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Posted 9/26/2014 8:25 PM (GMT 0)
Joan, hope you are finding relief by now. Cortisone never helped me. I tried several times.

Retired Mom: Gabapentin up to 2400mg / day orally did nothing for me. Does the cream have a name?

I went to see my NP yesterday. She took actual TIME to listen to me! I got blood work, and the pancreas is fine, liver is slightly "up" but not worrisome, she said. Said the other levels all seemed fine. She ordered a CAT scan with contrast dye, and I'm scheduled for next week. The scan will be full torso, so if there's anything lurking hopefully they will find an answer.

At first she asked if I wanted to know what was wrong or if I wanted out of pain. I told her I've tried 4 years to just treat the pain, and since no one has been able to, they must not be looking in the right place. Now we need to find the problem, then treat the pain! She understood it is more about a solution for me, and I am not "pill-happy". But funny, she actually gave me all the pain pills and muscle relaxers I was almost out of, and without question!

Now I'm all worried about the contrast dye! I have read such horror stories!
Posted 9/26/2014 9:41 PM (GMT 0)
Hey Lori...I wondered what happened to you during/after your anticipated vacation.  Now, I'm REALLY curious...NP as in Nurse Practitioner?  She's willing to order CT with dye?  Don't worry about the contrast dye, as it's always a risk vs. benefit when seeking diagnosis of pain.

I like that she asked if your wanted to know the cause of pain or treat the pain?  I AGREE TOTALLY with you in that I, too, want to know the CAUSE of my pain.  NO specialist will touch me with the proverbial 20 ft. pole.  They look at my history with stage 4 endometriosis, write my excruciating pain off as adhesions "related" to endometriosis.  I LOVE IT when folks dismiss me (not).  I'm left being told there's "nothing more" for me EXCEPT pain management.  What?  Why?  How do you know my intestines, kidneys and bladder aren't being CHOKED to death?  Whether it's lesions or adhesions...It can be deadly for ME not them.  I digress.

Please let me know what your NP "thinks" this test will reveal/rule out. I'm very curious, as I don't think I've ever had the CT w/contrast dye.  I've had many CTs. I've had contrast dye with kidney function tests, stomach, and most recently last Fall a full body bone scan. Will you please post how your test goes for you AND your results?

Thanks~~Dixie

Posted 9/27/2014 2:09 PM (GMT 0)
Dixie- yes it was my Nurse Practitioner. I saw her 4 years ago after my pain started; she is the one who ordered the original MRI's. I appreciate the fact that she took time with me. And so often the docs are totally unwilling to even give pain meds or relaxers, so I'm pleased she filled everything without looking at me cross-wise.

I forgot to mention that she is suspecting Fibromyalgia, and wants me to try Lyrica to see if it helps. Went to pick up the prescription last night, and my out of pocket is $465!! I left without it, but my super great husband is picking it up for me today. He said "ANY price if we can get you some relief!"

I had thought fibromyalgia for a while, but my last doctor dismissed it. I am so focused on the single pain in my mid back that I guess I tend to ignore all the other pains that come and go. (Did that make sense?) Anyway, if you take all those pains together, then maybe the fibro is a consideration. I'm willing to try anything at this point.

The Ct scan could cost us over $2000 out of pocket, and I am tempted to cancel, but my husband wants me to go forward with it. He hears me cry out in pain during the night, and he feels so helpless. I am so blessed to have his unending support.

Dixie- I sure hope you can find some relief. I can imagine your frustration with all your docs. And I am not in the excruciating level of pain you are in, so I know your...whatever it is...is much worse than me. I pray for your healing as well.

I draw strength from the Lord and the verse in 2 Corinthians, "My Grace is sufficient for you, for My Power is made perfect in weakness." The Lord chose not to heal Paul of his affliction, and I need to be content in His Grace.

