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25 years chronic pain have questions

river ratrriver rat Posts: 2
edited 11/20/2014 - 1:51 AM in Chronic Pain
Well first post after lurking awhile.
I do not really want sympathy, rather advice on my next steps.
I am a 55 male and was miss-diagnosed at 25 with Marie Strumpells diasese, and as time went on i stayed active to lower pain.
In 1994 i fell onto my buttocks ( thanks Forrest, Forrest Gump) when i herniated L-5. I went to local hospital where i was given an esi blind.
It worked for a while, went back for the series of 3 esi that was my Doctors orders, #2 esi, the needle was causing more pain than i already had which i told physician that's in the wrong place it hurts more, to which the reply was "shut up & hold still!"
that caused my r leg to instantly develop sciatica. 4 injections later same physician messed my left leg the same.
I have had 15 esi's, a coddles, facet injections under fluoroscope.
I currently have S-1, L-5, L-4, L-3, & L-2 herniated, muscle seizing pulling me off plumb and twisted, with Degenerative Disc Disease, sciatica down the back of both legs with 1000's of hot needles in the bottom of my feet, and good ole Arthritis on top.
Been to neurologists, had nerve conduction surveys, 4 surgeons, the last a month ago who told me what the rest have said, i am not operable. He said he could put a cage on my spine and screw each vertebra to it but it would be 80% bad, 20% good and would not recommend the procedure .
I went to a PM clinic that do the rfa procedure, and felt like i was in a meat mill, not a place of care, where i had a bi-lateral SI injection.
Upon getting off the table i noticed my legs were not working right, R foot pointed to L foot and walked like i had cerebral palsy according to my nurse girlfriend.
The nurse stated "you look like you need a wheelchair", i replied you are the nurse, "well walk back to the lobby and wait 10 min before you can leave".
I could not walk right for 4 days. When i called them they stated "well you were not walking good when you got here", but they did not see me arrive.

I have taken all the n-said, all the re uptake inhibitors, almost every opioid, the pills that worked i was taken off of by my primary as you all know the druggies are making it hard for us all!

Not comfortable with RFA, Or Pain pump procedure, my Primary has me on Hydrocodone with soma.
2 years ago this month my pain factored up by half and i went to see him. Could not stand, used cane, was twisted and bent left severely and asked for a different drug therapy as i was miserable.
He said no that i would just be in 6 months later asking for more powerful meds than i switched to, and did not even order an MRI.
so in the last 2 years my activity levels have gone down hill immensely. pretty much house bound, couch, bed, and pacing.
To be honest in the last year i have taken more meds than prescribed, i own that, that was my way of trying to head off the pain, it did not work.
My area does not have a surgeon, a pain management center, so everything is 4 hour round trip which i can not afford.
My primary is covering his you know and refuses to give me anything stronger.
He says it is wrong to ramp up my meds.

I really do not know what to do as i feel like i have jumped through every hoop, and taken every drug handed to me, and lets not talk about the side effects, went to every Dr, and surgeons, MRI's, CT scans, PT guy had me lifting 2500# every visit as "its good for you" felt worse after than when i got there, also did the snake oil spinal decompression, the works.
Mind you this has been a 20 year process, and i am done.
I do not want to Dr shop, and most of the pm centers do not want to prescribe.
I would like to have part of my life back.I feel like the medical system is broken, and i am just a number, and pay check.
I do not want to live the rest of my life house bound, and in severe pain.

If any of you can give advice, i would be most grateful!!
Also i must apologize for the length of this post, i was trying to get all the pertinent info in it.

G, also known as river rat



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Comments

  • waynashawnwaynashawn Posts: 3
    edited 11/23/2014 - 4:30 AM
    Edited

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  • I've pretty much always had osteoarthritis. The degeneration it's caused got really bad in my spine when I hit my mid 30's & it's got progressively worse over the last 8 years. Some years it's terrifying how much it changes. My lumbar spine is most crippling. From the bottom up it's completely bone on bone S1 - L4 (self fusing mess) L3 nearly there. It gets progressively 'better' as you move into my thoracic with only arthritis & degeneration, small herniations up there. I have tons of bone spurs. The joints are riddled with arthritis & compared to coral by a couple of my specialists. Facet & SI joint completely messed-up too. Hips going. Ugh!!

    I'm not going to start pointing fingers or blaming myself, that just gets me angry & depressed...I avoid that at all costs. The hardest thing I've ever done is dig myself out of that hole. Let's just say I fell through the cracks & I'm now in the situation that no surgeon will touch me. I've been to big hospitals & seen famous ones. I now see a surgeon (I'm lucky he's a personal friend of my PM doc) who treats top athletes. He assures me I won't loose the use of my legs or bowels but pain is nothing he can make assurances on. He won't cut until its an emergency.

