pain from base of skull to tailbone at times

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bsjaguar
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Date Joined Jun 2009
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   Posted 10/12/2009 4:40 AM (GMT -7)   
Last time I was at PM a weather front was sitting over us and I had overdone some work outside and was very sore in my cervical/shoulder area.  They ordered facet joint injections for this area in 2 weeks.  Of course by then the front had moved out and I was feeling better from the overuse too.  I canceled the injections because you can't tell if you have improvement unless they are done when you are in pain, at least that's the way I see it.
 
My pain moves around my entire back sometimes it's the lumbar then a few days later it's the thorasic area, then the cervical area.  If I take my pain meds and take it easy I can tolerate the daily pain and it's not like they can give me shots in my entire spine.  Anyway, I don't want my PM or social security, since I have filed for disability, to think that I am refusing treatment but I am so sick of being poked and proded.  Is it possible to just be on pain meds for the rest of your life or are we required to continually get shots.  I have done PT, anti-inflammatories don't help, muscle relaxers (I've tried 5 different ones) make me to tired to function, and anti-depressants affect my sex life and I don't need that with menopause already creating havoc.
I really don't want another surgery either.  My PM thinks I have facet joint issues and I agree with this.  From what I've read you can get the nerves burnt with up to a year of relief but my problems are spread over such a large area it just gets overwhelming.
 
Does anyone else here have issues with their facet joints and did you have the procedures where they went in and burnt the nerves (can't remember the proper name for this)?  Could use more info on this.
 
Thanks 
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Tirzah
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Date Joined Jul 2008
Total Posts : 2279
   Posted 10/12/2009 7:27 AM (GMT -7)   
Jag,
Have you ever tried cranio-sacral therapy? It is a special form of massage. I had the same sx & it helped me. Just a thought. ;)

As for the injections, that depends on the doc. If the shots don't help at all, then let your doc know. Of course you can always refuse any treatment, but the doctor can also refuse to treat you. The important thing is that you stay open-minded to options other than medication. There are so many dangers -- both short-term and long-term -- resulting from pain meds [plus there are the issues of dependence, abuse & addiction]. From what I've seen, the good doctors are willing to let you rule out one non-drug therapy but if you won't consider anything other than narcs, that's where the problems come in.

feel better,
Frances

bsjaguar
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Date Joined Jun 2009
Total Posts : 974
   Posted 10/12/2009 8:10 AM (GMT -7)   
I know where you are coming from Frances but I've been dealing with this for 7 yrs. I've had epidural injections, trigger point injections, shots in my hips, my neck and now they want to go down my spine.

I've only been on narcotic pain meds on a daily for 5 months before that it was only after surgical procedures. I only use the meds as prescribed and the oxycodone for break through when I really need them, I always have meds left over and take those to my appts.

After 2 fusion surgeries and 2 knee surgeries plus all the doctor appts, PT, injections, MRI's, CT scans and various prescriptions that did nothing or made me sick I think I need a break.

Guess it is my turn to whine on the forum. Hope everyone has a good day, it's rainy and gloomy here so I think it is making me a little moody too.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 10/12/2009 8:24 AM (GMT -7)   
 
   Dear Jag,
 
      Good morning *warm huggs* I hope the weather where you are is more tolerable today. It is down right chilly here!! And the heating / air conditioning fellow called to say he had some family problems, wouldnt be able to come til tuesday. Good thing I have a plethra of fuzzy socks :-)
 
     My facets are having issues to say the least ... The doctors call it "levoscoliosis". A "structural problem" they say. It keeps getting worse and worse and going at an extremely rapid rate. So, I have alot of my spine injected every three to four months ( I try to wait as long as possible because with more injections = more cost. last time was 5,000). The only problem with having so much done is that they treat me like a fragile egg and are always worried of "risk of infection".   So, I am closly monitored / check-up for first month and a half after each "series of injections".  After the injections, when I have a "flare" all I feel is stiffness, a "pushing out" sensation and muscles "sticking". 
 
