Hello there everybody, I really hope very much that here I would find some people that can relate to the reason why I have joined this site and why I thought about posting this. I need to start off by saying that I am a female in my early 20s and the problem it is that I have been dealing with doctors, with a lot of doctors, for the last 5 years or so and in the end I’ve always been getting disappointed. I also have to say that I have been diagnosed by surgery with endometriosis (for those who does not know what it is you might google it and find out, it is a very painful female condition) this past October and after that with fibromyalgia, approximately 2 months ago or so. I am pretty much venting when I am saying: why the heck they won’t even try to help me? I do know that my pain is real, it really is, I am not an addict and I am not trying to get the medications because I’m looking to get high or whatever else. I am only somebody who really wants and tries hard to get their quality of life back but there’s nobody who really seem to want to help. They are telling me that my pain is partially in my head only, and this is why, of course, they have tried the neuro drugs on me but of course I have had no positive results from this. I am having no history of drug abuse besides only some ganga in my teens, but I’ve never abused anything and they do not know about what happened in my teens and I surely won’t ever tell them about that. really, I’m sure I’m not the only one who thought about this, why there are so many doctors who are so afraid to prescribe narcotics to people when we’re in such pains? And I want you to understand me right, I really do not want to get loaded up with any kind of pills and trust me I wouldn’t want to take them on a regular basis and I wouldn’t, all I need is something on my worst days which it is actually half of the month, which I do know that it is a lot, however without them is even worse and this is very frustrating. I did have found a couple of vendors that have finally helped my needs and I am extremely thankful to this place and to administrators who made it real because with the help of such a place I can search and I can learn more and more every single day. but somehow, it still feels frustrating that I’ve got to this point. At some points I just feel like the doctors are my enemies which I do know that it is not true, but that’s a very strong feeling I get from what’s happening with me. besides, stepping away and doing all of the things that are needed myself has really worked out so far, at least much better when with the help of the doctors.
doctors don't believe my pains
- Thread starter RoseDee
- Start date
Hello RoseDee and warm welcome on our forum! Given that you are having a legitimate pain condtion and you have found yourself here, at the current moment in time that is something which you really have to consider to be both pretty lucky and pretty fortunate as well.
So well, the problem for you it is that, as I guess that you already know it, the drug laws are really and literally forcing all the doctors to do away with the fact of prescribing narcotics and those few of doctors which they actually do prescribe narcotics to their patients are going to be extremely carefully and detailed monitored.
The fact that you are in your early 20s now pretty usually is going to have an influence on the doctor’s decision for prescribing a medication to you, however even so you’ve got to know that the age does not really matter at all because all the ages, genres and people with all symptoms and health issues are being cut down or some of them even cut off of medications.
I’ve got to say that I have already made those statements in the past in the forums and I do know that it may sound like I am defending the doctors or something in this matter but this is not necessarily true. I’m really not trying to defend anybody, what I really want to say and what I really defend it is the fact that exactly as our medication use is continued to be monitored and shut down, exactly so does the doctor’s right to prescribe it to the patients.
And also, one very important point that I would like to ask you to note it is that like in any other profession and anywhere else in the world, there are good individuals and there are bad individuals. There’s nowhere in this world when everybody is good or/ and everybody is bad. Everywhere, in whichever profession, country or whatever you would find good individuals and bad individuals this is why all of the medical world or all doctors in general should not be lumped together because this would be a mistake if we would, exactly the same as all drug users should not be all lumped together because it would be a mistake if we do.
I remember that there have been a time (not so long ago, by the way) when there was a very controversial topic about self medication etc. and I remember that there have been a lot of people who have been totally against self medicating, or at least this has been their opinion when they were speaking about this in public view. However, even so, I really think that there are a lot of people who have ultimately found that their choice is or has come to that point that they are either living in constant pain or they are doing something about that pain themselves as long as nobody helps them, and I’ve got to say that unfortunately, when doing this you are breaking the law as it is against thing. but thinking for a second longer about this: what else to do?
Of course I can’t be sure about other’s opinion upon this, however, to myself it is totally against the law of living to have to endure and to suffer in pains because of some overzealous government factions who are being focusing all of their attention on the wrong section of dependent and addicted drug users. I’m not encouraging now any kind of drug addiction and yeah, I am being totally against it, but we should make a difference here. so well, when it comes to the point when I am making orders for my medications because of the fact that I truly need them, I am essentially breaking the law and the same government entity really wants me to feel bad about doing that, making me feel bad that I am breaking the law, however I do not, not in the least.
