Aa
The news I have been avoiding
I have been off work 2 years come April. I had a thriving career, earned my masters degree at home in the interim and am working on my, gulp second masters degree at home. First need to keep my sluggish brain active but also I kept thinking any day my fibromyalgia symptoms would be gone and I could "get on with my life." I am also scheduled to receive my second cervical epidural injection for a protruding disk. ouch
Having been a virtual text pharmacy the last few years I am now taking 5 10/325 norco, 2 1 mg xanax, up to 6 mg of zanaflex as needed. I also have tramadol and flexeril PRN. I take other various meds for depression, asthma, IBS and GERD. These meds keep me sort of functioning except I loose 1-2 days per week due to 24 hours sleep binges that leave me more physically exhausted than before. I have many sleep disorders, including apnea.
At 31 I was making great money, had a wonderful home and was hoping find someone to start a family with. Now at 34, I have lost my home, gained 100 pounds, am facing bankruptcy and am humbly living on a one time stipend from my father. I am still fighting with Social Security for Disability and recently lost my medical insurance.
Everyday my family or friends asks me how I feel as if one day I am going to wake up "normal." Friends and family scowl at the medications I take. As a recovering alcoholic they often insinuate I am taking my meds for reasons other than chronic, constant and sometimes excruciating pain and exhaustion.
So, the news. For nearly 3 years I have been living with the goal I could work through this pain, get off the meds, become pain free and get on with my life. In a very kind way, my pain management medical assistant indicated it would be more reasonable to have the goal of finding the least amount of medication to make me capable of functioning as close to normal as possible, but I will always have pain. I will always be in pain...I knew this somewhere in my heart but had not been ready to hear it.
My pain is not managed right now and I barley function. I am embarrassed to say it is hard to take a shower and have been made to feel embarrassed when I have said it. I fear stronger medications due to my past addiction issues but also fear I will not be able to afford to feed my cat ;) let alone myself soon. One conversation and my dreams have been forever changed. I am trying to understand if I will ever be able to use my education to restart my career, be a mother, be loved. I feel very alone right now. If I cant care for myself how can I do all of these other things? work, relationship, baby?
If anyone has any thoughts or insights or even kind words it would be very appricated. It would be so comforting to know others have faced these....challenges. I have a new plan, as I always do, but in my heart I feel very sad. Thank you for taknig the time to read my feelings and letting me vent.
Michelle
Having been a virtual text pharmacy the last few years I am now taking 5 10/325 norco, 2 1 mg xanax, up to 6 mg of zanaflex as needed. I also have tramadol and flexeril PRN. I take other various meds for depression, asthma, IBS and GERD. These meds keep me sort of functioning except I loose 1-2 days per week due to 24 hours sleep binges that leave me more physically exhausted than before. I have many sleep disorders, including apnea.
At 31 I was making great money, had a wonderful home and was hoping find someone to start a family with. Now at 34, I have lost my home, gained 100 pounds, am facing bankruptcy and am humbly living on a one time stipend from my father. I am still fighting with Social Security for Disability and recently lost my medical insurance.
Everyday my family or friends asks me how I feel as if one day I am going to wake up "normal." Friends and family scowl at the medications I take. As a recovering alcoholic they often insinuate I am taking my meds for reasons other than chronic, constant and sometimes excruciating pain and exhaustion.
So, the news. For nearly 3 years I have been living with the goal I could work through this pain, get off the meds, become pain free and get on with my life. In a very kind way, my pain management medical assistant indicated it would be more reasonable to have the goal of finding the least amount of medication to make me capable of functioning as close to normal as possible, but I will always have pain. I will always be in pain...I knew this somewhere in my heart but had not been ready to hear it.
My pain is not managed right now and I barley function. I am embarrassed to say it is hard to take a shower and have been made to feel embarrassed when I have said it. I fear stronger medications due to my past addiction issues but also fear I will not be able to afford to feed my cat ;) let alone myself soon. One conversation and my dreams have been forever changed. I am trying to understand if I will ever be able to use my education to restart my career, be a mother, be loved. I feel very alone right now. If I cant care for myself how can I do all of these other things? work, relationship, baby?
If anyone has any thoughts or insights or even kind words it would be very appricated. It would be so comforting to know others have faced these....challenges. I have a new plan, as I always do, but in my heart I feel very sad. Thank you for taknig the time to read my feelings and letting me vent.
