I have been going through a lot with pain in my life over the pat 20 years - the past 6-7 being the worst. I have been on oxycontin and breakthrough along with Cymbalta and xopicone for sleep. Recently I have been doing the MELT Method of self massage for pain control and it has increased my strength and core as well as released a lot of muscle tension. I have been going off the Oxy slowly since christmas and have managed to go from 180mg to 120mg and that has been hard. I am on half the Cymbalta and sleeping aid. I am coping mentally a bit better and managing to balance my part time work ,my kids and stuff. My marriage is suffering due to my pain problem but the pian clinic suggests that I can think my way out of this. If I just meditate and excersize and eat right I will be fine. I have mebrased all that and I am living it. Still in extreme pain.......WTF Even at my highest dose I am still in pain. I do not know why I am taking this stuff if i stillhave pain. I think I am not taken very seriously due to the fact that I need these drugs and wish I could stop and see what if anything this persciption for helping is actually hurtng.
It is not advised by doctors to go off but hell they can't offer me anything else? I do not know what else to do. Mabey the side effects of the narcotics are contributing to my muscle pain and headaches? From my other posts you can see I have many diagnosises that mean nothing because the more complicated I get the less accountability the docs have to pinpoint anything and see a treatment.I had a fusion S1L5 25 years ago, now I have arthritis in my spine and Kissing Spine disease or Bastrups disease...just diagnosed with auto immune disease Sarcoidosis. I have a neurogenic bladder, 2 recent bunion surgeries last year, etc.... I am thinking of going to the Chiari Institute in New York and give them a chance to figure this all out. Also, there is a doc in SEattle that I may see for a second opion. If I don't have hope that something can be found and fixed then I can't do this anymore. I must look like a hypocondriact still searching for more diagnosis but I know in my heart there is something wrong that they are missing and I know now that I am coping better that I am not in pain all the time because I am depressed! God I am sick of that. My only other choice it seems to me is to go to Vancouver Island to a medically supervised detox centre and see if I can survive the meds don't wrk anyway and maybe I would have more self respect.
I am grasping here I understand that. I just really need someone to listen. Thanks in advance.
Hi and Welcome, It sounds like you have a lot going on and I feel like I understand some of fwhat you are going through ! I also suffer from chronic neck and back pain and have a very high tolerance,very little meds really help my pain !Nothing takes it away but my medication does help bring it down some ! So maybe you should ask your Doctor about trying something else for pain !Recently I did that !Many of us understand this and have been through it ! Best of luck ! I'm here for you ,77grace
you are so sweet. Yes I to have Chiari 7mm . The Bastrups is related to the films and arthritis but there is severe clicking with bending on more than one level. I too am having a hard time distinguishing what is causing my pain. I have been taking a break from doctors, writing about it and focusing on it trying not to let it define who I am . I was reading a great book called,,,,Why People Don't Heal (can't remember the author) also, The Brain That Changes ITself. Both very good. The Sarcoid is auto immune and I had a biopsy of my lymph nodes in my sternum....It wouldn't account for the muscle pain, that moves throughout my body in little hard tight lumps that honestly sting...legs, stomach arms...excersize has helped but I can't sit still or relax. The pain is maddening when I am not moving around. I get restless leg over 50% of each day and headaches everyday lasting 10minutes to 10 hours depending on how I cope with it (bad ones..migraine onsets). My spine hurts to take a deep breath and my legs feel like they are soaking in battery acid. I guess that why I don't talk much about how I feel. I have a lot of support and my life is mostly coping with a disability. I just don't know why I take narcotics if I am still having all this pain. it really sucks and I am sure you know how hopeless it can all look sometimes. I have great kids and I just feel like one of the moms they talk about on Oprah.Pill popping soccer mom. I am doing the best I can but I look stupid still searching for relief and people closest to me say "can't you accept that you have to deal with this for the rest of your life?" I want to say NONNOOO I won't cause My gut tells me there is something causing nerve pain pulsing through my legs I am not crazy. On the meds I feel like I am just trying to justify taking it. If I wasn't aking them and I still had the pain I might be more credible. I am at a loss. I really appreciate your input and care and genuine concern - you have no idea what a relief it was that someone relpied. Thank you so much. Iwill check out the sarcoid link and get in touch with chiari support. I think we couldn[t afford New York. I am in BC canada so I plan to get to SEatle and see a neurologist there - just to put my mind at ease that we aren't missing something that can be fixed. If this is how it is I can do it but I can't give up until I am satisfied. I'm not doing it for the attention that is for sure. Since my 12 weeks in a wheelchair last year for 2 bunion surgeries, I have redefined myself on so many levels but the pain remains and it wears me out. It feels so selfish to go to SEattle for a second opion! I am not like that usually. You really are helpful and again , very sweet. Thank you Beth. Lisa
thanks 77grace. you are right, I should ask for something else for pain. I just get the same talking to about "keeping me functional". It is nice to hear people do understand like you. It does mean a lot and I appreciate the intrest. What else is there for pain? I look like I am doing alright. I feel like my mom thinks I live in my head too much, although there are lots of reasons to have this pain just no treatments that are worth the risk another fusion, chiari malformation decompression surgery..... It is all very frustrating. You probably know. Thanks again. Ill keep ya posted on SEattle.
