Aa
HELP!
I am 38 years old and in major need of help! I have had pain since 2005. It started with left foot pain, suddenly one day at work. I had not done anything to my foot. It continued for 6 months before I went to the doctor and steadily getting worse. I went to an Ortho foot surgeon. They did a cortisone shot, sent me to therapy and put me in a brace. Nothing seemed to help my foot. Within a year, I started to have lower back pain. Each area was steadily getting worse. I went to an Ortho back surgeon who sent me to therapy for my back which did not help. They suggested a spine fusion. I have seen 2 ortho surgeons for my back and both have stated to do a spine fusion, which I do not want. I have had 3 MRI's done and 1 x-ray. I was diagnosed with DDD, bulging disc, Spondy and pars defect. I have currently seen a Neuro surgeon who first said a spine fusion and now has changed his mind. He has told me to continue doing what I am doing. Both issues have continued for almost 5 years now with no relief. For my back pain, I have been to Chiropractors, Rheumotologist, Thai Massage Therapy, 3 different physical therapy places, Neuro Surgeon, 2 Ortho Surgeons and 6 pain management doctors. The Ortho foot surgeon ended up doing an MRI last summer on my foot and discovered a torn pearonal tendon with subluxation. I had this repaired 7/29/09. I am still having pain in my left foot. I had another MRI in December that showed edema and a possible stress fracture starting. Now, pain has started in my right foot in the past two months. Most of my joints hurt, I feel bruised all over my body, my thoracic area has pain now, lower back pain runs into the buttocks and down the left leg to the knee. I have been on numerous medications of all kinds and nothing is helping me. I have had 2 years worth of steriod injections which have caused my hormones to go haywire on my adrenal gland. Only one transformanial injection helped 11/08 for 4 months. I work for a pain management practice and they can't even fix me. I am getting really depressed, fustrated, and tired of going from doctor to doctor and medication to medication. I am not sure how much more I can handle. It has started to effect my job but I will not go on disability for the rest of my life. I tried to start exercising at a gym and the pain got so bad, I haven't been back. I get off work and come straight home to lay in bed the rest of the night. That is my life. I can not sit, stand or walk for long periods of time. I can not figure out what to do or why I feel bruised all over my body. My finger, wrist, shoulder, knee, toes, and ankle joints all hurt and are stiff. I can barely walk when I get up in the mornings. I have custom orthotics in my shoes I wear everyday, along with heel lifts. I am currently taking many vitamins and some medications. I had a dexascan done and it was negative. I had lab work done for arthritis and it was negative. I had lab work for hormones and they are out of control. I had a cort stime test done and it was not where the doctor would like to see it. He said my adrenal gland is partially shut down from all the steriod injections. He started me on a daily dose of prednisone. I am scheduled for an EMG in a few weeks. I am not a drinker. I quit smoking 2 1/2 years ago. I have put on 30-40 lbs in the past 2 years. I was retaining a lot of fluid for a while. I can't be active but I barely eat. The pain gets so bad, I am not even hungry. The extra weight is not helping the back, foot or depression. I can't seem to lose any of it even without eating. I have had carpal tunnel surgery, right thumb surgery due to my thumb joints being to "lose". I was to get the left one done but never did because the right one still hurts. The pain runs up my arms. My fingers were so swollen that I couldn't get some of my rings on or my watch on. With all this said................does ANYONE have any other ideas I have not tried or thought about? I have done everything the doctors have suggested I do or asked me to do. I have went to every kind of doctor I can think of without leaving my city and going out of network. I am in total medical debt but I need answers because I can not continue life like this. I am WAY too young. I have never had an accident, broke a bone or had any injuries when I was younger. If someone could PLEASE give me some ideas or suggestions, I would welcome any. My family really wants to help me but no one knows what to do for me. Thank you
I am so sorry for your pain and struggle. How frustrating it must be to work in a pain clinic and get no help!!
I think it's hard to find good doctors. I'm really fortunate in every doctor I have, but I am also very picky in how I pick them. I've had my share of bad doctors, both for myself, my parents and my kids years ago, and now I investigate who I go to, and if I am not happy, I go elsewhere. Not everyone has that luxury, but I happen to live in an area that I have access to great medical care.
I've heard (long ago) about fibromyalgia being a "garbage diagnosis." I was diagnosed about ten years ago. I went through a stage wondering if it was a "catch all," and maybe it is for some doctors. But it is a very real illness and it can be hard to treat. Mine seems to be okay for the last few years, a flare-up here or there but nothing like I experienced in the beginning.
Personally, though I'm like everyone else and I search for an end to my pain and want a real and accurate diagnosis, I think that sometimes there are conditions and patients that somehow fall into an obscure area. For one, I think there are new illnesses cropping up all the time and it can take years before it's identified and then maybe more years before it's accepted. Examples would be Lyme disease, fibromyalgia, AIDS, etc.