I will keep you posted about the results from the CT scan. I don't know what she is hoping to find. And she said I should know within a week if Lyrica will be able to help my pain, at least to a more tolerable level.
Posted 9/27/2014 4:01 PM (GMT 0)
LoriD,
As Dixie said, not to worry about the contrast dye, it just feels a little warm when they inject it and it gets the warmest around your throat/neck area. You might even get a momentary "taste" of what I register as burnt rubber but it's over in seconds. A bit of discomfort is all it amounts to. I gone through 6 of them now with out a problem.

That is great news about the NP filling your scripts, I always get along with the NPs at my cancer center, I have to call them every month for my class II refills and the script is always there waiting for me when they say it will be. 7 years without a hitch. I think that they are more caring than most Drs. because they are hands on with their patients. . . Q
Posted 9/27/2014 4:25 PM (GMT 0)
Lorie, if you decide to stay on Lyrica you really need to check out GoodRx.com for coupons as they may be able to save you a bunch of money even with your script insurance. We found out about them after the fact, but had we known we would have saved right at $70 on one script.

As the others said the contrast is not something to get worked up over. I always get a warm feeling when having the contrast but it also goes away pretty quick.

Good luck.
Posted 9/27/2014 5:06 PM (GMT 0)
You can't beat GoodRx.com . . .Q
Posted 9/27/2014 5:07 PM (GMT 0)
Thanks, Susie. I checked GoodRX.com, and the price I ended up paying was actually about $100 cheaper than what they are showing with their coupon. I will keep them in mind, and maybe other sites too, and shop around before I need a refill.

Thanks, y'all, for the comfort and support about the CT dye. I guess if I can stomach that "smoothie" I should be good for anything. (Have had those twice and threw them up before the hour was done and had to drink more!)
Posted 9/27/2014 6:16 PM (GMT 0)
Hey Lorie...Have you ALREADY gotten the Lyrica?

Dixie

I'm asking because at that high price, it would seem she could have given you some samples for "trial" before your making such a huge investment (only to find it's not for you).  Or even maybe have the pharmacy fill just "half" the script?

I'm not trying to discourage you in any way, believe me.  But I've been there, been back again and again...done that WAY back when Lyrica was a brand new drug.  My experience is that doctors will sometimes throw all of those types of meds until the patient feels that something "sticks".  Just be careful, sweetie.

PLEASE follow through with the CT scan, so that perhaps you can KNOW what's causing your pain.  I know that concoction is YUK, but it's worth it to KNOW.  I wish it were more like the full body bone scan I had last Fall.  They injected the contrast via needle in my arm.  MUCH different test, I know, but no worries of projectile vomit, either=)

I understand both your husband's (and your) desperation for you to feel better.  Just don't allow that desperation to cloud good judgment.

Oh, and YES, an NP far surpasses MD in compassion.  I'm so happy that you've found someone to LISTEN.

HUGS~~Dixie

Posted 9/27/2014 7:00 PM (GMT 0)
Thanks, Dixie. Unfortunately my wonderful husband paid the whole price of the script this morning and brought it to me at work so I could start on the first dose immediately. The only reason we went ahead and paid it was because of the difference in what we WERE paying for insurance compared to what we pay now. I could almost get TWO of these filled for about what we were paying out in monthly premiums. So, if you think of it that way, we are "ahead" of the game.

I had wondered about Fibromyalgia but my other doc dismissed it. I do appreciate her thinking outside of the usual box. I have also wondered if I have the beginning symptoms of MS. I get lots of tingling and random muscle spasms and twitching, and pain that seems to just jump from one area to another. So glad God doesn't let it all hurt at one time!

This NP didn't used to be quite so nice though, so she's softened over the years. Many years ago I had about a six month bout of anxiety attacks. She tried to medicate me for that and depression and it never worked- the depression meds made me much worse.They don't happen anymore, but while going through them and trying to talk to this NP, I always felt like she was looking at me with distrust and like I was nuts. I don't take anything for anxiety or depression because I no longer deal with those things.