HI findingpeacewithpain, I'm glad your replied ! I remember hearing that same statement, "keeping you functional " Yes I grew tired of that too! I still have quite a lot of pain sometimes even though I am on high doses of Narcotics !My threshold for opiates and pain are shot ! But I I recently changed my med routine a little and hopefully when I go back to what worked it will still work !Time will tell ! Take care and have Peace, 77grace
Hi Grace77 Sorry we have been away on holidays. I am ok. Still functional. I am looking into getting my spine looked at one more time from a doc in Seatlle and trying PROLOtherapy. It is supposed to help with the hypermobility above my lumbar fusion. Maybe this will help? I am am getting a little hopeless but trying to stay positive. How are you doing.? I won't be back on computer for a few days but Ill be thinking of you too being functional. Honestly I want to live life and not just cope with life. Crazy ? Lisa
I stopped taking opiates 3 months ago. I have had back disabilities since I was 7, surgery at 14, and the pain became much worse at age 20 (I am now 27). Since I have stopped the opiates, I have had horrible pain most of the time. In addition to the back pain, I have also developed severe neuropathic pain that when it occurs, is 100% debilitating and sends me into a massive panic about how I can possibly survive in this state, especially when compounded with back pain. Back pain is still by a long shot my biggest problem. Right now, and since I stopped the opiates, I have not done anything but go to doctors every single day that I can manage to drive. I plan to return to school in 2 weeks, only taking 1 class, but I worry if I will even be able to handle anything. I honestly don't want to go back on the opiates, but I don't think there is really another option. I do not want to live in this much pain. It is impossible to find joy in life like this. I go to psychiatrists and therapists to help my mood, but I have yet to figure out why I would want to live in this condition. I am on Lyrica and do physical therapy which has helped some. I see a new pain specialist in 2 days who my neurosurgeon said had a more "balanced" approach in that he doesn't automatically do surgery or dispense narcotics and he said that is the type of doctor I need. He also said that intrathecal pump (which was not advisable at my age AT ALL), a neurotimulator (he thought a good option) or opiates are what could possibly happen. I am trying to read books on how to live in chronic pain with "stories of hope" but I can't find any hope in my situation. The doctors say I will be in this or worse pain for the rest of my life and I am going to have to learn to live with it. I am not sure I want to live with the pain. The pain destroyed my significant relationship of 4 1/2 years and I can't really have a relationship in my condition now obviously. The pain has destroyed my life and I am trying to get some support from people who might understand. My mother and sister deal with chronic pain, but not to the same degree as I do. I don't like to rank my pain with others because pain is so individual, but my sister can hold a job and although my mom is on disability, she functions better than I do in her 70s. I am 27. she does take MS Contin. I was taking 60 mg Oxycontin 3x a day and 4, 10 mg instant release Opana for breakthrough pain. Before Actiq stopped being covered by insurance, I was using that for breakthrough pain and nothing worked as well as that. I feel I am probably doomed to a life of opiates if I can ever get my doctor(s) to prescribe them to me again. I fear I will not get adequate pain relief again. My doc that used to prescribe me opiates tried to put me on the butrans patch but my other doc said that it was likely too weak to help the pain and I would just get dependent on them and so I said screw that. I guess the neurostimulator is something I should get. I have plenty of reservations about another back surgery because my spinal fusion , which a neurostimulator is not nearly as serious a surgery , was such hell. I need to switch my primary care physician, rheumatologist, and psychiatrist because they are all way too conservative. I have given them all a chance to help me and they just tell me I have to learn to deal with it. I dont want to deal with it. I can't deal with it. I know pain could always be worse and I am thankful for every day I am not in such pain, but if my pain continues to be as bad as it has been, even if it is not everyday, I absolutely cannot tolerate it. I am desperate to get out of my current situation
