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Old 08-25-2004, 12:21 AM   #1
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Join Date: Aug 2004
Posts: 1
pc216 HB User
I'm a total mess!

This is my first time posting here. I found this forum this afternoon, and must say, it lifted my spirits so high. Just to know there are people out there who are going through problems like mine is comfortating. And everyone here seems so friendly and caring.

I am a 41 year old, living with a variety of health problems. My major problems lie in the severe pain in my lower back and neck, shoulders and arms. I have a herniated disc at c5-6 and a buldging disc at L4-5. I have the worst insurance known to mankind, (medicaid) so I have been suffering with no hope in sight. Not to mention I had gone through so many doctors and they either think I am wanting the pain meds to get high, or they just don't want to be bothered with me. After 5 years of fighting, I finally got approved for an mri in 2001 which showed the proof of my pain. I was sent to an orthopedic surgeon who said I would need spinal fusion, but the insurance would not cover it. My medicaid worker told me if the condition is not life threatening, then they won't pay. I had been on every medication under the sun. Tylenol #3, vicodin, darvaset, norco, ultram, lorcet, percoset. Percoset is the ONLY one I get any relief from. I had got the inital 4 prescriptions from the ortho, but, unfortunatly, the primary doctor I had been seeing refused to write for that. Instead, he gave me duragestic patches, which I have not used yet. I did a lot of research on those patches and I am scared to use them. I cannot go back to the ortho, as the stupid hmo will not authorize any more visits. I'm at my wits end. I also have arthritis in both knees and the pain goes from my tailbone, all the way down my legs and it's unbearable. I also get violent headaches 2-4 times a month. I throw up for hours, can't move my head. I have an extremely low tolerance for pain, and am close to losing my mind. Nobody understands.

IN September, I will have a new doctor, as I was approved for SSI with the results of the mri. I no longer have to have the hmo, I can go on what's called "straight medi-cal" which is like a ppo, where I can see any doctor. I am so hoping this will work in my advantage. If not, I haven't a clue what I am going to do. I sometimes find myself praying to God to take my life, as this pain is so bad, and with no help in sight, I can't think of anything other than to give up.

I am hoping that someone can give me some tips on how to deal with this, and maybe what I can ask this new doctor. I will see him on September 2.

Thanks in advance.

 
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Old 08-25-2004, 06:31 AM   #2
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Join Date: Sep 2002
Location: ontario
Posts: 476
out2lunch HB User
Re: I'm a total mess!

Hi PC, welcome aboard!! Though I wish there was no need for pain forums!! I can certainly understand all you're going through, as your story sounds so much like my own!! My injuries were from a car accident, so it's the ins companies that give me all the headaches LOL, and surgery's not an option for me!!
I don't understand why you're in so much pain though, if you say the percocets are helping?? Other then, if it's so unbearable for you, 'cause your pain levels keep fluctuating all day, and it's getting to be too much!! If so, you need to ask the dr for a slow release med, like oxycontin or something!!
I take both oxy and perc, but the oxy doesn't last as long as it's suppose to!! The oxy is suppose to last 12hrs, but since it doesn't for me, I also take perc for breakthrough! This may be something that will help you get through!!
The best advice I can give you though, is that you have to take each day as it comes!! There's no looking back (how things used to be) or ahead!! We have to take the words "used to" out of our vocabulary, and stop looking too far into the future!! Otherwise we're headed straight into the pit of depression!!
Unfortunately, in most cases, this is how things are going to be from now on!! You have to try and get through each day as it comes, and not worry about how things will be later! Wishing for things to go back how they were, is only going to depress you too!!
Concentrate on all the postives in your life! What you still have and can do!! Afterall, things could've been worse!! I know that's easy to say, but it's the only way I got this far (7yrs)!! I'm married with 3 kids, and so I concentrate on them!! It hurts to not be able to do things with them I "used to do", but I can still do some things with them!! You just have to change what those things are, and enjoy the fact that you can!! I could've died in that car accident, and so could my kids have (they were in the car too)! So, I'm thankful that we still have eachother etc.!!
Do you have a councellor?? ie: Psychologist? Seeing a councellor, doesn't mean you're crazy or anything either!! Depression and chronic pain go hand in hand!! Afterall, your whole world's been turned upside down, and you're no longer in control of how it plays out!! I don't know what I'd do without mine!! Perhaps you can ask your dr for a referral to one? You may need anti-depressants to help get you through these rough spots too!
Another thing that's helped me and so many others here, is coming here and posting!! Writing is great therapy!! Most times I feel better, just being able to share with others that truly understand, and getting things off my chest!! It also helps me, to be able to support and be here for others!! It helps to make me feel like I'm still useful etc.
I love my family, but they can't truly understand all I go through, the same as I can't really understand how it is for them!! Unless you're living the pain, you can't truly understand how it is!!
One thing you can do to help you through, is program yourself to come here atleast once every day!! Even if it's just to post a hello, or to read!! I'm sure you've already found that knowing others are going through it to, helps! Perhaps coming here and supporting others, will help you forget about yourself for awhile too?
Anyway, I hope some of this helps! Please feel free to email/post to me anytime as well! I'm always here throughout the day (except weekends), and promise to do whatever I can to help you through!! ((HUGS)) take care!

