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Posted 12/31/2012 11:48 PM (GMT 0)
I'm new here so I hope there is someone out there who will read this and might have some advice.

I began having pain on the left side of my mid back area, about level with t9 around 14 months ago. Within two months a burning itching prickling sensation, (doctors call it dysesthesia) began radiating from that spot and eventually covered my whole back, arms and legs, and sometimes stomach. The sensation never stops either, its congruent with the pain.

I have had epidural steriod injections, rf ablations, trigger point injections, used every drug on the market (neurontin, lyrica, cymbalta, amitryptiline, celebrex, klonipin, doxepin many I can't remember) Nothing relieves the pain or itching. I spent two weeks at the Mayo Clinic and they were unable to determine the source of my problem. They said they had never seen anyone with these symptoms before. All imaging and tests showed no real cause for what's wrong. I'm seeing a neurologist, physiatrist, gastroenterologist and a internal medicine D.O. in the next two weeks at the advice of the Mayo staff.

I can hardly fathom that someone can have pain in one spot constantly for this long and no doctor can diagnose a cause. I'm losing my life slowly, more and more each day. Has anyone out there ever heard of anything like this. Any suggestions would be welcome.
Posted 1/1/2013 12:02 AM (GMT 0)
Hi there...welcome to the boards...We are always sorry to see someone new with chronic pain but glad you found your way to us.

No one here is a Dr....we are just pain patients like yourself but happy to share any information, thoughts, and suggestions we may have as well as plenty of empathy!

I'm assuming they ruled out a herniated disc in that area of the thoracic region as that would be one of the first things they would look for....

And if you have already stayed in the Mayo Clinic for two weeks with every possible Dr. and test they could do and found nothing...then I can't imagine what the issue could be:(

Especially if you don't have pain anywhere else but this area...Something like Fibromyalgia is when there is pain all over the body....

Have the recommended that you see a Pain Management Dr.? Although I'm sure it's harder to get any type of help medicinally if they don't have any type of diagnosis for you. With the DEA and states tightening up their regulations, prescribing stronger pain meds is not something they like to do without tests or surgeries to show why the pain is there.

I really feel for you as the not knowing is just as bad or worse than the pain itself! The only good thing is that really major health issues have been ruled out as in cancer or severe herniations that need immediate surgery.

Did you end up giving the nerve pain medications a month or more each to really see if they worked? It takes time with those types of med to really build up in your system and get to an appropriate level...Especially the Neurontin....(what dosage were you on of this?)...

There is another poster who is having good nerve pain reduction with the medication of Savella....and another is using Nucynta. So those are ones to try if you haven't yet.

It certainly sounds like nerve pain the way you describe this with the itching/prickling sensations..

I don't see you mention a TENS unit....is this something you have tried?

Just trying to throw out some suggestions....I'm really sorry that you are having such difficulty. Others will be on over the next few days as it's a bit slower with the holidays.
Posted 1/1/2013 12:56 AM (GMT 0)
Glad you turned to us, and finding us here on the net. This is a good place to be, for those dealing with chronic pain, regardless of the cause. Sometimes even with the most severe of pain, all the tests and scans in the world can not always pinpoint the source. But that doesn't mean the pain isn't real.

Most of my chronic pain is "cancer related", but so far, there hasn't been any scan, including MRI's that actually show the exact source or spot. However, my oncologist accepts the fact that the pain is both real and severe, and acts as my personal Pain Manager. He knows how important my QOL issues are as I am fighting an advanced and now uncurable cancer.

We are here for you. Vent if you need. Ask all the questions if you want. You will find solace and friendship among the family here. We all hurt bad, to various degrees and for so many reasons, but share that common ground among ourselves.

Glad you found us, hope we can help you along the way. And you never have to feel alone in your pain.
And never give up hope.

david in sc
Posted 1/1/2013 12:56 AM (GMT 0)
Tried neurontin at 1800 mg two months, seeing a pain management doc, he's the one who sent me to Mayo, been trying a TENS, seems to make it worse, tired nucynta and savella, thanks though. You go through alot in 14 months and that many docs.

