Guest guest Posted August 2, 1999 Report Share Posted August 2, 1999 , am so sorry to hear about the death of your little sister . July 7 we went to my older sister's funeral in Plattsburgh. She died of sclera derma. It sure is a different feeling when it's so close. Getting away with your children after will be good for you. You will be in my prayers. Take care and God Bless. Betty in Va. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 1999 Report Share Posted August 2, 1999 ...I am so sorry about you losing your sister. I really am...I hope the week at the beach helps you start the healing process. When I read your post I somehow overlooked the part about your sister (cataracts) and only read the part about the beach. I am truly sorry for your loss. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1999 Report Share Posted August 24, 1999 In a message dated 08/24/1999 3:39:23 PM Eastern Daylight Time, DaniGran@... writes: << Have you tried taking Tylenol arthritis? It's no substitute for pain meds, but it helps me until I am able to take the next one. >> e...yes, I took so much Tylenol it ate a hole in my stomach. I go back to the doctor and will be more assertive this time. I went in 10 days ago all primed to make my request for additional pain meds, but got intimidated as usual and did not. I guess I am afraid if I make him mad I will have to change doctors and risk getting one that would give less or even none. It is unfair that some legislative guidelines about the treatment of acute chronic pain have not been enacted. Something this important deserves to be treated with consistency and compassion, and not left to the individual doctors to make decisions based on his or her own prejudices and/or influenced by fear of censure from external non-medical agencies. I wonder why it's legal for a person to sit in their living room and drink liquor until they pass out, every single night if they choose, but for a person who is suffering from pain it is almost unthinkable for them to take 2 pain pills a day for relief. Maybe the alcohol industry has a better lobby... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1999 Report Share Posted August 25, 1999 --- Frog1945@... wrote: > > It is unfair that some legislative guidelines about > the treatment of acute > chronic pain have not been enacted. Something this > important deserves to be > treated with consistency and compassion, and not > left to the individual > doctors Have to disagree with you here. How do you know that the nationally legislated norm wouldn't be little or no drugs used for pain relief? Considering most peoples ignorance of these matters and our generally puritanical roots I could easily see this happening. Better that individual MDs make these decisions and you see another doctor if you are unhappy with your current treatment. === C McCullough thelockhorns@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1999 Report Share Posted August 25, 1999 In a message dated 08/25/1999 11:53:54 AM Eastern Daylight Time, DaniGran@... writes: << I came out and told my Dr., look, I have to work to get money to treat my illness. To accomplish this I need pain meds. >> le..thank you for telling me what pain meds you take. I need more than the one a day I am given, and will talk to my doctor when I go back on the 1st. You are soooo lucky to have found a doctor that is willing to help keep you as pain-free as possible. I honestly feel as if I were working and not " just a housewife " I would have been better served in the area of pain control. Thanks for the info...it is appreciated. I hope your pain is treated and the related depression is eased. Pain, can indeed, rob you of your life. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1999 Report Share Posted August 25, 1999 ...you are so right. I was once again being naive and thinking the powers that be would act in the best interest of the patient...and you are so correct in reminding me that it would not necessarily go that way. You definately have a good point there Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1999 Report Share Posted August 26, 1999 Annette, don't think of your self as just a housewife. Believe me I have been whatever you want to call the wife, mother, grandmother and worked outside as a nurse. Anyone that can pick up, scrub or whatever and still be patient and loving and cheerful is not just a housewife. We should be proud to be a housewife. It is really more rewarding to get a thanks from our husband as he is really our everything. Our children, grandchildren and " outside work " goes away. Outside work is only temporary and we can be replaced anytime. Have read your notes and you are a very positive person that people would enjoy having as a friend. Get that chin up. We need you and your postings. Betty in Va Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1999 Report Share Posted August 26, 1999 As I read further on and realize all the pain, suffering and horrible physical changes you have had to endure it makes me think twice about pain meds. God forbid this to happen to any other or all of us with Pand PA. When you described the physical changes and pain, what comes back to me was the burn patients that I had. The severe pain of dressing changes and surgeries plus the disfigurement. Believe me we medicated them as they needed it. We made sure their pain was the least it had to be so they could function. There was something about those patients that was almost a spiritual inspiration that we received from them. We saw beyond the external and they were beautiful people. That is probably like you in some ways. You radiate more from the inside while suffering. I pray that they can find the right meds to make you as comfortable as possible. God Bless Betty in Va Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1999 Report Share Posted August 26, 1999 In a message dated 08/26/1999 7:39:59 PM Eastern Daylight