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Posted 4/3/2008 4:16 PM (GMT 0)
As you can tell I'm not new to HW but I am to the chronic pain side of the forum.  I have never posted on here but I have been doing a bit of reading.  It seems many of you are worse off then me that it seems almost silly now to be complaining of what I am going thru.  But I remember what it is that I tell the members on my side of the forum that I frequent that if it's important to you then it's important to bring up.  So I hope you don't mind hearing from me and getting some input?

I have had back pain almost all my life and standing has always been difficult.  I couldn't stand for long periods or my lower back would start throbbing on me.  This started in my teen years and I went to many doctors but they could never find anything wrong with me.  So I let it go because it was bearable.  Well now that I'm getting older, either I'm becoming a major wimp or things are progressing.  I am now seeing a pain management doctor for sacroiliitis - which I guess can account for some of the lower back pain - and I've been getting epidural injections in the SI joint.  These only help marginally and only for a short time.  I've had xrays and MRI's of my lower spine (and head) but it showed nothing out of the ordinary. Even though my primary has already found 3 twisted vertebrae. I am going in for an EMG test in a couple weeks to check my muscle and nerve function.  I have many other things going on at the moment in which I am seeing a rheumy doc on Monday for.  But my pm doc said that sometimes they just don't know what causes these types of pain.  I know that these pains are not in my head.  It's just not my back that is a mess but my neck too.  I was half heartedly diagnosed with fibro a couple years ago but I just don't fit in to that diagnoses.  I think they diagnosed me with that because they had no other answers.  What do you do if no doctor can pinpoint the cause of your pain???  Do you suffer silently or do you presue the matter until you end up knowing each doctor on a first name basis?! :)  Who knows, maybe the rheumy doc can give me some answers soon but I was sort of thinking about this lately - the what if's.

Posted 4/3/2008 4:29 PM (GMT 0)
Hi, Red,
Please don't feel guilty about posting here because your symtoms don't seem to be as bad as others. Many of us started out with symptoms that weren't this bad, and progressed over the years. So I think you're doing the right thing trying to find answers now.

Unfortunately, things can get worse as we age, and if you had some back problems in your teens possibly you have some genetic predisposition? It is difficult sometimes for docs to pinpoint the exact source of our pain, although you've got some things going on that certainly could be contributing - and remember the neck is part of the spine, so not separate from back issues. I would really support you in continuing to ask your doctors for answers, pursuing tests, etc. because some conditions can worsen over time if untreated. And even if the condition itself can't be remedied, the sooner your pain is eased the better. No, it's not in your head - except for the fact the brain is in our head and that's definitely related to chronic pain.

Since you're a moderator you know how to work this board so maybe scan the topics and see if you learn anything that seems to click for you.

By the way, the SI joint can wreak havoc, that I know for sure. Have you ever had Physical therapy? I happen to have finally (after many tries) found a great P.T. who was able to isolated my SI joint problems in addition to my lumbar spine issues. He does a little bit of very gentle chiropractic-like manipulation, a very gentle roll of my SI joint back into place (he knows how to check if it's out and believe me when it's out it creates much more pain). But he also gave me exercises to tighten the ligaments, and then eventually I wore an SI joint belt, which is annoying but you do for 6 weeks when the exercises aren't enough. My SI joint was doing well with just the exercises once/day until I had back surgery last Sept. Then it all went downhill, and I can't yet do the SI joint exercises because they tighten muscle in my back I'm supposed to be relaxing! Catch 22! Oh, well, just a thought that maybe a good physical therapist can help with SOME parts of your symptoms, but sounds like you really need to follow through with tests to help identify everything thats going on.

Anyway, I think the short answer to one of your questions is no, don't suffer in silence, but be prepared for a lot of potholes as you negotiate the road to medical answers and treatment.

