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MRI clear - Next steps? Pet scans?

AmySanAAmySan Posts: 6
edited 12/09/2014 - 2:07 PM in Lower Back Pain
Hey everyone, I'm Amy - I'm not sure the whole process on introductions first, or how this works...but I was glad to find a community where we all are in pain, and can truly relate.

I have RSD in my right foot, from a cut that needed stitches. I have had depression for half of my life (i'm 28, so around 14) and have quite the history of self injury - which led to this terrible condition - since then - May 2013 - I have abstained from any of that. But I still see my Psychiatrist, etc etc.

Anyway, so that was a fun way to get RSD..CRPS...whatever you want to call it now :)

I was on 210mgs of oxycodone at one point (yes...from a new PCP, not a pain dr) It went from 10 mgs to 210 mgs a day in about 5 months.

I went to a pain doctor, who got me off of all medication, and nerve blocks worked. Then they stopped working, and he did a nerve ablation - this actually helped my foot, but started lower back pain around the injection site.

2 months later, I was out driving around 11:30 pm to clear my head...June 1, 2014...I'd had a miscarriage and this was my due date, would have had a one year old. I just wanted to drive and listen to music.

I was turning left, had a green turn arrow, and some guy literally came out of nowhere and almost dead on t-boned me - fortunately he missed by a foot or so, or I probably would be dead. Airbags deployed, it was terrifying and then excruciating.

Luckily (kindof) When the police asked me what happened before the ambulance arrived, I was bawling and just choked out that I had a green arrow. The guy then said he wasn't paying attention.

I was taken to the ER, where as many of us with chronic pain know is a terrible place to be - the dr there gave me a percocet and did a ct and xray, wouldn't give me a script (my visits with RSD pretty much ruined that) Then sent me home. Everything was normal.

My PCP at the time was the one who had me on all of the oxy - he had since stopped prescribing pain meds altogether because the encounter with me scared him so much. So he told me to just go to the hospital. Literally, he sent me to the ER about 5 times. Fed up and the ERs finally said no more, I got a new PCP and found my wonderful pain dr I have now.

SO now I am in PT 2-3 times a week...where they are starting to push me too hard...my medication (50mcg Fent patch, 10mg Perc, 30 a month) are really just keeping me at my threshold - if that. It is so painful to do ANYTHING - and even though these exercises I used to be able to do without thought - it just hurts so much!

I had an MRI and we were able to compare to a prior when they were diagnosing the RSD - it is 'Beautiful'. GREAT!

So I'm 28 driving around with a handicap sign, and my MRI is fine - I'd kill to be able to have surgery to fix whatever is going on with my lower back - but, no dice.

I've heard of these PET scans. Has anyone had them and found something that wasn't on the MRI?

I also have to switch to Kaiser since my Cobra runs out in April - so I won't have my great doctor...I'm so scared about that. I really want to have kids sometime soon (a significant other would help) but, i'm running out of time.

Also, with my medication being so baseline effective, and this wonderful Colorado weather killing me - I'm afraid of what's next at Kaiser. My PM Dr doesn't want to touch my back with a needle because of nerve overstimulation or overactivity or something.

Long story long....

What have you all done when everything is normal, but YOU aren't?

Thanks everyone <3
Hugs, Amy

Chronic back pain post MVA, RSD right foot


  • dilaurodilauro ConnecticutPosts: 9,833
    the amount of narcotics you were taking on a daily basis was so very close to be lethal.
    EMS Drug Whys said:

    For chronic pain in opioid-naïve patients, initial oxycodone controlled-release tablet dosing is 10 milligrams orally every 12 hours, titrated up to 40 milligrams every 12 hours based on patient response. The maximum daily dose (MDD) of oxycodone is 80 milligrams and maximum single dose, 40 milligrams in opioid-naïve patients.
    And for Oxycontin, 180mg a day would be more than most humans could handle.