It could be that you have many things going on, and that's what it sounds like to me. It will be really difficult for any doctor to figure out which of your symptoms are related to what condition. Just for an example, maybe some of your symptoms are from fibromyalgia or something similar, maybe other symptoms are from arthritis, maybe some come from the injections. What I'm saying is, like Tuck, you need to find someone to take a really close look at your records and investigate it from the beginning and scrutinize it. Try to put things in order and sort things out.
Maybe some big research hospital or clinic or even the CDC. I think you need to start looking outside the norm of what most people look to.
Even though I have fantastic doctors from my PCP, surgeon, pain clinic team, and others, I am still looking to find the right combination of things to treat my pain. I've been on worker's comp for 3 years now, and it is really hard to make ends meet. Especially since I'm a single mom of 4 with no child support. Some days the finances really get me down. But there came a point that I couldn't do my job the way it needed to be done. As much as I hate my financial condition, I know there is no way I can get back to work now. And from the looks of it, I'm going to have to apply for an early disability retirement, which is offered to state employees.
Best of luck. (Oh, one thing I don't think I saw mentioned here but has been mentioned on other forums is a pain psychiatrist. Have you seen one of them? I'm in the process of waiting for them to negotiate the rate, but I can't wait to see him. I'm hoping he'll help lead me to some alternative and homeopathic type treatments (like acupuncture, massage, etc.) to try in addition to the traditional medicine route I'm going. That may be another avenue to look to where you may get some good suggestions.
I think it's hard to find good doctors. I'm really fortunate in every doctor I have, but I am also very picky in how I pick them. I've had my share of bad doctors, both for myself, my parents and my kids years ago, and now I investigate who I go to, and if I am not happy, I go elsewhere. Not everyone has that luxury, but I happen to live in an area that I have access to great medical care.
I've heard (long ago) about fibromyalgia being a "garbage diagnosis." I was diagnosed about ten years ago. I went through a stage wondering if it was a "catch all," and maybe it is for some doctors. But it is a very real illness and it can be hard to treat. Mine seems to be okay for the last few years, a flare-up here or there but nothing like I experienced in the beginning.
Personally, though I'm like everyone else and I search for an end to my pain and want a real and accurate diagnosis, I think that sometimes there are conditions and patients that somehow fall into an obscure area. For one, I think there are new illnesses cropping up all the time and it can take years before it's identified and then maybe more years before it's accepted. Examples would be Lyme disease, fibromyalgia, AIDS, etc.
It could be that you have many things going on, and that's what it sounds like to me. It will be really difficult for any doctor to figure out which of your symptoms are related to what condition. Just for an example, maybe some of your symptoms are from fibromyalgia or something similar, maybe other symptoms are from arthritis, maybe some come from the injections. What I'm saying is, like Tuck, you need to find someone to take a really close look at your records and investigate it from the beginning and scrutinize it. Try to put things in order and sort things out.
Maybe some big research hospital or clinic or even the CDC. I think you need to start looking outside the norm of what most people look to.
Even though I have fantastic doctors from my PCP, surgeon, pain clinic team, and others, I am still looking to find the right combination of things to treat my pain. I've been on worker's comp for 3 years now, and it is really hard to make ends meet. Especially since I'm a single mom of 4 with no child support. Some days the finances really get me down. But there came a point that I couldn't do my job the way it needed to be done. As much as I hate my financial condition, I know there is no way I can get back to work now. And from the looks of it, I'm going to have to apply for an early disability retirement, which is offered to state employees.
Best of luck. (Oh, one thing I don't think I saw mentioned here but has been mentioned on other forums is a pain psychiatrist. Have you seen one of them? I'm in the process of waiting for them to negotiate the rate, but I can't wait to see him. I'm hoping he'll help lead me to some alternative and homeopathic type treatments (like acupuncture, massage, etc.) to try in addition to the traditional medicine route I'm going. That may be another avenue to look to where you may get some good suggestions.
Your story mimics mine almost exactly. No one seems to understand the reality of the pain and the frustration of KNOWING your docs are making money off you & have no real interest in finding the cause; they seem to be simply interested in money from pharmaceuticals. These people have actually made me hope there is a hell, because lord knows, they've been letting us live in it for money. I am also going on 5 years with no treatments but meds & shots - shots that never work, but am continually told to undergo again. Hhhmm?? I am also currently looking out-of-network for a clinic that has diagnostics as well as possible help. I don't know how expensive this will be; I can only imagine, and can only afford to get it right the first time. Last night I was in so much pain (thoracic) I was actually thinking about suicide. All that happened was I sent my wonderful, caring, loving, understanding husband (at least I got lucky there) off to his graveyard shift scared and in tears. That made me feel as guilty as the fact that this poor man has to do absolutely everything for me. I hope our search ends successfully. I wish you the best, and if I stumble upon a miracle, I will certainly share. Please feel free to do the same! I hope you find relief soon.
Rachele
Rachele
I appreciate your response and concern. Even if I get diagnosed with Fibro, there is really no cure for it. Correct? Is it not.....a catch all diagnose when the doctors don't know what else to call your issues? \
I am going to work on getting a referral to the Cleveland Clinic in Ohio. I have heard good things about them. I am just not sure what type of doc I am looking for. Do I need a Orthopedic, Rheumotologist, Neuro, Pain Management, Internist, etc....? I believe I have several issues going on and they would be addressed by different doctors. That makes things hard for them all to work together for answers. If I am going to travel to Cleveland and get a 1 time authorization from my insurance carrier to pay it as in network, I want to make it count and pick the right doc.