Time, Bcleary2@... writes: << We need you and your postings. Betty in Va >> Betty..thanks for the encouraging note. I often wonder if I haven't posted too often to the list...but then I read a post and immediately have a comment. Maybe I need to " cut back " like they say and limit myself to 2 or maybe 3 posts a day..lol...sorta like the listserve detox...lol I have never had a job outside the home..but I have the greatest admiration for all you women who juggle families and work at the same time. I don't know how you do it. I am in awe. We live out in the boonies on a farm in middle Georgia. Our home is in the middle of acreage...smack in the center of a pasture. My hubby spends his spare time on our tractor bushogging and I am basically a country lady who enjoys her flower garden and the wildlife. We feed a herd of deer right off the patio every evening. I would not trade my life, but I cannot help but think that posibly doctors give less importance to treating my pain than they would maybe the CEO of a big company. Right now this Prednisone has helped everything a lot...with the exception of my legs, which hurt badly. Of course, I only have 6 more days supply of it and then I expect to see the bad inflammation return. Maybe it won't...we will see. Betty, thanks again for the support. Annette )) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 In a message dated 08/27/1999 8:55:27 AM Eastern Daylight Time, Bcleary2@... writes: << it makes me think twice about pain >> Betty...what a kind post. I know it is very hard for us to " feel " someone else's pain. It is even sometimes hard for us to remember our own pain after it has dissipated...if we could actually remember it as it was, everyone would be an only child...lol. Right now, for me, the Prednisone has given me the first constant relief I have had in 6 years. Only the knees remain a problem. You do not know the how wonderful this feels to get some relief. By the way, I did mention the deformity and cosmetic aspects of my condition...but I can honestly say I don't give it a second thought. I have even caught people staring at the store and had to stop and think a second before reminding myself what they were staring at. My family can take credit for that. If they thought me ugly then I am sure I would see myself as ugly too...but they love me anyway so I have never experienced any negative emotions from what has happened. They forget I don't look normal and I do too. I believe we get our self-esteem from our families...and what our parents, spouses, and children think of us has so much to do with how successfully we are able to cope with life...and even how well we manage illness. When we know we are admired and loved...we have reason to fight...reason to keep going. I guess I am trying to say that I believe a persons emotional health plays a huge part in how they handle any disease. I know not everyone has the family support I have and I am sorry...in many ways they are having a tougher time than I am. You can deal with a lot of adversity when you have loved ones cheering you on. Annette ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 Thanks for your note Annette, I can almost picture the beautiful setting out in the peaceful country. We are outside DC where main topic is traffic. Believe me the happiest and most fulfilling yrs. was being home and hanging the clothes on the line and tending our little garden. Prednisone and mtx are mainly what keep me going. Am waiting for my 1mg. bottle to arrive so I can cut down. I have had lots of illnesses and surgeries, but am lucky. The only way someone can tell is I have all the side effects of prednisone. Am trying to lose some of the 35-40 lbs I put on this yr. as it will be better for my knees. I eat worse than our 2 little Dachshunds dogs. I have become a compulsive eater. Just put the food in and hardly even taste it. You should be treated as need be for your pain and to keep you comfortable and happy. You and your husband sound great and happy. We have been married for 43 yrs. and we are so thankful. My husband is wonderful to me also. The nursing home called me to work tonight, but I think those days are over. I do miss it so and the patients. I do stop by and see them occasionally. We are so glad to see each other. Many talk with only their eyes, but say so much. You put in as many posts as you want. It is good for us to know what others have gone through and what we should watch for. Have a nice and comfortable wk. end. Betty in Va. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 In a message dated 08/28/1999 10:45:16 AM Eastern Daylight Time, Bcleary2@... writes: << Prednisone and mtx are mainly what keep me going. >> Betty...same here. I have felt so much better since starting the Pred last week...I sure hope he will allow me to continue on a maintenance dose. After all the hollering I have done on this list for the past months about only having ONE pain pill a day...all of a sudden one is all I need. This Prednisone is remarkable. I have been married 35 years...to my best friend. We are rural people and we live in a rural area...lots of farms and cattle here. If you or anyone else wants to see some pics...here is my web site. <A HREF= " http://members.aol.com/Frog1945/froglin.htm " >Frog1945s Homepage</A> I have 2 daughters and they have links there also. My youngest is a Professor at a local college and my oldest has ben on TV here for over 13 years. They are the best daughters anyone ever could hope for. I would also love to see the homepages of anyone else who has one. Please include a link with your next post. Betty, I know all about the overeating. And you are soooo right..it would make it easier on the joints if we could lose the extra weight. I have almost psyched myself up to launch another infamous diet...maybe we can encourage one another. The trouble for me is that I HATE low cal foods. I had almost rather starve than eat them. I need to learn to eat for survival instead of for pleasure. