Friday, October 31, 2014

Thursday, August 27, 2009 nurseD, Community Member, asks

Q: Does anyone have SI joint degeneration so bad you can't walk because the pain is so bad?

I fell on my left hip 11 years ago and my SI joint has gotten worse through the years.  Physical therapy and any type of exercise makes it worse.  I have a spinal cord stimulator and of course pain meds.  Without all this I can't even walk 3 feet due to pain and weakness.  Does anyone else have this problem to this degree?  Frown

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Zea, Community Member
8/28/09 3:05am

 

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Dear nurseD..( i hope i am reading your name correctly).

I have a list of disorders, degenerative disk disease, injury, syndromes... that goes on and on. In 2007 my lower back reached a critical point - two herniated disks - a displaced S1 nerve.. and sciatica (not sure if that would have been a given with the other problems. I have degenerative disk disease in my spine, a cervical spine injury that has caused severe complications and nerve damage problematic on it's own and with other sources of nerve problems it compounds. I have RSD.. nurseD - I am going to stop with my personal list right now, because it isn't going to help better explain the news I have for you .

 

It is what I will call very RARE good news, a success story thus far - with over 2 years of continued seriously blessed medical intervention that has worked, is working, and has been to date my only real miraculous treatment that has truly relieved pain, returned function to my life (in this one area) and I am grateful for every day of life.

I have been receiving epidural injections in my lower back since summer or 2007. Opiates, anti inflammatory (oral - both steroidal and non), and a host of other attempts to help me all gave me no to little relief. The ONLY help of all that was tried prior to the epidural injections was a small relief (but we know any relief is not small or unappreciated.....at the time I was prescribed Ibuprofen 800mg - and this medication had a more predictable and although to small to allow me to walk and live with any normalcy or with tolerable pain, the Ibuprofen definitely had a more noticeable and positive short lived, minimal (but present) offering of relief than any other type of medicine.  When I began treatment, I was mistreated and given facet joint injections.. this was horrible, should not have happened, and the work of a very incompetent and difficult doctor I no longer see, and would not return to if he were the last possible person I could turn to.

Not long after, I found a WONDERFUL pain management doctor, and he advised me to try the epidurals - He told me that usually it took a series of three injections, spaced two weeks apart, for any relief to take hold. For once, it was me, not someone I read about, who had a remarkable reaction to this medication. It is administered for me in an outpatient hospital setting under sedation. I will admit my nerves are shot and the method of injection is a humane way for my situation. I have also been told by support medical staff - and cannot vouch for this info.. that having the injections done while sedated makes them more effective, as the doctor can place them with a bit more time and no interference by the patients tensing, moving or dealing with an emotional reaction. I was told they are given more deeply and more precisely (they are given with a fluoroscope image of your body on a screen to assist the doctor in accurate administration). This is hearsay, but makes sense to me.

 

nurseD, after just ONE injection, the searing, crippling, relentless pain begn to ease - and was seeming to "go away". I did the other two injections on the suggested time schedule.. with a little set back after injection two - and returning to amazing success by the end of the third... These injections, as far as my doctors policy, are limited in the amount you may receive in any 12 month period.. I did find that as the six month mark came closer, the symptoms I thought magically gone forever began to return, worsening with every day. The second set of injections took a bit longer to take hold.. but eventually gave me complete relief from lower back pain, and most crucially the brutal pain that caused deep burning stabbing pain in the back of my right thigh, and constant burning pain and unbearable muscle spasms in the calf of that same leg. I have returned for follow ups each six months since - no longer going for the entire series of three if one or two has worked beyond my wildest expectations. I am however afraid to allow my doctor to use some of my  yearly allotment to relieve cervical neck pain, because when the leg and back pain is with me full force - I am not only in pain, I am unable to walk. Initially I was led to believe that surgery was going to be my only option, and then depressing me into horrible depths, it was explained that the rest of my spine, and the cervical injury that is now compressing my spinal cord - would make lower back surgery very unwise...best explanation I was given for the degenerative aspect was a humpty dumpty type of reaction to strengthening (repairing) disks that would then cause those disks either above of below to fall apart, too weak to support the newly fixed stronger areas. You mentioned weakness. Prior to the actual herniation of my disks, I did not know the source of my weakness, but I was unable to stand long enough months before the explosive pain of the ruptures breaking through - to enter a store, quickly pick and item and wait in even a small line or no line, to make the payment for the item.. By the day I grew weaker until even trying to walk a short distance had tears rolling down my face - and a new type of pain, unidentified, but draining every bit of energy I could muster -- and that was without the addition of exhaustion that and other pain added on.  Not only was walking, sitting and laying down horrible or near impossible, driving was another activity that wasn’t possible to do.