      For the joint flares (through out my body) I take a medicine called Nabumetone (sometimes folks call it "relofen") it keeps me functioning, but it is in the "NSAID" family tree. So, no so sure that would be of help to you.
 
      I had a friend that took an antidepressant and it effected her "bed life" too, but she told her doctor about it and he switched her to something new. That one was better, but not quite enough, but!! On the thrid try, they got one that worked and it was perfect for her & her husband to *wink*.
 
     I know nothing of "RF Burns" or "Nerve abalation". I mean, I know of the procedure, but not first hand knowladge. As I am "not a candidate" for it. But oh my gosh I wish I were! I met so many folks in the waiting rooms that say it is fantastic and one man had relief for 8 months!! I met one lady who had been in a accident had "trauma" in her shoulder, she was 9months out from her RF burns and still no pain. Gosh, I wish I could get it done!
 
     So, that is really all I know about those types of pain relief. Not so much really. I am sorry I cannot be of more help to you. But, it was very nice to catch up with you. I hope you have a nice day today.
 
*huggs*
   dani
 
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 10/12/2009 6:02 PM (GMT -7)   
Jag,
Whine away. I'm certainly not trying to convert you to anything. Just stating the facts that from what I've experienced, what I've read from professional journal in the field of pain medicine & anesthesiology and what I've heard from others that often docs are not willing to just keep prescribing narc pain meds month after month to patients who are unwilling to try anything else.

God knows I've been through enough misery of mine own not to judge anyone else. I actually took Advil before a test that measured blood inflammation levels because I was sick and tired of having to go for blood tests every 2 weeks. It was not a healthy choice because I needed treatment, but I just couldn't take any more blood draws. I had had 2 veins collapse & only had one sorta-good one left. So I do feel for you. I sure hope your PM is cool with giving you a break for a while.

Know that we will always be supportive of you no matter what. :)

Frances

straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 10/12/2009 6:46 PM (GMT -7)   

Hey Jag, whine away, good grief as much as you have been whittled on honey-no wonder you have left over pain from Haitis. My knees have been whittled on alot too, well one of them 4 surgeries on the left and one on the right. Your body is your best weather forecaster as you know. I like you try to remain as active as possible, we have to or we are cooked louie's.

I had R/F done on both neck and my low back. Facets problems at L5-S1. Prior to having this done my pm dr did diagnostic blocks in his office to see if I would be a candidate for the R/F. I must have passed I had them done. I did great on the cervical and about medium on the lumbar. Pain was back in 6 months on the back but that is not unusual per my dr. He gave odds of relief for 6 to 12 months. Just putting a bandaide on things. Keep in mind your ins has to approve this stuff too. I was glad I had it done.

I think Frances answered your questions about the meds. I hope you get to feeling better, but lets face it, winter and cool weather is not our friends. Hugs coming your way.

 


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 10/12/2009 9:51 PM (GMT -7)   
Jag,
I don't think you're whining at all! You certainly have tried many treatments and surgeries, so I would think that a good PM who does medication management (not all do, as you probably know by now) should understand if you say "enough" in regard to the injections and procedures, especially if you're not getting significant relief.

So I would talk with your doctor and just tell him/her you're tired of it all and at the very least need a break. I've also got facet joint deterioration, as well as a lot of other stuff from the cervical spine on down. My neck seems to be slowly worsening, which I hoped wouldn't happen. The lumbar fusion surgery didn't help. So I'm just managing with medication and really don't have any thought of getting another treatment unless something was found that could give me significant relief. Besides, I have no insurance right now, so nothing to pay for these procedures!

I would have liked to have had an RF procedure on the nerves in my spine, but a specific location couldn't be isolated with the nerve blocks, so an RF was out. Interestingly enough, I've recently learned I have a precancerous condition in my esophagus, and they are beginning to use RF ablation to get rid of the precancerous cells. At least I know something about the procedure!

Didn't mean to get off track with my stuff. I just think wanting to manage with medication after all you've been through is very understandable.