I am very familiar with the other opiates, long acting pain patches or the "Big Dogs". Since I work in a pain management practice, I hear about all of them. No doctor (not even my employer) has suggested any of the higher meds. But, if I couldn't even handle the Nuycenta and it made me high......there is no way I would be able to do the other big opiates. I do not like being under the influence of meds or feeling like I don't have control. Christmas Eve, I had to finish up my xmas shopping and I was in so much pain. I had taken 4-5 vicodins throughout the day, just to get me buy. They were not even cutting the pain. I had to meet my family for dinner and Christmas Even service, so I knew I was going to be sitting for awhile and I was already in pain. So, I took a percocet before I left the house for dinner. (even though it makes me itch but I didn't want to be in pain) At the restaurant, my sister was very concerned about me and thought she was going to have to take me to the ER. I was totally out of it, itching all over my body and I couldn't even talk to the waiter to order. I kept slurring and getting tongue tied. My sister said, if I would have been pulled over that night for anything.......I would have went to jail for being under the influence. But, the meds still didn't help because I sat through church with tears running down my face due to the pain and fustration. I don't want to take those big meds because my body can not handle them. I need to be able to function, speak, go to work, drive, concentrate, and be a leader in my position. I do NOT want to become addicted or dependant on any of those big meds.
I felt, since my foot pain started first......then that helped create my back issues and problems or speeded up issues that might have been starting. The longer I left the foot issue go with trying "conservative" measures, the worse it got. Then my knee started giving out, my leg started to become weaker and the back started. At one of my breaking points last year.....I finally decided to start from the beginning and go back to what started first. I thought, if I fixed my foot, then I wouldn't be walking different and throwing my back off anymore. Then, maybe my back would get better. Boy, was I wrong. Things have not went as planned. With foot surgery, beging in a boot and being non-weight bearing with a knee cart......it definitely through off my back even more and cause some pain issues. I have had 24 sessions of therapy since surgery to work on my back and foot (gait). It only made my foot worse and swell up. That is why the recent MRI and all the repeat visits to the foot surgeon 6 months later. I can not afford to go to therapy anymore and had to stop. They have me in a blood clot stocking and a ankle brace temporarily. What is a DO? They can help with my foot and gait? Because of the gait issues......it is causing pain in my other foot now. I can barely walk when I get out of bed in the morning. I have to wear tennis shoes every day of my life, with my heal lifts and custom orthotics. I have tried other shoes for special occassions and within 20 minutes, my feet are killing me.
My place of employment is for a whole nother forum! Lol! We have went through a few doctors. One of the new, young and fresh out of school ones took over my care last year. He has the "God" complex, cocky and it is his way or no way. Steriod injections are there money makers. He just wants to keep injecting me and throwing scripts at me everytime I see him. He did not like me going to a Neuro Surgeon for another opinion, he did not like me stopping physical therapy (it was his friend), he did not like my foot surgeon requesting an emg and nerve conduction study (he felt, if I needed one, he would have done it already). Without going into more detail......as of last week, my place of employment will NO longer see employees and there family members. So, I am sent on my way to find a new doctor with no prescription refills and on these meds that have me mentally out of control. But, they are not concerned about it. If, I don't get myself physically and mentally under control......I will be without a job, which I can't afford. I need my medical insurance. I am not sure how long ago you were in the medical field. Are you a nurse or what was your occupation? In my area, I have not found many physcians that really take the time or care once you walk out that door. My whole family has found this with many area doctors these days. It is all about "the mighty dollar".
I would not be able to live on SSID. My neighbor is on it and she struggles every day to make ends meet. I do not want to live like that.
I just want answers and no one is giving me any. With my back issues, I am told by many people in the medical field, that a lot of people have those same issues but don't have pain. Why am I having pain then? Why does my whole body hurt, ache and feel bruised all the time. No one around me understands how I feel or what I am talking about. They think I am just blowing smoke or being a baby. If I have dealt with this for 5 years.......I have been pretty strong about dealing with the pain until now. I just can't do it anymore. I won't live like this forever. This is no kind of life for anyone. I am single, no kids, trapped in my house with no life. I want kids but how could I with the pain? I want to be married and go on dates but who wants a person who is in pain all the time and no fun to be around? I would be boring for many people. I have always been very independent and never relied on anyone for help. Now, I can't shovel my snow, mow my yard, etc..... My parents who are in there 70's have to come and shovel for me, while I am 38 and standing there watching. That is not a good feeling and it should not be that way.
