Needing some guidance and support

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ahuffman
New Member


Date Joined Aug 2009
Total Posts : 19
   Posted 8/12/2009 1:26 PM (GMT -7)   
Hello all,
 
I just stumbled upon this site on Monday and I am very glad that I did. I am only 24 but I have moderate to severe chronic pain caused several problems. I have scoliosis, Scheuermann’s disease, Dislocating kneecaps, and degenerative disks in my back among other things. I was put on Vicodin last August to help with the pain, it worked at first but does not help anymore at all. I have had a lot of problems sleeping because of my lower back pain, and finally decided to go back to the spine specialist yesterday. I was hopeful that he could provide some answers and relief for my pain. But instead he left me more depressed and disgusted than ever. He said that I did not need surgery which is good, but he left me speechless when he stated his suggestion to help with my pain was exercise. I told him before that I have been to physical therapy 3 times and it has not done anything. I just put my head in my hands and tried to hold it together, I felt like crying. My mom had to finish the discussion for me. It felt like he was sentencing me to a lifetime of pain, and I know that my pain will only get worse. I went back to my main Orthopedic who prescribed the Vicodin, today and he decided to agree with the specialist. I feel lost and alone. What is even more frustrating is my Dad gets Percocet for his pain which is not nearly as bad as mine. I just don't get it.
 
Thanks for listening and sorry if I rambled on too long. I am just really frustrated right now.
ahuffman

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 8/12/2009 3:06 PM (GMT -7)   
Welcome.

Most if not all of us have been there done that at one point or another. We can all empathize with how you are feeling. Many times I have felt like playing what I call Whack the Quack because of the stupid stuff they say sometimes. Any more I wonder which year of med school these doctors have their compassion surgically removed and which year they have their ability to think on their own removed.

Have you talked to your Primary Care Provider/doctor about the pain you are in. If not give it a try and let them know none of the others are willing to help, and while you are it maybe get a referral or two to some new doctors and a Pain Management clinic/specialist.

I honestly can not count how many times I have heard from MD's that pain does not promote proper healing and effects the quality of life in one breath but in the next say they can't give you anything "stronger" for fear of addiction...yadda...yadda...yadda. Guess they all missed any of 100 studies that show addiction is very low when pain meds are used on people who need them.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 8/12/2009 4:20 PM (GMT -7)   
I'm sorry that you're hurting. It's hard to hear that kind of thing coming from someone who's supposed to be there to help you live better. There often seems to be an age discrimination that happens when talking about pain medications. I've seen it frequently.

You might want to either talk to your doctor about referring you to a pain management dr or to find another doc in general. Something else that may help is to keep a pain journal. It will indicate that you're serious about what it is that you're experiencing, as well as to show what it is that you can/can't do, and to track what it is that does/does not help. I don't have the link handy but I know there are others here that can post that up for you.

And no, that wasn't too long of a ramble. We all need to vent and beat on pillows, rant, and holler at times. And we all here have been through it. Don't let them get the better of you. Just keep focused on the fact that there is help out there, you just may have to do some searching. And don't be afraid to advocate for yourself.

JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 8/12/2009 8:05 PM (GMT -7)   
Hello....I hate to hear about situations like yours.  I have been there....when the specialists say that you "aren't in enough pain" for stronger meds, or "you only have one bulging disc", or your spinal stenosis isn't "that bad".  Whatever.  You need to find a doctor who is willing to treat YOU, not your condition.  What I mean is your doctor's first and formost concern should be making your life as comfortable as it can be if there is nothing they can do to fix the problem.  It makes no sense to say "well, we can't fix you.....and we are not going to treat your symptoms".  That's like telling a diabetic that because there is no cure for diabetes they won't give you anything to help your condition.  I guess because people don't die from pain it's not worth treating.
 
How old are you?  The only reason that I ask is because when all of my problems started, I was 34.  Every doctor that I saw said I was too young to be on pain meds.  I think there is some kind of "rule" amongst doctors that only people over 50 are allowed to be in severe pain. Plus, I looked healthy, which didn't help me any.  I finally showed up at my PCP's office and had a breakdown right there on the exam table about how much pain I was in. Sobbed like a baby!  She has been managing my meds since then (2 years now).
 
Please don't give up!  There are compassionate doctors out there who can help you.  Try your primary care doc...and if he isn't good then try another doc in your practice.  Be honest about how you feel, and how your quality of life is not where it needs to be.  There are meds that can give you at least part of your life back.
 
Jenny B
Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
 
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
 
I am living in the body of an 80 year old......
 


ahuffman
New Member


Date Joined Aug 2009
Total Posts : 19
   Posted 8/12/2009 8:45 PM (GMT -7)   
JennyBHurts said...
How old are you?


I am 24 years old, I will be 25 in October.

anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 8/12/2009 9:11 PM (GMT -7)   
ahuffman, I want to welcome you here to the forum. I am sorry that you are faced with a reason for being here. But I am so glad you found us here. I do think you will enjoy being a part of such a wonderful group of people. You will find hope, understanding,compassion and so much more from such a wonderful loving group of people.