    Where our situations really differ is I have great specialists. My meds, PT (I've NEVER lifted a weight with anything but my very upper body since this started!) natural treatments etc are carefully balanced. We 'tweak' things but only when it's right for me. I switch narcotic meds & blends regularly to tackle tolerance. I don't go out much, don't really have a social life but I can take care of my kids & have a laugh & cuddle with my husband. I chat to friends on line & hang out with neighbors on occasion. Life's ok. I've adjusted. I have my pity parties but mostly I'm doing ok.

    I know it's a nightmare seeing doc after doc. I know some of them treat us like drug seekers despite overwhelming evidence of our pain levels. I know. I know! I can't tell you how I stumbled across my docs. I live in constant fear that one of them will move or something & I'll be back to square one with a few hydrocodones to get me through the month. What if my PT retires & my insurance company insists I do months f regular PT with one of them that crippled me? I try not to cry over milk that hasn't spilt yet...

    I know it sucks. Between us & great docs there is the ability to improve our lives & it's incredibly frustrating when it's not happening. Everything was a nightmare in so many ways before I managed to manage my pain to a certain extent. I will always be in pain. The game is making that pain as manageable as possible. I agree so many docs are now gun shy of narcotic meds. The current climate terrifies me. I've lived the "I can't live another day" years & I CAN'T go back.

    I know I'm not being much help. I just wanted to say "I know & I'm sorry". I hope someone else has better answers. I just do everything I can to chip away at the pain & live the best I can for my little kids & family.
    Osteoarthritis & DDD.
  • Thanks English Girl,; that does help me.
    I am not wanting to go, and will not be the coward, but if it was natural it would not bother me.
    The "Health System" we have here is a Commercial hospital which has bought all the satellite clinics in the surrounding area to monopolize on the patient factor.
    I mentioned my partner of 14 years who worked for the only doctor who would alter my meds to keep an effective tolerance of pain available, but 4.5 years ago he fired every pain management patient he had.
    He even apologized to me, said he had to make it fair. I still have great respect for the man! For the 10+ years i saw him i never went off schedule with my meds.
    My major Problem is my primary refuses to do his job even to the point off no flu shots offered, no pneumonia vaccine, no mri when i was not mobile, most of the time we talk about his new jeep, his vacation, his work in Honduras, etc, anything to avoid listening to my issues.
    I want a doctor who will co-op with me and am very fearful of getting labeled as a Doctor shopper, or drug seeker.
    None of the Pain Management centers i can afford to get to want to do anything but esi's, rfa's. My primary said to me "that's where they make the money, they don't make money on meds". I was floored he said that to me, and was feeling like a dollar instead of a patient.
    Thank You for your honest reply!!
    G

    Sandi;
    I used the Dr. locator for my area, no hits. read a lot, been through most of the procedures, i do not think i will ever be ready to have RFA's, or Pain Pump with all the negative side effects, repeated process over and over, and dangers of PP is too high.
    I have been the test monkey for so many procedures and drugs with nasty side effects that made things worse with pain and interpersonal relationships, as well as body functions that it is a no brainier for me to make that call for me and say enough is enough. No more experiments.
    Thanks for the link!!
    G

    P.S. I forgot to mention that i do not use alcohol, Pot, or any meds not prescribed to me.
  • I know! HaHaHa I'm sorry but I really do. I live in a really new area. Old timers say they can remember driving past the population sign when it was just over 100 people!! Now it's huge. The big hospital group here owns some clinics & the same PM owns the rest. The group will NOT prescribe most narcotics. I went there, my doc got really depressed. We used to talk about how he wished he'd never moved to Texas & how guilty he felt about it...he went home!
    The other guys treated me for over 6 months before he said, "if there were something physically wrong with you maybe I could do more!". (please see my "physically wrong" above!) he never knew what he was treating me for!!

    I've got my horror stories! I looked at how far I could realistically travel & got a (correct!) list of docs that took my insurance. That took a lot of phone calls! Chatting to receptionists you can often get a good feel for the place. If they said things like "He does injection clinic 4 days a week. He's very experienced. He does thousands!", he would get a big question mark!! "narcotics CAUSE pain! He'll get you off of that stuff for a start!" I'd cross them off.
    Then I set appointments just to interview new docs. You're not 'Doctor Shopping unless you accept narcotic prescriptions. You can tell a lot by how you're treated.
    If you say you won't do anything but take narcotic meds most won't want you as a patient. Make a list of everything you've tried & everything you do to help yourself. Take all of your diagnostic tests & say "I just want to know what you would do to help me." That's my best advise.
    If you try not to get angry it's a very interesting process. It taught me how very different docs are.