Some days are worse than others. Rainy days or if a front is coming in......I seem to get really bad. I haven't tracked this completely but it is appearing that way. The past 3 days have been really bad. I feel so disabled and handicapped. I don't want to end up in a wheelchair or walking with a cane. I wanted to go back to school to be a Paramedic but that is out of the question. I wouldn't even be able to lift anyone. I have started a class to become a certified medical coder but I have difficulties sitting there for 3 hours. I take my pain meds before class and then I am a mess. I drop my books all over the place, I can't comprehend the number the teacher keeps saying and I have to keep asking my neighbor "what did she way".
My goals for now......I want answers on what is causing all of my pain, how to "fix" it and not put a bandaid on it, how to function until it is fixed and how to cope with the pain without getting frustrated and crying all the time..........or I will be filing for unemployment with no medical insurance. This extra burden and stress does not help the matter.
Any other suggestion you might have are welcomed. Any suggestions on what kind of doc to see would be great.
I am going to work on getting a referral to the Cleveland Clinic in Ohio. I have heard good things about them. I am just not sure what type of doc I am looking for. Do I need a Orthopedic, Rheumotologist, Neuro, Pain Management, Internist, etc....? I believe I have several issues going on and they would be addressed by different doctors. That makes things hard for them all to work together for answers. If I am going to travel to Cleveland and get a 1 time authorization from my insurance carrier to pay it as in network, I want to make it count and pick the right doc.
I am very familiar with the other opiates, long acting pain patches or the "Big Dogs". Since I work in a pain management practice, I hear about all of them. No doctor (not even my employer) has suggested any of the higher meds. But, if I couldn't even handle the Nuycenta and it made me high......there is no way I would be able to do the other big opiates. I do not like being under the influence of meds or feeling like I don't have control. Christmas Eve, I had to finish up my xmas shopping and I was in so much pain. I had taken 4-5 vicodins throughout the day, just to get me buy. They were not even cutting the pain. I had to meet my family for dinner and Christmas Even service, so I knew I was going to be sitting for awhile and I was already in pain. So, I took a percocet before I left the house for dinner. (even though it makes me itch but I didn't want to be in pain) At the restaurant, my sister was very concerned about me and thought she was going to have to take me to the ER. I was totally out of it, itching all over my body and I couldn't even talk to the waiter to order. I kept slurring and getting tongue tied. My sister said, if I would have been pulled over that night for anything.......I would have went to jail for being under the influence. But, the meds still didn't help because I sat through church with tears running down my face due to the pain and fustration. I don't want to take those big meds because my body can not handle them. I need to be able to function, speak, go to work, drive, concentrate, and be a leader in my position. I do NOT want to become addicted or dependant on any of those big meds.
I felt, since my foot pain started first......then that helped create my back issues and problems or speeded up issues that might have been starting. The longer I left the foot issue go with trying "conservative" measures, the worse it got. Then my knee started giving out, my leg started to become weaker and the back started. At one of my breaking points last year.....I finally decided to start from the beginning and go back to what started first. I thought, if I fixed my foot, then I wouldn't be walking different and throwing my back off anymore. Then, maybe my back would get better. Boy, was I wrong. Things have not went as planned. With foot surgery, beging in a boot and being non-weight bearing with a knee cart......it definitely through off my back even more and cause some pain issues. I have had 24 sessions of therapy since surgery to work on my back and foot (gait). It only made my foot worse and swell up. That is why the recent MRI and all the repeat visits to the foot surgeon 6 months later. I can not afford to go to therapy anymore and had to stop. They have me in a blood clot stocking and a ankle brace temporarily. What is a DO? They can help with my foot and gait? Because of the gait issues......it is causing pain in my other foot now. I can barely walk when I get out of bed in the morning. I have to wear tennis shoes every day of my life, with my heal lifts and custom orthotics. I have tried other shoes for special occassions and within 20 minutes, my feet are killing me.
My place of employment is for a whole nother forum! Lol! We have went through a few doctors. One of the new, young and fresh out of school ones took over my care last year. He has the "God" complex, cocky and it is his way or no way. Steriod injections are there money makers. He just wants to keep injecting me and throwing scripts at me everytime I see him. He did not like me going to a Neuro Surgeon for another opinion, he did not like me stopping physical therapy (it was his friend), he did not like my foot surgeon requesting an emg and nerve conduction study (he felt, if I needed one, he would have done it already). Without going into more detail......as of last week, my place of employment will NO longer see employees and there family members. So, I am sent on my way to find a new doctor with no prescription refills and on these meds that have me mentally out of control. But, they are not concerned about it. If, I don't get myself physically and mentally under control......I will be without a job, which I can't afford. I need my medical insurance. I am not sure how long ago you were in the medical field. Are you a nurse or what was your occupation? In my area, I have not found many physcians that really take the time or care once you walk out that door. My whole family has found this with many area doctors these days. It is all about "the mighty dollar".
I would not be able to live on SSID. My neighbor is on it and she struggles every day to make ends meet. I do not want to live like that.
