Please please PLEASE give me some help/ideas

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MisterJ
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/10/2011 2:21 AM (GMT -7)   
For the past 5-6 months i have been dealing with mysterious nonstop chronic pain, it effects almost my entire back and neck/shoulders. It literally starts from when i wake up until i go to bed, its so draining just to make it through the day im only 21 yo male and im miserable EVERYDAY i cannot do anything i cannot work, i had to move home with my parents, Im so drained and emotionally done with this i have genuinely considered ending it all. But i dont think i can because i know it would destroy my parents. I have been to numerous doctors and they cannot find a cause, i have had blood tests, bone scans, Nerve conductive tests, Xrays, All nothing much has come from anything. I cannot sit for longer than 10-15 minutes because my back feels like its going to just die and fall off my body it just feels like its dead and my neck and shoulders and along my spine will just burn with nonstop excruciating pain. It feels as if its never going to end, i have tried so many meds and nothing works, i have tried Naproxen, Vallium, Oxycontin, Flexerix, Lyrica, Seroquel, Prednisone, Robaxin 750. And all have not really helped at all the Oxycontin helped at first some but after about a month it just stopped working now im on 5mg Percocet 5 times a day and 5mg Vallium 4x a day. And it helped once again a little bit it took the pain away about 50% for about a month but now the pain is back just like it started. Im giving up i dont know what to do next i have a drs appoint sched'd for Tues what should i do or say to try to figure out whats going on. My Dr flat out told me he has no idea what is going on and im a mystery and doesnt know what else to do. So im very close to the edge at the moment because i see no end in sight, Please does anyone have any ideas on what could be the problem? PLEASE,

THANK YOU

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 3678
   Posted 2/10/2011 7:51 AM (GMT -7)   
Wow, that's a lot of pain meds! I hope you are seeing a good pain clinic doc.
"blood tests, bone scans, Nerve conductive tests, Xrays" - Have they done MRI? That would show any spine problem the best.
Alcie
 
 

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 2/10/2011 10:53 AM (GMT -7)   

 

  

   Dear Mr. J,

   Good morning :-) My name is Dani. It is very nice to meet you. The Healing Well Community is a great place for friendship, support and knowledge. We are always glad to welcome newcomers.    

   I am terribly sorry to hear of all your trouble with regards to pain. Even though many of have diagnosis (some, like myself, have evidence of serious problems but no diagnosis "Idiopathic") our pain medications and therapies only "take the edge" off. In other words, we will never be pain free. Of course the goal is to get the pain down as much as possible... often times it is just attempts to restore quality to life.

    You know I just gave these first two suggestions to another person this morning, but I think they are suggestions that you might benefit from as well. Have you given throught to going to a teaching hospital? Often times, they are a long drive from home... but worth the extra 2 even 3 hours drive to get answers. I still have to drive 2 hours to see one of my doctors. Thankfully, the others have opened up wellness centers here in my small town. They have 2 to 3 days that they are at the small center.

This might help...

~~>  http://en.wikipedia.org/wiki/List_of_university_hospitals

~~>  http://www.mayoclinic.com/

   When I first began to have pain I had a hard time understanding that my doctors couldn't "fix" it. I was young and very angry. I had reached a point in my life where I finally had everything I ever dared to dream of. Everything was so wonderful and I had waited for and wished for it my whole life. I still have a wonderful life... the only difference is that I just happen to be sick.

    My doctors, all those specialists...  They didn't have answers, they couldn't control the pain, they all kept saying they are trying hard to find answers... Finally at one point I was told flat out that I would be "Likely be in pain the rest of your life.". That they were "sorry". That they were unsure "what" was causing my progressive deformities and that "we may never know what is causing it.". They would monitor me closely and try to keep the pain down as much as possible. So.. my first stop was the pain psychologist. These are mental health professionals that help patients with chronic and terminal illness. She quite literally helped me to rebuild who I was and my life. It might be something for you to check into. Lets face it. We are not going to be pain free. We are not going to get who we were back. So, instead redefine who you are with chronic pain as a part of who you are.

    I hope more than anything that you are able to find the answers that you need. Again, it was very nice to meet you. Hang in there and stay strong!

