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abdpain49yrs
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/6/2012 7:57 PM (GMT -6)   
I'm new on here but I thought it would be worth a try to see if I can find any answers on my own. A little background on myself....I'm 27 years old. I am a first time mother and my daughter is in her "terrible two's" phase! My chronic pain journey started almost 9 years ago now. When the pain first began it was not severe. But as time went on it became worse and worse. The pain took a turn for the worst after I had my daughter 2 years ago. I have complained of lower right sided abdomen pain that wraps around my right side to the right side of my spine. I have had countless procedures done, and many many pictures taken of my body. Everyone is just as baffled today as we were when this all started. I have had my appendix out, gall bladder removed, several colonoscopies, and upper endoscopies. The result has been the same. I have recently started seeing a Pain Management doc. I am very skeptical of doctors these days so I really don't know if I like him yet or not. We are currently trying steriod injections in a couple different locations in my spine. After the 1st injection, I felt like a new person with little to no pain for 3 days and then I was almost worst than before the shots! The 2nd injection he did lower and it hurt a lot worse while he was giving the injection and my pain has not changed since. I have a very hard time understanding why the doctors can't find anything. I was a completely normal person before all this started. I'm very frustrated, overwhelmed, and just barely hanging on by a thread at times. It's hard to get up and face the day when I can barely move at times. I know I have to for my daughter but at my low points it's hard to deal with feeling like a tremendous failure, both as a mother and as a girlfriend. If anyone has ANY thoughts or advice I would GREATLY appreciate it. I just really don't know how much more of this I will be able to take. Thank you in advance!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 4/6/2012 9:42 PM (GMT -6)   
Hi Abdpain and welcome to the chronic pain forum. I am sorry that you are having such a difficult time and all of your drs are coming up with no diagnosis. That is probably one of the hardest things a patient can endure, is to not be well and not know why. I know you have had a complete GI workup, but have you been completely worked up by a gyno? You did not mention this, this is why I am asking.

I do think you are probably where you need to be with a pain mgt dr to try and get the pain under control. Now, there are many different types of injections and blocks done by pain mgt drs, do you know what particular type of injections your PM dr is doing on you? The problem when doing injections on patients, there is no guarantee that the patient will get relief, there is no way of knowing without actually having the procedure done. It can be a real hit or miss type of thing. Everyone reacts so differently so that is just another unknown.

Something you may want to consider is being seen at one of the teaching hospitals. Many times the drs at those hospitals are able to find things our regular drs totally missed or even thought to look for. They generally will do a complete workup at their facility starting from scratch all over again. I have heard they like to do their own testing. If this this is something you might be interested in, you can look at the post at the very top here called CP101, in it is a complete listing of various teaching hospitals across the country. Hopefully there will be one close to where you live.

The main thing is not to give up on getting help. Keep pushing for answers and don't take no for an a final answer. There is nothing wrong with advocating for your own care. Last but not least, many times people that suffer with chronic pain often suffer with depression. For some reason the two seem to go hand in hand. If you feel you are having problems with depression please do yourself a favor and discuss it with your dr. Many of us have to be on medication to help keep it under control. Being depressed is not a sign of weakness either, it takes a very strong person to live with chronic pain.

Please keep us posted on how you are doing. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/6/2012 10:48 PM (GMT -6)   
hello and welcome, Straydog gave you great advice, I cant think of anything to add.  Just keep going until someone finds out whats going on.  In the meantime, this forum is  a great place for you, you will get tons of support and advice.  Just hand in there, we are all here for you.
 
Take care and good luck,
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/6/2012 11:08 PM (GMT -6)   
I know all too well how you feel as a parent in this situation.....my kids are now 6 and 4, and the full-body, severe auto immune disease phase of my illness began in earnest just before my wife became pregnant with our first. So I'm a little further along in the process than you are, with two kids rather than one.....but I'm also a father who has a healthy wife to handle the things that I can't. I can say that in many ways it does get easier as the kids get older because they become more independent, they get more involved in things like school and friends and activities and less dependent on constant parental hovering.....but of course they get bigger and heavier, their needs become more complex as do their personalities, and although they can be wonderfully understanding -- mine even occasionally offer to give me massages! -- they can also be very frustrated and not necessarily always accommodating of what our conditions demand of us.