I just want answers and no one is giving me any. With my back issues, I am told by many people in the medical field, that a lot of people have those same issues but don't have pain. Why am I having pain then? Why does my whole body hurt, ache and feel bruised all the time. No one around me understands how I feel or what I am talking about. They think I am just blowing smoke or being a baby. If I have dealt with this for 5 years.......I have been pretty strong about dealing with the pain until now. I just can't do it anymore. I won't live like this forever. This is no kind of life for anyone. I am single, no kids, trapped in my house with no life. I want kids but how could I with the pain? I want to be married and go on dates but who wants a person who is in pain all the time and no fun to be around? I would be boring for many people. I have always been very independent and never relied on anyone for help. Now, I can't shovel my snow, mow my yard, etc..... My parents who are in there 70's have to come and shovel for me, while I am 38 and standing there watching. That is not a good feeling and it should not be that way.
Some days are worse than others. Rainy days or if a front is coming in......I seem to get really bad. I haven't tracked this completely but it is appearing that way. The past 3 days have been really bad. I feel so disabled and handicapped. I don't want to end up in a wheelchair or walking with a cane. I wanted to go back to school to be a Paramedic but that is out of the question. I wouldn't even be able to lift anyone. I have started a class to become a certified medical coder but I have difficulties sitting there for 3 hours. I take my pain meds before class and then I am a mess. I drop my books all over the place, I can't comprehend the number the teacher keeps saying and I have to keep asking my neighbor "what did she way".
My goals for now......I want answers on what is causing all of my pain, how to "fix" it and not put a bandaid on it, how to function until it is fixed and how to cope with the pain without getting frustrated and crying all the time..........or I will be filing for unemployment with no medical insurance. This extra burden and stress does not help the matter.
Any other suggestion you might have are welcomed. Any suggestions on what kind of doc to see would be great.
Find a physician that is ale to determine if you have Fibro or not. Keep looking there are physicians out there that care.
It took me years to find a compassionate, astute, caring physician. She is a D.O. and without her diagnosis and help I would not be there. As I suggested get to a major national clinic. No one should have to live with the pain that you do.
I've reviewed your list on meds. I am simply not comfortable recommending medications. However there are other long acting opiates and "Big Dog." meds that could be effective in ease your pain. You may likely benefit from some med changes. Most PM patients find it is a long trial and error process to find the right combination of medications that effectively control their pain.
My gait has also changed and I have developed complications due to that change. As I said I see a DO that helps with my alignment and gait issues. PT has never been successful at reducing pain in the majority of the originating sites.
Are there no physicians at your place of employment that have taken an interest in your condition? When I was active in the medical community there were physicians that cared about their staff and health.
No one wants to go on SSDI. At least I sure didn't. Like you, it was my last resort. And for me there were simple no more options. Pain made it impossible for me to continue my career. When the time comes don't be afraid to apply for SSDI. There is no shame in it. All the meds in the world could not control my pain enough to allow me to continue employment.
Again I encourage you to seek other medical opinions. Ask physicians how they can help you to continue employment. With the kind of pain you experience on a daily basis with no relief I don't know how long you can continue to work. But obviously it is your call.
Keep searching and please don't give up. Many of us can attest to the fact that our search was long...but worth it in the end.
It took me years to find a compassionate, astute, caring physician. She is a D.O. and without her diagnosis and help I would not be there. As I suggested get to a major national clinic. No one should have to live with the pain that you do.
I've reviewed your list on meds. I am simply not comfortable recommending medications. However there are other long acting opiates and "Big Dog." meds that could be effective in ease your pain. You may likely benefit from some med changes. Most PM patients find it is a long trial and error process to find the right combination of medications that effectively control their pain.
My gait has also changed and I have developed complications due to that change. As I said I see a DO that helps with my alignment and gait issues. PT has never been successful at reducing pain in the majority of the originating sites.
Are there no physicians at your place of employment that have taken an interest in your condition? When I was active in the medical community there were physicians that cared about their staff and health.
No one wants to go on SSDI. At least I sure didn't. Like you, it was my last resort. And for me there were simple no more options. Pain made it impossible for me to continue my career. When the time comes don't be afraid to apply for SSDI. There is no shame in it. All the meds in the world could not control my pain enough to allow me to continue employment.
Again I encourage you to seek other medical opinions. Ask physicians how they can help you to continue employment. With the kind of pain you experience on a daily basis with no relief I don't know how long you can continue to work. But obviously it is your call.
Keep searching and please don't give up. Many of us can attest to the fact that our search was long...but worth it in the end.
Please see the list above of all the meds I am currently on, have tried or have scripts I won't fill. Any suggestions?
