The pain is awful... am I losing my mind?

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sammyo1

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Sun & company,
I feel for you & thought I would add my opinion, for what its worth.
I have had pain for almost four years & been to doctor after doctor. Test after test to. ON the first MRI I had it showed some minor problems in the C area (have C & L issues) but not enough for the doctors to link my problems to what had shown on the tests.
Had nerve conduction done to, once again somethings were there but not enough so the doctors said.
All through this I was in pain like crazy. My arms are like one of the poster said about their legs, hurt so bad some days I wish I could just remove them.

After years of all this testing & suffering they ended up thinking it was just the shoulder & had surgery on that. I stopped bringing up the pain in my lower back because they just looked at me like I was bored & had nothing better to do then complain. So I focused on the pain in the upper areas.
Finally I was sent to a pain managment doctor after pretty much being told to live with it all. Thank god he chose to repeat the MRI, there is full compression on one area & partial on the next. The areas that I was told had nothing to do with all my pain.
The MRI picked up the first to discs in the lurabar & those are herniated to, along with some other problems.
My point here is keep on the doctors, I do not trust all these tests & honestly do not believe the tests show it all, & I am not alone in that opinion. I am all for having what ever tests need to be done to find the problem as it is terrable to live in pain every day.

If my PM would have not insisted on another MRI I would have never known.
I am left to wonder about the lurabar & have to wait for another MRI on that area until the cervical is done. That alone worries me so dont give up, keep insisting. You know your body & you know when something is not right. I hope this tests reveals the problem & that you can get the help you need.
good luck & god bless, Sammy
 
I am scheduled to have a discogram in the morning. I was told that it is a very painful procedure. I have suffered back pain for more than a year now. I have had x-rays, MRI's, CT scan, myelogram, and EMG that have all come back with normal results. The people at workmans comp are saying that all reports are normal and that I should not be having the pain that I'm claiming to have. I'm so tired of dr's saying that everything is ok. Don't get me wrong...I truely wish I wasn't having all of this pain. To start with, the pain was in my lower back, left hip, down the leg, into the foot. A little over a month ago, I was simply changing position in bed when an excruciating pain hit my right thigh and groin area. I thought I had pulled a muscle. When I visited my physician and told him what happened, he said that he felt the disc had "gave way". Now not only do I have pain in my lower back, I also have pain in my right hip, down the leg and into my knee. Yet workman's comp says there is nothing wrong. Am I loosing my mind? If nothing is showing up, where is this awful pain coming from? I am so afraid that this test will also show that everything is normal. Then what? WHAT IS CAUSING THIS PAIN? Can someone please give a suggestion? Or is someone facing the same thing I am?:confused:
 
Thank you to all who have replied to my plea for help and answers. I had the discogram done. I was very nervous when I went in. The nursing staff was very supportive of me and answered all of my fear filled questions. I was told that I would feel pain in the disc/discs that are damaged. The IV was started and I was wheeled into the room. There were monitors all over the room and I thought, "what in the world have I gotten myself into?" I was helped onto a table in the center of the room and positioned on my stomach. The nurse asked which side was hurting the most and I was then told to lay on that side so the nonpainful side was exposed for the procedure. The last thing I remeraber was hearing a lot of voices. The next thing I heard was a female voice telling me it was over. I was shocked because I didn't feel a thing. (amazing huh?) I was then wheeled back into the room where it all started. I began to cry. The nurse asked me if I was ok. I told her that I felt fine but that I knew that nothing was going to happen because I didn't feel a thing. She said, "oh hun, yes you did. You are the best patient we have ever had. The dr. inserted those needles and you didn't even flinch. When he injected the dye in the first disc (L3/L4) you didn't experience any pain at all, but, when he did L4/L5 you screamed, and when he did L5/S1 you let out a blood curtling scream. The dr then ordered more medication stat. So yes, you indeed experience pain."
When I had gotten dressed and was about to leave, a nurse came to me and gave me a cd. She said it was pictures from the discogram and CT scan. I looked at it when i got home and was amazed to see that the first disc showed a black blob inside the disc, but the second and third showed the black blob in and outside the disc. There was typed worRAB on the first picture saying no pain, then on the second it said pain lower back, finally on the third it said pain left hip and leg. hmmmmmm
Will cont next message.......
 