I am sorry you are hurting so much. You may need to see a PM doctor to treat your pain. I do hope you will check into this. There are so many different meds and treatments available. It may take a while to find what will work for you. But it is certainly worth trying. I don't think you'll be sorry you did.

I am glad you posted. Feel free to post as often as you need to. There is something about it that does help. I know it has helped me alot in so many different ways.
Anice

infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 8/12/2009 10:33 PM (GMT -7)   
Hi ahuffman,
You have certainly stumbled upon a great place filled with people that *do* understand how you feel and what you are going through. While I have yet to see 2 people with the exact same symptoms or conditions, we all know what it is like to hurt all the time!

You are certainly quite young to be experiencing what you are, and I do hope that you may find a person in the medical field that is willing to help you. I have seen many other folks say it, but you have the right and honestly obligation to continue to seek other opinions. One just cannot give up or be satisfied with a Dr. that is not helping. On that note, anice is correct that posting here and following up/listening to others is crucial to righting the mental issues that accompany the physical ones.

Hang in there and keep us updated on how you are doing!

N8

ahuffman
New Member


Date Joined Aug 2009
Total Posts : 19
   Posted 8/13/2009 7:50 PM (GMT -7)   
Thanks everyone for all the kind words and ideas. I will definately continue to post and contribute to the community here. It is fantastic to finally connect with others who can actually understand what I am going through. I have been under quite a bit of stress lately, which I am sure is contributing somewhat to my pain. I am going to go ahead and make an appt with my new PCP soon and hopefully she can help me out.

ahuffman

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 8/13/2009 9:21 PM (GMT -7)   
Hi AHuffman:

I wanted to welcome you to the HW family! You will not find a better on-line support group that cares about each other as we do! Even if we haven't experienced the same exact thing you are dealing with, we understand chronic pain and all that comes along with it! And, we are always willing to listen and offer a little advice if we can.

I am sorry for the pain you are having to endure, and for the frustration from dealing with the doctors. I am having a very similar experience with my pain management doctor. I've been his patient for 12 years, and he used to be one of the best PM's going, but a couple of years ago, something changed in him, and he is a completely different doctor, and the changes were obviously not for the better. So, I understand to some degree what you are going through. I am in the process of trying to find a new one, but PM's don't like to take over care of someone that already has a pain pump.

Feel free to rant, rave, whine, cry, or even scream if the need arises!

Lorie

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 8/13/2009 9:58 PM (GMT -7)   
Ahuffman, Welcome to the CP Forum. We are of all ages, sizes, duration of pain, types of pain etc, but we are all here to support one another as we deal with chronic pain and all that goes with it. We can also relate with the discouraging words and remarks from doctors. I would suggest that you have you primary care Dr.(PCP) refer you to a Pain Managemnt Specialist (PMS). Just because your dad is on perc. does not mean that they will work for you. Percs might not even be the right meds for you. His Dr. made a decision for him and you need to find the right dr to make the right decision for you. Many of us have been through numerous drs and a long list of different meds. We would all like the miracle drug that will take all the pain away and return us to the way life used to be but the reality is that we don't find that result. We learn ways of living with the pain and trying to find even small levels of relief. I am glad you found us and keep in touch.

bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 8/14/2009 3:27 AM (GMT -7)   
I too am sorry to hear of your situation. It is a long struggle to get the help that many of us need so desperately. Why is it that your doctor doesn't think that you are a candidate for surgery? I know surgery is something we would all like to avoid but I would get a second opinion and possibly more testing is needed. Has your doctor suggested any other non-invasive treatments such as PT or injections. I know that alot of these procedures don't always help but some get relief from them. I hope you get some answers and help soon.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


ahuffman
New Member


Date Joined Aug 2009
Total Posts : 19
   Posted 8/17/2009 11:44 AM (GMT -7)   
Just to update, I am trying to get an appt with my new pcp but she is booked for now. I do have my biweekly appt with my psychologist tomorrow, I will be sure to discuss this all with him. I agree with you on the percs fatherjohn, I was just venting my frustration with this whole mess. To answer your questions bsjaguar, my doc said that he did not believe that surgery would provide me with pain relief. He could straighten my spine, but he said that that would most likely not do much if anything for the pain, so it would not be worth it. He also did not believe that injections would help, but I will discuss that with my pcp to see what she thinks.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 8/17/2009 1:38 PM (GMT -7)   
ahuffman

