I can not believe my doctor!!!! What do you guys think?
I was diagnosed about a year and a half ago with Fibromyalgia; I also have DDD and scoliosis. I am a 29 year old female and the winter is really really hard on me. My arms hurt, my legs, my neck, back, and hands hurt; my skin burns and I get really bad migraines. I was going to a pain managment doctor and he was extremely rude to me. I would end up crying after every visit; he basically accused me of lying to him. Every doctor I have spoke to in fact has told me that I am too young to have this many problems. One of my really good friends works for the doctor I am currently seeing. He was really great and understanding.... At first. He told me that he could help me and that Eventually this would all "go away." My son recently got a rash on his stomache and arms, so I called his doctor and scheduled an appointment. I was scheduled to see my doctor on the 23rd of this month; however, he prescribed my meds on the 19th... well anyone that has medication of any kind knows that the next month my meds would be available on the 18th and then the next month on the 17th because 30 days is always one day shy of the first RX accept in months of 29 days. My sons appointment was today so I asked if I could get into my doc today. The nurse asked me what I was there for and I told her I had to get my refills because I didn't have anymore so that is what she wrote on my chart. My doctor came in very aggrivated and told me that he could not "take part in this" and that I am ADDICTED to my medication. He then told me that because I am not making an effort to go walking outside *BECAUSE THE COLD HURTS ME SEVERLY* that I am not even making an effort to get better. He then asked me how many pills I take a day. I am prescribed to take 4 lortab a day and lately I have had to take 4 a day and I am not sleepin well at all. The cold makes my whole body ache terribly. He told me that I had to be taking more than that because I was out of pills. I looked at him seriously confused and said NO SIR I am not out of pills I asked to see you today because My sons doctor is RIGHT UP THE STREET FROM YOU. AND I hate to drive my son in this type of weather. It is horribly cold, snowing, and icy. Needless to say he had me so upset I began to cry. He then told me that He would switch me to a pain clinic and offered me THE PAIN DOCTOR I HAD JUST LEFT and another one. ????????????????????????
I just do not understand SERIOUSLY. I am beginning to seriously believe that there are NO good doctors out there. How can a doctor sit there and tell you that you don't hurt like you say you do and ACCUSE you of being addicted???!!!!???!!! WTF??? excuse my language but i am seriously soooo tired of this bulll crap. Because they go to school for a lot of years they have the right to sit there and demean me and my feelings and my pain????? I am seriously starting to become depressed... I am at the end of my rope. I do not enjoy hurting, I do not enjoy taking these meds and I do not think this is funny or some game.... THIS IS MY LIFE.... If it wasn't for my son I would seriously give up and shoot myself... But I can't because he needs a mommy and he is my whole world... he is the reason I fight everyday to get up and keep going....
Do I sometimes take a extra pill a day? YEP I sure do if i am in serious pain I will take one... does this make me a addict? am I a horrible person because I do not like to lay in agony? I take hot baths, I use heating pads, I have a heated blanket for goodness sake... I have done everything and tried everything that they have EVER asked... and yet EVERY doctor ends up treating me the same way...
WHAT DO I DO??? What do you guys do? Anyone who takes the time to read this THANK YOU... SINCERELY... I am just soo sick and tired of this... its not right... i shouldn't be sitting here crying right now wondering if I am losing my mind and crazy.... I do not imagine this pain it is real... and yet every doctor I go to seems to think I am a liar..... I just wanna give up
I was diagnosed with FMS and CFS when i was 18. I was ignored by most people and looked at like a hypochondriac, even my own family.
I had a doctor tell me he couldnt see me anymore because I cried too much!!!!
I went through some really hard times. I am now 33 and the pain is still here and I was diagnosed 3 yrs ago with Stage IV endometriosis.
Most of the time I dont tell people the pain I am in because 1) they dont want to hear it, 2) they dont care, and 3) they have never experienced pain like this. They will never ever ever understand until they are in that position.
Don't give up :) I am hear to talk if you need someone to vent to or even ask questions etc.
I am sorry to hear that you have and are going through this as well... it is like living in hell... and no one really wants to listen or even cares... Who in their right minds would even WANT or PRETEND to be in this kind of pain?!?! It makes no sense what so ever to me.... Have u eventually been able to find a good doctor? Have u been able to find meds that worked for you? I just keep thinkn that there HAS to be one good doctor out there... doesn't there? Even tho I want to give up, everyday I wake up and look into my 3 yr olds eyes and I know that even if I am living in hell.... it is worth it for him... he needs me... and I need him too.... I think that when I walk into this new doctors office I am going to "interview" him... and if he doesn't foot the bill I will continue lookn... They are paid to help me... they aren't paying me... so you know what? either they are going to listen and care or I will just keep lookn... Im done with the B.S. Either they want to listen and want to help me or they are simply their to think that they are better than everyone else and kno everything... perhaps this is wrong of me to think this way... i'm just so upset and angry... and I think more than anything I am hurt.... its not right... its not fair... but then whoever said life was?
WOW so sorry everyone!! My Doctor told me last visit when I wanted to try the new FIBRO/CFS treatment used to help and has even cured HIV and cut MS symptoms way back its called LDN, http://www.lowdosenaltrexone.org/ I asked him to call it in to my compound pharmacy, he said since I am his only patient with CFS he has no desire to learn more about it and wont prescribe off lable drugs... OMG WTF? are you kidding me? What do we pay them for? EASY STUFF ONLY? Off lable, I said the "label" dose is 50 mg 3 times a day I am asking you Dear Dr for only 1 MG once a day, and you wont even do that? OMG.. thats 150 x LESS than lable doseing!
He wont even give me a firm diagnosis. BUT I have been ill since 1984 but didnt know all the things were related until I had to reserach what an endrogrin doctor suggested back in 2007. Im sick of it all.. at least I know whats wrong with me now its does not make life any easier to life. I am home bound with fatique and pain, I do get out and do water excerise 3 times a week other than that and 30 min at the grocery store a week, thats my life.. I HATE IT! I used to be so active in the early throw of the illness, but once you hit 50, your body will not forgive so easily now..