Well I took the cd to my attending physician. He told me that I have two discs that show significant damage. He says that for the record he's saying that the test was positive. He says that he truely feels the two discs are ruptured. I'm telling you.......the L4/L5 disc and the L5/S1 disc look like they are exploding. The dye is spread all over the place. He is recomending that I go to a neurosurgeon for surgery. Now let's just pray that workman's comp will approve the surgery soon. However, I have a feeling they are going to want me to settle and pay for the surgery out of the settlement money. Nope...Nope....Nope. I'm not a spring chicken anymore and there is no telling what will happen during surgery. I'm not going to settle until after the surgery. I asked the physician if the damage could be due to degeneration of the disc and he said "No...you have a rupture and it was caused by something sudden". So there ya have it. My attorney and the dr said "Now let them try to say nothing is wrong with you. We have the proof right here in our hanRAB now. The cannot deny your injury." That gives me some hope.
Just in case I don't have a chance to come back, I wish you all a very Merry Christmas. Take care everyone.:angel:
 
hi sunshyne,

A discogram results will tell if your pain is indeed coming from a disc problem. They inject the disc with dye and that in turn pressurizes the disc and if you have problem disc, it will be very painful. After that is done, you will have a ct scan. The ct scan shows where the dye is through out the disc. I had that done the day before Thanksgiving. It is moreless a test that will give a doctor information to help with a surgical decision. If you have more questions, I will be glad to answer you as far as what I know about the discogram :)

LYNN
 
Hi sunshyne....

If your discogram showed dye on the outside of your disc, you have probs. That is eactly what mine showed as well. My pain mg doc told me that very day that I indeed needed the fusion. I had the fusion this past tues. Same disc as yours. I had a ALIF. Let us know who things go for you. I also went to a neurosurgeon :) Good luck...

LYNN
 
Thank you to all who have replied to my plea for help and answers. I had the discogram done. I was very nervous when I went in. The nursing staff was very supportive of me and answered all of my fear filled questions. I was told that I would feel pain in the disc/discs that are damaged. The IV was started and I was wheeled into the room. There were monitors all over the room and I thought, "what in the world have I gotten myself into?" I was helped onto a table in the center of the room and positioned on my stomach. The nurse asked which side was hurting the most and I was then told to lay on that side so the nonpainful side was exposed for the procedure. The last thing I remeraber was hearing a lot of voices. The next thing I heard was a female voice telling me it was over. I was shocked because I didn't feel a thing. (amazing huh?) I was then wheeled back into the room where it all started. I began to cry. The nurse asked me if I was ok. I told her that I felt fine but that I knew that nothing was going to happen because I didn't feel a thing. She said, "oh hun, yes you did. You are the best patient we have ever had. The dr. inserted those needles and you didn't even flinch. When he injected the dye in the first disc (L3/L4) you didn't experience any pain at all, but, when he did L4/L5 you screamed, and when he did L5/S1 you let out a blood curtling scream. The dr then ordered more medication stat. So yes, you indeed experience pain."
When I had gotten dressed and was about to leave, a nurse came to me and gave me a cd. She said it was pictures from the discogram and CT scan. I looked at it when i got home and was amazed to see that the first disc showed a black blob inside the disc, but the second and third showed the black blob in and outside the disc. There was typed worRAB on the first picture saying no pain, then on the second it said pain lower back, finally on the third it said pain left hip and leg. hmmmmmm
Will cont next message.......
 
How are you doing since the surgery? I would like to know your experience immediately after the surgery, how long you have to stay in bed afterwarRAB, and how long before you can start normal activities. I'm afraid because my husband and children depend on me to do all the cooking and washing clothes. They can do the rest. I have a feeling Il'm going to have to cook some dinners and freeze them. They do know how to use the microwave.
 
Continued from last message:

What color does the dye show on the film?
I plan to show the cd to my attending physician as well as my attorney.
Workman's Comp is not going to want to pay for any more testing. My attorney asked if the dr's say that I need surgery do I want it. I told him that as much pain as I have been in and am still having, the answer is YES.
I have been on pain killers since the beginning and have tried PT which made the pain worse.
Lord only knows what's next.
 
Hi Sunshyne.....

I feel as though I am doing great. I do have lots of pain but I am managing the pain pretty good. Immediately after the surgery, I did ok. I was sitting on side of the hospital bed that night. Which surprised my doctor. I do think they must use nurabing medication while doing this surgery. And of course, I was on morphine and valium. The day after surgery, the therapist at the hospital had me up walking with the use of a walker. I did that 2 times that day. I did ok. My doctor told me i was to do nothing except walk for 1 month. I go back for a check up then. He will then determine what I can and cannot do according to how i am doing. OHHHH....he did allow me to go to the gym and walk the treadmill as soon as i felt up to it. I may do that next week. I just let my body tell me when I need to go lay down in the bed. I do have the help of my mother to help with laundry. You will not be able to bend or twist so perhaps you will need help as well. As far as cooking........if you were to cook things ahead of time and freeze, that would help you lots. And you could use a slow cooker. I will tell you......you will need some outside help right at first. I am still having someone help0 me in and out of the shower. Do you have teenagers? If so.....that would be of great help right there. All people handle pain differently. But I will say......it is PAINFUL. The incision on my belly hurts as much as my back does lol.......well, let me know how ya do and when you go in for surgery. If you need anymore info, just ask, i'll be glad to try and answer!