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 I was wondering what pain meds most of you are on. Pepi mentioned Ultram, which I find to be helpful sometimes; I'm also on 700 - 1000 mg. of Neurontin per day as needed. Does anyone take anything stronger when the going gets really tough? I've been a bit scared to ask my doc for anything stronger, but if I have many more days like the last three when my neck, head, and spine hurt so bad I couldn't even turn my head, I might have to ask him for something. Or am I just being a weakling? Thanks for any input. Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Dear Charlotte, The only thing that I've needed pain meds for are the headaches that have me fantasizing that my skull had holes in it to let out the pressure. I take Tylenol #3 (acetaminophen with codeine) but only before bedtime. It works for me but a lot of people don't like codeine because it can make you feel dysphoric (as opposed to euphoric or happy). That's why I take it when going to bed. I don't think I could stay awake on pain meds but the people in more pain on pain meds chronically develop a tolerance to them and can function well. You'll have to wait for their input. Mine isn't too comprehensive, I know. I guess I'm lucky I don't have lots of pain. I just have to spend hours in bed and can't find anything. Good luck with your disability. I spent yesterday filling out a form for my Social Security review. They said it should take 30 minutes and it took me 3 hours. Maybe it takes everyone but Lyme patients 30 minutes. Hugs, Eileen, NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Hi Charlotte, When I relapsed a year ago, my headaches were so bad I felt like just putting a gun to my head. I had them from the moment I woke up til I went to bed, and no pain meds worked. They did an MRI, changed meds, all sorts of things. I work as an office manager for a chiropractic and acupuncture center, and at my wits end decided to try acupuncture. I noticed a difference after my first treatment, and about 5 treatments later, my headaches were gone. GONE!!! It was amazing. I get treated about once a month now, just to keep it up. Acupuncture is wonderful for pain management, it worked for me. The problem is, its expensive and most insurance companies don't cover it. But just a thought. Hillary __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Thanks, Eileen. I've heard others try Tylenol 3, too. (It probabably would have taken me at least 3 hours to do SS form!) Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Hillary, thanks for the accupuncture idea. I tried it a couple of years ago (when I still thought I had " fibromyalgia " ) and for some reason, for me, it made the symptoms worse. I tried two different practitioners. They both urged me to keep with it but I couldn't stand it. Perhaps now I'll give it a try again and have a different reaction. My insurance doesn't pay for it either, but I've spent a lot of money on a lot less helpful things! --charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Hi All, Anyone tried qi-gong for pain? Saw a segment on Ripley's Believe it or Not - MD with severe arthritis was on show - he'd tried everything conventional medicine had to offer, with no relief. Said the pain is GONE after qi-gong txs. (Just a thought.) Blessings, Chris In a message dated 10/04/2000 12:48:42 AM Central Daylight Time, CHBasset@... writes: << Hillary, thanks for the accupuncture idea. I tried it a couple of years ago (when I still thought I had " fibromyalgia " ) and for some reason, for me, it made the symptoms worse. I tried two different practitioners. They both urged me to keep with it but I couldn't stand it. Perhaps now I'll give it a try again and have a different reaction. My insurance doesn't pay for it either, but I've spent a lot of money on a lot less helpful things! --charlotte >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 I love oxycontin!! Helps my muscle pain and headaches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 i have vicodin for bad pain..it helps alot. In a message dated 10/2/00 1:45:43 AM, CHBasset@... writes: <<I was wondering what pain meds most of you are on. Pepi mentioned Ultram, which I find to be helpful sometimes; I'm also on 700 - 1000 mg. of Neurontin per day as needed. Does anyone take anything stronger when the going gets really tough? I've been a bit scared to ask my doc for anything stronger, but if I have many more days like the last three when my neck, head, and spine hurt so bad I couldn't even turn my head, I might have to ask him for something. Or am I just being a weakling? Thanks for any input. Charlotte >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 In a message dated 12/7/00 8:07:44 AM, ferraroa@... writes: << He has been actively treated for 2 years w/ no success w/ many different antibiotics, and pain medications which did not help >> - I am curious to what meds your husband has been taking. Also was he tested by a PCR blood test sent to Igenex for the co-infections of babesiosis and ehrlichiosis? sue in nj I have plenty of suggestions which has helped us achieve great results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 , Please let me know how your husband does with this new medication. I know what you mean, every time I get a new RX for pain, I get my hopes up, and so far nothing works. I live in Southern land - St. 's County, the very Southwest tip of land. How about you? Vicki, Md My husband is to start on duragesic patches on Friday. He has pain like you mention above. He has been actively treated for 2 years w/ no success w/ many different antibiotics, and pain medications which did not help...........we try to get excited every time our doctors change his medication...... from MD ......where in MD are you from? