Discussions By Condition: I cannot get a diagnosis.

PAIN so bad death would be a gift.

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: rdderringer
  • April 15, 2009
  • 05:44 AM

I have been to 15 different doctors trying to find an answer to why I am in so much pain. I am 29 I have been in a major car accident. My left femur was hanging out of my legg my right tibia was broken into a horse shoe. This all happend when I was 18 I have always always been a strong person. Pain use to be my friend so I thought. I use to think as long as I can feel pain it meens that I am still alive. But that is not the case any more. During all of that I only took pain meds when I had to I didnt want to build up a tollerance. When I first had my wreck a man told me to only take what I absolutely had to have. He had been in my shoes and he took everything they gave him and at the time he was 46 years old and there was no meds out there that would help him he was immune to everything. I never forgot what he told me and now I am in so much pain everyday that I dont know what to do I have put on this clown face for so many years that I am unable to go to a dr and truely express the pain that my body is in seems that I can hide it from everyone but myself. I pray almost everyday that god will call me home and that makes me so sad because I love life or atleast I use to. I dont have a suicide bone in my body but there are so many days that I wish that I did. A life spent in missery is no life at all. I would not wish my pain on anyone in this world but I do wish that every Dr that I have been too could feel my pain for but a moment and then have to look at me and tell me that it cant be that bad.

From the age of 13 I have been independent and now I am a burdin on the ones that I love the most. I use to be the one they all turned too. But now I dont even have there respect. In this world if a doctor gives you the cold shoulder seems that everyone else follows his lead. I have prayed to be diagnosed with cancer that might sound silly too all of you but atleast then I would have an answer to the endless pain I am in everyday and then maybe I would recieve something for my pain. Im not even sure that meds will even help me at this point.

I have had everything stripped from me at this point there is nothing about me that makes me a man. I can not stand on my own two feet and provide for even myself. I only wish I knew what I did in this life to have this affliction cast upon me. I have always done on to others better than has ever been done onto myself. I have alway prayed for the pain of the ones that I love to be put on my shoulders. If that is the case then please god give me a sighn so I can hold my head up high enough to look people in the eye. Because if this is my test to get into heaven I am afraid that I am about to fail!!!!!!!!!! To everyone out there that is in pain I pray for you from the bottom of my heart. Modern medicine saved me when I was just a young man. Now as a man it has all but cast me aside....

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16 Replies:

  • I feel really sorry for you and the pain you're in. My advice would be take a copy of what you've written here and go see your doctor, don't keep suffering like this get help for yourself it's the only way you'll get anything resolved - so be positive. The mind is the strongest thing we have so work with it, being positive moves mountains, negativity destroyes. I think just talking to a doctor about what's going on in your head will do you the world of good to start with - but you've got to reach out to be helped. Good luck
    maggiemay 68 Replies Flag this Response
  • HelloJust writing to let you know you are not alone. I couldn't have described my condition any better than you have done above. For over six years I have been suffering this unbearable indescribable pain. I have seen all kinds of doctors and have had all kinds of tests in clinics and hospitals but the cause of the pain hasn't been identified.This has ruined my life, my career and many relationships so I can well understand how you feel. Like you I am one of the last people in the World to consider suicide and although I constantly think of it these days. The stigma and the effects it would have on my family and loved ones, along with the ever fading hope of a cure are all that prevent me from doing it.We're literally between a rock and a hard place.Its hard to believe in this day and age that people like us can be left in these kind of conditions with no real help or assistance and little or no sympathy. In fact quite the opposite in many cases.
    Anonymous 42789 Replies Flag this Response
  • Hello rdderringerJust writing to let you know you are not alone. I couldn't have described my condition any better than you have done above. For over six years I have been suffering this unbearable indescribable pain. I have seen all kinds of doctors and have had all kinds of tests in clinics and hospitals but the cause of the pain hasn't been identified.This has ruined my life, my career and many relationships so I can well understand how you feel. Like you I am one of the last people in the World to consider suicide and although I constantly think of it these days. The stigma and the effects it would have on my family and loved ones, along with the ever fading hope of a cure are all that prevent me from doing it.We're literally between a rock and a hard place.Its hard to believe in this day and age that people like us can be left in these kind of conditions with no real help or assistance and little or no sympathy. In fact quite the opposite in many cases.
