New Here, Facing Some Medical Tests - Scared

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KiwiPi
Regular Member


Date Joined Nov 2010
Total Posts : 31
   Posted 11/17/2010 10:38 AM (GMT -6)   
Hi Everybody,

I just became a new member last night and am hoping that I can get to know some people who have been in my situation before. I have been struggling with what is, as of today, still undiagnosed pain in my mid and upper back, concentrated around the right shoulder blade, for about three months now. It's excruciating and life-altering, and up until now has been unresponsive to the treatments I've been given (trigger point injections and meds - Flexeril, Soma, Robaxin, Vicodin, Percocet). Physical therapy has made it quite a bit worse, and is on hold for now.

I saw my GP yesterday, who is "heading up" my treatment, and he finally said that we need to start looking at some possible systemic causes - Lyme Disease, lupus, MS, RA, and so on. I also have an MRI scheduled for next week. He also started me on OxyContin, 20 mg 2 x per day. I have to say up front that I feel a little sheepish posting here: I have not experienced the trouble in receiving treatment for this that many people here have communicated in their stories, and I really feel for everyone who has not been as fortunate.

I'm feeling, at any rate, a bit frightened about whatever is going on with me. I've come to the conclusion, right or wrong, that it may well be something serious because the pain never seems to stop, it just gets worse. Does anyone have any advice to offer when in this stage? It almost seems like not knowing what the problem is could be worse than actually knowing.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/17/2010 10:48 AM (GMT -6)   
 
    Hello KiwiPi!
 
      Welcome to the CP forum! I too suffer upper back, or really what I believe to be neck pain, and it does radiate down to my right shoulder blade. Mine is from having DDD, and a MRI confirmed it as well. It is just a guess on my part, but I'm betting that the MRI will show something for you. If it is confirmed as DDD, you might be suggested an Epidural, and this may or may not give you some relief.
     Please do keep us updated on the MRI results if you will. Again!...welcome to the forum.
 
    We have a great support group here, and I'm sure your going to enjoy it! wink
 
  SE wink

Jim1969
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Date Joined Jul 2009
Total Posts : 2042
   Posted 11/17/2010 11:27 AM (GMT -6)   
Just out of curiosity have your doctor's checked your gallbladder?

My ex wife went through something very similar to what you are describing. A first she had pain in her upper back, right shoulder blade area that would come and go, then it became steady and eventually got worse and worse until someone suggested checking out her gallbladder. Turned out she had a bad one and once it was removed no more pain.

I am not a doctor and I did not even stay at a Holiday Inn Express last night just passing on an experience I went through with someone. Her doctors too checked her for cancer and several autoimmune disorders, bad discs in the neck and back, etc.

The not knowing is often worse than any possible DX. Try your best to distract yourself from thinking about what it might be, but if you must think about possibilities think about the ones that are not so terrible.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

KiwiPi
Regular Member


Date Joined Nov 2010
Total Posts : 31
   Posted 11/17/2010 11:46 AM (GMT -6)   
It does seem like some doctor mentioned checking my gallbladder (I just can't remember which one - I have a GP, a pain doc and a psychiatrist) but I don't know if any of my upcoming tests have to do with that. I'm supposed to be hearing back from my GP's nurse late this week, I think, and I will ask about that.

The weird thing about this pain - something nobody seems to be paying attention to, really - is that the affected muscles are really knotted up, worse than any sort of knots I've had in my life. They're small knotted areas, but the muscles feel like rocks in those spots and generate severe pain the can reach all the way down my arm at times. They are completely unaffected by massage or myofascial release - they just don't budge. To me, this is significant, but nobody else seems to think much of it.

KiwiPi

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 926
   Posted 11/17/2010 1:59 PM (GMT -6)   
I have scoliosis in my cervical and upper thoracic spine, along with the typical degeneration: damaged disks, narrowed neuroforamen, bone spurs, etc.. I never had any pain in that area until my late 30's and didn't even remember that as an adolescent I was diagnosed with scoliosis.

