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Any ideas on what to do for pain!?!?

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Posted 1/2/2006 9:34 AM (GMT 0)

Hi all... First I want to introduce myself... Im Jay, 18 year old female, ive been posting on the chronic pain and fibro forums for a few months now. But I had never been in here. Then I stopped by briefly and realized that you guys might be able to help with what I have.

I warn you its a long story but It'll help you understand where Im comng from. Here goes:

about 2 years ago I was in a very bad car accident. Luckily I was wearing a seat belt otherwise I wouldve been thrown out of the car seeing as to how the windshield and windows all broke as we spun. Anyway, the seat belt might have saved my life but it was also what ended up hurting me. From the impact, the seat belts locked and basically crushed in my sternum and ribs on the right side. (I was in the passenger seat so my selt belt went from right shoulder down to left hip) I ended up with chronic costochondritis from all the damage done. Which means chronic inflammation of cartilage and ligaments between the ribs which attaches them to the sternum. So, I am in constant pain from that. Ive been through months of physical therapy, ultrasound treatments, very painful steroid injection directly into the intercostal spaces, etc... Nothing has helped so far. Im lost and have no idea what to do next for this. Any ideas?

But wait, im not done yet..

In August I went in for my routine check up with the doctor and he ran the routine blood work but ended up calling me saying I needed to get rechecked because my labs werent normal. To make the long story short, he sent me to a hematologist (blood doctor) and I had to have a bone marrow biopsy in order to figure out what was going on and to rule out leukemia. Well, in the process of doing the biopsy the doctor accidently hit a nerve which has caused a whole other array of problems.

As the bodies natural way to 'protect' the damaged nerve, it tenses and tightens up the muscles around it which ended up putting pressure on my sciatic nerve and pinching it too. So basically I have a pinched nerve in my hip, my sciatic nerve is pinched, and all this is causing severe shooting pain down my leg along with very bad spasms and cramps. I am on muscle relaxants and pain killers but they arent really helping much either. And Ive talked to several doctors and they all say that becasue of the way the nerve was damaged with direct trauma from being cut into with the needle that it will never heal, meaning I will have chronic low back and hip pain also.

And I got my test results back and I dont have any active leukemia right now, but I do have a blood disorder that will most likely turn into acute leukemia at some point so I have to keep getting checked every other month. Bad thing is that because of this disorder I am also tired all the time.

Ive just about had it. Ive been trying to keep this 'happy face' through it all. But its just not working. Im trying to take one day at a time but being in constant pain and feeling tired and sick is just killing me.

I have talked to doctor. Im still taking meds. Back pain is still very bad. It is still shooting down my legs. Im still getting the spasms and cramps in my back/legs.

Im just miserable all the time. I have no energy and the pain is so bad that I just cant seem to do much.

This is really frustrating for me.
Ive gone from being a happy active person to someone that cant do much without ending in up in bed and in tears from pain.

Im sorry I feel like Im bringing you all down..I just need to vent. No one in my family will listen. They are too deep in denial. Its so hard to deal with this.

I dont know what to do. I feel lost in a world that offers no relief. If you have ANY suggestions for ANY of my problems I would really really appreciate it. Thanks in advance!

Jay
Posted 1/2/2006 2:31 PM (GMT 0)
Hey Jay-L, you have a lot on your plate at such a young age. I'm so sorry to hear all of this. I unfortunately can't help you out with the stuff you are going through. I can offer you a big welcome to the Arthritis Forum and I can offer you all my support and ear when you need to vent. There are lots of people here that are going through a lot of similar things as yourself and I'm sure they will be a long here shortly to add their welcome and 2 cents. Take care and hang in there, you can do it. I have faith in you! It is hard for our families to understand what we go through on a daily basis, especially when we used to be so young and vibrant. Come here and let it all out, that's what we're here for. Best of luck to you, and I hope you decide to keep posting with us also! Gentle Hugs - Duck
Posted 1/3/2006 12:50 AM (GMT 0)
Jay, have you tried any of the meds normally prescribed for nerve pain like Neurontin, Cymbalta or Lyrica? Did they help?
Posted 1/3/2006 5:24 PM (GMT 0)
Dear Jay,

what a mess huh?  it's awful, terrible and very very discouraging to have to be like this, i know.  we've a lot in common.  that car wreck you were in is a truly traumatic thing to go through, and i am so sorry it had to be you.