PaLady

bsjaguar
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Date Joined Jun 2009
Total Posts : 974
   Posted 10/13/2009 3:40 AM (GMT -7)   
Thanks everyone for the support. I am seeing the doctor this time, not the physician assistant that I normally see. I just want him to understand that my problems move around so much that I worried that by the time they schedule an injection that the pain has moved somewhere else depending on what I do and the weather. I had an injection about 3 months ago at a bulding disc at L-2/3 but it lasted only 2 months but did help so it is probably a candidate for RF.

I do have insurance but with the co-pays I can't really afford to be having two procedures a month plus my normal office visit. Money is tight with me not working. I have a big hospital bill from two MRI's, a CT scan to check my kidneys(they saw an enlarged kidney on my MRI so had to get that checked out) then off to the urologist, of course then you have the radiologist that reads them so the co-pays are killing us financially. Even with insurance it is hard.

Hope you can get some relief soon PaLady with the med assistance & getting some kind of medical help.

Dani your situation has to be overwhelming and I commend you for your perseverence. You are one tough cookie.

Frances, I'm trying to get myself to the point where I can just see a regular doctor closer to my home. Winter is just around the corner and here in Ohio and I worry about driving 2 hrs. in the snow every month to see the PM. I can't get one closer that is in-network. Plus the co-pay is higher for a specialist.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 10/13/2009 7:38 AM (GMT -7)   
Jag,
Are you able with your insurance to do 90-day mail order pharmacy? I know that saved me a lot of money -- only 4 doctor's visits a year & for me it was about 33% savings on my medication. I don't know whether that's practical or even possible for you, but maybe something worth looking into. I was a Walgreen's the other day & saw that now even they will do 90-day prescriptions (I think they are mail order, but I didn't look into it since my insurance requires I use Medco by Mail).

Anyways, I will be hoping & praying that you will find a way to not have to be paying so much money or be on the road in the snowy winters -- to which I can well relate since my PM is 90 minutes away & with the snowy IL winters sometimes that time can double or triple. ;)

blessings,
Frances

bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 10/13/2009 11:04 AM (GMT -7)   
My PM won't write narcotic pain med scripts for more than 30 days. I do use our medco mail-in for my neurontin for only $10 for 90 days. This is also another reason I'd like to change to another doctor because I don't really feel as though I need to see a doctor every 30. If the weather gets to bad and I can't get to Ft. Wayne, IN I will have to go without until the weather clears, sure don't want withdrawls during a snow storm. I know all about your weather cause it always heads our way.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/13/2009 2:20 PM (GMT -7)   
Jag,
I don't know if this would work for you, but it's something I'm just trying. Since I'm paying out of pocket for the meds I can't get via the pharmaceuticals, WalMart is the cheapest for my percocet, but they will not fill a 90 day Rx for C2 meds. What they suggested, though, was to see if my doctor would write me 3 separate scripts, and on the bottom of each put "do not fill until (date)". I left a message with my angel of a neurosurgeon who is still writing me percocet scripts 2 years after my surgery (they know I have no insurance right now, and there's no way to find a new doctor without it!) to see if they want to do this. I left it up to them. Otherwise I just call every 30 days and leave a message and she (the angel nurse) mails me up a script, since they are over 2 hours away. So I wonder if your doctor would be willing to do this for you, especially over the winter months.

I won't know until I get my next script in the mail whether my doctor's nurse gave me one or 3 scripts.

PaLady

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 10/13/2009 6:30 PM (GMT -7)   
Jag,
I don't know where in IN you live, but if you want I used to go to a pain clinic out in Merrillville (sp?) back before there were so many good clinics in my area.
I don't know whether in IN you can get post-dated scripts. I was told that is against the law there. I know it's not legal in IL (though that's not to say there aren't still some doctors who will do it). I know it was so much nicer for me to only have to go to my PM's every three months when money was an issue (which it was until I hit my max out of pocket). He never used to do that, but now he will for any of his established patients. Now things are a little different with the new mandatory UA, but he has been pretty good with some people at working out a means for them to give the sample closer to home each month so he can monitor medication levels without making them hike all the way out to his office. I sure hope you can find somebody like that in your area. My relatives in MI have already had snow, so I know it's heading our way soon. :(

peace,
Frances

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 10/13/2009 8:47 PM (GMT -7)   
Wow, you guys are lucky. In Tx and Okla. its against the law for a dr to mail a script of any kind to a patient. If a dr gets caught he loses his license.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


deb in indiana
Regular Member


Date Joined Aug 2005
Total Posts : 387
   Posted 10/13/2009 8:58 PM (GMT -7)   
JAG you must have the same doctor as i do no matter what it's  you see the doctor every 30 days or no meds iam 20 miles from Ft.Wayne Deb

