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Old 10-23-2008, 06:24 AM   #1
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I feel I need to say this

I was not going to put up a new post, but after reading Hessies I thought I should.
We have discussed being our own advocate & how doctors can at times push aside our concerns our ignore our complaints.
In the beginning of the wild ride with CP I had some problems in my lower extremites as well as upper. Well because I believe it was so wide spread & not so easy to piece together the problems & complaints about the my hip/leg/back were ignored. I stopped complaining about it because I was tired of the doctors trying to place the blame on depression & all in my head garbage.
I had an MRI on the C & T area, it must of picked up the first 2 of the Lumbar, & yep something going on there. Surprise!
I am happy that I may have some answers & yet just abit peeved at all these doctors for ignoring my complaints & suggestions. As I have asked in the past to have the entire back looked into. Now the radiologist is recommending the lumbar be done.
I guess what I am saying is follow your gut, your pain, your bodies. If you believe there is something wrong dont let it get pushed aside.
All this suffering. I am hoping nothing major comes out of it but if so, well I am not going to be a happy camper. THis is our lives, our bodies, our futures.
I could not walk with out limping going in to a couple of those visits & said I did not understand what was going on........ Yet nothing........

Alot of well, have you been depressed? Under alot of stress? We feel you are depressed or have hidden anxiety but dont realize it. coming from various doctors. Well I would not want to be the next doctor who says that to me.
Shame on me to, for giving up on getting anywhere with that area. I was just going ask my PM to look at the lumbar due to an increase in back pain, now I guess I will get it done after almost 4yrs. I allowed them to push this aside, so I hope this makes some sense to you all & that if you feel your body is sending you a message dont let the doctors just ignore it.

I have prayed & prayed & had alot of prayers going out for me, & yes finally turned to my priest who helped me to have hope & faith. I pray now that these test results will lead to some answers & more so, pain relief. Thank you all for being there for me & so very much for you prayers & time.
I know without one single doubt that you have all given to me what I needed to function, you are just as important as any part of my Pain managment.
God bless, Sammy

Last edited by sammyo1; 10-23-2008 at 07:37 AM.

 
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Old 10-23-2008, 07:13 AM   #2
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Re: I feel I need to say this

Sammy this is so true!!! As several of you know this happened to me. I was having some increased symptoms and they immediately put the blame on medication and my back. Come to find out I had a thyroid problem that went undetected which was causing increased symptoms and pain. I still have a underlying problem with my back but the medication for the thyroid is slowly decreasing some of my pain.

So yes keep on plugging, see multiple doctors if that is what it takes, LISTEN to your body.
,

Last edited by ms_west; 10-23-2008 at 07:13 AM.

 
Old 10-23-2008, 11:24 AM   #3
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Re: I feel I need to say this

Sammy,
I am such an advocate for not giving up. I learned that unfortunately not every DR is a smart one, not every DR has enough knowledge to put the right dx. Many of them are so far behind in their "knowledge" and don't have enough desire and ambition to learn more. Yet. they have a nerve to tell us that this is depression or anxiety. This would be the last visit for me personally. I don't waist my time and money on morans. I am intelligent enough to recognize a good and carrying Dr and the one who doesn't care. Fast fix, gets your co-pay and that is all he needs.
I absolutely insist on seeing a second and more if needed opinions. I done it myself. And guess what? A good, confident Dr wants you to see someone else for another opinion. Yes, they do!!!! I was told by a friend DR: doesn't matter how much trust you have in your DR. how much you like him, go for second opinion.
I am very suprised that it took you 4 years to have a test done, am I correct? But why? Why nobody sent you to have MRI or CT done? As far as I know they do ex-ray at first (which is useless in most cases) and if you still in pain they do more serious tests like I mentioned earlier. I can't believe that they wouldn't do it for you!

Let us know what is going on and what exactly was on your report, maybe we can give you an idea. Of course we are not a DRs, only him/her can advice, but maybe someone here had same reports and can share with you.

Best of luck to you and thank you for sharing your story.
Moldova

 
Old 10-23-2008, 06:52 PM   #4
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Re: I feel I need to say this

Sky, How sad, damage because of not looking into a problem/complaint. I feel so bad & angry on your behalf. Hard to swallow. So very wrong.