I am so sorry! This is exactly what I am talking about!!! WHAT IS WRONG WITH THESE DOCTORS?!!!?!?!? I thought that a person goes into the medical profession to HELP people. Not to judge, or tell someone how they feel or demean someone else. Not to tell another human being that their pain can't possibly be as bad as the say it is or to tell someone that they have no need to learn of their illness because he or she is the only patient they have with this problem. WTF?!?!?! I am so saddened by all of this... something needs to be done... something has to give, something has to change. You know I am sorry that there are people out there who lie and mistreat their meds... but WE SHOULD NOT HAVE TO PAY FOR THEIR MISTAKES.... this is ridiculous... and it is so sad... what are we supposed to do? we have to live in pain daily and these doctors want to simply sit back and do what? NOTHING.... except make us feel worse... Just for ONE DAY i would like for my doctor to feel what I go through to deal with the pain I deal with and then look me in the eye and say the things he has said.... OMG... i used to wonder why ppl commit suicide... now i understand... it is because you feel so low and so down and no one cares and no one understands... its like living in your own personal hell.... and ppl who could actually understand you and help you... WON'T... simply bc they don't want to.... that is what it comes down to.... seriously...
Kimmie, thanks for the reply, I can see I am not alone. I urge you to research that website I put up last post. I belong to another fibro/cfs website where I found out about LDN, and many of the ladies are having GREAT results with it. THEY say they got their life back, I want that! I will not stop trying to get well, but it will take awhile I dont have med ins right now so paying money I dont have for my Dr to tell me he isnt willing to help me since he is TOO LAZY? OMG really pisses me off. He suggested I go to the country hospital where they have training doctors. Im not up to a 13 hour ER visit you know? I have to be feeling pretty darn good to sit in a FREE ER room! Oh well, GOD only gives us what we can handle. I hope I am doing someone some good some where with my replies and my research. I shutter to think what is going to go next on my body. Tonight I am having some tummy issues, I hope its nothing serious!!
Most Doctors don't understand fibro and CFS. They may say they do but they don't. It makes me so sad to hear what you all have had to deal with.
I am 24 for and officially been diagnosed 3 years ago. But I have had pain since I was 7. I know people think I'm lazy because I don't work and stay home most of the day. I try to work but never can keep the job for more then a month or so because I just can't handle it. I go out with a group of people and am so wiped out after 2 hours.
I could go on and on about this but I'm sure you are all in the same boat with me.
I'm so sorry to all of you who suffer like me with Fibro and CFS . Try to keep your head up. I know its hard. But we are all in this together.
I am sorry to hear that you have to deal with these problems as well. I think that is the worst thing- people think that you are really being lazy!! Or they think are faking or pretending... who pretends to hurt like this?!?!? Who in their right mind would want to be looked at as if they were a liar or crazy or simply lazy??!??! It makes no sense to me... the more I hear of you guys hurting like i do, it makes me wonder how ANY doctor can actually look at us and say the things they say and do the things they do.... it makes no sense... If i were a doctor, i would want to help people! I would want to go over every symptom over and over again until i could really truly help them and figure out what will work for them... why can't i find a doctor like that??? why can't we all find a doc like that?
do you have a good doctor? were you able to find something that helps? You said that yiou have hurt since you were 7... i am so sorry... honestly i am..... keep praying... i do... and i look into my childs eyes everyday and i find a reason to get back up and keep fighting this battle... bc no one else is going to help us... we are going to have to keep fighting and searching ourselves
I think doctors are useless. Its actually pretty funny because I think patients know more then the doctors at time and that is what gets the back up of many doctors.
I have had no choice but to do my own research and find the right doctors etc etc because if I didnt I probably would have committed suicide a long time ago.
They make you feel like a piece of crap. Its hard when your own doctor does not believe you. I have switched to so many different doctors, actually I cant even remember them all there were that many. So half of my records are probably lost some where.
FMS and CFS suck I hate it and it has taken over my life.
I could write a book about my journey in life.
emmy: I am there with you on having problems since childhood. I have never been well. I have always suffered from headaches and body pain as long as i can remember. I feel like I am 80.
I agree with you! Patients do know more... in some ways I think it is because we live it EVERYDAY... A doctor can never actually understand the pain we deal with... They have never had to deal with pain that is unexplainable and does not ever go away.... One doctor actually told me that because I am having a lot of trouble working out during the winter that it is my fault i hurt because ppl with fms HAVE TO HELP THEMSELVES....... Seriously... I just feel lost... my own boyfriend doesn't even understand it... he tells me its in my head... somedays i really wonder if it is worth the pain to continue on... but my child reminds me... he is my reason for keeping on going when I don't feel that I can.... ;As you said this stuff simply and utterly *****..
Im in a glum mood tonight... I tried to go shopping with my aunt, cousin, and my mom... i'm exhausted and I hurt all over... wanna sleep but can't bc i hurt... and honestly I am soooooooo tired of living like this...
Somethings gotta give... I wish I knew of ONE good doctor in ohio... I would travel where ever... I just want one doctor who wants to help me, who believes me, and who is seriously interested in what is happening in my body....
My illness has chased off friends and some family my teen is all I really have left, and that is becuase I never let her know just how bad I really am. When she comes home from college dorms on the weekends I make sure I have saved up all my eneries for her, and when she goes to work I am flat out again, its not a normal way to live I cant even get in the holiday spirit!! SAD!
Its funny how the things that people say can hurt so bad. My sister once told me that I ruined our whole family with all my so called health issues. From that day forward I cut her off and I dont make any efforts talking to her.
Now that she has had her child she has problems of her own and I really dont care.
I know thats bad because I am not that type of person but what was said by her at many occasions cut through my heart.
I dont think that there is one person that I know that can understand what I am going through.
Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin J. Starlanyl and Mary Ellen Copeland (Jun 30, 2001)
It seems like I have suffered most of my 63 years with CMP. An auto accident in 1996 pushed me over the edge with (undiagnosed) fibromyalgia. I went through every test and treatment before I got pro-active. My daughter brought me the above book (along with Starlanyl's other 2) in 2003 and it really helped me sort out what was going on. I remember that I was seeing a physician for my symptoms and he sort of shined me on. Then about a year later (I STILL hadn't fired him, silly me) he pokes around at my collar bones and says, "Why, you have fibromyalgia!" that was 2005 and he prescribed Cymbalta and Lyrica. You've got to figure than these docs who got out of school b4 anything was known about the syndrome are going to have a slower learning curve.