From as much as I can see it is that this entire crackdown on drugs it is defeating the purpose, due to the fact that when an pretty big number of people are having to resort to the fact of getting their medication themselves and to administer it all on their own, yeah, there are sometimes when bad things are happening, unfortunately.
However, we have got to the point as to why it is so good for you that you have found this place now. and then again, I really want you to understand me correctly, to understand that I am not trying to say that this is the place where a person can become an expert in self medicating or to find anything and everything that they ever need in their life. However, what I am really trying to say here it is that to open your statement, I am more than sure that there are really a lot of people who could relate to your reason of joining this site. and therefore, there are going to be a lot of people whom you could share with and with whom you could relate your experiences and together we all could help each other to become more informed therefore to be happier and what’s above all… to be safer. I honestly think that if we would try doing so at least somebody might be helped and this is already a lot.
EmmaHarded
New member
Hello there RoseDee. I’ve got to say that even though I am a lot older than you are, I surely can relate to this situation of yours since I have been in your shoes some years ago and I do know how it feels. I really cannot express my feelings and tell you on how lucky I have been to simply, accidentally happen to have an incredibly caring and caring professional primary care doctor who never gave up on me. The problem that you have it is exactly the one that I was struggling with because all my problems have started with some severe endometriosis to the point of having to have a hysterectomy for that condition, however even for that, my doctor has given me a script of adequate pain medications in the time I have been trying to address the issues with the surgeries.
So well, then later after that, I have also been diagnosed (as you) with fibromyalgia and I can tell you that my doc. have not immediately started to kick me with opioids but we went through a series of medications first then at the time, and they have been thought to be some helpful medications back then. But yeah, as much as you can understand, none of them were. Then there was a physical therapy which has actually made it all even worst than how it was before it, acupuncture… on and on continuously until both of us could honestly say that absolutely all of the other alternatives had been completely exhausted. Now, looking back to that, I am thinking that it has been most likely a necessary to go through that if only to be able to defend moving on to a prescription that has allowed me to have my life back, finally. And by saying this I am not trying to make you think that it is the only thing that would work and you’ve got to go get it right away. What I am trying to say is that you’ve got to try first all of the other alternatives and IF nothing at all works then you might go to something else. It is very important to try them all because my doctor have been my defender and she has told me that she would fight back anybody who would at least try to question her decision and the choice of medication she has taken since both of us have fully agreed to a step approach that was reasonable first. Without trying all the other alternatives, you cannot fully defend the choice of taking such drugs, isn’t it? now… unfortunately that doctor have moved and I really miss her very and very much… even to this day (although pretty much time passed) but this is because I am feeling like I have lost my strongest advocate and my best doctor!
And I’m not trying to offend anybody, my current doctor also seem to be a professional and she is continuing the treatment plan as my old doc. established, however I really do not feel as if she has got my back or she would stand up fighting for me in case the regulations are going to get even stricter than how they’ve got.
Since I have got my fibromyalgia diagnosis, I have been diagnosed with MS, I have had a hip replacement, I have had a surgery for lung cancer and I have had severe arthritis in almost every joint that I have. Adding all of that on the fibromyalgia I am suffering from I am still feeling more vulnerable than ever that at some point I could lose an adequate pain treatment and I can only imagine what follows if I do… I can guess… or I can hope that you are going to keep on trying to find a sympathetic and a courageous doctor that really wants to help patients and they would try their best to do so. There are doctors who choose this job because they really want to help people but there are others who choose it because it “pays a lot of money”. trust me, there’s a doctor between these 2 kind of doctors. But even so, you’ve got to give your doctor time because under so much pressure that now is all around… it is near to impossible to do it all quickly and especially if you are a new patient..
Yeah, Donnelly is definitely right about that. It is not the fact that the doctors really do not want to help you, it is mostly because they are having their hands tied and they can’t really help you. they are being very strictly scrutinized and in case something is found that they have done wrong (by accident or whatever) then they might end very badly. You’ve got to know that they are being paid with some visits all the time now and they can’t really do anything if they are not allowed.
Hey there, I just have got back from a pain management appointment and I have asked this very question myself either… as to why is the DEA essentially barking up the wrong tree continuously. They have said that the PCP’s are getting the most flack due to the fact that they are the least educated in the pain management. OP, your story and all that entire situation sounds exactly as my friend’s story so I do know and understand very well what you are talking about. She just kept to search and search and so on for a doctor until she has finally found a compassionate one. what I can recommend you to do is to get a binder and to keep all of your records together and you’ve got to highlight the tests, which medications have worked and to which extend for you and which of them did not and so on and so forth. You never know but it may mean that you may even go to a fibro specialist or equivalent. You’ve got to fight your way to get your medications legally as it would be the best method. I do know that it stinks I do know that it hurts and that you would want your meds right now, but getting such potent medications requires time… unfortunately.