The most severe area of pain is beside my left shoulder-blade, just to the right of it I have a burning stabbing pain. The pain is worsened by arching my upper back forward and/or bending my head down so my chin touches my chest. Some days I have to leave the dinner table and lie down every few minutes.

Given the location of your symptoms, be sure that they x-ray your cervical and upper thoracic. I think the nerve for that area has its root at c4-c5 cor c5-c6. I am assuming that they are also MRI'ing that area.

The three things (other than pain meds) which help the pain are: 1) hot shower, 2) using the hook of my cane to press on the area, 3) have my wife stretch that area (lying on my stomach, arm bent as is scratching back of neck, she pushes down between the spine and shoulder-blade and pulls upwards on my elbow). I can imagine 2 or 3 making it worse if your issue is different than mine, but hopefully at least 1 may help.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 11/17/2010 2:41 PM (GMT -6)   
Hi Kiwi and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but very glad that you found the forum. Have you had any sort of an accident or trauma type incident to bring on the problems you are having or did they just appear out of no where?

Many times people will have shoulder and mid back pain when they in fact have an actual neck problem going on. Its kind of a two edge sword dealing with your situation and about the best thing that may help figure out what is going on is for you to have an MRI of the neck and also one of your shoulder. I have been in your situation and it was so difficult at first for the drs to know what was causing what. The MRI on my neck showed multi-level disc herniations and the MRI of the shoulder revealed impingement and arthopathy problems and some other stuff so I actually had two different type of things going on. After the MRI's the drs then knew what direction to take with me but before that I was totally miserable and nothing helped. I was working at the time and the only thing that kept me going was high doses of steroids given IM and more trigger point injections that anyone can imagine. I was like a pin cushion and over time built up a lot of scar tissue from so many trigger points being done. It was the only way to get the spasms down as nothing else worked. Sometimes the needles would not go in because the spasms were so severe. I do not recommend going off and doing anything unless it is all approved by your dr. Keep in mind none of us here are drs we can only tell you things we have done but that does not mean what helped me may not help you either. Each persons medical situation is so different and unique to that person, it is not a one size fit all type situation.

I had to have my gall bladder removed because after having a HIDA Scan it showed it was not functioning the way it should have. I did not have any stones either. I remember with the gall bladder a lot of nausea, dairy products of any kind will set off a gall bladder attack, I had pain in the middle of my stomach high up that radiated around to my mid back. Thats when they figured it was the gall bladder.

You know you hit it on the head about the not knowing. That is more worrisome than anything, the unknown. The best thing I can tell you is try to stay as calm as possible until they get to the bottom of your problem. Staying tensed up and in a knot will only make matters worse. I know easier said than done. In other words don't worry until you have to.

At this point any dr you see will only render what is called conservative care until they can come up with a dx. Push for an MRI on your shoulder too, not just your neck. The neck & shoulder can mimic each other in symptoms.

Anyway, I wanted to pop on and tell you welcome aboard. Take care.
Moderator Chronic Pain Forum

KiwiPi
Regular Member


Date Joined Nov 2010
Total Posts : 31
   Posted 11/17/2010 7:14 PM (GMT -6)   
Thanks to all for the welcome and the information. I have to say that a few kind words go a long way in making a person feel better, I appreciate it so much.

As far as accident/injury, I have no recent history of anything like that. I showed horses for years and certainly took my share of falls, but there was never any acute, obvious injury, and I haven't ridden for ages. I have had significant lower back pain for a few years, and before this business w/my neck and shoulder started, the lower back pain started up again first...but nobody is really sure if there's a connection there. I had an L5/S1 epidural cortisone injection a couple of weeks ago, which had previously been helpful for pain in that area, but this time it didn't do much. It also felt like my doc hit a nerve during the procedure, so there was some additional pain. At any rate, my pain doc was hoping that relieving the lower back pain would solve the "other" pain, but there was no improvement in either area, only a worsening of whatever is happening with my neck/shoulder.