Fortunately, I changed docs and got one who understands that I have thoroughly researched my symptoms and conditions and am coming for a professional opinion and cooperation. We work together. She was a little shocked the first time I requested medical marijuana authorization, but I gave her a CD full of research on the effect of THC on muscle spasm and now she just adds authorization renewal to my yearly check up. I completely believe in educating doctors. This really is how medicine works today. You have to be able to tell them what is going on inside. In the 90's I had a team of 7 doctors treating me! Nobody had any answers and none of their prescribed treatments worked. The ones who helped most were a psychologist (who offered biofeedback to help me deal with chronic pain) and the rheumagologist who explained that some people have trigger points and some don't (CMP) and who referred me to the above psychologist.
What I have learned is that I have to treat myself if I want to live. If I lay around I will once again become unable to walk and that creates all sorts of other medical problems (heart, lungs, digestive) that I don't want. Being active, moving the blood around, is the best thing for me. I have horses now and getting up to feed them everyday in the snow and ice is a challenge, but it gets me out of bed when nothing else could. I doesn't matter how much I hurt or how tired I am, if I can just get out and take care of their needs my day will be a success. The bonus is that I usually stay up and do so much more that the pain goes away (if you have chronic pain,you will understand this phenomenon.) I remember the bad doc mentioned above saying I couldn't be disabled if I had horses. More stupidity!
I try to keep pain meds to a minimum but in this cold season when all the other aches and pains kick in on top of the fibro I find that I usually use 1 vicodine before the day is over. . .In summer when the days are longer (I live in the NW) I take a nap midday and can get by w/o that except for flares. I know about the kick-back of narcotic pain meds (make you hurt more when they wear off than you did before taking) and so I walk a fine line of not being dependent on them, but also staying ahead of the pain (and avoiding the ER!)
I have to admit that i am just sick and tired of being sick and tired.... I think I am starting to become depressed and I have fought and fought to not be depressed... but i am getting sadder and sadder.... i am unsure what to do anymore the will in me to fight this disease is slowly dwindling away... my child makes me realize that i have to keep fighting.. but at times i wonder if he would be better off without me.... i'm tired of livin like this... i'm tired of doctors not believing me and i'm really really tired of being in pain
OMG! I can relate to some of this, because I went to an urgent care clinic ONCE. I was so demeaned and dismissed and the "doctor" wouldn't even let me finish my question. Get this, I am one of the few who is very intolerant to the narcotic pain meds that so many of the other FMS/CFS patients use because of the severe pain they're in. I am also intolerant to Tylenol. I can only use NSAIDS and I can't take those all the time because I'll get rebound headaches from the migraine disorder and I have gastritis and GERD. And, many of us do have the GERD to go along with the IBS.
That urgent care doctor insulted me so badly that I refuse to go back to the place. She talked down to me when I was only asking if there was something else that can be used for pain that was NOT in the narcotic family. Before I was even finished speaking, she dismissed me as if I was a drug seeker, as you all have been mistreated. The woman wouldn't even let me finish. What's the matter with this person anyway? Isn't it clear that I am NOT looking for the stuff that others are looking for when I'm trying to tell this woman I CAN'T tolerate the stuff in the first place? She had the nerve to dismiss me and insult me and say that she WON'T get involved with anyone's "pain management". Believe me, the tone she used was insulting, demeaning, demoralizing and accusatory. I was only asking for information for God's sake! If the woman didn't want to write a prescription for it because of the type of clinic that is and how close it is to a meth clinic in my area, I would've been fine with that. I was just asking for information.
Okay, so there really isn't anything else. Tramadol isn't a narcotic, but I'm definitely allergic to it and it really isn't effective on the FMS pain I have. A lot of FMS patients say the same thing about it not really being effective.
I so feel for you, because I have FMS pain all the time and I'm unable to even treat the pain at all. Yesterday evening all I could do is try to divert my mind off the pain, but I was still unable to entirely because the pain was especially bad. I was intentionally playing a game on the computer to take my attention off myself. That's so tricky with the brain fog and the migraine I had, too. I was pretty miserable and couldn't really do anything about the migraine either. Treating the acute migraines too much and too often can make the problem worse. All I could do is take the nausea medication to reduce the nausea and nothing more. The pain comes in waves and will still make me wince from the piques in the waves. Even the neurologist treats me with much more respect than that arrogant urgent care doctor did. I get my SSRI from him, and being that I'm sensitive to stuff, I don't want to take a higher dose or an additional SSRI. SSRI's are supposed to help some with pain of FMS and migraines. I have yet to experience any evidence of this, but we've almost all been down that pathway, too.
Yeah, to be treated like a drug seeking drug addict ***** big time. I'll go clear across town to my PCP before I step foot in the urgent care clinic ever again. At least she knows me very well and won't dismiss me like that and knows I can't tolerate the usual narcotics. She will be sympathetic and at least be a good listener and not dismissive and insulting. It just didn't make sense to me to be mistreated like that at the urgent care clinic (I had gone in for something else and wasn't treated much better for what I went in for either.) when I clearly stated that I am allergic to narcotics and I'm allergic to Tylenol and I'm allergic to Tramadol. I wasn't even finished speaking before she cut me off and talked down to me as if I'm a drug seeking meth head! I hate the arrogance of some of these "doctors"!
So were you out of medication? Reading the post it sounded you ran out before the 19th, so that is probably what triggered your doctor's response. I am not saying he was right, but that was probably what did it. You told him you were not out, but you told the nurse you needed the refills (which to them means your out) & you admitted that sometimes you take an extra one. So technically you lied to him, I wish you could have explained to him that the 4 he prescribes is not doing the job of controlling your pain.
Regular PCP doctor's won't handle long chronic pain patients, most of them due to the strict FDA laws that have them walking a thin line. A pain clinic is really what you need along with an understanding doctor. If you have fibro trying to stay active is VERY important. It may be to cold to go for a walk, but do something inside if you can.