If you have specific questions I'd be happy to offer whatever advice or experience I can....off the top of my head, late at night in a lot of pain it's hard for me to think of where to start or what to prioritize saying with these arthritic typing fingers......
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Severe Spinal Degeneration (Ankylosing Spondylitis, Pars Defect, Neural Foraminal Stenosis, 6mm gap@L5-S1, disc issues, etc), Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, Epididymitis, Prostatitis, Multiple Organ Issues, Unknown MS-Like Neuropathy, digestive issues, and a partridge in a pear tree.

abdpain49yrs
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/7/2012 7:26 AM (GMT -6)   
For some reason I posted a reply last night but it didn't show up today. So forgive me if this is repetitive.

To answer some of the questions... I have seen a gyno doc (several actually). All have said there is a strong possibility that I have endometriosis but the only way of knowing that for sure is to have an exploratory surgery. After discussing it with my family we all thought that for my age I have had enough surgeries and didn't think it was worth it. My family doctor and I have since put a stop to my periods with birth control, which definately helps some since the pain is ALWAYS worse during my periods. Myself and my doctor both agree that my female organs are not the cause of the pain though. The pain is worse because my body is already dealing with so much that even the slightest headache or anything else seems unbearable.

I have had a full work up from the GI docs. All of them always seem to come back to the same conclusion..."you must have irritable bowel syndrome and that is what is causing all of your pain!" Although I do believe I have some symptoms which are consistant with IBS none of the IBS medications do anything for me. I believe that all the medications that I'm on the for the pain is messing with my digestive tract. Although, I'm not a doctor...I do know my body and I do have a medical background. So I feel like I know a little about what's going on.

So far to date everything that they have found has been located on the right side of my body. I have a Tarlov cyst on the right side of my sacrum. My right kidney continuously produces stones, some of which pass with little to no pain and others are very painful. I have had H pylori stomach ulcers which have been taken care of. I seem to be the one in our family that gets sick with a cold or the flu more frequently. I have had liver functioning tests, been tested for Celiac disease, and have had tests done to check for deep varicose veins. All of my tests seem to come back normal.

To answer your question about depression...yes I am most definately depressed. It's hard to not be when you don't feel good most of the time. I feel like life is passing me by while I'm laying around on the couch. There are so many things that I would like to be doing with my daughter, boyfriend, and friends but I know physically I just can't. As of now, I am not taking anything for depression. I guess I feel like I'm taking enough drugs and I need to just learn to self-soothe.

I will definately look into teaching hospitals close by. I thank you so much for the words of encouragement and all the advice. I really do appreciate it. It is nice to know I'm not alone because I have felt that way. :)

abdpain49yrs
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/7/2012 7:37 AM (GMT -6)   
Pertaining to the injections in my back: I'm not really sure of the difference between a pain block and an epidural. I know that the injections they gave contained a pain reliever and a steriod. The first injection they gave me between T10-T11 and I had LITTLE TO NO pain at all for three days....then BAM the pain was back and worse than ever! The next injection they gave me was a lot lower in the facet joint between L5-S1 and this shot didn't seem to do anything for my pain at all. I haven't been back to the pain management doctor since the second injection. I guess I'm just frustrated.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 4/7/2012 9:29 AM (GMT -6)   
Well, I know what you said about surgery and all but if there is a remote chance of having endometriosis, having a laproscopy surgery done can rule that out. That is one disease that can be absolutely wicked for some ladies, to the point of being disabling-so you may want to do some more research there. It is unbelievable the problems that disease can cause when it spreads and wraps around organs. No female should ever have to go through that agny.

