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Finding the right Pain Dr./ meds. that work

Started by jorenee11 on 05/12/2010 4:32am

I have had severe back problems for the last 10yrs. I have had 8 back surgeries and due one of my surgeons "accidently" cutting my dura during one of my surgeries I now suffer from Arachnoiditis of the spinal Cord. It has been a total nightmare for me. The majority of my pain is my lower back and lower extremities with severe electrical shocking sensations going down my legs. I have numbness/tingling and multiple other symptoms. My pain level stays at approx. 7-8 on my good days! I have been on every pain med. available it seems and none have worked very well. Now to add to my problems I had gastric bypass 2 yrs ago and now I'm limited to which pain meds I can take . I can only take Immediate/Instant release meds.now . I currently am on Fentanyl Patch 100mcg/hr. change this every 48hrs. and for breakthru pain I have taken diladid, Lortab, Norco, Oxycontin, Opana and Oxycodone. I take a muscle relaxant, anti convulant, something for insomnia and something for nerve pain. I know that seems to be alot but unfortunately it's still not working. I feel as though my pain dr. isnt really listening to my complants and concerns. He doesnt even address the main problem thats causing me all my pain (arachnoiditis) , sometimes I wonder if he knows what it is. Does anyone know of a way I could fine someone who is more specialized to my diagnosis in my area? I just turned 40 a few months ago and feel as if I am in a 80yr. old body. I 've lost over 150 Lbs the last 2 yrs but cant enjoy my new found life due my other health problems. If anyone has any advice for me please let me know.
By the way I do suggest for anyone that does have a problem with chronic pain that has tried all the other pain pills, give the Fentanyl patch a try. They start you off at a much smaller dose and increase it as needed. It did work for me great the first 8 yrs. but now not so much!
Hope this might help someone out there.
Thanks all & God bless,

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Hi, I read your forum and my heart goes out to you. I have been a chronic paitient since I was about 40 and I will be 56 in June. My life and dignity and self worth has been stolen from me as well as I think you feel the same. In reading your post I agree with you 100% your Doctor is not listening !!! I first want to ask you are you sure he is a Board Certified Pain Management Doctor because that is all u want treating you. There is a website that would behoove you greatly to join that is all chronic pain people on it and you can register and create a forum for people to respond to your questions.I did and with an hour I had over 18 responses with people offering to help me. It is a great place to get advice on pain management as to what works and what does not, a place to vent for support and u could possibly find someone who lives near you who could advise you on how to find a proper Doctor. The name of the site is "Race Against Pain" You can also find on there by entering your zipcode pain managment specialist in your area. I went to one though off that sight and all they wanted to do is operate on me. My 2 siblings both had back surgery and both are much worse off for it. I am also a high risk surgery patient as I had staph infection from a hospital and spent a year in the hospital on very dangerous drugs to keep me alive as I died twice. I was also on these drugs an additional year at home so my immune system is shot. I cannot have any surgeries at all unless it is life and death the Doctor did not care and ignored me completely so I stopped seeing him. I am on a quest now searching for a Doctor myself. Another way you can find a Doctor is type in your computer Chrnic pain Doctors and the city you live in. Additonally there is a sight I was on earlier today that rates doctors i lost there web address but if you type in how to have a doctor rated you shopuld find it that is how I did. Additonally you and I have one thing working aginst us we become immune to the meds we are on a long time. Have you considered having a Morphine Pain Pump put in. You can ask several [people on the website I told you to join about the sucess they had with it which more were positive than negative. I am not a canditate for it as there is a chance for risk of infection espcailly with my immune system. I use to be on 300 mikes of Fentanyl and 6 Vicdin HPs a day and had some quality of life. However I got better and went off the meds only to reinjure myself and being on 2 MS Contin does not even touch my pain. I walk like a hunch back and can do nothing but sit at home. I cannot stand for more than 10 minutes. My quality of life is gone. I fear for myself greatly if I do not find the right Doctor because I cannot bear to live like this much longer. I am so sleep deprived I cannot stand it and go no where except the doctors. I can do nothing in my houisehold at all. Luckily I found a man that loves me and cares for me and understands. When I first met him I was not like this. The Doctor that treated me so well has moved out of state and I have had a most difficult time finding someone to replace him. Another thing that is good for you to do is keep a chronic pain journal for the Doctor who u will hopefully find will help him to address the seriousness of your pain. My email address is ellismichele@gmail.com feel free to write me if u just need someone to vent to or if I can help you in any other way. I hope this information was helpful to you. I do think you are a great canditate for the morphine pain pump. Obviuosly you are becoming immune to the meds you are on. I will keep u in my prayers.God Bless Michele