Michelle
Reading your post brought me such comfort. I want to thank all of you for sharing your thoughts, stories and advice. Tuckamore is right, stay away from this wonderful community too much. I seem to find my way here when I don't know where else to go and I am always blessed with a new outlook! Maybe soon I will assimilate these feeling and realize I could be getting, and giving, this type of support all the time. :-)
I have decided to make my day to day routine much easier. Anything I can streamline or eliminate I am doing it. I found a church I am interested in and have decided I need to find some support and social life outside my home as I am tired (haha) of sitting here alone and have to face the fact I my be here a while longer. I am also going to begin volunteering. I have always worked with children and miss them in my life. I feel volunteering will offer a good gauge on what I am able to "give" per week and if outside employment is an option. I am an artist and am now researching the possibility of starting an online business. AND I need to talk to a doctor about adjusting my meds which are simply not working now. All I have the energy to do is go from the bed, to the couch and back. eek.
Hearing the words, "you will always be in pain" may not have been the worst thing. I was diagnosed some time ago but I think it took until now to swallow that hard pill and face the facts. There is something to be said for finally finding the courage to face the facts. It seems to giving me permission to let go of the fantasy I have been holding on to for so long. I feel ready to adjust my dreams, goals, and ambition based on what my capabilities are. Wow, I sound really together. It was, however a good day. I am so much more thankful for the good days, the days I used to take for granted.
I wish you all peace, love and NO pain.
Michelle
I have decided to make my day to day routine much easier. Anything I can streamline or eliminate I am doing it. I found a church I am interested in and have decided I need to find some support and social life outside my home as I am tired (haha) of sitting here alone and have to face the fact I my be here a while longer. I am also going to begin volunteering. I have always worked with children and miss them in my life. I feel volunteering will offer a good gauge on what I am able to "give" per week and if outside employment is an option. I am an artist and am now researching the possibility of starting an online business. AND I need to talk to a doctor about adjusting my meds which are simply not working now. All I have the energy to do is go from the bed, to the couch and back. eek.
Hearing the words, "you will always be in pain" may not have been the worst thing. I was diagnosed some time ago but I think it took until now to swallow that hard pill and face the facts. There is something to be said for finally finding the courage to face the facts. It seems to giving me permission to let go of the fantasy I have been holding on to for so long. I feel ready to adjust my dreams, goals, and ambition based on what my capabilities are. Wow, I sound really together. It was, however a good day. I am so much more thankful for the good days, the days I used to take for granted.
I wish you all peace, love and NO pain.
Michelle
Reading your story really touched my heart and I really relate to it on so many levels. There are many good people on MH who also understand and have gone through what you have gone through.
It actually almost brought me to tears when I read it out of sadness for you and at the similarities in my own life. I know what I need to do but just cannot make myslef do it(quit work). It's almost as if it's the LAST thing I have any kind of control of and brings me some kind of happiness and satisfaction out of life.
You really sound like a bright young who has a lot going for herself, sometimes it's hard to see things that way and I know that from experience. Perhaps you can use your degrees at some point in some kind of home telecommuting capacity for a company? MANY companies out there are willing to do this and it may be avenuefor you to consider.
As for the meds, yes I too suffer the stigma and judgements of the un-educated when it comes to meds and our need for them 'just to function in life'. I take 100mcg Fentanyl patch every 48-72hrs and 10/325mg Percocet twice daily. I also have secondary depression caused by the CP.
I agree that people make judgements about us because we look and appear so perfectly normal, I hear it all the time. Sadly, it's often times the ones who are meant to love and support us the most that we get the least amount of support from.
I would also suggest you joing the chronic pain couch forum, there is also more support and advice there and also a place to communicate and vent if and when needed.
I wish you the best, please keep us updated on how you are doing.
-Brian.
It actually almost brought me to tears when I read it out of sadness for you and at the similarities in my own life. I know what I need to do but just cannot make myslef do it(quit work). It's almost as if it's the LAST thing I have any kind of control of and brings me some kind of happiness and satisfaction out of life.
You really sound like a bright young who has a lot going for herself, sometimes it's hard to see things that way and I know that from experience. Perhaps you can use your degrees at some point in some kind of home telecommuting capacity for a company? MANY companies out there are willing to do this and it may be avenuefor you to consider.
As for the meds, yes I too suffer the stigma and judgements of the un-educated when it comes to meds and our need for them 'just to function in life'. I take 100mcg Fentanyl patch every 48-72hrs and 10/325mg Percocet twice daily. I also have secondary depression caused by the CP.
I agree that people make judgements about us because we look and appear so perfectly normal, I hear it all the time. Sadly, it's often times the ones who are meant to love and support us the most that we get the least amount of support from.
I would also suggest you joing the chronic pain couch forum, there is also more support and advice there and also a place to communicate and vent if and when needed.
I wish you the best, please keep us updated on how you are doing.
-Brian.
You are not alone. I am a recovering alcoholic. I suffer daily with chronic pain. I have had 7 surgeries on my spine and I have fibromyalgia. I was 205 pounds and didn't weigh that when I gave birth to my 2 kids. I was on such strong pain medication, fentanyl patch, vicodin, anti-depressants, you name it. And you know what I HATED (a word I don't use) every 2nd of it. So I stopped all of it.
