Newly diagnosed

I've had a host of strange symptoms over the last 6 to 10 years. Never crossed my mind they were are related. Ive been on lyrica a couple of weeks now, small dose, the pain is a bit less. However, all the bad things I've been reading about the drug, make me question if I want to take it. Yet, so far, the only thing I feel is better than it was. It is certainly better than the constant pain, sore thoat, ear pain, and fear of some foods triggering a worse episode, or the fainting like spells. Glad to have found this support group. Joyce

Joyce I am so sorry, that you, like myself suffered for so many years with this pain going undiagnosed. I am glad you found this support group. I am pretty new to the support group myself; but I found it to be very comforting to know that I wasn't alone. I also found some treatment options. I hope you are now treating with a neurologist or neurosurgeon that has experience with gpn. I realize that there are not a lot out but that is so important. Good luck in your continued treatment.

Hi Joyce,

Glad you found us. Utilize our collective experiences to help you find your path to recovery. I personally am a success story who underwent decompression surgery. There are no easy answers but like Holly stated, you must get to someone who has large amounts of experience treating GPN.

All the best,
Rob

Hi Joyce, I noticed you have the same symptoms as myself and others. As you, there is constant pain, which varies in intensity; sore throat, with great difficulty swallowing; ear pain and will avoid anything that might trigger an intense pain episode. I too just started taking a low dose of Lyrica but am watching carefully for side effects. I can not take the typical meds that is prescribed, as my system rebelled after six months. So hopefully we will do well on this medication. I strongly suggest you find a good neurologist or neurosurgeon and stay with them. This is a rare condition and they can help. I am new to this site and have NO experience in doing this. I have got to learn how to do this and still struggling. Seems like nice people that are encouraging. Nancy Jo



Holly said:

Joyce I am so sorry, that you, like myself suffered for so many years with this pain going undiagnosed. I am glad you found this support group. I am pretty new to the support group myself; but I found it to be very comforting to know that I wasn't alone. I also found some treatment options. I hope you are now treating with a neurologist or neurosurgeon that has experience with gpn. I realize that there are not a lot out but that is so important. Good luck in your continued treatment.

I am working with a Dr. called a pain specialist. Just a couple weeks into therapy. I do feel a bit better. So I do have hope this will work for now.



Nancy Jo said:

Hi Joyce, I noticed you have the same symptoms as myself and others. As you, there is constant pain, which varies in intensity; sore throat, with great difficulty swallowing; ear pain and will avoid anything that might trigger an intense pain episode. I too just started taking a low dose of Lyrica but am watching carefully for side effects. I can not take the typical meds that is prescribed, as my system rebelled after six months. So hopefully we will do well on this medication. I strongly suggest you find a good neurologist or neurosurgeon and stay with them. This is a rare condition and they can help. I am new to this site and have NO experience in doing this. I have got to learn how to do this and still struggling. Seems like nice people that are encouraging. Nancy Jo



JIG said: I've just been refered to a pain specialist, who started me on lyrica. I do see a neurologist for the spinal stinosis. Plan to talk to him about the GPN on my next visit. Supportive people yes, and I too just learning on this site. hoping my comments are getting on the right place. As I have done the past few years with my symptoms, will find our way I'm sure. Joyce



Nancy Jo said:

Hi Joyce, I noticed you have the same symptoms as myself and others. As you, there is constant pain, which varies in intensity; sore throat, with great difficulty swallowing; ear pain and will avoid anything that might trigger an intense pain episode. I too just started taking a low dose of Lyrica but am watching carefully for side effects. I can not take the typical meds that is prescribed, as my system rebelled after six months. So hopefully we will do well on this medication. I strongly suggest you find a good neurologist or neurosurgeon and stay with them. This is a rare condition and they can help. I am new to this site and have NO experience in doing this. I have got to learn how to do this and still struggling. Seems like nice people that are encouraging. Nancy Jo