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Posted By : It Never Stops - 8/8/2017 4:59 AM
It has been quite a few years since I have used this site. For a very long time I was consumed with my pain and issues in my life. I got too involved at times and made some people very frustrated and angry. For that, I apologize.

I do not wish to become embroiled in the lives of others or to give "advice" any longer...things have changed greatly in my life and in my dealings with other people. Enough about that though.

I have a real need for information and this is the most knowledgeable group I have ever known. So, I am here for help.

In 2009, I had a fusion at L5-S1, which left me with failed back surgery syndrome. I also had bulging in L4-L5 even then, but nothing was ever done to address that issue or the numerous other disc issues in the c spine and t spine. Constant pain ensued and I elected implantation of an SCS, which has been a God's Send for me. It has, however, because a real issue with added pain at the implementation site (under the middle of my bra strap) and causes a great deal of pain in its own right.

I still require quite a bit of heavy medications for pain control. But have found an excellent pain management physician (after several years of searching and pain management struggles). Though never gone, my pain was at a manageable level until yesterday.

I had a regularly scheduled pain mgt apt to go to and woke up feeling fine (for a cp person) with my "new normal" pain. At approximately 10:00 am, I was standing in a normal position talking to a friend on the phone, not bending, lifting or doing anything special at all, when I was suddenly gripped by a pain in my lower back (L4-S1 area) causing me to release a guttural sound of agony. The pain did not ease and has remained constant from that time. I could no longer walk and was sobbing with the extent of pain. I did make it to the couch, as I was literally one step away, where I sat sobbing. I was able to reach out to a family member for help and when they arrived, they retrieved my old walker and a cane I still use on occasions when walking on uneven terrain or when over tired.

Even with the help of the walker, my mobility is severely impaired and the pain does not stop.

A family member/friend drove me to my pain mgt Dr about 50 miles away (whom I had called in advance). She was very detailed in questions and told me she needed a CT asap (no MRI due to SCS). She also increased my muscle relaxer by double and gave permission to double my oxycodone script for the time being, as needed.

After the ride home, I am still in excruciating pain. Everything concentrates on the right side (however, the entire lower back is involved) and I have significant loss of strength in my rt leg. It should be noted, however, that I already had much less trouble leg strength which was measured by another physician last week).

I also had an E. coli infection (bladder) last Thursday so severe that I urinated almost complete blood at my gyn's office. Torn tissues were expelled, along with very large blood clots. There were very extreme bladder spasms, leading to the likelihood of kidney stones, as well. An infusion of very potent antibiotics (some type of myacin available only by IV infusion) was done at a hospital immediately, and appears to have resolved the E. Colin infection.

I mention all these issues because I have no idea what could be related.

The PM believes I have either "damaged" my spine with a new herniation, a damaged screw or rod, or some other internal device or that this may all be muscular in nature.

What I really need is info from anyone who may have had anything similar happen. I am petrified of another back surgery, but literally can not walk or move without extreme pain. I am in agony even picking up a glass of water unless I support my elbow on the arm of a chair. So far, only intense heat and meds help at all, but offer no real relief.

I am waiting on precert for the CT and return to PM on Monday.

Oh, it should be noted that there was no popping sound or feeling, just the intense pain which seemingly came out of the blue.

Thank you to anyone willing to read and reply. All opinions are solicited and welcome!

Posted By : straydog - 8/8/2017 8:15 AM
Hello It Never Stops & welcome back!! But my goodness, I am very sorry to read about what you are dealing with now. I very much think like your PM dr as to what you may have going on. I would suppose it is possible that you could have herniated another disc. Your back is already compromised & has issues. Even though this occurred while standing, I have to wonder if something has been brewing for awhile until this event happened. Sadly, you will not know until you get the results of the CT Scan. I would hope the drs office would make this a priority with your insurance & scheduling. I have heard about people waking up in the type of pain you are describing & like you no activity to set it off.

You mentioned the dr doubling your muscle relaxer. Is it helping at all? Do you mind me asking what one you take & how effective has it been in the past?

I wish I had some answers for you. In the meantime, please be very careful when getting up since you have the weakness in your leg. Having a fall is the last thing you need.

By the way, I looked at your prior posts here & did not see any type of offensive posting. Your posts were perfectly fine, so no apology needed. Regardless, we all have our days when we do not feel well.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 8/8/2017 8:22:27 AM (GMT-6)


Posted By : pitmom - 8/8/2017 8:57 AM
Hello. I have nothing that will help with your present pain issue but an earlier comment you made about your bra caught my attention. Have you tried a 'backless' bra? Check with bridal shops, that's where my sister got one. The shoulder straps are very long and the back strap angles downward. There is another strap that goes across the upper abdomen and is attached to the angled back straps. This at least might solve the discomfort in one area for you in the future.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : rocckyd - 8/8/2017 3:23 PM
I don't have back issues, so I can't offer any advice, but I'm sorry to read that you are in so much pain.

I'm glad your pain dr is taking you seriously, and I hope you get some relief soon. It sounds miserable.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Posted By : It Never Stops - 8/9/2017 3:04 AM
Thank you for the return welcome and the responses.