Yes, you are far too young to be laying around on a couch all day because of pain. People with pain have to keep moving. Frustration is something we all go through when dealing with drs and chronic pain. I hope you can find a teaching hospital close to where you live because that may be your best resource. Just know you are not alone and come here and talk it out, don't keep things bottled up. Take care......Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

abdpain49yrs
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/7/2012 9:36 AM (GMT -6)   
Thank you straydog. You have great advice. I do appreciate it very much too! I does help sometimes just knowing I'm not alone in this. After hearing from more than a few doctors that it's just in my head, or I'm manic depressive, or that they have run all these tests and can't find anything so I must just be out to get pain meds....I start believing that maybe they're right, maybe I'm just losing my mind. But then the pain starts again and there is NO DENYING that there is definately something going on and it's NOT in my head! :) Thanks again.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 4/7/2012 10:32 AM (GMT -6)   
Dear abdpain,
It would seem that the pain doc might have a handle on the pain, since the T10-11 injection did work for a while. I have slipping ribs (disconnected) on the right, and intercostal injections at 9,10, and 11 numb the nerves to the ribs and stop the pain for a few months.

My rib pain seemed like liver or gallbladder or abdominal problems after the wreck that broke them. I had several CTs and X-rays that showed the cortical breaks. It's fairly common for people to get "costochrondritis" or other pain from the area where the ribs are connected to each other in front of the abdomen and chest. It's hard to figure out exactly where the pain is coming from. I had 3 gallbladder tests, all negative.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 4/7/2012 12:17 PM (GMT -6)   
Abdpain, please do not let a dr tell you this pain is all in your head and don't let that rule any decision making towards seeking other medical care either. When I first started having severe neck and back pain, I went down the road of thinking it was all in my head too. No dr had told me that, it was just my way of thinking and I was also in some denial too. Once the MRI Scans were done and we saw the problems in both areas it was a great relief to know something really was wrong. Yes, that sounds crazy, but I nearly drove myself crazy thinking I was becoming a hypochondriac too. I finally told my dr after having the tests done that I had really doubted myself.


I do hope you will go back and see the PM dr and let him know the first injection did give some temporary relief. Keep us posted.....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

abdpain49yrs
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 4/7/2012 11:35 PM (GMT -6)   
Straydog...thanks! I keep telling myself it's not in my head. When you hear snide comments though it's hard to not think about. But I do know that something is going on. I may not have my answer as to what yet but hopefully soon we will have some answers. I go back to the PM doc in a couple weeks and I'll be sure to tell him that the 1st injection was waaaay better than the second. We will see where we go from here. I'm sure he is a good, caring doctor. We are just beginning to get to know each other and just barely scraping the surface of what is going on with me. I'm just worried he will do what so many other doctors have done to me... say "I don't think there is anything I can do to help you, sorry!" I have heard those words far too often!

My problem is I need to learn how to be strong and stand up for myself and not take no for an answer. Too many times when someone gives up on me I lose all my strength and want to give up myself. I can't be that way or I will never solve this problem!

In my low moments I do think this website will help lift me up and inspire me. *Positive thinking*

I think I will also start a journal about my pain and jot things down everyday about what my symptoms were that day, whether good or bad. Maybe then someone will take me a little more seriously! :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 4/8/2012 1:54 AM (GMT -6)   
A pain journal is an excellent idea and this has been done by several members. Take this with you to the next appt with the PM dr and show it to him. It will give him a good idea about your pain and show him that you are serious about needing help. I am thinking in CP101 at the top of this page there is a pain journal that can be copied.

It is real easy to doubt yourself especially when drs cop that attitude of I cannot find anything wrong with you so there is nothing wrong with you. But we know our bodies better than anyone and know when something is not right.

It is hard when seeing a new dr but hang in there and try to give the new dr a chance. It will be interesting to see what he thinks after he hears what happened after the injections.

Keep at it and you will get some answers. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum
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