Moldova, I did have tests but never on the lower back & it took I believe at least a year to get any real tests on my upper back.
Everytime I would mention any symptoms of or pain in that area along with the upper torso I would get the that cant be attitude, dont think they ever considered there could be more then one thing going on in there. I take part blame for not pushing but after doctors keep bringing up depression & all that crap because there is so much going on you get abit apprehensive & I was pretty desperate to get my other problems such as the chest/ribs & shoulder looked into, loosing ROM was scaring me along with all the other issues so I just let the other problem go by the way side.
It took so long for these problems to surface & be found that I was so afraid of a doctor not taking me serious enough to treat the pain. I had the shoulder which ended up with surgery, now the C area & looks like may very well be the Lumbar area to, multiple problems. Many times doctors get focused on one area.
I recall bringing symptoms up that were not taken seriously but am finding out now why I have had them. Given the months I waited to get into some of these specialists & how hard it was to get the pain treated you get abit fearful of rocking the boat.
I knew something was wrong with that lumbar region somewhere & had discussed it with my husband about bringing up to my PM who I wanted to get to know better & allow him time to get to know me. Part of it is insurances, I had a doctor come right out & tell me he did not like fighting the isurance company to get tests such as MRIs done.
So yes in aprox four years this has all been going on not one doctor looked into the entire back area, although with each new doctor I brought it up.
I was even told that with pain in all those areas I better get use to the fact that it was probably Fibro. That was with out one test done. Never went back to that doctor. Then most everyone would not deal with narcotics & the ones who did would do so for a short time. I focused on the one large area & hoped for the best because I was tired of being treated like I was crazy, & I pray now that it all finally is found & if I am lucky can get some relief. So there you go, hopefully I explained good enough.

I stopped having faith in doctors, I like my PM & thus far I think he cares, but I will reserve all my faith for god & hope for the best when it comes to doctors. Its sad to hear stories like skys. God bless, Sammy
PS report is on spinal board

Last edited by sammyo1; 10-23-2008 at 06:53 PM.

 
Old 10-24-2008, 06:29 AM   #5
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Re: I feel I need to say this

Hi Sammy, I know from personal experience of how doctors blame your pain on depression. Here's my experience with that issue, when I first started having real problems with my legs and arms, I was told it was due to depression. That was over 10 yrs ago. For some reason the NP thought I was suffering from depression due to my recent divorce from my husband. Which was farthest from the truth because I has just got out of bad marriage and was not at all sorry for divorcing him. He was a drunk and a drug addict who didn't want to half work. Then when the medicine she gave me didn't work, she sent my to a psycharist. He inturn somehow deemed me Manic Depressive for some unknown reason. I spent the next 3 yrs living a real live nightmare due to the medications that they had me on. I literally thought I was going insane. I lost my job which paid very well and even got to the point I couldn't work at all. Finally after 3 yrs of these medications, I finally took myself off of them and manage to go back to work. The withdrawals from these medications were another living nightmare.

I was finally able to go back to work but yet was still suffering. No one seem to listen to me that there was something serious wrong with me. I even started losing my hair and I had real long hair at the time. Then one day out of the blue 5 yrs later, I started having severe muscle spasms in my neck and my shoulder was in alot of pain and was very sensitive to the touch. Then I started getting real sharp pains running down my arm whenever I would stretch it out. I also starting losing the strength in that arm as well. I saw 3 different specialist who still couldn't figure out what was going on. I finally got where I couldn't work anymore as well. Finally I got to see a doctor who knew what was going on. By then I had lost complete use of my left arm and is permenatly locked up in a position where my left hand touches my left shoulder. My left shoulder in also elvated higher than the right and I lost most of the use of my right arm.

Sometimes, you do have to be your own advocate and keep pushing. Especially when you know that something is serious wrong and it not due to depression. So keep pushing for answers even if you have to keep going from doctor to doctor to you find one who will listen and want to help.
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Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 10-24-2008, 07:24 AM   #6
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Re: I feel I need to say this

Ray, I am sorry you had to go through that, once again how sad.
I admire any doctor who just says "I am not sure whats going on" rather then try to lable it something its not, such as depression. I am sure there are those who suffer pain due to depression dont get me wrong.

I hear you, I went on meds thinking for a very brief period thinking perhaps I am depressed & just dont know it, well after taking the meds I sure ended up that way, Never do I want to go through that again. So I do indeed understand.

You know sometimes I wonder if doctors just look at records that come from another doctor & assume instead of starting over with trying to find the real cause. Makes sense to think that could be the case. I had a wonderful PCP who was so open & caring but he passed on so I know there are good doctors out there, but I guess once bitten twice shy.

