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Hello All,

As usual it is great to see everyone posting on this message board. I'm glad we can all be here for each other by providing our stories and offering advice.

Vermont Girl - I too have burning in the groin area. It's been there since the onset of the SFN years ago. It starts in my stomach and low back area and just funnels down into the groin. I also have the symptoms in my legs, feet, back and chest. It is a deep burning that just feels like it's eating your insides away. I can totally relate to your symptoms. It's crazy how this SFN works. It just wrecks havoc on our entire body. The only reason I'm sharing this is so you know there are other people out there that have the same symptoms as you. Knowing you're not alone always helps cope with the pain.

Until recently there were only two people that really knew how much pain I was in. It wasn't something I was comfortable talking about to family members, friends, or co-workers. In fact, I was down right embarrassed and ashamed to discuss it. I think it had a lot to do with a lack of a diagnosis. I didn't know what was wrong with me for over 10 years. Maybe the doctors were right? Was I just going crazy and manifesting all the pain in my head? Then I go to some neurologist who suggests we do a punch biopsy to test for SFN. A week later the results are back and I test positive for SFN. I was utterly shocked. The diagnosis explains 95% of the pain I feel. The burning, cold, hot, tingling, and fatigue...everything. This was a few months ago, and for me, the diagnosis was everything. With the help of a pain physiologist, I can now talk to my friends, my family, and my fiancÚ without feeling embarrassed because I have a diagnosis that explains my symptoms. I'm not just 'the guy in pain but doesn't know why' anymore and that makes it easier to talk about. People can relate to a diagnosis a lot easier than unexplained pain.

I can talk to doctors now and not feel like they think I'm crazy, or that I need to talk with a shrink for some childhood trauma that doesn't exist. I can ask for medicine without being labeled a "pill seeker or drug addict.' Both labels I was given by many doctors during my journey for a diagnosis. Most of all however, I know what is wrong with me, and that allows me to cope a lot better. Vermont Girl, I understand what it's like, 'not to lead a normal life.' It's scary being in pain all the time, and it takes a huge toll on everyday life. It's tiring, depressing, and severely dishearting suffering with SFN. I feel for you and everyone else that has this disease and ask that you don't ever give up on yourself in your quest to feel better. There may not be a cure for this disease, but there are medicines out there that ease our pain.

I guess we just need to keep fighting for ourselves. Keep working with our doctors to find the right treatment and mixture of medicines to get us back on track. Right now I'm very content with how my doctors are treating my SFN. I feel better. Granted, I'm on drugs all day, but I can function with no problems. I can accept being on med's all day. Without them, and a diagnosis, my life would still be a nightmare. I lived my life for 11 years in tremendous pain and I refuse to ever go back!!!

Daisy - I too have an understanding FiancÚ which makes all the difference in the world when taking meds that impact your libido. I'm very happy to hear your husband is a supportive person and that he treats you nice and with respect. I've read so many times on these message boards about a persons spouse treating them like crap because they're in pain. That's total bullcrap if you ask me. If your significant other and friends love you, they should be there for you no matter what!

Keep looking for a new pain clinic. That is crazy that it takes a year to be seen. What area do you live in? Maybe we can work together to help you find a clinic you can get into faster? There is no excuse to start at square one again. I would recommend getting all your medical reports together and demand that your GP find you a place to be seen. It makes me so mad when I hear about doctors dropping patients and not giving them the treatment we deserve. It's that attitude that made me stop seeing doctors in my late teens...and as a result I lived in total pain, with no treatment, for so many years. Please go back to your doctor and TELL THEM what you want done. We are paying them to help us, which doesn't include giving their patients the 'brush off.' If I can make one recommendation, write a letter. Detail why you're writing it, your medical history, pain symptoms, and what you want from the doctor that treats you. I got so frustrated trying to talk with doctors. They don't give you more than 1 minute to speak and quickly jump to conclusions with some crappy diagnosis. That's when I decided to write a letter, and I would not allow a doctor to see me until they read the entire thing. In fact, I would ask them questions about the letter at the beginning of my appointment just to make sure they took the time to read it. If they didn't I'd refuse to talk with them until they did. As patients we have to remember that we're priority number 1. Doctors lose focus of that concept and it is our job to bring them back to reality.

If you do have to start all over (while I think that sucks) be it. But do it different this time. Go into these doctor's offices with a determination to get the treatment you deserve. Write the letter, make them read it, and tell the doctors what meds have worked for you, and how you want them to treat your pain. In fact, I'll consider posting the letter I wrote just so you can see what I'm talking about.

Sorry for the rant all, as you can see I'm very passionate about my situation and that of others as it pertains to SFN. I pray that all of you get the treatment and love you deserve.

More to come later.


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