You're right, if I actually knew what was wrong at least that would be better than now. Appreciate your help, really.
Posted 1/1/2013 1:06 AM (GMT 0)
You've certainly tried a boatload of medications in the last 14 months! It's such a shame that nothing is even putting a dent in it. That's really all we can hope for when it comes to those of us with chronic pain...it's not about being pain free anymore for us.

So I use about a dozen or more modalities each day/week/month to help get my pain level to a decent level.
I do daily exercise, physical therapy, yoga/stretching, injections, steroids, acupuncture, massage, aqua therapy, TENS unit, ice, heat, eating healthy, counseling, etc...

As well as I use a muscle relaxer when I get terrible spasms..I use Flexeril.

Have you tried any of these? Flexeril or Amrix, Robaxin, Skelaxin, Baclofen, or Zanaflex? It may be something that can at least take the pain down a notch...

Each modality is like a piece to a puzzle to all add up together to get the pain to about a level 5 or so. So absolutely nothing you have tried...not a single medication even put a small dent in the pain?

And you didn't say, but I had asked whether they ruled out any type of actual herniation or bone spur going on in the spine that they could treat surgically? I'm thinking they did but just thought I'd ask...

I certainly feel for you....
Posted 1/1/2013 2:37 AM (GMT 0)
Welcome to the forums 59, WOW you have certaiinly been through it. I can only imagine the frustration along with the pain. No answers are scary at best.

I can tell you that it certainly is suggestive of some kind of nerve condition but they seem to be looking. When you first started describing your symptoms I would have bet shingles even if you didnt mention a rash of any kind and I have seen one other person that was DX with it and never developed any kind of rash.

I had similar kinds of pain when I had encephalitis due to the inflammation of the nerves at the base of the brain. I have seen some of your symptoms in some of the mosqiuto born diseases as well. But and I hate the word, yours seem to be all over the board.

I can say that with over a 100,000 or so members here someone has to see this and recognize your symptoms and have something maybe to go on or try at least.

Im wishing you luck and sending you hugs too! Sheesh thats alot on your plate with no relief.

Vickie

Posted 1/1/2013 4:48 AM (GMT 0)
Out of curiosity have you had any surgeries of any kind in the chest or abdomen area?

I once went through something similar a few years ago in the shoulder blade area. X-ray, CT, and MRI didn't show anything really wrong in that area and all the nerve pain meds did no good. Doctor ended up sending me to physical therapy thinking it may be muscular in some way.

When the therapist examined me she noted a scar about six inches away and had an idea. She started thinking that maybe the scar from surgery had formed "wrong" and had impinged a nerve and suggested doing an intensive massage therapy to break up some of that scar tissue. It took a few weeks but I started feeling better and after 6 weeks or so of 3x's a week massage therapy no more pain in the area.
Posted 1/1/2013 12:08 PM (GMT 0)
Jim you may be onto something. My daughter while playing with a friend when she about 10 somehow ran her entire forearm thru a plate of glass in a door. She severed the nerves and muscle and nicked an artery at the base of her thumb. After surgery to repair it all she went thru months of extensive PT and OT but years later still has numbness in her thumb and part of the palm.

she also has redirected nerve pain that just makes no sense at all,the pain is in her elbow and back of her upper arm both well away from the injury,she also cant explain exactly how it feels other then really strange burning,tingling really sensitive to any touch. Even touching the scars she "feels" the touch somewhere else in her arm.

At this point they say it will always be this way as the nerves grew and healed crossing other nerves?

So I see where what your saying is a real possibility.
Posted 1/1/2013 3:27 PM (GMT 0)
no surgeries there or damage of any kind. imaging shows no herniations just normal degenerative wear for my age. To me it feels like there is something in that quadrant of my upper back that is not supposed to be there, almost like a fullness or a tightness, Every time I say something like that to a doctor they dismiss it because nothing shows on the mri. They will only treat what they can see. Medicine has advanced so far that doctors treat tests not people anymore.

how do people with little hope of ever finding a solution fight the urge to end it all. it was the first thought I had this morning. It scares me. Sometimes I see no reason to go on.
Posted 1/1/2013 3:59 PM (GMT 0)
Hi HW,

I get the same tightness and tingling in my upper back. It feels like someone is stretching out a rubber band in your back. Its a totally different feeling than a pulled muscle. Right now I'm having the same issues in the top of my left lower arm. I've been told that I have chronic myofascial pain syndrome. Myofascial pain symdrome does not show up on MRI.