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/13/2009 10:37 PM (GMT -7)   
Susie,
I'm going to have to ask my cousin about that (the mailing Rx issue). I know my neurosurgeon's nurse has been a real angel to me in keeping things going this long, and I also know one day it wiil end, but they know I have no insurance right now. Truthfully, this is how a doctor should be in not abandoning a patient. Because I would be up the creek without a paddle if he did.

But I'd never heard it was illegal to mail a script. You've got me curious.

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 10/13/2009 11:04 PM (GMT -7)   
Jag
do you live in Ohio or indiana? or is Ft. Wayne just the nearest city with a PM closest to you? Anway I was just curious, as I was born in Ft. Wayne In. allot of my relatives still live there, or close in near by towns! I moved away from there when I was only 7, but go back every now and then to visit the relatives. Last time was a year ago!
Deb I see your also a Hoosier! Anyway Frances is right, here in Illinois you can only get the narcotic pain meds for 30 days, I know it is 40 miles for me one way to my pain clinic, 7 mile on a country road, and then 30 some on the interstate! I am so used to going there that I don't think anything about driving it even just ot go out to dinner!
Frances doesn't it seem like we just went from warm to really cold without and cool down weather in between? I hope this isn't a sign of what winter is going to be like!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/13/2009 11:20 PM (GMT -7)   
White Beard - weather is kind of like that here in PA, too. Most of us are saying we never really got a decent summer, and now we're skipping over fall!

Sorry - don't want to sidetrack the thread!

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 10/13/2009 11:45 PM (GMT -7)   
PALady

I know exactly what you mean! Just a a quick side note, are the fall leaves really pretty in your area this year? So far ours have seemed to fizzeled out this year and are not anythiing like we have had in previous years! I know I have been to Pittsburg a few times to visit an old Air Force buddy and it is beautiful in the fall around there!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/14/2009 1:07 AM (GMT -7)   
White Beard,
The leaves really haven't had a full chance to turn yet up here along the lakeshore, and some heavy winds have already blown some off the trees! No fair!!! I'm still hoping for a late taste of at least sunny fall days. There are freeze warnings posted some nights for areas in the region, which is really making the farmers nervous because the grapes aren't all harvested yet!

And I'm already using my heat way too much! (which = $$$)

PaLady

bsjaguar
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Date Joined Jun 2009
Total Posts : 974
   Posted 10/14/2009 1:43 AM (GMT -7)   
I'm in OH, doc is in IN. Not sure of the laws but doc won't write scripts for more than 30 days and will not mail them, you have to go there and pay for a visit.

I agree about the weather, it made a very drastic change all of a sudden. Where's our Indian Summer?
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/14/2009 12:29 PM (GMT -7)   
Jag,
While I fully understand reasons for the laws and such, and doctors wanting to see people regularly, there's really something wrong when I doctor is either consrained from or unwiling (if he/she is allowed by law) to make reasonable exceptions with patients that have a good history - especially when one considers weather conditions like WINTER! My car is 12 years old, and for the first year in a long time I won't have snow tires (can't afford them) cuz the old ones wore out, although I do have 2 new tires on the front wheels, and I don't do much driving. But if I had to drive a few hours back and forth to a doctor between Nov. - March on a monthly basis, well....you know the deal. Sometimes you can hit a patch of nearly springlike weather, but then you can hit a month's worth of near blizzard conditions! I wish you could find someone closer, but I know the feeling.

And I'm hoping for Indian Summer, too!!! This has been a ridiculously cold year, except for August, and I was just getting used to summer - the one month of it we had - and it's gone!

PaLady
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