 

I am sorry for spending so much time venting my own story - or so many pieces of it, choppily presented - I do so hope that it will not detract from the message of hope I want to send out to you . The epidurals in this case, may not be miraculous for you, and if that is the case and you try them, I am sorry with absolute compassion and caring... If they wind up helping you as they did me and my advice helps, well it would make me so happy for you --but nurseD - please just know that if it isn't this particular treatment that gives you relief -- never give up believing that it is possible that something will help you.  My life is presenting me with so much pain, so many obstacles, and an emotionally devastating situation  

 

I signed on tonight hoping to find a way to begin writing on here to find courage to endure not the physical pain that has been with me, changing, evolving and appreciating for the what is now a third decade, but to keep the emotional devastation from taking away any reasons I had prior to find strength.

I have been forced to put up to try to block my emotions, my humanity, my purpose as i have known it and believed it to be - for my very existence... I read you post and wondered if maybe just maybe, the one and only absolute miracle in the plethora of battles I wage against pain ... might be possible to help you too, or in any way ease your suffering.

I don't think that ALL doctors who perform these epidurals are equal in their ability to administer them expertly, and I know from all the info I've been able to compile, that not all people react as well as I have to the treatment. I have heard that even for those who don't have the amazing success that I have had, have in their own ways been blessed to receive, some level of positive outcome

 

This has been my one area of triumph in the war I fight 24/7 with pain..... I am spiritual although not religious, but my prayers and thoughts are with you all the way, wanting for you, freedom from suffering - and if that is not what is possible for you now, for the lessening of your pain and the spirit intact to appreciate all good moment as the gifts they are.

 

I hope my lengthy way of expressing myself this evening does not detract from my intended message. Please know, that finding your question tonight, provided me, with a way to reach out and feel like I have something to offer to another person. I do not wish for any comments of sympathy about my sadness, or for this to be about me.. aside from the medical success I have had, that I will happily tell anything and everything about. .

My need to vent was desperate...but in the near future I hope to find a way to tell my story, without self pity, without desperation, but with soul and psyche out of the deep freeze, no longer having the need to force myself into a state of hibernation. Truly, for now, if I couldn’t do that, I would be unable to stop the tears and desperation. I seek to find strength and faith to guide me, in a time when my body is weak and my mind disbelieving and my heart devastated.

I hope my story of having success with the epidurals, after YEARS of procedures, medications, treatments.. for again, many things, not my lower back or related areas... but before this, nothing with a successful outcome.

 

Many times either I took it upon myself to feel was my fault, or I was prompted by the reaction of the medical community and society to feel the failure of treatment was a reflection of myself as defective, unwilling or not really wanting relief.   Nothing has ever been farther from truth.

 

God Bless All of you who are suffering, have suffered, or are feeling the pain of having a loved one you can't make the pain stop for. I appreciate being given the opportunity to share my positive experience and to purge some of the particles that have shaken loose from the stone like being I feel I must try to be in order to survive. I both pray and hope for resolution to problems that feel hopeless, but I force myself to believe are not.  

 

I will be thinking of you nurseD and hoping you find peace from pain and suffering. I mean that for everyone out there, except those who seek to relieve their own suffering by causing physical or emotional harm to others.

 

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LindaF, Community Member
11/26/11 11:23pm

Yes, I have the same situation.  I have osteoarthritis in my joints and I have had chronic sciatica since 2001. I have been to PT 4 different times, to pain management clinic, had a host of MRIs and body scans, etc. I finally learned just int the past year that my SI joints are shot which causes inflamation in the muscles and tissues around them and in turn puts pressure on the sciatic nerve on both sides, mostly on the right side but occasionally the left as well. I have taken so many nsaids that I have ulcers and can't take them anymore and of course I take pain meds to be able to walk and I seem to be getting weaker all the time.  I have just recently realized that I have to really prioritize and do the important stuff and let the rest go. I rotate getting toradol shots and steroid shots since I can't take nsaids anymore, and I get as much rest as possible. I don't know if you will see this or not as long as it has been since you posted, but if you do, I wish you the best.

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By nurseD, Community Member— Last Modified: 11/26/11, First Published: 08/27/09