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 I'm from land too, Harford County, and was diagnosed two years ago with Lyme and after about 6 weeks or so on Doxy, I was then given another blood test where only 1 band was positive and was told that I didn't have Lyme anymore. I suffer from joint pains in my legs often, most of the time during the cold windy weather. My ankles swell now and then too. I've just basically given up and figured that I was cured. Anne Marie Product Manager for Non-Stockpile Chemical Materiel ATTN: SFAE-CD-N (Deputy Team) Bldg E4405 Aberdeen Proving Ground, MD 21010 Email: <mailto:anne.rhodes@...> anne.rhodes@... Re: [ ]Pain Meds , Please let me know how your husband does with this new medication. I know what you mean, every time I get a new RX for pain, I get my hopes up, and so far nothing works. I live in Southern land - St. 's County, the very Southwest tip of land. How about you? Vicki, Md My husband is to start on duragesic patches on Friday. He has pain like you mention above. He has been actively treated for 2 years w/ no success w/ many different antibiotics, and pain medications which did not help...........we try to get excited every time our doctors change his medication...... from MD ......where in MD are you from? eGroups Sponsor <http://rd./M=102308.1038796.2731130.908943/D=egroupmail/S=17001060 12:N/A=466331/?http://www.> Click Here! HAPPY HOLIDAYS!!! Easy Reference: Send a blank email message to: -Subscribeegroups - Subscribe to the list through email -Unsubscribeegroups - Unsubscribe from the list -Digestegroups - Switch your subscription to a digest format -Normalegroups - Switch your subscription to normal Please send messages not related to Lyme disease (this includes humor) to -Offtopicegroups Archives can be accessed at lyme-aid <lyme-aid> Please visit the sister site at http://clubs./clubs/lymeaid <http://clubs./clubs/lymeaid> This is the primary chat site for . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 > Another thing I haven't seen mentioned here thus far, is government > restrictions on prescriptions for painkillers - particularly the > narcotic drugs such as vicodin, darvocette, etc. So far I haven't had > this problem, but I would be curious to know if anyone has. > > -- Ron > When I first started getting pain meds from my Rheumy we agreed that I would get my pain meds from my primary doctor the majority of the time. 1.Primary doctor is local (some of the meds are 30 day original prescription only) 2.The DEA keeps track of how much doctors prescribe. I would think a Rheumy would have a higher amount of pain medication being prescribed. I have had the prescription card folks send me a notice that my pain med prescriptions were too much when I was ill and the doc had to change the meds around. Just because I had the meds didn't mean I was taking them. For instance when the doc prescribes 2 every 4 hours as needed the pharmacy has to fill the prescription as if I was taking 2 every 4 hours. Bottles and bottles of medication:) The Vicodin, Darvocet, Lorcet, Lorcet plus all fall under this reasoning. The Oxycontin is currently prescribed for me as if I was taking 40mg in the am and 30mg at night. This means I have to get 10mg pills and can use as needed. W/ the 30 day restriction I get 210 pills but have been able to cut back to 10mg every 12 hours most of the time now with days of 20 or 30 depending on the weather and what I am doing in my life. The doc is pleased that a prescription can last me for 3 months now. The DEA might not like it but this works. We take what we need. We never get rid of all the pain. Take care, PatB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Over the last 9 months, I've learned that muscle relaxers also fall into this tightly controlled area. " Pat B " wrote: > When I first started getting pain meds from my Rheumy we agreed that I would get my pain meds from my primary doctor the majority of the time.< In my case, it worked out better for me to get them from my RD after more than a few conversations about my personal situation. Both my primary doctor and RD were making noises about " addiction. " During my last visit with my RD, my argument was, " I do NOT have a 'dependent personality' -- when I feel better I 'forget' to take the extra drugs. I have never been one who enjoyed being 'out of control' and have never understood anyone who found pleasure in getting drunk or high on alcohol or drugs. She must have believed me because she wrote out prescriptions with 6 refils for Flexeril and Ambien. Both doctors are within a couple blocks of each other, so it makes little difference for me -- this time. > 1.Primary doctor is local (some of the meds are 30 day original > prescription only) My insurance will only authorize enough for 30 days, so we have to really " do the math " to cover the PRNs (as needed). > ... Just because I had the meds didn't mean I was > taking them. Isn't it interesting how they can appear to belive that we don't have any judgment in these things? And to think that just a few years ago many of the OTC drugs were prescription only. So far, I haven't had any opposition from the insurance company but I have found that one needs to watch the pharmacist's counting which can be inaccurate at times (I'm sure because they're busy). > We take what we need. We never get rid of all the pain. Exactly!! It has been difficult for family and friends to understand that it never goes away but varies in intensity. Plus, I've found that my " mood " has a lot to do with how well I tolerate pain. It hurts much more when I'm already 'down' or 'depressed.' Someone asked me just last week, " What made this come on all of a sudden? " My answer: there was no " sudden " to it; it's taken 30 years to get to this point where I could no longer push it to the back of my mind and keep going as if it didn't bother me. FWIW, Patty B in the Pineywoods of East Texas Quote Link to comment Share on other sites More sharing options...
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