Oh and yeah, I almost forgot. Now that my kid it is done with the cyber school and getting straight A’s (apologize for my brag), I am now going to start researching or I am going to try my best in order to find demographics of how many legit pain management people are looking for heroin. I did have seen some stats quoted, however I really want to compose a letter to a few fellow alum who are in the Congress. Now. I totally and firmly believe that this is the DEA war on the drugs du jour… heroin, crack, crystal meth and so on, I guess you have got the point. Not sure but wasn’t it nancy reagan’s pet project? I do know that Melissa Gilbert has a spokesperson and in her bio she has laughed her @ss off for how much of a hypocrite she really was…
“Oh and yeah, I almost forgot. Now that my kid it is done with the cyber school and getting straight A’s (apologize for my brag), I am now going to start researching or I am going to try my best in order to find demographics of how many legit pain management people are looking for heroin. I did have seen some stats quoted, however I really want to compose a letter to a few fellow alum who are in the Congress. Now. I totally and firmly believe that this is the DEA war on the drugs du jour… heroin, crack, crystal meth and so on, I guess you have got the point. Not sure but wasn’t it nancy reagan’s pet project? I do know that Melissa Gilbert has a spokesperson and in her bio she has laughed her @ss off for how much of a hypocrite she really was… “
Shiffft has mentioned this and I’ve got to say:
As much as I know and as I can understand, the War on the drugs is (or at least was) supposed to be a war against drug addiction and the many problems that it is bringing to the society by the drugs you have just described. The intention has not been supposed to ever be put toward prescription drug users who need it, and even more than that, not turned on to those of whom are using them for the chronic pain, for legit chronic pain that it is legally diagnosed by a professional doctor.
So well, as far as how many legitimate pain management people have resorted to use heroin, in my own opinion it is that there are not going to ever be very many who really do, due to the fact that most of the patients in pain are having a goal of lessening of their pain, of getting their “normal” life back, and surely they do not aim a goal of “getting high” and nodding or anything in this matter. One other factors would be that purchasing heroin off from the street it is not going to be an open and an easy “journey” for most of the patients being in pains due to the fact that it is simply not a part of their lifestyle (again, I am now talking in general lines, I do know that there are exceptions, there are always exceptions especially when talking about people), and I do know that most of them do not want and they do not intend it to be. or again, most of them.
Honestly, I one really just cannot see or forsee many of the elderly pain medication patients who have been cut back or maybe completely off from their medication to hop into their car and to head up for the nearest street corner to try their luck and hook up with a likely looking person who might be able to get them what they need… some dope… I’m almost 100% sure that it is not going to happen like that. and most likely, by doing so you have to think what’s worse for you: going to jail or being in pain? Because doing so really puts you under a lot of risk of going to jail.
I one would think and would say that those few ones who are hooking up with a street drug then they already have had or have at least some connection, but as I said, only a few of them. as much as I can think about it, there are a lot of the middle aged people that are living some very productive lives in society and to have their pain medications cut back or off at all it is simply getting ridiculous, but unfortunately that’s how it happens. All of those people, many of which are having lovely families, are having homes, careers and plans for future etc. are not going to jeapordize the entire their lifestyle by trying out to find some street drugs that might make them very big problems. I am pretty sure that instead, a lot of them are simply going to continue of suffering in pain and they would try their best to carry on with their lives, purchasing OTC pain killers or whatever else they can do it and to make it through their lives the best way they can. and I do understand them very well. A lot of the members here are most likely in this position right in this moment and a lot of people who are joining this forum or other similar to this are joining for this exact reason.
And to be honest with you, I can think that being a forum member here is really good as I have made a lot of some really good friends that although I have not met most of them, they did helped me a lot, by talking with me, supporting me when needed, providing an advice when needed and so on, but if we all have had a choice of having our prescription drug available from our doctors, I am thinking that most of us would never have the need to be online anymore in order to make orders for medications. the reason why lots of members are here it is because they cannot get the medications that they need.