Cogito - I have actually tried some similar things to what you suggested with a little bit of success; hot showers seem to help, or minimally have a calming effect. My physical therapist told me to try lying down with a racquetball under my shoulder, and surprisingly, that does seem to work for a little while, even if it is a little painful initially.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/17/2010 8:27 PM (GMT -6)   
Hello,
My opinion would be to wait and see what your MRI's show and then to proceed from that
point, don't panic yet. Maybe get a referral for a neurologist and see if nerve testing might
pinpoint your pains orgins, but wait till you get the mri's done. good luck and
well wishes to you in hopes that you can get a low pain day soon.
(((((((((((((((((((((((((((((((((((((((((((((((((((((((KiwiPi)))))))))))))))))))))))))))))))))))))))))))))))))))
Healing hugz and prayers
**********************************************
* 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"...

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

KiwiPi
Regular Member


Date Joined Nov 2010
Total Posts : 31
   Posted 11/18/2010 11:10 PM (GMT -6)   
I really appreciate the recommendation everyone has given to just wait until some of these tests come back to worry too much. (Well, actually, I think I'll try to minimize the worry, regardless). smilewinkgrin

Anyway...today I saw my physical therapist. He's still in this stage with me where he gently palpates all sorts of points on my neck, back and shoulders, and asks if there's any change in the pain (it's just my third appointment). I never know what he's really up to, so I finally just asked him if he was seeing any sort of pattern, and he got extremely vague. He didn't seem to want to say much. Finally, he told me that some aspects of what I'm reporting resemble Complex Regional Pain Syndrome. I made the mistake of Googling it when I got home, and I think, now, that I'm going to keep my questions to myself until I know more. confused

KiwiPi

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 11/19/2010 9:06 AM (GMT -6)   
Hi KiwiPi,

Sorry I am late welcoming you and I am sorry that you are suffering! I just wanted to stop in and say hello and welcome! Hang in there and don't panic! I know that it is easier said then done, because I am waiting on a DX also! Hoping for the best for you and looking forward to getting to know you!

Hugs,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

KiwiPi
Regular Member


Date Joined Nov 2010
Total Posts : 31
   Posted 11/19/2010 9:34 AM (GMT -6)   
Thanks Beckey! There is so much tension during this whole waiting period, as has been discussed in this thread. I hope that whatever your news is, it isn't too bad. I saw in your signature line that you've got an awful lot going on already. You'll be in my thoughts!

I am really wishing that my providers could be on the same page with one another, especially during this time where they're trying to figure out what's going on. I was just talking to my pain doctor's nurse about my upcoming appointment, and I let him know that my GP put me on OxyContin this week, and I got this really disapproving tone from him. He said, "That's a really hard-hitting medication, and we don't use it at all," as if nobody should prescribe it. My pain doc doesn't prescribe me any medication, so far he just does injections, so I don't see why there has to be such a big deal made. Frustrating.

KiwiPi

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 926
   Posted 11/19/2010 9:58 AM (GMT -6)   
Kiwi,

There are two types of pain doctors in my experience. One type "interventional pain management" do injections but often do not prescribe medication. The other type, what most of us on this board likely go to are the "chronic pain management" doctors. They often don't do injections but instead focus on prescribing and managing your pain medication.

I am concerned from what you said about the nurse, that you're seeing the former. Of course, IPM doctors can be helpful and I've been to a few, but I'm under the impression you're looking for a CPM doctor.

Talk to your GP about this -- and you might need to wait until your MRI's are done to see if there is a chronic underlying condition (your PT's suggestion of chronic regional pain syndrome seems premature -- it is a diagnosis of exclusion -- but your MRI's may yet show spinal issues).
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs)
RT hip and SI joint damage from car accident
Current meds: Ultram ER 300mg daily, daytime breakthrough - hydrocodone 10-15mg, nighttime breakthrough - tapentadol (nucynta) 5-10mg.