I will follow thru with the CT scan and I won't take things too far when it comes to using good judgement. Thanks for that warning. When they did your body scan, with contrast you said they injected into the arm. Are they going to inject me someplace else?

Dixie, I just want you to know, I really feel for your pain. My pain is NOTHING like what you experience, and my 'adventures' with many docs cannot be compared to yours. I hope the shingles are better, and that you can finally get some relief. Curious: are you able to hold a job with all this? I can't see how you could. I am very fortunate that my pain isn't debilitating to the point that I can't work. I do worry it will get to that point, and that scares me dreadfully.

At this point I am still determined to find an answer, and eventually relief for the pain. If nothing else, I hope that the CT shows that yes, there's adhesions or something causing my pain. Meaning my pain isn't all in my mind, and if I say I hurt, I'm not just looking for pills to get high or something.

Take care, all.
Posted 9/27/2014 8:09 PM (GMT 0)
well rest and relaxation has help me more than anything else. I am too old to run around kowtowing to all these docs around here in the woods. I think I would be better off dancing around a tree.
Posted 9/29/2014 5:44 PM (GMT 0)
Hi Lori, I truly hope Lyrica works as well for you as it does for me. It lowers my pain by a couple of points & basically stops neuropathy symptoms like numbness, tingling, radiating pain, etc. I didn't think it helped me one bit for a few months but then I ran out & that's when I noticed it was making a difference. Does it make sense to say that the absence of pain is not as noticeable as when you have pain bc that's what happened. First few weeks it made me drowsy but taking it at the exact time helped that to resolve too. I made the mistake of taking it before bed at 11:30 pm appx & then took it again with meds first thing in the morning, 6-7 am, so truly not 12 hours apart. That is the same scripture I rely on too! I will be hoping with you that the lyrica works! Also I cannot remember or find the name of this physical therapy treatment they used on me for a muscle spasm so severe it was on the nerve that enabled me to walk & the pain was the most severe but it was a big black box with electrodes in physical therapy & it completely exhausted the muscle so that it went flaccid & couldn't contract, a much stronger current than a TENS & it saved me. I had it put on 3 times a week for a month & myofascial release massage. I literally got out of a wheelchair I had to use bc so bad. Maybe someone else knows the name of this PT modality? Thanks!
Posted 9/30/2014 12:54 AM (GMT 0)
To avoid pain due to twisting and turning while on the toilet use the "Raised & Easy Access Toilet Seat" sold on amazon.
I have had lower back pain for years and finally I have found a toilet seat that makes a daily routine much easer on me. I used to struggle to use the toilet, but now not so much. I recommend this seat to those in a lot of pain!!
Posted 9/30/2014 2:37 PM (GMT 0)
Thanks for the advice, McKaren. I don't see a difference yet, and I've titrated up to 225mg / day. She said I can go up to 300mg / day within the week if I don't notice a difference. My only bothersome effect so far is the dry mouth. That's because taking that in combination with the Zanaflex, which also causes dry mouth, the effect was doubled! I woke up during the night coughing dry because there was NO wetness in my mouth- wow!

I know the electrodes well, and have done that plenty of times. (I don't know if there's a special name.) It seemed to help for maybe an hour after, but that was it. Glad it worked so well for you. And the TENS only helps while I wear it, kind of a distraction technique and nothing more.
Posted 9/30/2014 3:50 PM (GMT 0)
Hey Lori...When is your CT scheduled?  I SO hope you're going through with that.  If at all possible, I would want a definitive diagnosis before starting a treatment.  I know that's your desire as well.  I am very interested in your results.

I've heard there's a wonderful endo specialist, Dr. John Dulemba, in Denton, TX.  I don't know your location, so I'm not sure that's doable for you.  I'm considering the possibility although it would be a HARD 10 hour drive one way.  He has found that adhesions are causing majority of pain in women post-endo surgery.  It would make sense, as scar tissue is the body's way of healing the blood filled lesions of endo, as well as surgical trauma.