Elizabeth Dangar
New member
Hello everyone. just thought about posting my 2 cents here. not so long ago I have had cervical surgery for bulged discs. When I have left the hospital my doctor has been very generous about meds and I’m pretty sure that my refill is going to be the same. However, I wanted to share with you what he told me… about how the DEA has given him loads of sh*t for some of his decisions of prescriptions to give. He has described me how it all goes and he is merely trying to help his patients but he is being told that he should not do that and that and every single of his move is dissected… he said that he cannot work as he should, that he cannot help the patients as he should. We are not the only ones suffering from this… it is sickening. And even so, the DEA is “surprised” and it is alarmed by the jump in the heroin use… That shouldn’t be that big of a surprise for them. I honestly think that they are the ones who are pushing and forcing people into doing it by constantly denying the doctors their ability to normally and properly treat people that are in the pain. That’s simply a stupidity when the doctor took a decision that the patient needs to take it and somebody who merely studied medicine (if any) simply says: no. it is extremely sad… and it is believed that it is going to get even worse than now. one day we might wake up and see that they have banned any use of narcotic pain killers altogether regardless of the condition and so on. and the worst part is that it seems that there’s nobody who can stop them from doing that!
Hello RoseDee, I am not very sure if somebody else have ever mentioned this to you but I think that you really should start a pain log. All you’ve got to do it is to get yourself a small notebook and to write in it every day of what’s happening. You’ve got to describe the weather, your tasks as well as everything else that is making you hurt your makes you feel better. I think that you’ve even got to describe your sleep as well as how the pain is waking you up, or if it’s not (and I would suggest you to write down the time when this happened as well). During the time I have been in PM this has been very and very helpful for me of getting the medication that I really needed to get. Not sure if this would happen to you either but I have even been given some medications for breakthrough pain as well. besides, you really need to describe your good days as well, and then, when you are going to see the doctors then you’ve got to bring it with you and show them so they could have an better idea of what to do etc. I really hope that this is going to be helpful. good luck!
Oh yeah, I do agree with your Donnelly, and this is the reason why I am thinking that the DEA is now looking for the proverbial quarter under the lamppost. And I think that they would never find it in there. besides, I am equally feeling sorry for our vets as well, who are being screwed as well either.
Besides, I agree, I totally agree with what mouldS9 said. that’s totally right. when the pain is well documented then the DEA cannot really shovel as much. however, it is pretty sad that Prince’s death set ALL of us back a million much needed prescriptions.
So well, hi there Rose Dee and welcome on the “pain” side… I’ve got to tell you that I am exactly in the same boat as you are with little exception: which is that I am a female in my late 60s (lol) and even so, the doctors still do not believe me, that is why, you’ve got to believe me that your age does not have anything to do with your age if that’s what you’re feeling. They do not give me medications and they do not believe me in my late 60s so… no changes. I have also been diagnosed with endometriosis in my 30s. the doctors do not think that it has been enough to remove or to take the medications for, that is why I did not. so well, this has left me with some “unexplained infertility” and made me unable to ever have a child so I never had one and of course, I won’t. PLEASE, this is for your own well being, you’ve got to make sure that they are taking all the time that they can in order to deal with your endometriosis, it is extremely important for you and it can change your life!
Of course, I also have found out that I am having fibro, it has happened in my late 40s (a bit less than 20 years ago) and I have gone off and on finding a doctor who can deal with it, I’ve been searching for it very long time. in the beginning I have had some doctors who were willing to prescribe me some lyrica (at only $1000 per month) and then I have ended up being put on vicodin, however it has been way too strong for me in order to be able to properly work in the time I’ve been under its effects. after the vicodin, darvocet has been the next medication that was prescribed for me and it has really worked extremely well for me, however then they have taken it off from the market and I’ve been left with no other option than to search for something else. after some researches that I’ve had, tramadol has been the next medication that they have tried on me and it has been ok, however this has been until they have put the tramadol scare into everybody.