A Rheumotologist did a trigger point test on me and I was positive for 11, I believe but he said he wasn't looking for Fibro and couldn't dx it. That was not his expertise. I had all kinds of immune deficiancy tests ran back then also. Nothing was found. My stress fracture in the foot, was before I started the prednisone. They believe it is from not walking correctly due to the pain. I most certainly have ALL of my medical records. I have them from my current job and my nurse friend at work requested them from all of my other providers from the past. I have a huge stack. I take them to every new doc I go to but no one will take the time to go through them and put the puzzle together. I have had SI flare ups and had them injected a few times, which only last for 3 weeks. My family has learned throughout the years with grandparents and a brother-n-law who passed from pancreatic cancer.....you MUST be your own detective and advocate. You have a right as a patient to refuse anything you don't feel is right or beneficial. Doctors don't like that and tend to not want to deal with you. Very rarely, will you find a kind souled doc these days, who will actually take the time to help you find answers or go the extra mile. None of my docs have ever advised me against working. I have been to the point where I am on my knees at my desk and trying to type or standing and trying to type. I get to the point......I can't sit any longer because of the pain. We are not offered short term or long term disability. My health insurance is not good at all which has caused major medical debt. But, I still keep pushing down the path to find answers. SSDI would be my very, very last resort. I do not want to live on that. I want to work but I need to be functionable. Due to my stress, frusteration and tears.......I got demoted in my job 2 weeks ago. They felt, I could not be a leader if I was crying all the time from the pain. So, this is effecting my life in more ways than one. The depression is getting worse and those meds are not even helping. Thank you for your advice and thoughts.
I had one doc 4 yrs ago try to dx me with Fibromyalgia. I worked for an Endocrinologist for 5 years and I never really believed in that dx. It is a catch all dx when they don't know what else is wrong with you. No other doc has said I have it. Each doc tells me something different and they ALL disagree with the next. Who do you believe or trust? Yes, I do know something is wrong but no one can seem to get me some relief. I tend to be a "problem" patient because I question doctors, I won't do everything they tell me, I don't trust them, and I am not the kind of patient that fits the "normal mold" for doctors. I am not the patient who matches everyother patient with those symptoms. So, they tend to get fustrated with me and give up with no answers. I have worked in the medical field for 20 years. I am not one who will just do what a doctor tells me and never question them. If I make the choice not to have anymore steriod injections again because I feel they are harming me.......that is my choice and the doctor is not happy with me. (because that is there money maker and they have a "God" complex) Yes, I have worked for a PM doctor for the past 1 1/2 years. I see these patients come through and how strung out they look. You look at a patients ID and they look clean cut, nice looking and like they are the hard-working person next door. Then you look up at the patient to hand them their ID back and see a totally different person standing in front of you. They are slurring there words, not clean-cut, eyes glassy and red, and not kept up. I have seen first hand what all those pain meds can do to a person and I am not willing to go down that road. Several docs suggested asking for a Spine Stimulator Trial from the doc I work for. His response was, to try another injection and then start me on a long acting pain patch. I never got a response for the stimulator. This was after I had already told him 5 times.....NO more injections and quit throwing meds at me. I have a hard time with medications. A little, goes a long way in my body. I seem to react to a lot of medications in a negative way. I can not be doped up, high as a kite and function at work as a Billing Manager. I would be giving away free services! Lol! Several people asked what meds I am on and what I have tried. I will list them but keep in mind......I work for the PM doctors and meds have been thrown at me right and left. This following list is ONLY from my current doc and employer. I have tried:
1. Tylenol 3 - no help
2. Percocet - caused me to itch all over
3. Vicodin - started out 1 a day and ended up with 5 a day with no relief
4. Nucynta - made me higher than heck and couldn't even hold my head up
5. Norco - currently taking for pain and taking up to 5 a day
6. Lexapro - currently taking and not working
7. Klonopin - currently taking and not working
8. Mobic - currently taking and not sure if working
9. Nuvigil - currently taking and can't hold my head up without taking it
10. Prevacid - currently taking
11. Inderal - currently taking
12. Prednisone - currently taking daily and just started last week (this is to jump start my adrenal gland that partially shut down from all the steriod injections
13. Cymbalta - didn't work
14. Lyrica - didn't work
15. Skelaxin - didn't work
16. Flector Patches - didn't work
17. Ambien - didn't fill script
18. Robaxin - didn't fill script
19. Ryzolt - didn't fill script
20. Ultram ER - didn't fill script
I also take a multi-vitamin, vit-C, vit-D3, Omega 3 w/glucosomine, and calcium. The Endo wanted to start me on a med for bones due to all of my injections I had. I asked to take Calcium instead. He agreed if I take 1500 mg a day. So, as you can see, I have had my share of meds. I do not want to live on all these meds. I stopped my a local health food shop today. This lady is a walking encyclopedia about nutrition, meds, herbs, and vitamins. I told her my story. She was not excited about the "cocktail" of meds the doc has me on (Lexapro, Klonopin and Nuvigil). She said, no wonder I was all screwed up. She also explained that your body needs 4 items to live.......air, nutrients, water and I forgot the 4th. I am not a water drinker and I have been skipping meals due to the excessive pain. Her advice was to try and drink more water, try to eat regular meals and stay away from foods high in sodium, take vit D3 (6000 iu) and Magnesium. She gave me reading material on Magnesium Deficiency. I have most of the symptoms on the list. I guess, this is going to be the next thing I try. At least, it is natural and not going to harm me or dope me up. We also discussed stress and what it can do to people. I am at my end, so I might as well see if this works. I am also, going to try and ween myself off the Lexapro and Klonopin. Thank you for your support.