    Painperson 12 Replies Flag this Response
  • Hello rdderringerJust writing to let you know you are not alone. I couldn't have described my condition any better than you have done above. For over six years I have been suffering this unbearable indescribable pain. I have seen all kinds of doctors and have had all kinds of tests in clinics and hospitals but the cause of the pain hasn't been identified.This has ruined my life, my career and many relationships so I can well understand how you feel. Like you I am one of the last people in the World to consider suicide and although I constantly think of it these days. The stigma and the effects it would have on my family and loved ones, along with the ever fading hope of a cure are all that prevent me from doing it.We're literally between a rock and a hard place.Its hard to believe in this day and age that people like us can be left in these kind of conditions with no real help or assistance and little or no sympathy. In fact quite the opposite in many cases.
    Painperson 12 Replies Flag this Response
  • I am so sorry to hear all the pain you are living with I know all to well what your dealing with and what your feeling doesnt sound crazy at all, I too felt the same before I had a diagnosis I too prayed for cancer and even some day still wish that was the case. I would really look into RSD reflex sympathetic dystrophy or CRPS type 2. RSD is caused from a nerve injury whether just spraining an ankle to surgery or an accident. All I had was foot surgery and within 2 weeks the pain went full body and thats what I am dealing with now. RSD is very hard to diagnose as there is no clear test for it, a bone scan can sometimes show it but its rare, the best way is to find a doctor who knows the disease. RSD is actually more common than people think, yet some go 20 years before a diagnosis. There are said to be 5 million with a diagnosis, 2 million that are going undiagnosed, and there are about 50,000 cased a year being diagnosed. RSD is a very very painful disease on the pain index cancer pain is 26 while RSD is 43 the only thing higher than RSD pain is child brith but that atleast only lasts a short time while RSD is usually life long. I too have everything taken from with all the pain this disease causes, I am only 21 and had just finished collage but now I can nerve work again, I cant ride my horses, drive, fly or even just stand for more than 30min. You really need to find a doctor that can help controll more of your pain. I would try finding a pain clinic as they seemed to help with the pain thing without thinking your crazy.
    nikiski1 35 Replies Flag this Response
  • Hi nikiski1Thanks for the information and suggestions. I'm really sorry to hear about your suffering. It sounds like rdderringer could possibly be suffering from RSD but I doubt that that's my problem since I haven't had an injury or surgery of any kind.I seem to have a form of Epididymitis which is usually caused by a local infection though there are cases where the cause is unknown.It started for no apparent reason and at first they gave me Augmentin (antibiotic) even though they couldn't find any infection. It worked but soon after the course was finished it came back again so they gave me more Augmentin but the same thing happened again. after a few more times the Augmentin didn't work any more.Since then over the past six years I've had most of the common antibiotics (though not the more risky ones like aminoglucosides etc.) but only one "Trimethoprim" worked but only for a few months. I then discovered I was on only half the dose 200mg I should have been prescribed 400mg. Unfortunately by that time it was too late since the infection had obviously developed resistance to it so it didn't work anymore.Because of the fact that this condition has (in the past) responded to antibiotics I feel certain that it's caused by some microbial infection rather than any other cause.However since there are no blatantly obvious signs of it's existence (only a very slight inflamation and swelling which is generally overlooked, and of course the horrible indescribable pain which unfortunately can't be seen) and it doesn't show up in blood or urine or swab samples, I am deemed to have no infection even though I know that all infections can't be found in this way.I feel sure that some antibiotic given in the right dosage and for the right length of time could cure this condition. I noticed on this site under "Latest treatments for Epididymitis:" http://www.wrongdiagnosis.com/e/epididymitis/treatments.htm#latest two classes of antibiotics which I haven't had are listed.Ceftriaxone and AminoglycosideHowever neither of these can be taken orally (only IV or IM) and I expect a clear diagnosis of a particular infection would be required before doctors would be prepared to prescribe them.If anyone has any suggestions I would be glad to hear them.
    Painperson 12 Replies Flag this Response
  • Hi PainPerson, I am really sorry to hear what your all going through and all the pain your in also and really hope if its an antibiotic that will help you will find a doctor to listen to you. I did want to just let you know RSD is also caused by infection, I have friends that got it from respitory infections, ect. RSD is just a real crazy thing it can be caused by like it seems anything like 30 some % get RSD but will go there life time without knowing the cause because they never were injured. I really wish I knew something to help you as I know how horrible it is to live in so much pain day in and day out and are just looking for that one thing to help. I myself went through 110 doctors in 1 year in 6 states from a diagnosis to treatments and now am at 139 doctors. I really hope you find everything you need to help to get rid of your pain. Niki
    nikiski1 35 Replies Flag this Response
  • Thanks nikiski1Is there any effective treatment for this RSD condition?