And now, here I am here when my current doctor does not want to prescribe me anything at all for it this is the reason why I am not in the process of searching for a pain doctor or for somebody who is familiar with fibro as my current doctor really seem to be very afraid to prescribe me any type of pain killer for me (not talking about some stronger ones) and without any pain killers I am just about in tears night by night. yeah, I do know that it is hard and sometimes it feels like the doctors do not want to help us out, but you’ve got to hang in there my dear and you should not do what I have done. just keep in mind that doctors are definitely not gods and this is why they do not know everything and they, of course, do mistakes. Lately I also have started to notice that some of them are simply lazy and so they are only trying to save their butts from the AMA (although there is no reason in doing that as long as they give you the mediations as long as you’re in some real pain. But I do know very well that they could make a very big difference in our lives and that’s kind of sad… I’m feeling sorry for you and for me as well
“I’m sure I’m not the only one who thought about this, why there are so many doctors who are so afraid to prescribe narcotics to people when we’re in such pains? “
I can answer your question. Or at least I would really try to. It is because of addiction as well as the fact that they could lose their licenses, hence they lose their jobs, money, professional careers, might lead to losing their families and their overall life. you do know that losing their licenses it means their livelihood. And in case something like that do happens then they are having a lot of problems. they might even get to jail if the judge thinks that the doc prescribed those narcotic pain medications intentionally (even if they haven’t). so well, now, having all of that in mind, I do understand why they do not want to risk. and how are they to know which people are going to become hooked and which of them are not? I one do not know who GPs are responsible to in the US, however here, it is the General Medical Council and they are having some strict guidelines. In case a GP is following them and something is going wrong, they are fairly safe. In case they have acted anyhow and only a bit outside of those guidelines and something is going wrong, they are on their own then and that’s…. not good for them. and secondly, as well as the US is taking the fault here due to the fact that it is leading the world in where there is blame, there is a claim. I one have had an accident at work, I have had an accident at my home, I have had an accident in your pants and then it is not your fault and it does not matter at all how stupid you are, somebody else is going to pay for this. lawsuits, who is going to put themselves at the risk. Where as if you have obtained the drugs and got hooked, there is going to be noboy else to blame or to sue.
So well, blame the patient who is putting the GP in the firing line. Just try to imagine yourself if all the lawsuits were banned tomorrow, how much more comfortable GPs would be in prescribing. My GP has prescribed me some diazepam 2 times a day for alcohol detox I’ve been in. He is not meant to do that, however he also do know that those alcohol recovery centres do not know the first thing about how to deal with those people who have become alcohol dependent. However, he is known me for 15 years and he does know that I would never try to consider legal action, due to the fact that I do know what I am taking and that it is my responsibility. I just imagine if somebody who is younger came into his surgery, that answer that they would get, I’m sure would be a lot much different, as they have grown up in the entitlement age.
Oh well, I am sorry but I do not really have the time this morning to write out an lengthy response that I would want to post to Rose Dee and maybe I would do it sometime later, however all of our talk about the doctors and about their tied hands as well as the DEA putting me in mind of a part of that movie Drugstore Cowboy where the actor William Burroughs is talking about the predictions that he is having in what is coming in the near future (it has been made in 1989). I guess there’s an youtube video about it. you might search for it if you want. I wish you all the best and hugs of support.
Rose Dee, I read your comment and I read all the comments and to be honest I really do not have any more advices than all of the great ideas that already have been posted here in this thread. I just wanted to let you know that here are some really good ideas and that I am going to keep you in my prayers. Just know that we’re all here for helping you when you need it and for supporting you when you ask it. don’t forget to update on how you feel and what medications you have got!
"Hello there Rose Dee, I have been in the exact same boat as you have been approximately 2 years ago or so, this is why I do know what you feel and what it is like. I have “self medicated” myself for a while and used some forums like you are now doing during that time when my back has been so painful that it has been getting already unbearable. I did not have any insurance as I have been between jobs then doing the 3 month wait period at the next job and so on. in the time I have started the job that I am currently having, I have received health insurance on the first day of my employment (because my employer is doing some very extensive and detailed background checks of his employees) that is why I have made an appointment to the doctor as fast as it has been possible.
When I have visited the first doctor he has told me that I have been find and that I have to take Aleve, and after that, it has taken me approximately 8 appointments more or so, crying out at every single one of them in order to try to make any progress at all. Initially, they have started me on a small vicodin prescription and told me to ice, heat and so on and so forth. Besides, they have also told me to go to a chiropractor, which what I have done, however after 8 visits to that chiropractor made it all even worse because my pain has been about 2 times worse than how it has been before doing it. They have made me go to the in house pain NP who have said I went through the RX way too quickly (apparently, it seems that 6/day is WAY too much to them… doh) and then they have told me that if I really was in such pain then I should go to the Emergency Room (ER). So well, I went to the ER approximately 4 times or so (maybe 5, can’t remember) before the doctor’s office customer service has called me to say “hey, what is going on?” I have complained on everything and in the end they told me: “um… in case you are in the pains then you’ve got to keep going to the ER…” I was like… are you freaking serious?
So well, on the last ER visit that I have had, I tried to explain to the nurse working there all of what has been going on and she has recommended me to demand an MRI done (and to be honest… I seriously have not had any one done so far). I did what I was recommended but they have told me that the hospital’s MRI has been broken, go figure, that is why I have called the another hospital that we have in the town and I have asked them for an MRI and I have had it done approximately 3 or 4 days later. As soon as the results, report as well as CD of imagines have all be ready they have called me in, come to find out, I’ve been told that I have had a compression fracture in my thoracic back. As well as bulging cervical discs and this was not all because there were some other things as well (but they were minor). As soon as I have been told this, my very first thought during that time has been: f*ck yeah, now I finally have the evidence to prove them that my pain is real and that they are not going to treat me like some junky or drug addict like they have been treating me until now (or at least gave me the impression that they were doing it). Oh my god… I don’t know if I ever have been more wrong.