you seem not very happy with the pain management you are receiving.  do you see a pain management specialist?

are you on narcotic medication?  there are extended release pain meds that you can take along with extra pain meds for "breakthrough" pain. like Ides had said, it's important to try the drugs to reduce nerve pain like Neurontin etc....  a muscle relaxer is important as well.  Valium (diazepam) has been the ONLY drug that controls the horrific back spasms (caused from ankylosing spondylitis) and also major focal seizures i get in my limbs.  phenobarbitol can also be used for spams and back/nerve pain.

the costo i deal with is a horror i'm sure you can relate.  hurts to even breath/talk/bend...anything.  i have found that if i put like 3 LidoDerm patches on my chest....it makes the chest wall/sternum numb and decreases the pain.  you need a Rx for LidoDerm patches.  they contain Lidocain.  they're expensive, insurance helps a little...BUT ASK FOR SAMPLES from your doc!!!  they have them...BOXES OF THEM!!! i'm tellin' ya!!  they hoard them though.  LOL.  pharmaceutical reps are always dropping off patches especially @ neurologists offices and pain docs and regular PCPs.

a consult with a neurologist may be helpful to you as well.

also, there are pain pumps that are implanted that deliver round the clock relief!!  Susie (straydog) i believe has one....hope she sees this post and can help you out!!

ummmm....oh, nerve blocks are also an option. or epidurals too.

there is also another surgery, i think Jerry Lewis has one!.... but it's an implant and when you get real bad pain (or even for the heck of it!) you press this little button and it sends sorta like an impulse/vibration thingy that stops the pain!! very interesting.

that stinks what they did to you with the needle.  i had a spinal tap that went bad myself....AGONY.  i leaked spinal fluid for a month!!!  and the pain made ya wanna die.

i'm in nursing and study a lot in the field of rheumatics and paliative care.

it might be a pain in the a** to finally get better treatment, but keep being persistant.  pain management is a real science and you do need and will get better relief, just a matter of finding the right doc.

so many doctors delay and put off proper pain management due to law suits and fear of getting in trouble with the FDA for writing too many scripts...WHICH RUINS IT FOR US!  THE PEOPLE WHO REALLY NEED PROPER MEDICINE.  and then we get so bad in pain that off to the ER we go....and for what? our docs don't give us the right meds to prevent bad pain situations.

even many anti-depressants help chronic nerve and arthritic and muscle pain.  definitely like Ides mentioned...those nerve meds can help.  if one med fails you...go through the whole ladder of them, some work better than others.  steroids are another option for acute nerve inflammation, but you've probably been down that road too.

please, write back soon.  i too feel like people i live with really don't even begin to understand how bad this really is.  and the "happy face" act is not only exhausting, it's hard to keep up with too.

email me any time (i'm kinda home a lot! LOL...in fact, cryin' in bed last night myself) @ [email protected]

sincerely,

erin  

Post Edited (erin kachmar) : 1/3/2006 10:29:35 AM (GMT-7)

Posted 1/5/2006 6:31 PM (GMT 0)

Hey Jay,

How are you doing?  Straydog posted about some pain meds and I hope you got to read about the pump implant.

I'm in a mess with pain management rightnow myself.  Terrible isn't it?

Just wondering how you're making out with things.

Take care.   Erin

Posted 1/6/2006 5:31 AM (GMT 0)

Hi Jay,

I'm so sorry to hear what you are going through. You are too young to have to deal with any of this. My sister had a procedure done where the doc slipped and cut a nerve as well. To make matters worse, she complained of pain for almost 2 years before the doc ADMITTED what happened during the surgery.

You're not bringing us down - we are here for each other for that very reason. Our family and friends are either in denial, don't understand, or are just plain sick of listening to us. No one can understand constant pain and issues unless you've been through them.

