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jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 5/9/2011 3:38 PM (GMT -6)   
Hi-
 
I'm knew to the forum and just thought I'd introduce myself.
 
I've been dealing with pretty severe pain for a little over a year now. I went for nine months without any pain medication and it was awful. Finally around month 10, my PCP (probably not knowing what else to do with me) prescribed me oxycodone..what a relief. I take 10 mgs, 3X a day along with .5 mgs of Klonopin for it's anxiety and muscle relaxant properties and I tend to go into muscle spasms pretty easily. I'm also on Wellbutrin.
 
Just a little background, I have cervical spine spondylosis but the MRI shows it as "mild". I have two bulging disks, C5-C6 and C6-C7. MRI's also show this as "mild". I had an MRI of my shoulder which came back normal. My worst pain is in my left shoulder, kind of where the shoulder blade is. That pain is constant, gnawing, aching and it never leaves. I also have pain on that side of my neck along with some pretty severe muscle spasms also on my neck. The pain goes into the back of my head. Also at times is travels down my left arm (on the outside of my arm) and causes numbness in my pinky and ring finger. Just recently, whithin the last couple of months or so, I've started to have pain on my right side as well, which is really scary.
 
To make this as short as possible, I've tried almost everything to find some help. I've been to two Pain Centers (one was also a spine center), a physical medicine doctor, 2 orthopedic surgeons, a neurologist, a shrink, my PCP numerous times, acupuncture, massage therapy, 6 weeks of PT, three months of weekly chiropractor visits. I recently saw a physiatrist. Also, three visits to the ER, two visits to urgent care. Fun, Fun, Fun.
 
I've had an MRI of the C-spine twice, an MRI of my neck once. EMG and nerve conduction studies, three sets of trigger point injections on different areas of my shoulder area. Over the weekend I had a nuclear medicine study with Spect. I guess this can help spot microfractures in my spine that maybe the MRI missed. I'm hoping to be a candidate for facet joint injections or something close to that.
 
I've been on just about every medication out there including gaba, several antidepressants, tramadol, ativan, xanax, klonopin, oral steroids, ambien for sleep..and most recently, like I stated above, the oxycodone, klonopin, Wellbutrin combo.
 
Sorry this was so long, just wanted to get that off my chest (or off my shoulder/neck turn )
 
Anyhow, I'm beyond frustrated. I get very depressed. I get so anxious I have panic attacks. I feel trapped.  The only person who has even listened to my concerns and shown me some compassion is my PCP.  I'm also having massive guilt about being on these meds. It makes me feel weak and dependent and scared. I have yet to have the discussion with my PCP about how long she will prescribe and how she will taper me off so I don't go through withdrawals. She seems to be quick to write the script but not very clear as to what her future plans are for me.
 
Most of the time I get lumped in the chronic pain category. I've also been told it's myofascial pain syndrome.
 
I'm trudging forward to try everything. I'm seeing a osteopathic doctor right now for 13 treatments. He gives massages from my feet to the top of my head. They can be very painful. He seems to know a lot about trigger points, etc. I'll be seeing him for my fifth visit tonight. So far, it hasn't changed my pain much. Actually, it has caused increasing pain on my right shoulder. Maybe it's my body trying to balance itself back out again, I don't know.
 
After this I plan to try PT with a more upscale place I recently found. I might try facet injections if I'm a candidate for that. After that, I'll probably try seeing a rheumatologist..since what I have is a type of arthritis.
 
Anyhow, I'm glad to see this forum out here. I've been scared and very isolated and I don't know anyone with chronic pain who I can talk to about it. No one wants to hear it and I'm sick of talking about it so I lie a lot and tell people I'm just fine. I had no idea how something like this could take over almost every aspect of ones life. I've learned that the hard way.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 5/9/2011 4:14 PM (GMT -6)   
Hello Jessup173, sorry you are feeling so isolated, but you have come to the right place.  I have been a Chronic Pain Patient for over 11 years now, this forum is the best thing that happened to me in a long time.
 
You will never feel alone here, and someone has either been where you are, or are going through it right now.  No matter what the situation this is the place to be.  Since I have had 11 years of it already, I am fortunatley mostly past the depression part although believe me it still sneaks up on me from time to time.  There is no getting around it, once you are a part of CP family your life is changing and will continue to change.
 
It was so hard for me to realize that I would not be getting up, getting my girls ready for school, coaching my youngest girls softball team.  Yes that part of my life was gone, but once I decided not to just lay down and take it, I found there were other things I could do, things that made me feel useful, and good about myself again.
 