The doctor on call at the office have had his nurse call me to say that “dr. so and so is telling that there is almost nothing wrong at all with your back, that is why, the best thing would be if you are going to go and get a massage as well as you might get yourself some more Tylenol and more ibuprofen”. When she told me this news i’ve been feeling like somebody knocked me on my head with something very heavy. I have been speechless. I’ve been shocked, I’ve been mad, angry, dumb founded and literally angry on this entire world. I have been thinking that maybe they have not got the right information and told to that nurse: “look, I am having my report and this is definitely not what it is saying. How exactly can the doctor say that he doesn’t see any problem when it is plainly stating out that there is a FRACTURE as well as bulging discs? these are not conditions that might be treated with a massage”. I guess it has been my tone, or I don’t know, but she did apologize, however she then got off the phone pretty rapidly. So well, I have ended up to email my regular PCP who has responded me with a “I have seen your report, I am going to it in a referral to pain management for you”. to be honest, I have started to feel much better after this. I’ve been feeling like FINALLY somebody takes my pain seriously.
I guess there’s no need to mention that I did pain management for approximately one year or so before they have announced that they were closing both the offices in less than a month. Talking about straight PANIC. Luckily for me, the original NP who has treated the pain patients at my doctor’s office did agreed to take me on as his patient. I truly has been lucky as she has been helpful and mostly she kept my RX’s the same, less 1 5 mg pill per day. Then I have had another MRI done that was showing that besides the fact that I was having an non healing fracture, I also started to have an early degenerative disc disease making it all even worse. I’ve got to say that I am seeing an osteopath who has told me that my right leg is approximately a quarter inch longer than my left one and so he said that this might be a reason as to why nothing is healing for me but it is even becoming more worse. It is a really good doctor that really seem to know what he is talking about. I really respect his professionalism.
I can tell you that it has been a pretty difficult of a journey of pain and suffering from me which I definitely did not liked it. I have been told a lot of times by a lot of people that I am too young to be in the pain (I am 34 years old now, by the way) but I always thought that this is such a stupidity, and it really is. because, let’s face it, the pain doesn’t care how old are you, it strikes you and that’s it. and also I’ve been told that I am too skinny so this is the reason why my back broke (because I’m too skinny, because I’m anorexic…) and I do not normally eat and because I am bulimic and I am throwing up my food so I do not get enough calcium. Hence my back broke. Am I the only one who finds it to be such a big stupidity? Honestly, I simply could not believe that this has been said by a doctor, who have learned, studies medicine and so on for YEARS! I have been about 125 pounds since the time I have been 14- 16 years old and this is in their records. If it would happen that I had an eating disorder then I would be dead a long time ago by now.
Either way, what I am trying to say is that you’ve got to keep your hope, go ahead with your head up, be sure that somebody will eventually help you at some point, however you must advocate for yourself because if you don’t, I really doubt that there would be somebody who would. Keep your points, fight for what you need. And one day you’ll find somebody who would help. as people are different, doctors are different as well which means that when one does not want to help, another one would. You also recommend getting a spouse, boy/ girlfriend, family members to get involved into helping to advocate for you right now. right now you need their help. let them help you. and they CAN help you. I’ve got to tell you that my boyfriend started to go with me to ALL of the appointments I’ve had with docs when I was appearing home in pains and in tears after a couple of visits. It may seem that nobody can help, but they really can because besides me, my boyfriend it is my biggest advocate and the doctors are always carefully listening to him when he tries to explain them how bad my pains is, when he seems me struggling in that pain. I remember when he said: listen, you don’t understand what she’s getting through although you’re a doctor, her pain is so bad that she cannot work normally and when she does go to work she comes back all in pains, lying down on the couch and sitting there crying until it is the time for going to bed and I barely can make her stop crying, we go back sleeping and she cannot sleep because those pains keep her up. Do you think it is easy for me looking at her suffering like that? do you think she’s crying night and night again without no reasons? And so on and so forth. What I’m trying to say is that I’ve got very big help from my boyfriend!
