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Fellow Sufferers

Jul 01, 2014 7:04 AM

Hi guys

I just want to say to all my fellow sufferers the following

You are not crazy
You are not lazy
You are not seeking attention
and you are not swinging the lead
you are ill.
Do not take on other people's negative and nasty thoughts
Do not add it to your stress level
Be nice to yourself!

Jul 01, 2014 12:30 PM

Well said. How much simpler to feel the pain is some imagined problem, easily wished or willed. Maybe because then it would be something controllable when everything feels so out of control.

Jul 02, 2014 10:49 AM

Am I alone in feeling my pain is ignored by my doctors? I feel abandoned by my doctor and left to linger in a state f constant pain.

Jul 02, 2014 5:02 PM

Not at all. Someone else may respond better, but what helped me keep my head was remembering that for all their education, experience and expertise, they are fallible and prone to bias like anyone else. Medicine isn't an exact science -though people act as it is -but some doctors make it out to be, and therefore their conclusion based on it to be gospel.
My point is, if I feel I'm being ignored by my doctor, I will look for another. I just need to be sure of my motives; I want to be sure I am trying to be heard and not have my own ideas validated.
It took a dozen appointments before the cardiologist, of them all, gave any hint of understanding what I've been going through. and this appointment was just to confirm my issue was noncardiac. Beefore this, the family doctor was only wild guessing, and the neurologist practically accused me of bringing on my symptoms myself.

Jul 02, 2014 8:45 PM

All I know is my pain and how it affects my life. If I look for another Dr then I look like a drug seeker. So far all tests are showing nothing. I'm so frustrated and at a breaking point. I just need some relief at this point

Jul 03, 2014 4:01 PM

I know what I would do in 'my' situation, but I tread more carefully in someone else. If you could share more specifically what you're dealing with it would help.

Jul 04, 2014 7:14 AM

I've been suffering from low back pain going back 17 years. After multiple ER visits I finally found a doctor that heard me. She put me on a low dose of pain meds and muscle relaxer combo....has worked fine. Then I had to move. My new Dr instantly cut my dose in half since she says its not a long term solution. My MRI showed nothing wrong( which I was afraid of). The end result with both doctors was I'm fat. Needles to say all meds are now cut off. Since going on meds I've lost 80lbs. Since dose was cut to nearly none I've gained 10lbs. I'm in constant pain and feel I'm getting the crap end because of the " epidemic" which I am fully aware of. I'm just at the end f my rope and feeling hopeless/helpless.

Jul 04, 2014 9:03 AM

I am 31 and have severe scoliosis. I had harrington rod surgery in 2000. I can't remember a time when I didn't feel pain. It overwhelms me constantly. I try my hardest not to rely on painkillers but when I do give in I feel so judged. Doctors tend to be useless, even the pharmasicts seem to judge. No one understands. Words cannot express the agony and frustrations. I would not wish this upon anyone but it's comforting to know I'm not alone.

Jul 04, 2014 3:33 PM

I am 44 and living with CFS, fybromyalgia, and now it seems, osteoarthritis, and a couple of herniated discs too! (Had MRI last week)

I suffered with recurrent pain and trapped nerve issues for 18 years before I eventually found a doctor that listens. They are out there, but seem to be few and far between sadly.

Unfortunately, because I was basically told 'your a hypochondriac' for so many years, I began to believe them, so (although I have a great Doctor now) I haven't been completely open with him, so when I finally collapsed last week, everyone panicked and couldn't get me in the MRI fast enough. Luckily it wasn't as bad as they feared, but I was given a good ear bashing about talking to my doctor!

The point of telling you this - 1. Its not in your head, and your not a hypochondriac (even if,like me you feel like one sometimes)
2. Keep looking for a good doctor that will listen
3. Talk to that doctor honestly!

Jul 04, 2014 6:42 PM

HannahH, thanks for the info.
As I said, I can only say what I would do, so...
First of all, if I'm I pain, discomfort or whatever, I'm the type who tends not to care about someone else's opinion, including physicians. What 'you' think has no bearing on how how I feel.
Second, this is about MY health, and that makes my doctor a passenger on this trip. I'll allow them to navigate, but never drive. In a similar way, if I know we need to turn left and someone insists right, it's time I get a new navigator and them a new ride. If my doctor wants to play dictator about how someone else feels, they can do it with someone else.
I do get a little incensed at the thought of doctors acting like know it alls at someone else's expense. I've read of too many people having to live in agony because some doctor feels their education trumps someone's experiences, only to be finally prove wrong all along in many cases.
I'm currently seeing a cardiologist, neurologist and the family practitioner, and have no interest in the opinion of any of them counter to what I'm feeling - and my neuro doc is on thin ice.
Anyway, if it were me, after having found a reasonable solution, finding a new doc come in and undo what was working for me, I'd be shopping/interviewing a new doc. I see as many as it took, and explain to every single one what I'd been going through, and a 'no hard feelings' to those who chose not to listen.
Lastly, having someone call me a hypochondriac is small potatoes to me in the long run. Please, please hear this part: it is not your job to sell your doctor on your illness, it is theirs to sell you on their solution. I have no idea how or when doctors (or any service provider, which is all they are) got so much power over those they serve in this country.
That's my 2cents, and nothing more.