I too had an amazing career. I traveled for work, I worked with scientists, leading biotech and pharmaceutical companies. I was making close to $100,000.00 per year. I had to leave that, my pain was so bad I just couldn't take it any more. I stopped drinking over 10 years ago, it was making me so ill and so unhappy. I was basically self medicating. Then I went through 5 cervical and lumbar surgeries in 2 years and my mother died. It was awful. My physical pain was so bad and all I could do was sleep and cry. I dreamed of how life could be. I would look at my kids and my husband and see it all slipping away. I felt so bad about it all. Little by little I made small changes. I talked to my doctor. I told him I wanted more quality of life. I researched medications. I got off that strong pain patch. I was moved on to oxycontin, yes a very strong medication but not a high dose. 40 mg per day. It didn't trigger any other addictions. It doesn't cover all of my pain but you know what I don't sleep all day, I joined a gym. I went once a week, would get in the pool for 5 minutes only. Then gradually I got stronger. 7 months later I am up to 3-4 times per week 40 minutes in the pool (walking only) 15 minutes in the sauna. I lost 25 pounds to date. I feel like a new person. My pain is definitely still there and for the rest of my life and I have finally accepted it I will have pain but I will live my life, confident, aging with better health than I thought was possible. I take supplements and get B12 shots monthly. I drink 98 ounces of water daily. All of this lessens my need for a lot of medication.
What I realized was the strong medications and too much of it I was taking, I agreed to put in my body not only because I was in physical pain but because I had so much emotional pain. As recovering alcoholics we have tried hard to bury our pain. Once you let yourself feel the pain you will possibly let yourself let go of some of the medication and start moving.
You sound so intelligent and I envy your 2 MASTERS DEGREES, do you know how amazing that is!!!!!!!!!!!! Please use them. Use the intelligence and beauty in you to move through your life. Only you can make these changes.
I can guarantee if I can do it anyone can.
I suffered with so much sadness and depression and loss throughout my life. Then there was the physical pain. It's unbearable some days. But on those good days life is good when we are fit, eating right and not overly tired from medication and too weak to move.
And you do need to have your pain managed. Make a strong commitment to stay sober. If you feel pain medication even in the right dose would be hard for you, set up checks and balances for yourself perhaps even someone who administers your meds. But taking what you are taking sounds like your still in pain, your over medicated and it's just not working for you based on what you posted.
I would also look in to B12 either shots or supplements, Iodine supplements-research side effects based on your health issues, Vitamin D2000 asap, and start drinking water asap. This will really help.
Also eliminate slowly simple sugars, white bread, white potatoes, white rice. These all make pain worse and weight.
Everything in moderation. Take some time to think this through and all the great posts, read it all, give it some thought. Make small changes slowly. But start somewhere. I would start by talking to my doctor about changing medications.
All the best and please keep in touch.
I too had an amazing career. I traveled for work, I worked with scientists, leading biotech and pharmaceutical companies. I was making close to $100,000.00 per year. I had to leave that, my pain was so bad I just couldn't take it any more. I stopped drinking over 10 years ago, it was making me so ill and so unhappy. I was basically self medicating. Then I went through 5 cervical and lumbar surgeries in 2 years and my mother died. It was awful. My physical pain was so bad and all I could do was sleep and cry. I dreamed of how life could be. I would look at my kids and my husband and see it all slipping away. I felt so bad about it all. Little by little I made small changes. I talked to my doctor. I told him I wanted more quality of life. I researched medications. I got off that strong pain patch. I was moved on to oxycontin, yes a very strong medication but not a high dose. 40 mg per day. It didn't trigger any other addictions. It doesn't cover all of my pain but you know what I don't sleep all day, I joined a gym. I went once a week, would get in the pool for 5 minutes only. Then gradually I got stronger. 7 months later I am up to 3-4 times per week 40 minutes in the pool (walking only) 15 minutes in the sauna. I lost 25 pounds to date. I feel like a new person. My pain is definitely still there and for the rest of my life and I have finally accepted it I will have pain but I will live my life, confident, aging with better health than I thought was possible. I take supplements and get B12 shots monthly. I drink 98 ounces of water daily. All of this lessens my need for a lot of medication.
What I realized was the strong medications and too much of it I was taking, I agreed to put in my body not only because I was in physical pain but because I had so much emotional pain. As recovering alcoholics we have tried hard to bury our pain. Once you let yourself feel the pain you will possibly let yourself let go of some of the medication and start moving.
You sound so intelligent and I envy your 2 MASTERS DEGREES, do you know how amazing that is!!!!!!!!!!!! Please use them. Use the intelligence and beauty in you to move through your life. Only you can make these changes.
I can guarantee if I can do it anyone can.
I suffered with so much sadness and depression and loss throughout my life. Then there was the physical pain. It's unbearable some days. But on those good days life is good when we are fit, eating right and not overly tired from medication and too weak to move.