This is not an easy trip, but you just have to keep getting up everyday, and going at it (whatever it is). You will find that although you might not have the life you had before you became a cp patient, you still have a wonderful life, with many new things to discover.
 
Sorry I am not trying to sound like "Pollyanna", it will not be easy, but it can be done, it does happen.
 
Good luck to you, find yourself a Pain Management Doctor, your PCP should be able to show you the way, and once you find a PM doctor, they will be able to tell you much more about medicines, how much, how long. ect.  Again Good Luck, Hoping you will keep reaching out to this forum, you will find so many wonderful people who know just what you are going thru. 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 5/9/2011 4:43 PM (GMT -6)   
Thanks for the warm welcome. I'm sorry to hear you've had to deal with chronic pain for so long. But I'm happy to hear that you've been able to make a life for yourself.

I know, there is point where you feel sorry for yourself..but you can't feel that way forever. I'm getting to the mad point. Which I think in ways is what keeps me going. Sounds strange I guess...but I'm more willing to stand up for myself with these doctors and do what is best for me. I know my body and I know what is causing me more pain and what isn't.

And I know I deserve doctors that care and listen to me and treat me with respect.

I do try to find happiness every day. I have a two year old at home and she is a joy. A little ray of sunshine every day. That is why I've tried to hard to figure out if this is curable. Just like you were saying, I want to be there for her. I want to be a good mommy.

Thank you for the good advice. I appreciate it.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/9/2011 9:02 PM (GMT -6)   
If the ostepathic doctor visits hurt maybe it's not doing you any good, and time to
back off that approach, does ice packs help? maybe try ice or heat packs and if you
do get PT ask about the ultra sound treatments, as those can help...
Never be afraid of taking medicine, as long as your following your doctors advise on it's
usage, medicine can be a tool in helping you deal with your chronic pain...
This is a good place with lots of nice people and I hope you'll visit our Thursday night chat sometime...
well wishes and healing hugz
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9250
   Posted 5/10/2011 12:49 AM (GMT -6)   
Hi Jessup~

And welcome to the CP family. I'm truly sorry you have to be here but since you and the rest of us are stuck living with chronic pain, this is the best place to support each other and meet some great people in the process.

We have many folks who have seen a pain psychologist and it's changed their lives for the better. If you just can't ask your PCP about her plans for your pain meds...and I do understand... you more likely would be able to ask a psychologist.

I found a website that has a good write-up on these types of doctors. Maybe it can give you some insights into whether this is for you or not.