Splashdancer
Veteran Member


Date Joined Aug 2009
Total Posts : 928
   Posted 11/19/2010 11:31 AM (GMT -6)   
You are SO right, Kiwi - the 'not knowing' IS worse than knowing. When we don't know what is wrong with us, we are left with imagining all sorts of scenarios, but when we know what the problem is we can then deal with it. The 'what-ifs' can drive us nuts! Just try to stay as calm as you can - distract yourself any way that you can. Good luck and you'll be in my thoughts. :-)

KiwiPi
Regular Member


Date Joined Nov 2010
Total Posts : 31
   Posted 11/19/2010 1:16 PM (GMT -6)   
Thank you, ALL of you. The support means so much, and I suppose that's one major reason we're all here. wink Distraction is always a good thing, when you can actually make it work. Weekends are the worst for me. Too much time to consider the possibilities. I sit here contemplating which of these possible diseases or disorders I would "rather" have if I am faced with having one, and that seems like a sure sign that I need to start occupying myself in a healthier way!

I wasn't really aware of the distinction between types of pain docs, but I realized upon my first appointment back in 2009 that the entire pain clinic that I've been going to takes a very conservative approach to pain, especially where medications are concerned. I don't disagree with that, necessarily, but my feeling is that they have been really slow in responding to whatever is going on with me. They don't seem to have much respect for the severity of the pain and how debilitating it has become over the last couple of months. They wanted to try an NSAID with me, but I take Lithium and it doesn't mix with NSAIDS - even my GP appreciates that.

How does a person go about finding a pain doctor who works more with medication management? Or, one who is at least accepting of people taking pain medication?

Kiwi

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 926
   Posted 11/19/2010 2:24 PM (GMT -6)   
Kiwi,

To find a chronic pain doc, discuss the issue with your PCP. Be sure that he understands that you're not looking primarily for injections but for someone to monitor your long-term pain meds.

My PCP found someone for me. Another option is if you know anyone in the medical field, ask them. Perhaps your physical therapist knows.

You can also look at ratemd.com. Select your geographical area and pain management. Then read the comments. That should also be helpful.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs)
RT hip and SI joint damage from car accident
Current meds: Ultram ER 300mg daily, daytime breakthrough - hydrocodone 10-15mg, nighttime breakthrough - tapentadol (nucynta) 5-10mg.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 11/20/2010 12:59 PM (GMT -6)   
Kiwi it does sound like you maybe need a new set of eyes looking at your medical situation. One thing I want to say about the physical therapists is you really have to watch what they say to you. Many times they will tell patients oh I think you have this that or chicken fat, they are not drs so they are not the ones to be giving anyone a diagnosis. about all they are good for when they start diagnosing the patient is scaring them to death for no reason. So, don't let this guy do this to you. I really get upset when they do this to people. They need to stick with what they went to school for physical therapy!!!

Yes, there are two type of PM drs out there, sorry you did not know that. One way is to see what is available for you is if you can access your health insurance online, go in and see what PM drs are covered under your plan that are in your area. Then call each one and ask if they are taking new patients, how long for an appt for a consult, ask if the dr gives medication if he feels its warranted that you know some PM drs that do not give meds. You can give this list to your PCP to see if he/she knows any of the drs and see if he can ref you. This cuts out a lot of time for the drs office having to find from your plan who is available. Nearly all PM drs will do procedures and injections that is a given, but there is also the one that will write scripts for meds too.

It is so hard when we don't know what is wrong with us and it is a relief when we do finally get told what the problem is. But try not to let the waiting drive you nuts, I know easier said than done. Take care.
Moderator Chronic Pain Forum

KiwiPi
Regular Member


Date Joined Nov 2010
Total Posts : 31
   Posted 11/20/2010 7:14 PM (GMT -6)   
I think that it would be relatively easy for me to switch pain docs, but--and this goes without saying for many, I'm sure--I will need to do some investigating with my insurance. My PCP is part of the network covered by our insurance, and there is only one pain doc listed on their directory. The one I'm seeing now is part of a pain clinic--the only pain clinic--covered by our insurance. Ironically, we live fifteen minutes outside of a huge metro area, but our insurance sends us an hour in the other direction for any kind of specialist. Isn't insurance a hoot? I'm going to have to do some thinking on this.
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