 
Old 08-25-2004, 09:49 AM   #3
Senior Veteran
 
Join Date: Jun 2003
Location: fl
Posts: 654
cardinal HB User
Re: I'm a total mess!

Hello, I feel your pain! Me too, a mess. I have L5/s1 gone and collapsed after 1999 surgery, C 5-6-7 fused this past yr. L3-5 also herniated. Now the pain in my feet is worse and my hands, knees and ankles. I can not tolerate meds, so after so many trial and error am stuck with ibupropran and alittle hydro's. I got hooked on drinking, that really helped! but made my depression so bad. Now I am trying to not drink, 3 days, and the pain is so bad. I too just got ssi, but have to wait for ins to kick in next year. The healthcare system is so messed up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
You get approved as "disabled" but have to wait for insurance? So tomorrow I go for a doctor visit must pay cash. I truly don't think I would have any more surgeries and can't take meds so what can a doctor do? What I am doing is whatever I feel like, gardening, walking and "vegging out". I refuse to let this pain win. I sometimes wonder about "accupuncture" I would be willing to try any natural remedy. Have you tried msm? vit e, and ice packs? I did the steroid injections, it did help but had side effects. I'm 48 and have had my troubles since I was about 23 yrs. Nobody can understand our pain until they have been thru it! I am so sick of no compassion from family or friends. So I just don't tell them anymore. Living alone, new home, far from family with 2 puppies is a challenge! But, I'm doing it and happy. You can overcome it, be strong and good luck!!
__________________
Always have dreams.

 
Old 08-25-2004, 10:05 PM   #4
Junior Member
(female)
 
Join Date: Jul 2004
Location: Canada
Posts: 48
mink HB User
Re: I'm a total mess!

