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anyone else referred to Rheumatologist for spine issues

hotcoffee29hhotcoffee29 Posts: 327
edited 06/11/2012 - 8:48 AM in Chronic Pain
I finally got the results from my new cervical and lumbar mri's and the neurologist upset me by just reading the reports and not even looking at my films after he insisted that I bring the films so he can interpret them for himself.

I have multiple levels of arthritis and facet joint arthropathy, herniations at C4-C5, disk bulge at C5-C6, herniation at T12, enhanced fibrosis at laminectomy site (L5-S1) and within the spinal canal adjacent to S1 nerve root and bulging disk at L4-L5.

I have severe pain every day and have been searching for answers and a fix to my problems. Neurologist refuses to give me anything for pain saying that narcotics just cause more problems. So he has referred me to a rheumatologist and says I need a complete work up from him and go from there. He has also referred me to PT 3 x a week and I can return to him (neurologist) in 6 weeks if I feel the need to.

I don't know about some of you, but I feel like I just get tossed from one specialist to another and all of this takes time, it's weeks between appointments and in the meantime I am no better and always have pain and I am very frustrated. My hip pain is getting worse and the neurologist thinks that my hip pain is causing my leg pain and not my lower back and no one has mentioned my neck pain, just deal with it I guess.

So I have an appointment Tuesday with rheumatologist and we will see what he says.............and so the story goes!!

Sorry folks just venting and wondering if a rheumatologist has helped anyone else out?

Thanks, Sandra


  • Hello Sandra...I am so sorry that you are in the getting juggled around stage!! It makes you feel like NO one takes your pain seriously...doesnt it??

    If you need to talk or vent more you can PM me also:)

    Stay strong and maybe get a second opinion from a differant Dr all together??
  • Hey Sandra,

    I would follow through with the rhumey doctor and who knows he/she might have some more complete answers for you. In the meantime have you considered seeing a physiatrist who can take care of all the pain? While a physiatrist won't work from a surgery angle they will look for ways to reduce the level of pain your having and making you more comfortable. I myself always feel blessed for my physiatrist as he can treat all my pain needs for example he put some knee injections in and today a lumbar injection along with filling all my meds. While it is not a perfect world I get some much needed relief.
  • for listening to me and for your compassion. Polly it is very kind of you to offer your ear and I may take you up on that!!

    Tamtam, I have thought of a physiatrist because I really don't think more surgery is the answer. I have had 2 in the last year and a half at L5-S1. I believe alot of my pain is a result of the arthritis and I have hip bursitis and just had a cortosone injection and that didn't help. I take gabapentin which has helped with some of the nerve pain but I still suffer with the back/leg and hip pain.

    I will keep rheumatologist appointment and then look for some kind of pain management. I do realize that there is no quick fix and the problems I have are all chronic and I do have to manage myself the best I can.

    Thanks for all your help
  • Auto immune diseases can cause joint pain and arthritis, which could be contributing to your pain. Always good to rule that out as a cause of your issues.

    Good luck and let us know,

  • I don't think a rheumatologist would hurt - I had read a bit about this for myself when I couldn't find answers to my pain. Although I do believe that rheumatism signs involve some sort of history or presence of infection - like fever, swelling, heat from the areas infected or something. Of course - I may be completely wrong and just babbling - but ultimately - I don't think it can hurt you to check out.

    My suggestion, however, would also be that you find some PM doctor or physiatrist who can help you lessen your pain, as someone else said above. While you're waiting for all the experts to work out the cause of your pain (and believe me, I understand the whole waiting game for referrals/appointments/tests, etc) - in the short term, you really just need some relief from all that pain. I don't know how you endure all that pain, with your job and all your family responsibilities. Medications, some nice massages from a PT (and I believe they have other good stuff to help temporarily relieve pain). Accupuncture. I well know that none of these treatments are a cure - I'm just suggesting get some of this stuff to bring the pain down, while you're waiting for the geniuses to work out the reasons for your pain.

    Anyway, just my 2 cents worth. I really hope you get some relief soon. All the best.
  • is probably the key to getting through the days, weeks, months ahead.

    I know there is no cure, I have many abnormalities in my spine that cause the pain but there is not one fix per say. P.T. should be helpful and get my mobility back. Its difficult for me to schedule these appointments as I am so tired after work that I just want to get home, not go to PT, but I know I have to do it.

    I feel I have been declining over the last few months. Could be a result of my 10 hour work days and family commintments with my children and lack of sleep. My neck pain has been worse too and I don't have any meds for relief besides tylenol and tramadol. It really isn't effective. If the rhuematologist can find something, great....perhaps he can help with the arthritis pain. It worries me that I have so much arthritis at 40!! But I don't have swelling or redness at any other joints. Its my neck, back and hip and ofcourse nerve pain in my leg.