HOWEVER, even so, still you are your biggest advocate! You’ve got to very carefully do your own research, you’ve got to search for people that might be able to help you out and you’ve got to politely demand those things that you know you need when they do not want to offer them to you. Do whatever it takes that would make you get whatever you need. And eventually, you would get it. Yeah, I’ve got to apologize that this is such an extremely long post, I just thought about posting 2-3 sentences here but it seems like I couldn’t stop writing. Anyway, I just really hope that what I have wrote here would help you at least a little bit. I hope that this story of mine would make you hope and make you fight in your own journey. And no, it won’t happen overnight, it might take a while, however you are going to find that help that you really deserve and you would understand that what you’ve done wasn’t useless.
EmmaHarded
New member
Hey there Derrick (strange name for a female, by the way), I am pretty curious on finding on what has been your reaction to Lyrica. That it is the one that thankfully came out after I would been through a lot of other medications, even though they did have me on Neurontin, which as much as I believe, it is only a few molecules away from Lyrica (or I’m wrong?). I can tell you guys that Neurontin did not help me with the pains I have from the fibromyalgia at all. whenever I have been taking it I was only feeling out of it. besides, this has also been when the company has been promoting it off label to those doctors who were having patients with fibro and they were telling them that in case the patients were not responding that well on it then simply get the dosage higher. That’s what they have done on me. when I realized this I’ve been feeling like a lab rat. When I have got about 4 times bigger than the recommended dose and I was still getting absolutely no results and no benefits then I said that enough is enough! Shortly thereafter the company has been sued for their drug reps promoting it for fibromyalgia. Not sure how it all ended, but that’s what I have heard.
However, I find it pretty funny that later they came out with Lyrica and this one got approved for fibromyalgia (though, as I said, I believe that it is only a few molecules away from Neurontin). When I have heard that there is a specific drug that it is made especially for fibro I have checked it out very carefully trying to understand it better and in the end seeing that it is only an offshoot of Neurontin… while the side effects that it has… oh my god. When checking it more carefully… it seems that you are not even able to drive or to do anything at all in the time you have the effects of that drug, yet they do not think whether they should prescribe it or not – they simply do it. besides, I’ve also read some on some other boards that there are people who did have tried to get off from the Lyrica and it was freaking horrible from their stories. I did read a couple of them and the hair on my skin got up. It really sound to be even worse than to taper off from opioids. You surely should be extremely careful with it! So well, I am only curious as to your experience with that one since it does sound even more dangerous than the opioids and even so it does not get the bad rap. Hope you’ll come with an response soon.
hey there Emma Harder. Regarding my nickname, yeah, I know that it is a strange one for a female, but it is not my account 
it is my husband’s and I’ve seen him surfing this forum and got interested. Then I’ve found this thread and decided to post my experience forgetting that it is my husband’s account. Anyway. regarding the Lyrica effects on me, everything that I remember about it is that it made me feel extremely super sleepy while taking it. I’ve never been more sleepy in my life than how I’ve been feeling while on this drug. I think that if you’re having insomnia then this is the right drug for you. I remember that the first time when I have taken it, it was during the night so it wasn’t a big deal at all as I have fallen asleep and that’s it. didn’t realized whether it is the drug or not. however, then the doctor has upped it to mornings as well and this is why I could not wake up. literally. I was like bed bounded. The drug left me unable to leave the bed. It was something like I never felt before. It is very strange when you want to get up but you cannot, it is a type of sleep when only your consciousness tells you that you should wake up and you tell yourself that “I want to be awake and to get up!” however, the rest of your body, every single molecule of your body is laughing at you saying: no you don’t! and you’re just sitting there being unable to do anything. And by the way, yeah, as you said that you can’t drive while on the drug’s effects. that’s true. I wouldn’t recommend you to drive while on the drug’s effects either because it can make you feel that sleepy and driving like that is… very dangerous. But, let’s face the true… most of the drugs, pain killing medicines, are having a warning of not driving or doing anything that requires you to be alert. These type of drugs can interfere with your thinking and impair your reaction so driving while you’re on any drug might be a very bad idea. Although there are some people who are barely feeling anything when taking a drug so I guess only those people could drive on drugs. But even so it is dangerous.
EmmaHarded
New member
Derrick, thank you for sharing your experience with us. I am sure lots of people would find it helpful. at least I do know what effects Lyrica has. Also, regarding what Donnelly said here:
“Oh yeah, I do agree with your Donnelly, and this is the reason why I am thinking that the DEA is now looking for the proverbial quarter under the lamppost. And I think that they would never find it in there. besides, I am equally feeling sorry for our vets as well, who are being screwed as well either.