Post Edited (PAlady) : 4/3/2008 12:19:30 PM (GMT-6)

Posted 4/3/2008 6:26 PM (GMT 0)
Sometimes I feel just like banging my head on the wall because it's just so frustrating! PAlady, yep - I've been perusing some of the older posts here and I find some that I may be able to relate with and some not. The ones that I can sort of relate to are people that are much more worse off then me though (scary thought actually!). Yes, I've tried P/T, twice and it helped some but I don't think I ever did it for my SI. It was mostly for my neck and upper back. Might be worth a shot to try. Sometimes though it's hard for me to get out of the house but if I can glean some info on how to work the SI from the therapist, maybe I can continue it at home. I've been doing some core excersizes and it seems to be helping a bit but the thing that seems to always hurt no matter what I try is the horrible back spasms. If I do anything that involves bending my back gets all spasmy on me and boy does that hurt!

Bonnie, no I haven't looked up MPS. I've heard of it, I'm just not quite sure what it is. I will look into that.

Thank you for your responses!
Posted 4/4/2008 12:05 AM (GMT 0)
This is probably a dumb question in that they probably answered this when you were a teen ager but are your hips uneven, that can cause the pain on standing the muscle spasms...

The other thing is that your rhuemy should be able to give you better answers. Sometimes they can treat the symptoms while they diagnose you. I will never forget my first rhuemy appointment. It was at a teaching hospital and I was a weird-totally not textbook case-so I had the head of the rhuemotolgy dept as my attending then another rhuemy the head of internal medicine and a bunch of med students and interns all in a room arguing about my diagnosis (kind of a mixed differential-grand rounds). I was twenty five and really sick so this procedure started to really confuse me and scare me a little. I found myself physically hiding behind the head of rhuemotology.
When he noticed I was scared and confused he very calmly said "none of this matters, I know exactly what this is, and you are going to feel better now." I believed him he treated me with a huge dose of NSAIDS and I did feel better almost immediately. It wasn't until a while latter that blood tests started coming up positive for RA.

Hopefully your rhuemy will be just as good and will be able to make you feel better.
Sj
Posted 4/4/2008 11:46 AM (GMT 0)
Aww Twostep, I'm so sorry you are dealing with that sort of pain. I've had eye pain in the past but unlike you, mine were due to infections. But it can sure be debilitating for sure. I agree, don't give up! But boy, it IS frustrating for sure!

Sj, I'm sorry but I had to chuckle a little about your comment that you were hiding behind the doc. I don't know how many times I felt like doing that too! I go to teaching hospitals and I sometimes feel like a bug under a microscope. Boy, I wished I COULD take Nsaids! I can't however because of my Ulcerative Colitis (causes intestinal bleeding). My med options are limited because of my UC too oh and certain allergic reactions to pain meds. As for my hips - not sure. I've never been told my hips are uneven so maybe they aren't?

PAlady - question for ya - you say the SI joint can cause havoc. How high up the back does your sacroiliitis go? Is it only in your hip, tailbone area? Or does it go into your lower lumbar?
Posted 4/4/2008 3:01 PM (GMT 0)
I would suggest that maybe you get a contrast ct or discogram. The contrast ct picked up the spinal stenosis I have, along with other stuff. The discogram might hurt though, for me it was very uncomfortible. Hope you can get some help soon and definitely speak up. Don't let this keep lingering, okay...
Prayer for you
Soft Hugz too........
Posted 4/4/2008 3:03 PM (GMT 0)
I had to add that I feel the same way...that what I have to deal with every day is NOTHING compared to what some of you do...and I was a little embarrassed to say it.  I have seen ALOT of doctors, PT, etc. and no one can say where my pain (sciatica and low back) is coming from.  I think my brain is so wired to it now that there may not be any hope for me...just keep in taking the meds and getting what relief I can.  My life has been disrupted big time and there are days that is a hard truth.  One doctor came out and TOLD me that I would never be out of pain...helpful, right?  I can just see myself sitting in a wheelchair in a nursing home in pain and no one is even giving me my meds!  'Would like to get this settled before it gets to that time in my life.  I read all the posts and thank everyone for their input.

