia (it's really cold out there tonight!! I told Harley to let himself out, and close the door behind him...ha!) he's my dog. ************************************************************ Hey Tricia! Below is my email again. Let me know if there is still a problem. My worst pain is in my back from cervical spine to lumbosacral spine. I have degenerative disc disease, degenerative joint disease and many pinches nerves (according to my pain physician). I usually get my pain meds through my rheumy's NP. She's great (getting rid of him and getting a woman rheumy who still works with my NP! End of this month!). My prescriptions (being some of the strongest and usually a schedule 2 narcotic, cannot be called in. It either has to be hand delivered to the pharmacist or snail-mailed to the pharmacy. So far, no meds yet. All my docs are trying not to give me much in the way of medication (especially for some dumb reason, pain meds). See, they still don't have my main symptomatology diagnosed properly, so I get to suffer. Nice, huh! Hoping this new rheumy will recognize Stills. My old rheumy would only go so far as saying " some type of connective tissue or autoimmune disease. But, now my neurologist (who is going to do an EMG very soon on me) is definitely sure that between my malasorption syndrome and other GI problems along with long-term steroid use, I have developed severe muscle atrophy. The EMG will show to what extent the damage is. My eyesight has also decreased significantly in the last two months. I'm going to have my eyes checked again. I might ask to get of Plaquinil. Has anyone felt better with Plaq.? It's cold down here, Tricia! What little energy I have goes away within 10 minutes after being outside. I feel like a rag doll!!! Seriously, I do! Much love, Jul lilac_rose@... Stoughton, Wisconsin . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Hi Jul: Sorry your in so much pain. I have been there done that route! I have exactly what you are talking about from my cervical spine down to my Coccyx (tail bone) I have herniated discs slipped discs etc. Many nerves piched and nerve canals closed because of calcification around them. I have been in severe pain many times and that is what I was on the oxycontin for. I am glad that I am off of it now. I am present;y on 30mgs of MS-Contin twice a day which is Morphine Sulphate extended release and does a pretty good job but it doesn't wipe the pain out totally that's for sure. You might talk to your Doc about it because it works pretty good for me but then again as you know when it works for some it doesn't work for others. I sure do hope that you get some relief soon as it's no fun being in pain all the time and I can vouch for that. I have so many other things wrong with me that I would have to use two pages to list them all, so I won't, lol. You Take care now and TRY to be PAIN FREE! Love Ya! We Will Win Love Y'all Mom & Dad Bob & Carole Panama City, Florida Please Visit the International Stills Disease Foundation Web Site at: www.stillsdisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 sounds like wants to be on the Spine-ectomy list, too! Good wishes from me too, > > , > > I'm so sorry to hear your pain is worse right now. I wish I could help...I'm sending pain free wishes your way! > --- Babbitt > > > ________________________________ > From: Lambert <glambert28@...> > spinal problems > Sent: Thursday, September 24, 2009 10:03:12 AM > Subject: Re: To Dave > > > Hi , > I see you have a lot to take care of here so I won't keep you. I'm just lurking right now due to severe pain in my back as well as pain from other problems. Keep up the good work and I will be here as I can. > > Bama, george > > " He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion. " -unknown- > Quote Link to comment Share on other sites More sharing options...
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