Chronic Pain

[amie]

I have posted my story in the neuropathy forum, but this forum looks to be the place where I can get info on how to manage my pain. 7 months ago the left side of my face started to go numb. Over the next couple of months is when it progressed to being painful and it just keeps getting worse. The pain goes from my left eye down to the inside of my mouth and tongue. Months ago I had a MRI that showed and enhancement of my trigeminal nerve extending from the Meckel's cave to the infraorbital region. I have been to 2 neurologist now that have had no idea what is causing this. They tried me on prednisone to see if it would reduce the inflammation, but it didn't. One doctor thought it could be a perineural tumor, but he said this is very rare. Part of my problem is that this all started before my husband got insurance with his job so now Blue Cross considers my condition pre existing and won't pay for anything related to it. I have only been able to have the tests that I could afford to pay out of pocket and that wasn't very much. My husband, my two kids, ages 1 and 3, and myself have had to move back to my parents house so that we could use our money for doctor visits and to get help with the kids.
I am 28 years old and sometimes can't even get out of bed because the pain is so horrible. I have tried Neurontin, Lyrica and Elavil all with no results. After months of excruciating pain I started taking Vicodin that was givin to me be various friends and family. It did help, but because it wasn't prescribed by my doctor there would be times when I had none. I recently went to the ER because I couldn't bear the pain anymore and they gave me some Vicodin and told me to take 1 5/500mg pill every six hours. This is nowhere near enough to make it tolerable. My doctor wants to start me on Tegretol, but wants me to have some pricey bloodwork beforehand.
I am really at a loss. I want my life back. I can't understand how these doctors can be so unsympathetic to the pain that I feel. It's like they treat me like I am exagerating or something. It feels very embarassing to talk about because the doctors make me feel like a wimp. I am sure that they have never experienced any type of nerve pain before or they would act differently.
I don't know what I am looking for on these forums except maybe some suggestions from people who are living in this nightmare too.
Thanks!

[Sue Val]

Hello. So sorry to hear about all your pain. I too have experienced this awful pain now for 4 years and this pain has now travelled to my feet and legs. I am also disgusted with doctors. I am so fed up with them thinking my pain is exagerated.I have tried all kinds of medications and none worked and the side effects were awful on my body. I too was given oxycoden from a family member and this worked quite well but at a high dose. I see a neurologist right now and she has given me a prescription for this but only at a low dose (2 a day) which by the the end of the afternoon I am in terrible pain again. These doctors do not understand the pain we go through and this angers me also. An animal would not suffer this much. This apparently was caused by a dentist's negligence and I can not even get any help from him. He told me nerve damage is very hard to diagnose and treat and to try to go on with my life now. He doesn't have to walk in my shoes for one day. I wish he would. My story with him is very long and complicated so I will not get into it. How did your pain in your face begin and do you know how it was started? Anyway I just read your post and felt so sad for you I wanted to let you know you're not alone. If you wish to talk about it more you can anytime I will listen. Sometimes it just feels good to talk about it. I do a lot research on this topic on the net to try to get some kind of help so I'm hoping some day to come up with some kind of help. There is a hospital North of Toronto Ontario Canada I am looking into right now so if I come up with something I will let you know. Take care and keep in touch
A friend Sue

[amie]

Thanks so much for your support. It does mean a lot to know that I am not alone in the nightmare! Unfortunatly they do not know what brought this on. At first they thought that I could have had shingles and it infected the nerve, but after taking a high dose of prednisone with no results they scratched that idea. One of my doctors thinks that it could be a perineural tumor, but without the money for tests he cannot find out for sure. They have reffered me to a doctor at UCLA medical center that might be able to help me more, but without coverage by my insurance co. it is just impossible finacially to go. Have you ever seen a pain management dr. ? People have suggested this to me, but I didn't know if they could help me. It is really hard not to just give up. It scares me to know that you have been going on for 4 years with no answers. I pray for relief for both of us...

[Sue Val]

No you are not alone in this believe me there are a lot of people like us but we just don't know about. I guess people just don't talk about this. Shingles was an option for my diagnosis too but I have never had shingles. It is really strange isn't it how not much is known about this disease unfortunately. I also was on prednisone and this helped for a bit but could not keep taking this because of side effects. Perineural tumor was also ruled out for me. See I'm a little luckier than you. Here in Canada we have health benefits which pays for most of these tests or MRI'S, scans ect...just your drugs are not covered. And yet if you're lucky enough to have a good drug plan from your work well even better. I do not have one from my work. It's my husband's work. I had to leave my job some years ago because of all the pain I was experiencing. I was finding myself calling in sick quite often. I use to work in a hospital and this was quite stressful. Please bear with me if I'm repeating myself at times but I communicate with quite a few people on the net so I don't know if I'm just repeating what I told the other person. Anyway do not get discouraged because of my untreated pain for all these years. Remember I'm in Canada and we have a really bad shortage of doctors here and can not find anyone of them who can treat this. We have to wait up to a year to see a specialist once you're referred. So it was not till recently I finally got in to see a neurologist after all the beating around the bush then was I able to get down to the nitty gritty with these doctors. Every time I would go in to see my family doctor (which I don't have anymore but another long story) he would tell me it was nothing and it would go away. I finally had to crack in his office and demand a EMG. Not too sure if you know what this is but if you haven't had one you should go for one if possible. This determines if you do have nerve damage. I had 2 of them done. One here in my town and one when I went to Toronto. Both times were very painful. (don't mean to scare you) Of course these tests proved to my doctor what I was telling him all along. Talk about a change of heart. Needless to say he was not too happy about my findings and being right all along. Some doctors are really egotistic. Anyway from then on it has been from one neurologist to the next. Maybe you will have better luck in this department. I wish you much luck on that. I don't know perhaps in the States they have a better procedures. Do not lose faith though. I am still searching and will be damned if I let the system take over my life. I can not be powerless with them and nor you. OK well If you wish to contact me you may anytime as I said before. Have a good night.
Yours Truly
Sue

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[amie]

Well if anyone has been following my story, I have some updates. First is that I finally have a schedualed appointment with a doctor at UCLA this coming April. Second is that I have started to see a pain management doctor. In some ways this has made my life easier, but in lots of ways harder. The pain pills I am taking are Norco 10/325- 1 to 2 every 4 hours. These pills really make me feel like I am walking around in a fog and do not keep the pain away for the whole 4 hours. Hopefully on my next appointment with him we will be able to find something that last longer. I am also feeling so perrinoid about taking all of these pain pills. I think that I am spending too much time on the internet because all I seem to find is chat forums that say the amount of pain meds I am taking is going to leave me with a horrible addiction. It just seems like you can't win. For now I want to keep taking the meds because I don't want to be in pain, but I don't know how to push the paranoia out of my brain so I can enjoy my time when the pain is controlled.
Just another chapter in this neverending nightmare called my life!!!

[Sue Val]

Hello. Please give me some news on your condition. Any improvements since your visit to specialist? I am trying to find someone with results and hopefully good results.
Thanks
Sue