And you do need to have your pain managed. Make a strong commitment to stay sober. If you feel pain medication even in the right dose would be hard for you, set up checks and balances for yourself perhaps even someone who administers your meds. But taking what you are taking sounds like your still in pain, your over medicated and it's just not working for you based on what you posted.
I would also look in to B12 either shots or supplements, Iodine supplements-research side effects based on your health issues, Vitamin D2000 asap, and start drinking water asap. This will really help.
Also eliminate slowly simple sugars, white bread, white potatoes, white rice. These all make pain worse and weight.
Everything in moderation. Take some time to think this through and all the great posts, read it all, give it some thought. Make small changes slowly. But start somewhere. I would start by talking to my doctor about changing medications.
All the best and please keep in touch.
If you are in pain you need your pain treated, addict or not. It ***** that some people think (even doctors included!) that we are just trying to get high from our medication. Havng unmanaged pain will make other areas of your life more miserable than it needs to be. Your first priority should be to get your pain under control. I know how you feel. I was only 26 when my back problems started. At the time I owned my home outright (mortgage paid off), had a great career going, and was happily married. After my surgeries, I lost my home, my job, but luckily am still happily married. I also fought with SSI for over a year anda half. I did finally win that battle, and highly recommend a lawyer to help you (they make $5000 maximum from each case they take, an only if you win). I understand the need to communicate with someone that understands your situation. You can email me anytime you need someone to talk to. Everything will get better in time, just keep up the fight, and please get your pain under control asap.
Your comments always offer such comfort. Thank you. I find I only seem to post when things at very low. I need to make an effort to stay connected and I will :)
Funny you use the word "adjust." I read the most wonderful essay?, blog? about adjusting. I have a list started of things I can adjust to make day to day life easier. Thank you, once again for your kind words. On this crazy path I have always been able to count on your support and I appreciate it more than you know!!
Funny you use the word "adjust." I read the most wonderful essay?, blog? about adjusting. I have a list started of things I can adjust to make day to day life easier. Thank you, once again for your kind words. On this crazy path I have always been able to count on your support and I appreciate it more than you know!!
Hi Michelle,
Welcome back. It's been awhile since we have heard from you.
I remember the day that I was told, this is as good as it gets. It knocked me on my hiney. Shock and disbelief and an unwillingness to accept to truth was tough. I know what you are experiencing.
There is life after those words..and there is life with chronic pain. Look for another path. Build more realistic goals. Never say never. You hold the answers to your future in your hands.
You may not birth a child but there are many children out there that would love your attention. Maybe that would mean volunteering at a Children's Hospital in the future. Only you can set those goals and know what's best for you.
Physician's don't always know the future. I was told my father would not make it till Christmas. He is still with me and better than two months ago. My best friend's sister had lung cancer. She was given 9-12 months to live two years ago. Today they can find no cancer in her body.
Don't let someone else tell you what your future will be. Yes to a degree they hold some truth and knowledge but they have no crystal ball. So set your priorities and your goals reachable. Don't give up. Make short term goals and work towards them. You can adjust as you go and as you need to. Your life is not over nor are your dreams.
Hang in there. Come visit with us more often. Our members are wonderfully supportive and offer great suggestions and information. I will be wishing you the very best and looking forward to hearing form you.
Peace,
Tuck
Welcome back. It's been awhile since we have heard from you.
I remember the day that I was told, this is as good as it gets. It knocked me on my hiney. Shock and disbelief and an unwillingness to accept to truth was tough. I know what you are experiencing.
There is life after those words..and there is life with chronic pain. Look for another path. Build more realistic goals. Never say never. You hold the answers to your future in your hands.
You may not birth a child but there are many children out there that would love your attention. Maybe that would mean volunteering at a Children's Hospital in the future. Only you can set those goals and know what's best for you.
Physician's don't always know the future. I was told my father would not make it till Christmas. He is still with me and better than two months ago. My best friend's sister had lung cancer. She was given 9-12 months to live two years ago. Today they can find no cancer in her body.
Don't let someone else tell you what your future will be. Yes to a degree they hold some truth and knowledge but they have no crystal ball. So set your priorities and your goals reachable. Don't give up. Make short term goals and work towards them. You can adjust as you go and as you need to. Your life is not over nor are your dreams.
Hang in there. Come visit with us more often. Our members are wonderfully supportive and offer great suggestions and information. I will be wishing you the very best and looking forward to hearing form you.
Peace,
Tuck
Have an Answer?
You are reading content posted in the Pain Management Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
Could it be something you ate? Lack of sleep? Here are 11 migraine triggers to look out for.
Find out if PRP therapy right for you.
Tips for preventing one of the most common types of knee injury.
Here are 10 ways to stop headaches before they start.
Tips and moves to ease backaches