What a tangled WEB, literally, this disease does weave=(

Hugs~~Dixie

Posted 9/30/2014 4:01 PM (GMT 0)
I'm going through similar right now, undiagnosed pain, and these folks here have given me ideas on how to move forward if my next appointment is another bust. My neurologist seriously threw his hands in the air and said "I don't know".

I've had several CT scans of my chest, I've never had a problem with the contrast dye (nodules in my lungs they wanted to keep an eye on until they were certain it was scar tissue). I remember when I was going in for my first one, my mom warned me it feels like peeing your pants. I didn't believe her, until it felt like I was peeing my pants lol! Its just a warm sensation all the way through, that is assuming they are still using the same stuff as they did six years ago.

Anyways, I'm really hoping the new meds will help and something will show. You've been chasing this for years it sounds and I am deeply sorry, I'm starting to lose my mind at just a few months. I saw mention of cream up a few comments back. Every so often at home we use Tiger Balm or Woodlock Oil on my back and legs. Some days it seems to help confuse the nerves to get relief, some days it makes it worse, but both of those you can pick up without a prescription and they are very strong. I would highly suggest starting in a small area first just to see how your back reacts before coating the whole thing.
Posted 9/30/2014 5:30 PM (GMT 0)
Dixie- my CT is scheduled for this Thursday. Yes, I am going through with it, and with the dye. I had a nurse tell me on Sunday when I mentioned how concerned I was, she just said to drink plenty of water after, so I can flush all that stuff out of my system.

Pain relief would be great, but if nothing is working, we NEED to focus on what is causing the pain. Thanks for your agreement with that.

I'm in VA so there's no way I can come to TX. Truly, I don't know what we'll be able to do with the information, even if it IS adhesions. Will that change what I've been doing? Will it only make me breath easier because they aren't finding a tumor? I just don't know. If surgery causes the scar tissue to begin with, then another surgery to remove the scar tissue will just create new. But maybe even with just that as a diagnosis, doctors can stop looking at me like I'm a whining baby, that I'm not just looking to get high on pain meds, that I really do hurt and want to stop hurting.

Sunny- I'm sorry about your pain too. I've had numerous docs throw their hands up and say the exact same thing. You must keep trying to find someone to listen to you, someone who is willing to think "outside the box" and take everything into consideration.

I must say, probably for the second time, how I have found this site and all you members so encouraging to me. The feeling that I'm alone in all this, the feeling that people think I'm hypochondriac, that I'm making it up, or whining about nothing, all that has been difficult to deal with. I do NOT have the extent of pain that so many of you all deal with, and my pain levels are somewhat low, even though constant.

I truly appreciate how you have all surrounded me with suggestions and letting me know I am not alone in all these struggles. I pray you all find some relief!
Posted 10/3/2014 4:21 PM (GMT 0)
Okay, everyone. I had the CT scan yesterday. The results came back as only showing gall stones. Seriously!? Are you telling me that my back pain for FOUR YEARS is being caused by gall stones? And there's been no change in my pain in four years, and it's just gall stones!?

I mean fine, if I have gall stones, fine. But don't blow me off saying that's what is causing pain for four years, because I'm not buying it. I have an appointment scheduled to see a general surgeon next Friday, 10/10. I won't know until I see him if I need to have surgery.

They said they really saw no adhesions or anything else on the CT scan. At this point I'm completely non-plussed. And I don't know what else to do.

On the bright side of things, (I guess) is that the Lyrica does seem to be helping the pain. I upped my dosage as of this morning to be 150mg twice a day, which is what the Nurse Practitioner told me to do.

I guess I should be happy they found no tumors or weird growths or anything. But I feel like my NP has already written me off now that it's gallstones.

I guess I should just calm down, have my surgeon appointment and just continue to take it one step at a time. My husband was relieved of course.