Welcome to the Healing Well Chronic Pain Forum, as you can see from the many post, that this is definitely the place to be! I honestly believe you won't find a better bunch of folks anywhere! Your story, unfortunately is all to common, I dare say it would be very rare to find anybody here that hasn't experienced something similar,  with at least one of the Doctors that they have had. So if it is of any comfort, YOU are not ALONE! Among allot of other disc problems, I have a herniated and torn disc at T12, and that was from well over ten years ago! I could not find any Doctor (surgeon) that would even touch me! (and I seen quite a few!) The one surgeon that I highly admired and thoroughly trusted, told me the surgery was very dangerous, (they would have to do an anterior approach "go through the front" and move all the organs to get at my spine) and he did not believe that in the long run I would get that much benefit from it, (because fusing the discs makes it more likely that the disc above and below the fusion will go bad) and that short of fusing my whole spine, (which they would not do!)  that as long as I could walk, and get around, and they could manage my pain, (in at least a somewhat suitable manner) That I would just have to live with it!  And I have!. Oh yes I just about forgot to mention that during that time I had also went to PT and even Aqua therapy, and I flunked out of all of them!   They were just making me worse!!!, and they would tell me "don't come back untill the Doctor fixes you!" It was definitely a "Catch 22 situation" I felt like you, devastated, and helpless,  and in oh so much pain! I could not work, I sat in a recliner all day, and took pain meds!!! My world as I knew it had changed beyond all measure! I was put on short term, and then long term disability, and  I eventually got SSD. I am telling you this so you will know that I  can definitely  empathize with you!.
 
 You are young and especially because of your age they do not like to do that type of surgery on you!. and if they can, they will avoid it at all cost!  If I were you I would go to Physical Therapy, let them do there thing, if it helps? Fine! If it doesn't then you have more documented proof of your condition. But you also need to find a Doctor that will treat you for your pain. The best thing of course is going to a Pain Clinic and having a PMS taking care of you!

Hang in there ahuffman, you are not alone, we are all here to support you!

Again Welcome to our Family!

White Beard


Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 8/17/2009 2:47:58 PM (GMT-6)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/17/2009 2:26 PM (GMT -7)   
I'm enraged that your Doctor's would treat you in this manner, If I could I would send
a typed note that said "Your Fired!" on it to those doctors of yours..
so sorry, it upset me! Get another Pain management doctor, keep looking if you need too, there
are good ones out there, it took me a second try, the doctor I'm with now is good, but my psychologist
knows that if I need someone better who he'd send me to. Psychologist know who the good and bad ones are
as they work with us. I've heard a lot of pro's and con's on surgery and finally one person put it to me
this way "once you start surgery, it'll always be surgery" he'd had a fusion last about 7 years before being
in surgery again...
What's frustrating form me is there are procedures out there that work, and have FDA approval yet insurance calls them
experimental and won't pay for them..anyways sorry about my rambbling on..
I sure hope sincerely that you can get a low pain day soon
lots of soft hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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


ahuffman
New Member


Date Joined Aug 2009
Total Posts : 19
   Posted 8/18/2009 10:02 PM (GMT -7)   
Sigh, I am getting really frustrated now. I still cannot get in to see the doctor and my psychologist who I really trust seems to think that physical therapy is the answer as well. Why do these people not get it? I just don't understand.

ahuffman
New Member


Date Joined Aug 2009
Total Posts : 19
   Posted 8/20/2009 11:48 AM (GMT -7)   
Ugh what a bad day, I feel like cursing all of my so called "professionals" that I am seeing. I wake up with horrible hip pain, I can hardly walk and I have a Microsoft certification test tomorrow to study for. This really sucks, I am not sure how much more of this crap I can take.

ahuffman

Centurion45
Regular Member


Date Joined Jul 2009
Total Posts : 23
   Posted 8/20/2009 12:23 PM (GMT -7)   
Hello - You, at this time, are a couple of years older than when I began my journey with this. I suspected that I had the Stenosis and other issues, from the start.

This is my experience! It hurt like heck too! I began to walk. As much as I could, and when I could not, I did a little more. I found that my muscles were fighting me all of the time, but as time went on, I found that they would loosen a little bit. It was awfully slow and I kept an attitude that I was going to fix myself or break myself. Anger was one emotion that I used to move my body too. I was not nice to be around, but I really tried not to lash out at anyone, I tried to hide my pain from people, and most just thought I was an angry guy. Some though looked past that and realized that I was hurt. I was told by a bunch of Dr's that I should not have anything wrong with me, well the problem was that I kept going home, in the same or worse pain, and anger became my mode of movement. [Not Good!]

I used every OTC med there was looking for something that would help drop the pain. I never found much that ever worked.

But - I did find that after awhile, the pain would drop as my body got use to movement. I had periods were my facets, sciatic, hamstrings and bones would just ache like heck. I kept moving.

I am now 48, I still hurt. And I use narcotics as part of the overall plan to control pain, but I have found that they don't control all of it for me. Just part of the plan or tools in my toolbox.

It was very discouraging for me too when I was your age to look forward with much planning. I felt that life was getting really limited, but I held onto the hope that I would heal myself or find something that would fix me or find some treatment that would make this go away. In the end, I found ways to get by, accept the pain and live with it. In another year, I have my second kid out of school and the house.

I hope your feeling better knowing that others have been were you are.

Today - I know that the first thing that has to happen is a lessening of the pain, and then I can get active again to help keep moving.

Cheers!
25+ Years, Sciatica, Lumbar back pain, Severe Stenosis L3-L4, DDD, Chronic pain - because the acute pain was never treated, Duh!

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