Urgent care clinics are exactly that "urgent needs", you won't get much help if your there for chronic pain.
Most of this is not what you wanted to hear, but it is what it is. The fakers make it impossible for the legit ones to get any kind of help. Don't give up, you must take control of your pain because in reality, no one else will do it or cares or understands.
No I wasnt out. I was due for a refill on the 17th; I went to the doctor on the 15th. My son had a doctor app that same day and his doctor is right down the street from mine. I live in ohio so it gets very icy in the winter and i prefer not to take my son out more than i have to. I did explain to him that I did not think that the meds were working as well...., which is when he went off on his little tirade about how i must be out and blah blah blah... honestly im just sick of doctors. Anyone who takes medication on a regular basis and who has severe pain gets their meds filled atleast a day before they are going to run out. Also, i said I do take an extra one if I HAVE TO; however, if I don't need the 4 that day, I WILL NOT TAKE 4...
Also I realize that I have to stay active; however, it is very difficult for me with the cold weather. I try to still walk, but by the time I am done my body hurts so bad that I end up in bed for the next day.... so how is that helping? Really? At least in the house I can clean and move around as much as possible.
My biggest problem is that it is NOT my fault that there are ppl out there who fake... therefore, I am not going to pay for the things that they do. Doctors should not judge every single patient because of what other patients do. Its simple: Doctors either want to help ppl or they want to judge them and not do what they went to school to do which is to help ppl.
I realize that most doctors don't take on chronic pain patients; however, I told him my situation before I ever took him on as a doctor. He knew everything, i had every file sent over to him; therefore, if he didn't want to deal with it he should have never told me he would.
I am not trying to be rude, but there is NO EXCUSE for these doctors. Period. You either do your job or you don't, just like in every other profession.
I know exactly how you feel!!I am now going through a similar problem!My Family Doctor of 30 years passed away last year and he placed a doctor in his practice to take care of his patients well guess what I went to the doctors appointment yesterday and he now tells me..Well now after this visit he will no longer be giving me pain meds!!!!!!I fought for years against going on pain meds with my family doctor we tried them all before i finally gave in and started on perks.I do NOT abuse them i take 4 a day and like you sometimes i need an extra especially with all the snow we have had this year!My Family doctor and i had tried for many years to get my pain under control and now that it is and he is gone this new doctor i think does not believe in FMS He is rude talks down to me like i am second class I do NOT like living with having to take meds but it was a last resort and yet this new doctor doesn't even take the time to read my file and see the years i suffered in pain and took nothing at all!!!!I finally had gotten to a point in my life that i do not spend my day in bed crying and now it will all go back to a point that saw me quit a good job in the automotive industry ,constant pain and thoughts of suicide!!I give up!!!
I am just in the saddest awe to see how many people are in the same mess I am in. It really is sad. I am a 32 year old female. I have had this since childhood. I was told it was growing pains back when and have been checked for arthritis, RLS, etc. I'm sure you all know the years of false diagnosis. Utter was a few years ago that I was diagnosed with fibromyalgia. At first, I thought...Yea! The newest disorder to be diagnosed with....having no faith that it was what I had anymore than growing pains was accurate. However, after years of research and reading others stories, these strangers are describing my life perfectly, so at last I finally know what is wrong with me. I also have IBS and insomnia. Then this past January, my situation worsened when i lost my Dr. Get this! My husband and I along with my 2 children have been using this Dr. for 7 YEARS. I took Tramadol and lortab daily for years along with other meds like Klonopin and blood pressure meds. My Dr. Started going to school and only took appointments before lunch. The latest appointment I could get was 11am and you had to book it a month in advance. Mornings and nights are my worst time and I missed an appointment twice in the last year because I woke up in such a mess, I could not make myself get out of bed to go. Then with no warning, I got 3 letters certified mail. One for me...one for my husband and one addressed to the parents of my children saying that we had been "non compliant " and could no longer be patients. I could not believe it. I thought I had a decent Dr. I called to ask what we had done thinking it had to be a mistake. I was givrm a list of 10+ reasons that are considered non compliant....mostly drug use issues but we don't use anything except what the Dr. Prescribed. We don't even smoke or drink....ever! Nothing bad at all! Try to find a new Dr. That treats chronic pain....None treat chronic pain in new patients!!! NONE!!! So what do we do? I even tred a Dr. Group that talks on the news about fibromyalgia. I drove an hour and a half to little Rock for this Dr. Just to get told when I was there that she treats fibromyalgia patients but never with narcotics...only with herbal medicine. I know my teeth hit the floor. If herbal meds worked, I would use them. I don't like the idea of killing my liver with narcotics, but nothing else helps. Believe me, I have tried EVERYTHING! !! massage, chiropractor, vitamin therapy and every pill u can think of...rx or OTC. Even a few old wives remedies. The drug abusers of the world habeas ruined everything. I also tried a pain clinic that i drove an hour to Batesville, AR and was treated so rudely by that Dr. I don't know how she keeps patients. Actually, I do know....we are so desperate for pain relief that we have to suck it up and they can treat us anyway they want because it is the only way to get any help....that is IF you find a Dr. That will even treat you. I have been in a mess for months....try loosing all your meds cold turkey after years of taking them. It is not fun! And i certainly understand every statement made here about the lack of care from a Dr. What happened to "First, Do no harm" They must have changed it to " First, Do nothing!" good luck to u all!
I've had this disease for many years now myself, and I know what you all are speaking of. My only additional comment to all of this is that I believe that the non-treatment of chronic pain is a modern holocaust. The only job of the medical profession is to reduce or eliminate pain. They do not do this as a result of pernicious laws restricting effective drugs or other treatments. This has to end, there has to be a revolution in thinking here.