:-)  
  dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Testosterone
Regular Member


Date Joined Jan 2011
Total Posts : 52
   Posted 2/10/2011 1:23 PM (GMT -7)   
Just hold on dude. You're not much younger than me. I'm 25 and last year I fell 12 feet into a concrete floor. I ended up paralyzed for a week and have been in debilitating pain ever since. On top of that I have to deal with a sick sadist adjuster who completely disregards doctors findings, denying me necessary medication and testing regularly because he truly gets pleasure in causing the suffering of others. I've been on different medication than what was working for me (20 mg opana every 6 hours) because he claims there isn't a causal relation between my injury and the necessity for pain medicine. Since I was prescribed opana for a fracture that I had pinned together when I was 23, he claims that proves that the pain medicine isn't for my back. On top of that he's forced me out of pain management practices by denying payment then claims I'm dr shopping when he forces me to find new practices to deal with.
At least you have everyone working FOR you trying to find out what's happening with you. Don't stop holding on.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2203
   Posted 2/10/2011 1:45 PM (GMT -7)   
J-
Sadly, your story is all too common for those of us who first experienced CP at a young age. Doctors don't usually know what's going on. In my case, I had an abnormal MRI, but they assumed that couldn't possibly be causing my probs, so they told me it was normal & proceeded through the meds until finally I saw a different doc in the hospital & she asked why I wasn't having surgery. I hadn't known that was an option.

I don't have too much to suggest except to hang in there & if you'd like to post what state you're in, our members sometimes can tell you what doctor they're seeing in the area.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11656
   Posted 2/10/2011 2:01 PM (GMT -7)   
Hi MisterJ and welcome to Healing Well's chronic pain forum. I am glad that you found us but sorry that you have to be here. I really do not have much to add to what has already been said by the others. You have been given some excellent information. I too would say my next dr visit would be getting an appt with one of the teaching hospitals that is located the closest to your home. Since everyone is saying they don't what the problem is then not much will come from them in terms of care. At the teaching hospitals they look to find answers and don't just blow a patient off. The fact that you are young is something the medical community has a problem with, they seems to think because people are young they should never suffer with pain. Pain does not have an age limit as far as I know. I would be getting copies of all of my medical records and copies of the films of the xray reports and take them with you to the appt. I know life seems bleak for you right now, but you are just beginning. Hang in there and by all means come here to us at the forum, we will lend an ear any time its needed.

Take care.
Moderator Chronic Pain Forum

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 629
   Posted 2/11/2011 12:22 PM (GMT -7)   
hold on dude, just like the 25 yr. old dude i,m 32 and live in pain and i know why. i know not being able to put your finger on it has got to be stressful and in turn that makes the pre-exsisting pain worse. i was 23 when i was in a boating accident that hurt my spine and then i was thrown into this medical system that has one major problem in that it discriminates against chronic intractable pain sufferers especially if you a young person. one thing i have learned to be the truth is like any other profession, in medicine not all that practice it are good and very few are real good which is what i needed at the time and you need now. first make sure your symptoms and pain are under control and try to educate yourself on what is going on and then start seeking out the best doctors; in your area preferably; that are the best in their specialties and sub-specialties. if you have been to neurosurgeons and orthopedic surgeons and been told nothing is "obviously" wrong with your spine and structural areas, then it's time to seek out a neurologist or rheumatologist who more specializes in diagnosing more abstract pain conditions and if you have already been to one go to another, you never know if some doctors have ever seen some conditions in their whole career. and even if you have a life-long chronic pain syndrome it can be controlled or managed if thats a better term so you can have a realtively normal life. now is not time to give up but time to get agressively mean with it and not let it overcome you or define you and with Gods help conquer it.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2203
   Posted 2/11/2011 4:46 PM (GMT -7)   
MrJ-
Had a couple of other thoughts today...
1) Have any of your doctors run a blood serum test? That might shed some light on why the meds stop working so quickly.
2) Has anyone talked to you about controlled-release meds? CR meds plus an occasional short-acting "breakthrough" med like Valium or Percocet can sometimes help.
3) Have you been hospitalized? Knocking the pain completely out of the system & then trying to keep it at a moderate level works for some. It's a theory that not all doctors subscribe to, but sometimes it seems to help.
4) Maybe check on the ACPA Guide to Pain Medication & Treatment at www.theacpa.org/16/ConsumerGuidetoPainMedicationsTreatment.aspx. It is a lengthy publication written in plain English that reviews the many types of treatments and medications recognized for the treatment of Chronic Pain. Be encouraged -- there are dozens of options out there & one or more of them is bound to work for you eventually, even if they can't figure out exactly what's causing the pain.