Jul 04, 2014 10:02 PM

well first my friend, I do feel your pain I am someone who has had 2 surgery's of the lower lumbar "3,4, & 5" and now have to receive a 3rd because if a fall at work that ruptured my s1, so I do know a lot about this topic. I do have to ask, did you have an MRI showing a ruptured disk, or of nerve damage, and second you said in your blog above " it is not your job to sell your doctor on your illness, it is theirs to sell you on their solution." well I have to say, the doctors can only do and act on evidence of what they see through test results, like blood work, viewing MRI & X-rays , or visual evidence, like bruses, imbrastions of the skin, cuts, discoloration of the skin and so on. selling is not a doctors job or your job to convince them of what you want, a doctors oath that he or she takes starts and finishes with the words " and do no harm"
the way you explain your situation i question of what your are searching for. but good luck and hope your find what your looking for!!!

Jul 04, 2014 10:07 PM

well nice to here so many people out there that understand the same pain I suffer. I now am about to receive my 3rd surgery because of recent fall through a floor in the work place. I have been about 90% better in the past nine years? sense my second surgery of the 3,4 & 5 lower lumbar, after my last surgery pain was only a problem at times with some muscle back pain, cramps and a acuasanal nerve pain in my leg. but nothing that would effect me as much as I am feeling right now. but sense I fell through the floor, I now have ruptured my s1 and now feel as if I am stepping in a fire of hot coals all day with every step I take with my right foot. I have full confidence in my surgent, he and his team are the ones who preformed my last surgery nine years ago, and I am told because of age of "41" this injury very well could effect me later in life to the point of a forth procedure.
Hope all is well with my fellow suffers of siactica and may the rain, snow, and other low pressure weathers conditions avoid you.
Judson Kent

Jul 05, 2014 8:22 AM

I'm 35 and have been in chronic pain after two open chest surgeries and a low back fusion, just to mention a couple reasons for my pain. I also do not mind sharing I've been recovering for 7 years now. so I'm sure you can imagine how well it went over with the Drs when nothing other then pain meds helped my pain. I was treated horribly! I finally decided I needed to advocate for myself because I know I'm not med seeking and I have legit reasons for pain so I do not need to be treated like a second class citizen! so I did my research. Once I found a potential dr I literally "interviewed" him. I sent my records in advance and gave him a list of the questions I wanted to go over with him before I would accept him as my Dr. That was 2, almost 3 years ago now. He treats me as a person who suffers with pain. Not a drug seeking person who just complains of pain that probably is in her head. I cannot stress enough that we DESERVE to be treated with respect and to have our Dr include us as a TEAM member to help treat our pain!

Jul 05, 2014 1:49 PM

Hi Judson, your insight and experience are much appreciated. I hope I don't lose much in translation, but I know tone is difficult to convey in text; I tend to write and speak in matter-of-fact terms, that drives my wife insane. That said, I do stand by what I wrote in its context; diagnostic evidence or the lack thereof shouldn't/doesn't override the pain a person experiences. I didn't mean to imply that a doctor was expected to act contrary to what they observe, but neither should a patient with what they are feeling.
Within this community, I will take everyone at their word, and if their doctor cannot or will not help them, they need to find someone who will. I figure the person of ulterior motives doesn't really care about their health to begin with.
I'm borrowing from Jash79, when I couldn't remember the term, that there may be times that many of us will indeed have to advocate for ourselves. I want to believe that most people do this, and that only a small segment of people esteem their doctors advice to their own detriment when it opposes their genuine experiences. By analogy, I used the navigator, or perhaps a mechanic, who I will give more credibility in the care of my car, but not the ultimate decision making. How much more should this apply to my health?
Finally, with all respect, it IS the doctors job to sell me on their solution. They have the obligation to advise and explain any course or procedure they intend to take, to allay my fear, and answer my questions; and I have no obligation to follow any it. Conversely, if I am in pain, I defer to that fact that (for me the patient) ultimately this is about my health and not their impression.
Again, being aware of the perception of tone, I do hope my apology is received, for none was intended.

Jul 05, 2014 2:00 PM

My experience is dealing with syncope episodes over the last 18 months. After about 9 or 10, MIL insisted I see a doctor who referred me to a cardiologist. Initially, a stress test was done and a mobile monitor and a diagnosis of vasovagal syncope. In May, I had back to back episodes, but didn't recover as usually. The same week, I spiked a 102 and since then persistent muscular pain throughout my neck, back arms and legs, memory difficulty and lightheadedness. In order, I've had cranial CT and MRI, ECG, portable EEG, along with several others I was too out of it to remember. I'm on FMLA leave, and my only goal is to get back to work in the 12 weeks I have.