[QUOTE=out2lunch]Hi PC, welcome aboard!! Though I wish there was no need for pain forums!! I can certainly understand all you're going through, as your story sounds so much like my own!! My injuries were from a car accident, so it's the ins companies that give me all the headaches LOL, and surgery's not an option for me!!
I don't understand why you're in so much pain though, if you say the percocets are helping?? Other then, if it's so unbearable for you, 'cause your pain levels keep fluctuating all day, and it's getting to be too much!! If so, you need to ask the dr for a slow release med, like oxycontin or something!!
I take both oxy and perc, but the oxy doesn't last as long as it's suppose to!! The oxy is suppose to last 12hrs, but since it doesn't for me, I also take perc for breakthrough! This may be something that will help you get through!!
The best advice I can give you though, is that you have to take each day as it comes!! There's no looking back (how things used to be) or ahead!! We have to take the words "used to" out of our vocabulary, and stop looking too far into the future!! Otherwise we're headed straight into the pit of depression!!
Unfortunately, in most cases, this is how things are going to be from now on!! You have to try and get through each day as it comes, and not worry about how things will be later! Wishing for things to go back how they were, is only going to depress you too!!
Concentrate on all the postives in your life! What you still have and can do!! Afterall, things could've been worse!! I know that's easy to say, but it's the only way I got this far (7yrs)!! I'm married with 3 kids, and so I concentrate on them!! It hurts to not be able to do things with them I "used to do", but I can still do some things with them!! You just have to change what those things are, and enjoy the fact that you can!! I could've died in that car accident, and so could my kids have (they were in the car too)! So, I'm thankful that we still have eachother etc.!!
Do you have a councellor?? ie: Psychologist? Seeing a councellor, doesn't mean you're crazy or anything either!! Depression and chronic pain go hand in hand!! Afterall, your whole world's been turned upside down, and you're no longer in control of how it plays out!! I don't know what I'd do without mine!! Perhaps you can ask your dr for a referral to one? You may need anti-depressants to help get you through these rough spots too!
Another thing that's helped me and so many others here, is coming here and posting!! Writing is great therapy!! Most times I feel better, just being able to share with others that truly understand, and getting things off my chest!! It also helps me, to be able to support and be here for others!! It helps to make me feel like I'm still useful etc.
I love my family, but they can't truly understand all I go through, the same as I can't really understand how it is for them!! Unless you're living the pain, you can't truly understand how it is!!
One thing you can do to help you through, is program yourself to come here atleast once every day!! Even if it's just to post a hello, or to read!! I'm sure you've already found that knowing others are going through it to, helps! Perhaps coming here and supporting others, will help you forget about yourself for awhile too?
Anyway, I hope some of this helps! Please feel free to email/post to me anytime as well! I'm always here throughout the day (except weekends), and promise to do whatever I can to help you through!! ((HUGS)) take care![/QUOTE]

 
Old 08-25-2004, 10:20 PM   #5
Senior Veteran
(female)
 
Join Date: Jul 2004
Location: usa
Posts: 2,943
mel1977 HB User
Re: I'm a total mess!

OH WOW! You sound just like me, the only difference is age and insurance! I too have a herniated disc at C5-6 plus spinal stenosis. I have a small bulge and stenosis at L4-5 and a medium bulge, an annular tear and spur at L5-S1. I just had a horrible day with my first visit at the ortho doc and am going to seek a second opinion. I love my PPO since I don't have to get the referral. You can read my frustrations:"leaving the back...." and "angry, last one I promise...". I had a surgery in 2002 to remove my first bulge at L5-S1, with good success. But, b/c I am a nursing asst and a hard headed person, I believe I had re-injured my back, and a year after that, got the MRI stuff. I am 26 currently and also feel I am getting near my wits end. If I don't get a good drs visit soon, I don't know what I will do.
I have been on Vicodin, Percocet, Lortabs, Ultracet. I don't use these at the same time mind you.
I too have knee pain, leg weakness, sciatica, and just your normal crappy pain. I am on here off and on since I am not currently working. I look forward to posting with you, please check out my posts if you'd like-one more person who "feels your pain".

 
Old 08-25-2004, 10:34 PM   #6
Junior Member
(female)
 
Join Date: Jul 2004
Location: Canada
Posts: 48
mink HB User
Thumbs up Re: I'm a total mess!

Hi Out2lunch, I too am a newbie, Im Mink, 2 years ago I had c5 an c6 disc fusion, still have most of symptoms I started out with, the spinal cord is compressed so I am Numb from the waist down, have horrific pain in both hands baby fingers ring fingers like knives cutting in to them, the mri showed spinal canal stenosis, narrowing the AP diameter to 6mm(whatever that means) entending to the c7 consistant with myelomalacia secondary to cord compression sorry I am taking this right off the mri report, could not remember, also a mild disc degeneration at T7-8, also Grade 1 anterolisthesis of L5 over S1 with bilateral spondylolisis(no idea on that either) an finally osteophyte at L2-3 an L3-4 compatible with mild DDD an facet osteoarthritis involving L4-5 facet joint, sorry I am clueless all I know is the pain meds Percoset,Novo Nortriptyline,M-Eslon, Oxycontin, Gabapentin, Ratio Oxycocet, an Ibuprophen nothing stops the pain , it does take the edge off in my hands for a few hours but thats it I am so tired of trying all these drugs to no avail, now my work ins has agreed to pay for the Gabapentin an Oxy, provided I try a work trial when we get the pain under control, but so far has not stopped the pain. It is work for me just to get dressed an make it thru another day, I do have a great sense of humour an will not give in to all this. I am lucky to be walking(gimpy) I am so glad I finally had the nerve to come on here, I am a very private person but do need help. Thank you for any advice anyone can give me. Mink