Besides, I agree, I totally agree with what mouldS9 said. that’s totally right. when the pain is well documented then the DEA cannot really shovel as much. however, it is pretty sad that Prince’s death set ALL of us back a million much needed prescriptions. “
I totally agree with you about documenting as much as you can, this would be the key to success. you’ve got to document yourself, to learn and so on as much as you can for your own protection and well being as well as to make any change in doctors or additional doctors easier. During the time that you are on a pain roller coaster I do know that it is requires a lot of effort and in case you have fibromyalgia with the fibro fog it really can be very difficult, a very hard challenge and this is why you’ve got to keep at least some short notes right after you’ve had the visits or any changes in medications it is the easiest way to do so. I am doing it right in a small pocket calendar that I have, you might do it as well. just think about it yourself.. in case you are going to think that you’re going to go back in a couple of weeks and you are going to remember what have been the effects of a new medication and how you felt on that medications then… well… at least it is not going to be accurate enough. Initially I was also been thinking that I do not need anything in this matter because I’ve always been used to think that I can go back and I could remember very well what has been said during my appointments and various treatments that have been given to me, however it is not so easy since we’re talking a lot in there and I would get it all confused or forget something.
And regarding for Prince, they have not released cause of death, but the stories are out already that there has been Percocet in his system. Though, this is something that I have said all along for as long as I can remember myself. only because of the fact that you are having a particular drug in your system it surely does not automatically means that it has been the cause of the death! It is not known but it is assumed that he has taken way too much of it and there have been some rumors about somebody flying out in order to help him etc. etc. However, the man has had a very serious hip issue that was causing him extremely bad and insupportable pain. They are claiming that he would have been to a pharmacy somewhere locally and there he had been prescribed Percocet. We don’t know, maybe he did overdose, only God knows and He also knows that it won’t be the first time, however this is a very good example here though of how somebody assumed that only having an opioid in your system is going to kill you. Once again, I am not trying to say that he did not OD, however I am just really hoping that it has not been the case.
Thank you very much you all for your answers. I really appreciate it very much! I am now trying to search out for a pain management specialist in my local area and I really hope I would find him or her as soon as possible, or a different doctor too. Derrick, thank you for everything, it does feel like we are on the exact same boat and I can also feel like it is sinking, unfortunately. Thanks for your response. And also, Donnelly thank you for your post. I really loved it. you are totally right it is not all about self medicating, it is a part of it but also wanting to live a normal life without any pains.
Generally, thank you all guys for your replies. I am sorry that I have not posted anything in a few days. but thank you very much for showing me that I am not alone dealing with this… you know, I’m feeling now much better knowing this. it truly gives me hope and kind of a peace of mind as well. I really hope that in time I am going to find a doctor that is going to understand what I am talking about and is going to believe me that my pains are really legit. Whatever the case, I am going to still be here and I am going to give support to other people as you have given me. wishing you all good luck!
EmmaHarded
New member
I think that it is an amazing idea about recording notes rather than to write due to the fact that sometimes (and pretty often) writing for any given length of time can get painful. To be honest, I always have found it very interesting to hear (read) about how other people have or know who is suffering from fibromyalgia. Back in my days when I have been firstly diagnosed with it some years ago I remember that it has been called fibrositis. There are only few people who had heard of it and most of the doctors dismissed it as “one of those things bored women came up with”. and besides, you are most likely right about Prince as well, Donnelly. It is a very sad situation!
And yeah, also, I just wanted to add Derrick that I do know what kind of sleep you are talking about. IMO this is incredibly scary and it truly does not really sound like it is such a safe or benign medication to me. of course I can’t be sure here, however I am thinking that there is most likely an adjustment period, however even so not one I would want to try it out. of course I don’t know about others with chronic pain, however I am thinking that opioids are just as safe when they are taken appropriately and for the legit pain. I think that your body is adjusting extremely fast in most of the cases and even so the medication does seem just to ease the pain without to mess up with your alertness or with your mind or something like this.
Oh yeah, I totally know what you are talking about because the doctors do not believe me either and I do know that this is very and very frustrating. I’m suffering a lot and they tell me that this is in my head and that I don’t have any pains. I only want my life back, I just want to live a pain free life. This pain is making me feel fatigued, sad as well as depressed all the time, continuously. I really can relate very well on how you are feeling Rose Dee, trust me you are not alone with this. I understand every single of your word very and very well. To be honest, I really do not even remember what it does feel like only to be able to lay down at night and fall asleep without my back to hurt so bad, it is something that I did not had for a very long time. there are sometimes when we are taking the small things in life for granted… Everything I want now is to get a little bit of help, better say a little bit of pain free life.