Posted 4/4/2008 3:11 PM (GMT 0)
What's the difference between a contrast ct and a MRI with contrast?
Posted 4/4/2008 7:52 PM (GMT 0)
That's my fear too...of being in a wheelchair one day and not know why! Scary thought *shudder*

I looked up MPS and I don't fit into that since my muscles never hurt that much - it's my joints and nerve pain mostly. If they do, it's mostly just normal stuff.

Thanks everyone. :)
Posted 4/4/2008 8:18 PM (GMT 0)
Red,
I don't think I can answer your question about sacroiliitus (sp?). Maybe there's someone here who has more detailed knowledge of anatomy, but it sounds like you've got so much going on - like many of us do - it's like a puzzle and there always seem to be those frustrating pieces that got lost somewhere! So you have to keep hunting all over for them, and sometimes they're never found. Nerves, our spines, are so complex, and it only takes one 'bad' spot where a nerve is being compressed to cause pain in a bunch of seemingly unrelated areas. For me, the SI joint was one of those areas, but it's still not what's causing my main pain problems. That's still coming from the nerve compression in my lumbar spine which was supposed to be repaired by the 2-level fusion I just had. But looks like I'm another case of "FBSS" (Failed Back Surgery Syndrome). Yes, there's an actual name for it.

Perla - you sure do describe our worst fears, at least mine and I suspect many others. For me it's the combination of pain and poverty, and the dovetail as poverty affects your ability to even access basic health care resources, let alone specialists. So not only do I fear not getting my meds, I fear not being able to afford care. And I also think that I'd prefer to make my own decisions somewhere down the line before being placed in a facility where you lose absolute control. I've never understood before why some people - not everyone mind you, but some - actually choose to stay homeless. They sometimes would say at least they have some control over their lives, that they lose even if they go into a shelter. I live in a cold climate and the street people often won't go into the shelters until it's really life-threatening cold. I think now I get it - about the control thing. Sometimes when you have only a thread left, you've got to hang onto that.
Posted 4/4/2008 8:50 PM (GMT 0)
Hi Red_34

I am a new member (just registered yesterday afternoon after having a few really "dumb" moments with the procedure; hopefully my brain is in gear now). I spent some time reading the threads and responses and I am getting a really good feeling about this place: that it is a place for open, friendly discussion and debate and even philosophy-of-life viewpoint exchanges. All things that I enjoy. I do not want to monopolize your thread so I will maybe post my own topic to introduce myself to the members. What I would like to contribute here is to answer the following questions that you posed in your original post - I do not feel qualified by any personal experience to advise on your back pain but I do have long-time experience with chronic pain (8 years) and pain management clinics ~3 years). In fact, my pain doc basically saved my life - so I have nothing but good things to say about the right pain management clinic / doctor.

Your questions that I wish to address are:

"What do you do if no doctor can pinpoint the cause of your pain??? Do you suffer silently or do you presue the matter until you end up knowing each doctor on a first name basis?! :) "

In my experience with chronic pain, there is a strong possibility that a specific cause cannot always be found. Lots of time a doc can offer hypotheses but to say with any certainty what is exactly causing the pain may be impossible. Even if the disease can be pinpointed, lots of time you will not know "why me" when many others may not experience pain with the exact same disease. However, in my opinion, that doesn't mean the pain should not be treated. In fact, there are some experts that believe chronic pain is a separate disease in and of itself - one that can shorten life and lead to other maladies (I can offer links to these articles if you wish - they used to be available, for free, online. If not I have them downloaded and am willing to send them to anyone who asks me to as long as I am not violating any of this boards rules - some boards do not allow sharing libraries). In no circumstances should a person with chornic pain, pain that is interfering with every day life, suffer silently. Probably the best action is to do any reasonable amounts of diagnostic tests to get to the bottom of things but with the realization that you may never find out the cause. If you get to that step, I believe it is completely appropriate to be treated for a chronic pain condition without knowing the cause.

