Needing some guidance and support

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

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 said...
How old are you?

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

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

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

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.

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

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.

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!