intercostal neuralgia

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badheartdude
Regular Member


Date Joined Sep 2011
Total Posts : 58
   Posted 9/8/2011 12:42 PM (GMT -6)   
I am a 37 yr old male who had a right nephrectomy on 4/1/09. Ever since then I have had debilitating pain in the surgery area ( right flank ) extending up to my right shoulder and down my right hip. I have tried just about everything, lyrics, gabapentin, opiods, lidocaine patches, ketamin creams, nerve block surgery all to no avail. I currently see a pain specialist who has seems to have hit a brick wall with my treatment. he has currently prescribed 30 mg oxycodone 5 x daily, which helps but the side effects are hard to live with. I lost my job due to my health ( I also had 4 heart stent surgeries in the last year, causing me to miss a lot of work ) I have applied for SSDI as I never know how my pain is going to affect me on a daily basis, some days i can barely move! My pain specialist has diagnosed me with intercostal neuralgia from the surgery but cannot do any more invasive surgeries until i am off the blood thinners for my heart because of the bleeding risks. I welcome any suggestions or words of encouragement as I went from a person running 4 miles a day to someone who feels worthless because of my inability to contribute like I used to. Thanks...

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 9/8/2011 2:17 PM (GMT -6)   
Hey BadHeart, welcome to Healing Well's chronic pain forum. While I am glad that you found us, I am very sorry that you have to be here.

First off, please, please don't be so hard on yourself, it is not like you did something that caused all of these problems. It is difficult enough as you know trying to survive the chronic pain, but I assure you, you are not finished and you just need some help in getting yourself back to an acceptable functioning level. Now granted, you may have to lower your standards a little in that area, because we do tend to put standards up there a little higher than they should be. We have a way of expecting more out of ourselves than is possible sometimes.

You are going to learn with CP you go through so many different emotions and feelings about things. It is really a step by step process to get through it and you will. You can learn to do things differently than you use to, thats ok, it is not written stone that it has to be one way only.

I remember when first I became disabled, the first year was the pits and that was pretty much where I stayed. I realized that I needed to get my head back above the water or I was going to drown. Depression had me down in a black hole. I ended up getting put on medication for the depression which helped a lot. Then at my PCP's recommendation, I found a psychologist to go to that helped me sort this mess out.

One of the first emotions we usually feel is the loss of everything, our jobs, financial hardship, self worth and loss of friends are just some of the things that hit hard and fast. Through the help of my psychologist I learned I was actually grieving for the loss all of these things and of course many other things I felt that I had lost. With her help I learned it was ok to grieve for these things, but I also learned life was not over.

Acceptance is the hardest thing of all, to accept yourself as you are. You have to make peace with yourself and your new life. This did not happen over night and in some ways its still a work in progress with me. I have been at this since 2004.

Coming here and getting things off your chest is a very good thing to do too. No one here will be judgmental at all. We understand how you feel better than anyone because so many of us have been there or still are there.

I have heard of your condition before, but I just cannot remember much about it. But, I will look into it and see what I can learn about it. if I am remembering correctly it can be a very debilitating type of pain too.

If you are not getting much relief with your current medication perhaps your dr needs to consider putting you on a long acting pain medication with something else for break through pain, instead of chasing your pain the way you are now. There is a lot of different pain medications out there that can be tried along those lines. The thing with pain is you have to stay on top of it instead of under it.

Anyway, I wanted to pop on and tell you welcome aboard. But, most of all, don't be so hard on yourself, this is not something you did to cause it. Take care and keep us posted on how you are coming along.
Moderator Chronic Pain Forum

Post Edited (straydog) : 9/8/2011 1:21:00 PM (GMT-6)


badheartdude
Regular Member


Date Joined Sep 2011
Total Posts : 58
   Posted 9/9/2011 7:58 AM (GMT -6)   
thanks for your quick reply, I know acceptance is the hardest thing and i am working with a psychologist as well on this and many other things related to my condition. you mentioned a longer acting pain med, I was previously on oxycontin ER but after losing my job I am no longer able to afford the $300 a month it was costing me due to the fact i do not have any prescription drug coverage. If you or any anyone else knows of a cheap alternative to this, I am all ears! Thanks again for your kind words and I will continue to check in as my journey continues..

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/9/2011 8:29 AM (GMT -6)   
Hi badheartdude - just wanted to welcome you to the group.

Not being able to afford the med - I don't know whether it's applicable to the oxycontin, or whether you'd be eligible - some drug companies have a 'compassionate supply' program that you can apply for. I'm putting in an application at the moment for one of my meds. Worth investigating maybe?

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

badheartdude
Regular Member


Date Joined Sep 2011
Total Posts : 58
   Posted 9/9/2011 8:50 AM (GMT -6)   
thanks Laura, I currently get my heart medication that way, i will look into that for the oxy as it worked so much better than the oxycodone ir i am currently taking.
thanks again.
BHD

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/9/2011 9:55 AM (GMT -6)   
 
         Hello badheartdude!
 
               I wanted to jump in here and also Welcome you to the CP forum! wink
 
       I was wondering if your PM has mentioned Methadone, as I know it is a very cheap med to buy, and many CP patients do quite well on it. You might want to inquire about it on your next visit.
 
      I also have a stent that was placed back in 2002 after having a massive heart attack at the age of 46. That was not a fun day in my life! shakehead
 
          Again Welcome, and we hope you stick around and enjoy the forum with us!
 
        Take care,
 
      SE wink
Moderator Chronic Pain Forum

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tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/9/2011 10:01 AM (GMT -6)   
Hello Badheart, nice to meet you. Welcome to our forum. Glad you found us but sorry about all the pain issues you are having.

