Just Cannot Take This Pain Another Day

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uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/6/2010 4:49 PM (GMT -7)   
This may take me hours to write but here I go.  I know that I haven't been here much, and I do apologize for that.  I have been having some issues with my pain for the past week and I don't know how to handle it. 
At my last PM appt. in Feb. my Dr. told me that I had Fibro.  Also I had a DEXA Scan and I have Osteopenia in my left hip and femur.  Anyway, I never in a million years thought I'd be DX'ed with Fibro...Never.
 
She said that it explains why I am always having muscle spasms, always tensed up, and always have weird pain.  This is something I DO NOT NEED right now.  She put me on Savella.  So far it makes me Super Nauseous and I can't stand that.  When I'm throwing up it makes my back and legs hurt 10 times as bad.  So I'm not taking it.  Then, just in the past week, I have been unable to stand up straight.  The last time I had this same pain was right before my first surgery because of a ruptured disc!!!  shakehead  Please,,,No Ruptured Discs....but I'm pretty sure that's what it is.
 
I walked all hunched over, and that's only for a few feet at a time... the pain in almost unbearable....a 12 out of 10, and that's putting it mildly.  lower back feels like someone has beat me with a baton.  I have to sit on the bottom of the steps and pull my leg up over my other leg just to put my shoes on....then that makes my back come into contact with the step behind me so hard that I feel like i"m going to pass out from the pain. Then the pain radiates into my right hip then pelvis then leg....all the way into my foot.  I seriously cannot handle this.  My mom is usually here but she went to the casino for the weekend...so I have no help....well, my teenage son...but he's out with his GF and friends.  So, it's just me....I don't want to go to the ER because they just don't treat me very well.(you understand).  And my next PM Appt. isn't until next Friday, the 12th.... I have taken all of my Oxy IR's...and the Methadone just doesn't cut it for this kind of pain... I should have called them yesterday but I thought I could make it. 
 
I'm sorry....I just have no one to talk to about this.  OH,,and one more thing...I have been peeing on myself.  If I have to go then I'd better get there right then...I can't physically hold it at all.... What do you think guys?
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 3/6/2010 5:51 PM (GMT -7)   
Hello Me. I am so very sorry that you are having so much pain. I am kind of concerned hearing that you are having bladder control problems along with the pain. If that is a new symptom you may want to have this checked out asap because it could be cauda equina which is considered to be an emergency because of the possibility of permanent problems. Maybe you can google it and decide from there. I hope that you are feeling better very soon. Lisa
If I can laugh at it, I can live with it.


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 3/6/2010 6:03 PM (GMT -7)   
I am so sorry to hear of your suffering. I tried savella and it made me so sick as well. I vomitted so much I landed in th er, so I am glad you stopped it.

As far as your urine situation goes, you should get checked, some nerves in your back can cause this when you have a back injury.

Have you been checked for lyme disease? I would rule that out before accepting your fibro dx. maybe you have already tested.

try to hang in there. please email me if you need someone to talk to,\

mkerinsicutech at yahoo dot com

best of luck
melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/6/2010 7:15 PM (GMT -7)   
The loss of your bladder control has me worried about you and I think maybe you should go to the ER and have your doctor paged.
I wish you were not alone through this, can you call a friend or someone, Maybe call your pm doctor first leave a message with hopes that
he or she will call you back...I wish I knew how to help you.
Prayers to you
((((((((((((((((((((((((((((((((((((((ME))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/6/2010 9:09 PM (GMT -7)   
Me,
I have to agree with those that have mentioned Cauda Equina Syndrome. It can be considered an emergency condition, and loss of bladder control along with all the pain are some red flags. I would at the very minimum try calling your doctor's office and call the on-call number and speak with whoever is on-call. I know no one likes the ER, but you may need to go if this continues.

Take care,

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/6/2010 9:32 PM (GMT -7)   
I'm in too much pain tonight to write very much, but I just want to let you know that you are in my thoughts and prayers (((((((Rhonda)))))))). I hope you are feeling a little better!