Jul 05, 2014 5:30 PM

This is a letter from a doctor to chronically ill patients. I think it explains a lot. http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

Jul 05, 2014 6:22 PM

Thank you, MSPiechowski. I for one will certainly take that with me when I am with my doctors. It helps to see there are two sides hoping not to be marginalized in the discussion.

Jul 05, 2014 8:04 PM

I find it very sad that there is a commonality in all of this that Doctors are not taking pain seriously. From most of what I have read here there seems to be specific incidents, accidents or conditions that have occurred in each case to generate pain. The failure of the medical profession to provide or in this case most GPs to understand, recognise and establish a management plan, is appaling! I use the term management because chronic prolonged pain is in most cases permanent and must be managed, it's not a simple treatment they would normally address say with antibiotics. I recently however encountered a well trained pain management specialist who's treatment plan was medication of ever increasing amounts, which whilst helpful, this further erodes quality of life, mental alertness and creates zombie states. This whilst an improvement on my initial encounter with the medical profession of having to breakdown at my GP to explain how unsupported I was feeling and that I needed medication to better manage my pain as my chemist would no longer sell me over the counter drugs due to the amounts I was regularly purchasing. I was finally treated with a little more respect and dignity when I returned from that GP visit with a prescription for pain killers. Then another 18 months later for them to finally diagnose the injury on an MRI was the double edged blessing and curse. anyway what I'm really wanting to say to you all is when you go to the GP you get 10-15 minutes if you're lucky to explain your problem, they see so many patients a day, many with diverse conditions, if you can't clearly describe explain and document your injury, why this program is helpful, you don't get the recognition you deserve. I agree and actually really like dphoenix's analogy of the navigator, as yes we are the one in control and living this saga, the GP is the trained provider of health care that must step us through how to make this a more comfortable existence with medication, relaxation or manual therapies, counselling etc... it must be a wholistic plan that we sign up to if we aren't getting relief or being taken seriously find another GP. I am not advocating dr shopping, just finding the right professional that will help you establish the best possible quality of life.

Jul 05, 2014 8:10 PM

Thank you dphoenix. I'm trying to find the appropriate information that will help me advocate for myself.....I'm finding this extremely difficult. I always thought e doctors work FOR you. Although I haven't had any of the severe issues most of you folks have I don't think its right for anyone to suffer. My frustration and pain has left me in tears since the demo all of pain meds 3 days ago. I fear going into an ER or even searching for another doctor. Is there a place/link that I could go to in order to learn how to " interview" a potential doctor? Seems being on a fixed income/medicaid makes you more vulnerable to an unspoken bias with doctors.

Jul 05, 2014 8:29 PM

I have the same problem, Hannah. I shy away from going to the doctor because I usually get slammed with a hefty bill. My insurance is okay, but I don't have $400 or $800 to drop on extra lab tests or a sleep study or whatever. I once had to pay $1000 for an ER visit when I had a painful IBS episode; I had different insurance then, but the aversion to medical bills is still there. I feel like I'm being nickel and died sometimes, and it's really discouraging.

Jul 06, 2014 4:48 AM

There are defiantly several books out there about how to advocate for the best healthcare and or how to talk to your Dr but I can't think of specific titles off the top of my head. However I found some VERY useful websites that are a must see if you are looking for advice and support. the first is the www.uspainfoundation.org. Under the "resources" tab of that page there is a link to "empowered links". There is then several good websites that relate to patient advocacy etc but the best one I think is most appropriate for the info you're looking for is the following: http://empoweredpatientcoalition.org/publications/fact-sheets

Jul 19, 2014 9:01 PM

Hannahh I really feel for you. I've had lower back problems for over 17 years, neck problems for 8 years, severe migraines to, (over 20 years), nerve pain in head, hands, arms , feet and lower legs (10 years) and I was told a month ago that I may have fibro myalgia. my gp has been great, they have helped me more than the pain clinic and consultants. I've been seeing specialists for 16 years now and I haven't got anywhere. the only consultant that was willing to help (was offered a c6/7 disc replacement) couldn't in the finish as the spinal clinic was closed at the hospital before I got the chance for the op. since then I have seen another consultant but he disagreed with the first consultant. pain clinic have not been much help. have had a few treatments. physio,(can only do exercises if I can move), and acupuncture( 1st time worked for about 5 days. after that tried more but no relief ), I did have a lumbar epidural but never again. I was in more pain afterwards. the procedure itself didn't hurt at all but never again. I've heard good and bad about it from others. I am due to see a neurologist next month. have mixed feelings but I remain hopeful that they may be able to help. a previous neuro told me my pain was all in my head. so am a little apprehensive but I promised my gp I would try. I feel I'm no closer to an answer than I was 17 years ago. I'm fed up of being judged by medical people. they don't know me and haven't lived with my pain. I feel like I'm going round in circles the only thing changing is my increased pain and stress levels. my family have been great but I feel a failure where
my youngest child is concerned because I can't look after her like I did my other two, because of the pain I am in. I hope you do find someone who can help you.

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