Good luck,
Chutz

www.4therapy.com/life-topics/chronic-pain/i-have-chronic-pain-why-do-i-need-pain-psychologist-2611
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
~~~~~
Use the talents you possess, for the woods would be very silent if no birds sang except the best.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/10/2011 2:12 AM (GMT -6)   
Hi Jessup and welcome :)

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16789
   Posted 5/10/2011 10:09 AM (GMT -6)   
Hi Jessup, I too would like to welcome you to Healing Well's chronic pain forum. I have herniations at C5-6 and C6-7 and know the pain you are speaking of and how it can wear you out. I tried everything known to man it seemed like and could not get any relief. At best I would get a couple of hours of relief and then was back to square one. It was not until my 2nd PM dr did radio frequency burning of the nerve endings that I found total relief. These were done under fluouroscopy. Prior to having the actual procedure done he did a diagnostic block to see if I was a candidate for the RF and thankfully I was. For the first time in years I was pain free. The dr told me the nerve endings would grow back and the pain would return and at best I may get 12 months of relief from the procedure. Mine lasted a lot longer than that. I would only have some minor flare ups like if I sat too long on the computer or sat in a wrong position. Just recently I re-injured my neck from lifting so I am pretty much back to square one again and I do not like it. I am waiting now to scheduled for a CT Scan. I can't say the Rf would help you, but it may something for you to check into since you have tried everything else.

Anyway, I wanted to pop on and tell you welcome aboard and let you know about the radio frequency burning of nerve endings. Take care and keep us posted on how you are doing.
Moderator Chronic Pain Forum

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/11/2011 11:16 AM (GMT -6)   
 
    Hello Jessup!
 
         I don't know how you slipped by my welcome, but here it is!
 
                "Welcome!" wink ....we are so glad that you found this wonderful forum for support!
 
       Please do continue to share with the members here as often as you can. We do care, and will support you!
 
           It looks like you have recieved several good replies, so I really won't add to what has been well written already, but  I will continue to look for more of you're post in the future.
 
         Take care,
 
           SE wink
Moderator Chronic Pain Forum

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jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 5/11/2011 11:58 AM (GMT -6)   
Thank you for the welcomes. They caused me to tear up a bit. I've just felt so isolated and alone in dealing with this. My husband tries to help, but never having had to go through something like this himself, he has a hard time.

I do have a question that hopefully one of you can answer. Actually a couple of questions.

I recently had a bone scan with SPECT of my c-spine and it came back completely normal. The ordering physician was a physiatrist. She told me that she might be able to do facet joint injections on me and these tests would tell her where the injection would be done. But when they found nothing on the bone scan they told me there is nothing else they do to help me. I'm curious about this because I actually used to work for a Pain Center and they did facet joint blocks w/o taking bone scans. It was used as a diagnostic tool. They asked where your pain was and based on the pain pattern they could tell about what level the injection might help. If this injection works..then denervation (or nerve burning) was a more permanent solution. I'm wondering why I am not even being given that option. And should I find someone else that would be willing to try some injections just to see if I am a candidate?

The other question is about Pain Centers. I've been to two. The first one was the one I worked for (I did their billing). The doctor there spent about 10 minutes with me, told me it was all due to being out of shape and my posture. I asked him about medicines to help me with the pain and he told me to "suck it up" and go to PT and then gave me exercises to try at home. Within a couple of days of doing these exercises I was in so much pain that I sat in the corner of my living room and cried. I cannot beleive a Pain Center would tell me to suck it up. Needless to say, I did not go back.

I went to a second Pain Center. They were a little better there but told me it was just stress and gave me a couple of trigger point injections that did not help at all. They also gave me some numbing ointment (which right on the bottle says its for skin issues like bug bites, etc.) This of course, does nothing to help with deep muscle or bone pain. I was also told to find my "happy place" and that would help with the pain. I always feel rushed through my appt and most of the time I'm only seen by the assistant. On top of this it always takes about a month to get in. They have only once talked to me about prescribing pain meds for me. But they told me they would do that only if my PCP no longer wanted to prescribe for me. I just feel like they are really dragging their feet on helping me with the pain. I need help now. Not after I lose my job because I can't sit in a seat on the computer all day. Not after I've missed the fun times with my daughter because I couldn't get up off the couch.

Would it be worth it for me to try to find another Pain Center? I've done some research and found another couple in the area. I just feel like the two I've visited have really not listened to my concerns and didn't give a crap about the pain. I don't think it's humane to let someone go on and on like that. I think it's horrible. I wish just one day these Pain Docs knew how this feels.

Anyhow, I have another dreaded appt with my PCP today to see if she will continue to prescribe. Every time I have to go through this I'm terrified. What if she just tells me to suck it up? And heaven forbid she retires. And like I said, she doesn't seem to have a plan for me or for the meds she is prescribing. Wouldn't it be to my benefit to find a Pain Center that makes me feel listened to and prescribes me the meds I need??

I just feel so helpless/hopeless. I try to keep pushing forward but I'm starting to run out of options. I'll let the osteopath finish his 13 sessions and then maybe try PT again at a different place. There are always rheumatologists also. This would be one type of specialist I've never seen..but since I have a type of spinal arthritis maybe they would be able to help. I don't know. I feel like if I stop trying, I'm giving up and I don't like to feel that way.

Thanks,
Jessupl

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16789
   Posted 5/11/2011 3:02 PM (GMT -6)   