    Painperson 12 Replies Flag this Response
  • It really depends on the how long you have gone un-treated and how severe it is. The normal treatments start with meds, nerve blocks, PT/OT, when that doesnt work the next is a spinal cord stimulater or pain pump. I have gone through all those treatments but none has helped. The treatment I am currantly doing is the ketamine infusions, there are 2 types of infusions the low dose and the coma which is reserved for the most severe of cases. I believe so far the ketamine has to be the most affective as more people seem to respond to it. I am pretty happy so far with the results before I was in the ER's 3-4 times a week in flares now its like every 2 weeks, before my pain was always at a constant 10 now it can get down to a 7-8 for a few days which helps so much. RSD is just such a hard disease to treat as not one person have it exactly the same and what works for one usually doesnt work the same for another. In the one year of doctors my parents spent about 650,000 on bills. RSD is seen by SSDI which has helped me greatly, as I have been told I probably will never work again which is hard to take only being 21 but I guess its just life. Niki1
    nikiski1 35 Replies Flag this Response
  • All I had was foot surgery and within 2 weeks the pain went full body and thats what I am dealing with now.Hi nikiski1I hope you don't mind if I ask some questions to help me understand the nature of this condition.You say it started from foot surgery. It then went full body.Would you say when it was full body it was centered around your foot or was it more or less evenly distributed throughout your body such that you wouldn't know where it was originating from?Does your foot or any part of you show any signs such a inflammation, heat, swelling, tenderness, discoloration or does it appear to be perfectly normal.Are certain movements of the foot or pressures particularly painful or do such things make no difference.I suppose what I'm trying to determine is, if this is caused by nerve damage would it be local nerve damage from which the pain radiates or some kind of systemic nerve damage where the pain radiates more or less from everywhere.Or are there any general signs such as high temperatures or elevated white blood cell counts(indicating increased immune system response)?
    Painperson 12 Replies Flag this Response
  • Hi Painperson, I dont mind at all answering any questions you have on this disease. Yes my RSD started in the foot in 04 from surgery but my doctor was to blind to see that there was something wrong with the swelling, pain, and color change he just thought it was the surgery so did 2 more to try and correct it one in 05 and 07. It was the surgery in 07 when the RSD spread from the foot to my full body, including internal which affects my heart and bladder. Even with it full body the worse pain is in the foot and is so bad I cant wear a shoe, use cruthes to walk and my foot is curled in dystonia. I would say my foot is at a constant 10 while my body goes up and down from a 7 to a 10 depending if I am in a flare. When my RSD was just in the foot it was always swollen, turned purple, was very sensitive, and had lots of heat especially at the end of the day. Now though with it full body the heat is gone and now all my limbs are ice cold from lack of circulation. I still get color changes especially when I am in a flare then I am red from head to toe with small red dots all over. Since it being full body my blood pressure is always high and goes even higher when I am in a flare. Yes certain movements are really painful for not just my foot but my full body. The slightest wrong movement can make my pain worse and send me into a flare and to the ER. Most RSD patients end up seeing a PT/OT regularly so they can help us not do anything to make us worse. The way they say the disease goes is it starts from one local nerve whether big or small and sometimes for some it does stay local in that area. When it goes full body what I was told happens is that one damaged nerve sets off a chain reaction with all the other nerves and once it hits the spinal colum its like dominos, when one falls they all start falling so ends up systemic. They say it when its in the spine it actually mutates the spinal cord. There is a doctor in Chicago that did a study on the brains of those with and without RSD and the study ended up showing that people with RSD have atrophy of thier grey matter in the brain. There arent really any of those signs like blood cell count or a high temp that shows RSD. The usual signs is the pain, swelling, sensitivity, color changes, hair/nail changes, body temp. changes (like one limb is cold than another) , cold and hot flashes, and there are many more but not everyone get the same symptoms, some just get like 2 or 3. Most people do get a higher immune system, which happened to me for 2 years which in that time I didnt get any illness. After awhile though like me and many others the immune system crashes and then you get sick from everything, I even developed allergies to pets, dust, and pollen which throughout m life I hadnt had one allergy until now. For some patients a bone scan sometimes can show changes which is usually bone loss. I have so many friends with RSD and everyone has gotten it from something different from surgery, sprains, spider bite, infections, dental procedures, getting hit with a base ball, falling, car crash, one even was just adjusting her mirror in her car and tweeked her neck. It really is sad how easy some are getting this disease or like most of us call it the monster. Doctors are still trying to figure out why some get it and others dont like my sister had 2 knee surgeries and didnt get it and I got it from my first foot surgery. Some doctors are thinking its hereditary as there are whole families with it, others think some are just predisposed to it and its just lying in wait to be activated. I hope this info helps, if you have anymore questions dont hesitate to ask. Here are some web sites with some more info if you want to know more. www.rsdfoundation.orgwww.rsdhope.org Niki