1. Tylenol 3 - no help
2. Percocet - caused me to itch all over
3. Vicodin - started out 1 a day and ended up with 5 a day with no relief
4. Nucynta - made me higher than heck and couldn't even hold my head up
5. Norco - currently taking for pain and taking up to 5 a day
6. Lexapro - currently taking and not working
7. Klonopin - currently taking and not working
8. Mobic - currently taking and not sure if working
9. Nuvigil - currently taking and can't hold my head up without taking it
10. Prevacid - currently taking
11. Inderal - currently taking
12. Prednisone - currently taking daily and just started last week (this is to jump start my adrenal gland that partially shut down from all the steriod injections
13. Cymbalta - didn't work
14. Lyrica - didn't work
15. Skelaxin - didn't work
16. Flector Patches - didn't work
17. Ambien - didn't fill script
18. Robaxin - didn't fill script
19. Ryzolt - didn't fill script
20. Ultram ER - didn't fill script
I also take a multi-vitamin, vit-C, vit-D3, Omega 3 w/glucosomine, and calcium. The Endo wanted to start me on a med for bones due to all of my injections I had. I asked to take Calcium instead. He agreed if I take 1500 mg a day. So, as you can see, I have had my share of meds. I do not want to live on all these meds. I stopped my a local health food shop today. This lady is a walking encyclopedia about nutrition, meds, herbs, and vitamins. I told her my story. She was not excited about the "cocktail" of meds the doc has me on (Lexapro, Klonopin and Nuvigil). She said, no wonder I was all screwed up. She also explained that your body needs 4 items to live.......air, nutrients, water and I forgot the 4th. I am not a water drinker and I have been skipping meals due to the excessive pain. Her advice was to try and drink more water, try to eat regular meals and stay away from foods high in sodium, take vit D3 (6000 iu) and Magnesium. She gave me reading material on Magnesium Deficiency. I have most of the symptoms on the list. I guess, this is going to be the next thing I try. At least, it is natural and not going to harm me or dope me up. We also discussed stress and what it can do to people. I am at my end, so I might as well see if this works. I am also, going to try and ween myself off the Lexapro and Klonopin. Thank you for your support.
I was told, I was born without a groove behind my ankle bone. So therefore, my tendon would go back and forth with I walked and over a period of time......it tore and thinned down. I was also diagnosed with Achillies Tendonitis, heal spurs, and both feet pronate. My feet have gotten worse. The doctors tell me, the stress fracture and edema is coming from the surgery I had and the way I am walking on it. I am putting more pressure on the right foot now and so that foot has started to have issues. Therapy told me......my gait is off, I am not walking heal to toe, I have shortened my stride, I am not engaging my thigh and upper leg when I walk, I hyper-extend my knees when I stand and walk, I have bad posture and I have lost all strength in my thighs and legs. They used to be the strongest part of me. All this has been created over the past 5 years to compensate my pain in my feet, legs, and back. One tends to adjust how they do things to keep the pain away, even if it is incorrect. Now, I am supposed to undue all of that and I still have the pain. ???? I have had kidney stones x2 and lots of blood work. Nothing was ever detected. I will keep that in mind though. Thank you for the thought.
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First, I would like to say thank you to everyone. I have never been on a forum before but I was so desperate, I thought I would try it.
I can definitely understand your frustration!
What pain medications are you currently taking?
What pain medications are you currently taking?
Hello kelsgor,
Welcome to the Pain Mangement Forum. I am so sorry to hear of your continued chronic pain (cp) and the havoc it wreaks on your life. I and many of us can relate. I have certainly been there in regards to maintaining a career and struggling through CP. I was able to do it for years but like you would come home and collapse on the bed. All my energy was spent for the day and than some. The pain level so high I could no longer function. So I certainly understand that predicament.
I obviously am not an expert. Your experience in a PM Clinic should offer you great insight and various options. As I read your well written history several things came to mind. First, have you been evaluated for Fibromyalgia or one of those similar disease conditions? Do you respond positively to the trigger point test?
The new stress fracture in your foot could be related to your prednisone intake. As you know steroids can effect the health of our bones.
I do not have Fibro. I have SIJ Dysfunction along with other multiple painful sites due to a serious MVA some years ago. But I do know that when my SIJ is especially painful the other areas of pain increase. It's like my body says, "OK, one, two, three, lets all hurt together." So it is possible to have several things going on which causes multiple painful sites and not have Fibro or a similar condition. But I would have that ruled out or in.
Have you requested copies of all your medical records? If not I certainly would and begin shifting through them. Be your own detective. It sounds like you have enough knowledge that you can understand most of them or research what you don't.
I think I would go out of network. Let some fresh eyes take a look at you, maybe repeat some testing and begin at the beginning. I would make an appointment at one of the nationally recognized clinics.
You are young to have to experience so much pain. Mine began in my early thirties also. I struggled to maintain my career for years and was told from the beginning to apply for SSDI. I waited much too long. But apparently it is true that the older you are when you apply the more likely you are to be approved. I was approved in less than four months which is rare. But I have been so obviously disabled for so long and had years of medical records to substantiate my pain and limitations. And years of medical records by physicians advising me against continued employment.