Dear Chris I can sympathize with you but not as long only 9 years but they have been hell I have had also so many different types of needles in my nerves and back and so many different opiates and I hate them all with the exception of Targin. It still is an opiate but you wouldn't know it. It may not cover all the pain but it does help a lot. You don't get that off your head feeling. Your thoughts are very clear as in pre drug use. Also what is being studied and is working really well is natural. turmeric root. It is Orange and not the best tasting and has to be raw or in tea. I have 3 x per day. 3 heaped table spoons with my food on top fresh or with ginger in my tea with it.Major studies in Australia and a lot of people find that it helps. I just had Radio frequency Simulation Ablation. Have a read up on it. I had it about 1 week ago and still in bed but they say it is best by others to leave it for 2 to 3 weeks with cold packs and then heat. I have found it has helped so far though the Key hole site is still a bit painful. It only works for 70% and through another sight I read some horror stories but I bit the bullet and went for it. They warm up the nerve to just burning it to block the pain receptors. For some it doesn't work, on others 6 to 9 months some for up to 15 years. Fingers crossed if not i will go for the procedure I think you mentioned were they put a cord up your spine and insert a battery into you and you just turn it of and on when you need a small charge. The Targin is the best out of the lot though as it will not ruin your bowl when you are older or ruin your stomach either. it come in 40/20mg or 20/10mg dependent on your needs. I do not want to be wearing a nappie in a few years. They have said in a few years I am looking at a wheel chair but no promise the pain will be gone. I did meet the only person who was not scammed by stem cell. she was a full Quad and now can use her arms upper body, still a wheel chair but can where calipers if she goes out. You really have to hunt down the right person. That is going to be my second last option though expensive was $30,000 or $50,000 and 6 months at a medical facility in India at the time her specialist was not Indian though. Good luck. Research Research Research sit with you lap as I do and just keep looking for new things are coming up all the time. Keep positive and I know how hard that is when you are not crying but tears just run down your face from the constant agony. It is hard but there is options until you find something more permanent. You are 20 years younger than me so have some faith. they are going leaps and bounds now in medical tech. ta
I have been away from computers for a while now so I am sorry I haven't replied. Thanks for sharing your story and I do understand how you want to get out of your current situation. I do too. I have been on the Oxy's and immediate release like you for over 6 years. I have recently turned to yoga / pilates and the MELT Method (like, melt your pain away) . It seems really silly but it have released some of my pain in my legs and back. Essentially it is self massage and gentle rocking on a rolled up towel lying on the floor. I found out about it by watching Dr. Oz. It has made me feel more in control and active n recovery instead of waiting for something to work. I still suffer from pain everyday all day but the walking and this floor work has given me back some control. I have reduced the narcotics by 60mg pr day and less breakthrough. I have cut the Cymbalta in half and the sleeping aid in half. This life has ruined my relationship too. I am still married but barely. There is someone out there for you who will love you the way you are. First you have to love yourself and find some peace in you. I truly believe your journey is not in vain if we can just find a way to get support to give back a bit. I have your pain at 27 too and I was not as ok with it as I am now. I am still angry, ashamed and hopeless at times but it does not consume me. I think walking helps....I have 2 full on bunion surgeries last year with 6 pins in and out twice to fix a break in my bunion so I was in a wheelchair for 6 weeks each time and recovery has been slow. I have lost 20 pounds and as long as I get to stretch twice a day for 30-40 mins I live much more peacefully. You will ge there. lets keep it touch. Just keep on moving. I know it hurs. It hurts me too but every little bit helps.
You sound very low from your situation and it has been on my mind since yesterday. Are you doing better today? I hope so. please do not try to deal with all this alone. CBeth is right there is no use trying to fight with pain everyday. The stress makes it all worse. Someone has to be looking after you. Is there a doctor that will listen?
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