    nikiski1 35 Replies Flag this Response
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  • Hi NikiThanks for that information. This has shown me a whole new area I was completely unaware of.I went through everything I could find in those links and it's really horrific to think that such things are possible.I can see myself in many of the descriptions, symptoms and attitudes there. Such as burning pain, reluctance and/or inability to express it. But though I could be wrong I get the general feeling that it doesn't really fit in my case.For example I would describe my pain as:Skin burning or stinging along with a broad deep seated aching which is difficult to locate (but I'd only rate it at around 4 or 5) but certain parts of the epididymis are sharply painful when touched.If that was all it was I could probably learn to live with it if necessary, but the thing that really does me in is this terrible nausea that goes along with it. Somewhat like what you feel in your stomach when your just about to vomit but it's not in my stomach but radiates outwards and upwards from where the pain is. It's quite awesome (in the negative sense) and shocking (it puts me into a steady state of shock) sometimes to the point where I can hardly speak.Does any of this sound familiar?I haven't seen "nausea" or "shock" being mentioned in relation to RSD but of course I've only scratched the surface since I've just found out about it.Another thing I noticed is that everyone seems to unquestionably accept this condition is benign (as in not caused by any agent like some kind of pathogen).At first glance many of the symptoms appear similar to some of the symptoms caused by mycoplasma. As I'm sure you know many conditions previously thought to be benign have in fact turned out to be cause by pathogens. H-pylori and mycoplasma being simple examples.
    Painperson 12 Replies Flag this Response
  • Your more than welcome! Before my diagnosis I too was unaware of such a disease and it truly is a horrific monster. The sad thing is that it is such an unknown disease but yet millions have it. What many of us cant understand was since this was found in the 1800's why is it so unknown in todays medical field. How bad is your burning? Not all patients have the same intensity of pain, like mine is 7-10 while others can be 2-4 it just depends on the RSD and severity. The pain I feel everyday is the burning with also, sharp, stabbing, shooting, throbbing, and acheing. The sensitivity to touch is really hard to deal with also it feels like being cut with glass when someone touches me. Many RSD patients do have nausea and many of us including me are on some type of nausea med. Your stomach sounds alot like how mine feels. Do you ever get like a burning feeling in your stomach almost like you have been vomiting all day? If you have RSD affecting you stomach which it does mine it sounds alot like what your describing. Not all symtoms will be listed just the most common, there are more symptoms like memory loss, hearing problems, vision loss or sensitivity, hair loss, teeth problems, headaches ect. When someone has RSD affecting the organs such as the bladder, stomach, and heart you will have even more different symptoms, such as urination problems from the bladder and chest pain from the heart. What does your body do when you go into like a shock state? Some RSD patients do get those shock states. When I get them my body totally freezes up to where I cant move or talk at all and it can last anywhere from 5 min to 2 hours. They are very pain ful and can be very scary. RSD patients have been given different reasons for them like its a type of dystonia or full body spasms just not sure which it is. Doctors are still doing research but so far havent found any pathogen cause for it. For some doctors this disease is nothing while others know it can be more serious especially when it starts affecting organs. I had to hospitalized for 3 months after the nerves in my throat shut down so I couldnt swallow even a tsp. of water. For most of this disease also gives us high blood pressure from all the pain which of course isnt good for our health but for some of us with the RSD affecting the heart we cant be given meds for the blood pressure as instead of just lowering it a little it drops it dangerously low from like 190 to 85 systolic. The one thing doctors cant figure out yet is why women with RSD that get pregnant actually go into remission for like a year and a half which no one can understand why. I truly am sorry that your having to go through all you are, and truly hope you find what you need to help. Here is another site for RSD that has a lot of info especially the topic RSD puzzels 1-146. http://rsdrx.com/ Niki
    nikiski1 35 Replies Flag this Response