Skeye

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/7/2010 1:05 PM (GMT -7)   
Wow....this Cauda Equina Syndrome sounds like me to a tee!!!  As I said before, this is the EXACT SAME PAIN I felt when I had to have my firts Lamenectomy in 1999....but since I read about this other thing I'm wondering.... I have Spinal Stenosis...that's the reason I had Fusion Surgery several years ago...it didn't help because I have perm/. nerve damage.  My next appt. is scheduled for Friday....but I am going to call tomorrow morning.  Is this Cauda Thing serious?  Does it have a fast onset usually?  Does anyone else have any experience with it?  I'm kinda scared now..
 
I'm used to pain....I have pain every day...But THIS PAIN...OMG!!  This is so bad....Can't stay on here it hurts to sit here....but I want to thank everyone...I'll let you know what happens.
 
Me  shocked

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 3/7/2010 2:58 PM (GMT -7)   
Oh Me,

I'm so worried about you. Please make the call. Nights are always so much worse with pain.

I also have had a loss of bladder and some bowel control, but that was after my herniation and subsequent surgery. It has been a real problem and I really think you need to see someone soon. I agree, however, that the ER is almost always disasterous and that here they even tell you they can't do anything about back pain....so go home....

Please call your Dr on call and see if someone will meet you at the ER. This much pain is NOT ever normal, even for people like us!!
DDD, CPS, TLIF L5-S1 2009 (failed), FIBRO, MINEYER'S (SP?), MIGRAINES, GERD, NISSEN FUNDOPLICATION (failed), GAD, DEPRESSION, EXTREME ANXIETY DISORDER, OCD, PSTD, CHRONIC MUSCLE SPASMS, HUMAN GROWTH HORMONE DEFICIENCY, VITAMIN D DEFICIENCY and much, much more...


IsThereAnEnd?
Regular Member


Date Joined Feb 2010
Total Posts : 66
   Posted 3/7/2010 3:30 PM (GMT -7)   
Dear Me ~
I agree with everyone on the urgency of calling and/or paging your doctor ~ it just sounds like a situation that needs to be dealt with NOW - not later. I am SO worried about you. I am sorry you are in such terrible pain ~ I know it can make us all very, very miserable. Please keep us posted and I'm sending you lots and lots of hugs!!!! (((((((ME)))))))))

Huggggsss!
Cardiomyopathy, Celiac Disease, High Blood Pressure, 2 Failed Fusions @ L4, L5, S1, 2 Failed Fusions @ C7 & C8, Implantible bone growth stimulator cervically, and soon to have Neurostimulation Therapy to treat lumbar area, Chronic Pain Sufferer for 8 years, take several meds daily to survive! Praying for a miracle and fighting through the pain daily ~


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/8/2010 8:50 AM (GMT -7)   
I sure hope you called your doctor bright and early this morning to hopefully get in today...
I'm just worried about you and sure hope your doing better...Prayers and lots of soft hugz
((((((((((((((((((((((((((((((((((((((((((((((ME))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/8/2010 3:12 PM (GMT -7)   
turn Wow, thanks everyone.... I hate that you are all so worried about me, but I'm very thankful that I have someone that is.  I did call the Dr.'s office today and I'm still waiting for a reply.  It might be tomorrow before they call.  My appt. is on Friday, so if I have to wait then I have to wait. 
I am feeling a but bettet today....though still in terrible pain.  It makes me mad at myself....For the longest time I thought the pain was really bad...then this happens and I realize how much worse it can be.  Maybe I just need to BUCK UP and deal with it.....Who knows....
 
I'm just sitting here on the puter, playing Yoville and Mafia Wars and Farmville to pass the time....
 