    You've got a big problem. You found something that worked! As soon as you say that you do sound like a drug seeker. My doc looked at my 'pain history' & said "You seemed to be doing a lot better when you were on these meds why did you stop? Would you try them again?". In my case I had been trying to go 'natural' (huge mistake for me!) I think that counted in my favor.

    I don't know! In the current atmosphere it's so hard to get treated properly sometimes. I'm not saying narcotics are everything. NOTHING will take my pain away. I've been on HUGE amounts of meds & that was horrible too. If anyone can handle this without starting on the big meds GREAT!! But I'm talking to you & we seem to be in similar boats. I don't like narcotic meds but I'm not going to be a hypocrite, take mine & tell you that you don't need them! I do. I can't function without.
    Osteoarthritis & DDD.
  • hello river rat.....I feel your pain....I have been round and round the block with pain issues for the last 3 years....not as long as you but the rollercoaster ride has been devastating. I had a severe virus in winter of 2011 and in 2012 I had right foot/leg drag with muscle spasm, twinges, all around leg weakness....they told me back then I had myofascial pain syndrome. and I did not want to accept that this was just it....I saw a neurologist every 3 months for two years...he just passed me off as a psychological problem...I fired him ! but really I have never got a true answer. I still have extreme fatigue and my left knee weakness is giving me the most problems...I had a Bakers cyst for 2 months recently that painfully drained on its own but I am still dependent on my walker when out alone and a cane if someone is with me.
    I just have to accept for some reason my body has worn out before anyone else I know at my age, 59..for what ever reason, maybe because we moved 26 times in 25 years, we lived in the U.S. fro 18 years and I was constantly flying back to Canada every few weeks as my kids then were in school up here, we moved back to Toronto in 2008 , I was chief care giver for my mother and aunt for 5 years....or and I did have a diagnosis of Right orbital sarcoidosis in 2006 and was on Methatrexate for 6 years......I just have to accept...my body has worn out......I

    I too have gone on too long but my frustration has led me back to this site again...thanks for listening and hope you feel stronger in the days to come.
  • Sometimes the "Why" is even more confusing than the "What" & how do we treat it. I've heard a couple of people say they were fine until they had a virus or poisoning & then it all started. I don't know if it's a coincidence or more. There have been huge advances in technology but with many things the top experts are still just learning themselves.

    Terig. That's very interesting for me. My brother had a bad virus & was just starting to recover when he went on a dream vacation fishing in Gambia. He really should of cancelled the trip in hindsight but he'd been planning it for so long & was so excited about going. He was perfectly fit & healthy before the flu like virus & his trip. He had a wonderful time but was battling fatigue & strange pain. He got sicker once he returned but tests never explained why. He was diagnosed with M.E. that year.

    I was first diagnosed with osteoarthritis as a young teen but mostly it was just a word. I'd get aches & pains but nothing that slowed me down at all. In my 30's I had a little fall. Nothing that would bother anyone. I just tripped over a toy & fell to the ground. When I tried to stand my legs were completely dead! I could see the ground but it was like a mirage, it felt like I would drop through the ground. After a couple of days that became sciatica & I've been in pain 24/7 ever since. I manage my pain to the best of my ability but the idea of pain free is no longer a reality.
    My doctors have told me that it was a coincidence. The type of damage I have in my spine didn't happen in the fall. It had be building most of my life. To be honest I don't really think about the 'Why' anymore. It's just about identifying each pain generator & each symptom & trying to chip away at the pain & problems. For a couple of years I was diagnosed with fibromyalgia. Apparently I had every trigger point! Ugh! I was also labelled with a multitude of syndromes, nuropathys etc. I'm now completely convinced that all that is my reaction to unmanaged or poorly managed pain, with a sprinkle of depression making it even worse. Now I don't take any medications for that (other than Pristiq 24hr which I was prescribed for pain & fatigue) I manage my arthritis pain & those symptoms have gone away. They creep back in when my pains really bad but it hasn't been a debilitating thing for well over a year now.

    The human body is so incredibly complex. I just fight my problems going around & around this not so merry Merry-go-round. You're right. It's a roller-coaster! Cherish the highs & grab as many as you can. It's my life & it took me a long time to realize its a fantastic life. My pain completely sucks but it's just an aspect of my life. It completely consumed me in the past. I will never give it that power again! The battle with my mind has been just as hard as my war against my pain. I loose some of the battles but I will win the war! ;-)

    Happy Thanksgiving! We have a LOT to be thankful for. Let's spend the day counting our blessings ;-)
    Osteoarthritis & DDD.
  • Needing to be able to chat about condition and maybe any advice on help out there?
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