    But 210 mg of Oxycodone a day. Hard to imagine why any sane doctor would prescribe that
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • MaryAnne59MMaryAnne59 Posts: 57
    edited 12/09/2014 - 4:04 PM
    Maybe your pain is muscular or inflammation? Have you tried taking NSADs? I was wondering if your pain Dr (with a history of RSD) has you on Lyrica, Neurotin or any of the anti seizure meds used to treat RSD. They are more effective than opiates in treating RSD. Also, I think physical therapy is a must. Maybe aqua therapy would help instead of what you are doing now. I don't know about the Pet scan??? A CT scan would show bone issues more than an MRI. But. you had both and they are normal, Hopefully, you will be feeling better soon. A negative MRI is a good thing!!!! Surgery is no picnic and made me much worse.Plus, a surgeon would be reluctant to operate on you with your history of RSD, You want to avoid it as much as possible. I will be praying that you get well ASAP. Take care, Mary Anne
    Take care and God Bless,
    Mary Anne
  • Dilauro - I know...it was pretty crazy - He was a newer D.O. - not young but he didn't really know - and my pain was so out of control that, he didn't know what else to do. This happened pretty shortly after my miscarriage, in which I wanted to avoid surgery - so I did the medication to pass the baby - which is extremely painful, since it makes your uterus contract, etc - so I was on Percocet during that time - well, at my follow up, there was still retained placental tissue, so they had to perform a d&c - more pain meds - then another follow up, a SECOND D&C had to be performed with ultrasound simultaneously - My OB has only had that happen twice in her career (mine being 1) - following that procedure, I still had this sharp pain that wouldn't go away - I was medicated this whole time, then admitted to the hospital, and they did an MRI with contrast and found a mass in the right quadrant - My OB had to get another OB in with her so they could do a Lapero and Hysteroscopy - after that, pain got better - but something that should have taken like, a week lasted 2 months. So by that time, I was pretty tolerant to pain meds. I think that is probably the only reason I didn't die with the 210mgs of Oxy a day - my tolerance was to the point that one night, pain was so out of control after putting on an Ugg slipper while barefoot, that my mom raced me to the ER and they administered 10mgs (2mgs at a time) of Dilaudid over the course of 3 hours - the Dr said that 4 mgs would kill most people. And even then, they asked if I wanted to stay to do more - But it just wasn't helping enough. So I left - The doctor told the nurse he hoped he didn't kill me in the process. It was SO bad last year.

    Once I got the nerve blocks and it helped, I was switched to suboxone to taper off - and that helped - then finally was off of everything for a while.

    MaryAnne, Unfortunately Nsaids really don't do much for me. it's odd, for things like menstrual cramps or a headache - ibuprofen is a lifesaver - but for my back and RSD - doesn't do much of anything. Then acetaminophen also isn't much help - and I have to be careful with it, I chose that as my 'way out' several times - within 2 years I had overdosed 4 times on it...taking 50 extra strength on 2 occasions, and 100 regular on another 2 - all 4 times of course I was eventually brought to the hospital and put on the antidote IV...The ICU Dr told me last time that I must have a good relationship with god, because my liver bounced back and was perfect. I don't know how, but I am grateful for that, and to not have died.

    I was in so much pain that it was hard to stand it, and then when some other personal things came up, I was very quick to do that. Not proud of it - doing much better in that sense now, and hope to write a book one day.

    I did try Lyrica - it didn't help much, and then my insurance wouldn't cover it - so that was the end of that, lol - I pay $700 a month for Cobra, so paying hundreds for a medication - unless it realllly helped - isn't happening :(

    Then Gabapentin/Neurontin - oh my goodness, for about 3 months I was on an insane amount - I don't remember, like a thousand something - they kept wanting to go up on that - but it made me really sick, and felt really out of it. I gave it a good try, but it also didn't help the RSD.

    Thank you so much for your prayers <3 I really appreciate that, and will pray for you as well!

    You're definitely right about the surgery and RSD - I keep forgetting about that part - that the chances of it occurring again elsewhere are high. And I think my thoughts on wanting a surgery have been like - at least there is a chance of a promise that it will get better, and in a timeframe...not just, 'who knows' like I am at right now. My Pain Dr is also reluctant to do any blocks or needles on my back given the reaction I had to the nerve ablation - which is smart...I'd hate to get worse than I am.

    I have this compound cream for my foot, with Ketamine, Gabapentin, and a bunch of other things in it that when taken orally would just give you a bunch of side effects - it helps my foot a LOT with the skin sensitivity - I would recommend asking for it to anyone with RSD.

    I think you're probably right, that it is muscular in some ways - and probably nerves...but I just want to SEE exactly what is doing it - it's frustrating not being able to see or know what is making you hurt so much, and not being able to do anything about it but wait.

