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21 Replies
smallfri - November 15

Hi all,
Just wanted to vent about a doctor visit. Had an update to do on my SS disability and had to ask the ? of 1) did not dicuss going back to work with my doctor,2)can go back to work3)cannot go back to work.
while in the room I heard the doctor say there was no way "ever" i could go back to work. Forgot to ask which box he wanted me to mark. So asked the nurse when she came into the room. She went to ask and came back to inform me he wanted me to mark "we did not dicuss it". What a jerk, after what he had told me in the room. So keeping my fingers crossed that SS doesn't bump me off for him telling me something different to write down, than what i heard him say. I have another disability now with a bone chipped off in my ankle and wear a ortho boot and foot brace.
I have been having extreme back pain for over 3 months and have been through every xray and test possible with no relief. My doctor just keeps having me do more test. But always sends me out the door with we are still looking for what is causing the pain.
At times it hurts so bad I would just as soon someone take me out back and shoot me. Can barely bend over to pick up anything on the floor. I do take ibporhine everyday but see no results. Have tried all the drugs in past 6 years and found only help it did was take money from me. So quit taking any of them. Why take them if they make you like a zombie or no results at all.
Just learning to live with it, but lately hurt so bad, wonder if I can ever find a doctor that can give me some relief.


TERESA - November 15

Smallfri, I feel for you!!! I went through two yrs of "we'll try this now let's try that" & I have just recently found a drug regiment that WORKS ( at least for NOW)!!! I have now got to deal with finding a new doctor without any money or insurance!! Then if I do find a new doctor, will he/she keep me on what I am taking now or will we start all over! I responed to your thread on my post "DISABILTY" I ma lookin forward to your responce!! What meds have you tried? Can they take away your SSDI once they have giving it to you? How often do they revue your case?


TERESA - November 17

Smallfri, I am extremely interested in your reply. Signed NOT SO PATIENTLY WAITING!


TJS - November 17

Hi smallfri, soory to hear about your experience with that jerk. Hey don't forget that doctors are there for the money, why does everybody put them into a higher level of humanbien than the rest of us? I have overheard the chitchat of the doctors and nurses at my hmo( which I no longer have Insurance for) for the most part they were talking of vacations, new cars, real estate deals etc. just the normal stuff people talk about. However most doctors get kickbacks for perscribing some meds. or refferalls for ct's mri's and other testing. don't think for a minute they are not selfishly thinking about there own financial gain.. It has been my observation with the case I have for severe allergic reaction to the dust at my work which in my oppinion caused my fibro. The doctor only thinks of me the five minutes before my appointment as he is reading my file. After the appointment he fills in the new info closes the file and that is it onto the next file!!!!!!! If you think your doctor is your freind or is there to sincerely help you, you are setting yourself up for a letdown. my case is over a year so far and the lawers that I have contacted want 10% percent of my current timeloss and 36% of any future settlments with absolutley no guarantee for anything. I have better odds in the state lotto. By the way my doctor has just left the clinic and turned my case over to a new doctor.. not sleeping so well lateley.. I am begining to feel the old fight coming back and am taking charge of my own personal energy.. I have learned through this that by giving my personal energy to others IE,
employers !!!( over 300 hours overtime in the dust in 2004).
Doctors!!! please tell me whats wrong with me!
State !!! hey I need some help here.
Lawers!!! bloodsuckers..
Then the energy that I have ,has been sucked into the vacum of wordspeak and circletalk. And all of these people go home at the end of the day and are proud of thier jobs !!!!!!!!!!!! Go figure!! Take back your personal energy and stop the bloodsuckers from using us to get what they want.
P.S. In my oppinion most Doctors who really care are in research..


barbar - November 17

Don't forget that others get it worse. My sister died of cancer a few years ago and it was only after she had died that we realized the only doctor we could trust was her surgeon. Her oncologist kept giving her good test reports for her chemo so she continued with that and got better and better results so she continued and continued but the symptoms got worse. Pretty soon the only thing that would help was radiation and then it was something else and something else. They kept her going with could test results showing her the medication was working when she should have been in hospice. All a cancer patient is is an opportunity to soak the insurance companies for the really big bucks. Not only did they give her false hope, they kept her dragging her sick and ravaged body from here to there when she could have been with friends and family, making the best of what she had left. In the end, she died within the timeframe her surgeon had originally given her. If they will do this to cancer patients, imagine what they will do with us. Even though we have our difficulties with these guys, we don't get it as bad as folks with other ailments do because insurance companies do not pay out big dollars for us. We've all read comments on the forum of what it's like not being diagnosed or understood, but imagine what it is like to suffer the pain of cancer and be told that your markers are showing improvement or even remission when you are in fact dying, and dying horribly? She had to take all of her nutrition through a tube yet she wasted away. Keep feeding her they said yet she wasted away. In the end, the doctor explained, all we were feeding was the tumor. She finally asked to be taken off the feeding tube and she died quietly in her sleep after the tumor's food supply had been cut off. Medicine is an industry whcih means there will always be those who exploit the vulnerable. The sick are dollar signs as soon as your ailment is covered by insurance.


smallfri - November 19

I have tried every drug available for FMS. SOme worked some just made me sleep most of the time, which did make the pain more managable. But I wanted to do things the rest of my life not just lay around and sleep all the time. So now just taking Ibporphine everyday. Sometimes it helps but most often not.
As for the revue the SS gives you is an update on your health every 2 years. Last time they didn't ask the question where you able to go back to work or did you discuss this with your doctor. Unfortunately the doctor that did find out what was wrong with me is over 100 miles from me and don't know if he is still practicing let alone see me. Not to mention the long drive my body would have to take to get there. So just trying to find a local Dr. that can give me some relief. Thanks for offer of hope from the others.