I was first diagnosed with Fibromyalgia in 1996...but it really wasn't that bad at that time and I just brushed it off. It did explain my fatigue and pain issues, but I was young and I was going to fight this. Well, in 2002 I was involved in a near death accident (I hit a guard rail head on at 60 mph) This was when my problems really began. I had a doctor that did treat my condition but then left the practice. I eventually found a doctor that I really liked and we really got a good doctor patinet relationship...I began seeing her in 2003 and until this year I had seen this doctor a few times a year and of course when I was in attack. This week I scheduled an appointment with her and when I arrived at the appointment they wouldnt see me they didn't take my insurance. I was willing to pay cash for the visit and they still wouldn't see me. I have GREAT insurance so I don't know what there issue was anyways. I was forced to find another doctor which is next to impossible to find a doctor that will treat fibromyaligia. I found one and I think I really like her. She has new ideas to help me which I would be so grateful for. I just had a gastric bypass surgery and have already lost 80 pounds in the past 3 months so I am more active, but that can cause me to overdo things and send me into an attack.
I hate to say this, but welcome to our world. I think at some time everyone has gone through this. You need a Dr. that specializes in Fibro. Everytime I call for a new Dr. I make sure he has a lot of fibro patients and lots of knowledge on fibro. I've been through so many dear,kimmi. My heart goes out to you. Killing your self is not the way to solve it. that would bring on many more problems especially for your child. You are wrapped up in how you are hurting physically and mentally right now, but don't forget the feelings of your family. I thought of this many times also, my dear. "they'de be better off without me". But, they won't. They would have guilt the rest of their lives and wonder what they should have done to save you. And on behalf of God, He doesn't want you to do this. He has a plan for you and you really don't want to mess up His plans!!! Take something for depression and if that doen't work, try something else until you get a handle on your depression. Then you will be able to think about what you want to do about these Dr;s. Pray for a Dr.to come into your life that will not only be knowledgabe but will be understanding and empathetic.
Good look Kimmi and many blessings to you. You are worth it!!!!! Blossom2512
I just had a nasty experience w/ a first time appointment w/ a physician and she had the nerve to tell me that she doesn't believe in FM and said it just means I'm severely depressed and that I need to see a physiologist and be examined. She told me my symptoms that I have are all in my head. However, I was being treated for my FM from a pain specialist, neurologist, rhumatologist, and going to a physical therapist until I lost my health insurance because I was no longer fit for duty and was forced to resign from my job so I have been struggling to find a doctor to help me from the wonderful free medical health program that Virgina has to offer.
I 100% understand where you are coming from, and most of these "doctors" and/or "neurologists" are plain and simple full of crap and have NO IDEA what they are talking about. (Not like they've ever had to suffer with this kind of pain on a daily basis..)
And if I remember correctly you mentioned something about how you're doctors weren't taking you seriously because of your age and they didn't believe someone that young could suffer that much pain - my suggestion, go online, it's easier to find but I'm sure books could work too, and find cases and information about what I believe is called Junior Fibromyaligia - or at least something similar. And that can occurr in people as young as 3 to 5. You stick the research in his face there's no way ANY doctor can argue with you.. It's the only way I got my first doctor to listen.. I hope it works for you too.
Turns out when I was 14 or 15 a friend had picked me up ran around the gymnasium at school with me (It was someone I fully trusted so I thought nothing of it.) and as we were 3 steps away from the 'finish line' he threw me up to try to get a better catch on me and ACCIDENTALLY missed. Needless to say I came crashing down on the wooden floor, was knocked unconscious, and bruised several bones. And of course anyone that knows anything about Fibro most likely knows that it's usually started because of a traumatic/ physical event. Now of course I'd never had even a hint of it before (Although my mother, who also has it along with several of her sisters, had been keeping track of a book of my symptoms and the more she read and recorded the more she didn't like what she found. Later to find out that I'm practically her exact medical replica in most cases.) however, after the accident in the gym the Fibro slowly started to ruin my life as I'm sure it has others. I barely even graduated High School because I was out so many days simply because I just couldn't get out of bed 'cause I was in SOOO much pain. Granted the pain had lessened for a little while, I am now 21, turning 22 in a couple months, an am now without ANY help from any doctor at all because the last one that was REALLY, REALLY good at helping me let his secretary get away with not doing her job fully and discriminating against me. (She made up several excuses so that the doctor would refuse to see me again..) GRR. And to make matters worse, they dropped me two weeks before the holidays, making it IMPOSSIBLE to find a new doctor to help me then! Not to mention him/ them telling me that they were ripping me off my narcotics was a whole other big problem.
I'd even gotten desperate enough to try the doctor that my [now] ex-boyfriend had recommended. I don't know what he told that doctor (Most likely he gave him all MY symptoms, among other horrible untrue comments - jerk.) Cause once when I went in there, I'd even brought my mother in with me to validate everything I said also in case I forgot something that she didn't, as well as at least a 20-35 pg. packet of all the lists of meds I've been on, who prescribed 'em and when they were given, making it very simple for him - this doctor, who's ranked #8 in the state (How - I'll *NEVER* understand. Especially after telling me it was all in my head, lying to my face about what kinds of meds he prescribes, and how he thought me seeing a therapist would cure it all. Yea, he couldn't even bother to GLANCE at the list. Well gee, I'm sorry, but if it's all in our heads, than why on earth would we have to see a rheumatologist to get the final diagnosis?? A call that I was told that any other doctor requires him (or her) to make.. I don't know about you guys but it certainly doesn't make much sense to me, lol.) He assumed my crying my eyes out in agony was just pure depression or something a lot like it. B.S.!! Of course the rain and the cold makes it worse!
[He just wanted to keep putting me on the same meds that had already landed me in the ER a few nights before due to bad reactions to the new medications. Not that he could be bothered to listen.]
Since then I've absolutely refused to go back and deal with that - [In an effort to be polite..] quack; that jerk; that damn phony.
Months later I've been through just about every neurologist in the Middlesex book, but finding a doctor that will take a 21/ 22 yr old seriously in my condition and *HOPEFULLY* give me my meds back so I can get on with my life before it's too late...
I don't know.. Any suggestions?? Any help would be appreciated..
Hell, after all, is it really such a bad thing to want to be constantly treated like a guinea pig; tried on drug after drug, taking test after test - last I checked that's nowhere near living...
Regardless - best wishes to all and I hope things pan out well for each of you.