In my particular case, we had a basis for understanding why I may be experiencing chronic pain (previous emergency abdominal surgery that probably damaged my pancreas leaving me with a type of chronic pancreatitis) but we have never been able to "prove" any damage by radiology, blood tests, etc. Once the GIS and surgeons ruled out any problem that could be solved by their expertise, I was referred to a pain doctor. She basically told me that we probably will never know why I ended up with chronic pain but that it is real and needs to be treated. She worked with me for over three years to find the appropriate long term treatment. Her first goal was to get the unmanaged pain levels down to bearable levels and to do it as quickly as possible. Once we did that we started to tweak the treatment: adding this drug here, then there; doing non-drug therapy; adding onto the narcotic medicines; working with a pain psych to learn about pacing, relaxation, acceptance, etc; and working with Physical Therapists. I am now being seen by my PCP since becoming stable. I will be happy to share with you how I presented my needs, goals and expectations to my pain doc when I first met her.

So what do you do if no doctor can pinpoint the cause of your pain? You do not suffer silently; you demand pain control no matter what. And at that point you will need to realize that you may never know the cause but to get some comfort into knowing you ruled out certain treatment options by pursuing a reasonable diagnostic path. If you are comfortable that you did what you can to find the cause, there is nothing "wrong" with accepting that you may never know why you have chronic pain and then it is vital to find a good pain doc who will help you "learn to endure" (the meaning of my user name) your chronic pain: you learn to live it with by learning all you can about your specific case and your options.

In my journey of chronic pain I am at the philosophical stage......but I believe that there are many stages to this and not all of us will be in the same stage nor do the stages always follow a straight line of progression (some times we take a few steps back to go forwards) nor do we all enter the same stages. My personal beliefs are that livinig with chronic pain has similar stages as the seven stages described when it comes to loss: grieving, anger, depression, acceptance, etc. Only modified to include the pursuit of the medical "why, what, where, how" answers.

Hope this makes sense and helps to keep the dialog going!

Thanks for giving me the opportunity to share a bit about myself.

Disce Pati ~ Learn to Endure: knowledge gives you the ability to endure life with chronic pain.
Posted 4/4/2008 10:49 PM (GMT 0)
Hi Red. I am not sure this will be encouraging, but at least I hope it will make you feel less alone in this...

I have had a pain issue for nearly 6 years now which began with a back injury. After the initial injury should have healed, I was left with constant severe pain in my mid back. I feel as though someone has stabbed me in the back - to the point where I'm almost amazed no one can see the knife! But... none of the tests, procedures, or scans they have done have shown any obvious source for the pain. Like you, my symptoms do not fit with Fibromyalgia or apparently any other of the chronic pain diseases doctors (at least my doctors) are aware of.

I am discouraged by the lack of answers more and more each year, but I remain convinced (I HAVE to) that there IS a solution. Keep your chin up and hang on to that hope. I hope you find help soon and relief for your pain. My memory of what it is like to NOT be in pain is growing more and more faint, but I make a conscious effort to think about those days as often as I can to remind myself that there is a life different than this. That helps me gather the strength to knock on the door of each "next" doctor and continue to hope and pray that this will be the doctor who will find the problem or at the very least, find a way to mediate the pain.

Best of luck to you.
Posted 4/5/2008 12:47 PM (GMT 0)
Thank you for all your kind words. It really means alot to me. I feel sometimes that no one understands what it is like to be in pain 24/7. My hubby is a great man but doesn't understand it - he relates it to just getting older type pains. I feel like I have to put a happy mask on all the time while I'm dying on the inside ya know?

I'm definately no stranger to pain because if it isn't my body that is rebeling on me, it's my colon (Uc is a highly debilitating!). But now that I got my Uc under control and I'm remission with that, I can concentrate on the rest of me. For the longest time I thought the pain that I am experiencing was normal for having Uc because my old PCP told me it was. It wasn't until I found a new PCP that was knowledgable about UC and the extra intestinal manifestations that I realized that NO this is not normal. I LOVE my new PCP to pieces - she is willing to look outside my Uc box and try to get me better. So with a great primary doc by my side, I feel stronger about trying to find a cause of these pains.