This CT scan has put us past our deductible period at least, so now the insurance will cover 80%, I think. So I guess if I need surgery it would be good to do it before renewal.

Post Edited (Lori McD) : 10/3/2014 10:32:52 AM (GMT-6)

Posted 10/3/2014 4:50 PM (GMT 0)
I have no idea if gall stones can hang around that long without getting larger and causing more pain than what you have had. That's probably been checked before, maybe it was ignored before?? Well, at least that's something 'fixable' and it just might be your solution. I certainly understand your feelings, but let's see what the surgeon says.

My gall stone story is that I made several visits to my primary, had lots of tests that said I had 'sludge' rather than stones but I was still having painful attacks. Finally just went to a surgeon on my own who diagnosed me from my symptoms and confirmed it when he saw the report of 'sludge' and translated it to stones while shaking his head that it had been worded that way. Surgery, followed by no more of that pain.

I hope you have a very happy ending to this painful ordeal!!

Post Edited (Abilene) : 10/3/2014 2:11:15 PM (GMT-6)

Posted 10/3/2014 6:23 PM (GMT 0)
No one ever mentioned gall bladder or stones to me before. My chiropractor used to say that my liver "showed up" during her examination, and she would always bend and massage just under the ribcage on the right side. That's the closest thing to anyone mentioning anything.

I have an appointment with a highly recommended general surgeon for next Friday. Maybe he can see something else on the CT scan that could be causing all this pain for so long. My trouble is this: working full time, I have one day off each week, so I have to work within those parameters. This also makes surgery scheduling very hard! I work in a very busy high end jewelry store, and my busy time starts now, October, which is our year end. THEN comes the influx of new merchandise and all the customers for the holiday season. Oh, and I'm in the church Christmas drama AND choir! I don't have time for a surgery!

Since I'm noticing so much relief on the Lyrica (unfortunately) I wonder if I do fall into the Fibromyalgia category. I have also been asked by a family member to schedule an appointment with a really great neurosurgeon. He's already booking for December, so I feel better about making an appt with him for January. That gets me past the season, and things will calm down a bit. He will also want a new MRI, so there's more money to throw out the window if it doesn't show anything.

Summary- still frustrated and a bit confused. But my back pain is actually better so I should not be complaining so much! Praising the Lord for some relief!
Posted 10/6/2014 1:55 PM (GMT 0)
So, I asked for a copy of the CT report. There's a ton of big words that I promptly looked up online. One phrase in particular stood out: "Mildly Heterogenuous Uterus". This means that the uterus is somewhat not uniform in shape. This got past the tech that read the scan, it got past the Nurse Practitioner, and the nurse that called me...I DON'T HAVE A UTERUS!!!

At first I wondered if the reports were mixed up, but I noted that the exact same spinal areas that have been diagnosed on previous MRI's, L5, S1, S5, etc, are all showing up on the scan, as well as "blah blah something" consistent with appendectomy. So they can see I have no appendix, but they actually SEE A UTERUS?! Am I such a SuperWoman that I grew a new one?!

I'm not going to call the NP's office. I will wait until I go to the surgeon this Friday. I'm still shocked this wasn't caught by those that have my records. Something is going on! And if the docs aren't going to notice it, then we need to be persistent!

For now, I'm continuing with my meds as usual, and I'm at 150mg / twice a day for the Lyrica. It has now stopped really working for me. This is what usually happens- a new med will work for about a week then quit helping. Back to constant pain (low level, for the most part thankfully.)
Posted 10/6/2014 2:53 PM (GMT 0)
Hey Lori...I WOULD BE CALLING THE NP...In fact I'd have her on speed dial.  If she treated you post-hyst, she should be aware that you have NO uterus.  I'd want an explanation.  It's my experience that your general surgeon will have tunnel vision towards gallstones only.  Heaven forbid they look at the BIG picture.

