[dd231]

I've taken some mixed emotions reading some of your stories, and decided to share mine as well. All I knw for certain is I've been DX'ed with DDD anter living with debilidating pain in my hip jionts knee caps and feet for the past four yraes. It got so bad, I could no longer concentrate on work, the steady buildup of strangulating pain made it imposible to think - or be aware of any thing else. I got the DDD from an MRI, and I'm assuming there are pinched nerves, but I've seen a host of other deseases listed with names that sound as if they couold have relavence. It started (a few years ago) with a heavy, almost numb feeling in my legs, like i had just biked 20 miles. I told my PCP about it and he suggested cybolta, because it helps with pain was his rational. I suffered through the winter, hot baths and tons of advil and went back to him several months later, he sent me to rumy, a nuro (both negative) and had me try nurontin, and a run of pregnazone. By this time, about a year later, I felt as though my legs had been pulled out of my hips and put back wrong, or my knees snapped backwards at the caps, or someone had beat the bottoms of my feet with a bat. the pain would shift from one spot to the next and happen nightly. Four months after the rumy told me he could find nothing wrong, I went back to my PCP and he ordered the MRI. That showed the DDD in L1-2 and L3-4. Aldo noted was an 8mm hemagenioma on L4, which I'm told had nothing to do with pain. never the less, he refered me to PM and I began cortazone injections at the spine. 1/month for three months and no relief. Meanwhile, mt knees, hips and feet are as bad as ever, and I notice that sitting, either in my truck or at work seems to triger the assult. PM gave me a script for a TENS unit, after the third injection, and lyceria along with vicodine 10/500's and lidocane patches. The Tens didn't help much, but I use it for the distraction, and I could takd 6 vics before lunch and still be in unbarable pain just from sitting. PM turned me back to my PCP and he began opiade treatment with methadone, which made me itch like hell, then switched me to the patch. I've already worked up to the 75/hr dose and after two days I'm back in pain. These are supposed to last for three days any stop a horse in its tracks. One thing I picked up fron your forums is there's an apparent difference between the generic(i tgook to for granted that because it said Fentanyl it wasn't generic) and the manufacturer's brand. would there be that much of a difference in the strength and duration of the medicne? and I've heard over and over that the DDD should not put me in as much pain as I've described, yet no one has offered anything that would. Any thoughts on whats causing this... who could test for it, and how much worse will it become? I've also read that the patch shoud be given after other meds opiad meds or combinations have been ineffective. Does anyone have a simular condition or expierence with RX patches?? I'll welcome all your coments, and happy thanksgiving...

dave

[Diandra]

Hi Dave,
Whenever I hear of people with terrible pain that is not diagnosed I can only tell you about my experience. I had excruciating pain that no one could dx for years and it turned out to be Lyme Disease. I was also told DDD but, it should not be causing the type of pain I was in. People don't know Lyme Disease can affect the nervous system and any other system in your body and cause a myriad of terrible symptoms.

Here is a link to a paper on Lyme Disease by a doc who has been treating it for something like 25 years. Look at the list of symptoms. Someone handed me that list of symptoms years ago and I was astounded at how many I had.

http://www.ilads.org/burrascano_0905.html

I wish you the best and I am sorry for what you are going through. I hope you have support via your family, friends and medical community.

Diandra

[dd231]

Originally Posted by Diandra

Hi Dave,
Whenever I hear of people with terrible pain that is not diagnosed I can only tell you about my experience. I had excruciating pain that no one could dx for years and it turned out to be Lyme Disease. I was also told DDD but, it should not be causing the type of pain I was in. People don't know Lyme Disease can affect the nervous system and any other system in your body and cause a myriad of terrible symptoms.

Here is a link to a paper on Lyme Disease by a doc who has been treating it for something like 25 years. Look at the list of symptoms. Someone handed me that list of symptoms years ago and I was astounded at how many I had.

http://www.ilads.org/burrascano_0905.html

I wish you the best and I am sorry for what you are going through. I hope you have support via your family, friends and medical community.

Diandra

Hi, thanks for the kind words. Lyme was the first thoughts by myself and my PCP. Even though the tests came back negative, he put me on the meds to treat it. He said threr are chances that it could be missed bt the screen. That was three yrs ago. Even with the patch, I have break throughs of terrible pain at frequent times. I'm going to try to find someone who specializes in these pain deseases.

[Diandra]

Hi Dave,
Here is a website that may help you find a doctor in your area that knows Lyme Disease although it is not guaranteed. There are not too many pain mgmt. docs that know about the intractable pain of Lyme Disease.

http://www.lymediseaseassociation.org

Your doctor was on top of things to know that it does not always show up in a blood test and you have to diagnose clinically(meaning the doctor makes the diagnosis by what your symtoms are). If you have had Lyme Disease for awhile you will need to stay on high doses of antibiotics for potentiallly months. I had to do IV rocephin for a couple of months. It is not that bad. They put a semi-permanent IV line in your arm and teach you how to administer it yourself and a nurse comes to your house once or twice a week to check it. I know it sounds scary but, if it will make the pain go away I think anything is worth it. Honestly Dave, I had the worst pain I had ever experienced in my life and when you have that kind of pain and nothing shows up on test people look at like you are little nuts or a hypochondriac.

What state do you live in?...I may be able to help with a Lyme doc or a pain mgmt doc.

Diandra

[dd231]

Hello again,

I live in Connecticut. ... Just had a far fetched thought,... both of my sisters said I've grown since last year when they saw me on thanksgiving. The last time they saw me was thanksgiging 2006. I'm 41, and have never heard of a mid life growth spurt, in a physical sence anyway, have you? It might explain the extreme jiont and leg pain, but I havn't been able to find anything on the web.... I'm probaby reaching, I know, but I'm not ruling out anything...

dave

[Diandra]

Hi Dave,
Well, that growth spurt at 41 is certainly an unusual occurence. Perhaps your rheumatologist has an explanation.

I sent you a private message with the names of the doctors I go to as I live in Connecticut too. Don't like to put doctor names on public forums.

Take care, Diandra

[fiberowendy2000]

The Patch does break down for some people after 48 hours. When I was using it I was using the 50s and down to 36 hours of use. Finally I just ripped the last one off and decided to not use it again.
I have been through all the drugs you have mentioned. The only thing that helped my leg pain is burning the nerve that is causing the pain. Then again I have Joint Facet problems in the L3-L5 area and they are pinching or impinging the nerves and causing my sciatica. The results last about 6 months for me and then I have to do it again.
The process is called Radio Frequency Ablation if you want to look it up.
Good luck with finding help with your nerve pain.
Have you seen a pain doc yet?

[dd231]

thanks for the info. I called my PCP 5 min. ago and asked then to switch me to the nongeneric brand of the patch. Last week I called CVS and the pharmisist said a lot of people have problems with the generic brand, from falling off to not lasting the 72 hrs. They recomended that I change after 48 hrs and inform my doc and ask him to rewrite the script. He's been closed since Wednesday, so this was the first chance I've had to do that. I want to see if the brand mane makes as big a difference as what I've heard and for my Insurance to change to "no referal" before I look for another doc.

all the best to you,

dave

[dd231]

does burning the nerve leave you numb, without feeling, or simply pain free??

How would you describe the sensation you're left with...??

dave

[fiberowendy2000]

Pain free. Unfortunately the procedure is uncomfortable to down right painful. The effects happen either right away or within the first week.
You can still feel the floor and stuff so don't worry about that. The funny part is when I need to go and have it done again, the first symptom is my bladder is sensitive to sneezing and laughing. That is my clue to get it done again. Not sure if it is just me, but have my Depends on hand at all times!