Jessup there are two types of PM drs out there now, one does injections & procedures only, no meds, the other of course does the same but will rx meds if he/she feels its warranted. I would do my best to find myself another PM dr and make sure who it is does rx meds and see about having a RF burning of the nerve endings done. This helped me so much with my neck and shoulder. I felt like I had a baseball under my right shoulder blade for years and nothing made it go away except the RF. They do a diagnostic block before the RF and if it relieves the pain then you are a candidate for the RF. I posted this to you above but you must have missed it. Sometimes we have to advocate for our own care and thats ok to just that. Drs are hired to work for you when you go see them and if they don't try to help you or listen to you, then they are not doing their job and they are into it for money the way I see it. Pain mgt is a very lucrative business and there are some out there for the almighty dollar only. Its like anything else we get the good with the bad.

It is a hard life living with CP and you will find that people that suffer with it are some the strongest people you will ever meet. It is not for the weak ones thats for sure. I have suffered with it over 20 yrs, long before it was ever given a name, back then you were a malinger, lazy, pill popper and yes, sometimes we are still viewed that way. If a dr ever tells you to suck it up, you need to walk out of there just as quick as your feet will take you and never look back, let alone go back. Sometimes we have to kiss a few toads before we find our prince, same way with finding a good dr. Just don't give up. Yes, you are deserving of quality life and should be able to enjoy being with your little one and having a life at the same time. We do have to go about it differently than most but it can be done.

Check with your health insurance online and see who is on the plan for CP and start making calls to find out what the dr does for his patients. You will need a referral I am sure and your PCP can handle this for you. Take care.
Moderator Chronic Pain Forum

jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 5/13/2011 9:55 AM (GMT -6)   
Thank you so much for the information, straydog. And yes, I must have missed the comment you made earlier about the denervation. It's really great to hear the denervation worked for you and helped with the symptoms.

Do you want to know what I find most fascinating? Out of all the specialists I've seen, the only one that spends time with me and has actually had me stand in front of her to feel around for these "spots" where my muscles/tendons, etc feel like rocks, is my PCP. I went to see her yesterday. She had me stand in front of her and she felt my neck and upper shoulder on both sides and was like "WOW". She gets it. She's the only one. She's a little kookie sometimes but she gets that I'm in pain and just by taking a few extra minutes to examine me knows WHY I'm in pain. Now, the muscle/tendon problems are probably due to an underlying condition that I haven't found yet..but at least she aknowledges this.

I did talk to her about if any of my treatments worked and weaing off my pain medicines if this happened. I asked her if she would be there to help me with a taper when I request it and she told me yes. She told me we would do a slow taper and there was another drug (I beleive she said a drug for high blood pressure) that she would give me in addition to my taper to help mask withdrawal symptoms. She said no one should have to go through that cold turkey. She also said something funny like "You know why they call it cold turkey?? Because you are in a cold sweat, your skin turns pail, and you have goosebumps all over the place..in truth you look like a cold, uncooked turkey". At least that made me laugh.

I have a couple of Pain Centers in the area that I printed out information on that I can try calling. I'll probably wait until I'm done with the osteopathic massage visits to start making the calls. It's scary though, because, like you said, calling around and talking to people and asking them if they do medication management for those of us with moderate to severe pain, for seemingly no reason....well it just scares me. I don't want them to think I'm doctor shopping or trying to score drugs for recreational use. I feel like people think that about me every time I ask. It was even hard seeing my PCP yesterday. But with her I don't even have to ask. We just talk about what I've been doing and she writes me two months worth of refills.

She also (bless her heart) showed me a couple of yoga moves to stretch out the neck muscles, one which involved her lying on the floor of the exam room with her legs up on the counter. Just to demonstrate this move. Now I ask you- what doctor would do that? No one. That's why she's been my PCP for the last 20 years. Also, she talked to me and gave me the name of a lady who is a physical therapist and also a liscensed yoga instructor. I had no idea such people even existed. I may also give this a try along with finding a new pain center.

straydog said...
Sometimes we have to advocate for our own care and thats ok to just that. Drs are hired to work for you when you go see them and if they don't try to help you or listen to you, then they are not doing their job and they are into it for money the way I see it.


Thank you for that comment. It's one of the hardest things we as patient's must learn and something I personally have struggled with.

straydog said...
If a dr ever tells you to suck it up, you need to walk out of there just as quick as your feet will take you and never look back, let alone go back.



Thanks making me tear up with this comment on a Friday morning. I mean that in a good way. It's so nice to talk to someone who "get's it" and it's exactly what I need to hear. I don't know you, but I'm so grateful to have gotten to talk to you even if it's just through a forum.

Jessupl73

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16789
   Posted 5/15/2011 3:52 AM (GMT -6)   
Jessup it sounds like your PCP is a gem and a real keeper for sure. I know its disgusting the way so many drs will treat a patient. Your dr is correct about the BP medication used to help with a taper.

When calling these potential new PM drs, just say you know there are 2 types, one that will rx meds if warranted and the other that does not. That does not make you sound bad at all.

I was lucky the RF helped my neck but it did not help my low back at all. At least it got rid of pain that had been there for years and was worth it working on at least one area. Withdrawal symptoms are not fun and they will make you feel awful. Between the pain being off the scale and then the other side effects kicking in, its not pretty.

I do hope that the osteo massage gives you some relief, let us know. Take care.
Moderator Chronic Pain Forum
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