LYNN
 
I'm sorry about what you're going through. I went through a similar issue when I had a herniated disc years ago. I felt like my Doctor was looking at me like I was losing my mind. Yet, similar to you I was in so much pain it hurt to walk. It's so frustrating to feel like no one is listening. The wonderful thing about this site is it offers so much support and so many forum merabers that can totally relate to what you're going through.

A discogram will provide important information about what's going on with your discs and since you're already experiencing so much pain, you will likely tolerate the procedure very well. The answers it will hopefully provide is well worth the pain.

Welcome to the forum, you've come to the right place for support and feedback. Sending you positive thoughts for your procedure! Keep us posted on how you're doing. :angel:


~ Fiona Jo ~ :wave:
 
sunshyne183:

I don't really have answers to your questions. I just wanted to let you know how happy I am to hear that you got through the procedure and it sounRAB like it's providing the answers you need for your Specialist to develop a plan moving forward.

Again, I'm happy you came through the procedure so well. :angel:


~ Fiona Jo ~ :wave:
 
Hey Sunshyne-

I had a discogram done last week and it was painful, but all I remeraber about the procedure is that I thought it was painful. They gave me a sedative. It will be over so fast too. It does give very good information though, so it is well worth it.

My test results are showing problems, but they all say "no evidence of nerve root impingement". That is BS because my leg pain is so bad that I want to cut my legs off. In my opinion, those tests do show a lot, but not always everything.

Good luck and I hope you find answers!
 
I'm glad you are doing so well after your surgery. I was surprised to hear that you have an abdominal incision though. My sister and niece had the same surgery and their incision was in their lower back. Hm. Yes, I have planned to cook ahead of time and freeze meals. I also have a new crock pot that was given to me as a Christmas gift. My teenage daughter and husband are going to have to learn to use the crock pot AND the microwave oven that's for certain.
I just hope workman's comp will approve the surgery soon.
Thanks for your reply to my questions. I hope you had a wonderful Christmas.
 
Hi

I too have similar symptoms as you. Back pain, pain and other sensations, including tingling/hot/cold and nurabness that comes and goes down my legs but also into my hips and feet. It gets so painful I can't walk far. I have had to totally limit my life to cope with this. The doctors keep telling me there is nothing wrong with my back and there is nothing they can do to help me so they had to leave me in pain. All they said was to take painkillers on a regular basis which to me is an obvious answer. I'd already worked out the fact I have to take painkillers. I have gone to two spine specialists and there is apparently nothing they can do and they told me that it's good news they can't find anything wrong with my back. Yes, I agree with them it's good news that I haven't got anything visibly serious but to me that also brings bad news as it gives no answer as to why I have these symptoms which is awful.

I started with all this when I was 17 now I'm 20. It all started after a virus which left me seriously ill for a couple of days. I had vomiting, stomach upset/aches/abdominal pain, slightly runny nose, very high temperature, deleriousness and extremely painful down my spine from head to my feet. I do tend to think it certainly had something to do with that virus but doctors just shrug it off and say that it was 'just a coincidence', though I disagree. How would they know? My parents tried to call them out as I was so ill but they wouldn't even come out! Now they have the nerve to tell me it's 'just a coincidence'! I have some suspicion it could've been a mild form of viral meningitis as I've never been so ill before.

I have had MRIs, x-rays and a CT Scan, including Nerve Conduction Study and EMG. I haven't had any other tests yet. I have considered having a discogram as my MRI scan shows degenerated discs which the radiologist said was unusual for a young person but the spine specialists didn't take that much notice of these degenerated discs, considering that the radiologist did. They only told me of the fact that my discs 'look a little dehydrated'! I still think that I am getting the pain from these degenerated discs and the Schmorls node but they haven't done any tests to confirm that these degenerated discs are the culprits of the cause of the pain and sensations. I would've thought that a discogram would've been the obvious choice if degenerated discs show up on MRI like mine does. Basically I feel like they are just dismissing my symptoms and the possible cause which could be the degenerated discs. Some people don't always get pain or sensations with degenerated discs but the fact that I do have pain and sensations and these discs have been shown to be degenerated on MRI, I would've thought that at least one of these so-called medical professionals would've actually worked it out that these might be causing all my problems.

I have had doctors say that maybe I have a brain (as in brain sending wrong signals, etc) problem, which I suppose it could be but they shouldn't just assume it until they've actually conducted some brain tests as well.