I'm certainly no expert, nor do I claim to be, but I implore you to see a specialist in endometriosis. Please find one closer to your home state.  There are ladies who fly across the country to see the best ones, but I cannot. I was afraid you were in the honeymoon phase of Lyrica, but remained "hopeful" you'd found relief.  BTW it befuddles me that they can tell you that NO adhesions are visible, but oh, you have a UTERUS=(

I hope you find answers and relief, Lori. Please keep us posted.

Hugs~~Dixie

Posted 10/6/2014 9:50 PM (GMT 0)
Hi Lori, I just wanted to stop by and also Welcome you to the forum. I want to confirm that the Gall bladder can indeed cause back problems. I know I had to have my Gall bladder removed a few years ago, I would get pain under my right shoulder blade, and around my ribs. After a very long time, I had a NP press on my abdomen around my liver, and asked if it hurt, or was tender, I told her no it did not hurt my abdomen, but when she did it I felt pain in my back and it would spasm up! They did a Hida scan and sure enough it was my Gall Bladder! Not saying that, that is definitely what is causing your pain but it is possible!

If your having allot of generalize muscle spasm in your mid back, ( I know that they are terribly painful, as I have some thoracic disc problem that are impinging on nerves that cause spasms) Anyway I have problems with muscle spasms most everywhere, and I take Baclofen for them, and it has been a real Godsend for me, in controlling them! I take a very high dose, 30 mg every 8 hours, but allot of people get good relief when on a much smaller dosage. Something that might be worth talking with your doctor about, if you find that the Gall Bladder is not the cause of your back pain and spasms.
I do wish you well and hope that you can get some relief soon!
Good Luck to YOU!

White Beard
Posted 10/7/2014 12:25 PM (GMT 0)
When I read your description of when your NP pressed on your abdomen, I was shocked! That's exactly my experience!

Unfortunately, Baclofen did nothing for me. I don't remember how high my dosage went, but I worked with it for months hoping for relief. Same with Neurontin, to no avail. Now it looks like the same for the Lyrica.
Posted 10/7/2014 12:48 PM (GMT 0)
Wow, um ... I would probably seek a new radiology department.

I hope you get answers soon. :(
Posted 10/9/2014 9:45 PM (GMT 0)
Okay, I finally got a call back from my Nurse Practitioner. She had spoken directly to a radiologist- a different one than had originally read my scan. He agreed that it looked like "normal uterine tissue"- "Yes it looks like a uterus."

He compared the CT scan I had pre-partial hysterectomy in 2004- and this image looked a little larger than the current image. Then he compared to my CT from post-hysterectomy in 2009 when I had appendicitis. He said that image looked visually the same as this one from last week.

Summary- part of the uterus is still there. Good news- it looks very normal.

Talking with the NP: Could it be endometrial tissue? Possibly. Could it be adhesions? Unlikely.

What next? I will keep tomorrow's appt with the surgeon to discuss gallstones. Of course I will mention all this as well. It is possible if he decides I should have my gall bladder removed that he could do an exploratory lab while he's there to check for endometrial tissue.

After my visit tomorrow, I will also be calling my GYN that did my surgery. I recall CLEARLY when I asked him if the endo came back what do I do- and he told me I'd have to see someone else because he's taken out all the female parts, so he won't do more surgery. He thought he took it all!! I never saw that surgeon report from then and I didn't think to ask for copies of my old CT scans either.

But this all looks very interesting. My NP said I could have TWO uteruses, but I've never heard of such a thing. Don't you think my doc would have seen the second one when he was in there TWICE!?

So here I am, still confused. But I am calmer now. I had worked myself up to the Cancer word and was starting to get panicky.

Let me share the verse I discovered last night before we went to bed: Proverbs 3:24-26- "When you lie down, you will not be afraid; Yes, you will lie down and your sleep will be sweet. Do not be afraid of sudden terror, Nor of trouble from the wicked when it comes; For the Lord will be your confidence, And will keep your foot from being caught."

God's got hold of me through this too!
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