pain management support group

I'm sorry to see what you go through, Sabrena. You have been through so much and to find little to no relief, compiled on top of raising three kids, you deserve all that you desire. I don't know if you have tried Fentanyl, but it works wonders for some. Although you have mostly nerve pain (extremely hard to treat) have you had success w/ neurontin? Lyrica? Maybe i should go back & re-read your post; but for now I just wanted to offer words of support. You have been dealing w/ so much for so long, I would recommend cognitive behavioral therapy. It's all about feeling better day-to-day. Keep us updated w/ your progress. Hope to see you back, Bren

Thank you Bren for your reply...Yes I take Fentora 600mcg ( Fentanyl buccal tablet ) which is a dissolve-able tablet you put on your gum on the top of your mouth. I also take Neurontin 400 mg 2 capsules 3 times a day . I have tried Lyrica it didn't do anything but make me swell ...lol...I didn't need that on top of everything else..lol...The Drez surgery I had 5 years ago has been the only thing to help the nerve damage , b4 I had it my husband could not even breath on me at night , my kids couldn't touch my arm at all..They go in and take what nerves out that are damaged but there are serve risk to the surgery as there are to any surgery..The major are hemergin , Spinal Meningitis, infection the lose of the left leg completely & never getting it back..I did lose a lot of use of my left leg and had to learn to walk right with it again but after 6 months of having to walk on a cane I threw it down and said I already have to depend on a brace for my arm pretty much for the rest of my life I DO NOT WANT TO BE DEPENDENT ON SOMETHING ELSE....I said if I fall I fall and believe me I did..LOL..But I do go with out it when I feel like my leg can handle it , but there are days it does buckle alot so if I have to go somewhere I do use it. But I am praying that this 2nd Drez works as well as the 1st did...I thank you soooo much for your words of support it means sooooo much to me...And I'm going to keep looking for the positive things out there that may help me and some one else going through similar things I have or just someone that is in Chronic Pain...Thank You So Much....Sabrena Moore

Hi Sabrena71,
Its been 4 months since your post so I don't know if you still check in but I hope so!!! I am sorry tthaat you have such horrible pain and I want you to know that I understand!!!!I don't have ht e same kind of pain eveeery day but I definatly have really horrible ones too!I have tumors that grow on the nerves on my spine so I can relate to Nerve pain ,it sucks!!!!
I am looking too to find thing that are outside of me to take my mind off of me and my pain!!!!!God really helps me with this and I'm really gratful for that!Can you relate??I will be praying for you, 77grace

Hi 77 Grace,
I am so sorry that you have to go through all the nerve pain I can relate all to well. I also agree God is amazing !!! I hope & pray you get more and more relief everyday. My husband and kids help me so much also talking to my family & friends and getting on the computor playing games esp. at night when I can't sleep @ night it helps keep my mind off some of my pain.I want to thank you for responded to my story I enjoy so much talking to others about whats going on in there lives and how they deal with there pain. I just got a email today telling me they are going to send my to a specialist in Atlanta GA, I am so excited to get the chance to see this new specialist I am praying they know some new things that may be able to help me & others with nerve pain I will post after my appt @ the end of Oct. God Bless You and Prayers for you also. Sabrena71
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Hi Sabrena70,

I am so sorry to hear about all of your pain & suffering! You've really been through the ringer. I have a brain malformation and many other things, so I can relate to the constant pain. I had a hip replacement a few yrs ago (only 44 yrs old now) and they damaged the femeral nerve in my right leg. That's nothing compared to the nerve damage you have suffered, but I do know how awful nerve problems can be. I also have neuropathy amongst my many problems. So glad you get some peace of mind from God. Sometimes it's hard to understand why we must suffer on & on. It doesn't quite make since, but thank God we have him on our side, right! Couldn't make it without him. God bless you & your wonderful husband!

I'm very sorry to hear about your terrifying experiences with chronic pain. Mine has been going on for almost 40 years.

Most spine surgery carries a long-term (12 months) success rate of about 60%. That's one of the lowest success rates for all types of surgery.

You mentioned trying the IT pump and the spinal cord stimulator (SCS). Yet those are the last two treatments that should be attempted at a comprehensive pain management program. The others to try first include: spinal decompression, corset, brace, TENS, traction, acupuncture, biofeedback, physical therapy, kinesiotherapy, injection of steroids and anesthetics, non-steroidal anti-inflammatories, cortisone, rhyzotomy (radio frequency denervation), off-label medications (anti-depressants, anti-convulsants), combination of long-acting pain medication with breakthrough meds, counseling, hypnosis and meditation. If all of those fail, then you can try the IT pump or the SCS. The reason to delay them is because surgery is required to implant and to remove these mechanical devices and all surgery entails some morbidity risk. Some chronic pain patients have succumbed to MRSA infections related to implantation. In fact, some of the less risky treatments are very helpful. For example, I can reduce my pain by about 20% at any time with biofeedback alone. Some people find acupuncture useful. Even hypnosis can help.

Knowledge is power. The most important thing in your life is your health. I was too eager to have spine surgery and it failed four times, including multilevel fusion. Now, the surgical fibrosis (scar tissue) creates even more pain.

I hope that you can find some measure of relief from your pain. Meanwhile, here is the most comprehenisve, detailed report on all major spinal interventions: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf . I hope that you find it useful.