So many sad stories out there. I wish we all knew then what we know now. All the suffering. One good thing we all met each other & understand.
I dread any new doctors & going over the whole long story, I was just thinking today I think I will type up a summary & just hand it to this surgeon at least I will (hopefully) not leave anything out.
Ray I truely do wish you the best, you are so very sweet & deserve some peace. I am here for you anytime you need me. God bless, Sammy

 
Old 10-24-2008, 07:54 AM   #7
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Re: I feel I need to say this

Quote:
Originally Posted by sammyo1 View Post

Shame on me to, for giving up on getting anywhere with that area. I was just going ask my PM to look at the lumbar due to an increase in back pain, now I guess I will get it done after almost 4yrs. I allowed them to push this aside, so I hope this makes some sense to you all & that if you feel your body is sending you a message dont let the doctors just ignore it.
Great post Sammy! I read every word....Twice. Everything you say is point on. I've kept up with your case / situation for quite a while....You've been through an awful lot, and I really feel for you. I still remember how your surgeon bailed on you. You have triumphed through it all so far.

I think what happens a lot is that patients are leery of talking objectively with their Docs....Patients on narcotics are different than other patients....They are often "afraid" or "apprehensive" because they feel Docs may change or reduce the meds they're on...They don't want to "rock" the boat.

Well, for me, I think it's just the opposite....Paitents who are "content" each month, would be the ones I'd worry about if I were a Doc. I'd also worry about those who were overly demanding or showed all the "warning" signs (early re-fills & etc.). However, those who are truly in pain, communicate with their Doc in a very upfront way because they are in pain and miserable, to an extent. About two months ago, I looked my Doc right in the eye and told him that it's been rough and that I'm suffering and to please help. I told him that I thought I need a qty increase on one of my BT meds. He replied "Do you really think you need it." And I said "absolutely...I'm struggling....I am dead honest with you Doc because if I'm not, you can't help me." He replied with "ok then....Let's do it." I was very firm, but not demanding. I think my tone could be described "scared" , but "upfront", if that makes sense.

Sammy, you're right....We have to communicate with Docs. Many patients I know are very monotone with their Docs and go through the routine and just don't want to "rock the boat"....Almost like the appointment is a social call, to a point. Every patient has to do what they think is right and works for them, but I think the end result for a lot of people, is under medicated.

Take care Sammy, and I hope you start to feel better.

Regards,

Ex

 
Old 10-24-2008, 09:34 AM   #8
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Re: I feel I need to say this

Sammy,
based on my own experience I would like to give you an advice since I been in your shoes as well.
I had a moment when I lost faith in every DR and told myself not to go to them anymore and whatever be... This is so not me, but I felt bad to take money from my family, spend on app with bad DRs and not to get anywhere anyway. I usually never give up on anything.

My hubby one day told me that enough is enough and we are going to see somebody in NYC at Hospital for Special surgery. If you would see me going home! I was crying from being sooo happy. Happy that I finally met someone who cared, who explained me my options, honestly told me in every detail what can i expect in a future and even would take me as his patient and try to re-do previous spinal surgery.
He introduced me to a crowd of DRs who I use till this day and extremely happy with them. My PM DR is unbelivable, he cares so much! Can you imagine a PM (he is also anesthesiologist at same Hospital) Dr calling you on Saturday to find out how are you doing after discogram? If he is not happy with the results of new meds he puts me on, he insists on trying something else.
Another words I can tell you: great to get your hope back, great to have faith in your DRs. I wouldn't waist my time and money anymore on someone who I did not trust or like from appointment #1. I just don't go back to him/her.

I am sure, honey, you can do some search too and find someone really good, you so deserved it. I understand you very well and feel for you. Just don't give up, please. Unfortunately not many good once around, but they are there.
I will never forget words of my old family DR. He retired 5 years ago at age 76, he was a real DOCTOR. When I asked him how come not every DR is like him, he said to me: "When I went to Medical school, it was an honor to become a Doctor. Now it's all about business". So true unfortunately.

