I have suffered from back and leg pain since I was 17 after a virus infection.
I have had various tests, including, X-rays, MRIs and Nerve Conduction Study/EMG of my left leg (but not the other side for some reason even though both legs are effected).
The X-ray radiologist report states that I have multiple disc degeneration in my lumbar spine and maybe facet joint degeneration. The MRI of my lumbar spine and pelvis radiologist report states that I have disc degeneration with a Schmorls node at Grade 3 of the degeneration process.
Now what puzzles me is every spine surgeon (I've seen two so far) have said that my spine is normal and looks good! They cannot help me as there is, according to them, nothing wrong with my spine. I've gone to various GPs and each one has made that dreaded comment of "It's just in your head" and also a Rheumatologist has also suggested this but I don't believe them at all as that seems like all they can say as they have nothing else to work on. This Rheumatologist was so quick to say "there's nothing wrong with you" without even bothering to order ANY tests which I totally dissagree with. How can they say without doing tests what I have and have not got? That is complete stupidy perhaps on their part.
Is it me or are people who have back pain or other illnesses (but particularly back pain) taken for their pain being 'all in their head' as I feel so confused and a little discriminated against personally?
How come all of a sudden so quick these so-called medical professionals say "well there's nothing wrong with you" when the radiologist is the real professional who actually reads images all the time? Basically they are ignoring the radiologist's report and making their own ideas up. I'd have thought they'd have actually read the reports at least and then come up with suggestions in relation to what the radiologist has said?
Anyway, I just wondered if anyone else may have been told that their spine looks perfectly fine and that their pain is "all in their head" even though their radiologist's report says otherwise. It's something I am actually looking up as it just seems so common.
I appreciate any experiences that you may be able to share and any advice too.
Thats a tough one-
I dont know what in the world you can possibly do other than go for another opinion, which it sounds like you've done. But sometimes the 4th and 5th "opinion" finally come through...
Maybe youve just really had bad luck w/doctors and havent seen the right one yet- It is odd that one would tell you anything is in your head before doing tests. Especially a rheumy because there are a lot of conditions that rheumys treat that ARE VERY hard to diagnose!
Sorry youve had no luck! I hope you have insurance/ some way to seek out more opinions!
I do find it strange that a rheumatologist would just brush my condition off as my GP/doctor asked him to do some more specific tests, not to just tell me to go away and the funny thing is he had a go at me for not agreeing with him and told me he is not going to write any sick notes out for me and said he would make me go to cognitive behavioural therapy if they offered it! That in my opinion is saying that I am imagining my pain which honestly I know I am not and why would I want to imagine pain? I think these doctors really are the ones that need to have a day in the life of their patients as they don't understand.
I have only seen all these consultants in the same hospital so maybe it would be a good idea to go to another hospital entirely independant so that none of the specialists are biased.
I have seen one neurosurgeon and he said that there was nothing he could do and didn't really seem at all worried about the disc degeneration that I have at this young age even though the radiologist stated that it was unusual. He said that there was nothing he could do and that was about it and now he's left the hospital anyway. What I did find strange about the neurosurgeon is that he didn't seem at all bothered about the fact I have this bladder problem that my urogynaecologist thinks may be linked to my spine. I thought bladder problems were a 'red flag' and were supposed to be an emergency?
I wasn't really happy about his opinion anyway after the first visit so I think I need to get a few more opinions until I actually find one that I do agree with or am at least happy with.
The reason why my GP/doctor sent me to the rheumatologist was because I am also getting a red, raised rash that is a bit itchy which spread across my cheeks and also my nose so he wanted to rule out Lupus which can also cause spine degeneration. I've had this rash now on three separate occasions and this rheumatologist didn't tell me what it could be or answer any of my questions as he'd basically made his mind up before I'd even got into his consulting room. I came out of that consulting room no better off for answers or even a few tests as he thought I just was wasting his time and that all I'd come for was a sick note even though my GP/doctor had written to him asking him to do a few tests for him!
I did notice that the consultants didn't really look at the report until I said about it and then they showed it me.
I am definitely going to see a few more consultants, including a new rheumatologist as I think the one my GP/doctor referred me to was one of the worst for bedside and brushing people's symptoms off I've ever met. I honestly don't know how my GP/doctor could say "you're in good hands with him." before he referred me! I never felt like I was in good hands! I left nearly crying! That's not in good hands at all.
YES definitly see a NEW rheumy AND A NEW neuro...
Its amazing the different opinions you can get from different doctors, but the fact is that you are in PAIN and PAIN is what the human body USES to alert us that SOMETHING IS WRONG, and since you arent chasing imaginary pain, there is something going on SOMEWHERE.
I believe from what youve said that it is probably stemming from the spinal issues, and I think you need to see another neuro as soon as you can.
NEW neuro/NEW practice!
Physicians under diagnose people all of the time, its a fact- And you hear a lot of it on these boards. People will go to doctors who try to tell them pain is all in their heads JUST to finally see a doctor who sends them into surgery the next week. Its crazy- but thats why we, as patients have to listen to our own instincts and pain levels and GET THAT 2nd (and sometimes 3rd) opinion.