TERESA - November 19

Smallfri, I wrote to your response in my post "DISABILITY?". I am really interested in your answer! PLEASE READ!!! How old are you & how long have you had FMS? I hope that we maybe able to help each other!!!


smallfri - November 21

Teresa, I have had FMS for over 6 years now, and am 51 years old. I've had pain before because of this but nothing like what is going on now with my back. I was wandering has anyone had pain management classes and just what do they do for you with FMS? I seemed to have had to deal with my pain over the 6 years alone, but would like to learn more on managing it without going to some class.


TERESA - November 21

Smallfri, there are some books that have been discussed on this site, that help with mind-over-matter. I don't recall the titles now but I am sure that someone here does!! You said you are form Missouri? What part? There are support groups in MO that could help too. The closest one to me is in Monett. That is too far for me but if you are in a large city, I would check the phone book or maybe the nearest ER would have that info. I think that would be a good place for info from others. You said that you had SSDI? How did you go about getting it here in MO? How long had you had FMS before you were able to get it? Hope that this helps!! Here from you soon!!


smallfri - November 25

I had FMS for a year before I found a doctor that knew what it was i was going through. Traveled Missouri and Kansas area before one in St. Louis knew what it was. I live about 100 west of St. Louis. No is a small town I live in, only support I can see is at the hospital is a "pain management" class. But Dah!!! I've managed my pain for over 6 years now. But is worst its ever been. Ready to go to another town and admit myself so they can get to the bottom of this. But want to wait til after the holidays...Just wander if they will admit me..or just go to the ER.


TERESA - November 25

Smallfri, I am looking for a DR too. I have a friend with the same DX as I have, (Lupus & FMS). She see is going to be seeing A rheumatologist in Sprigfield, MO here pretty soon. She will let me know what she think about her. I think that a woman DR, in my experence, is more simpathic to our problems! as far as going to the hospital, they won't admit you without a DR order, so go through the ER. Hope this helps!


TERESA - November 25

PS: If you are serious about going through the ER, I would do it soon! The hospital won't keep you for more than a day or two, unless you have super good insurance LOL! They probably won't admit you at all, but can most likely get you an appointment with a specialist or schedule some test for you! Anyway do it now so maybe you can start feeling better by Christmas!!!!!! Hope this helps!


smallfri - November 26

Don't to many test left that I can think of they haven't already done...:( Last visit he was wanting to poke a scope up my rump...but since he told me to mark "didn't dicuss going back to work" told the nurse no sense in more test til i see if he has caused me to get my SSI taken away, as I won't be able to pay out of pocket for anything that might show up that needs fixin. So anxiously awaiting til the first of Dec to see if I still have my Disability..In the mean time hanging onto every dime I can.
Thanks to all for all the info on going to the hospital. But this terrible pain like a knife in my middle part of back isn't going away, and doesn't seem doctors here really care how you feel. just get you in collect their money and out the door you go.
still looking for Rumatogelist (sp) in my area. Hoping they could help better than these jerk regular D.O. Doctors.


TERESA - November 26

If this DR in Springfield, MO is any good maybe you can try her! Springfield isn't that far from you is it? I had my gallbladder removed 8 years ago. Your pain sounds like what I had!! Have you had your gallbladder checked? All my tests came back neg. but I made them take it out anyway!! The test that came back on it, after it was removed, said I had a chronic infection in it! Does it feel better if you lean over & rest on something high like an ironing board or counter top? Does it feel better after you eat or is it worse? This is just a suggestion, but would it be better to go to the DR now, before they remove you from SSDI IF they are going to! As for the colonoscopy the want to do, that was one of the only test that they wanted to do to me that I refused to have done!!!! Now the DR I have been going to wants me to have one!! I am still refusing it till I have other cheaper test done!!


smallfri - November 27

T, relief when i bend over a countertop or set down, is more like a awe!!! relief to get pressure off whatever is making it hurt. will wait til first of the month to see if i still have my SSI coming in before going to another dr. Yes, Springfield isn't that far away. Have been there before to get my hands worked on. No they haven't checked my gall bladder.As for any difference in pain before or after eating, there is none. I did have one dr. check my urnine for an infection a few years back found blood in it. said nothing to worry me if it wasn't there before then something is going on. so she just gave me meds and come back for same test, saying is still there but not to worry about it as most women have this and is nothing to worry about. So i just dropped her and the thought of anything wrong. Still in the back of my mind wondering what the heck it was, and is it still there. Keep me informed on the Dr. in Springfield and if she is any good. Willing to give her a try. Thanks for all your input. is nice to know there are someone out there knows exactly what we are going through.


teresat - November 28

I would get your gallbladder ckecked as soon as you know if you aare going to get to keep your SSDI. It could also be a kidney infection or stone. Stand on your toes & come down on your heels with all your weight. If the jog hurts in your back it might just be a kidney stone. Hope this helps.


barbar - November 28

Smallfri, that pain like a knife in the middle of your back sound like lumbar stenosis. Get to a good rheumotologist. THey can look for all the varieites of arthrities as well as treat the FMS. As for medications, get to a good psychopharmacologist. These are specialists in pharmacology and can develop the right 'cocktail' for your symptoms. It took me years to get it straight and then it will chenge whenever there is an improvement in the medications. I have a couple of things wrong and my psychopharmacologist was able to pull together medications that worked on a variety of my different conditions at the same time. I take way less meds now than I used to but I am still at 9 medications every day. More important, there range of negative side effects is virtually nil. Let's all remember that we have other things wrong with us that get lost in the mix. Good luck.



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