I also asked my doctor about vitamin B12 deficiency as I have heard this can cause nerve problems and bone degeneration but the general physician and also the one spine specialist said that I hadn't got it as he said I'd have digestive problems such as a bad stomach like Celiac disease. Strange as it doesn't say that in the symptoms. It just says that some people are prone to it due to not having enough intrinsic factor but that they wouldn't notice it in otherwise healthy individuals. It does state that in some people the first symptoms can be nerve and neurological symptoms such as leg and lirab symptoms. Basically the general physician is guessing that I don't have it which he did do before on something else I had and it turned out to be more serious than he had guessed which I think is very dangerous for patients. It's not worth guessing. Why doesn't he just do a test to rule it out then to prove to me that I haven't got it? It would at least put my mind at ease as I'd know that at least that one possibility had been ruled out. I can then be happy knowing it isn't this. It all comes down to money in these physician's eyes and they just can't be bothered with their patients as far as I've felt like they acted when ever I've ever gone to them with illness.

I went back the one time and the general physician said that medicine doesn't always give an answer to patients' symptoms. Yes, that can be true in some cases but I'd have thought in this day and age they'd have actually been more up-to-date on knowledge to deal with tricky medical problems and new tests for them. I also said that there has got to be something wrong somewhere or I wouldn't have these symtoms as it's my body telling me there's something wrong. He disagreed. My spine specialist didn't though. He said that he totally agreed.

I've had this feeling that general physicians just think it's 'in my head' as they can't see anything as my tests have come back 'normal' apparently, apart from the degenerated discs on MRI which they seem to think is 'normal'!

My spine specialist is now ordering an MRI of my brain, Cervical spine and Thoracic spine to rule out any trapped nerve or problems in these areas.

He is then going to ask my general physician to send me to a Neurologist and a Rheumatologist to rule out further conditions that could be causing it. At least my one spine specialist is not just completely saying it's in my head.

Though I have no idea what I'm going to do if they can't find anything. The only way I'm going to be able to cope with this is by not doing anything that makes my body tired and achy or that sets the pain off.

I hate feeling like I am going mental just because I'm in pain and no one can find the cause. I know exactly how you are all feeling. It's such a horrible and debilitating feeling.

The one thing I will say because I believe this is true in some way is that because these doctors haven't had to endure anything like we have here where no one can find the cause they don't know how to deal with us in a sensitive way or what it's like to feel like this.

My general physician offered me anti-depressants but I didn't think I needed them as I don't feel like I've got depression, just fed up but not depressed. These doctors just don't know what to do anymore. They don't know how to handle complicated medical conditions such as back pain or nerve sensations without a known cause.

The strange and most ridiculous thing I've ever heard to come out of a doctors mouth was what my general physician said. He said that he didn't want to do any tests because he said that it'd only worry me more and make me feel more fed up but he is totally wrong as it would actually do the opposite! I would feel a lot better knowing that at least they'd done all the possible tests that could be done to help rule out or maybe find out the cause of my symptoms. I did explain this to him but he just refused to listen to me which I thought was rude and I am now going to see another different general physician and ask them for these tests and if they refuse, I'll have to just complain about the fact they aren't helpful or supportive in helping me with my condition. What's the point in having all these tests available and not be sent for them if it may help either rule out or help diagnose your condition? I just don't understand why my general physician is so rude and doesn't listen. I thought they would've became doctors/general physicians to help patients, not ignore them? I have absolutely lost most of my faith in these so-called medical professionals as they aren't pulling their weight most of the time. They leave the patient to fend for themselves which is wrong.

This same general physician and one of his colleagues ignored my back pain and leg sensations and said that it was 'normal' and 'just a sprain or pulled muscle' for a while and due to this I've suffered this for 3 years without even being able to see a spine specialist! It was only when I pushed to see one that he finally sent me for an x-ray and it showed more than what he had anticipated or should I say guessed. He then had to send me to see a spine specialist as it was in need of an opinion and investigating.

At the moment I am waiting for the appointment for the MRIs. Currently there is no known cause for my symptoms, according to general physicians and the spine specialists.

I hope that you all get an answer in the end as I know that it is just awful when doctors and specialists can't pinpoint anything causing the symptoms.

Good luck with it all and sorry for my long post but I just felt like I'd share my experience as I too am going through these frustrating and uncertain symptoms.

I am sorry I can't really say much that will make you feel better but I hope you find this a bit helpful and to let you know that you are not alone in this.


Best wishes to you all

Niad
 
Hiya sunshyne,

Yea, when they go through the front to do a fusion it is called a Anterior lurabar interbody fusion. Docs choose that way for certain reasonss. And it is easier to recover from than the posterior fusion. A crockpot will be good :) Have you had a consultation with a surgeon as of yet? You did have a discogram right? Keep in touch and lemme know what your surgeon tells you and good luck and hang in there!


LYNN
 
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