Earlier, I had enough medication in me to think I might be ok without major intervention. Now, I remember clearly the hell of fusion surgery aftermath and the feeling that my body is being ripped apart.

I cannot live like this...not in this again. It is too much pain to handle.

Just for the record, I am not suicidal. I am just in the throws of all consuming hell pain and I have taken soime meds for relied. Unfortunately, I am afraid it won't be enough because my Dr is very concerned about me taking two if everything (except the morphine) at the same time. I can take two of each (except the morphine)for a while with no issue, but I can't take it all at onssssssse time. So now I wait..pecking away with one finger..trying noft to scream out so my dh can sleep. He's so exhausted and he has to get some rest sometime.

Unfortunately, I have a Dr apt this am in another city and I certainly can't drive. My daughter has one later the same say, so she will drive and I will sit and wait for hours. I just need some relief! Now!

Any good ideas on how to stop muscle spasms ?

Posted By : It Never Stops - 8/9/2017 4:02 AM
After drifting off, it is somewhat better. Thank you Gods for my Dr and my meds. I so pray they will leave true chronic pain patients alone in this horrific war on opiates. I know it is unlikely, but if the idiots spearheading this thin had to live one day in our lives, they would get on to some other soapbox and never, ever bother us again. Just my opinionsmile.

I also wanted to say thank you for the bra idea. Unfortunately, I have tried virtually everything and have only one brand, one style of that bran that does not cause spasms of my back. I don't dare try to mess with any other kind because they are so painful and I am at least a D (sometimes a DD if I put on a few lbs).

Thank you for letting me vent about my pain without judgment. It is so difficult to live it without dwelling on it all of the time. And, as most of you are aware, people really do not want to know when you don't feel well!

I hope each of you has a reduced pain day!

Posted By : straydog - 8/9/2017 6:15 AM
I do not know if you have ever tried the muscle relaxer called Baclofen or not. I have been on it for several years & have found it works for me much better than any I have taken before. I have pretty much ran the gambit of muscle relaxers. It works in a totally different way of regular muscle relaxers. When it hit the market it was rx'd to people with MS that had severe spasticity. You do have to take it exactly as prescribed to keep a steady serum level to be effective. I suggest that you go to Drugs.com & read up on it & then look up the current muscle relaxer that you are on, you will see the difference.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : It Never Stops - 8/9/2017 6:57 AM
Thank you Susie. I have tried Baclofen and was (unfortunately) allergic to it (as I am to most other muscle relaxers). I am now taking Robaxin (doubled right now) three times a day and one Soma 350 at night.

I truly wish there was a cure all for us, but it seems even the most simple answers often have "issues".

I remember your vast knowledge and welcome any additional suggestions you may have.

In a different conversation (with my PM) we briefly discussed Embedda (?sp) since morphine is the best working long acting med I have found and embedda has fewer pills per day to keep up with. Do you have any real knowledge of this medication and whether or not it might be helpful. I am on morphine 3x day (can't remember if it is 30's or 60's), oxycodone 15 4x daily, robaxin 3x daily, soma 1 x nightly, and ultracet (up to 6 daily) from pm AND Xanax XR 3mg (controlled release) with up to 15 .5 mg extra per month (but a RARELY take the small dose ones), and 30mg adderal for narcolepsy (all same licensed psychiatrist due to PTSD,Anxiety, depression (can't take ssri's), then plaqunil, folic acid and occasional steroids from Rheumy (tried Methotrexate and another one like it w/terrible results), and fenofibrate plus Injectable Genotropin .4mg sub q daily for no HGH production (from endocrinologist). PCP provides Claritin, two different GERD meds, hbp meds, & misc antibiotics, as necessary. They are all allowed to communicate fully and provided full med and diagnostic history. I actually have a great team of physicians. Oh, the Gyn also gives BCP, Nyststin w/triamcinilone, Estrace, as well as macrobid/pyridiam to take prophylactically if intimacy with husband occurs.

That is just about the full list and it is embarrassing! Plus, I'm sure you can tell I'm on the "watch her like a hawk" list from the pharmacy/govt programs (though pharmacy is truly wonderful).

I know you are well versed on this Chronic Pain journey and perhaps you will see something that stands out as an issue.

Thanks so much for your earlier response.

Posted By : straydog - 8/9/2017 7:38 AM
I don't think we have had many here on Embeda. It is Morphine with Naltrexone, to make it tamper proof. I for one would not consider this medication, just my own thoughts. I can tell you it is very expensive too.

I have to ask you, why hasn't your PM dr ever discussed the possibility of an implanted pain pump? Looking at your current dosages, my guess is you have no room for increases. With the environment being what it is about narcotics this would get my attention real quick. You are going to require narcotics to have any quality of life. A trial can be done to see if you are a candidate. The thing with pumps you have a continuous feed of medication, no more clock watching, better pain control lower dose of a narcotic because it is in concentrated form & certainly saves the the liver. I ran out of options back in 2005 for pain meds & the pain pump was a blessing for me. Granted they are not for everyone, however, if I were in your shoes I would do some research on this. You can go to Medtronics.com & read about them. I do not advocate pain pumps, but someone in your situation it may be an option.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 8/9/2017 8:24:05 AM (GMT-6)


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