You will enjoy the members here, very caring, understanding and informative. We all support each other as we all suffer from

chronic pain. I hope your dr. can find a medication that will help you. Keep posting and let us know how you are doing.

Hang in there.

Suzane

badheartdude
Regular Member


Date Joined Sep 2011
Total Posts : 58
   Posted 9/10/2011 7:19 PM (GMT -6)   
hello all,
I had a question regarding my meds and side effects. i have been on pain meds for about 2 1/2 yrs now and have recently developed muscle spasms or twitches, whatever you want to call them, all over my body.Its bad enough my wife has noticed. Is this something anyone else has dealt with? any advice would be appreciated i have mentioned it to my GP and he acted lie it was no big deal, but he is not the one going thru it. Thanks..
intercostal neuralgia, degenerative disc disease, atherosclerosis, depression, & anxiety
meds: gabapentin, oxycodone 30 mg, lipitor, xanax, effient, cymbalta, carbamazepine

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/10/2011 9:34 PM (GMT -6)   
Hi again Badheart - none of us here are doctors of course, but I know that my Dad is on Lipitor for high cholesterol problems not able to be controlled by diet, and was told that statin drugs can cause muscle spasms, though I think it's something that usually occurs fairly quickly. I'm not sure how long you've been taking them.

Cymbalta can cause twitchy muscles too.

I'm sorry that your GP isn't taking you seriously. You said it's pronounced enough for your wife to notice - can you take her into an appointment with you so that you've got an advocate there with you if he still refuses to take you seriously? Whatever the cause, it's obviously causing you some problems and needs looking into. All the best :)

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/10/2011 10:24 PM (GMT -6)   
hi badheart
i was reading about your condition and the article mentioned nerve blocks along the affected nerves. Have you tried this

to help with your pain? have you had shingles? it says the neuralgia can lead to shingles. Sure sounds painful.

Why did you need the nephrectomy? your kidney was no longer functioning? can your urologist help you at all? is there

any other specialty doctor that can help you? I'm just trying to think but nothing comes to my mind. It might well be worth

trying methadone for your pain. Perhaps a muscle relaxant could help. Have you tried massage or acupuncture.

When do you see your doctor again? Sure hope you can get some relief soon. Sorry you lost your job due to your illness. I know

that is a tough one to go thru as i have just recently lost my job as well due to the chronic pain. What was your profession?

I'm glad you've got support from your wife because it is a rough road this chronic pain journey. I find myself quite lonely all

the time. Do you have children?

Hang in there and keep us up to date.

Suzane

badheartdude
Regular Member


Date Joined Sep 2011
Total Posts : 58
   Posted 9/11/2011 9:19 AM (GMT -6)   
suzanne,
yes we tried the nerve blocks to help with the pain my pm doctor actually performed this as he is an anesthesiologist as well. Unfortunately I only had relief for about a day:( I had a cyst the size of a volleyball on my right kidney that damaged the kidney forcing the removal. I wouldn't wish the pain of that surgery on anyone, I was seriously begging someone to kill me in the hospital it hurt so bad.. I have tried methadone and the side effects were unbearable, vision problems, racing heart rate, terrible shakiness, felt like i had developed parkinsons, its too bad because its the cheapest thing i have tried. i also tried acupuncture as well to no avail, I don't think massage would be good as it hurts to touch that area I don't see my pain doc for about 3 weeks so i guess I will just have to deal with what I am using till then, sorry to hear about your job loss as well, I put up with it at work for almost two years before my employer decided it was too much to deal with. I was an office manager at a large paint contracting company. I too can relate to loneliness as I spend most of my days stuck at home while my wife works. We have a 16 yr old grandson we have raised since he was 4 ( quite a handful as he was diagnosed with ODD at an early age) and another 6 yr old grandson who doesn't live with us but is the light of my life. He is one of the main reasons I am able to continue putting up with the pain I am in. I appreciate the kind words and will continue to update.
Erik
intercostal neuralgia, degenerative disc disease, atherosclerosis, depression, & anxiety
meds: gabapentin, oxycodone 30 mg, lipitor, xanax, effient, cymbalta, carbamazepine

badheartdude
Regular Member


Date Joined Sep 2011
Total Posts : 58
   Posted 9/11/2011 4:56 PM (GMT -6)   
had to do a little bicycle repair on my grandsons bike and afterwards I was in excruating pain! Pretty discouraging that I can't change a tire on a 6 yr olds bike without having to take some meds and sit on a heating pad for 30 minutes afterwards. I really am getting drained and reaching the proverbial edge of the cliff dealing with pain like this everyday, if someone can brighten my spirits I would greatly appreciate any kind words as I sit here suffering....
intercostal neuralgia, degenerative disc disease, atherosclerosis, depression, & anxiety
meds: gabapentin, oxycodone 30 mg, lipitor, xanax, effient, cymbalta, carbamazepine

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 9/11/2011 11:43 PM (GMT -6)   
Aww Erik. I'm so sorry that you're suffering so much. I know how you feel. I've got bad back issues, and the pain has been worse than usual lately. I'm sure you've noticed my posts. I sure hope you're feeling better by now.

Take care.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 9/13/2011 3:56 PM (GMT -6)   
Hey Erik, please look in CP101, there is a list of places to get help with scripts. I have a 6 yr old grandson who is the reason I continue on as I do. I keep him as much as I can and we always have such a great time together.

Guess what, it may have laid you up a bit working on the bike for him, but think about what it would have been like if you would have had to tell him you could not fix his bike. So, give yourself a big pat on the back that you came through for the little guy. You moved a mountain for him all because you fixed that bike.

Take care.
Moderator Chronic Pain Forum
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