The tingling and prickly feeling comes from, if a nerve that runs through that band of muscle is being pinched.

I see you've had trigger point injections, I know they did nothing for me in. Some people they work great on. I do get some relief from having stretch and spray done at PT. Of course for me that relief is short lived.

I do get some relief from Zanaflex. It doesn't make it 100% better, but hey even dropping the pain level down a point is a blesing in my eyes.

I know you've said you've tried a bunch of different meds, but have you tried a muscle relaxer? There's a bunch of them out there and if one doesn't work another one might. I know flexeril did nothing but knock me out but the Zanaflex works well for me.

Hope you get an answeer from your docs soon,

Tina
Posted 1/1/2013 4:27 PM (GMT 0)
Good morning and welcome to the chronic pain forum. I am so sorry to read that none of the drs have not been able to pinpoint what is going on with you. That is so frustrating when that happens. Unfortunately this is something that happens a lot. What is worse is when you go to see a dr and the tests are all negative, the dr loses interest in you really fast. If this were me, I would be getting all of my records together and make an appt at one of the teaching hospitals. Alot of times they find things that others completely miss. If you will look in CP101 at the top here you will find a list of teaching hospitals and hopefully one will be close to your home. You can't just give up, you need to keep pushing for answers as hard as it gets at times. You know your body better than anyone and you would not be feeling as you do if there wasn't something wrong. Many times we do have to advocate for our care and that is ok too.

We do have rules here set out by the administrator and discussion of self harm is not allowed. When you get a chance please take a look at them. The rules help us all to keep rowing this boat in the same direction so to speak. Anyway, I just want to say welcome aboard. Take care....Susie
Posted 1/1/2013 5:06 PM (GMT 0)
Thanks for advice and thanks for the fyi. I've tried zanaflex , fexeril and norflex. Some made me sleepy but none helped with the pain or itching. I went to the Mayo Clinic which is a center of excellence. The University Hospital and medical center in our state takes patients by referral only and the doctors I've seen think it wouldn't be any better than going to the Mayo.

I really got on this forum after having tried just about everything in the hope that some one in the world had found some thing similar and could give some direction but it seems we all think alike and there is only so much medical intervention to go around. Once its been tried its been tried. You want it to work so badly and when it doesn't your devastated. You all in your kindness have said to me what I would say to you. I suppose what we all want is for someone to say- here's what's wrong and here's what we do to fix it. I have hoped for that for a long time.

I'm wondering where to turn next. No self harm just less hope.
Posted 1/1/2013 6:17 PM (GMT 0)
Hw1959, so sorry to hear about all that are going thru. It is very frustrating to be going thru such pain with no dx, plan or real answers. Sometimes I feel like I am going crazy when the pain levels are high and the combo of meds, SCS, and other modalities just dont seem to help at all. I find that talking to others, realizing I am not the only one that is frustrated is sometimes the best medicine.

I have said it a couple times over the last few months but I feel that it may be time or me to consider some sort of meds for depression. Not sure if you take or have considered trying these sorts of meds. Despite being a very down to Earth strong person, chronic pain can eat away at your motivation and leave you in a not so nice place. Have you considered these sorts of meds?

I hope that the new year gives you some renewed hope that the drs will be able to manage your symptoms and find a cause.

Hugs,
Shell
Posted 1/1/2013 7:20 PM (GMT 0)
I am so sorry none of us here have not experienced any of your health issues so we could have pointed you in some direction for a change. Just know that you are not alone, there is always someone hear willing to lend a ear. Thats the beauty of this forum, you are never alone. So, please that in mind. We do make up a pretty good cheering team.

Take care.....Susie
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