Goodness :( I can completely empathize with you. Right down to the "THIS IS MY LIFE.... If it wasn't for my son I would seriously give up and shoot myself... But I can't because he needs a mommy and he is my whole world... he is the reason I fight everyday to get up and keep going.... " comment. I was diagnosed when I was 22 with Fibro and was prescribed over 25 pills a day. I took them for about 3 or 4 months and didn't get any relief so I took myself off all meds and gave up. I convinced myself I didn't have Fibro and if I did the meds would've helped. I went literally for years until I was 34 to go to a doctor again for the pain becaue it had gotten so much worse. Now I have so many problems it's insane. Now I get to deal with feeling like doctors don't believe I'm in the pain I'm in and doctors who just don't get it. I have been told so many times this or that is in my head and I need to see a Psychiatrist. Of sourse I've also been able to prove those doctors wrong everytime with tests. More randon symptoms found, lesions, bone degeneration, severe deficiencies, etc... Not that that makes them do anything about it other than tell me I should still go to a psychiatrist for my depression and anxiety. They just have to accept that maybe I do feel pain in those areas. I have so many stomach problems that the last thing I want is more meds so I started going to a therapist to help me deal with how hard life has gotten. As everyone here knows, you lose so much it's almost impossible to deal with and understand by yourself. So my therapist recently ordered a sleep study for me and I am going to the neurosurgeon today with proof I am in pain even when I sleep. Otherwise the leg that I've been complaining about since the get go would not of moved 90 times. It was also discovered that I am only getting about half the stage 3/4 sleep I should be getting which is the restorative stage for your body. No wonder is the way I look at it. If my body isn't healing at night from the damage I did to the day prior and this has been going on for years then I'm hoping it will be very obvious to my neurosurgeon something needs to be done. So just a suggestion but if you can get a sleep study done then you may have proof you need the doctors can't ignore. After all, we don't consciously control our bodies when we sleep.
I am a longtime fibro person. My doc in Seattle area kept telling me cold was really affecting me. i moved to south, and it does help tremendously. I could hear the panic in your words, and I've been there, over the edge. Life is not easy, no matter where you are with fibro, but it is so unbearable when you add cold. My husband had hot skin, and liked really cold air conditioning. Now I'm on my own. Life is hard, but I'm not cold, and it is better for fibro.
Hi, I know how you feel, I was diagnosed when I was 16 and I am now 54. I had severe pain across my chest and my shoulders and arms at 16 and a specialist told me that some drs believe that fibrositis (as it was called then) is real and others dont, and luckily he was a believer. But I cant remember what he did for me. I have had pain in different areas all these years and in the last 2 years it has spread allover but my legs are unbearable. I am lucky that my current Dr gives me oxycontin and endone (morphine). I take 40mg oxy morning and night and top it up with the endone, but i still get so much pain and i get very little sleep and migrains and bad tinnitis in my ears. I also take dothep, a low dose antidepresant that helps with the oxy. I dont know why drs dont believe his condition exists. Why would so many complete strangers have the same symptoms??? I am scared my dr will retire and i wont get my meds from anyone else. Then I will probably just shoot myself. Take care everyone.
OMG K immie and all of you. How sad we all feel the same way and have all had thoughts of suicide from this disease. They call it a syndrome but it has taken over our lives. I am 45 and live in he St. Louis area. No docs want to take new fibro patients and the rhuematologists don't even return phone calls when they hear you have fibro. My best bet for pain management has been my nuerologist but they are in trouble with the feds for giving to much pain meds. Something has got to be done. I hope Kimmie that by hearing others talk about their issues with fibro that you feel you are not alone. Do you see a chiro? I have a very good one and this helps alot but still have to take loads of pain meds, anti-inflams and take gabapentin for the fibro. I have alot of short term memory loss from the gabapentin but it's much better than the swelling I got from Lyrica. Good luck and tanks to everyone for sharing their feelings.
I have "self-diagnosed" w/ fibro. I also fear and loathe FKIA dr.s and their tx of humans. And I have no insurance. I have been self-medicating w/ OTC like tylenol etc. I also use trigger point massage, accupunture and accupressure to reduce pain symptoms. Meditating and self-hypnosis at night so I can sleep w/o overuse of my OTC drugs. but I'm afraid it is getting worse.
I am so sorry I have had problems too funny thing just getting anti inflammatorys that are right for me, they took me off an told me to take more vics lol now I signed a pain plan they wanna take low dose of those away, I heard sevella is good for fibromaybe try that? But you know your body: ( an how can a Dr know if we are not doing excise inside; ) bad I guess but they seem stuck an true a gentle workout is good so u don't get stiff, yet I don't blame u I hate being cold don't give up get a new Dr I am trying acupunctnture right now ,I miss me too I think all of us in crohnic pain do don't ever give up, just think we have changed but we will be stronger more compassionait more beautiful: ) it's just a big hurdle to jump
I am so sorry that everyone here is having probs. with the doctors. I think part of the problem with doctors is that the feds are now prosecuting doctors for prescribing too much narcotic pain medicine. In my state my old pain doctor is charged with 8 counts of manslaughter for pres ribing narcotics to people who later overdosed on them. Its sad but I don't think its his fault. He is not allowed to practice now. And he was one of the nice ones. There is no excuse for being rude to patients!!! I know doctors shouldn't judge everyone the same but narcotic pain meds are the #1 abused drug right now. Not that I'm saying you are. Its an unfortunate situation for everybody. Good luck in finding better treatments.
I am so amazed and angry about all of you having the same trouble I am with doctors. I have been hurting for many years and never knew what it was..I had been seeing the same doctor since 1994,so it took me many years to get to where I was with pain meds with him. In 2010 I was diagnosed with systemic lupus,and fibromyalgia. My doctor finally moved me up to Oxy because it didn't contain the Tylenol. I am on methotrexate also so I have to worry about that destroying my liver along with the lupus. Don't need any extra help from Tylenol. Well last July my dr. Had to take me off Oxy and put me on tramadol because a bunch of teenagers at the local high school got ahold of there parents meds and had a lot of overdosing..nothing fatal. Tramadol does not work on my joint pain and muscle pain. Why do I have to suffer because other people can't keep their meds locked up!! I switched doctors then, and now this new doctor doesn't believe I have lupus so he won't give me anything but tramadol,which I have been telling him it ISN'T working. I am at my wits end. I have all documentation to prove my lupus but he just doesn't care. What do I do? I don't want to go to another doctor. I am scared they will think I am doctor shopping,that is the last thing I need. Any suggestions??