I'll let you all know if they call...
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 3/8/2010 6:05 PM (GMT -7)   
Me,
Are you having constant problems with being able to hold your urine? If so, you can not wait to be seen. I have CES ( Cauda Equina Syndrome) and yes, it is a surgical emergency. That means that the longer the time that the nerves remain compressed, the less likely that they will recover all of their function.
Are you having any other symptoms aside from the increased pain? It also could be many other things, a bladder infection can also cause a lack of urinary control if it is bad enough.
There are tons of other things that it might be, but if you meet all of the criteria for CES, then waiting for a return phone call is like playing Russian Roulette with the rest of your life and your mobility.
CES is the cluster of symptoms, put together that makes it CES, not just a few of them here and not intermittently.
If it is CES there is a very short window of opportunity to relieve the compression of the nerves , short as in hours, not days or weeks, before the damage becomes likely permanent. Having to self cath for the rest of your life not a lot of fun, so waiting is not a good idea.
It sounds from your last post that you are feeling much better so maybe it is not CES afterall, I hope it is not for your sake. It is not a lot of fun to live with the aftereffects.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 3/8/2010 8:50 PM (GMT -7)   
I hope you are feeling better ME!!! I pray that some of your pain has lessened!!! Keep us up to date with your progress.
HUgs
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/9/2010 3:17 AM (GMT -7)   
Hi Me,
So sorry to hear you have been in hell for a while now. I hope the doc can get you fixed up ASAP! Please go in w/ a good additude and ask lots of questions. You probably already know this but I'll remind you anyway. Write down all symtoms even the little ones and every question before you see the doc!!! Sometimes when you are in that kind of pain you forget little things like that.
Good Luck and Big Hugz>
Your Buddy,
Pete

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/9/2010 9:37 PM (GMT -7)   
Hey Pete....Glad to hear from you... I did call my Dr. and she said that she would have the front Desk call me this morning to get me in early....I had to call them and with their scheduling I decided to keep my regular appt. on Friday....Less of a hassle.  I am feeling a but better....not much, but a little bit...Thanks
I am having more pain then ever...I thought it might be a ruptured disc .... My Dr. called me yesterday and the first thing she said was UTI....No!!  I know what that feels like...then she said I should go see my PCP....No, its my back not anything else.  I got the impression that the nurse didn't tell her everything...so I proceeded to fill her in.  Then she said I needed to come in early...But that didn't work out.  So, I'll be okay until Friday.
The main reason I stayed with that appt. was so I could see the Head PM Dr. and get my meds changed....  she can't do it unless he's there.  So, it is all good.
I'm using a new heating pad but it doesn't help much...just makes me sweat like a pig.  So, I lay here....suffering....and waiting.... the story of my life...sad shakehead cry
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 3/10/2010 3:07 AM (GMT -7)   
Wouldnt with a UTI you'd have the burning when you go right? The reason why I ask.....I too am having some incontinence problems that I have been dealing with over the past few months now. Nothing major, mind you like you are having Uniquely, but irritating all the same. When I do go I seem to have to strain to get it all out or its a trickle system for an hour on the potty and you all with back problems KNOW that we cannot sit on the toilet for any longer then a few moments right? Okay so there is no pain involved (unless you count the added laundry that hubby has to do or the fact that it is so irritating that it ticks me off) just mainly embaressment!!!

My mom was in her mid thirties when she had a tipped bladder and had to go in and have that repaired. But I don't think that is what it is. Coupled with my newly aquired, full blown Menopausal attacks; along with the fact that my bladder was never able to hold much, I believe it might be just because I am getting older and as everything else in my body is taken to fits of childhood tantrums.....so goes the bladder as well. At least I hope that this is all it is. But I intend on finding out when I see my MD in about a week.

I do hope you discover what is going on with your problems ME. Love you and I would hate to see anything horrible happen to you darlin.

Huggles

Scarred
I live to "Tame My Pain!" 


julesy
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 3/24/2010 7:27 AM (GMT -7)   
Hi. Msg to Me,

Don't delay I would say get to A&E, I have cauda equina syndrome I had disc herniation and epidurals 22 years ago, I put up with the sort of pain you are having only to find that all these years later my nerve damage is permanent. I have had my large colon removed due to the nerve damage caused by CES. This is an awful syndrome to live with, it can have a slow onset where you think things have eased but years later it comes back to bite you on the backside. Keep on at your medics be a nuisance it may mean you don't end up with numerous other associated problems.

Good luck Jules
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