You WILL find a doc who can help you, it just takes a little while.
It isnt even that uncommon to have to "search" for a diagnosis anymore, oddly!
BUT, definitly look up the neurosurgeons in your area (or call your insurance co and see if they can recommend one) and go see what he/she has to say. I think this will help big time!
Are you in daily pain? Is it an "on and off" issue?
yes go get another second, third ect. opinion. I have went through many and finally got someone that is pretty good. At least letting me know there are alot more tests out there and that some people have stuff without any pain at all and on the other hand people show nothing and have severe pain ect. Hang in there and don't give up!
Hi, jenius and monkey5 and thanks for both of your help and advice.
I totally agree pain is what the human body uses to alert us that something is wrong. I have tried to explain this to some of the doctors but they said it isn't always and that I could be imagining it and that is when I decided to walk out of their room! I knew as soon as they said that that I was not being heard and not going to get any closer to getting to the root cause.
I'm currently looking for some neurosurgeons but it is quite difficult to find any with any recommendations as I don't really have anyone that I can ask here in the UK. I think a lot of it will be on chance and luck alone.
I agree, it does seem like they under diagnose. I have had discussions with my mom and she unfortunately believes them anyway! I think it would be best to do what I think is right and, like you said, follow my instincts as I am the person with the problem so I know my body and what it is going through right now.
My pain is an on and off issue, though I do have it chronic as it doesn't completely disappear, it just gets more bearable on certain days and nearer and at my time of the month it gets so excruciating with such severe sciatica I cannot stand up or sit down either. It also sometimes disturbs my sleep as I am now getting sciatica on both sides so I cannot win by trying to lie on the opposite side as the sciatica starts up again. This along with my bladder problem really is tiring me out and I look exhausted now and feel it too. I have to get up and go to the toilet about 6 times in one night every night.
I find it strange how the internet lists plenty of tests for back pain to try and find out the exact cause yet my consultants that I went to never even mentioned them as if they didn't know much about what tests are available and what they can help to diagnose or rule out. I'd have thought as I have degenerated discs they'd have arranged a discogram as this would certainly give them some sort of idea on whether it is discogenic pain or other sort of pain and would also be proof that it is not in my head!
That is very true, monkey, some people do have pain without showing damage and some do not have any pain yet show damage. Sometimes I have often wondered if it's got something to do with different people's pain receptors as everyone is different and one person will be different to the other in their presentation of symptoms and severity.
It does seem like quite a few people have got through quite a few consultants before actually finding one that is willing to let the patient be heard and try all they can to help find out what may be causing the symptoms that patient has.
I agree with everything both of you have said and will certainly be looking for at least two new neurosurgeons and a new rheumatologist too.
Thanks for both of your posts and I'll keep you posted.
hi there, not too good of a day here again. I started pt for my back today and omg. I put a call in to the good ole dr. because the two things my pt had me do well lets just say the meds and injection is not having any effect. I swear if pt makes me worse again i will not go i already had months of pt and somehow they make it worse, i just keep thinking maybe it needs to get worse before it gets better? But it stinks
take care, monkey
I am sorry to hear you are going through this, as I went through much of the same in the past. Although I was in pain & had such bad muscle spasms I could not get a doctor to take me seriously. My problem was in the cervical, although I have lumbar issues also. It took me forever to get an MRI done & then all I heard was its not showing enough to be causing all these problems. I had doctors tell me it was in my head & put me on antidepressants because according to them I must have been depressed & did not realize it.
you know your body & its sending you a message. That very same location in my cervical that they considered minor I am now recoverying from surgery on.
To top it all off several things were found during surgery that did not show on the MRI. If I had to go back I would insist on a discogram at least. Let the doctor know that this is taking from your quality of life here.
I think what happens at times is the MRIs may indicate a problem that sounds like something major to us but is minor to the doctors. Also what appears on film may not account for the symptoms or the severity of the symptoms. Surgeons (I believe) can read the films. In my opinion doctors depend on MRIs to much.
I really do feel bad for you & its a nightmare when you know something is wrong & cant get the doctors to listen. I have lost faith in doctors & working on that trust factor even now. good luck & I hope you get some where soon.
God bless, Sammy
Monkey, I was put on pt too and it was apparently supposed to not hurt me and make me recover even though I haven't had anything done and didn't need rehabilitating. It too made me so much worse and because of that I gave it up as I didn't think it was improving my level of pain or helping particularly as I don't think I need it and it's just not worth the pain it gives me which I have to recover from for weeks on end. I've always found my back problem is so much more tolerable if I don't do physical stuff or sit for too long. Maybe the best thing to do is speak to your doctor or consultant who arranged the physiotherapy and talk to them about how it is making your pain worse and see what he/she says as they may then be able to arrange something that doesn't make the pain worse or perhaps relieves the pain. I have heard that land exercise puts more strain on your body and back and that exercises in the pool are more effective in not causing pain to get worse. I have considered trying pool therapy but not until I've got a good doctor and know what my back pain is stemming from. I'm not sure on the getting worse before it gets better as I used to wonder that too but was scared that pt would make my back worse than it is which is why I stopped going as none of the doctors diagnosed me or gave me any evidence in which to believe this to be effective for my particular case.