I have had this pain since I could remember. It was so stressful that every time I went into the doctor my blood pressure would go up, and of course they would worry about that. Doctor experience such a control complex that if they don't know what is causing something they immediately think it is fake. It has taken me over 3 decades to find things that help. I would suggest trying acupuncture and massage therapy (it can hurt during the massage, but afterwards it felt better). There will always be days where nothing seems to help. Meditation has also helped me "feel" the pain but separate mentally from it.
I hope knowing you are not alone makes things a little better.
Hello everyone.... I have had Fibromyalgia since I was a teenager. My grandmother would massage my legs and arms with Witch Hazel and Volcanic oil. Sometimes I would take an aspirin (1950's).
Well, I was finally diagnosed after trying to ride a stationary bike - I couldn't get out of bed the next day. I was all bent over like a little old lady. The doctors gave me some pain meds and sent me home. From then on, I had trouble getting out of bed - I was in so much pain, I would pull myself to the edge of the bed and fall on my knees then slowly and painfully pull myself up.
After so many years of trying so many things I found that Ibuprofen did nothing for me. I quit taking Tylenol as my liver has been damaged - so I did some research and found ESSIAC. It has helped me so much that when I saw my orthopedist (I have DDD), she couldn't believe I was walking! I have since added other supplements that have helped me with the pain and stiffness, but Essiac is my most essential.
Most of the time I have what I call "normal" pain. I am never completely pain free, but I'll settle for a 3 or 4. Much better than a 10! For really bad days I will take a Naproxen - but since I believe more in natural healing, I rarely take any anymore. Some days I take Apis Malefica (made from bees and their venom). It seems to help.
Winter is the worst... can't stand to be cold - so I use an electric blanket and if I have to go out, I wear boots and a hat for sure. If your feet and head are warm you can tolerate the cold better.
I was very fortunate that my doctors are so understanding and supportive. I don't take opiates or heavy duty drugs, so I guess that lets them off the hook. They do prescribe Zoloft for me - I don't take it everyday - I meditate on the Bible and pray a lot.
I am so sorry that you have had such a bad experience with your doctors.
That is so sad. - I am very grateful that when I went before the judge for SSI, he was very understanding and granted me the help I needed. I was very weak and in a lot of pain that day and could hardly stand.
Get documentation from every doctor you have seen now. It will be very important for the day you try to get SSI or Social Security. Yes, even the "crappy" doctors. This will show the judge that you have tried very hard to get the help you needed.
I hope that you will try some home remedies - Sepia, Apis, Essiac, Calcium and Magnesium, Potassium, D3, and Fish oil with Omega 3.
These are the ones I take and altho I am not pain free, I don't have the really bad flares any more.
Stomach issues are the worst for me. Had a CT scan last week and am waiting for the results. BTW - I am now taking Dexilant (supposed to be better than Nexium) and it is helping a lot.
No you are not whining, you are not weak, you are not a nuisance to any
physician and if he/she does not know enough about this disease he/she should not be a physician.The last thing a Fibromyalgia patient needs is a
physician who does not understand or is unwilling to learn about this strange disease that is mostly to be found in female patients. Would there be more attention paid to it if males were in the majority? I wonder......
Seven years ago we moved to the Azores, Sao Miguel, for our retirement. At the time little did I expect to come down with a disease I had never even heard about. One day my husband and I were taking a walk on the promenade when I felt a sharp pain in my left foot and it began to swell.
By the time I got home the other leg was swollen as well and I began to
feel the very typical pain in my muscles and joints I had never experienced before. I consulted my female family physician who is wonderful and being
in Portugal I am lucky because you don't get shoved out the door within 5 minutes. No, she sat down with me and she asked me many questions, referred me to a physician whose specialty are lymph-nodes and after his
examination he told me that there was nothing he could do for me but not
to give up, he suspected that there was an underlying cause that was the
root of my pain. Back to my family physician she sent me for blood-tests
targeting arthosis, Rheumatoid Arthritis, MS, Lupus and other causes to narrow down where the pain, the stiffness and the memory loss was
coming from. After I brought her all the results which excluded all other diseases she asked me to lie down and she pushed the typical trigger points all patients with Fibromyalgia share. I almost went through the roof with pain.So she asked me to sit down and explained in detail what to expect and how she could help me but also how I could help myself. I am an author and I would have to limit my time on the PC. She suggested 30 minutes off and 30 minutes on the PC. In total she wants me to rest at least 50% of the day and by resting she excludes reading or watching TV. The brain where this disease starts (and I believe it started actually sooner than that afternoon I could no longer walk, needs rest as well, so from the sofa of our Living Rooom I watch the wonderful clouds pass, the ocean and our balcony has been transformed into a sweet little garden arranged around the painting of a "heart-flower" done by a friend of ours who is a wonderful artist. Some medication was increased and some added, this physician is really a wonderfully compassionate woman who looked at me sadly and told me the truth, it would never get better, only worse and to live each day to the best of my ability. No walking longer than 20 minutes (I used to love to hike) no house-work (that suits me well, my husband has taken over a large amount of the cooking and we are able to afford a cleaning woman here who has become part of what I call my family. I can always depend on her as well as other friends who truly understand that I am not a whiner or like to complain, that I can't even sit long enough any more through a two hour concert and when we go for dinner my time is limited.My physician told me specifically that I had to sort through my friends slowly and see who was understanding of my plight and those who were not, because I would have to drop those from my friend list. By that time she could clearly see how I was loosing my balance, and that from now on my life would change entirely. More symptoms started to appear and she gave me a referral to the pain-management unit and Dr. Teresa Lima who was instrumental in setting-up this program in Portugal and all chronic diseases are treated for free (YES I WROTE FREE) Her technical staff is wonderfully kind and every month I have a date with the pain-management unit and Dr. Lima to pick-up my medication and check on me. One of the things which are so baffling about this disease is that it does not show on the outside. If you go on my website
that is exactly what I look like at age 66. Six years ago I was swimming with the dolphins still, now I can only venture into the ocean to ride the waves with a floating device, "my spaghetti" but it works. Of course the