  • I have been to 15 different doctors trying to find an answer to why I am in so much pain. I am 29 I have been in a major car accident. My left femur was hanging out of my legg my right tibia was broken into a horse shoe. This all happend when I was 18 I have always always been a strong person. Pain use to be my friend so I thought. I use to think as long as I can feel pain it meens that I am still alive. But that is not the case any more. During all of that I only took pain meds when I had to I didnt want to build up a tollerance. When I first had my wreck a man told me to only take what I absolutely had to have. He had been in my shoes and he took everything they gave him and at the time he was 46 years old and there was no meds out there that would help him he was immune to everything. I never forgot what he told me and now I am in so much pain everyday that I dont know what to do I have put on this clown face for so many years that I am unable to go to a dr and truely express the pain that my body is in seems that I can hide it from everyone but myself. I pray almost everyday that god will call me home and that makes me so sad because I love life or atleast I use to. I dont have a suicide bone in my body but there are so many days that I wish that I did. A life spent in missery is no life at all. I would not wish my pain on anyone in this world but I do wish that every Dr that I have been too could feel my pain for but a moment and then have to look at me and tell me that it cant be that bad. From the age of 13 I have been independent and now I am a burdin on the ones that I love the most. I use to be the one they all turned too. But now I dont even have there respect. In this world if a doctor gives you the cold shoulder seems that everyone else follows his lead. I have prayed to be diagnosed with cancer that might sound silly too all of you but atleast then I would have an answer to the endless pain I am in everyday and then maybe I would recieve something for my pain. Im not even sure that meds will even help me at this point. I have had everything stripped from me at this point there is nothing about me that makes me a man. I can not stand on my own two feet and provide for even myself. I only wish I knew what I did in this life to have this affliction cast upon me. I have always done on to others better than has ever been done onto myself. I have alway prayed for the pain of the ones that I love to be put on my shoulders. If that is the case then please god give me a sighn so I can hold my head up high enough to look people in the eye. Because if this is my test to get into heaven I am afraid that I am about to fail!!!!!!!!!! To everyone out there that is in pain I pray for you from the bottom of my heart. Modern medicine saved me when I was just a young man. Now as a man it has all but cast me aside.... Hi Rdderinger, I'm in a pain management program that helped me salvage my life being destroyed by pain. Pain that isn't treated causes changes in the nerves and becomes more difficult to treat when it isn't treated and brought under control right off the bat. You were given some bad advice early on and your life has been sacrificed to it. I've been on morphine for 9 years now along with other meds to control various types of pain. I'm doing well. Methylb12 has virtually elliminated the neurological pain I sufferred with for so many years and I'm only in a fraction of the pain I was in 9 years ago. You need to get yourself to a first class pain management clinic where they can help you. Only certain types of b12 can help with neurological pain and other cofactors are needed as well. There are treatments for RSD that can help considerably. The sooner you get proper help the better for you. Feel free to ask questions.
    Freddd 3576 Replies Flag this Response
  • For the RSD pain, try Promethazine. It's a generic of Phenergan, usually used for nausea. That is NOT what it's for in my case. I was prescribed Promethazine for a standard illness 5 years ago, along with two other meds, & the entire week, my RSD ankle was pain free. No doc would prescribe it for me since I wasn't nauseous normally, until I finally found a doc that had a clue about RSD. A neurologist. I wasn't sure it was the Phenergan, but he theorized it was & let me try it for a few weeks. The doc said that RSD patients have higher levels of dopamine in our brains, which is why he thought the Promethazine was the RSD pain reliever five years ago. I did not ask details on the correlation, but will if requested. Some days, the pain is so bad that I have to take two at a time. It can cause drowsiness, so be careful. I really hope that other RSD sufferers can benefit from this.
    rockandahardplace 6 Replies
    • November 19, 2009
    • 06:19 PM
    • 0
    Flag this Response
  • I feel for you. I have lived with chronic pain for 12 years now. I was diagnosed with bulgings discs and degenerative disc disease. For the first 6 years my family physician treated my pain with pain meds and muscle relaxers, but even with the meds 4-5 days a week my pain level would be at an 8 or above. When it got to the point that I was calling for pain meds every month my doc decided to send me to a pain management facility here in Huntsville, AL. Now they give me shots between the 5 lower vertabra on each side of my spine every 3 month and they do help, but I do still live in pain daily...just a little less. No one can ever know how much pain you are in but you! Sometimes I think my wife doesn't even think someone can hurt that bad...even though she has seen me get out of bed in the morning only to fall to my knees and roll over on my side in excruciating pain, and lie after taking pain meds until they start to have there effect.Also I am 44 and was diagnosed with epilepsy at age 23. I went several years without a grand mal seizure, but those resurfaced in May 2011 and I have been having those at least once a month since then, and about every other one of the seizures tends to skyrocket the pack problem. Like you, I wasn't fond of the thought of having to take narcotics, not only because of the tolerance factor, but because of the way they leave me feeling exhausted. But the pain finally got to the point to where it made more sense to keep them in my system instead of trying to catch up to the pain with the meds after the pain level would increase. I know you posted this in 2009 and I hope by now you have found some relief from the pain you are suffering!
    bgs135 1 Replies Flag this Response
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