My pain is more manageable when I can rest as needed. If you cannot maintain employment I encourage you to apply for SSDI if at all possible. If you have a STD (short term disability) policy or a LTD policy that could hold you over till approval. It costs nothing to discuss the possibility with your local SS Office.
Please keep in touch and let us know how you are doing. Please remain active in our community. I think you have a lot to offer our members. We all have our own personal "expertise" gathered mostly from our journey through pain. I'll look forward to hearing from you again. Hang in there. We are here to offer support.
Take Care,
Tuck
Welcome to the Pain Mangement Forum. I am so sorry to hear of your continued chronic pain (cp) and the havoc it wreaks on your life. I and many of us can relate. I have certainly been there in regards to maintaining a career and struggling through CP. I was able to do it for years but like you would come home and collapse on the bed. All my energy was spent for the day and than some. The pain level so high I could no longer function. So I certainly understand that predicament.
I obviously am not an expert. Your experience in a PM Clinic should offer you great insight and various options. As I read your well written history several things came to mind. First, have you been evaluated for Fibromyalgia or one of those similar disease conditions? Do you respond positively to the trigger point test?
The new stress fracture in your foot could be related to your prednisone intake. As you know steroids can effect the health of our bones.
I do not have Fibro. I have SIJ Dysfunction along with other multiple painful sites due to a serious MVA some years ago. But I do know that when my SIJ is especially painful the other areas of pain increase. It's like my body says, "OK, one, two, three, lets all hurt together." So it is possible to have several things going on which causes multiple painful sites and not have Fibro or a similar condition. But I would have that ruled out or in.
Have you requested copies of all your medical records? If not I certainly would and begin shifting through them. Be your own detective. It sounds like you have enough knowledge that you can understand most of them or research what you don't.
I think I would go out of network. Let some fresh eyes take a look at you, maybe repeat some testing and begin at the beginning. I would make an appointment at one of the nationally recognized clinics.
You are young to have to experience so much pain. Mine began in my early thirties also. I struggled to maintain my career for years and was told from the beginning to apply for SSDI. I waited much too long. But apparently it is true that the older you are when you apply the more likely you are to be approved. I was approved in less than four months which is rare. But I have been so obviously disabled for so long and had years of medical records to substantiate my pain and limitations. And years of medical records by physicians advising me against continued employment.
My pain is more manageable when I can rest as needed. If you cannot maintain employment I encourage you to apply for SSDI if at all possible. If you have a STD (short term disability) policy or a LTD policy that could hold you over till approval. It costs nothing to discuss the possibility with your local SS Office.
Please keep in touch and let us know how you are doing. Please remain active in our community. I think you have a lot to offer our members. We all have our own personal "expertise" gathered mostly from our journey through pain. I'll look forward to hearing from you again. Hang in there. We are here to offer support.
Take Care,
Tuck
I am so sorry your in so much pain.
Has your doctors discussed the possibility of Fibromyalgia?
It may be something worth looking into. Some of the symptoms you describe lead me to think you could have Fybro.
I know it is very frustrating to be in pain and KNOW something is wrong only to have the doctors settle on something anything to diagnose you and the treatments do not help.
Have any of the PM doctors you have seen addressed your pain and tried treating it with extended release pain medications.
I know you probably do not want to be on pain medicines but sometimes we have to take them to have any quality of life. You sound as if your ready to give up. that is not good and I want you to know that there is help out there there is hope!
Treating pain is no different than treating any other disease. There are medications that can hep you deal with the pain and bring your levels down to where you can function. Working and then coming home to bed is not really functioning as you already know.
There is help and hope as I said.
What medications have you tried so far. I would recommend you speak to the PM doctor about a long acting extended release medicine that will offer relief through out the day. You will need a break thru medication as well most likely.
We are all here for you and will hep in any way we can. Just being able to talk to others is very helpful.
Has your doctors discussed the possibility of Fibromyalgia?
It may be something worth looking into. Some of the symptoms you describe lead me to think you could have Fybro.
I know it is very frustrating to be in pain and KNOW something is wrong only to have the doctors settle on something anything to diagnose you and the treatments do not help.
Have any of the PM doctors you have seen addressed your pain and tried treating it with extended release pain medications.
I know you probably do not want to be on pain medicines but sometimes we have to take them to have any quality of life. You sound as if your ready to give up. that is not good and I want you to know that there is help out there there is hope!
Treating pain is no different than treating any other disease. There are medications that can hep you deal with the pain and bring your levels down to where you can function. Working and then coming home to bed is not really functioning as you already know.
There is help and hope as I said.
What medications have you tried so far. I would recommend you speak to the PM doctor about a long acting extended release medicine that will offer relief through out the day. You will need a break thru medication as well most likely.
We are all here for you and will hep in any way we can. Just being able to talk to others is very helpful.
I don't know if this will help you or not but I work with a person whos feet were bothering him for along time. He finallly went to the doctor and they did a test on him that showed up that he had cancer of the kidney. Thank god he got in when he did or it would he spread and gotten much worse. Have they done any blood tests to look for kidney problems.
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