Hugs and blessings your way
Moldova

 
Old 10-24-2008, 09:43 AM   #9
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Re: I feel I need to say this

Hi Sammy, yes, I have found some peace from all this. I have a doctor who has been great and there for me and knows how much I suffer. He helped me get my disability and has been a great help with trying to keep the pain and spasms under control. I do have some bad days especially when we are due for any kind of weather change. I also have some good days as well. I have to live with the limitations as far as my arm is concerned. I also meet and marry a wonderful man that has been there every step of the way and does everything he can for me. I also have two wonderful grown daughters that are there for me and would do anything for their mother. Recently, I contacted the local Vocational Rehab center who helps people with disabilities get jobs. They have their own assembly plant which means you can work as much as you can. Which is good because you don't have to worry about your attendance or if you need to take a little extra break while working. So things are really getting better for me than in the begining when this all got started. So keep pressing forward because there is hope for you out there.
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Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 10-26-2008, 05:07 AM   #10
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Re: I feel I need to say this

Thank you all for your opinions & encouragement.
I am thus far lucky to have my PM & his staff. I dont want to mislead anyone about that. My PM is trying , he has raised my meds & added to them. He is one who wants answers along with treating the pain & I admire him for that. I really tried asking around to those I trusted before choosing a PM & he has a great reputation. His staff (thus far) is the best I have ever seen, compassionate. One of his surgical nurses told me they "feel" for everyone coming in there. They are aware that for many these procedures are the last hope at getting some relief from chronic pain & they pray for everyone who comes in to have success. I have learned that the staff can be just as important as the doctor.

I will be explaining to my PM about the lower back pain & tell him exactly why I never brought it up until now, for that matter this surgeon to.
I did want to say I posted awhile back that I went to see a naturalistic doctor who does this test called Electro Interstitial Scan, he told me then without me saying one word that I had back problems, especially in the lower back & that I needed to get it checked out. Even then I held back on saying anything. because of my increase in pain even my PM just asked me if I was sure I was not depressed, my husband stopped him on the spot & my PM kind of I hope got the message. So thank god something has finally shown on these MRIs. I am afraid of these pain levels & the fact that the meds are not making much of a difference so I will tell both the surgeon & PM & not hold back any info. what so ever. I have reached my limit with tolerance of doctors not listening. I will also explain that in my opinion I had & have multiple problems & I no longer want it pushed aside. I will pressure them abit if need be.
I always count my blessings that it could be worse but after reading that the longer neurological damgae is let go the more likely permenant damage will exist & that has me seeing red at this time. I will no longer let any doctor play guessing games with my body. I read some of the stories here & want to rage & weep over the injustice of it all. I have often said I wish there was sometype of pain detecter that doctors could hook us up to & see the pain we are really in.
I have an appointment with the surgeon on thursday & the PM on the following wed in which I will take EXs advice & point blank tell him my pain levels are just to high. I hope some of these stories & good advice here reaches others & they have better luck them some of us have had.
Moldova I hear you & I can tell you that I am done with any doctor who ignores my concerns, its my life & I have to take charge. God bless you all, Sammy

 
Old 10-31-2008, 09:47 AM   #11
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Re: I feel I need to say this

You are phenomenal Sammy and once again have pointed out a on going issue-none of us should be paying for service we are not getting - physicians need to be accountable for their behavior - you deserve to be treated respectfully - even if you were a drug addict, I believe you always have the right to be treated respectfully

One of my friends has a copy of the patient bill of rights and when she is getting smack talk, she pulls out a copy and gives it to them
huggs Aver

 
Old 10-31-2008, 07:04 PM   #12
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Re: I feel I need to say this

Aver, I have to say every since I have those MRI reports I have had to calm down. My anger can get the best of me, & that is not like me to stay this way.
I think back on all the time wasted & all that was said to me, all the pain & medical bills & so on....
I know I am wasting my time thinking about it, nothing I can do know but encourage others not to give up, I just have a feeling so many are going through the same & it really bothers me more then I can say.
This has cost me time with loved ones, loved ones that are gone now & now time with my sister who needs me & I guess that is what is bothering me the most. I sometimes just vent here, but I honestly am touched by some of the stories I have heard. My whole life has been effected here, as I am sure you all understand. I wish I could just go back & let those doctors know that for all they tried to make me think it was all "in my head" I will be on my third surgery next year in all reality. I just cant believe it was more then just one doctor who blew this off. Makes you wonder. I admire your friend & I would love to see some of the reactions she gets. god bless, Sammy

 
Old 11-03-2008, 11:17 AM   #13
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Re: I feel I need to say this

Sammy, honey please take care of yourself becasue along with your pain I feel some great sadness from you - I hope I am very wrong because I am worried about you - Huggs Aver

 
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