resting and limited mobility as well as the medications caused a weight gain but I can live with that. What I find increasingly difficult is that in the midst of a conversation suddenly there is a blank and I forgot the word I
was going to say. I remember after a short time but I have to keep a note
book now for important dates and my memory which was so sharp now
leaves a lot to be desired. Just recently another symptom showed up. I perspire a lot and when I entered "excess perspiration in women over 65"
there it was - google told me that this as well was a symptom of Fibromyalgia. The Fibro-fog is annoying at best and without my good sense sense of humor I would be lost. Living and coping with this disease
is the most difficult thing I ever had to do. I have written two more books and am working on my sixth book plus I publish articles but I had to give-up pro-bono teaching of English conversation. I do count myself very fortunate because we live only minutes from the indoor swimming pool that
has the right temperature for my disease (and glorious views) and that there I also met my wonderful physical therapist who works on me twice a week. Sometimes in the water, sometimes on the massage table. Never
force yourself, the red line of overdoing and making your condition worse is very thin and you know immediately when you have overdone it. The pool
at 30 degrees Celsius is my salvation, I can do everything in the water that I can no longer do on terra firma. A set of exercises depending on how I feel that given day is being followed and some free-style slow swimming
is done just for experiencing the lightness of being. I am very fortunate to
have ended-up in a place like Sao Miguel where stress-levels are very low if at all, the quality of live is wonderful and the windows of our condo all
face the ocean. As far as diet goes I eat a lot of fresh fruit and vegetables
which are available all year due to three harvests per year and a sub-tropical climate good for me as well. The town of Furnas (45 minute drive) had active caldeiras and a huge thermal pool where the water is
loaded with minerals and you can swim year-round. Sometimes I don't
rest enough and then I pay the price the next day. Some friends had to be
cut yet others have taken their place and now I am going back to bed
because I am not having a good day today at all. Dr. P. told me the last time to swim as much as possible and become like a fish while another physician present and in training wondered if there was a way I could write
under water. I don't believe there is but I try to make the best of every day which is no easy feat. My heart goes out to the women and men who get
this disease early on in life, it is a difficult road but find out what agrees with you best and do try the hydro-gymnastic as well as physical therapy.
While our muscles are contracting it is up to us to stretch them again.
Dr. Teresa Lima, the pain-specialist has taken me to seminars on chronic illnesses putting my photo up on the screen and asking the audience if this woman was sick. "NO WAY" a chorus shouted. Then she asked me to
come to her and explain in my limited Portuguese how I cope. To think that
the little country of Portugal and the autonomous region of the Acores can
accept this disease and be very focussed on it while in the USA many
physicians simply dismiss it as imaginary is difficult for me to understand.
Hang in there all you co-suffering victims of Fibromyalgia - just think, they could find a cure if they tried.
Wow, this is so true! It's really disgusting to see how dr.'s mostly just judge chronic pain sufferers of any kind. They sit on their self built thrown and look down on us and accuse of of lying, being addicted, and tell us that nothing is wrong, that we are just crazy. I've been having such a tough time lately in and out of the emergency room and they just don't want to help anymore. They think I'm crazy and that I'm just trying to get pain pills. I think I can speak for most people in this type of position, but we would give ANYTHING to never have to take a pain pill or any pill again, at least I would. Thank you for sharing your testimony. I've felt so alone and depressed wondering what is wrong with me... it at least helps to know that I am not alone.
God Bless, I pray that touches us all and helps the doctors to see their wrong doings!
A sleep study test will prove chronic pain. I have been dealing with this for over 15 years...about 10yrs. ago, I had a sleep study..because of insomnia that I KNEW was caused by pain. I never told this doctor I have severe pain because I didn't think he would believe me. He said to me do you know your in chronic pain and that's why you can't get into R.E.M. sleep. Wow...I thanked him and started smiling and then tears. Finally, someone really knows. It's because we look healthy for the most part. Pain management wanted me to go back to counseling...since I have PTSD. After being through years of counseling, therapy..I refused to go and keep digging up the past. Least to say I have not had any pain management for two years. I also have other issues due too tumor removed from my spine. People and doctors do not understand not a moment goes by without pain-day and night. I would request a sleep study...GOD Bless!
Kimmie, hang on..your child needs you as much as the air she/he breathes! Never put thoughts into your head like that. Since my children are grown I struggle with that-and then they call and need me. We need to just keep on-keeping on.....when you think that have your child read a book to ya (if their old enough)....instant smiles, guaranteed! GOD Bless, lisa
Your experience was much like mine. Except my Dr understood Fibro and was willing to try to treat & encouraged me to exercise when I could. I finally realized I must exercise. I started with a few minutes, every other day. I slowly increased exercise & felt encouraged. After 2 years of slowly increasing exercise, I began to feel more alive. I did finally regain my health and felt good for about 10 years. Then I had Total Knee Replacement Surgery. The pain from that was more than I had expected & I was stressed with the pain & trying to do the rehab exercises. My P.Therapist recognized I had fibro. I thought about it & realized I do. Now I am in a bind, I have cutback on rehab exercises because of fibro. Now my knee is not being rehab, &I I am back in the pain of Fibro, asking myself If I can possibly make that struggle again, and will it work a 2nd time.
I was diagnosed in 2006 at age 34 but thank God I had an understanding doctor. He referred me to the people I needed to see for my migraines, fibromyalgia, chronic pain, and etc.. I take Lyrica 75mg, Tramadol 300mg because nothing else worked, and Cymbalta 60mg for my fibro. Topamax 100mg, Elavil 10mg, and Fioricet 50-325-40mg for migraines. This helps but some days nothing works but the days I can enjoy are beautiful. I can say that walking in the morning does help ease the pain and you don't have to walk outside because I walk in my house plus I go to pool and physical therapy. Having the right doctor is very important and you definitely have to be your own advocate. Also, the right pharmacist is important as well because the doctor will right them and not tell you the correct way to take them so that your side effects as far as drowsy is limited. Good luck
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