hth,
frances

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 629
   Posted 2/12/2011 12:06 PM (GMT -7)   
hey man, your situation brings up such identical memories it's striking. you actually mentioned two symptoms: you can only sit for 10-15min. before lighting up; this can be indicate 1 or more disc bulges impinging a nerve root or the spinal cord. when you sit your disc's get squashed in a bad way unless you have incredibly good posture. i had this symptom in a big way before my lumbar laminectomy when i was 23. if driving and hiting a bump makes it flare or shoot that could be a disc bulge. your other symptom you mentioned is you have a burning pain in your neck, shoulders and along your whole spinal column. this is more of a neurological " syndrome" type thing or a inflammatory condition like ankylosing spondilitis which you should check out on wikipedia or webMD and see if it describes things. this burning could also be fibromyalgia or polymyalgia rheumatica, which are both auto-immune disorders and would fall under rheumatology. have you had lumbar spine and cervical spine MRI's? sometimes things will not even show on MRI or CT scan but a diagnosis can be made by presentation of symptoms and reaction to treatments. my first orthopedic surgeon who has recently passed away told me he had patients with clean MRI's but he operated anyway due to severity of pain or other neurological deficits and when he got them opened up he would find multiple disc bulges and bad facet joint arthrosis which is basically wearing down or arthritic spinal joints, the pain from this is called facet arthropathy which kind of fits your symptom's also. last of all don't let anyone be judgemental of you for using opiates for REAL pain, they would do the same thing, i have seen it happen now that i'm getting a couple years of chronic pain. i know this is a b**** but you have work to do; you need to find out the best: neurosurgeon, ortho, rheumatologist, pain mang., ect. in your area, i will help if you tell me your state. don't stop moving if you can help it because thats when things get worse, walking is great. i'm rooting for you so don't give in. NICK

stingray
Regular Member


Date Joined Oct 2009
Total Posts : 174
   Posted 2/12/2011 1:22 PM (GMT -7)   
Hi Mister J

Sorry to hear about your situation. Not much I can add to what everyone else has said except maybe try a chiropractor or spinal decompression therapy or accupunture or massage. One other thing I want to mention and don't want to scare you but it's worth checking out is. A friend of mine was complaining of back pain and it turned out to be testicular cancer. Which is very treatable now a days and effects guys in their 20's. Just a thought but worth elimanating for the list. Good luck and keep us posted on your progess.
Hang in there.

.Stringray
Chronic Back Pain, Anxiety, A little Depression
Meds: Oxycodone, Oxycontin, Clonazapam

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8445
   Posted 2/12/2011 9:38 PM (GMT -7)   
I'm so very sorry your in this situation, there are other test that can be done,
like mri's with and without contrast, would be a good starting point to ask your doctor about.
and request a copy of the mri, the doctor might not be telling you anything, yet there
might be things showing up...Good luck with your doctor's appointment this week.
Keep us posted as to how things go.
((((((((((((((((((((((((((((((((((((((Mister J ))))))))))))))))))))))))))))))))))))))))))))))))))))))
well wishes and healing hugz
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/12/2011 9:45 PM (GMT -7)   
Hi MisterJ!

Looks like you have a long line of new friends building here. Welcome! I agree with getting yourself to a teaching/university hospital. When the doctors in your area are stumped these places will get down to what's happening. The teaching hospitals are where much of the medical research is done in the US. They won't tell you they can't do anything and push you out the door. They won't give up.

Also, there are pain psychologists. I know, it might sound silly but many members here have found life altering relief by having someone to talk to who understands. They often can be a liaison between and your medical teem also.

Ask the doctor you are going to on Tuesday for some references to a psychologist and also if he has any suggestions for the nearest university/teaching hospital. I think you'll find that you do have hope!

Hugs,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.

"Gravitation is not responsible for people falling in love." Albert Einstein
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