Sammy, It took me about 3 years just to get my doctor to actually send me for a basic x-ray as at first they sent me to pt without even investigating it first! When my family doctor read the x-ray results out to me he looked a bit guilty for ignoring and not listening to me for all that time and he told me that working would not be in my best interests as I asked him if I could work part-time but he advised me against it and then referred me to a spine surgeon who never bothered to see me and sent me to his pt for the opinion rather than bothering to see me himself which I found odd so I decided to go back to my family doctor and he actually though this spine surgeon had seen me! I told him and then he wrote another letter to the same spine surgeon asking him to see me but the spine surgeon just ignored it and still has to this day. Incredible! I certainly wouldn't want that spine surgeon to operate or even see me after the way he treated me! I then got an appointment out of the blue asking me to see a different (locum) spine surgeon! This surgeon arranged MRIs of my head, neck and upper back. I still don't know the results of these as I am now waiting (been waiting for 8 weeks or so) to see another different surgeon due to this one leaving. I have been told that too where they say the MRI doesn't show enough to be causing the amount of pain but I have read that MRIs aren't all that accurate and I certainly agree with you, doctors and spine surgeons in general do tend to rely on them too much and tend to make the final diagnosis from them too. All of the spine surgeons and my own doctor have so far only relied on the results of the MRI and that's it - they didn't ask me if I would perhaps like to go ahead and get a discogram or other tests. They also didn't really involve me in my own care considering it's my body. It's awful when doctors say that it's in your head which I tend to think is a bit of a way out rather than saying they don't know what is wrong with your back/body - it's an easy label just to say to their patient to end all the doctor's time in trying to find out what is wrong. That's what I can make out evertime I've ever seen them. Unfortunately I did let the doctors know how it was affecting my quality of life and the rheumatologist and spine surgeons but they didn't acknowledge it and said to live with it and that they can't help me as there's nothing there and that they'd consider sending me to cognitive behavioural therapy and give me antidepressants! I'm not depressed and they thought I was depressed! I refused their offers and walked out of their room. I am totally with you on the faith part too. I have also lost faith in doctors and it's such a shame as they are apparently there to help us. At least I know you people on here are there when I need you and you understand exactly what I am going through and I thank you all for that.
Currently:Searching for another spine surgeon and rheumatologist.
I totttaly agree that they shouldn't send you to pt as it seems like it could make matters worse if they don't know what thier treating. We need to be very stubborn and pushy these days and get out point across. Someone does not just wake up at my age and have to have help getting up for no reason. There at the least i would think there would be arthritis ect. Maybe when the pain dr. sees me all huddled over and not being able to stand up straight he will do somethig if i not i have an upcoming MD appt. and i will void this dr. I have about had it with the healthcare system ect. We pay for it one way or another, my husband pays taxes despite me being on disability. Like i wrote the government, of course one would be depressed if thier not getting the right care and i don't want to be on disability longterm, i want more out of life than this if possible, and if theres no reason for my pain then i should be able to walk sit ect. to the best of my ability and yeah maybe have to be on pain meds but at the least i would like to know why. Boy have i had a rough week en a half! I need to rest write more later when i can, i am so fused that there are so many of dealing with these issues.
It really sucks when you get a setback where your back gets more painful. I do wonder if the cold weather has something to do with it?
I agree, we do need to be stubborn and pushy but the last time I did that was when I saw the rheumatologist and he just thought I wanted a sick note! He didn't know why I had been referred to him which I found strange. I've never had any time from any doctor that I've ever walked out the room feeling happy and listened to. It, in my opinion, is a very lucky and luck of the draw thing when people do get a great doctor. The thing I've noticed is whenever I've been a little pushy in as nice a way as possible, they then think that their patient has got anxiety and try to prescribe antidepressants! So far I have never achieved what I set out to do with these so-called medical professionals. I'm still at square one, no further forward than before I even saw any.
I absolutely agree, if you have to have help getting up then there has to be something going on that needs investigating.
I too have totally lost complete trust and faith in the healthcare system as it just doesn't work most of the time. It's been 3+ years and yet I still don't know what is wrong with my back and that says a lot about the current healthcare system. Why should people have to pay for a less than satisfactory service? They shouldn't.
I absolutely agree, one would be depressed for not getting the right care as they can't move forward if not.
Exactly! If there's no reason for your pain, you should be able to walk, sit and do all the general things everybody would do on a day-to-day basis. If someone is in pain and it is limiting their day-to-day life then clearly there is something wrong and it needs prompt investigation which unfortunately some doctors fail to do, like my rheumatologist. I will not be a happy bunny if, in the future, I find out that I have something and because I wasn't tested about so many years ago by this rheumatologist, it has destroyed an organ in my body, etc.
Got to go now too. Thank you for your post. At least we, as a patient community, can help each other out as best we can. We all know what each other are going through and that counts for a lot in itself.