 
Old 08-26-2004, 02:55 PM   #7
Inactive
 
Join Date: Sep 2002
Location: ontario
Posts: 476
out2lunch HB User
Re: I'm a total mess!

Mel & Mink, it's so unfortunate how many of us have the same story! There's way too many people suffering with cp, and so few drs that still care or know what to do about it!
My earlier post makes it sound so easy to deal with all this crap, but it's taken me quite a few yrs to get this far!! I refuse to let cp win!! That doesn't mean I don't have my bad days, I do!! One just recently with losing my family dr so abruptly!!
I've found a new dr (that I hope is good), and some more strength, to go on fighting for a little while longer!! Living the cp life, requires a whole lot of strength, and you all should be very proud that you've gotten this far!! So many people wouldn't last as long as you have through all this, so cut yourself some slack!! Take each day as though it's your last, and you'll make it through!!
I'm always here for anyone who'd like to chat/email/post eachother, 'cause I firmly believe that together we can all make it through just about anything!! ((HUGS)) to you all, take care!

 
Old 08-28-2004, 11:51 PM   #8
Senior Veteran
(female)
 
Join Date: Nov 2002
Posts: 2,221
lori j HB User
Re: I'm a total mess!

My suggestion is to try physical therapy before resorting to surgery. I tried meds, injections, chiro etc. I was in horrible pain til someone suggested I try PT. That was five years ago & I still have not had to have surgery. Most times I'm without any pain, unless I do something stupid like try to lift something to heavy or move furniture.

 
Old 08-29-2004, 07:55 AM   #9
Senior Member
 
Join Date: Aug 2004
Posts: 152
Stormy01 HB User
Re: I'm a total mess!

Hi,

I was afraid of the patch too. Scarey thinking what could happen if it got snagged and torn, luckily for me the glue was burning my skin and I had to take it off. They put me on Oxycontin which is safer, (in my mind) to take. Less chance of an accident with it. My doctor didn't have any problem as long as I was having a reaction to the glue. And it really did burn me. It would start about 5 minutes from when I put it on and start to tingle, then within 10 minutes be in full burning with my skin going all red all around the patch. I don't think it had anything to do with the drug. Just the glue in the delivery system. I'd tell them of your fears of the patch. If your active and have kids, I'd be scared to death. Kids can and will do anything.

Also, see if you can find a really good Pain Managment Specialist or Pain Clinic in your area. Or out of your area if you are up to traveling. They can make a huge difference with good sound advice and recommendations for PT or other specialists. It's their job. God I love my PMS. He's from the Ukraine and is just fabulous. He listens to me, and doesn't seem to have the cotton in his ears like most doctors do around here. We're even on a first name basis. I'm a person to him, and I feel so very fortunate to have found him. I would say to go online to your State's government page and from there to the Registry of Physicians. Look to see if anything is listed there.

Good luck!

 
Old 08-29-2004, 08:12 AM   #10
Member
 
Join Date: Aug 2004
Posts: 51
Ribarb47 HB User
Re: I'm a total mess!

I was on the Duragesic Patch for 2 years and never had any problems with it. I had a small amount of itching, so my Dr had me use an inhaler (sprayed on the skin) and that took care of the itching. I had to change my patch every 48 hours instead of 72, as my body metabolized the med quicker. I went as high as the 50mcg patch, and then he changed me to methadone which I couldn't tolerate at all, and now take Kadian twice a day. I too have a wonderful relationship with my PM Dr. They're the best.
Barbara

 
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