    AND if they had Aqua PT, that would be amazing. Because that I think I could actually do and tolerate. Not sure where I would find that, but that would be wonderful. I just dread PT now...At first they did a ton of dry needling and pushing/massage like things/ cupping - and I know they want me to get better, and I won't actually hurt myself doing the exercises...it is just I can't tolerate the pain..then, or afterwards. I feel pretty stuck.

    So my new pain Dr also doesn't know 100% if I have RSD - I had a positive bone scan last year, and of course all of the symptoms - I couldn't see the coloring, but my old pain dr could - that part was mild - but now, it isn't the same - it is more 'inside' of my foot - sometimes it feels like it is broken - but touching it doesn't hurt like it used to, unless I push on it gently - otherwise I just feel it throughout my day. I'm wondering if the Nerve Ablation really did 'fix' it - It still hurts..and gradually gets worse as it has worn off...but that was over 6 months ago now...The dr had told me that he was burning the part around the nerve, not burning it off completely, so it would grow back and I'd potentially need another in 6 months.

    Before RSD was diagnosed, a podiatrist thought it was Baxter's nerve entrapment, tarsal tunnel syndrome, peroneous longus tendonitis, hairline fractures on 3+4 metatarsal, and then to WATCH for RSD. After I quit seeing him because he basically said wear a boot and we can't do anything, I went to an ortho dr...they said it wasn't any of those things, except RSD.

    Back to the PET scan - I don't know much about them - I've met my out of pocket max, though, so it would be free - I don't know if it would help potentially to see what it would show - I'd love to at least see something in my back and understand that OK this is what is going on. I've done the Xrays, MRI and I don't think they did a CT of my back, but an MRI is more telling anyway, right?

    On a side note, will look in the medication forum, but the fent patch has been a lifesaver, truly. It's just the 3rd day it really doesn't help as much...I know that it drops off quite a bit that day...and really want to try them every 2 days rather than 3...I've HAD to change them a few times in past early, as it gets to the point I cant stand, and percocet just doesn't help enough. Plus - the ups and downs of percocet are not fun - mood wise. Any of the pain pills really. But having something for BT pain is a must. Would be nice to not LIVE in BT pain though, lol.

    Ok, I just wrote half of that book..sorry...It's nice to talk to others who understand.

    -Amy :)
    Hugs, Amy

    Chronic back pain post MVA, RSD right foot
  • sandisandi Posts: 6,343
    edited 12/12/2014 - 4:54 AM
    Are you in physical therapy for your RSD? If not, why not? The absolute worst thing that you can do with RSD is not use the limb, because it only serves to increase the hypersenstivity of the limb. I have had RSD in my right shoulder, eventually loosing the use of the shoulder, arm, fingers and hand.........the ONLY thing that helped was physical therapy, no matter how painful it became, to help desensitize the area....and eventually, was able to regain the use of those limbs for the most part.
    RSD is painful, causing changes to temperature senstivity, hyperalgesia and a whole host of other issues, but if I were you, I would find someone extremely familiar with the treatment of RSD , and see them........the sooner , the better. It took me 7 years but it was the best thing that I did for myself.
  • Hi Sandi,

    Yes, I am in PT 2-3 times a week - Given it is in my foot, I don't have much of a choice but to use it, so I'm sure that helps it some ways - We have focused more on my back lately, they seem to have limited resources where I go for RSD - they use some type of laser thing, which is attached to my foot foot for a while - since I had the nerve ablation, the sensitivity I used to have to hot and cold particularly water is gone, and it isn't as bad as last year - but I agree it is important! My dr is very familiar with it, so I know he is doing everything he can for it - the compound cream he prescribes helps quite a bit for that area of pain. Your experience sounds awful. My old doctor said it was good we caught it 'early' even though it didn't seem early to me after 6 months, but compared to 7 years, that makes sense!
    Hugs, Amy

    Chronic back pain post MVA, RSD right foot
  • and that you are seeing the benefit of it..........My physical therapist recognized it before my doctors did, and then it took me about 18 months to actually find a doctor who knew anything about it.........so it allowed it to progress , spread and worsen.
    Thankfully, after a long battle, I am in "remission" but still have some limitations as far as that limb goes, but nothing as bad as it was when I lost the use of it and the atrophy that accompanied it.....
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