    I know everyone here understands my pain because we can all appreciate that in each other and I find it challenging at work and with my family because no one can see your back pain, there are no bandages, no visual signs of all that is wrong and people find it hard to understand why you hurt so bad.

    I got on the floor today with a student who needed my help, it hurt so bad and I couldn't get back up, it was so embaressing!!! LOL

    Since I am just rambling away.....another finding on my MRI was Schmorls Nodes throughout my thoratic and lumbar spine, they are very visual on the mri. No dr has made any issue out of this finding, are they quite irrelevant?? Just curious if anyone else has this and if they have caused any concerns??

    I also have a herniation at T11-T12 and can't imagine how I did this, I have had no trauma, no car accidents. Just one bad fall down the stairs about 2 1/2 years ago.

    Thanks again for listening and for the support.
  • I know how you feel, when you didn't want to go to PT that day. There was one day in particular, I was in so much pain, I had left work early to come home. I had a pt appointment a couple of hours after I got home, and all I wanted to do was just get inj my jammies, take my meds and lay down. So I called to see if I could cancel, and the pt that owned the place answered and said "absolutely not!! if you're in that much pain, well this is the time you should be coming here". So I waited, couldn't take my IR med because I had to drive, and went. Even though it didn't help completely, it did help a little that day once I got home. But my poor therapist, when she saw me, felt so bad that he had said no to me cancelling, but did say it was a good thing at the same time.

    As for herniations, well, it doesn't take much to herniate a disc, especially if you have DDD. I herniated a disc just by coughing, no word of a lie. You could have just moved a certain way, coughed, sneezed or done anything that we wouldn't think about normally. Hope the rheumatologist can help you out, and you can get some sort of relief!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • It would seem to me that you need one MAIN Dr to over see your whole medical care and pain WHILE you are trying to figure out what "it" is and how to deal with it long term. Why this does not make sense to a Dr - confuses me.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • My pain management doc is a physiatrist. He quickly referred me to surgeon for my back. After my surgery I am back with him. He just did a hardware block last week that worked wonders. He said if the effect isn't long term he will be sending me back to the surgeon to remove the hardware. So while he doesn't do surgery he isn't opposed to the idea of surgery like many PM's are. Some will give shots until the cows come home to make a buck. As for the rheumatologist, they also deal with arthritis. Perhaps he is wanting to know what type of arthritis he is dealing with before he does something that could make it worse. I know it seems you are being passed around but maybe you should ask him why. Call the office and ask to speak to his nurse. Tell her you don't understand the rhumy appointment can she please explain it to you in laymans terms.
  • thank you all for such sound advice and just words of wisdom and comfort help so much.

    I am so confused and sore tonight and I have finally cried!! After 2 years of non stop issues, I finally shed a tear and I know I have to buck up and keep smiling.

    The rheumatologist was very kind and helpful but he hurt me badly!!! He pushed on spots that made me cry. So after the exam and looking at all my reports, he concluded that I have fibromyalgia and I still have the bursitus of the hip. He gave me 2 cortosone shots. One in my hip and one in my low back and a B12 shot for energy and took me of gabapentin and started me on Savella.

    I had a feeling this diagnosis was coming....it still depresses me though. Tonight I can barely walk it hurts so bad. I don't usually feel sorry for myself, I am quite a bubbly person actually so I know I will shake it off, it's the shock.

    I would still like to find one doctor to take care of it all and maybe I will eventually, but neuro wanted me to do PT 3 x a week, rheummy said no way. He couldn't move my left leg for the hip pain. He said I can do 5 mins of exercise in the a.m and again in the p.m. for the next month and then increase to 10 mins, it will take me 6 months before I can even manage 30 mins of PT.....I am always pushing myslef which is why I always hurt so bad and my 10 hour work days although the doctor said my smiley attitude is what will help me feel better.

    The doctor pushed so hard on the trigger points in my hip and buttock area to get these shots correct that the pain is so severe tonight and he told me it could get worse over the next few days, I don't know how I will make it to work at 5am tomorrow!!!

    Ok, enough whining from me!!!!
    Thanks everyone for just being there, I truly truly value the support.

  • Wow - sounds like a very big day! Good news/bad news kind of day. Good to get a diagnosis and then you can get treatment; bad to get a diagnosis and then getting the treatment.

    I'm really praying for you, Sandra. I don't know how you do it all - but I would just say to take it all one step at a time - try not to get overwhelmed by it all - as overwhelming as it is. Fibromyalgia is a big word! Anyway, just wanted to say - Take it easy. And when you feel like your head is about to explode - just say -- "One step at a time; that's all it is, one step at a time."
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