The main reason I am seeing a rheumy is because of my latest bloodwork showed a postive ANCA (UC can show a positive ANCA too though) but because I've been experiencing other non-Uc type things. Such as leg weakness, tingling, photo sensitive rashes, cramps in my legs and toes, nerve pain in my neck and shoulder, loss of reflex in my right leg, back spasms. So I am hoping (and praying) that this doctor can give me answers. So cross your fingers for me that when I see him on Monday he will have a light bulb moment and say ah ha! I know how to fix this! :)
Posted 4/5/2008 2:27 PM (GMT 0)
I do not feel so alone now, knowing that you have some of the same fears.  My husband is looking to retire in the next two/three years and that scares me for ALOT of reasons!  Having insurance certainly helps but being on a fixed income will limit our meds, dr. appointments, etc...and already does to some extent.  I feel for every one of you.  Please keep encouraging one another.  I especially appreciate hearing from you who have more medical background...through education or life!!  P.S.  PAlady-I hear you about being homeless.

Posted 4/8/2008 2:39 PM (GMT 0)

Hmph! So much for pinning my hopes on the rheumy doc.  He was pretty much useless and what a total waste of time.  You can view my vent about it here: https://www.healingwell.com/community/default.aspx?f=38&m=1091157

So, now I guess we shall see what the EMG shows up if anything.  I'm getting very frustrated because NO ONE can tell me why my hips and lower back is a mess.  Why if I bend over to do any sort of housework, my lower back tightens up and spasms like crazy, why no one can tell me why I can hardly walk or stand for long periods without having to sit down because my hips hurt, why I feel like I have the body of an 80 year old when I'm only 38!  It's a pity party for me day  sad

Posted 4/15/2008 9:36 AM (GMT 0)
Hi, Red. I was just thinking of you and wondered if you got any answers from your EMG? How are you doing? I understand how frustrated you are. I often think how crazy it is that in this day and age of medical advances they cannot find a way to help us. I read a quote from the book "The Fifth Vital Sign" that said it is just ridiculous that scientists are cloning humans but can't seem to find a way to mitigate severe back pain. How true!

I hope you have found some relief by now. I'm thinking of you.

Ry
Posted 4/15/2008 6:36 PM (GMT 0)
Red, this may sound really stupid.  Since the pain started in your teenage years could it possibly be scoliosis?  It usually develpos in the teen years with your growth spurt.  I know I have a 15 degree curvature that has given me problems since about ninth grade.  I can't imagine, though, with all the testing you have had done, that the docs wouldn't notice this.  I just felt I should mention this.

 

Sherrine

Posted 4/15/2008 8:54 PM (GMT 0)
The frustrating thing is that there are so many possibilities about what can be causing back pain, and pain that radiates to other areas, that for many of us the exact source - or sources - may never be found. Red, it's a process of eliminating as much as possible, but even then sometimes we just have to find good pain management. Even if the cause is identified, there may not be a way to treat it - just ask those of us that went for the big ticket surgery items as our last hopeful resort, only to still be disappointed.

So I understand and emathize with you. It is maddening to have to keep having tests, more doctors, retelling your story over and over....but there's not much choice except to give up. Sometimes taking all your tests and such to a major medical center for a consult may help - some of them have a bunch of specialists look over everything and give their opinions, but even the major centers aren't flawless. I wish I had some magic answer for you. I wonder about Sherrine's point, though; could something that started earlier just be worsening? I had doctors look at my spine and it was one older doc, old fashioned but very good (he retired, darn!) who actually put his hands on my spine and said I had a slight curvature. Right where all my problems were coming from, too. One PM specialist noted it in one report, but in a later report said there was no scoliosis, but sometimes if it's not major they don't pick it up on later reports.

