[Liftyourhands7]

My neuropathy started over 3 1/2 years ago, I have full body SFN, I thought it couldn't get any worse but it has, the pain is so much worse, the intensity started getting worse about a month ago. I had to double my Gabapentin, has anyone had this happen to them. My pain level
Stayed stable for about 2 years, it was bearable,although uncomfortable, but now I almost cannot stand the pain! Why can't these Doctors find out what is causing this. Can SFN cause muscle pain along with all the sensory
Problems I'm having? I need help with all of this pain! I am going to the Mayo clinic in July, that's the first available appt. they have. If anyone else has any suggestions I would appreciate it. I am raising my 3year old and 5 year old grandchildren, I've got to get this pain under control! I'm
Desperate!

[ger715]

Originally Posted by Liftyourhands7

My neuropathy started over 3 1/2 years ago, I have full body SFN, I thought it couldn't get any worse but it has, the pain is so much worse, the intensity started getting worse about a month ago. I had to double my Gabapentin, has anyone had this happen to them. My pain level
Stayed stable for about 2 years, it was bearable,although uncomfortable, but now I almost cannot stand the pain! Why can't these Doctors find out what is causing this. Can SFN cause muscle pain along with all the sensory
Problems I'm having? I need help with all of this pain! I am going to the Mayo clinic in July, that's the first available appt. they have. If anyone else has any suggestions I would appreciate it. I am raising my 3year old and 5 year old grandchildren, I've got to get this pain under control! I'm
Desperate!

Unfortunately, the only way I have been able to keep 24/7 pain tolerable is with Oxycontin and Percocet. I have, in the past, done all the injections with my Pain Management doctor, as well as a trial SCS which did not go well. I am not aware of any type of cure whether SFN or PN.

Many of the meds we take for other conditions can often add to muscle pain. Since starting a new prescription for a dermatitis condition, I have noticed additional muscle pain.

Sorry you have to wait so long to go to Mayo. I am interested in learning what they would suggest.


Gerry

[tatonka]

I am sorry for your pain....but I don't think Mayo is going to be your salvation.

I was there with SFN symptoms, and after 1001 tests, I was told I have nerve pain with no known cause. The treatments they offered me are the same drugs as everyone talks about. They had no great answers, their doctors were not that caring, and they all seemed to uninterested in SFN as there is no cure or good treatment.

They have a great reputation in medicine, but my experiences with them and SFN was not great. I have transferred myself a smaller local neurology clinic and even without a cure I am happier.

Best of luck!!

[zkrp01]

Originally Posted by Liftyourhands7

My neuropathy started over 3 1/2 years ago, I have full body SFN, I thought it couldn't get any worse but it has, the pain is so much worse, the intensity started getting worse about a month ago. I had to double my Gabapentin, has anyone had this happen to them. My pain level
Stayed stable for about 2 years, it was bearable,although uncomfortable, but now I almost cannot stand the pain! Why can't these Doctors find out what is causing this. Can SFN cause muscle pain along with all the sensory
Problems I'm having? I need help with all of this pain! I am going to the Mayo clinic in July, that's the first available appt. they have. If anyone else has any suggestions I would appreciate it. I am raising my 3year old and 5 year old grandchildren, I've got to get this pain under control! I'm
Desperate!

SFN,DPN, and a dozen other acronyms must be interconnected with subtle differences IMHO. I had (still have ) muscle pain in addition to classic symptoms of burning,zapping, tenderness,etc. The muscle pain was to me a seperate set of problems but my Dr. said it's all the same. The muscle pain had to be addressed w/opiate to be able to cope. The muscle pain moved around some and changed intensity. Lumbar was first the worst, then the knees, then the buttocks. Tens unit on knees helped put out some fire there, so I began thinking about inflammation. The focus on diet here on NT is fueled by people with different needs and thus the diets are different. I try to avoid carbs as much as possible and believe that this reduces inflammation. Some are much more disciplined and go gluten free. Two years down the road I now take Tylenol instead of opiate and can drive a car for about 2 hrs before I start squirming from Lumbar pain. If you are not scrutinizing all areas of your lifestyle, you also might think toward inflammation. Good Luck, Ken in Texas.

[mrsD]

We had a poster here who had ischemic pain from a compressed celiac artery in the upper stomach area. He had PN from it from the stomach down.

You did that that surgery for your GERD, etc and perhaps you have an adhesion there compressing nerves or blood flow in the area. Ischemic pain (poor blood) can be very painful and seem like nerve pain. So I would suggest you have Mayo give consideration to this as a potential complication specific to you.

[Balanchine]

You don't mention if you're taking anything besides Gabapentin, e.g. any of the opiates. You might look into Kratom, a plant that grows in SE Asia. It's available from many online vendors and is excellent for pain. If you want to PM me I'll tell you more.

[Liftyourhands7]

Thank you for your posts, I am trying to stay away from opiates, I'm groggy enough on Gabapentin. I may in time need something stronger but for now I'm just trying to deal with this pain with Gabapentin and diet as well as accupuncture and supplements, and a lot of prayer. I trust The Lord for healing and I always will. Again I want to thank you for all your suggestions and comments, when and if I go to Mayo I will take all these suggestions with me. You guys are so wonderful on this forum. I learn something new everyday! Thank you!

[beatle]

I too had aspirations of going to Mayo clinic to get better answers than I had until my doctor explained "there is nothing they are doing there that we are not doing here. And, there is no cure or treatment available there that is not available here".