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?View Thread
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.View Thread
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 ? LisaView Thread
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.View Thread
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. LisaView Thread
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.View Thread
Thanks for the repy. It felst wierd to read it 3 years later. So much has hpapened.....Re reading felt somewhat depressing as no much has changed sicnce that post. I am still in pain 24/7 my back and legs, hips and migraines. I have had a few things done. 2 buinion surgeries (aug) and (sept2012 ) as the 5 pins didn't heal the break - there was a bone cysts that had formed. So they re did the whole thing and it meant 6 weeks off my foot again. With boys ages 7 and 4 and a husband I needed a wife to look after everything! I got a nannie and it all went well enough I guess. 4 months later I needed another one that didn't go so well but we all managed. I had to re take surgery and get rid of the bone cyst... That sucked. It was also the first sign that something was going - not everyone forms large cysts like that. My ortho lady it was from taking too much advil. Whatever! In the meantime, I developed a hernia. the docs gave me a cat scan to see my hernia had blood passing in it to get it removed. They saw my lymph nodes around my lungs and ribs were enlarged. in a biopsy they found out I have Sarcpdosis - it is an autoimmue disease that makes the lymph nodes around your organs enlarge and calcify into stones. It can be painful and cause feeling of unwell, tiredness aching, etc. Anyways, they did a bone scan last week to see if it is in my bones. I still struggle everyday but I am teaching 2 hours a day and sort of keeping up with my responsibilities. The meds make me function but I don't want to cope anymore I want to live. Going to the pain clinic never would have investigated to find anything that could be causing all this pain. They just list me as depressed, anxious and that I have a chronic pain symdrome with somatic ongoing symptoms. Thaks that helpful! Not I am glad I am still searching for answers and hopefully something they can fix or at least manage better. Otherwise Ifeel hopeless and we all know what that makes you feel like.
I hope you are doing well. Thanks for reminding me that people care and some people even know what it is like to live with pain. It helps me not feel so isolated and alone. Please keep in touch and I will keep you posted. My family doesn't talk about my issues much. My dad is the only one who is actively involved with me. He is also the one I feel most ashamed around because he is so interested in fixing the problem I feel guilty that I am forever wasting his time and nothing gets better but they keep finding new things wrong. Arghh. It is so frustrating. I love all my family they have stood by me. I just feel judged and talked about by them (probably my porblem). Their heart is in the right place, they just don't know what to do and it is all a bit unbeleivable. They think I would be better if I was off medication and if I didn't swell on things. Easy for them to say. All we can do is keep on smiling and trying to do our best. Thanks again, LisaView Thread
Thank you CTbeth you are right. It is none of their business. No one can really understand unless they know what it feels like. My dilema is that I try and communicate my neurological symptoms like blurry vision, tinnitus, metal taste in my mouth etc that could be related to the Chiari (7mm of my brain in my spinal cord at the base of my neck) and the neurologists say that because of the medication I am on they can't tell whether the symptoms are from my chiari or the meds. It is a catch 22. My family thinks I should stop taking the meds but I know it is because they are worried. I am worried that the pills are just masking pain that could be fixed. Instead they tell me to live with it. I wish somethng could be invented that allowed people to see pain. I would love a biopsy of my leg muscles. there must be some way to see how much pain my legs are in all the time. It is so frustrating. You probably already know. I don't want to take the meds. They don't get me high. They make me functional.....I was thinking of trying something other than oxycontin - maybe medical marijuana....does that help anyone you know. It seems more natural. Long term use of the pills isn't great on your system. I only have one kidney left (they took the left one out when I was 2 years old).. I have 9 congenital abnormalities that have been traumatic findingout about. very strange stuff. like an eptopic uretor that went from my kidney to my cervix instead of my bladder. Long story for a nother time. I am just doing the best I can with all this stuff and everyone wants to pretend like its not happening. ARghh.View Thread
Thank you for this wonderful responce. I too am in unrelenting pain all the time for the last 20 years of which the last 5 have been horrible. I have thought of suicide and live with the stigma of "being doped up" from my family. I am a contibuting member of society and functioning only because I am taking drugs. I worry that I am masking pain that could be fixed but nobody wants to explore anything else. So I appreciate you harsh words. Take care and thanks again. LisaView Thread