Just know you're not alone in your frustration!
Posted 4/16/2008 4:38 AM (GMT 0)

Red,

I KNOW HOW YOU FEEL. I have had over 9 operations in 20 yrs on my spine My SI on my right was just fused this last Dec. I have so much pain in my back that is " Unusual" to my surgeon,,,which of whom I just fired( see some of my other posts)My father a very sage man, and a doctor of doctors said the back is SOOOOO VERY COMPLEX,that if any surgeon says they have narrowed it down, they are full of it!! He( my dad has never ever lied to me, I believe him) not to mention he is a leading expert in research for medicine in the US on spines... SO, that said I feel your pain I really do, I posted earlier today  re: my surgeon These guys all they know is that " a chance to cut is a chance to cure!" I'm also sorry about the EMG's they hurt had 5. UGH! let it all out! We are here!! stay strong! Peace and prayers

Colerg

Posted 4/17/2008 2:51 PM (GMT 0)
Thanks everyone! I just noticed that my post had more responses so I'm sorry I didn't respond sooner. Obviously I don't come on the chronic pain forum very much - maybe I should because you all are so kind, thoughtful and uplifting!

Well I had my EMG yesterday. And it wasn't tooooo bad - sort of felt like I was getting stung by bees. Except for when he tested my lower back, now that hurt! He had my lie on my stomach and he would put the needle in and would keep telling me to relax so I had to tell him, "Would YOU be able to relax with needles in your back??" lol So he had me lay on my side and did it that way, which was better. So I finally got a diagnosis! Yay! Though I'm not happy with it but I'm glad that I have a name for the pain! Spinal Stenosis. I'm not sure yet what they are going to do to help me yet. I go see my pain doc on May 7th. But when I looked up what Spinal Stenosis was (because I had no clue), I read the symptoms and thought WOW - this is me! So as of now, that is the standing diagnosis even though we don't know what is causing it yet. My MRI's were clean so maybe whatever it is, I'm in the beginning stages.

Sherrine, as far as I know I don't have scoliosis. I've had many doctors look at my spine including physical therapists and other then having 3 twisted vertebrae (my primary and P/t's told me that), they said my spine was straight. I've been contemplating going to a chiropractor except I would have to pay out of pocket since my HMO won't cover that. Do you have an opinion on chiros?
Posted 4/17/2008 2:58 PM (GMT 0)
Oh and as a side question - do you think that maybe the twisted vertebrae that I have has anything to do with the stenosis??? Could having SS be in relation to an auto immune disease??
Posted 4/17/2008 4:25 PM (GMT 0)
Hi, Sherry!  Well, I did a search of spinal stenosis and found this link.

 

http://www.nlm.nih.gov/medlineplus/spinalstenosis.html

 

According to this, scoliosis can cause it, along with age and arthritis.  So, maybe you do have some curvature.

 

 

 I used to go to the chiropractor but I think he was overcorrecting and I was worse when I left.  Then, about the time I'd start to feel better, I had another appointment!  I did this for years!  UGH!  So I stopped going to him.  I started being smart about my back.

First of all, I do not sleep flat on my back because it makes my back hurt more.  I don't sleep on my stomach either.  I sleep on my sides with a pillow wedged behind my back.  This way, I can partially be on my back but have support.  That helps me.  I also get out of bed using a cane.  I roll on my side, draw my legs up in a sitting position so the legs are actually hanging over the floor, and then I push off with the cane.  Gravity will bring your legs down and you will be pulled to a sitting position without using your back muscles.

 

When getting in and out of a car, sit on the seat with your feet on the pavement.  Then, either using the seat or the steering wheel, swivel your feet into the car while keeping your back straight.  I buy cars with leather seats because they are slippery.  But, when I rent a car and get cloth seats I had to come up with another idea...and I did!  I get a garbage bag and a towel.  I lay the garbage bag on the seat and the towel over it.  Then I do the above.  The garbage bag and towel let  your rear end swivel like you were on a lazy susan!  LOL  Just reverse the above to get out of the car.

 

Don't use your back muscles when you are lifting things up.  Use your legs instead.  By doing the above things, my back rarely hurts me now.  I hope these suggestions will help you, too!

Sherrine

 

 

 

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