Erin mentioned pain management and anti-depressants. I went from "always smiling" to "couldn't hold back the tears" over the course of 18 months when I was fighting agonizing and debilitating foot pain and doctors were turning me away with no help. The pain just got the best of me after a while. Finally, my PCP at the time, concerned for my well being discussed depression with me and how medication could help with pain management. Between Paxil (anti depressant also used for pain management) and Flexaril (muscle relaxant) I was finally able to get some relief. Round the clock pain becomes all to self-consuming and is all that you can think of because you are just trying to get through each hour let alone each day - it is going to get you down.

I'm sorry I don't have much for suggestions, just an ear mainly. However, did you say you have physical therapy? If not, would that help at all? Also, would possibly B vitamins help the fatiuge? Folic acid? speak with your doctor about it. I know my doc was having me down the folic acid for a long time to help boost up my energy. She was discussing b-vitamin shots to help me out as well. I THINK they have a blood test to see if you are deficient in it.

Good luck. Gentle hugs to you.

**

Posted 1/6/2006 7:20 AM (GMT 0)

Camama you're the best.  It is a shame to be ill so young.  You too right?  Started as a teen?  Me too.  People were always like..."No way you're too young..." blah blah blah.

We're here for ya Jay.  Unfortunatley disease is an equal opportunity employer.  Wish it wasn't.  But perhaps we'll all live to be 200 years old and be fit as a fiddle.  Ya never know!

:-)
Posted 1/6/2006 4:24 PM (GMT 0)
I was diagnosed with JRA at 11, but that was after many years of doctors and testing before someone suggested I get tested for arthritis. I had severe swelling of the knees and a lot of leg pain as well as psorisis (which went untreated for years.) I was sick all the time as well.

At 25 is when I dealt with the debilitating foot issues, and now I'm 35 with a slew of health issues caused by psoriatic arthritis.  I had rubella as a child and I feel that is probably why I came down with RA. Apparently women tend to get RA if they had Rubella (German Measles.)

Interesting note (theory I have) when I was 25, I did not realize German Measles was the same as Rubella. During a physcial, my PCP suggested that I get the MMR booster (measles, mumps, rubella) - it was less than 6 weeks later I slowly started having problems with my feet and joint issues.  Coincidence? Possibly, but I don't think so. It was after the fact that I read you shouldn't get the rubella booster if you've had it.

That's my conspiracy theory to my health and I'm sticking to it.

tongue  **

Posted 1/9/2006 8:23 AM (GMT 0)
Hello... sorry i hadnt responded to your replies. Ive been a little 'disconected' for the past few days.

But thank you so so much for all your caring kind and thoughtful words. I appreciate it more than I can say.

I am not really doing better. If anything feeling worse, especially from the costo. I went to an osteopathic doctor per the referal of the specialist I was seeing, and he took more xrays and examined me. Turns out my ribs are worse than they thought. They are totally misalligned from the spine and sternum. So he did some massage therapy and then he did a manual adjustement to get try and get them back where they belong. Let me tell you, THAT HURT! He explained that since the accident was almost two years ago, these ribs have had all this time to 'heal' in the wrong place. Therfore theres alot of scar tissue. And by manipulating them back to where they belong all this scar tissue is being torn all over again. Anyway, he says that there really isnt much that can be done for the costo pain because those ligaments and cartilage are already broken and damaged. So basically its a chronic issue. Its always going to hurt and I just have to get used to it. But at least by getting them back into their proper position, it wont mess up my upper back(lower back is messed up enough as it is) So I guess its worth the pain if it will help a little in the long run.

Either way, Ive been in ALOT of pain for the past few days. It just seems like everything has come together. The costo, the back and hip pain, everythin!...

I will talk to my doc about trying the neurontin. Ive heard alot of good things baout it and hopefully it will help a little. I just know I cant go on this way. I just cant.

Thanks sooo much for letting me continue to vent and for being so understnading.

I cant thank you enough for being here for me.

Much Luv!

Jay

Posted 1/10/2006 3:01 AM (GMT 0)

hey Jay,

would you consider palliative care? round the clock pain management? are you on any opioid pain meds at all??

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