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Check outhttp://www.arachnoiditis.com and contact Dr. Antonio Aldrete at link provided under his photo for more info or to ask specific questions. He is an excellent 'listener' and was very generous with his time to me. He replied to my email within 24 hours! I also found Magnesium and Vitamin D essential for sleep, digestion, energy and even pain and muscle spasm. You have to take enough to count. A good osteopath

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I had gastric bypass surgery three years ago. I take Omerprazole 20mg twice a day that allows us gastric bypass patients to take any medication we need. Keeps us from getting ulcers. It's the first year you really have to watch every thing you take. I run a support group for gastric bypass patients. If you only know what these people do. The Alcohol they drink and the medicines they take. My doctors tell me that if I get the medicine in me it works. The same as everyone else with regular stomachs. Please talk to your doctor's I'm sure you can take whatever medication you need to at this point. My question is do we absorb the medication like everyone else? With the malabsorption and not having the stomach. Please let me know what your thoughts are.? It sounds like you know more than I do on this. Because running the support group i`m always looking for new information to help people. I'm having a fusion this summer. I think the bypass was easy compared to the back surgery.

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I to have had back surgery, in 2003 i had a lamonectomy 2 rods 6 screws 3 plates was doing fine 9 months later went back to wor on the sme day to the date 2 years fell into a open man hole fractured rt hip had to get a hip replaced then ended up with server back pain had a padel lead stimulator implant ,helped the left side but nothing for the rt. Now I;ve been diagnois with this condtion arachnoditis ,I have a lot of pain all the time, I play the panio for a living but it's getting wrose now what pls pray for me , i;m tried of taking pain pills but it seems thats all that sometimes helps but know i am starting to get use to them .

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Hey there everyone,

I'm very new to the site and have been reading some of the community discussions. I feel for each and everyone of you, as I am also in your shoes. I have been dealing with back pain for several years, constantly complaining to my previous doctor, pleading with her to help me but she disregarded my complaints and blamed my pain on Fibromyalgia. I was diagnosed with FMS 10 years ago at age 28; I was involved in a car accident in 1999. I became so tired of her, that I left and found another doctor.
I began seeing my new doctor in June of last year, the moment I told her about all this pain, she immediatedly wanted to examine my back. I was sent for a variety of tests, and xrays..... I wasn't prepared for the results.
We sat in her office and she read the results to me; I must have looked beyond puzzled because she says, "Trudy, the only normal part of your spine is the tip of your tailbone." I left there in shock..... I hadn't bothered my wife to come with me that day, had driven myself. I sat in the car, and my mind kept racing. You see I also have Borderline Personality Disorder; so trying to keep my thoughts under control long enough to get my butt home, was extremely challenging at this point. I took out my phone and sent a message to my wife.... She asked how things went... I said, "got some bad news, discuss at home ok."
Tears began rolling up... I choked them back and started driving home. Once I calmed down I sat down with the results, I wanted to know what these things actually meant. Spinal Stenosis, in the cervical spine.... lost lordosis, left - sided facet disease, tilt to the right. Thoracic spine... kyphosis... Lumbar ... stenosis and sacroiliitis... Sacrum... sacroiliitis. My doctor referred me to a pain management clinic, but the waiting lists are over 2 years long!!!!!! She couldn't prescribe much of anything for pain relief; until a few months ago. I had ended up at the ER 3 times, because I just could not deal with the constant pain. I broke down in her office and explained how it was that I felt... to the point where I just wanted to go to sleep and not wake up. Normal, every day things were becoming more and more difficult.... So she put me on morphine, 15 mg, three times a day. It does help about 80% of the time, which is a huge relief... the pressure is under control for the most part with this dosage for now. My doctor has been my saviour, she also has me complete a pain related package every few months, I am in the process of doing the first one. Some days are better than others, and I do worry about the fact that I take narcotics... I have faith though and the support of my family and friends keeps me going. I have a wonderful, loving wife who hardly ever lets me do anything! lol... it's frustrating a lot of the time for me, I get down because so many aspects of my lifestyle have changed, but I'm so thankful for all that I have.
Thank you for bearing with me... it's nice to know I'm not alone.

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